iSupport for dementia: training and support manual for carers of people with dementia

iSupport For Dementia Training and support manual for carers of people with dementia iS u p p o rt In te rv e n ti o n M an u al iSupport For Dementia Training and support manual for carers of people with dementia © World Health Organization 2019 Some rights reserved. This work is available under the Creative Commons Attribution-NonCommercial-ShareAlike 3.0 IGO licence (CC BY-NC-SA 3.0 IGO; https://creativecommons.org/licenses/by-nc-sa/3.0/ igo). Under the terms of this licence, you may copy, redistribute and adapt the work for non-commercial purposes, provided the work is appropriately cited, as indicated below. In any use of this work, there should be no suggestion that WHO endorses any specific organization, products or services. The use of the WHO logo is not permitted. If you adapt the work, then you must license your work under the same or equivalent Creative Commons licence. 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The mention of specific companies or of certain manufacturers’ products does not imply that they are endorsed or recommended by WHO in preference to others of a similar nature that are not mentioned. Errors and omissions excepted, the names of proprietary products are distinguished by initial capital letters. All reasonable precautions have been taken by WHO to verify the information contained in this publication. However, the published material is being distributed without warranty of any kind, either expressed or implied. The responsibility for the interpretation and use of the material lies with the reader. In no event shall WHO be liable for damages arising from its use. iSupport for dementia. Training and support manual for carers of people with dementia ISBN 978-92-4-151586-3 Layout by Van Cleef Emnacen CONTENTS Module 1. Introduction to dementia 1 Module 2. Being a caregiver 11 Lesson 1. The journey together 12 Lesson 2. Improving communication 24 Lesson 3. Supported decision-making 42 Lesson 4. Involving others 57 Module 3. Caring for me 69 Lesson 1. Reducing stress in everyday life 70 Lesson 2. Making time for pleasant activities 82 Lesson 3. Thinking differently 92 Module 4. Providing everyday care 107 Lesson 1. Eating and drinking - more pleasant mealtimes 108 Lesson 2. Eating, drinking and preventing health problems 121 Lesson 3. Toileting and continence care 128 Lesson 4. Personal care 140 Lesson 5. An enjoyable day 152 Module 5. Dealing with behaviour changes 165 Lesson 1. Introduction to behaviour changes 166 Lesson 2. Memory loss 177 Lesson 3. Aggression 187 Lesson 4. Depression, anxiety and apathy 201 Lesson 5. Difficulty sleeping 210 Lesson 6. Delusions and hallucinations 223 Lesson 7. Repetitive behaviour 231 Lesson 8. Walking and getting lost 237 Lesson 9. Changes in judgement 245 Lesson 10. Putting it all together 257 ACKNOWLEDGEMENTS i PREFACE iii USER GUIDE iv iS u p p o rt In te rv e n ti o n M an u al i Technical Reviewers and Advisors Emiliano Albanese, WHO Collaborating Center for Training and Research in Mental Health, University of Geneva, Switzerland; Nicole Batsch, Alzheimer’s Disease International, London, UK; Upasana Baruah, National Institute of Mental Health and Neurosciences, Bangalore, India; Kiki Edwards, Rossetti Care, Ibadan, Nigeria; Kieren Egan, WHO Collaborating Center for Training and Research in Mental Health, University of Geneva, Switzerland; Mariella Guerra, Instituto de la Memoria, Lima, Peru; Jayna Holroyd-Leduc, University of Calgary, Canada; Timothy Kwok, Jockey Club Centre for Positive Ageing, The Chinese University of Hong Kong, Hong Kong; Marleen Prins, WHO Collaborating Centre for Dissemination of Good Practices in Mental Health, Trimbos-Institute, Utrecht, Netherlands; Santosh Loganathan, National Institute of Mental Health and Neurosciences, Bangalore, India; Prafulla Shivakumar, National Institute of Mental Health and Neurosciences, Bangalore, India; Iris van Asch, WHO Collaborating Centre for Dissemination of Good Practices in Mental Health, Trimbos-Institute, Utrecht, Netherlands; Mathew Varghese, National Institute of Mental Health and Neurosciences, Bangalore, Vision, conceptualization and project management Tarun Dua, Anne Margriet Pot (project manager), Shekhar Saxena, Diana Zandi. Project coordination and editing The team that coordinated the development of the manual, including writing and editing, was comprised of Neerja Chowdhary, Stéfanie Fréel, KAnne Margriet Pot and Katrin Seeher. Contribution Valuable help and advice was received from many organizations, experts, people with dementia, and carers who have contributed to the development of iSupport, including but not limited to those mentioned below. Key Contributions Dolores Gallagher-Thompson, Stanford University, Stanford, USA; Kala Mehta, Stanford University, Stanford, USA; Bernadette Willemse, WHO Collaborating Centre for Dissemination of Good Practices in Mental Health, Trimbos-Institute, Utrecht, Netherlands; Lilly Xiao, Flinders University, Adelaide, Australia. ACKNOWLEDGEMENTS AC KN OW LE DG EM EN TS iS u p p o rt In te rv e n ti o n M an u al ii India; Huali Wang, Dementia Care & Research Center, Peking University Institute of Mental Health, Beijing, China; Marc Wortmann, Marc Wortmann Consulting. WHO Staff, Consultants and Interns Alison Brunier, Kenneth Carswell, Emma Cradock, Sophie D’Souza, Melissa Harper Shehadeh, Marije Kaat, Dévora Kestel, Annet Kleiboer, Harleen Rai, Dag Rekve, Hiral Shah, Mark van Ommeren, Shuo Wang. Administrative Support Caroline Herment, Jacqueline Lashley, Adeline Loo, Ophel Riano. Production Team Development (web version): Iris Rosier, Kirsten van der Werff, Katherina Martin Abello, WHO Collaborating Centre for Dissemination of Good Practices in Mental Health, Trimbos-Institute, Utrecht, Netherlands, in collaboration with; Deepak Bhikharie, Edi Recica, Kees Schouten, Aan Zee, Noordwijk aan zee, Netherlands. Illustrations: Janet van der Werff, Drachten, Netherlands. Graphic design and layout (iSupport manual): Van Cleef Emnacen, Philippines. Editing: Harriet Payne, Alzheimer’s Disease International, London, U.K. Financial Support WHO would like to thank the following countries/agencies for supporting the development and production of iSupport: Alzheimer’s Association, U.S.A.; and, the Ministry of Health, Welfare and Sport, Netherlands. Neither of them are individually responsible in any way for the content, functioning of, or views displayed on iSupport. AC KN OW LE DG EM EN TS iS u p p o rt In te rv e n ti o n M an u al iii Being a carer for someone with dementia may affect one’s physical and mental health, well-being, and social relationships. Long- term care systems must account for the significant emotional, financial and social impact of caregiving on families and relatives, while addressing the needs of people with dementia. This includes providing carers with access to education, skills training, respite and social support through affordable, evidence-based resources. To address this need, the World Health Organization (WHO) has developed iSupport, an online skills training and support programme for carers of people with dementia. This iSupport manual allows carers who do not have access to the internet, or who prefer a manual, to benefit from the tool. The iSupport online programme and manual are currently being field-tested. It is our hope that the programme will be adapted by, and implemented in, many countries around the world. Dévora Kestel Director, Department of Mental Health and Substance Abuse Dementia is a major cause of impairement that affects a person’s memory, thinking and behaviour, and interferes with one’s ability to perform daily activities. It affects people worldwide, in particular older people. Globally, families provide the majority of care to people with dementia. The impact of dementia is significant to the individual who lives with dementia, their families, societies and countries, both in financial terms and human costs. The Global action plan on the public health response to dementia 2017-2025 represents an important step forward in achieving physical, mental and social wellbeing for people with dementia, their carers and families. It is an opportunity for individuals, communities and countries to realize the vision of a world in which dementia is prevented and people with dementia and their carers receive the care and support they need to fulfil their potential with dignity, respect, autonomy and equality. P R E FA C E PR EF AC E PREFACE iS u p p o rt In te rv e n ti o n M an u al iv What is included in the iSupport manual? The manual is organized into five modules (see Figure 1 page vi): (1) introduction to dementia; (2) being a carer; (3) caring for me; (4) providing everyday care; and (5) dealing with behaviour changes that might happen in people living with dementia. Module 1 provides an introduction to what dementia is, including what happens to people with dementia and what to do if you think that your family member or friend has dementia. Module 2 focuses on improving communication, shared decision-making and involving others in caring for the person living with dementia. Module 3 aims to reduce carer stress by making time for pleasant activities and thinking differently. Module 4 focuses on eating and drinking, including creating more pleasant mealtimes and preventing health problems, using the toilet and continence care, and personal care. Worldwide, carers of people with dementia should have access to information and support tailored to their needs in order to effectively respond to, and manage, the physical, mental and social demands associated with caring for someone living with dementia. iSupport has been developed to provide accessible, evidence-based training and information, tailored to carers’ needs. It aims to improve knowledge and caregiving skills, such as carers’ ability to cope with dementia symptoms and care for themselves. iSupport seeks to enable people with dementia to live in the community while preventing or reducing carer stress. The lessons included in this manual were carefully designed to help carers tackle the important challenges that they may face when caring for someone living with dementia. US ER G UI DE USER GUIDE iS u p p o rt In te rv e n ti o n M an u al v Finally, Module 5 provides an introduction to common changes in behaviour for people with dementia that might be distressing and upsetting for both the person with dementia and you as the carer. These symptoms include memory loss, aggression, depression and anxiety, difficulty sleeping, delusions and hallucinations, repetitive behaviour, walking and getting lost as well as poor or decreased judgement. Who is the target audience? This iSupport manual is primarily for carers of people with dementia, including family members and relatives, friends, and other carers. However, iSupport may also be of interest to others, for example: z nongovernmental organizations (NGOs) providing skills training, support and/or information to carers of people with dementia; z health and social care workers providing care and information to carers of people with dementia; and z private sector representatives involved in the development of health technologies for dementia, dementia health care service delivery or health care insurance. US ER G UI DE iSUPPORT Caring for me MODULE 3 Being a carer MODULE 2 Providing everyday care MODULE 4 Dealing with behaviour changes MODULE 5 What is dementia and how does it affect someone The journey together Reducing stress in everday life Eating and drinking: more pleasant mealtimes Introduction Delusions and hallucinations Repetitive behaviours Eating and drinking: preventing health problems Memory loss Walking and getting lost Using the toilet and continence care Aggression Poor or decreased judgement Personal care Depression and anxiety Putting it all together An enjoyable day Difficulty sleeping Doing pleasant activities Thinking differently Improving communication Supported decision-making Involving others Introduction to dementia MODULE 1 vi Figure 1 iS u p p o rt In te rv e n ti o n M an u al vii How to use this iSupport manual? iSupport has been developed as a self-help tool for carers of people living with dementia. Each module is divided into individual lessons (see Figure 1). All lessons are structured in the same way. At the beginning, there is an overview of why the lesson is important, how the lesson will help you as a carer and what you will learn. Each lesson then consists of a mixture of brief reading to provide new information, descriptive examples, multiple choice questions and activities to practice what you have learned. You may choose to work through the entire manual from beginning to end or select the lessons that are most relevant to your everyday life. You can also come back to individual lessons. How was iSupport developed? iSupport is grounded in WHO’s Mental Health Gap Action Programme (mhGAP) guidelines for carers of people with dementia. mhGAP aims to scale health and social care services for mental, neurological and substance use disorders for all countries, with a focus on low- and middle-income countries (LMICs). iSupport was developed based on evidence related to the feasibility and effectiveness of carer training and support interventions, both in person and online. Finally, the programme was developed in collaboration with international experts in the field of caregiving for people with dementia and internet-based interventions, and reflects the voices of carers of people with dementia. For more information on the development of iSupport see Pot et al (2019)1. US ER G UI DE 1 Pot AM, Gallagher-Thompson D, Xiao LD, Willemse BM, Rosier I, Mehta KM, Zandi D, Dua T. iSupport: a WHO global online intervention for informal carers of people with dementia. World Psychiatry. 2019. iS u p p o rt In te rv e n ti o n M an u al viii These exercises will help you feel calm and reduce stress. We include one relaxation activity at the end of each lesson. There is also an entire lesson on relaxation activities included in Module 3. Relaxation activity Tip/Reminder/Keep in Mind Tips help you reflect on your learning or give practical reminders of how to apply what you have learned to your everyday life. Activity Here you will be asked to reflect upon how caregiving for a person with dementia is affecting your life or the life of the person with dementia. Example. How are you feeling right now? Please select all that apply. † Sad † Happy † Angry † ConfusedCheck your understanding Here you will be asked a question about what you have learned. Answers are at the end of every lesson. Example: What color is the sky? † Green † Blue † Red † Orange US ER G UI DE Below is a guide to the individual exercises and activities that you will encounter throughout the manual. These exercises and activities allow for you to check your understanding and reflect on your learning in practical ways. iS u p p o rt In te rv e n ti o n M an u al ix Other uses of iSupport Although iSupport is primarily a self-help tool, we encourage a broader use. For example, iSupport might be supplemented by guidance from volunteers or health care workers to create more impact. The iSupport manual can also serve as a tool to structure educational or support group meetings for carers of people with dementia, or it may simply be used as a resource tool for participants of self-help groups. Finally, health care workers might find iSupport useful in assisting and supporting carers. Please note that both the iSupport online training programme and this manual are subject to ongoing rigorous field-testing and evaluation. More research is needed to evaluate the effectiveness of local adaptions and implementations. How to adapt iSupport? The iSupport manual represents a template that can be adapted to national or local contexts and needs. An adaptation and implementation guide is available to assist countries/communities in this process. WHO owns the copyright on iSupport. If you are interested in adapting and implementing iSupport, please contact WHO at whodementia@who.int to request a copyright license. This applies to both the iSupport manual and the online programme, accessible at www.iSupportForDementia.org. US ER G UI DE M od ul e 1 . I nt ro du ct io n to d em en tia M od ul e 1 . I nt ro du ct io n to d em en tia INTRODUCTION TO DEMENTIA 1 MODULE iS u p p o rt In te rv e n ti o n M an u al 2 Introduction to dementia Why is this lesson important? Dementia is a disease that can be overwhelming for the person with dementia, but also for you as a carer. There are many myths about dementia and learning more will help explain some common misunderstandings. How will this lesson help me? This lesson helps you to understand the basics of what dementia is and how it affects someone. This information is essential when you are a carer. What will I learn? 1. What is dementia? 2. What causes dementia? 3. What happens to people with dementia as the disease progresses? 4. What to do if you think that the person you care for has dementia? 5. How to reach out for help? 6. What is the focus of this manual? MODULE 1 In tro du ct io n to d em en tia iS u p p o rt In te rv e n ti o n M an u al 3 1. What is dementia? Dementia occurs as a result of a disease process that increasingly damages the brain over time. Dementia affects all groups of society and is not linked to social class, gender, ethnic group, or geographic location. Dementia is not a part of normal ageing. Although dementia is more common among older people, younger people can also be affected. 2. What causes dementia? Dementia is caused by a number of diseases which destroy nerve cells and damage the brain, as outlined below. Alzheimer’s disease Alzheimer’s disease is the most common cause of dementia. It destroys brain cells and nerves, disrupting the transmitters that carry messages in the brain, particularly those responsible for storing memories. Vascular dementia Vascular dementia occurs where blood vessels are damaged, the supply of oxygen to the brain fails and as a result, brain cells die. The symptoms of vascular dementia can occur either suddenly, following a stroke, or over time, through a series of small strokes. Vascular dementia accounts for 20%-30% of all cases of dementia. Dementia with Lewy bodies Dementia with Lewy bodies is similar to Alzheimer’s disease in that it is caused by deteriorating and dying nerve cells in the brain. It takes its name from abnormal deposits of protein - Lewy bodies - in the nerve cells of the brain. It may account for around 10% of all cases of dementia. Approximately, half the people with Lewy body disease also develop signs and symptoms of Parkinson’s disease. MODULE 1 In tro du ct io n to d em en tia iS u p p o rt In te rv e n ti o n M an u al 4 Fronto-temporal dementia In fronto-temporal dementia - including Pick’s disease - damage is usually concentrated in the front part of the brain. In the beginning, personality and behaviour are more affected than memory. Rarer causes of dementia There are many other rarer causes of dementia, such as alcohol-related dementia and dementia due to HIV/AIDS. 3. What happens to people with dementia as the disease progresses? Every person is unique and dementia affects people differently. No two people will develop the same difficulties in exactly the same way. It is not just the brain damage that determines how dementia affects someone, but also other factors including an individual’s personality, life course, general health and functioning, and living environment. MODULE 1 People with dementia often forget things or have trouble with their memory. Select the correct answer. „ TRUE „ FALSE 1. Check your understanding What happens to people with dementia? In tro du ct io n to d em en tia iS u p p o rt In te rv e n ti o n M an u al 5 Dementia symptoms can range from minor memory loss to severe difficulties in memory and thinking that make it impossible to manage daily activities without help. It can be helpful to view dementia as a series of stages to understand the illness. However, it is important to realize that this only provides a rough guide to the progress of dementia. Not all people with dementia will have all symptoms and some of the symptoms may only appear at one stage of the disease. In the early stage of the disease, people with dementia may have memory problems, become disoriented with respect to time, lost in familiar places and show difficulties making decisions. As dementia progresses to the middle stage, people with dementia may become very forgetful and in need of help with daily activities such as shopping, dressing, and washing. Dementia has stages In the late stage, people with dementia may not recognize relatives or friends anymore may display changes in behaviour that can be upsetting and distressing to the person with dementia and those around them. MODULE 1 In tro du ct io n to d em en tia iS u p p o rt In te rv e n ti o n M an u al 6 Here are some common things that may happen to people with dementia. Do you think that your family member/friend/the person that you care for experiences any of the following? Please select all that apply. 1. Activity Does the person you care for… Have trouble remembering things that happened minutes before? Find it difficult to perform daily activities? Struggle to identify time or place? Communicate differently than they did before? Misplace things? Withdraw socially? Show changes in feelings or personality? „ Yes „ No „ Yes „ No „ Yes „ No „ Yes „ No „ Yes „ No „ Yes „ No „ Yes „ No zz Forgetting recent events zz Repeating questions zz Money management zz Shopping zz Preparing dinner zz Forgetting the date and time of appointments zz Difficulty expressing oneself zz Difficulty finding the right words zz Not finding common objects, such as keys zz Suspecting things are stolen zz Showing decline in social activity zz Lacking urge to do something zz Having a lot of ups and downs zz Becoming more anxious than before Examples MODULE 1 In tro du ct io n to d em en tia iS u p p o rt In te rv e n ti o n M an u al 7 4. What to do if you think that the person you care for has dementia? If you think that a family member or friend may have dementia, a good first step is to make sure that they see a medical doctor. The doctor will examine their body and brain functioning. One important point to rule out is whether the person’s memory problems are caused by other treatable conditions such as depression, urinary tract infection, medication side effects, lack of vitamins or a brain tumor. It is important to identify whether the person’s memory problems are really part of dementia or are part of something else. Only a medical doctor can do this, not this manual. What is the first step if you think that a family member or friend has dementia? Please put a check mark () in front of the answers that you think are correct and a cross () in front of those that are wrong. „ Call a friend or relative. „ Use iSupport alone for help. „ Call a medical doctor’s office and make an appointment. „ The person has been to a medical doctor already and has been diagnosed with dementia. First steps MODULE 1 2. Check your understanding What to do if you think that the person you care for has dementia? In tro du ct io n to d em en tia iS u p p o rt In te rv e n ti o n M an u al 8 5. How to reach out for help? It is important to realize that you, alone, are not going to be able to provide all the care that the person living with dementia needs, especially not as things get more complex over time. So, we encourage you to reach out to family members, friends, and professional organizations or services for help. In many countries there are several resources that are very helpful. Some are free while others are not. Please contact your local Alzheimer’s Association for information, support and care that is available in your area and could benefit the person you care for as well as yourself. 6. What is the focus of this manual? The focus is on you, a carer of someone with dementia. Dementia can be overwhelming. For this reason, iSupport provides you with support to cope with caregiving on a day- to-day basis. It is really important that you not only take care of the person living with dementia but also take care of yourself. iSupport will show you how. It will also show you some common scenarios that might happen with people with dementia so that you are aware and can practice how to respond to such situations. Keep in Mind z Dementia affects a person’s brain. z Dementia is common, especially in older people. z Dementia is a disease, not a part of ageing. z As a first step it is important to see a medical doctor, if possible. z It is important for you to take care of yourself, not only the person you care for. z iSupport can support you as a carer. MODULE 1 In tro du ct io n to d em en tia iS u p p o rt In te rv e n ti o n M an u al 9 MODULE 1 In tro du ct io n to d em en tia You finished this lesson, well done! iS u p p o rt In te rv e n ti o n M an u al 10 People with dementia often forget things or have trouble with their memory. 9 True: This is the correct answer. 8 False: This is the incorrect answer. The right answer is that people with dementia often forget things or have trouble with their memory. What is the first step if you think that the person you care for has dementia? 8 ✗Call a friend or relative While friends and family can offer support, this cannot replace a medical exam given by a certified medical doctor. 8 Use iSupport alone for help While this manual provides information and support, it cannot replace a medical exam given by a certified medical doctor. 9 Call a medical doctor’s office and make an appointment This is the best first step if you have not done so already. 9 The person has been to a medical doctor already and has been diagnosed with dementia You have already completed the first important step. MODULE 1 1. Check your understanding What happens to people with dementia? 2. Check your understanding What to do if you think that the person you care for has dementia? ANSWERS - INTRODUCTION TO DEMENTIA AN SW ER S - IN TR OD UC TI ON TO D EM EN TI A M od ul e 2 . B ein g a c ar eg ive r BEING A CARER Lesson 1. The journey together Lesson 2. Improving communication Lesson 3. Supported decision-making Lesson 4. Involving others 2 MODULE iS u p p o rt In te rv e n ti o n M an u al 12 1. How may your roles change over time? You may feel as if your role is changing. In the early stages of dementia, you may still be able to enjoy many different activities together. As dementia progresses, the person will have more difficulty with everyday tasks. This will require a carer to do more to help with everyday life, such as giving medications and taking the person with dementia to appointments. In the middle and later stages of dementia, a carer might need to do even more for the person with dementia. This may include personal care, such as bathing, going to the toilet and dressing. Some tasks may be challenging for carers and cause stress. Why is this lesson important? Dealing with dementia is a journey you will take together, because it changes the daily life of both the person living with dementia and the carer. How will this lesson help me? This lesson teaches you skills for your journey together: to stay connected, involve others, take care of yourself, and plan for the future. What will I learn? 1. How may your roles change over time? 2. How to stay connected with the person you care for? 3. How to plan pleasant activities and relaxation? 4. How to involve others? 5. How to plan well for the future? Lesson 1. The journey together MODULE 2 Le ss on 1 . T he jo ur ne y t og et he r iS u p p o rt In te rv e n ti o n M an u al 13 Olivia has dementia and lives with her husband Jacob. During the past few months, Olivia’s memory loss seems to be more frequent. The last few times Olivia went shopping, she could not remember what to buy. She came home with the wrong things, which was frustrating. Let's look at an example How should Jacob approach Olivia about what happened? Check all the responses you feel are appropriate. „ Leave Olivia alone and see what happens. „ Ask Olivia to ‘work harder’ to remember things. „ Do not let Olivia shop anymore. „ Ask Olivia how she feels about her memory loss. „ Do not blame Olivia, but make a shopping list together with her each time prior to shopping. 1. Check your understanding Frustration about memory loss. MODULE 2 Le ss on 1 . T he jo ur ne y t og et he r iS u p p o rt In te rv e n ti o n M an u al 14 2. How to stay connected with the person with dementia? Here are some small tips to help you communicate better with someone living with dementia: z use simple sentences; z try to stay in control of your feelings; z create time for yourself and for each other. For more tips on how to improve communication with the person living with dementia, including in the later stages of the disease, read Lesson 2. Improving communication in this module. Tip MODULE 2 Le ss on 1 . T he jo ur ne y t og et he r It is important to keep talking together. The sooner you start talking about dementia and its effects on you and the person you care for, the better. Dementia will make doing this more difficult as time goes by. Talk about the changes happening now and what might happen in the future. Stay connected with each other and discuss the changes that may occur over time. It is important to keep talking together. iS u p p o rt In te rv e n ti o n M an u al 15 Providing care may become increasingly time consuming as the disease progresses. Sometimes carers do not take enough time for themselves. It is really important to try and take care of yourself as best as you can, as some carers may break down from the stress. Part of the journey together should include planning pleasant activities and relaxation for yourself. For more tips on how to relax, read Lesson 1. Reducing stress in everyday life in Module 3. For more tips on how to stay in control of your feelings read Lesson 3. Thinking differently in Module 3. For more tips on how to plan pleasant activities for yourself, read Lesson 2. Making time for pleasant activities in Module 3. 3. How to plan pleasant activities and relaxation? MODULE 2 Le ss on 1 . T he jo ur ne y t og et he r Taking care of yourself is important. iS u p p o rt In te rv e n ti o n M an u al 16 Caregiving can sometimes challenge friendships and relationships. It is common for people providing care to feel that no one understands what they are going through. Talking about your thoughts and feelings with others might help make you feel better. 4. How to involve others? Caring for someone with dementia does not have to be a lonely experience. Let friends and family members know when you could use a break. Caring for a loved one with dementia is sometimes too big a job for one person. Molly’s mother-in-law, Jess, has dementia. Molly has a big deadline at work and needs to leave at 7:30 the next morning. The paid in-home helper is not able to arrive until 9:00 in the morning. This leaves Jess alone for over an hour. Molly wonders whether it would be okay to leave Jess alone and feels stressed because she is not sure what to do. How could Molly deal with the situation? Check all of the responses that you feel are appropriate. „ Leave Jess alone and see what happens. „ Ask a neighbour to come visit Jess until the paid in- home helper arrives. „ Ask Jess to ‘take care of herself’. „ Ask her husband to go into work late so he can be with Jess until the paid in-home helper arrives. „ Ask the paid in-home helper to come in early. 2. Check your understanding Feeling stressed due to conflicting duties. MODULE 2 Le ss on 1 . T he jo ur ne y t og et he r iS u p p o rt In te rv e n ti o n M an u al 17 5. How to plan well for the future? Preparing for the future is a topic that will need to be discussed. You will need to make decisions with the person you care for about preferences for who might provide care, planning for the costs of future care needs, and preferences in case of more advanced care needs and end of life decisions. Many people providing care, like you, worry about the future. The earlier you plan for the future, the better and easier it will be for you. Planning early will also ensure that the person you care for will be better able to say what their wishes are. Where possible, discuss topics that concern you. Here are some common questions that carers have. You may want to discuss these with the person you care for. Write down the responses to the questions. What are the person’s preferences when they are no longer able to bathe themselves? For example, would they prefer a male or female to help bathe them? How do they feel about having a close family member bathe them or would they prefer a qualified professional who is unrelated? What does the person you care for want to do themselves for as long as possible? MODULE 2 Le ss on 1 . T he jo ur ne y t og et he r 1. Activity iS u p p o rt In te rv e n ti o n M an u al 18 MODULE 2 Le ss on 1 . T he jo ur ne y t og et he r 1. Activity What are their wishes at the end of life? If you find it helpful, please write down the questions that you might want to discuss in the space below. If more assistance is needed at home, what kind of help would the person you care for prefer now and/or in the future? iS u p p o rt In te rv e n ti o n M an u al 19 What are some ways that Jacob and Olivia can maintain their intimacy as Olivia’s dementia progresses? Think about it before reading on. MODULE 2 Le ss on 1 . T he jo ur ne y t og et he r 2. Activity Let’s revisit the scenario with Olivia and Jacob Intimate relationships may change As you progress through the journey together, partners may experience some changes in their intimate relationship. At first, sexual relationships between partners may still be possible. As the disease progresses, sexual relationships and physical intimacy may become more difficult. Olivia is in the early stages of dementia and lives with her husband Jacob. Olivia and Jacob have a healthy, mutually satisfying physical relationship, but Jacob is worried about the day when these relations may stop. iS u p p o rt In te rv e n ti o n M an u al 20 Ways to stay connected z Use touch, hold hands or do a gentle massage to communicate warmth, connection, safety and love. z Use music – it is truly a universal language. Play music that the person you care for likes and that makes them feel good. z Try to maintain your sense of humour. This will help reduce frustration and tension. z Talk with them about what they like and need – it’s an important conversation to have more than once, as things change over time. z It is okay to take a break. z It is okay to ask for help. z It is okay to feel frustrated sometimes. z It is okay to feel lonely sometimes if you feel that the person you care for is no longer able to meaningfully communicate with you. Taking care of yourself One of the most important things to remember as roles change is that you, as someone providing care for a person with dementia, need to care for yourself too. Throughout this manual we will teach you ways to do this. Here are some tips for partners on how to maintain intimacy, even when sexual relations may no longer be possible with the person living with dementia. MODULE 2 Le ss on 1 . T he jo ur ne y t og et he r Tip Reminder iS u p p o rt In te rv e n ti o n M an u al 21 z As your role changes, it is important to stay connected during your journey together. z Make sure that you plan pleasant activities and relaxation so that your role does not become overwhelming. z Ask for help because providing care to someone with dementia can be tiring. z Make sure that you plan well for the future. z There are many different ways to maintain intimacy and stay connected. Let’s review what you have learned For more tips on how to relax, read Lesson 1. Reducing stress in everyday life in Module 3. MODULE 2 Le ss on 1 . T he jo ur ne y t og et he r You finished this lesson, well done! iS u p p o rt In te rv e n ti o n M an u al 22 9 Ask Olivia how she feels about her memory loss This is a good response because Jacob is addressing the issue by discussing its impact on Olivia and staying ‘connected’. Jacob could also share his own worries about he memory loss. 9 Do not blame Olivia, but make a shopping list together with her each time prior to shopping. This is a very good response, because this will help Olivia to continue shopping and maintain her independence as long as possible. How should Jacob approach Olivia about what happened? 8 Leave Olivia alone and see what happens This is not a helpful response, because Olivia and Jacob both feel frustrated. To stay connected it is important to talk about their frustration and worries about the future. 8 Ask Olivia to ‘work harder’ to remember things This is not a good response, because memory loss is part of living with dementia, it is unlikely to change. 8 Do not let Olivia shop anymore. This is not a good response because doing the shopping is important to Olivia. Shopping may give Olivia purpose in life and a feeling of dignity. ANSWERS - BEING A CARER Lesson 1. The journey together MODULE 2 1. Check your understanding Frustration about memory loss. AN SW ER S - B EI NG A C AR ER • Le ss on 1 iS u p p o rt In te rv e n ti o n M an u al 23 How could Molly deal with the situation? 9 Ask a neighbour to come visit Jess until the paid in- home helper arrives. This is helpful because it ensures Jess’ safety. Molly can do her work and also gets a short break from caregiving. 9 Ask her husband to go into work late so that he can be with Jess until the paid in-home helper arrives. This is a good response. It shows that Molly is trying to involve her family members for support and gives her the break that she needs. 9 Ask the paid-in home helper to come in early. This is a good response but it may not be possible because of the short notice. 8 Leave Jess alone and see what happens. This is not a good response, because it potentially puts Jess in danger and Molly will not be able to perform well at work with the added stress of leaving Jess. 8 Ask Jess to ‘take care of herself’. This is not a good response because her dependence on others is part of living with dementia and unlikely to change. MODULE 2 2. Check your understanding Feeling stressed due to conflicting duties. AN SW ER S - B EI NG A C AR ER • Le ss on 1 iS u p p o rt In te rv e n ti o n M an u al 24 Why is this lesson important? Dementia can often make communication difficult. How will this lesson help me? This lesson helps you to talk in a simple and direct way and show your compassion in everyday situations. What will I learn? 1. How to improve communication? 2. How to check the person’s ability to hear and see? 3. How to get attention in a respectful way? 4. How to keep it simple? 5. How to take the person seriously? 6. How to pay attention to reactions? 7. How to give compliments? 8. How to show compassion? 1. How to improve communication? In this lesson you will learn about tools and tips for good communication. Dementia can often make communication difficult. This can have an impact on your relationship with the person you care for. It can even make them or you frustrated, sad or angry. When you communicate with the person you care for, for example by talking to them or giving them a hug, make sure that they understand what you mean by your action and that you understand them too. Lesson 2. Improving communication MODULE 2 Le ss on 2 . I m pr ov in g co m m un ica tio n iS u p p o rt In te rv e n ti o n M an u al 25 For all communication - talking, touching or gestures – the basics, like the ability to see and hear, are important. Unfortunately, dementia may impair someone’s ability to hear and see. Therefore, it is important that you check whether the person's hearing and sight could be improved by making changes in their environment or arranging for any relevant medical check-ups. 2. How to check the person’s ability to hear and see?Show compassion by listening, take the person you care for seriously, treat them with respect and dignity, show interest, or give them a smile or a hug. This is very important for every human being, including people with dementia. In this lesson we help you to show compassion. Some important basic skills for communication will be explained. MODULE 2 Le ss on 2 . I m pr ov in g co m m un ica tio n Imagine for a moment that you are living with dementia. What would you like other people to do? Please select all that apply. „ Listen to how you feel. „ Talk behind your back. „ Give you a smile. „ Say that they do not care. „ Tell you that they love you. „ Treat you like a child. „ Approach you with respect and dignity. 1. Check your understanding Imagine that you are living with dementia. iS u p p o rt In te rv e n ti o n M an u al 26 Exercise to improve sight The ability to see is important for communication. Check the items below to help improve sight. In general, people with dementia need more light to see clearly. Increase light levels and use daylight where possible. It will help the person living with dementia to see well. You may also think of leaving lights on at night so the person can find the bathroom. Dementia can make it hard to see contrasts. For example, if there is a white plate on a white table, people with dementia may have difficulty seeing the plate. A coloured plate or tablecloth may help. Does the person living with dementia lose or misplace their glasses frequently? Encourage them to always put the glasses in the same spot to reduce frustration over having to look for them. Sometimes a neck cord is also helpful in that case. If the person living with dementia wears glasses, check whether they are clean and still comfortable to wear. Are the glasses comfortable around the ears and nose? If the person living with dementia does not have glasses, but cannot see well anymore, consult a doctor. If the person living with dementia wears glasses, check to see if the prescription is still accurate, or consult a doctor. Is there enough light? „ Yes „ No „ Yes „ No „ Yes „ No „ Yes „ No „ Yes „ No Is there enough contrast in colours? Is the person living with dementia wearing their glasses? Are the glasses still okay? Do you need to consult a doctor? Tips 1. Activity MODULE 2 Le ss on 2 . I m pr ov in g co m m un ica tio n iS u p p o rt In te rv e n ti o n M an u al 27 Exercise to help improve hearing The ability to see is important for communication. Check the items below to help improve hearing. Minimizing background noise will help to improve hearing. Perhaps take the person living with dementia to a quieter location with fewer distractions. Turn off the television or radio when trying to communicate with them. The person living with dementia may forget to wear the hearing aid or require help or assistance with putting it in properly. If the person living with dementia is wearing a hearing aid, check whether it is clean, fits snugly in the ear canal, is still comfortable to wear and the batteries are charged. If the person living with dementia wears a hearing aid, check if the prescription is still accurate, or whether you need to consult a doctor. If the person living with dementia does not have a hearing aid, but cannot hear well anymore, you should also consult a doctor. Is there too much noise? Is the hearing aid still okay? Do you need to consult a doctor? If the person living with dementia has a hearing aid, is he/she wearing it? Tips MODULE 2 Le ss on 2 . I m pr ov in g co m m un ica tio n 2. Activity „ Yes „ No „ Yes „ No „ Yes „ No „ Yes „ No iS u p p o rt In te rv e n ti o n M an u al 28 3. How to get attention in a respectful way? The person living with dementia is a person with feelings, no matter how serious the disease is or how advanced communication problems are. Therefore, an important first step is to make contact with the person you care for by catching their attention. Below are some suggestions regarding how to capture the attention of a person living with dementia. Please put a check mark () in front of the answers that you think are correct and a cross () in front of those that are wrong. „ Raise your voice or shout. „ Speak clearly and slowly, at a volume that is comfortable for the person, face to face and at eye level. „ Tap a hand, arm or front of the shoulder. „ Stop and hold the person to make him or her listen. „ Approach the person from the back and touch their shoulder. „ Call the person living with dementia by a name that they recognize. MODULE 2 Le ss on 2 . I m pr ov in g co m m un ica tio n 2. Check your understanding Get attention in a respectful way. z Gaining attention is a first important step for good communication. z There are different ways to gain the attention of a person living with dementia in a respectful manner. Remember iS u p p o rt In te rv e n ti o n M an u al 29 Jonathan takes care of his father who has dementia. Jonathan notices that his father does not understand him. Can you tell why? Check the items in the list below that you think could impair communication between Jonathan and his father. „ The radio is on. „ Jonathan is making a phone call. „ Jonathan asks multiple questions at the same time. z Ask or tell the person living with dementia one thing at a time. z Use simple language and keep sentences short. Avoid long and complicated sentences, focus on one subject at a time. z When needed, change from open-ended to closed-ended questions that can be answered with YES or NO. z Make sure there are no distracting background noises such as a television or radio. Often the language we use to get a message across is too complicated. Keeping it simple will help the person you care for understand you better. 4. How to keep it simple? MODULE 2 Le ss on 2 . I m pr ov in g co m m un ica tio n Keep in Mind 3. Check your understanding Keep it simple. iS u p p o rt In te rv e n ti o n M an u al 30 At some point, you may not understand what the person you care for means. The language they use may even seem strange or funny. However, it is important that you take them seriously. The person you care for is trying to tell you something, even though their communication skills may be impaired due to the dementia. 5. How to take the person seriously? MODULE 2 Le ss on 2 . I m pr ov in g co m m un ica tio n It is important that you take the person you care for seriously. iS u p p o rt In te rv e n ti o n M an u al 31 John is visiting his father who has dementia. When his father wants to describe his morning to John, he cannot find the right words. John says to his wife in front of his father: “I have no clue what he means!” His wife answers: “Yes, I don’t know either. He is just like a child!” Let's look at an exampleMODULE 2 Le ss on 2 . I m pr ov in g co m m un ica tio n Which of the following statements do you think is correct? Check all the responses that you feel are appropriate. „ John should not talk about his father when he is in same the room. John could have said: “It is difficult to understand what you mean.” In addition, he could have asked some questions that his father could have answered with ‘YES’ or ‘NO’. For example: “Have you gone outside this morning?” „ John and his wife could be more patient. „ John and his wife could ask John’s father if it is okay when they try to guess what he wants to say. „ It is important that John and his wife talk about the difficulty to understand John’s father in front of him. „ His wife is right: a person living with dementia is just like a child. 4. Check your understanding Take the person seriously. z It is important to take the person that you are caring for seriously and treat them with respect and dignity. z Do not talk about them in their presence. z Be patient and give them time to find the right words. z When the person you care for is difficult to understand, it may help to ask closed- ended questions that can be answered with YES or NO to understand what they mean. Remember iS u p p o rt In te rv e n ti o n M an u al 32 Take a look at the cartoons below. Do you understand these feelings? Select the right answer for each cartoon. You can tell a lot from the way someone speaks and looks. For example, if someone is smiling, you can assume that this person is in a good mood. Keeping this in mind will help you communicate with the person you care for. 6. How to pay attention to reactions? Happy Angry Sad Scared Happy Angry Sad Scared Happy Angry Sad Scared Happy Angry Sad Scared z Facial expressions and body language tell us how a person is feeling. Other examples of body language include fidgeting, having arms crossed or pacing. These can give us messages about how the person may be feeling. For example whether the person may be nervous, upset or anxious. z Take notice of the responses and body language of the person you care for. MODULE 2 Le ss on 2 . I m pr ov in g co m m un ica tio n 5. Check your understanding Pay attention to reactions. Keep in Mind iS u p p o rt In te rv e n ti o n M an u al 33 7. How to give compliments? Complimenting the person you care for is important. In general, it is much more effective to say what someone is doing well, than to say what they are doing wrong. A compliment can range from commenting that someone has done something well to saying that they look nice. You can give compliments in different ways and in different situations. Here is a list of statements. These statements include several compliments. However, there are also some statements that are not compliments. Please put a check mark () in front of the statements that are compliments and a cross () in front of those that are not. „ You look beautiful. „ You are good at ... „ What are you doing?! Stop it! „ You are very helpful. Thank you. „ You are making a mess. „ You should be ashamed of forgetting everything. „ I love having you around. „ You are driving me crazy. „ You have a great smile. Statements MODULE 2 z The person you care for will feel good if you say something positive. z Compliments can be given in many different ways. z Saying something negative will make a person feel bad. Keep in Mind 6. Check your understanding Give compliments. Le ss on 2 . I m pr ov in g co m m un ica tio n iS u p p o rt In te rv e n ti o n M an u al 34 Think about all the things that you like about the person you care for. Now try to write down something you would say to give them a compliment. MODULE 2 3. Activity Le ss on 2 . I m pr ov in g co m m un ica tio n iS u p p o rt In te rv e n ti o n M an u al 35 It is important that you show compassion, even if a person living with dementia is repeating the same questions over and over again, or understanding each other becomes increasingly difficult. You need to remember that dementia is a disease that can make communication difficult. For example, a person living with dementia may have forgotten what they just said. You need to use extra effort and be patient with the person you care for. 8. How to show compassion? MODULE 2 Le ss on 2 . I m pr ov in g co m m un ica tio n William often visits his sister, Elena, who lives with dementia. Elena’s husband passed away six months ago. When William is visiting, Elena often asks where her husband is. William finds this difficult. He knows Elena is missing her husband and may have forgotten that he died. William tries to distract her by asking questions about other things, such as: ”How was your day?” Elena persists in asking where her husband is. Today William tries a different approach William says to Elena: “It must be difficult for you that he died”. He gives Elena a hug. William shows Elena some pictures of her husband that he brought from home and talks to her about her husband. William showed that he understands that Elena is missing her husband and tries to support her. Let's look at an example Did William respond well? Please select the correct answer below. „ YES „ NO Did William respond well? Please select the correct answer below. „ YES „ NO 7. Check your understanding How to show compassion (1). 8. Check your understanding How to show compassion (2). iS u p p o rt In te rv e n ti o n M an u al 36 Keep in mind that people with dementia also have the right to grieve the loss of a loved one in a safe and supportive setting. The example of William and his sister, Elena, shows that: z You can show compassion in different ways. z It is important to take a person living with dementia seriously and to pay attention to the questions they have. z Showing compassion helps to improve your relationship with the person you care for. You have practiced the following communication skills: z check ability to hear and see; z get attention in a respectful way; z keep it simple; z take the person seriously; z pay attention to reactions; z give compliments; z show compassion. Let’s review what you have learned MODULE 2 Le ss on 2 . I m pr ov in g co m m un ica tio n You finished this lesson, well done! iS u p p o rt In te rv e n ti o n M an u al 37 MODULE 2 ANSWERS - BEING A CARER Lesson 2. Improving communications What would you like other people to do? 9 Listen to how you feel 8 Talk behind your back 9 Smile at you 8 Say that they do not care 9 Tell you that they love you 8 Treat you like a child 9 Approach you with respect and dignity 1. Check your understanding Imagine that you are living with dementia. AN SW ER S - B EI NG A C AR ER • Le ss on 2 iS u p p o rt In te rv e n ti o n M an u al 38 MODULE 2 8 ✗Stop and hold the person to make them listen. This is not a respectful way to get attention. It may even make the person living with dementia feel distressed or angry. 8 Approach from the back and touch the person’s shoulder. This may startle someone who is not expecting you or perhaps did not hear you coming. 9 Call the person living with dementia by a name that he or she recognizes. This is a good way to attract the attention of a person living with dementia. You might use their first name or a nickname that was used in the past. Below are some suggested ways to get the attention of a person living with dementia. What are the right and wrong answers? ✗ 8 Raise your voice or shout. Raising your voice is not a respectful way to gain attention. It may even make the person living with dementia feel sad, frustrated or angry. 9 Speak clearly, slowly, at a volume that is comfortable for the person, face to face and at eye level. This is an appropriate way to make contact. It shows that you are seeking contact in a respectful manner. 9 Tap a hand, arm or front of the shoulder. This is a good way to attract the attention of a person living with dementia. 2. Check your understanding Get attention in a respectful way. AN SW ER S - B EI NG A C AR ER • Le ss on 2 iS u p p o rt In te rv e n ti o n M an u al 39 Jonathan takes care of his father who has dementia. Jonathan notices that his father does not understand him. Can you tell why? 9 The radio is on. Very good! A radio can be very distracting. It makes it difficult to follow what someone else is saying, especially for people with dementia who can have difficulty concentrating. 9 Jonathan is making a phone call. Very good! Making a phone call does not show interest and will confuse his father. It’s important for people with dementia to try and stay focused on one task. It will be difficult to get back on the same subject after making a phone call. 9 Jonathan asks multiple questions at the same time. Correct! Asking too many questions at the same time makes it difficult for his father to understand. MODULE 2 3. Check your understanding Keep it simple. AN SW ER S - B EI NG A C AR ER • Le ss on 2 Which of the following statements do you think is correct? 9 John should not talk about his father when his father is in same the room. He could have said, “It is difficult to understand what you mean.” In addition, he could have asked some questions that his father could have answered with ‘YES’ or ‘NO’. For example: “have you gone outside this morning?” Correct! John takes his father seriously when trying to understand what he wants to say. Do not talk about the person you care for while they are in the same room. 9 John and his wife could be more patient. Correct! It takes people with dementia longer to find the right words and they need time and patience to be understood. 4. Check your understanding Pay attention to reactions. iS u p p o rt In te rv e n ti o n M an u al 40 MODULE 2 AN SW ER S - B EI NG A C AR ER • Le ss on 2 Take a look at the cartoons below. Do you understand this feeling? Select the right answer below. Happy 9 Angry Sad Scared 9 Happy Angry Sad Scared Happy Angry 9 Sad Scared Happy Angry Sad 9 Scared 5. Check your understanding Pay attention to reactions. 9 You look beautiful. 9 You are good at … 8 What are you doing?! Stop it! 8 You are very helpful. Thank you. 8 You are making a mess. 8 You should be ashamed of forgetting everything. 9 I love having you around. 8 You are driving me crazy. 9 You have a great smile. 6. Check your understanding Give compliments. iS u p p o rt In te rv e n ti o n M an u al 41 Did William respond well in the first example? 8 No Will wants to distract his sister’s attention because he knows she is missing her husband and will be sad to be reminded that he died. Although Will has the best intentions, ignoring her questions is not the right way to respond especially because his sister persists in asking. Did William respond well in the second example? 9 ✓Yes It is important to try different responses to identify the one which will cause the less distress. Initially William tried to distract his sister with no success. Today, by showing his sister pictures of her husband, they had a good conversation about him. MODULE 2 7. Check your understanding How to show compassion (1). 8. Check your understanding How to show compassion (2). AN SW ER S - B EI NG A C AR ER • Le ss on 2 iS u p p o rt In te rv e n ti o n M an u al 42 Why is this lesson important? Making decisions can become more difficult for a person living with dementia over time. How will this lesson help me? By practicing how to support a person living with dementia to make their own decisions for as long as possible or to assist in making decisions in the person’s best interest. What will I learn? 1. Why is support in decision-making needed? 2. How to make decisions in someone’s best interest? 3. How to support someone with dementia to make everyday decisions? 4. How to support someone with dementia to make everyday decisions as the dementia progresses? 5. How to support someone with dementia in making complex decisions? 1. Why is support in decision-making needed? Supporting someone with dementia to make their own decisions is very important. Like everyone else, people living with dementia have the right to participate in all decisions that affect their lives and wellbeing. However, making decisions may become difficult due to the progression of dementia. Sometimes this results in relatives taking over decision- making, instead of supporting people with dementia to make their own decisions. In this lesson, you will learn how you can support the person you care for when they need to make a decision. Lesson 3. Supported decision-making MODULE 2 Le ss on 3 . S up po rte d de cis io n- m ak in g iS u p p o rt In te rv e n ti o n M an u al 43 z Memory loss Having memory loss will cause someone with dementia to sometimes forget the information that is needed to make a decision. z Problems with thinking or difficulties identifying and describing what someone with dementia thinks When a person living with dementia has problems thinking or describing what they are thinking, it might be more difficult for them to make a decision and share it with you. z Problems with making complex decisions Complex decisions, such as deciding whether or not to go outside alone, can be more challenging, therefore support is important. MODULE 2 Le ss on 3 . S up po rte d de cis io n- m ak in g Everybody needs to make decisions, whether they are big or small. Because the person you care for has dementia, your support is needed to help them clarify what they want. Decisions in line with the interests, needs and wishes of the person you care for will make them more independent. Decision-making can be difficult Why do you think decision-making can be difficult for a person living with dementia? Have a look at the reasons below to find out more. 2. How to make decisions in someone's best interest? iS u p p o rt In te rv e n ti o n M an u al 44 MODULE 2 1. Activity Le ss on 3 . S up po rte d de cis io n- m ak in g Do you support the person you care for to make decisions? You may want to write down the ways that you support their decision-making: Think about your own situation z Making decisions will become more difficult as the dementia progresses. z Your support for the person you care for to make their own decisions is needed. z Enabling them to make their own decisions might not be easy because of their dementia. iS u p p o rt In te rv e n ti o n M an u al 45 It is important to encourage the person you care for to do whatever they are still able to do. Supporting them in making decisions will help them to be more independent. Supporting them in making decisions might also improve their self-esteem. Manuel has Alzheimer's disease and is married to Maria. Manuel always used to lay out his clothes for the next day in the evening. Now he has dementia, he forgets to do so and sometimes wears the same clothes everyday. Let's look at an example 3. How to support someone with dementia to make everyday decisions? MODULE 2 Le ss on 3 . S up po rte d de cis io n- m ak in g z It is important to encourage the person that you care for they continue doing whatever they are still able to do. z Supporting the person you care for in making decisions will help them be more independent. z Support the person you care for in making decisions may add to their self-esteem. Keep in Mind1. Check your understanding Support for making everyday decisions. What do you think is the best way to make sure that Manuel wears clean clothes, without taking over his decisions at the same time? „ Before Maria and Manuel go to bed, Maria asks Manuel what he wants to wear the next day. She then asks Manuel to lay them out. „ Maria chooses clothes for Manuel and she asks him to lay them out. „ Maria chooses clothes for Manuel in the morning and gives them directly to Manuel to wear. iS u p p o rt In te rv e n ti o n M an u al 46 4. How to support someone with dementia to make everyday decisions as the dementia progresses? Let's look at an example After some time, Manuel feels stressed when choosing his clothes for the next day with Maria. He starts to worry about everything else he needs to do the next day and becomes anxious. This makes it difficult for Maria to support Manuel in making his decision. MODULE 2 Le ss on 3 . S up po rte d de cis io n- m ak in g z Supporting someone with dementia in making their own choices is possible, even as dementia progresses. z It may help to simplify decisions by limiting the number of choices or discuss the situation at a better time when the person is in a better mood or less worried. Remember What should Maria do? Please check all the responses that you feel are appropriate. „ Instead of supporting Manuel to choose his clothes the evening before, she asks him in the morning, at the beginning of the day. „ Maria lays out Manuel’s clothes in the evening. „ When Maria asks Manuel what he wants to wear she can give him only a few choices and, for example, ask him whether he wants to wear his blue or black trousers. 2. Check your understanding Support for making decisions as the dementia progresses. iS u p p o rt In te rv e n ti o n M an u al 47 5. How to support someone with dementia to make complex decisions? There comes a time in the course of dementia when someone may not be able to make complex decisions anymore, such as decisions concerning medical treatment. MODULE 2 Le ss on 3 . S up po rte d de cis io n- m ak in g What should the doctor and Chrissy do? Multiple answers are correct. „ Mary says what she wants, so she does not need support in making the decision whether or not to start with the medication. „ The doctor says that she should take the medication because it is good for her health. „ The doctor explains that taking the medication is good for her health, because it will slow down further damage in her brain because of her dementia. „ Her daughter says: "Mom, you know that you are forgetting things and that you have difficulties to find the right words when you want to say something. By taking the medication these problems may slow down a bit." 3. Check your understanding Support for making complex decisions (1). Let's look at an example Mary has vascular dementia and is taken care of by her daugther Chrissy. The doctor advises Mary to start using medication for her blood pressure. Mary says that she does not want to take pills because she does not understand why she needs them. iS u p p o rt In te rv e n ti o n M an u al 48 MODULE 2 Le ss on 3 . S up po rte d de cis io n- m ak in g What do you think are reasons that Jack can no longer make the decision himself? Please check all the responses that you feel are appropriate. „ Jack is unable to understand the information that is relevant to making the decision. „ Jack does not agree with the doctor. „ Jack is unable to communicate his decision (by talking, using body language or any other means). „ Jack is unable to use or weigh the information as part of the decision-making process. 4. Check your understanding Support for making complex decisions (2). Let's look at another example Jack who has dementia lives with his wife, Ella. Jack’s condition deteriorates. Ella decides to make an appointment with the doctor without Jack to discuss his medical condition and to make a decision regarding his medication. Ella discusses the issue with Jack’s sister as well, who asks her what she thinks Jack would have decided before he was diagnosed with dementia. Ella talks to the doctor and tries to imagine what Jack would have decided if given all the information. iS u p p o rt In te rv e n ti o n M an u al 49 The capacity to make a decision may be affected by the following considerations: z The type of decision being made. Someone with dementia might still be able to choose what kind of clothes to wear, but perhaps not whether to take medicines. z Change over time. Imagine that Jack had a severe infection that made him very confused. After this infection is cured, he might be able again to decide whether or not to take the medication. z Can be difficult to assess. Sometimes it is not clear, in which case there is no other alternative other than to help the person living with dementia make a decision that is in their best interest. MODULE 2 Le ss on 3 . S up po rte d de cis io n- m ak in g z Someone with dementia can be involved in making complex decisions, such as medical decisions, with the right support. z Support for making complex decisions should focus on providing correct information to help the person you care for understand what the consequences of the decision are. Remember iS u p p o rt In te rv e n ti o n M an u al 50 You can make decisions in the best interest of a person living with dementia by taking the following aspects into account. z Their past and present wishes and feelings (and, in particular, any relevant statement written when they did not have dementia). z Beliefs and values that may have influenced the person’s decision when he or she did not have dementia. z The views of anyone named by the person you care for as someone to be consulted to help with making decisions. z Be aware that the best interest of the person you care for is not always the same as your own best interest or that of other family members. In the end, it is the best interest of the person you care for that counts, since the decision concerns them. z Take into account that someone’s past wishes can be different from their present ones. Preparing for decisions To prepare for decisions that you might have to make for the person living with dementia it is important to: z Gather the information you need to make informed choices for the person as early in the course of the disease as possible. z Talk about decisions with your family, friends, doctor and any others close to you to help with decisions that are important to you both. z Prepare instructions that accurately reflect the wishes of the person living with dementia, in accordance with your country’s law (advance directives), and inform each other and your doctor about your preferences and decisions concerning medical treatment. MODULE 2 Le ss on 3 . S up po rte d de cis io n- m ak in g Remember iS u p p o rt In te rv e n ti o n M an u al 51 Think of the following choices when you prepare instructions that accurately reflect the wishes of the person you care for. MODULE 2 Le ss on 3 . S up po rte d de cis io n- m ak in g 2. Activity z Where does the person you care for prefer to live if it is no longer possible to stay at home? z What aspects of home/community/facility care are important to the person you care for? z Who does the person you care for want in charge of their finances when they are no longer capable of doing it? z How does the person you care for want to be treated at the end of their life? z Are there medical treatments that the person you care for wants to receive or refuse? z What does the person you care for want when eating is no longer possible? Would they want to get a feeding tube? z Does the person you care for have any particular fears or concerns about medical treatments? iS u p p o rt In te rv e n ti o n M an u al 52 You finished this lesson, well done! MODULE 2 Le ss on 3 . S up po rte d de cis io n- m ak in g iS u p p o rt In te rv e n ti o n M an u al 53 9 ✗Before Maria and Manuel go to bed, Maria asks Manuel what he wants to wear the next day. She then asks Manuel to lay them out. This is the right answer! This way Manuel is encouraged to do the things he is still able to do. 9 Maria chooses clothes for Manuel and she asks Manuel to lay them out. This answer is okay. It is good that Manuel is encouraged to lay out his clothes himself; however, it would have been better if Maria supported Manuel in making his own decision about what to wear. What do you think is the best way to make sure that Manuel wears clean clothes, without taking over his decisions at the same time? 8 Maria chooses clothes for Manuel in the morning and gives them directly to Manuel to wear. This is not a good option. Maria is taking control away rom Manuel. It would be better if she supported him in making his own decision and encouraged him to do the things which he is still able to do, such as laying out the clothes. MODULE 2 ANSWERS - BEING A CARER Lesson 3. Supported decision-making 1. Check your understanding Support for making everyday decisions. AN SW ER S - B EI NG A C AR ER • Le ss on 3 iS u p p o rt In te rv e n ti o n M an u al 54 What should Maria do? 9 Instead of supporting Manuel in choosing what he wants to wear in the evening for the next day, she asks him in the morning at the beginning of the day. Correct! Maria still supports Manuel in deciding what he wants to wear, but he will not start to worry the evening before. 8 ✗Maria lays out Manuel’s clothes in the evening. This is not a good option. Maria is deciding for Manuel, while he still might be able to make his own decisions. 8 When Maria asks Manuel what he wants to wear in the evening she can give him only a few choices and, for example, ask him whether he wants to wear his blue or black trousers. In some cases this might be a good option. Even though Maria decides which trousers Manuel should wear the next day, Manuel can still make the final decision himself. However, in this case it might not be the best thing to do, because it might not solve the problem that Manuel will worry about the next day. MODULE 2 ANSWERS - BEING A CARER Lesson 3. Supported decision-making 2. Check your understanding Support for making decisions as the dementia progresses. AN SW ER S - B EI NG A C AR ER • Le ss on 3 iS u p p o rt In te rv e n ti o n M an u al 55 8 ✗Mary says what she wants, so she does not need support in making the decision whether or not to start the medication. This is not correct. Since Mary has dementia, we are not sure whether or not she understands why she needs the medication and what the consequences of taking or not taking the medication might be. 8 ✗✗The doctor says that she should take the medication because it is good for her health. Incorrect. Although it is true that the medication will be good for her health, the doctor is telling Mary what to do, which is not so good. What should the doctor and Chrissy do? Multiple answers are correct. 9 The doctor explains that taking the medication is good for her health because it will slow down damage to her brain resulting from her dementia. This is right! Her doctor’s explanation allows Mary to understand the importance of taking the medication and will enable her to make an informed decision. 9 Her daughter says: “Mom, you know that you are forgetting things and that you have difficulties to find the right words when you want to say something. By taking the medication these problems may slow down a bit.” Correct! Using different words to explain the possible reasons for taking the medication might help Mary understand why taking the medication would be beneficial for her. MODULE 2 ANSWERS - BEING A CARER Lesson 3. Supported decision-making 3. Check your understanding Support for making complex decisions (1). AN SW ER S - B EI NG A C AR ER • Le ss on 3 iS u p p o rt In te rv e n ti o n M an u al 56 9 ✗Jack is unable to understand the information relevant for the decision. 8 ✗Jack does not agree with the doctor. 9 ✗Jack is unable to communicate his decision (by talking, using body language or any other means). 9 ✗Jack is unable to use or weigh the information as part of the decision-making process. What do you think are the reasons that Jack can no longer make the decision himself? Multiple answers are correct. MODULE 2 ANSWERS - BEING A CARER Lesson 3. Supported decision-making 4. Check your understanding Support for making complex decisions (2). AN SW ER S - B EI NG A C AR ER • Le ss on 3 iS u p p o rt In te rv e n ti o n M an u al 57 1. The importance of involving family and friends It might be difficult to involve others caring for the person living with dementia. You could think that others will not be able to provide care as well as you can, that they do not have time or might say ‘no’ when asked for help. As time progresses, the person you care for will need more and more help with daily activities. Therefore, it is important to involve others so that the tasks can be shared. It can also be helpful to have someone to talk to who understands your situation and feelings. Do not wait too long, since help early on will allow you to continue providing care to your family member or acquaintance in the long term. Why is this lesson important? Sharing caregiving responsibilities with other people will help you to continue providing care in the long term. How will this lesson help me? By practicing the skill ‘asking for help’. What will I learn? 1. The importance of involving family and friends. 2. Types of help and support that you might need. 3. Effectively asking for help from others. MODULE 2 Le ss on 4 . I nv ol vin g ot he rs Lesson 4. Involving others iS u p p o rt In te rv e n ti o n M an u al 58 2. Types of help and support that you might need First let’s look at an example to find out whether Li, David and Fatima are receiving help, and if so, what kind of help. z Li takes care of her mother who has dementia. She receives no help from others. She spends a lot of time taking care of her mother and feels overwhelmed. She would like to get some help from others. z David takes care of his wife who has dementia. David has involved his two sisters in the care. The sisters regularly take his wife out for shopping or help clean the house. z Fatima takes care of her husband who has dementia. Fatima receives help from her family, friends and neighbours. Some helpers assist with shopping or cleaning the home, others take her husband for a walk or just listen to the difficulties she has with his memory loss. z Friends: Mohammed is always there to listen when I need it. The types of help and support that Fatima receives are presented below. Practical help z Family: once a month my sister helps with cleaning the house. z Friends: once a week my friend Hiba comes over to help with shopping and cooking. z Family: several family members take my husband out for a walk on a regular basis. Help with pleasant activities Emotional support MODULE 2 Le ss on 4 . I nv ol vin g ot he rs z Acquaintances/neighbours: my neighbours help to find information on dementia. Providing information iS u p p o rt In te rv e n ti o n M an u al 59 What kind of help do you receive? Please write down the types of help that you receive in the spaces below. If the help you receive is not listed below, use the ‘Other help’ box at the end to fill in your answer. Do your family, friends, neighbours or others provide: Practical help? Emotional help? Help with pleasant activities? 1. Activity MODULE 2 Le ss on 4 . I nv ol vin g ot he rs iS u p p o rt In te rv e n ti o n M an u al 60 Information? Other help? 1. Activity Keep in mind that sharing care tasks is common. It may allow you to do something pleasant for yourself, run an errand without having to bring the person you care for, or just enjoy a well-deserved break. Tip MODULE 2 Le ss on 4 . I nv ol vin g ot he rs iS u p p o rt In te rv e n ti o n M an u al 61 Your own support network Take a look at your own network as stated in the previous pages, what do you see? Please select the response that applies to the help that you receive. „ I receive help in one category. It is very good that you are already involving others. You might want to receive help in other ways too. Think about people who might be able to help you. „ I receive help in more than one category. It is very good that you are already involving others in caring for your family member or acquaintance. If needed, you can ask for help from other people as well. Perhaps the examples helped you identify people you had not considered before. „ I do not receive help. Keep in mind that providing care can be difficult. Think about ways to involve others in sharing the tasks. Remember that you do not know whether people will want to help unless you ask. It can be difficult to find help if you don’t have family nearby or live in a rural or isolated area, or if your family refuses to help. Think about alternatives such as your faith community, contacting your doctor for advice, or your national / local dementia association. 2. Activity MODULE 2 Le ss on 4 . I nv ol vin g ot he rs iS u p p o rt In te rv e n ti o n M an u al 62 What would you like to get more help with? Before you ask someone for help, it is important to know what it is you would like to ask. It can help to make a wish list of your needs. Let’s first have a look at Li, David and Fatima. You can see their wish lists below. Li I would like one evening for myself to do a hobby or activity. I would like help with cleaning the house. David I would li ke to hav e someone I can talk to about my feelings. Fatima I would like to get into contact with other carers to share my experiences and receive tips. MODULE 2 Le ss on 4 . I nv ol vin g ot he rs iS u p p o rt In te rv e n ti o n M an u al 63 Make a list of wishes that seem achievable Wish 1 Wish 2 Wish 3 What is on your wish list? Make your own wish list for the help or support that you would like to receive. Wishes could be for example: z I would like help with bathing the person I care for. z I would like advice on how to deal with the person I care for. z I would like adjustments to be made in my home to accommodate the care needs of the person I care for. List those wishes that you think are achievable. If you know beforehand that you might not be able to achieve a certain wish, it might be better to list a different wish that is more attainable. For instance, Li would prefer to hire someone to clean the house every week. However, Li cannot afford this and realizes that her wish is not realistic. She could hire someone to clean the house once every two weeks or ask someone who she does not need to pay, such as a friend or relative. She can ask the person to clean the whole house, or to help with specific tasks that are difficult for her, such as cleaning the floors. 3. Activity MODULE 2 Le ss on 4 . I nv ol vin g ot he rs iS u p p o rt In te rv e n ti o n M an u al 64 Now it is time to think about who could help. Some people have no problem asking for help, other people are not used to it but do not mind giving it a try. There are also people who find it very difficult to ask for help. The next section will teach you skills to ask for help effectively. Keep in mind your support wish list. 3. Effectively asking for help from others If you would like to ask others for help it is important to do so in an effective way. This means that you should be able to talk to others about your thoughts, feelings and experiences. It also means that you stand up for yourself. Things that will help you to effectively ask for help: z Think about what you want or need and what your feelings are about the current situation. z Describe your problem in one or two sentences. z Describe your thoughts and feelings clearly, so that the other person can understand your point of view. Who can I turn to? z Be honest and direct. z Keep the feelings of the other person in mind. z Give detailed information about what kind of help you need. z Be flexible: maybe you won’t get exactly what you asked for, but you will get something that will be helpful. z Break it down into smaller parts – it’s usually easier for people to say yes to a little request than to a big one. z If you reach a point where you do not know what to do anymore: take a break – go back to the discussion at a future time. For example: agree to think about it and talk again tomorrow afternoon. z If appropriate, offer to do the task together first. z Don’t give up. It may take many attempts before things change. z Asking for help will not always lead to the result you want, but it is important that you feel able to ask for it. MODULE 2 Le ss on 4 . I nv ol vin g ot he rs iS u p p o rt In te rv e n ti o n M an u al 65 „ Li tells her sister that she wants to take care of their mother, but that she just needs a short break from caregiving during the week. She says: “I would like to discuss how you could help in a way that is possible for you.” Which of the following examples represents an effective way to ask for help? Please check the one response that you think is correct. She knows who to turn to for help and decides to ask her sister. Li would like to have an evening to herself once a week. She tries to ask for help in three different ways. Let’s have a look at Li again „ Li decides to attend a weekly one-hour class in the evening to have a break from providing care. However, she does not discuss with her sister the importance of having a break during the week. When she asks her sister to take care of their mother for an hour, her sister said: “Sorry, I have no time.” Li cancels her class. „ Li approaches her sister by saying, “I’m sick and tired of you not doing anything! You never have time to help me care for our mother!” 1. Check your understanding Asking for help effectively. MODULE 2 Le ss on 4 . I nv ol vin g ot he rs iS u p p o rt In te rv e n ti o n M an u al 66 Your own plan to involve others Make your own plan to involve others in caring for your family member or acquaintance with dementia. Now think of your wishes and who you can turn to for help. Imagine yourself in a situation in which you will ask for help. Please answer the following questions in the boxes below. Who would you like to ask for help? What would you like to say? What would you do if the person does NOT want to help? What would you do if the person does want to help? 4. Activity MODULE 2 Le ss on 4 . I nv ol vin g ot he rs iS u p p o rt In te rv e n ti o n M an u al 67 You finished this lesson, well done! MODULE 2 Le ss on 4 . I nv ol vin g ot he rs iS u p p o rt In te rv e n ti o n M an u al 68 MODULE 2 AN SW ER S - B EI NG A C AR ER • Le ss on 4 9 Example 1 Passive. This is not an effective way of asking for help. Her sister may not be aware that Li is feeling overwhelmed. Li is not being honest about her feelings and is trying to avoid a conflict with her sister. She does not stand up for herself. It is a passive way of asking for help. 8 Example 2. Aggressive. This is not an effective way of asking for help. Li becomes angry. However, her sister may not be aware that Li is feeling overwhelmed, because she did not clearly mention this. She does not approach her sister in a respectful way. It is an aggressive way of asking for help. Which of the examples is an effective way to ask for help?✗ 9 Example 3 Effective. This is an effective way of asking for help. Li stands up for herself, says what she is thinking and is honest about her need for a regular break. She also keeps the interests of her sister in mind. 1. Check your understanding Asking for help effectively. ANSWERS - BEING A CARER Lesson 4. Involving others M od ul e 3 . C ar in g fo r m e CARING FOR ME Lesson 1. Reducing stress in everyday life Lesson 2. Making time for pleasant activities Lesson 3. Thinking differently 3 MODULE iS u p p o rt In te rv e n ti o n M an u al 70 Why is this lesson important? It is important to take care of yourself while caring for another person. This lesson will help you to keep providing care. How will this lesson help me? This lesson helps to reduce stress and renew your energy with exercises that do not take much time. What will I learn? 1. The importance of relaxing. 2. Different ways to relax: z basic breathing; z mindful breathing; z neck movements; z number counting; z imagery; z total stretching; z muscle relaxation. 3. Relaxing at any time and any place. MODULE 3 Le ss on 1 . R ed uc in g st re ss in ev er yd ay lif e Lesson 1. Reducing stress in everyday life iS u p p o rt In te rv e n ti o n M an u al 71 1. The importance of relaxing Let’s look at an example Diana: no time, no energy Diana takes care of her husband Dan who has dementia. She feels increasingly tense. A friend advises her to try to relax and not ask too much of herself. Diana tells her friend that she does not have the time or energy to relax. Her friend explains that there are ways to relax that do not take much time, and that relaxing might give Diana renewed energy that could help her get tasks done more easily. Diana succeeds in relaxing Diana decides to follow her friend’s advice and tries the breathing exercise her friend showed her. When Diana sees her friend again she says: “Thank you for the good advice. Although I still have a lot to do, I feel less tense.” Diana decides to do the breathing exercise every time she is feeling tense. Relaxation: z makes you feel less tense; z might give you renewed energy; z may make it easier to get tasks done; and z does not have to take much time. MODULE 3 Le ss on 1 . R ed uc in g st re ss in ev er yd ay lif e Reminder iS u p p o rt In te rv e n ti o n M an u al 72 2. Different ways to relax There are different ways you can relax. Try and see which one(s) suit you best. Before you try an exercise ask yourself: “How tense am I feeling”? After the exercise, ask yourself again. This might help you understand whether this type of relaxation helps you feel less tense. In this lesson you will find seven relaxation exercises. The first three exercises will take only a few minutes (i.e. 5 minutes max.). The other exercises will take a little longer (i.e. 10-15 minutes max.). Use the scale below of 1-10 and tick what number describes how tense you are feeling now, 1 is very small amount of tension and 10 is very high amount of tension. VERY SMALL VERY HIGH 1 42 53 6 7 8 9 10 MODULE 3 Le ss on 1 . R ed uc in g st re ss in ev er yd ay lif e Focusing on your breathing is relaxing. By doing a breathing exercise you could reduce tension. This exercise will take: less than 5 minutes. Caution: if you experience difficulty breathing, this exercise might not be the best option for you. This is how you do it: z When sitting down, sit up straight in your chair with your back against the back of your chair. z When standing, stand up straight. z Put both of your feet flat on the surface. z Focus on your breathing. z Keep breathing like you are used to. z Try to feel how you breathe. Put your hand on your stomach to feel how you inhale and exhale. z Exhale from your mouth and pull in your stomach as much as possible. z Follow your breathing in this manner a couple of breaths and then stop the exercise. 1. Relaxation activity - Basic breathing iS u p p o rt In te rv e n ti o n M an u al 73 This exercise will help you feel calm and reduces stress. You will breathe with your stomach according to a rhythm. This exercise will take: 5 minutes. This is how you do it: z Sit straight in a chair and make sure your face and shoulders are relaxed. z Bring your hands to your stomach and breathe into it. z Breathe in for 4 counts and out for 8 counts, at a comfortable pace. z Your stomach should expand with each inhale and contract with each exhale. z Return to your normal breathing and spend one minute just observing yourself breathing and noticing how you feel. z Practice listening to your own thoughts without negative judgement. z If your mind wanders, refocus on breathing and meditation. With this exercise you will feel less tension in your neck. It will also increase the blood flow to your brain. This exercise will take: 5 minutes. This is how you do it: z Make sure to move slowly and with attention. z Bend your neck forward and backward. z Inhale while you lift your head up and back. Exhale while you drop your chin to your chest. z Rotate your chin from side to side. z Inhale when your chin is in the centre. Exhale when you look to the side. z Drop your ear towards your shoulder. z Inhale when you are in the centre. Exhale when you drop your ear to your shoulder. z Repeat 5 times. Relaxation exercise - Neck movements MODULE 3 2. Relaxation activity - Mindful breathing 3. Relaxation activity - Neck movements Le ss on 1 . R ed uc in g st re ss in ev er yd ay lif e iS u p p o rt In te rv e n ti o n M an u al 74 This exercise will take: 5 minutes. This is how you do it: z Sit or lie down comfortably in a quiet place. z Breath slowly. z With each breath, take at least 3 seconds to breathe in and 6 seconds to breath out. z Focus on your breathing and your lower stomach when you breathe until you feel calm and peaceful inside your heart and mind. z Say the word ‘relax’ whenever you breathe out. z Tell yourself that you will start counting down from 20 to 1. You can relax by focusing on your breathing and counting back from 20 to 1. z Tell yourself that you will double your level of relaxation for each and every count, and will be totally relaxed when you reach 1. z Start counting down from 20 to 1 slowly. Say the word ‘relax’ whenever you count (that is, take a deep breath, say ‘20’, breathe out slowly and say ‘relax’, take a deep breath, count ‘19’, breathe out slowly and say ‘relax’, and so on). z Now repeat this exercise but with your eyes closed. Relaxation exercise - Number counting MODULE 3 4. Relaxation activity - Number counting Le ss on 1 . R ed uc in g st re ss in ev er yd ay lif e iS u p p o rt In te rv e n ti o n M an u al 75 You can relax by imagining you are in a place or surrounded by people and things you like. This exercise will take: 5 minutes. Before completing this exercise, take a look at the helpful guidelines below. z Only imagine places, people and things you like. z Imagine what you can hear, feel, smell, and/or taste if you were in that place. z Try to think of very specific details of the place, thing or person. For example, how does the surface of the thing feel and how does it smell? Now try to relax while imagining that you are in a place or with the people or things that you like. This is how you do it: z Sit or lie down comfortably in a quiet place. z Breathe slowly. z With every breath, take at least three seconds to breathe in and at least six seconds to breathe out. z Focus on your breathing and your lower stomach when you breathe until you feel peaceful inside. z Imagine you are in a place or surrounded by things or people you like. z Now do this exercise again but close your eyes. MODULE 3 5. Relaxation activity - Imagery Le ss on 1 . R ed uc in g st re ss in ev er yd ay lif e iS u p p o rt In te rv e n ti o n M an u al 76 This exercise is particularly helpful when your muscles feel tense. This exercise will help you relax by tensing and relaxing your muscles. This exercise will take: 10-15 minutes Caution: if you have any injuries or any other physical limitations, this may not be the best exercise for you. Try one of the other exercises. Below are some general instructions for you to keep in mind. z When you are ready to begin, tighten the muscle group described. Make sure that you can feel the tension, but no pain. Keep the muscle tensed for approximately 5 seconds. z Relax the muscles and keep it relaxed for approximately 10 seconds. It may be helpful to say ‘relax’ as you relax the muscle. z When you have finished the muscle relaxation, remain seated for a few moments allowing yourself to become alert. This is how you do it: z Right hand and forearm: make a fist with your right hand. Hold for 5 seconds and then relax for 10 seconds. Don’t forget to breathe. It might be helpful to inhale while tensing your muscles and exhale while relaxing your muscles. Do the same for your left hand and forearm. z Right upper arm: bring your right forearm up to your shoulder to ‘make a muscle’. Hold for 5 seconds and then relax for 10 seconds. Do the same for your left upper arm. z Forehead: raise your eyebrows as high as they will go, as though you were surprised by something. Hold for 5 seconds and then relax for 10 seconds. z Eyes and cheeks: squeeze your eyes closed. Hold for 5 seconds and then relax for 10 seconds. z Mouth and jaw: open your mouth as wide as you can, as if you are yawning. Hold for 5 seconds and then relax for 10 seconds. MODULE 3 6. Relaxation activity - Muscle relaxation Le ss on 1 . R ed uc in g st re ss in ev er yd ay lif e Please continue the exercise on the following page. iS u p p o rt In te rv e n ti o n M an u al 77 z Neck: be careful as you tense these muscles. Face forward and then pull your head back slowly, as though you are looking up to the ceiling. Hold for 5 seconds and then relax for 10 seconds. z Shoulders: tense the muscles in your shoulders as you bring them up towards your ears. Hold for 5 seconds and then relax for 10 seconds. z Hips and buttocks: squeeze the muscles in your buttocks. Hold for 5 seconds and then relax for 10 seconds. z Right upper leg: tighten your right thigh. Hold for 5 seconds and then relax for 10 seconds. Repeat for your left upper leg. z Right lower leg: do this slowly and carefully to avoid cramps. Pull your toes towards you to stretch the calf muscle. Hold for 5 seconds and then relax for 10 seconds. Repeat for your left lower leg. z Right foot: curl your toes downwards. Hold for 5 seconds and then relax for 10 seconds. Repeat for your left foot. MODULE 3 6. Relaxation activity - Muscle relaxation (continued) Le ss on 1 . R ed uc in g st re ss in ev er yd ay lif e iS u p p o rt In te rv e n ti o n M an u al 78 Stretching your muscles can help to decrease tension. Stretching exercises are very convenient since you can do them anywhere and anytime. This exercise will take: 10 minutes. This is how you do it: z Stand up, or do this exercise in your chair. z Take a deep breath, all the way down to the bottom of your stomach, and slowly let it out. z As you exhale, feel the tension drain from your body. z Take one more breath and hold it for a moment… and let it out slowly. z With each breath you are becoming more and more relaxed. z Now, gently reach your arms out to the sides as though you were trying to touch the walls. z Relax your shoulders and stretch yourself a little. z Gently reach your arms out in front of you. z Feel the muscles in your back and shoulders loosen up. z Stretch out in front a little further. z And now reach up as high as you can. z Push up your arms towards the sky, as if you were trying to reach the sun. z Again, reach your arms out to the sides as though you were trying to touch the walls, as though you were trying to push them outwards. z Reach out in front of you. z Feel your muscles in your back and shoulders become looser and less tense. z Reach towards the sky one more time. z Reach as high as you can. z Try to touch the sun. z Lower your arms to your sides. MODULE 3 7. Relaxation activity - Total stretching Le ss on 1 . R ed uc in g st re ss in ev er yd ay lif e Please continue the exercise on the following page. iS u p p o rt In te rv e n ti o n M an u al 79 z Now, roll your shoulders back. z Feel the tension drain form your body. z Roll your shoulders back again. One more time roll your shoulders. z Now roll them forward. Forward again. One more time forward. z Now shrug your shoulders, lifting them up and then pushing them down. Shrug your shoulders again. Shrug them one more time. z Now another deep and refreshing breath and exhale all of the tension in your body. z Take one more breath…and exhale letting go of any remaining tension. MODULE 3 7. Relaxation activity - Muscle relaxation (continued) Le ss on 1 . R ed uc in g st re ss in ev er yd ay lif e iS u p p o rt In te rv e n ti o n M an u al 80 You can take some time to relax at any time of the day and in any place. Let’s look at an example Diana: relaxing while waiting in line Diana often feels tense when there is a long line in the store, as she is aware she still has many other things to do. She decides to do the breathing exercise while waiting in line. Afterwards, she feels less tense. You can also plan a specific time to relax, for example every day after lunch. You can choose what suits you best. If necessary, you can use a reminder to make sure that you do not forget to take some time to relax. 3. Relaxing at any time and any place z You can take some time to relax anywhere and at any time of the day. z Set a goal: try to do a relaxation exercise at least once a day. z You can plan a specific time to relax every day (if necessary, use a reminder). z You will benefit from having renewed energy and a better mood after doing the relaxation exercises. z Even a brief exercise can make a difference! z You will also be able to reduce feelings of tension and continue caring for your family member or acquaintance over the long term. MODULE 3 Keep in Mind Le ss on 1 . R ed uc in g st re ss in ev er yd ay lif e iS u p p o rt In te rv e n ti o n M an u al 81 Was this helpful for you? If not, there might be different reasons why relaxation was not helpful to you: z Perhaps you could not focus on relaxing. z Try again at another time! z Maybe you like an exercise, but you need some more practice to really benefit from it. Try to do this exercise regularly. z The exercise you chose may not have suited you. Try a different exercise! z The exercise you chose was too short. z Try this exercise again or do another one! If the exercises are still not helping you after these tips, try to do an activity you enjoy. Have a look at Lesson 2. Making time for pleasant activities in this module to find out which activities you may enjoy. MODULE 3 Le ss on 1 . R ed uc in g st re ss in ev er yd ay lif e You finished this lesson, well done! iS u p p o rt In te rv e n ti o n M an u al 82 1. The importance of pleasant activities Pleasant activities are important because caregiving can last a long time and doing pleasant activities can help you to relax and continue providing care. Pleasant activities can be small things such as going for a walk or talking to a friend. This may not always be easy, because providing care can be time- consuming and someone might have to take over the care for your family member or acquaintance while you are not there. Let’s see how Amy, Jose, and Umit experience caregiving and the importance of planning pleasant activities. Amy Amy takes care of her mother who is living with dementia. She dedicates most of her time to caregiving and rarely takes time for herself. She does not engage in any pleasant activities. Amy notices that recently she is more tired than usual and feels that she is not able to care for her mother as she did before. Why is this lesson important? It is important to take care of yourself while caring for another person. This lesson will help you to keep providing care. How will this lesson help me? This lesson will help you to take time for yourself and do pleasant activities to relax. What will I learn? 1. The importance of pleasant activities. 2. Barriers to doing pleasant activities. 3. Making pleasant activities achievable. 4. Doing pleasant activities together. MODULE 3 Le ss on 2 . M ak in g tim e f or p lea sa nt ac tiv iti es Lesson 2. Making time for pleasant activities iS u p p o rt In te rv e n ti o n M an u al 83 Jose Jose takes care of his brother who is living with dementia. Jose does not get a lot of sleep and rarely has time for afternoon naps. He recently started asking his sister to come by and help with caregiving so he can take a nap and read a magazine each afternoon. Umit Umit takes care of his wife who is living with dementia. Recently, he has hired a professional carer who stops by three times a week to help him care for her. When the professional carer is there, Umit reads the newspaper or goes for a walk. z If you are not able to make time for yourself, you can get very tired which may make you less able to continue providing care. z You can ask family and friends to help care for the person living with dementia so that you can take some time for yourself. z If it is affordable, you could hire a professional carer to help you care for your family member or friend so you can take some time for yourself. MODULE 3 Keep in Mind Le ss on 2 . M ak in g tim e f or p lea sa nt ac tiv iti es iS u p p o rt In te rv e n ti o n M an u al 84 Which pleasant activities would you like to do? Once you have some time for yourself, it can be hard to think of the things you would like to do. There are many possibilities and even in a short amount of time, you can still do an activity that you like. In this exercise you will make a list of pleasant activities that you would like to do. Please check at least two activities that you would like to do more often. If your favourite activity is not listed below, use the ‘other’ box to write your own activity. „ Do a crossword puzzle „ Watch TV „ Visit friends or family „ Cook „ Listen to music „ Do crafts „ Read „ Take a nap „ Go shopping „ Take a walk „ Exercise „ Other: 1. Activity MODULE 3 Le ss on 2 . M ak in g tim e f or p lea sa nt ac tiv iti es iS u p p o rt In te rv e n ti o n M an u al 85 2. Barriers to doing pleasant activities Let’s go back to Amy’s example Amy dedicates most of her time to caring for her mother who has dementia. She does not receive any help and is tired all the time. She is struggling to care for her mother and has stopped doing the things she likes because she feels that she does not have enough time. Eventually, Amy is so tired that she decides to ask her friend for help. She is now able to make some time for herself and engage in pleasant activities. Amy feels more energized afterwards. She also feels that she is better able to handle the care for her mother as a result. Other reasons you may feel unable to do pleasant activities Not having time was the reason that Amy did not feel as though she could do any pleasant activities. However, there are several other reasons. MODULE 3 Le ss on 2 . M ak in g tim e f or p lea sa nt ac tiv iti es iS u p p o rt In te rv e n ti o n M an u al 86 Do you recognize any of the following? Please select any that may apply to you. „ No time. You might feel that you are too busy and not able to find any spare time. It is really important that you try to make some time during the day or in the evening to do something you enjoy. If you have little time, there are some pleasant activities that do not take up a lot of time and which you can fit in around your day. „ No energy. You might have less energy because caregiving can be tiring. Although it is hard to imagine, it is likely that you will feel more energized after doing something you like. „ No money. You might think that you have to spend lots of money to do something pleasant. Pleasant activities do not have to be costly. You can keep the activities as simple as you want them to be. For example, things like meeting a friend for a cup of tea or going for a walk by yourself do not cost money. „ Not in the mood. You might not feel like doing pleasant activities. Although it is hard to imagine, it is likely that your mood will be better after doing something you like. On the other hand, not doing pleasant activities will likely worsen your mood. „ Physical limitations. You might think that if you have physical limitations, you are not able to do a pleasant activity. If you have physical limitations, think of activities that you can do despite your limitations. There are many possibilities, such as reading, playing a game or talking to a friend. „ Guilt. You might feel guilty because you will feel that you are running away from the person you care for. You need time to do things you like, relax and recharge so that you can provide adequate care for them. Being a good carer means taking care of yourself as well. 2. ActivityMODULE3 Le ss on 2 . M ak in g tim e f or p lea sa nt ac tiv iti es iS u p p o rt In te rv e n ti o n M an u al 87 Suggestions for doing pleasant activities z Consider asking someone to help you with some of your day-to-day tasks. z Consider the impact of not doing certain tasks at that moment. For example, what is the impact of not cleaning the house every day? You may realize that you can be more flexible and have more time as a result. z Try to do one activity at a time and finish the things you have started as much as possible. If you leave something unfinished, it may make you feel dissatisfied. You may not be able to focus entirely on your next activity. You could feel more energized if you complete an activity before taking on another. z Think about ways to better manage your time. Consider using an agenda or calendar. z Talk to someone about how you might be able to better manage your time. Seeking another opinion or suggestions may be helpful. MODULE 3 Le ss on 2 . M ak in g tim e f or p lea sa nt ac tiv iti es Consider asking for help. iS u p p o rt In te rv e n ti o n M an u al 88 Now rate how achievable it would be for you to do the pleasant activities that you chose earlier in this lesson (see the exercise on page 16). 3. Making pleasant activities achievable Read every activity and consider whether the activity is: 1. unachievable; 2. unlikely to be achievable; 3. somewhat achievable; 4. achievable; 5. very achievable. Please check at least two activities that you would like to do more often. If your favourite activity is not listed below, use the ‘other’ box to write your own activity. „ Do a crossword puzzle „ Watch TV „ Visit friends or family „ Cook „ Listen to music „ Do crafts „ Read „ Take a nap „ Go shopping „ Take a walk „ Exercise „ Other: MODULE 3 3. Activity Le ss on 2 . M ak in g tim e f or p lea sa nt ac tiv iti es Unlikely to be achievable Somewhat achievable Achievable Very achievableUnachievable iS u p p o rt In te rv e n ti o n M an u al 89 4. Doing pleasant activities together It can be very rewarding to do pleasant activities with the person that you care for. However, it might be difficult at first to think of pleasant activities that are suitable for both of you. In this exercise we will make a list of the pleasant activities that you can do with the person you care for. First, take a look at Jose’s experience from the previous exercise. Jose Jose takes care of his brother who is living with dementia. In addition to taking a nap while his sister takes care of his brother, Jose takes his brother out for walks around the neighbourhood. His brother enjoys the walks and Jose is also able to get some exercise and fresh air. Which of your activities can you do today? It is a good idea to start with your pleasant activities as soon as possible and incorporate them into your routine. Which of your activities can you do today? If it is inconvenient to start an activity today, think about the pleasant activities you could do tomorrow. Start with small goals and add more pleasant activities after you feel successful with your first try. Rethink the activities that you would like to do to help make them more achievable. z Pleasant activities should be achievable. z There are different reasons why you can feel that pleasant activities are not achievable. z There are ways to undertake pleasant activities despite these reasons. Remember MODULE 3 Le ss on 2 . M ak in g tim e f or p lea sa nt ac tiv iti es iS u p p o rt In te rv e n ti o n M an u al 90 Please select at least one activity that you would like to do together more often. If an activity is not listed below, use the ‘other’ box at the bottom of the list to add the activity that you would like to do. Keep in mind that despite the challenges, pleasant activities are good for you and are necessary to ensure that you are able to keep providing care to your family member or acquaintance. What would you like to do more often? Take a look at the list on the next page for examples that you can do with the person that you care for. „ Listen to music „ Play a musical instrument „ Take a relaxing walk „ Listen to or read stories, newspaper articles, poems, etc. „ Go out to eat together „ Cook and prepare snacks „ Watch birds or animals „ Do handiwork or crafts „ Look at photos „ Watch the clouds or explore nature „ Recall and discuss happy memories „ Have friends over to visit „ Other: Activity MODULE 3 Le ss on 2 . M ak in g tim e f or p lea sa nt ac tiv iti es iS u p p o rt In te rv e n ti o n M an u al 91 MODULE 3 Le ss on 2 . M ak in g tim e f or p lea sa nt ac tiv iti es You finished this lesson, well done! iS u p p o rt In te rv e n ti o n M an u al 92 Why is this lesson important? Your thoughts determine how you feel. Unhelpful thoughts can make us feel bad. How will this lesson help me? This lesson will help you think differently and change your unhelpful thoughts into helpful ones. What will I learn? 1. Thoughts determine how we feel. You cannot change what happens, but you can change your response. 2. Learn to think differently by changing unhelpful thoughts into helpful ones. 3. Thinking differently makes you feel better. 1. Thoughts determine how we feel There are different ways to deal with stressful events. One way is to think differently. Let’s look at an example. MODULE 3 Le ss on 3 . T hi nk in g di ffe re nt ly Lesson 3. Thinking differently It is not an event that makes you feel angry, sad, happy or guilty, it is how you think about it. An event can be anything. Here are a few examples: z The person you care for becomes angry when you ask him/her something. z Your family member who promised to help you does not turn up or cancels on you. z The person you care for cannot find something. z Your family member is blaming you for not providing the right care. Many people think that their feelings are a direct consequence of an event. However, it is the way that you think about the event that determines how you feel. iS u p p o rt In te rv e n ti o n M an u al 93 What do you think Jo should do? Please check all the responses that you feel are appropriate. „ Tell Max that she cannot help him search now and leave. „ Search for the keys until she finds them. „ Tell Max that he should be more careful not to lose his keys in the future. „ Think to herself, “Max has dementia and is sometimes worried when he loses things. I can take some time to help and then go.” Then call her friend and explain that she will come later. MODULE 3 1. Check your understanding Feelings and thoughts. z There are many different ways of dealing with events. z Negative thoughts can make us feel bad. z By thinking differently, you might feel better and be able to better deal with events. Keep in mind Le ss on 3 . T hi nk in g di ffe re nt ly Lost keys Jo is married to Max who is living with dementia. She is about to leave the house to visit a friend. Max says, “I can’t find my keys! You cannot leave me without keys!” Jo thinks to herself: “I cannot leave him alone anymore.” She starts to feel miserable. iS u p p o rt In te rv e n ti o n M an u al 94 Jo thinks to herself when Max cannot find his keys: “I cannot leave Max alone anymore.” This makes her feel miserable. This means that Jo is thinking in an unhelpful way. Unhelpful thoughts can make it harder to respond in useful ways to situations like this. Instead, Jo could think: “Max has dementia and is sometimes worried when he loses things. I can take some time to help and then go.” This different way of thinking will probably make Jo feel better and help her stay calm and compassionate. Helpful thoughts can make it easier to respond in useful ways to situations like these. Jo’s unhelpful and helpful thoughts z It is not the event itself that makes you feel angry, sad, happy or miserable. z Helpful or unhelpful thoughts can determine how you respond to a situation. z By changing your thoughts, you could help change the way you feel. MODULE 3 Keep in mind Le ss on 3 . T hi nk in g di ffe re nt ly iS u p p o rt In te rv e n ti o n M an u al 95 Can you indicate which of Aryan’s thoughts may help make her feel better? Aryan might think… „ Making time for myself helps me to provide better care. „ I am a bad carer if my family member is not always happy. „ Maybe the person living with dementia will become better. „ No one understands how hard it is to care. „ No one can provide the care the way I do. „ Asking others for help can help me to share the duties of care. „ Dementia is a disease, it is not my or anyone else’s fault. Unhelpful thoughts make you feel bad Aryan has been caring for her family member who is living with dementia for several years now. She has many thoughts. Some make her feel worse, some make her feel better. z Unhelpful thoughts can make you feel bad. z Helpful thoughts are important to feel better and will assist you in dealing with situations in a more useful way. z To feel better, it is important to identify unhelpful thoughts. MODULE 3 Keep in mind2. Check your understanding Thoughts that can make you feel better. Le ss on 3 . T hi nk in g di ffe re nt ly iS u p p o rt In te rv e n ti o n M an u al 96 How do you think Xavier is feeling? Please check all the responses that you feel are appropriate. „ Angry „ Guilty „ Happy „ Lonely „ Sad „ Supported „ Upset 2. Learn to think differently by changing unhelpful thoughts into helpful ones What if Xavier instead thinks to himself, “if Gabriel thinks I need help, he must care about me and my father and wants to make sure we are doing well”? MODULE 3 3. Check your understanding How thoughts influence our feelings. Le ss on 3 . T hi nk in g di ffe re nt ly Xavier meets his friend Gabriel Xavier takes care of his father, who is living with dementia. While he is shopping, he meets his friend Gabriel, who asks, “How are you? Do you need any help caring for your father?” Xavier thinks to himself, “if Gabriel thinks I need help, he must think that I am a bad carer”. How does Xavier feel now? Please check all the responses that you feel are appropriate. „ Angry „ Guilty „ Happy „ Lonely „ Sad „ Supported „ Upset 4. Check your understanding Match feelings to a helpful thought. Sometimes you cannot change the things that happen (events), but you can change your response (thoughts). Keep in mind iS u p p o rt In te rv e n ti o n M an u al 97 „ I have to do everything alone. „ The person I care for does not care about me anymore. „ When the person I care for is not happy, it means that I am a bad carer. „ Maybe the person I care for will get better. „ I must always be available for the person I care for. „ I should not consider my own needs if I want to be a good carer. „ No one understands how hard it is to care. „ No one can provide care the way I do. „ He/she being diagnosed with dementia has complicated my life. „ I have no time for others as a carer. „ I feel sorry for the person I care for. „ Other people are better off than the person I care for and I. „ Other: MODULE 3 Le ss on 3 . T hi nk in g di ffe re nt ly Which unhelpful thoughts do you have? Please check the unhelpful thoughts that you have or provide additional examples. In an earlier example you indicated which thoughts are helpful and which may be unhelpful. Below you will find a list of unhelpful thoughts. 1. Activity iS u p p o rt In te rv e n ti o n M an u al 98 Changing your unhelpful thoughts to helpful ones can make you feel better.In an earlier example you indicated which thoughts are helpful and which may be unhelpful. Below you will find a list of helpful thoughts. Please check the helpful thoughts that you have or provide additional examples. „ It is okay to take time to relax as it will help me to provide a good standard of care. „ Sharing my feelings with others helps to take the pressure off. „ Asking for help from others can help me to share the burden of care. „ Making time for myself helps me to provide better care. „ Dementia is a disease; it is not my or anyone else’s fault. „ I do not have to give others their way all the time. „ Other: Which helpful thoughts do you have? MODULE 3 Keep in mind Le ss on 3 . T hi nk in g di ffe re nt ly 2. Activity iS u p p o rt In te rv e n ti o n M an u al 99 3. Thinking differently makes you feel better You cannot change the things that happen, but you can change your response. In other words, you cannot change events but you can change your thoughts. Example 1: Wei Wei takes care of his wife Xu, who is living with dementia. He writes the following: Name: Wei Yesterday my wife Xu and I visited some friends. We had tea together. Xu dropped her cup on the floor. When they started to clean the floor, Xu did not help, but she stood in the way. She did not apologise for her behaviour, but laughed. Our friends are upset with my wife and won’t invite us to their house again. My wife has dementia and is unable to think and act in the same way that she used to. Our friends won’t blame my wife as I have explained to them that she has dementia and that her thinking has declined. Instead of feeling worried and ashamed, I would have felt happy about the day we spent with our friends. What was the event that made you feel upset or miserable? What were your unhelpful thoughts? What would be more helpful to think? How could the helpful thoughts make you feel? MODULE 3 Le ss on 3 . T hi nk in g di ffe re nt ly iS u p p o rt In te rv e n ti o n M an u al 100 Example 2: Helen Helen takes care of her brother Matty, who is living with dementia. She writes the following: MODULE 3 Name: Helen A week ago, our sister came to visit us. At the end of the day, I said to Matty, “it was a great day, don’t you think?” Then he said that he was not sure, because he could not remember exactly what we had been doing. He said that he was tired and wanted to sleep. Nothing we do is worthwhile because Matty forgets everything. Everything is ruined because of his dementia. Even though he cannot remember what we did, I know that he had a great day too, and that is what counts. He smiled a lot today and kept saying how nice it was that our sister came. Instead of feeling sad and miserable, I would have felt happy about the day we spent with our sister. What was the event that made you feel upset or miserable? What were your unhelpful thoughts? What would be more helpful to think? How could the helpful thoughts make you feel? Le ss on 3 . T hi nk in g di ffe re nt ly iS u p p o rt In te rv e n ti o n M an u al 101 Now it’s your turn. In the next exercise you will work to change your unhelpful thoughts into helpful ones. Try to think of a recent event that made you feel upset and answer the questions below. You can refer back to the examples on the previous page for some help. MODULE 3 Le ss on 3 . T hi nk in g di ffe re nt ly Name: What was the event that made you feel upset or miserable? What were your unhelpful thoughts? What would be more helpful to think? How could the helpful thoughts make you feel? iS u p p o rt In te rv e n ti o n M an u al 102 Name: What was the event that made you feel upset or miserable? What were your unhelpful thoughts? What would be more helpful to think? How could the helpful thoughts make you feel? Practice makes perfect. Do you want to try one more time? Please answer the questions below for a different event. MODULE 3 Le ss on 3 . T hi nk in g di ffe re nt ly iS u p p o rt In te rv e n ti o n M an u al 103 You finished this lesson, well done! MODULE 3 There are events in which feeling upset, miserable, sad or angry is inevitable. Examples include: if the person you care for needs to go to the hospital or if you lose a dear friend or family member. To change your thoughts in such events would not do justice to your feelings. Keep in mind Le ss on 3 . T hi nk in g di ffe re nt ly z You cannot change what happens, but you can change your response. z You can learn to think differently by changing your unhelpful thoughts into helpful ones. z Thinking differently makes you feel better. Let’s review what you have learned in this lesson iS u p p o rt In te rv e n ti o n M an u al 104 8 Tell Max she cannot help him search now and leave. This is bad advice. Max has dementia and is feeling worried. He could be very upset if Jo leaves the house right now. 8 Search for the keys until she finds them. This could be helpful. Max might feel safer if he has the keys. However, this may mean Jo misses meeting her friend and is left feeling miserable. 8 Tell Max that he should be more careful not to lose his keys in the future. This is not such good advice. Max has dementia, he cannot help misplacing things. What do you think Jo should do? 9 ✓Think to herself, “Max has dementia and is sometimes worried when he loses things. I can take some time to help and then go.” Then call her friend and explain that she will come later. This is good advice. It is not the fact that Max has lost the keys that is making Jo miserable, but her concern that she always needs to help Max and cannot leave him alone anymore. After Jo has called her friend, she can help Max search for the keys, which will make him feel safer. Then she can go to see her friend. 1. Check your understanding Feelings and thoughts. ANSWERS - BEING A CARER Lesson 3. Thinking differently AN SW ER S - C AR IN G FO R M E • L es so n 3 iS u p p o rt In te rv e n ti o n M an u al 105 9 Making time for myself helps me to provide better care. This is a helpful thought. No one should feel guilty when taking time for themselves. It might help the carer to continue providing care in the long term. 8 I am a bad carer if my family member is not always happy. This thought will make Aryan feel unhappy and sad. The mood of the person living with dementia does not depend solely on the carer. For example, mood can also be related to dementia, depression, functional ability or personality. 8 Maybe the person living with dementia will get better. This thought may make Aryan feel disappointed as people with dementia continue to decline. There are many diseases that cause dementia. Unfortunately, there is no cure for any of these diseases yet. ✓ Which of Aryan’s thoughts may help make her feel better? 8 No one understands how hard it is to care. This thought may make Aryan feel upset, isolated and lonely. There might be people who do not understand how hard it is to care. However, talking to other people may help them better understand what dementia is and help you to take some pressure off. 8 No one can provide the care the way I do. This thought could make Aryan feel lonely, isolated and under a lot of pressure. Although others may provide care in a different way, that does not mean that it is always of a lower standard. It is important to involve others in caring for a person living with dementia, to avoid getting overwhelmed. 9 ✓Asking others for help can help me to share care duties. This is a helpful thought that may make Aryan feel more in control. Involving other people in caregiving has lots of potential benefits. For instance, the carer will be able to take breaks more regularly and provide care for a longer time. AN SW ER S - C AR IN G FO R M E • L es so n 3 2. Check your understanding Thoughts that can make you feel better. iS u p p o rt In te rv e n ti o n M an u al 106 Xavier thought, “if Gabriel thinks that I need help, he must think I am a bad carer.” How do you think Xavier is feeling? This is an unhelpful thought that may make Xavier feel: 9 upset 9 lonely 9 sad 9 angry 9 guilty Xavier thought, “if Gabriel thinks I need help, he must care about my father and want to make sure that we are doing well”. How does Xavier feel now? This is a helpful thought that may make Xavier feel happy or supported. AN SW ER S - C AR IN G FO R M E • L es so n 3 3. Check your understanding How thoughts influence our feelings. 4. Check your understanding Matching feelings to a helpful thought. M od ul e 4 . P ro vid in g ev er yd ay ca re PROVIDING EVERYDAY CARE Lesson 1. Eating and drinking - more pleasant mealtimes Lesson 2. Eating and drinking - preventing health problems Lesson 3. Toileting and continence care Lesson 4. Personal care Lesson 5. An enjoyable day 4 MODULE iS u p p o rt In te rv e n ti o n M an u al 108 1. Making mealtimes more pleasant Engaging people with dementia in simple tasks around mealtime helps to make the most of people’s skills, promote feelings of self-worth, and enjoy the mealtime. Why is this lesson important? Dementia can affect eating and drinking in various ways depending on the stage of dementia and other health conditions. How will this lesson help me? By learning how to help create more pleasant mealtimes and prevent dehydration. What will I learn? 1. Making mealtimes more pleasant. 2. Promoting a good mealtime atmosphere. 3. Health conditions that affect eating and drinking. 4. Preventing dehydration. MODULE 4 Le ss on 1 . E at in g an d dr in ki ng - m or e p lea sa nt m ea lti m es Lesson 1. Eating and drinking - more pleasant mealtimes iS u p p o rt In te rv e n ti o n M an u al 109 Let’s look at an example MODULE 4 Le ss on 1 . E at in g an d dr in ki ng - m or e p lea sa nt m ea lti m es How would you advise Siya’s family to deal with this situation? Please select the answer that you think is correct from the list. „ Bring Siya’s dinner to her room. „ Demand that Siya joins them for dinner. „ Let Siya help with meal preparation and cleaning activities. 1. Check your understanding Making mealtimes more pleasant. Siya was a housewife and cooked every day for her family for many years. Recently, she lost her husband and now lives with one of her sons. Adi, her daughter-in-law, provides all the cooking in the new household. Siya has been very sad in her new home and says she’s not hungry when she is offered food. She does not join the family for dinner. iS u p p o rt In te rv e n ti o n M an u al 110 Mealtime activities Please select all activities from the list below that you think the person you care for can still engage in and would enjoy. Now, try to think about involving the person that you care for around mealtimes. Mealtime activities Example Washing or drying dishes Shopping together Meal preparation Preparation of the table Cleaning the table „ Let the person living with dementia choose what food and drinks they like to buy for breakfast, lunch and dinner. „ Let the person living with dementia help chopping, stirring, or cooking. „ Let the person living with dementia lay the table for breakfast, lunch and dinner. „ Let the person living with dementia remove everything from the dining table and wipe the table. „ Let the person living with dementia put dishes in the sink or wash and dry the dishes. 1. Activity MODULE 4 Le ss on 1 . E at in g an d dr in ki ng - m or e p lea sa nt m ea lti m es If you think that the person you care for can still engage in and would enjoy any of the listed activities, perhaps you could ask or assist them in trying these activities the next time you have a meal. iS u p p o rt In te rv e n ti o n M an u al 111 2. Promoting a good mealtime atmosphere Mealtime is a good opportunity for carers to show their care and support for the person living with dementia. An enjoyable mealtime atmosphere may help encourage them to eat and drink. Let’s look at an example again. Spilling food Shang has Alzheimer’s disease and lives with his oldest son since his wife passed away a year ago. The family now has four generations who eat together at the table. Shang sees the mealtime as the best time of the day. Recently, Shang’s hands have started to tremble and he often spills or drops food on the table and the floor. How would you advise Shang’s son to deal with this situation? Please check the responses that you feel are appropriate. „ Buy adaptive eating and drinking aids from the shop for Shang. „ Set up a separate table for his father to eat in his own bedroom, because spilling and dropping food may make the family irritated. „ Organize a family meeting to ask all family members to think of more positive and constructive ways to respond to the situation at mealtimes. 2. Check your understanding Promoting a good mealtime atmosphere. MODULE 4 Le ss on 1 . E at in g an d dr in ki ng - m or e p lea sa nt m ea lti m es iS u p p o rt In te rv e n ti o n M an u al 112 Health condition Changes that you may have observed Recommended actions you may try Poor appetite Toothache Poorly fitting artificial dentures „ Does not want to eat the meal „ Eats only small amounts of food „ Takes a long time to eat a small amount of food „ Refuses to eat and drink „ Is restless „ Has a facial expression indicating pain „ Refuses to eat and drink „ Is restless „ Has a facial expression indicating pain „ Refuses to wear dentures „ Throws dentures on the floor z Make food appealing: use different textures, flavours, smells, tastes, sounds and colours that the person enjoys z Eat with the family, rather than alone z Play soft music that they like during mealtime z Increase physical activities that they can do during the day z Ask whether the person is in pain z Ask them to point out the area of pain z Check whether there are loose teeth, mouth ulcers, etc. z Seek help from a doctor or dentist z See above for toothache z Check that the dentures are in good condition and fit properly Health conditions Common health conditions can affect eating and drinking. The activity below teaches you how to improve these conditions, if they are present. 2. Activity Le ss on 1 . E at in g an d dr in ki ng - m or e p lea sa nt m ea lti m es MODULE 4 iS u p p o rt In te rv e n ti o n M an u al 113 Diarrhoea Side effects from medications Does not have bowel movement for more than 7 days „ Liquid faeces „ Increased number of bowel movements „ Incontinency and difficulty controlling bowel movements „ Nausea, vomiting, liquid faeces or constipation „ Does not want to have a meal „ Eats only small amounts of food „ Hard and dry faeces „ Difficulty passing faeces/straining „ Having a feeling of incomplete bowel movements „ Becomes anxious or agitated „ Hard stomach „ Nausea and vomiting z Seek help from a doctor z Seek help from a doctor z Seek help from a doctor z Upon resolution of the problem: { Increase fibre in diet { Increase drinking of fluids { Increase physical activity Body pain „ Refuses to eat and drink „ Is restless „ Unusual body postures „ Has a facial expression of pain z Ask whether the person is in pain z Ask them to point out the area of pain z Seek help from a doctor Health condition Changes that you may have observed Recommended actions you may try 2. Activity Le ss on 1 . E at in g an d dr in ki ng - m or e p lea sa nt m ea lti m es MODULE 4 iS u p p o rt In te rv e n ti o n M an u al 114 Weight loss Weight gain Depression „ Forgets to eat „ Eats smaller amounts of food „ Eats regular amounts of food but still loses weight „ Eats all the food that is served „ Eats more snacks than before because they forget that they already ate „ Is obsessed with food „ Refuses to eat or says they are not hungry „ Eats small amounts of food „ Has no interest in food z Increase the amount of food z Provide foods that they will like z Increase flavourful foods as the person’s taste might be impaired z Seek advice from a doctor z Model eating and drinking z (i.e. eat and drink with the person) z Serve smaller portions z Remove the plate when the person indicates that they are full z Provide low calorie snacks z Seek help from a doctor Memory loss; forgets to eat or drink „ Asks when the next meal is even if it already happened „ The person says that they are hungry even if they already ate z Remind the person to eat and drink regularly z Model eating and drinking (i.e. eat and drink with the person) z Provide snacks between meal times Health condition Changes that you may have observed Recommended actions you may try 2. Activity Le ss on 1 . E at in g an d dr in ki ng - m or e p lea sa nt m ea lti m es MODULE 4 iS u p p o rt In te rv e n ti o n M an u al 115 4. Preventing dehydration People living with dementia have a higher risk of being dehydrated. There can be several reasons for this: z inability to explain their needs; z decreased thirst sensation; z not offered enough to drink; and, z swallowing problems in the late stage of dementia. The person you care for needs to be encouraged to drink 8-10 glasses (1500-2000 millilitres) of fluid (water, iced lollies, soup and juice, not including tea or coffee every day. Severe dehydration Ben has Alzheimer’s disease, but he is able to eat and drink without assistance from his wife, Mary. Ben likes to walk a lot. One hot afternoon, Mary also notices that Ben seems very tired, walks very slowly and then collapses on the floor. Ben is sent to the local hospital’s Emergency Department and is diagnosed with dehydration. After treatment in the hospital, Ben has recovered and is able to go home again. How would you advise Mary to deal with the situation after Ben is discharged home? Please select all the responses that you feel are appropriate. „ Mary needs to let Ben make the decision about when to drink. „ Mary needs to ensure that Ben drinks 8-10 glasses of water during the day. „ Mary records the time and the amount of fluid Ben actually consumes. 3. Check your understanding Severe dehydration. MODULE 4 Le ss on 1 . E at in g an d dr in ki ng - m or e p lea sa nt m ea lti m es iS u p p o rt In te rv e n ti o n M an u al 116 Timetable for eating and drinking The timetable below is for you to remind the person living with dementia to eat and drink. Give them the opportunity to choose what to drink. Time of day Type of fluid (e.g. water) Amount of fluid (e.g. 3 glasses) Morning - Noon Noon - Dinnertime Dinnertime - Bedtime 3. Activity WARNING! If the person you care for is not allowed fluids due to a heart condition, you need to follow the doctor’s order regarding how much to drink. MODULE 4 Le ss on 1 . E at in g an d dr in ki ng - m or e p lea sa nt m ea lti m es iS u p p o rt In te rv e n ti o n M an u al 117 Let’s review what you have learned z The person you care for needs to be encouraged and supported to eat and drink. z You can engage the person you care for in a variety of mealtime activities to create a pleasant mealtime for them, which helps to improve self-worth and a feeling of achievement. z Eating and drinking can be facilitated by modifying food, utensils and the environment. z You can maintain good eating and drinking for the person you care for by improving their health condition. Seeking assistance from health professionals might be necessary. z To help prevent dehydration, it is important to prompt the person living with dementia to drink. z Record and monitor the amount of fluid they consume. MODULE 4 Le ss on 1 . E at in g an d dr in ki ng - m or e p lea sa nt m ea lti m es You finished this lesson, well done! iS u p p o rt In te rv e n ti o n M an u al 118 iS u p p o rt In te rv e n ti o n M an u al How could Siya’s family deal with the situation? 8 Bring Siya dinner in her room. This is not helpful because it might further isolate Siya from her family. Siya may not feel welcome in the new home. She has lost her husband, her own home and now also her previous roles as cook and housekeeper. 8 Demand that Siya joins them for dinner. This is not such a good response because it may make Siya angry or cause her to further withdraw. 9 Siya’s family should let her help with the meal preparation and cleaning activities. This is a good response because her family knows Siya still enjoys cooking and should therefore support her to continue engaging in the activities that she likes and is still able to do. AN SW ER S - C AR IN G FO R M E • L es so n 1 1. Check your understanding Making mealtimes more pleasant. ANSWERS - PROVIDING EVERYDAY CARE Lesson 1. Eating and drinking - more pleasant mealtimes iS u p p o rt In te rv e n ti o n M an u al 119 iS u p p o rt In te rv e n ti o n M an u al 9 Buy adaptive eating and drinking aids from the shop for Shang. This is a good response because Shang’s son recognises that his father is no longer able to manage eating and drinking using the usual utensils. By providing other utensils he is trying to solve this problem. 8 Set up a separate table for his father to eat in his own bedroom, because spilling and dropping food may make the family irritated. This is not helpful because separation will make Shang feel sad or angry, which might prevent him from eating and drinking properly. 9 Organise a family meeting to ask all family members to think of more positive and constructive ways to respond to the situation at mealtimes. This is a good response because Shang’s son is trying to provide a positive mealtime atmosphere for everyone. 2. Check your understanding Promoting a good mealtime atmosphere. How could Shang’s son deal with the situation? AN SW ER S - P RO VI DI NG E VE RY DA Y CA RE • Le ss on 1 iS u p p o rt In te rv e n ti o n M an u al 120 iS u p p o rt In te rv e n ti o n M an u al How could Mary deal with this situation after Ben is discharged home? 8 Mary needs to let Ben make the decision about when to drink. This answer is not so good even though she is respecting Ben’s autonomy. Since people with dementia have decreased thirst sensation, it could be dangerous to leave it up to them whether to drink or not without reminding them. If not reminded, Ben may get dehydrated again and collapse. 9 Mary needs to ensure that Ben drinks 8-10 glasses of water during the day. This is a good response. Mary notices that Ben may forget to drink, so she is trying to help her husband drink enough water every day. 9 Mary records the time and the amount of fluid Ben actually consumes. This is a good response. It can be helpful to establish a routine and record the number of glasses Ben drinks from breakfast time to dinner time. Drinking after dinner time may potentially increase night time visits to the bathroom. 3. Check your understanding Severe dehydration. AN SW ER S - P RO VI DI NG E VE RY DA Y CA RE • Le ss on 1 iS u p p o rt In te rv e n ti o n M an u al 121 1. Improve eating and prevent weight loss In the late stages of dementia, a person living with dementia may experience difficulty chewing and swallowing. Reduced abilities to smell, taste and see may also happen due to ageing and dementia. These can have a negative impact on the person’s health. Depression and changes in eating patterns may also impair eating and digestion. Let’s look at an example Chiu has been living with dementia for 9 years and is cared for by her daughter, Ling. Recently, Ling notices that her mother sleeps during the day and is very difficult to wake and assist with her meals during the normal mealtimes. Ling believes that her mother is not hungry and does not want to disturb her sleep. A recent check-up showed that Chiu has lost 2.5 kg since the last check-up 5 weeks ago (5% of her body weight). Why is this lesson important? Dementia can affect eating and drinking in various ways depending on the stage of dementia and other health conditions. How will this lesson help me? By learning how to improve eating and drinking, prevent weight loss and promote drinking and eating safely. What will I learn? 1. Improve eating and prevent weight loss. 2. Help the person you care for to eat safely and prevent aspiration pneumonia. MODULE 4 Le ss on 2 . E at in g, d rin ki ng a nd p re ve nt in g he al th p ro bl em s Lesson 2. Eating, drinking and preventing health problems iS u p p o rt In te rv e n ti o n M an u al 122 What would you advise Ling to do to improve Chiu’s eating? Please select all the responses that you feel are appropriate. „ Be flexible to have meals when her mother is awake. „ In a diary, keep a record of what and how often her mother eats. „ Ensure Chiu has access to foods she enjoys eating. 2. Help the person you care for to eat safely and prevent aspiration pneumonia People with dementia may experience the problems listed below. z People with dementia may not be able to judge what can or cannot be eaten. They may eat inedible materials that are within reach when feeling hungry. Make sure to keep inedible materials and chemicals in safe places. z If the person is in the late stages of dementia, they may experience swallowing difficulties that can cause a lung infection called aspiration pneumonia. Aspiration pneumonia occurs when food is swallowed in the wrong way and goes into the person’s lungs instead of their stomach. This can then cause an infection. Eating, drinking and feeding methods may need to be modified to prevent this life-threatening problem. 1. Check your understanding How to improve eating and prevent weight loss. MODULE 4 Le ss on 2 . E at in g, d rin ki ng a nd p re ve nt in g he al th p ro bl em s iS u p p o rt In te rv e n ti o n M an u al 123 What do you think Ella should do? Please select all the responses that you feel are appropriate. „ Recognize that she needs to lock household chemicals, such as dishwashing soap, in a cabinet. „ Leave some inedible household materials in the places Oliver is able to reach, because she thinks Oliver should be taught that those cannot be eaten. MODULE 4 Le ss on 2 . E at in g, d rin ki ng a nd p re ve nt in g he al th p ro bl em s 2. Check your understanding Inedible materials. Inedible materials Oliver has been living with dementia for 10 years and is cared for by his wife, Ella. Ella starts to observe her husband closely during the day. Recently, Ella notices that the soaps she put in the kitchen and bathroom have disappeared. She also notices that her husband is eating the flowers that she puts on the dining table. She sees Oliver go to the kitchen and mistakenly pick up a soy sauce bottle and even a bottle of dishwashing detergent to drink. iS u p p o rt In te rv e n ti o n M an u al 124 What do you think Wei should do? Please select all the responses that you feel are appropriate. „ Learn how to make healthy, soft foods and thickened drinks for Lu. „ Not pay attention to how Lu is sitting when they are helping her eat. A healthy soft diet can be made by hand without using an electric blender. Thickened fluids can be made by adding corn flour to water or other fluids while heating and stirring it, until it thickens. Note: commercial stir-in thickeners are available in the supermarket in many countries. MODULE 4 Le ss on 2 . E at in g, d rin ki ng a nd p re ve nt in g he al th p ro bl em s 3. Check your understanding Helping a person to eat safely. Tip Helping a person to eat safely Lu has been living with dementia for 10 years and is bedridden. Her husband, Wei, helps her to eat safely. Recently, he found Lu has difficulty swallowing soft foods that he makes for her. He also notices that she coughs when she drinks something. She seems to have a high temperature and is admitted to the hospital. Lu is diagnosed with aspiration pneumonia. After a month of treatment in the hospital, Lu has recovered and is discharged home. The doctor orders a healthy, soft diet and thickened drinks for Lu to consume at home to prevent future aspiration pneumonia. iS u p p o rt In te rv e n ti o n M an u al 125 You finished this lesson, well done! MODULE 4 Le ss on 2 . E at in g, d rin ki ng a nd p re ve nt in g he al th p ro bl em s Let’s review what you have learned z You can modify eating patterns for the person you care for to improve nutrition. z You can help the person living with dementia to eat and drink safely by keeping inedible materials and household chemicals in a safe place. z You can help prevent aspiration pneumonia by modifying the foods and drinks that they eat and positioning the person you care for in an upright position when helping them eat. iS u p p o rt In te rv e n ti o n M an u al 126 iS u p p o rt In te rv e n ti o n M an u al What would you advise Ling to do to improve Chiu’s eating? 9 Be flexible to have meals when her mother is awake. This is a good response. People in late stages of dementia need rest, so flexibility in planning meals will be very helpful when they are sleeping during normal mealtimes. 9 Keep a record of what and how often her mother eats in a diary. This is a good response. Recording what people with dementia eat is important. This way, carers will better understand when and what kind of food is needed for sufficient food intake. 9 Ensure Chiu has access to foods that she enjoys eating. This is a good response. What foods did she enjoy eating before her diagnosis of dementia? What foods does she seem to enjoy now? 1. Check your understanding How to improve eating and prevent weight loss. ANSWERS - PROVIDING EVERYDAY CARE Lesson 2. Eating, drinking and preventing health problems MODULE 4 AN SW ER S - E AT IN G, D RI NK IN G AN D PR EV EN TI NG H EA LT H PR OB LE M S • L es so n 2 iS u p p o rt In te rv e n ti o n M an u al 127 iS u p p o rt In te rv e n ti o n M an u al What do you think Ella should do? 9 Recognize that she needs to lock household chemicals, such as dishwashing soap, in a cabinet. This is a good response. Keeping these dangerous things away will help protect the person living with dementia. 8 ✗Leave some inedible household materials in the places Oliver is able to reach because she thinks that Oliver should be taught that those cannot be eaten. This is not a good response. People in late stages of dementia can have a changed judgement of what they can or cannot eat. Keeping these dangerous things away from them is very important. How can Wei help Lu? 9 Learn how to make healthy, soft food and thickened drinks for Lu. This is a good response. Providing healthy, soft food and thickened drinks will make it easier for people in the late stage of dementia to continue to eat and drink on their own and maintain a healthy weight. 8 ✗Not pay attention to how Lu is sitting when they are helping her eat. This is not a good response. They should sit Lu in an upright position which will help her eat and drink better and prevent aspiration pneumonia. 2. Check your understanding Inedible materials. 3. Check your understanding Helping a person to eat safely. MODULE 4 AN SW ER S - E AT IN G, D RI NK IN G AN D PR EV EN TI NG H EA LT H PR OB LE M S • L es so n 2 iS u p p o rt In te rv e n ti o n M an u al 128 1. Possible solutions for problems such as urinating on the floor or losing bladder control Urinating on the floor Dementia can affect a person’s ability to find their way to the bathroom and identify the toilet and/or toilet seat. You should not blame the person living with dementia for this behaviour, nor punish them as this type of response will cause them and yourself stress. Modifying your house may help them use the bathroom. Why is this lesson important? Poor toileting and incontinence may lead to infections and other health problems, low self-esteem and withdrawal from social activities for a person living with dementia. How will this lesson help me? This lesson will help you think about the health concerns, and assist the person you care for with using the toilet and continence. What will I learn? 1. Possible solutions for problems such as urinating on the floor or losing bladder control. 2. Using incontinence aids and equipment. MODULE 4 Le ss on 3 . T oi let in g an d co nt in en ce ca re Lesson 3. Toileting and continence care iS u p p o rt In te rv e n ti o n M an u al 129 Zhen is taking care of her husband, Fu, since he developed vascular dementia several years ago. Fu is able to go to the toilet himself without assistance, but recently, Zhen finds Fu urinating on the floor outside the toilet. Let’s look at an example Below are some tips in case the person you care for experiences difficulties using the toilet. z Put an image of a toilet on the toilet door to help them find it. z Provide directions to the toilet if they are unable to find it. z Provide adequate nightlights in the hallway between the bedroom and the toilet. z Use contrasting colours for the toilet seat. z Change the person’s trousers to some that are easier to remove. z Provide step-by-step instructions to the person if they forget how to use the toilet. What do you think is the right response for Zhen? Please select the correct answer. „ Make some simple changes to the environment and clothing, such as putting an image of a toilet on the bathroom door, using a contrasting colour for the toilet seat or changing Fu’s trousers to a pair of pants that does not need a belt. „ Tell her husband, Fu, that he is making trouble and punish him by not taking him for his daily walk in their neighbourhood. 1. Check your understanding Prevent urinating on the floor. Tip MODULE 4 Le ss on 3 . T oi let in g an d co nt in en ce ca re iS u p p o rt In te rv e n ti o n M an u al 130 Contributing factors Recommended solutions A long distance to go to the toilet in the house Public toilet that is at a distance from the house Not being able to find the toilet Not enough colour contrast of the toilet seat Not enough lighting in the hallway Not enough lighting in the toilet z Direct the person you care for to the toilet z Provide a bedside commode at night z Use nightlights in the bedroom and the house z Provide a commode for them to use in the house z Put a picture of a toilet on the toilet door z Replace the toilet seat with a different colour to increase the contrast z Provide adequate lighting in the hallway z Provide adequate lighting in the toilet What other factors may contribute to urinating on the floor or losing bladder control? Le ss on 3 . T oi let in g an d co nt in en ce ca re iS u p p o rt In te rv e n ti o n M an u al 131 Contributing factors Recommended solutions Narrow toilet doors that do not allow the walker or wheelchair to pass Visual impairment Unable to undo trousers Forgetting what to do in the toilet z Modify the door opening to allow a walker or wheelchair to pass z Direct the person you care for to the toilet during the day z Provide a bedside commode at night z Change trousers to ones that are easily undone and removed z Assist the person you care for to pull on and do up trousers z Remind the person you care for of the activities they need to do z Provide step-by-step instructions for them to use the toilet Le ss on 3 . T oi let in g an d co nt in en ce ca re iS u p p o rt In te rv e n ti o n M an u al 132 What do you think is the right response for Joshua? Please select the correct answer. „ Since this is an embarrassing situation for Joshua, he should stop taking his mother shopping. „ Joshua should try to make sure that his mother uses the toilet before leaving to go shopping. MODULE 4 Le ss on 3 . T oi let in g an d co nt in en ce ca re 2. Check your understanding Dealing with losing bladder control. Urinating in public places Dementia affects the person’s ability to explain their needs, for example needing to go to the bathroom. Additionally, dementia can affect a person’s judgement of what is normal or not in public. You could help prevent these accidents (incontinence) by maintaining a regular, daily schedule to assist the person you care for to go to the toilet. Identifying how often they used the toilet before they had dementia might be helpful. You can also identify whether the person you care for needs to go to the bathroom by the way they behave, e.g. if they become agitated, stressed, anxious or restless. Let’s look at an example Joshua is taking care of his mother Esther, who received a diagnosis of dementia 5 years ago. Joshua usually takes his mother shopping in the neighbourhood as she enjoys meeting people. Recently, Joshua notices that his mother has lost bladder control during the day. iS u p p o rt In te rv e n ti o n M an u al 133 06:00-09:00 09:00-12:00 12:00-15:00 15:00-18:00 18:00-21:00 21:00-00:00 0:00-03:00 03:00-06:00 Time Number of trips to the toilet Number of times lost control of bladder or bowel What possible causes did you observe? Toilet use diary Date: To improve bladder or bowel control, it may help to fill out a toilet diary. Le ss on 3 . T oi let in g an d co nt in en ce ca re iS u p p o rt In te rv e n ti o n M an u al 134 There are numerous disposable and/or washable incontinence aids, pads and equipment. When selecting products, you should consider their cost, effectiveness, comfort and convenience. For bedridden males, using urinals to collect urine may help. Some of these urinals are designed to prevent the backward leaking of urine. In the late stages of dementia, the person living with dementia may not be able to control their bladder and bowel movements. Before using any incontinence aids and equipment, you should ask a health professional to help identify the cause(s) of incontinence, as these may be treatable and therefore reversible. Tip MODULE 4 Le ss on 3 . T oi let in g an d co nt in en ce ca re 2. Using incontinence aids and equipment iS u p p o rt In te rv e n ti o n M an u al 135 Let’s look at an example Gloria is in a late stage of Alzheimer’s disease and is living with her son’s family. Her daughter-in-law, Marina, is taking care of her. Since Gloria cannot control her bladder or bowel movement, the doctor suggests that Marina try incontinence pads for Gloria. In the beginning, Marina encounters a number of problems: z Gloria constantly takes the pad off and throws it on the floor. z Gloria still has wet pants even when using incontinence pads. z Gloria has skin problems in her genital area. MODULE 4 Le ss on 3 . T oi let in g an d co nt in en ce ca re 3. Check your understanding Use of personal hygiene products. What do you think is the right response for Gloria? Please select the correct answer. „ Marina should force Gloria to wear the pad. „ Marina should remind her mother-in-law to use the bathroom at scheduled times if she is not doing so herself. iS u p p o rt In te rv e n ti o n M an u al 136 Tip Constantly taking the pad off and throwing it on the floor Still having wet pants even while using the incontinence pads Having sore or irritated skin in the genital area Having fever, being in pain, strong smelling urine z Feeling uncomfortable with the pad z The pad size is wrong z The pad is wet and needs to be changed z Check whether the pad size is correct z Change the wet pad on time z Consult the doctor regarding the person’s behaviour z Use the right size and type of pad z Maintain scheduled trips to the toilet to minimize the use of pads z Select suitable pad size and type z Change the soiled pad on time and maintain hygiene around genital area z Apply protective creams or lotions that maintain healthy skin z See the doctor z Maintain an intake of 6-8 glasses of water or juice per day except if the person is under fluid or dietary restriction z Maintain good genital care z The pad size is incorrect z The schedule for using the toilet has not been maintained z Incontinence pads can cause skin breakdown z Unsuitable pad size and delaying changes of soiled pads in a timely manner can cause skin infection z Urinary tract infections are triggered by a number of factors, including incontinence and poor genital care Below are some tips for incontinence care. Problems Possible causes Recommended solutions Le ss on 3 . T oi let in g an d co nt in en ce ca re iS u p p o rt In te rv e n ti o n M an u al 137 Let’s review what you have learned z Do not blame the person after any accidents, such as urinating on the floor. z Modify the environment to reduce the chance of bladder and bowel accidents (for example, put a picture of a toilet on the bathroom door). z Take the person living with dementia to the toilet regularly to reduce accidents. z The frequency of toilet visits will need to be established based on the toilet pattern that the person living with dementia had before the onset of dementia. z If these changes do not help, incontinence aids and equipment may help. z Be aware that the use of incontinence aids can irritate the skin if used incorrectly. z Maintain good genital care to reduce the risk of a urinary tract infection. z If the person living with dementia is not under fluid restriction, encourage them to drink 6-8 glasses of water or juice per day to help prevent urinary tract infections. MODULE 4 Le ss on 3 . T oi let in g an d co nt in en ce ca re You finished this lesson, well done! For more tips on how to stay in control of your feelings please refer back to Lesson 3.Thinking differently in Module 3. Tip iS u p p o rt In te rv e n ti o n M an u al 138 iS u p p o rt In te rv e n ti o n M an u al 9 Make some simple changes to the environment and clothing, such as putting an image of a toilet on the bathroom door, using a contrasting colour for the toilet seat or changing Fu’s trousers to a pair of pants that doesn’t need a belt. This is the best answer. People with dementia may have difficulties finding and using the toilet, so these changes could help Fu. What do you think is the right response for Zhen? 8 Tell her husband that he is making trouble and punish him by not taking him for his daily walk in their neighbourhood. This is not a good answer. You should never threaten people with dementia in this way. Fu will feel ashamed and embarrassed and this response could cause him to become upset. 1. Check your understanding Prevent urinating on the floor. ANSWERS - PROVIDING EVERYDAY CARE Lesson 3. Toileting and continence care MODULE 4 AN SW ER S - P RO VI DI NG E VE RY DA Y CA RE • Le ss on 3 iS u p p o rt In te rv e n ti o n M an u al 139 iS u p p o rt In te rv e n ti o n M an u al 8 ✗Since this is an embarrassing situation for Joshua, he should stop taking his mother shopping. This is not the best response because his mother will miss out on a very important pleasant activity. What do you think is the right response for Joshua? 9 Joshua should try to make sure that his mother uses the toilet before leaving to go shopping This is a good response. It is a good way to help prevent Esther from losing bladder control. 8 Marina should force Gloria to have the pad on. This is not the right answer! It’s very important to check why a person living with dementia may feel uncomfortable with the pad. Is the size wrong? Is the pad wet and does it need to be changed? What do you think is the right response for Marina? 9 Marina should remind her mother-in-law to use the toilet at scheduled times if she is not doing so herself. This is the best answer. Scheduled toilet visits may help minimise incontinence and the need for pads. 2. Check your understanding Dealing with losing bladder control. 3. Check your understanding Use of personal hygiene products. AN SW ER S - P RO VI DI NG E VE RY DA Y CA RE • Le ss on 3 iS u p p o rt In te rv e n ti o n M an u al 140 1. Modifying the environment to make personal care easier There are different reasons for not being able to perform personal care. One reason is that people with dementia may not find the things that they need for personal care. For example, when you cannot find your toothbrush and toothpaste due to memory loss, it will be difficult to brush your teeth. However, you can modify the environment to make it easier for them to find things that are needed for personal care. Why is this lesson important? Dementia affects people’s ability to maintain personal care, for example brushing teeth, showering/bathing and grooming. Therefore, assistance with maintaining good personal care is very important. Poor personal care may lead to infections and other health problems, low self-esteem and withdrawal from social activities for people with dementia. How will this lesson help me? This lesson will help you think about the health concerns of the person you care for and assist them with personal care. What will I learn? 1. Modifying the environment to make personal care easier. 2. Tips for daily dressing, oral care and assisting in bathing. MODULE 4 Le ss on 4 . P er so na l c ar e Lesson 4. Personal care iS u p p o rt In te rv e n ti o n M an u al 141 What would you think is the right response for Mohammed? Please select the correct answer. „ Put personal care items in the order of use and label them with large print words and different colours for Mariam to read. „ Ask their daughter-in-law to take Mariam from the table to the bathing room and assist her with washing and changing clothes. Let’s look at an example Mariam has Alzheimer’s disease, but she is able to care for herself without assistance from family members. Recently, her husband, Mohammed, notices that she sits at the table for breakfast in a nightgown without having washed her face, brushed her hair, or doing her make-up as she usually does. There may be several reasons why Mariam may not undertake personal care before breakfast anymore. One of them is that she may be depressed. For more information on depression please see Lesson 4. Depression, anxiety or apathy in Module 5. Below are some tips that may help people with dementia find items or places, and to do personal care activities independently. z To find the bathroom or toilet: put a picture or words on the bathroom door or direct the person to the bathroom. z To find personal care materials: make items easy to see in the bathroom, label items with their name, use pictures or words on the bathroom wall to point out items, use contrasting colours. z To help turn the tap on and off: use colour indicators to label the direction for turning the tap on and off, instruct the person to turn the tap on and turn off, assist if needed. MODULE 4 Le ss on 4 . P er so na l c ar e 1. Check your understanding Promoting personal hygiene. Tip iS u p p o rt In te rv e n ti o n M an u al 142 2. Tips for daily dressing, oral care and assisting in bathing Difficulties choosing the right clothes or dressing appropriately Dementia can affect the person’s ability to choose clothes and dress appropriately. You can assist the person you care for to choose clothes and to dress in a way that makes the most use of their remaining skills. You should not take over these tasks when the person living with dementia can still perform them. What would you think is the right response for Jane? Please select the correct answer. „ Tell Ted that he needs to be less messy, choose clothes for Ted and dress him. „ Remind Ted to lay out his clothes in the evening and encourage him to wear pants that do not need a belt and shoes that do not need laces. Let’s look at an example Ted has Alzheimer’s disease and is cared for by his wife Jane. Ted used to lay out his clothes for the next day in the evening. Recently, Jane found that Ted forgets to do this and is inclined to wear the same clothes every day. Jane also observes that Ted leaves some buttons of his shirt undone, his belt unbuckled and forgets to lace up his shoes. MODULE 4 Le ss on 4 . P er so na l c ar e 2. Check your understanding Getting dressed. iS u p p o rt In te rv e n ti o n M an u al 143 Difficulties brushing one’s teeth Dementia not only affects memory but also organization, coordination and concentration, which are required to perform mouth care. Poor mouth care is associated with poor appetite, bad breath, infections of the teeth or gums and other health problems. The goal of assisting with mouth care is to help the person make the most use of their remaining skills. What would you think is the right response for Lingling? Please select the correct answer. „ Put Guoliang’s dentures into his mouth without asking. „ Instruct her husband how to brush his teeth step-by-step and praise him when he is doing well. Let’s look at an example Guoliang has Alzheimer’s disease but is able to brush his teeth without assistance. Recently, Guoliang’s wife, Lingling notices that her husband makes a big mess in the bathroom with water and toothpaste on the countertop and the floor. She also observes that her husband is unable to brush his teeth in the order that he usually does and can’t insert his artificial dentures himself. MODULE 4 Le ss on 4 . P er so na l c ar e 3. Check your understanding Promoting mouth care. iS u p p o rt In te rv e n ti o n M an u al 144 Please select any mouth care steps that the person you care for needs help with from the list below. „ Putting toothpaste on the toothbrush „ Brushing teeth in an order that will clean teeth and gums „ Rinsing and cleaning mouth „ Using floss or toothpick to clean between teeth daily „ Applying balm to moisturize lips when needed „ Checking for signs of mouth infections or toothache when needed „ Removing, washing, cleaning, and storing artificial dentures if needed 1. Activity MODULE 4 Le ss on 4 . P er so na l c ar e iS u p p o rt In te rv e n ti o n M an u al 145 Difficulties performing personal care and bathing Dementia may also affect the person’s ability to wash their hair and take a shower or a bath. A person living with dementia may view assistance with personal care as a threat to his or her privacy, safety and security, and may refuse or resist any help. Let’s look at an example Feng has Alzheimer’s disease and is cared for by his wife Yuan. Due to her age, Yuan is not strong enough to help bathe Feng anymore, so the family decides that the three sons-in-law could take turns to help with Feng’s weekly bath. The oldest son-in-law is very kind to Feng and reassures him that he will make him comfortable during the bath. He takes Feng to the bathroom and starts to undress him. Feng suddenly pushes him away, shouts at him and tells him to go away. MODULE 4 Le ss on 4 . P er so na l c ar e 4. Check your understanding Resisting help with bathing. What would you think is the right response for Feng’s family? Please select the correct answer. „ Since the family notices that Feng thought his son-in- law was a stranger, Yuan decides to be with Feng while her son-in-law bathes him. „ They should say to Feng that he should be grateful for the help he receives and if he continues to behave this way, he will be sent to a long-term care facility. iS u p p o rt In te rv e n ti o n M an u al 146 People with dementia may show resistance during personal care, or even become aggressive like Feng in this example. To read more about how to prevent or deal with aggression, please refer to Lesson 3. Dealing with behaviour changes that might happen in people with dementia in Module 5. Below are some tips for assisting with bathing. z Identify the times of day that the person you care for prefers to have a bath/shower. z Switch from a shower/bath to a sponge bath. (Note: bath tubs are particularly difficult as they may lead to falls and it may be hard for the carer to lift the person living with dementia out of the tub.) z If using the shower or bathtub, use a non-slip bath or shower mat to help prevent falls. z Adaptive seating or equipment, such as grab bars and shower chairs, may help. z For people with dementia who are afraid of water, try to reduce the water flow. Tip MODULE 4 Le ss on 4 . P er so na l c ar e When assisting with personal care, ask the person living with dementia for their preferences whenever possible and respect their choice. Reassure them that they are safe and comfortable. iS u p p o rt In te rv e n ti o n M an u al 147 Select any personal care activities that the person living with dementia needs help with. Coach them through the individual steps involved in each activity. „ Selecting daytime clothing „ Undressing before shower/bath „ Taking pyjamas off/on „ Shaving „ Washing and drying face „ Applying body lotion to moisturize skin „ Drying body after washing „ Combing hair „ Preparing for a shower/bath „ Putting on make-up „ Putting non-slip mats on the floor „ Washing hair/body during shower/bath „ Washing and drying hands „ Using towel to dry hair/body „ Washing and drying genital areas „ Dressing after shower/bath „ Washing and drying feet „ Checking for signs of skin problems „ Changing night clothing into daytime clothing „ Using electrical hairdryer „ Turning the tap on, adjusting the water temperature and preparing for bathing „ Cutting fingernails and toenails when needed MODULE 4 Le ss on 4 . P er so na l c ar e 2. Activity iS u p p o rt In te rv e n ti o n M an u al 148 Let’s review what you have learned z Engage the person living with dementia in personal and mouth care as long as possible, using remaining skills. z Modify the environment, for example by providing guidance, encouraging them to select different types of clothes or providing seating while performing personal care. z Engage the person you care for in daily decision making, for example what clothes they would like to wear. z Keep in mind that not have enough assistance with personal care may cause agitation or aggression. z Be compassionate and try to understand why they resist being assisted with personal care. You finished this lesson, well done! MODULE 4 Le ss on 4 . P er so na l c ar e iS u p p o rt In te rv e n ti o n M an u al 149 iS u p p o rt In te rv e n ti o n M an u al 9 Put personal care items in the order of use and label them with large print words and different colours for Mariam to read. This is a good response. People with dementia may lose the ability to find items that are not obvious. Creating an ‘easy to find’ environment for them is very important. What do you think is the right response for Mohammed? 8 Ask their daughter-in-law to take Mariam from the table to the bathing room and assist her with washing and changing clothes. This is not the right answer. Mohammed needs to first find out what the reason is for her not doing the personal care before breakfast anymore. Also, instead of assuming, Mohammed needs to ask his wife first if she wants help from their daughter-in- law. Not asking may upset her. ANSWERS - PROVIDING EVERYDAY CARE Lesson 4. Personal care MODULE 4 AN SW ER S - P RO VI DI NG E VE RY DA Y CA RE • Le ss on 4 1. Check your understanding Promoting personal hygiene. iS u p p o rt In te rv e n ti o n M an u al 150 iS u p p o rt In te rv e n ti o n M an u al What do you think is the right response for Jane? 8 Tell Ted that he needs to be less messy, choose clothes for Ted and dress him. This answer is not helpful. It is not Ted’s fault that he is finding this task challenging. With some extra help, Ted may still be able to dress himself. 9 Remind Ted to lay out his clothes in the evening and encourage him to wear pants that do not need a belt and shoes that do not need laces. You are right! It will enable Ted to dress himself, which may also help improve his sense of self-worth. 8 Put Guoliang’s dentures in his mouth without asking. This is not the right answer. Lingling is completely taking over care tasks and not even asking his permission. This response may upset Guoliang. 9 Instruct Guoliang how to brush his teeth in a step-by- step manner and praise him when he is doing well. This is the best answer. Guoliang maintains a level of independence in this way, which may also help to improve his sense of self-worth. MODULE 4 AN SW ER S - P RO VI DI NG E VE RY DA Y CA RE • Le ss on 4 2. Check your understanding Getting dressed. 3. Check your understanding Promoting mouth care. What do you think is the right response for Lingling? iS u p p o rt In te rv e n ti o n M an u al 151 iS u p p o rt In te rv e n ti o n M an u al 9 Since the family notices that Feng thinks that his son-in-law is a stranger, Yuan decides to be with Feng while her son-in-law bathes him. Good advice! A person living with dementia may no longer recognize people they used to know, so giving them plenty of transition time to get familiar with people is very important. MODULE 4 AN SW ER S - P RO VI DI NG E VE RY DA Y CA RE • Le ss on 4 4. Check your understanding Resisting help with bathing. 8 They should say to Feng that he should be grateful for the help that he receives and if he continues to behave in this way, he will be sent to a long-term care facility. This is bad advice. Never threaten people with dementia in this way. Saying things like this will not help the situation and will make Feng feel very distressed. What do you think is the right response for Feng’s family? iS u p p o rt In te rv e n ti o n M an u al 152 1. Establishing routines for the person with dementia during the day When someone is living with dementia, it is important to create an environment that supports them to do the things that they like to do. This is also true for you. It is important to try and maintain routines and activities that are familiar to the person living with dementia, and to adapt them as their abilities change. Why is this lesson important? It is important to maintain routines and activities that are familiar to a person living with dementia to help create an enjoyable day. How will this lesson help me? By learning how to adapt routines and activities as the abilities of the person living with dementia change. What will I learn? 1. Establishing routines for the person with dementia during the day. 2. Adapting routines to the changing abilities of the person you care for. Lesson 5. An enjoyable day MODULE 4 Le ss on 5 . A n en jo ya bl e d ay iS u p p o rt In te rv e n ti o n M an u al 153 What is a routine? A routine is something that a person does every day or almost every day. It is important to try and continue the routine of the person living with dementia for as long as possible. This is reassuring and can reduce stress at home. Be aware of the person’s usual routine. If there has not been a routine, for example in the evening, then it is helpful to develop one and follow it regularly. This might include drinking a cup of tea, listening to soothing music, or saying prayers. It is helpful to have routines for other times of the day as well, such as immediately after getting up from bed in the morning, when having the midday meal or planning what to do in the afternoon. The simpler and easier these routines are to follow, the more likely they will reassure the person living with dementia and reduce stress at home. Morning time: starting the day It’s helpful to have a set time for waking up and then several things to do in sequence to get the day started. Think of bathing, brushing one’s teeth, getting dressed and then sitting down for breakfast. As dementia progresses, the person you care for will need help with each of these activities but one way to lower stress is to keep the basic routines as similar as possible. During the day, it’s also important to try and make time for activities that the person living with dementia enjoys, such as visiting a friend or another family member, going for a walk, reading, playing games, or listening to the radio. These activities will depend on the person’s prior interests and current abilities. In the early stages of dementia, your family member or friend may be able to do things that they like to do with minimal guidance. However, as the disease progresses, activities will need to be changed or modified so that they can still enjoy them. It’s important to be flexible and creative in figuring out the routines and then adapting them as needed over time. MODULE 4 Le ss on 5 . A n en jo ya bl e d ay iS u p p o rt In te rv e n ti o n M an u al 154 What suggestions do you have for Penny? Please select the correct answer from the responses below. „ If Penny suggests keeping to the routine by drinking tea first, it is likely that Martha will go for a walk afterwards. „ Penny should ask Martha what activities she is used to and in what order she would like to do them. „ Penny should force Martha to go for a walk because it was advised by the doctor. It is important to keep routines (something the person living with dementia does every day or almost every day) for as long as possible. This may help to avoid confusion, agitation, restlessness and boredom. It also helps to honour the person’s dignity. Think for a moment about how you might feel if your routines were changed or planned by another person. MODULE 4 Le ss on 5 . A n en jo ya bl e d ay 1. Check your understanding Morning routines. Keep in Mind Let’s look at an example Martha has dementia and is used to drinking tea immediately after getting ready in the morning. Her daughter Penny really wants to encourage her mother to walk every day, as recommended by her doctor. Penny is not aware of her mother’s usual routine, so when she tries to get Martha to go for a walk right after breakfast, Martha refuses. iS u p p o rt In te rv e n ti o n M an u al 155 z It is important to develop routines for morning activities and maintain them as long as possible. z Make adjustments as needed when the abilities of the person living with dementia change. 2. Adapting routines to the changing abilities of the person you care for It is important to adapt routines as the abilities of the person living with dementia change. Here are some common routines to establish during the day for a person living with dementia. In the morning Wake up at the same time every day z Adaptation: help might be needed to wake up because the person with dementia may not be able to set the alarm correctly. Have breakfast at a fixed time. In the earlier stages of dementia, your family member or friend might be able to make their own breakfast. z Adaptation: the person with dementia may need someone to lay out ingredients. Later on, they may need more help with preparing and eating breakfast. Performing grooming activities, such as brushing teeth, bathing/ cleaning, getting dressed. In the early stages, the person you care for may be able to do all of these activities without help. z Adaptation: items such as the toothbrush, toothpaste, etc. can be laid out in the bathroom in plain view to prompt the activity. In the later stages of dementia, it may be necessary for someone to do these activities for, or with, the person living with dementia. For more tips, please refer back to Lesson 4. Personal care in this module. MODULE 4 Le ss on 5 . A n en jo ya bl e d ay Keep in Mind iS u p p o rt In te rv e n ti o n M an u al 156 MODULE 4 Le ss on 5 . A n en jo ya bl e d ay What suggestions do you have for Penny? Please select the correct answer from the responses below. „ Penny should put away the baking and cooking pans and tell her mother that it’s just not possible to do this anymore. „ Penny should go shopping with her mother and buy easy to prepare cakes and cookies, “out of the box”, with limited added work to enable Martha to continue to do some cooking and baking. „ As Martha’s abilities change, Penny could plan some time during the afternoon to bake and cook with her mother. 2. Check your understanding Maintaining prior activities and interests during the day. Let’s look at an example Martha loves baking and used to prepare special cakes and cookies for family gatherings. Now that she has dementia, she sometimes forgets the ingredients and the order in which to put them in. At first, Martha uses a cookbook to help her continue baking but she finds this increasingly difficult. The cakes and cookies do not taste very good and have to be thrown away. Penny wants to help her mother keep up this activity. During the day It is helpful to plan activities that the person you care for enjoys doing, based on their prior interests and current abilities. iS u p p o rt In te rv e n ti o n M an u al 157 What suggestions do you have for Penny? Please select the correct answer from the responses below. „ Penny could ask another family member to help Martha. „ Penny could ask other people outside the family to walk with Martha to the community centre, such as a neighbour. „ Penny could tell her mother to do a quiet activity in the afternoons such as watching television or listening to the radio. It is important to respect the daily routines of the person you care for and maintain them for as long as possible. When this is no longer possible, adapt the routine to the best of your ability so that the key activities that are important to the person with dementia are maintained for as long as possible. MODULE 4 Le ss on 5 . A n en jo ya bl e d ay 3. Check your understanding Maintaining activities and interests outside the house. Keep in Mind What is sundowning? Sometimes people with dementia become more agitated, aggressive or confused in the late afternoon or early evening. This is often referred to as ‘sundowning’. It can be particularly distressing for carers. The exact cause of sundowning is not yet clear but a loss of routine might be one of the reasons. Try to give the person something meaningful to do at this time of day. Let’s look at an example Martha likes to go to a community centre every day from 12:00 until 15:00. She has lunch there and meets friends to do activities together. At first Martha walks there by herself but as her memory loss becomes more severe, she cannot find her way to the centre anymore. Penny asks another family member to take Martha to the centre and bring her back home. This works well for a while but eventually the family member is unable to take Martha. Penny does not know what to do since she cannot be with Martha every afternoon. iS u p p o rt In te rv e n ti o n M an u al 158 At bedtime z For the morning, afternoon and bedtime, establish and maintain routines for as long as possible, but be prepared to adapt these as the abilities of the person living with dementia change over time. z Printing out a list of daily routines can help. Do one for each day and put it up in a prominent place. MODULE 4 Le ss on 5 . A n en jo ya bl e d ay What suggestions do you have for Penny? Please select the correct answer from the responses below. „ Penny could read to Martha for 15 minutes before she goes to sleep. „ Penny should take the books out of Martha’s room. „ Penny should get some books that have more pictures than words or audiotapes for Martha. 4. Check your understanding Adapting routines. Tip At night, Martha is used to reading quietly for about 30 minutes before she goes to sleep. As her dementia progresses, she finds that she is no longer able to read. Sometimes she is just staring at her book. She increasingly finds reading confusing. Penny wants to adapt this routine to fit Martha’s current abilities. iS u p p o rt In te rv e n ti o n M an u al 159 Do you know any of the routines of the person with dementia that you care for? Please write down any ideas that you have about routines for the person you care for and how they can be adapted. MODULE 4 Le ss on 5 . A n en jo ya bl e d ay 1. Activity iS u p p o rt In te rv e n ti o n M an u al 160 You finished this lesson, well done! MODULE 4 Le ss on 5 . A n en jo ya bl e d ay Let’s review what you have learned z Establishing routines is important for people living with dementia. z Try to keep routines similar to the ones your family member or friend had before developing dementia. z Be prepared to adapt routines as necessary as the abilities of the person living with dementia change over time. iS u p p o rt In te rv e n ti o n M an u al 161 iS u p p o rt In te rv e n ti o n M an u al 9 If Penny suggests keeping to the routine by drinking tea first, it is likely that Martha will go for a walk afterwards. Right! It will help Martha keep her routine. 9 ✓Penny should ask Martha what activities she is used to and in what order she would like to do them. Indeed! Penny can learn Martha’s routines. However, this may only work if Martha is in the early or middle stages of dementia. Later on, Martha might not be able to remember her routines. 8 Penny should force Martha to go for a walk because it was advised by the doctor. This response is not so good because it may make Martha feel agitated and upset. 1. Check your understanding Morning routines. ANSWERS - PROVIDING EVERYDAY CARE Lesson 5. An enjoyable day MODULE 4 AN SW ER S - P RO VI DI NG E VE RY DA Y CA RE • Le ss on 5 What suggestions do you have for Penny? iS u p p o rt In te rv e n ti o n M an u al 162 iS u p p o rt In te rv e n ti o n M an u al 8 ✗Penny should put away the baking and cooking pans and tell her mother that it’s just not possible to do this anymore. This is not very helpful. Penny has not tried to come up with an alternative to help her mother and it may make Martha feel upset. 9 Penny should go shopping with her mother and buy easy to prepare cakes and cookies, “out of the box”, with limited added work to enable Martha to continue to do some cooking and baking. This is a good suggestion. It respects Martha’s routine but adapts the activity to her current abilities. 9 As Martha’s abilities change, Penny could plan some time during the afternoon to bake and cook with her mother. This is an excellent plan for the future! It allows Martha to continue her routine with support as needed. MODULE 4 AN SW ER S - P RO VI DI NG E VE RY DA Y CA RE • Le ss on 5 2. Check your understanding Maintaining activities and interests during the day. What suggestions do you have for Penny? iS u p p o rt In te rv e n ti o n M an u al 163 iS u p p o rt In te rv e n ti o n M an u al 9 Penny could ask another family member to help Martha. This is a good idea. If others can come on a regular basis, this is the best solution for Martha as it maintains her routine and adapts to Martha’s changing abilities. 9 Penny could ask other people outside the family to walk with Martha to the community center such as a neighbour. This is a good response. Family is not always available and sometimes other people don’t know how they can help. This is a concrete way that Penny could ask for help. 8 Penny could tell her mother to do a quiet activity in the afternoons like watching television or listening to the radio. This is not likely to be a good solution at this time. It isolates Martha from other people and doesn’t allow her to engage in the activities that she enjoys. It might be a better solution in the later stages of dementia, when Martha’s abilities change. MODULE 4 AN SW ER S - P RO VI DI NG E VE RY DA Y CA RE • Le ss on 5 3. Check your understanding Maintaining activities and interests outside the house. What suggestions do you have for Penny? iS u p p o rt In te rv e n ti o n M an u al 164 iS u p p o rt In te rv e n ti o n M an u al 9 Penny could read to Martha for 15 minutes before she goes to sleep. This is a good idea. It helps Martha to continue enjoying reading but adapts the activity to her abilities. 8 Penny should take the books out of Martha’s room. This is not a good response because it does not recognise how important reading is to Martha. Penny should recognise that her mother and her can still share this routine; it just needs to be adapted. 9 Penny should get some books that have more pictures than words or audiotapes for Martha. This is a helpful adaption for people in the later stages of dementia who liked to read but find that they are not able to read books with a lot of words. 4. Check your understanding Adapting routines. MODULE 4 AN SW ER S - P RO VI DI NG E VE RY DA Y CA RE • Le ss on 5 What suggestions do you have for Penny? M od ul e 5 . D ea lin g wi th b eh av io ur ch an ge s DEALING WITH BEHAVIOUR CHANGES Lesson 1. Introduction to behaviour changes Lesson 2. Memory loss Lesson 3. Aggression Lesson 4. Depression, anxiety or apathy Lesson 5. Difficulty sleeping Lesson 6. Delusions and hallucinations Lesson 7. Repetitive behaviour Lesson 8. Walking and getting lost Lesson 9. Changes in judgement Lesson 10. Putting it all together 5 MODULE iS u p p o rt In te rv e n ti o n M an u al 166 MODULE 5 Why is this lesson important? Dementia changes the way that people behave, think or act. This can be distressing or upsetting not only for the person with dementia, but also for their families and carers, like you. How will this lesson help me? This lesson helps to improve your skills to prevent and cope with behaviour changes. What will I learn? 1. Behaviour changes that may be particularly stressful. 2. Understanding the cycle of behaviour change. 3. Different approaches to respond to behaviour changes. Lesson 1. Introduction to behaviour changes 1. Behaviour changes that may be particularly stressful Dementia changes the way people behave, think or act. This not only affects the person living with dementia, but can also be distressing and upsetting for carers, like you. ”Any behaviour that gets you or the person you care for upset is stressful.” In this introduction you will learn: z How you can identify behaviours that are potentially upsetting, stressful or difficult for you and the person you care for. z How you might handle behaviour changes. z How you might change circumstances to reduce or prevent behaviour changes. Le ss on 1 . I nt ro du ct io n to b eh av io ur ch an ge s iS u p p o rt In te rv e n ti o n M an u al 167 MODULE 5 Does the person you care for ever experience any of the following behaviour changes? Please select any that apply. Forgetting or losing things, not being able to recall recent events or remember dates and days of the week. Talking or acting in a threatening way, or doing things that make you feel frightened. Feeling sad, worried, frightened, frustrated or angry, being unusually emotional, crying, agitated or restless, withdrawn, unhappy, apathetic or reacting slowly. Restless at night, waking you or other family members up. Misinterpreting the world, having fixed false beliefs, things a person sees or hears that are not there, or becomes suspicious of those around them. „ Memory loss „ Aggression „ Depression, anxiety or apathy „ Difficulty sleeping „ Delusions and hallucinations: seeing or hearing things that are not there Behaviour changes Example 1. Activity Le ss on 1 . I nt ro du ct io n to b eh av io ur ch an ge s iS u p p o rt In te rv e n ti o n M an u al 168 MODULE 5 Repeating a question or an action over and over. Continuously walking around, leaving the house and getting lost. Saying the wrong thing at the wrong time, acting inappropriately in a situation, not understanding own limitations. None of these symptoms are present at this point in time. „ Repetitive behaviour: doing things over and over „ Wandering: walking around a lot „ Changes in judgement „ Not at this time Behaviour changes Example 1. Activity Many things can cause behaviour changes that are upsetting to you or the person you care for. This can have a bad effect on your relationship with the person you care for. It can even make you feel sad, angry, confused, or anxious. In some instances, you might even feel as though you can’t cope with the situation. In this lesson you will learn what you can do to reduce or prevent these situations. Remember Le ss on 1 . I nt ro du ct io n to b eh av io ur ch an ge s iS u p p o rt In te rv e n ti o n M an u al 169 MODULE 5 Understanding any behaviour change and what happens before and after the behaviour is very important. Sometimes you can reduce or even prevent certain behaviours. If you pay attention and understand what happens before or “triggers” the behaviour, this can help you to reduce or prevent the behaviour. Let’s look at the following example Kayla has dementia like the person you care for. Her husband Howard is taking care of her, like you are caring for your family member or friend. Howard often asks Kayla if she can remember who came to visit last week or what she had for dinner yesterday. Kayla cannot remember these things and gets agitated. 2.Understanding the cycle of behaviour change The diagram below shows what’s happening. “Howard is asking Kayla questions” “Howard feels frustrated” What happens before? Carer’s response to the behaviour Behaviour “Kayla can’t answer the questions and gets agitated” Le ss on 1 . I nt ro du ct io n to b eh av io ur ch an ge s iS u p p o rt In te rv e n ti o n M an u al 170 MODULE 5 What happens before the behaviour? What do you think happens before Kayla gets agitated that you might be able to change? Below are some examples. 1. Howard asks questions that Kayla cannot answer. 2. The tone of voice that Howard uses to ask these questions makes Kayla feel nervous. Now you try the next one. Please fill in your ideas on what comes before Kayla gets agitated in the box below. When you are done, check the answer section at the end of this lesson for more ideas. 1. Check your understanding Identifying what happens before the behaviour. Le ss on 1 . I nt ro du ct io n to b eh av io ur ch an ge s iS u p p o rt In te rv e n ti o n M an u al 171 MODULE 5 2. Check your understanding Different ways of responding to behaviour change. Now let’s look at Howard’s response So, what are we trying to do? We are trying to separate what comes before the behaviour and what the carer’s response is after the behaviour. How does Howard respond in this example? Howard gets frustrated because his wife Kayla forgot who came to visit and what she had for dinner. Howard can choose to change his response. Here are some responses, some are good, others are not. Please check what you think could be good responses. Howard could: „ Show that he is frustrated. „ Take a deep breath. „ Show his irritation by saying: “I already answered that, please stop bothering me”. „ Remind himself that his wife has dementia and cannot help that she forgets things. She is not forgetting on purpose. „ Next time, remember that asking her such questions will only cause frustration, not only for him, but also for his wife. „ Work with Kayla to record significant family and social events in a family diary. Le ss on 1 . I nt ro du ct io n to b eh av io ur ch an ge s iS u p p o rt In te rv e n ti o n M an u al 172 MODULE 5 3. Different approaches work at different times. What if Howard’s approach doesn’t work the first time? Different approaches work at different times, so Howard should not give up! Howard could try several approaches until he finds one that works. Here are some examples of what Howard could do: z He can ask other people’s advice, for example his health care provider. z He can also ask someone at the Alzheimer’s Association (a community based organisation that provides support for people with dementia and their carers) in his country: https://www.alz.co.uk/associations. z He can search for information on the internet. Le ss on 1 . I nt ro du ct io n to b eh av io ur ch an ge s iS u p p o rt In te rv e n ti o n M an u al 173 MODULE 5 Now think about your own situation It is important to apply what you have just learned to your own situation with the person you care for. Use the spaces below, like a diary. 2. Activity What could you do to change what happened before the behaviour in order to reduce or prevent it? What is the behaviour that was the most distressing or upsetting to you in the past month? How could you respond in that situation? Le ss on 1 . I nt ro du ct io n to b eh av io ur ch an ge s iS u p p o rt In te rv e n ti o n M an u al 174 MODULE 5 Let’s review what you have learned z People with dementia may experience behaviour changes that are distressing or upsetting to them or those around them. z It is helpful to identify what happens before the stressful behaviour to understand what might cause it or make it worse. z It is also helpful to identify how you usually respond, what you feel or what you do. z Take a deep breath and think about the best ways to respond that will be the least distressing to you and the person you care for. z Try different responses and approaches, as the first one does not always work. z Seek professional help if you cannot manage a situation. You finished this lesson, well done! Le ss on 1 . I nt ro du ct io n to b eh av io ur ch an ge s iS u p p o rt In te rv e n ti o n M an u al MODULE 5 175 iS u p p o rt In te rv e n ti o n M an u al z Kayla has dementia. Remembering who came to visit last week is difficult for her. z Kayla has dementia and cannot remember what she had for dinner. 1. Check your understanding Identifying what happens before the behaviour. ANSWERS- DEALING WITH BEHAVIOUR CHANGES Lesson 1. Introduction to behaviour changes AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 1 iS u p p o rt In te rv e n ti o n M an u al MODULE 5 176 iS u p p o rt In te rv e n ti o n M an u al AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 1 8 Show that he is frustrated. This is not the best response. Showing that he is frustrated is an inappropriate way to deal with the stressful behaviour, it may even make the person living with dementia irritable. 9 ✓Take a deep breath. This is a good response. It shows that Howard is trying to control his frustration. 8 Show his irritation by saying: “I already answered that, please stop bothering me”. This reaction is not so good, because Howard’s irritability may upset Kayla even more. 9 ✓Remind himself that his wife has dementia and cannot help that she forgets things. She is not forgetting on purpose. This is a good response, because Howard recognises that Kayla is living with dementia. 9 Next time, remember that asking her such questions will only cause frustration, not only for him, but also for his wife. This is a good response, because it may prevent this frustrating situation. 9 Work with Kayla to record significant family and social events in a family diary. This is a good response, because they can revisit the events from time to time if Kayla is missing family members and friends. 2. Check your understanding Different ways of responding to behaviour change. What are some of the ways that Howard could respond? iS u p p o rt In te rv e n ti o n M an u al MODULE 5 177 Why is this lesson important? Memory loss can be frustrating for the person living with dementia and the carer. How will this lesson help me? In this lesson you will practice several ways to respond to memory loss, and find out what may help you deal with the person’s increasing forgetfulness. What will I learn? 1. What is memory loss? 2. How to respond to memory loss? Lesson 2. Memory loss 1. What is memory loss? People with dementia will increasingly lose their memory over time. In the beginning, they may forget recent events, where they put their keys, their wallet or a particular piece of paper. They find it harder to remember phone numbers, important dates and appointments. However, past memories, such as childhood memories, are often preserved for a longer period of time. Le ss on 2 . M em or y l os s iS u p p o rt In te rv e n ti o n M an u al MODULE 5 178 1. What is memory loss? People with dementia will increasingly lose their memory over time. In the beginning, they may forget recent events, where they put their keys, their wallet or a particular piece of paper. They find it harder to remember phone numbers, important dates and appointments. However, past memories, like childhood memories, are often preserved for a longer period of time. Do s t e person you care for som times forget things? If so, what kinds of things do they forget? Please write them down. 1. Activity Le ss on 2 . M em or y l os s iS u p p o rt In te rv e n ti o n M an u al MODULE 5 179 How would you advise Maya to deal with her mother’s memory loss? Please check all the responses that you feel are appropriate from the list below. „ Ask a neighbour to go with Anne once a week to the market to buy groceries. „ Create a memory aid together with Anne, e.g. a list of groceries that Anne needs to buy, and put the list in a place where it can be seen, so that it is easy to access. „ Go out and buy groceries immediately. „ Ask: “Mom, what’s wrong with you, there is no food in the house”. „ Sit down with Anne and make a list of groceries. Go shopping together. 1. Check your understanding Forgetting to buy groceries. 2. How to respond to memory loss? In this lesson you can practice several ways to respond to memory loss, and find out what may help you deal with it. Let’s have a look at an example Anne is living with dementia. She has a daughter named Maya. They live very close to each other. When Maya goes to visit Anne’s house, she notices that the fridge or cupboard is empty. Anne often forgets what she usually buys from the market. The person you care for might also forget other things. The same goes for Anne. Le ss on 2 . M em or y l os s iS u p p o rt In te rv e n ti o n M an u al MODULE 5 180 What do you think Maya’s response should be? Please check all the responses that you feel are appropriate from the list below. „ Tell her mother what to do over the phone. „ Ask her mother what she usually does on that given day. For example, Monday is wash day; Thursday is going to the market day. „ Move in with her mother. „ Go straight over and take charge of the situation, by ordering her mother around. „ Plan to visit Anne every weekend and write out to-do lists for every day of the week. „ Hire someone to stay with her mother all the time. „ Ask her mother while on the phone to get a pencil and paper. Talk through the plan for the day together. 2. Check your understanding Forgetting daily activities. Let’s look at another example Maya and Anne are talking on the phone. Maya notices that Anne often forgets what she normally does during the day. Maya is impatient with Anne, and tells her mother, “this is getting worse”. Le ss on 2 . M em or y l os s iS u p p o rt In te rv e n ti o n M an u al MODULE 5 181 How do you think Maya should respond to this situation? Please check all the responses that you feel are appropriate from the list below. „ Maya puts notes near the clock when her mother needs to take a pill. „ Maya says, “Mom, how could you forget your medications?”, and “you know you really need them to stay healthy!” „ Maya goes through the medicine cabinet, sits down and cries about her mother’s memory loss. „ Maya goes over the medications with her mom. She purchases a pill box, and puts the pills in the box at the right day and time and calls her mom every day to instruct her to take her medications. 3. Check your understanding Forgetting medication. Sometimes memory loss can be more serious, like in the next example. Let’s look at an example Maya comes to visit and discovers that Anne is having trouble remembering which medications to take and at what time.Le ss on 2 . M em or y l os s iS u p p o rt In te rv e n ti o n M an u al MODULE 5 182 Let’s look at your own situation It is important to apply what you have learned to your own situation. How could you respond to help the person you care for deal with their memory loss? Write down some ideas. 2. Activity Le ss on 2 . M em or y l os s iS u p p o rt In te rv e n ti o n M an u al MODULE 5 183 z Memory loss is very common for people with dementia. z Memory loss can be stressful to deal with. z In case of memory loss, try a memory aid like a note, pill- box, reminder/alarm, etc. z If possible, involve the person you care for to find the best way to support them in case of memory problems. z It is important to remember that the person living with dementia is not to blame, because he/she can’t help that they forget. z When one approach doesn’t work, try another one. z Realize there may be good and bad days. z Remind yourself that memory loss is part of the disease. z Take a deep breath and think about the best ways to respond that will be the least distressing to you and the person you care for in the case of memory loss. You finished this lesson, well done! Let’s review what you have learned Le ss on 2 . M em or y l os s iS u p p o rt In te rv e n ti o n M an u al MODULE 5 184 iS u p p o rt In te rv e n ti o n M an u al Relaxation exercise - Neck movements ANSWERS - DEALING WITH BEHAVIOUR CHANGES Lesson 2. Memory loss 9 Ask a neighbour to go with Anne once a week to the market to buy groceries. This might be helpful. Anne will have groceries and a nice visit with the neighbour. 9 ✓Create a memory aid together with Anne, e.g. a list of groceries that Anne needs to buy, and put it in a prominent place, so that the list is easy to access. This is a good response. It addresses Anne’s memory loss and may become a weekly shared pleasant activity. 8 Go out and buy groceries immediately. This answer is not so good because it is a panic reaction and a one-time solution. It does not solve the problem at hand. 8 Ask: “Mom, what’s wrong with you, there is no food in the house”. This answer is not so good because Anne cannot help that she forgets to buy food and may feel embarrassed that she has done something wrong. It does not improve the situation. 9 Sit down with Anne and make a list of groceries. Go shopping together. This answer may be a good one because Maya is addressing her mother’s needs. However, she might first want to try another approach. For example, with a list of groceries that her mother may still be able to go shopping without help. 1. Check your understanding Forgetting to buy groceries. AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 2 What would you advise Maya? iS u p p o rt In te rv e n ti o n M an u al MODULE 5 185 iS u p p o rt In te rv e n ti o n M an u al Relaxation exercise - Neck movements 8 Tell her mother what to do over the phone. This response is not so good because her mother may not understand or be able to follow a phone conversation. 9 Ask her mother what she usually does on that given day. For example, Monday is wash day; Thursday is going to the market day. This response may be a good one because Maya can use this information to remind her mother. 8 Move in with her mother. This is not the right response. There are several other less drastic approaches that Maya has not yet tried. 8 Go straight over and take charge of the situation, by ordering her mother around. This response is not so good because it is a one-time solution and does not solve the problem at hand. 9 Plan to visit Anne every weekend and write out to-do lists for every day of the week. This is a good response because it may help her mother to remember. 8 Hire someone to stay with mother all the time. This is not the right response. There are several less drastic approaches that Maya has not tried yet. 9 Ask her mother while on the phone to get a pencil and paper. Talk through the plan for the day together. This is a good response because it may help her mother to remember. Maya could call her mother every morning at a certain time, and ask her to get a pencil and paper and to plan her day together. 2. Check your understanding Forgetting daily activities. What do you think Maya’s response should be? AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 2 iS u p p o rt In te rv e n ti o n M an u al MODULE 5 186 iS u p p o rt In te rv e n ti o n M an u al Relaxation exercise - Neck movements 9 Maya puts notes near the clock when her mother needs to take a pill. This may be good to do because a memory aid could help Anne remember to take her pills. 8 Maya says, “Mom, how could you forget your medications?”, and “You know you really need them to stay healthy!” This response is not helpful because Anne cannot help that she forgets to take her medications. Memory loss is part of her disease. 9 Maya goes over the medications with her mom. She purchases a pill box, and puts the pills in the box at the right day and time and calls her mom every day to instruct her to take her medications. This is a good response because this memory aid might help Anne to take medications at the right day and time. Some pill reminder boxes come with alarms that are pre-set to remind the person to independently take their medications. 9 Maya goes through the medicine cabinet, sits down and cries about her mother’s memory loss. This is not the way to deal with her mother’s memory loss. Getting upset will not solve her mother’s problem of forgetting to take medications. 3. Check your understanding Forgetting medication. How should Maya respond? AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 2 iS u p p o rt In te rv e n ti o n M an u al MODULE 5 187 Why is this lesson important? From time to time, people with dementia may become angry, aggressive or violent. This is often one of the most difficult things to cope with for carers. How will this lesson help me? This lesson helps to understand possible causes of aggression and improve your skills to prevent or deal with aggression. What will I learn? 1. Why does aggression happen? 2. How to respond to aggressive behaviour? 3. How to deal with ongoing aggression? Lesson 3. Aggression 1. Why does aggression happen? From time to time, people with dementia may become angry, aggressive or violent. Aggression can happen for a variety of reasons. It can be due to unmet needs, illness such as a urinary tract infection, medication combinations or side effects, or something that is happening around the person with dementia. In addition, people with dementia may have difficulty understanding others, judging social situations, controlling their feelings or expressing themselves like they did before. They may also have personality or mental health changes that contribute to aggressive behaviours. At times, aggression is displayed towards people known to the person living with dementia. At other times it can be with strangers. Aggression is often one of the most difficult things to cope with for carers. Le ss on 3 . A gg re ss io n iS u p p o rt In te rv e n ti o n M an u al MODULE 5 188 Let’s look at your situation Check your answer, yes or no. Does the person you care for ever talk to you or other people in an aggressive way? „ Yes „ No Does the person you care for ever act aggressively towards you or other people? „ Yes „ No 1. Activity WARNING! If the person is suddenly behaving aggressively, there may be an underlying cause (for example a urinary infection) that should be investigated by a doctor. Le ss on 3 . A gg re ss io n iS u p p o rt In te rv e n ti o n M an u al MODULE 5 189 Do you remember the cycle of behaviour change? Just like we mentioned in Lesson 1. Introduction to behaviour changes, it is important to break down the cycle of stressful responses into three parts in order to help you deal with them. What happens before? Carer’s response to the behaviour Behaviour Here they are Le ss on 3 . A gg re ss io n iS u p p o rt In te rv e n ti o n M an u al MODULE 5 190 Neil wants to assist his father-in-law, Amit, in taking a bath because Amit needs to see a doctor. Neil says: “it is time for your bath”. Amit refuses. Neil has little time and tugs on his father-in-law’s arm. He says: “you need to bathe because you’re going to see the doctor.” Amit pulls his arm back and resists. He is much stronger than Neil. Neil tugs it again and says angrily: “you must take a bath because you are going to the doctor and need to be clean”. Amit gets very angry, shouts and even tries to shove Neil, who becomes upset. Amit angrily refuses to take a bath Can you break down the cycle of behaviour change in this example into its three parts? Please fill in the boxes below. What comes before the behaviour? What is the stressful behaviour? What is Neil’s response? 1. Check your understanding Understanding aggressive behaviour. Let’s see how the cycle works with a different example. Le ss on 3 . A gg re ss io n iS u p p o rt In te rv e n ti o n M an u al MODULE 5 191 „ Force his father-in-law to start bathing anyway. „ Maintain the dignity and privacy of his father-in-law. He could keep him in a robe or towel until he actually takes a bath. „ Play soothing music that Amit likes. „ Walk away and come back later. „ Explain logically why he should bathe. „ Put himself in Amit’s shoes and try to understand why Amit might not want to take a bath. 2. Check your understanding Responding to aggressive behaviour. 2. How to respond to aggressive behaviour? There are many ways to respond to aggressive behaviour. Some are good, others are not. In the exercise below you can learn more. How could Neil react differently? Please indicate what you think are good responses. Neil could: Le ss on 3 . A gg re ss io n iS u p p o rt In te rv e n ti o n M an u al MODULE 5 192 „ Make sure that there is enough time so that it is not so stressful. Rather than trying to bathe Amit right before the doctor’s appointment, when things are rushed, Neil might try to assist with bathing the day before. „ Before the next bath time, identify the best time of day for Amit to take a bath and find out whether he prefers a bath or a shower. „ When bathing Amit, keep a towel over his shoulders to help him maintain dignity and to keep him warm. „ Ask for someone else to help with Amit’s bath time. „ Help Amit with a bed bath by using warm, wet towels with soap without taking Amit to the bath. „ Say in an irritated voice: “I have already answered that, please stop bothering me.” “You must take a bath!” 3. Check your understanding (continued) Responding to aggressive behaviour. Le ss on 3 . A gg re ss io n iS u p p o rt In te rv e n ti o n M an u al MODULE 5 193 What could Neil do if his approach does not work the first time? Check all that apply. „ Neil could try several approaches until he finds one that works. „ Neil could get suggestions from others. 4. Check your understanding Ongoing aggressive behaviour. 3. How to deal with ongoing aggression? Sometimes your first approach may not work. Don't get discouraged, different responses may work at different times. Take a deep breath and think about the most positive ways to respond that will be the least distressing to you and the person you care for. Remind yourself that aggression can be a part of the dementia, or a reaction to the disease. Reminder Different responses may work at different times. Le ss on 3 . A gg re ss io n iS u p p o rt In te rv e n ti o n M an u al MODULE 5 194 Let’s look at your own situation It is important to apply what you have just learned to your own situation. Has the person that you care for ever been aggressive towards you? If so, describe the last time that this happened in the spaces below. 2. Activity What happened before the person you care for became aggressive? What could you do to change your response to this behaviour? What could change in the environment to make it more calming? Le ss on 3 . A gg re ss io n iS u p p o rt In te rv e n ti o n M an u al MODULE 5 195 z Aggression like shouting, shoving or pushing can happen to carers of people with dementia. z Aggression can be very upsetting for the person living with dementia as well as the carer. z Try to change the environment to make it more calming. z Try to maintain the dignity of the person living with dementia; do not force them to engage in activities that they do not wish to do. z If one approach does not work, try another one. z Realize that there may be worse, but also better moments. z Remind yourself that aggression can be a part of the dementia, or a reaction to the disease. z If the person is suddenly behaving aggressively, there may be an underlying cause (for example a urinary infection) that should be investigated by a doctor. z Take a deep breath and think about the most positive ways to respond that will be the least distressing to you and the person you care for. z If the person you care for continues to show aggression, there are many resources available on the internet. For example, look at the website of the Alzheimer Association in your country (www.alz.co.uk/associations). You finished this lesson, well done! Let’s review what you have learned Le ss on 3 . A gg re ss io n iS u p p o rt In te rv e n ti o n M an u al MODULE 5 196 iS u p p o rt In te rv e n ti o n M an u al Relaxation exercise - Neck movements ANSWERS - DEALING WITH BEHAVIOUR CHANGES Lesson 3. Aggression AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 3 Amit angrily refuses to take a bath Can you break down the cycle of behaviour change in this example into its three parts? Please fill in the boxes below. What comes before the behaviour? Neil tugs Amit’s arm and says angrily: “you must take a bath because you are going to the doctor and need to be clean”. Amit gets very upset and shouts and even tries to shove Neil. Neil becomes upset. What is the stressful behaviour? What is Neil’s response? 1. Check your understanding Understanding aggressive behaviour. iS u p p o rt In te rv e n ti o n M an u al MODULE 5 197 iS u p p o rt In te rv e n ti o n M an u al Relaxation exercise - Neck movements AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 3 8 Force his father-in-law to start bathing anyway. This is not helpful, because it does not change the situation and may only make it worse. 9 Maintain the dignity and privacy of his father-in-law. He could keep him in a robe or towel until he actually takes a bath. Correct. Maintaining dignity and privacy is always a good idea when caring for someone with dementia. By doing this Neil makes sure that the person living with dementia is comfortable. 9 Play soothing music that Amit likes. Yes. Though it may take extra time to arrange the music, this option may help sooth both Neil and Amit. This may create relaxation and less negative responses from both of them. 9 Walk away and come back later. This is a good response. It gives Neil time to calm down, take a deep breath and come up with a new strategy. It also gives Amit time to forget about the negative encounter and he may be in a better mood if approached differently later. 8 Explain logically why he should bathe. This answer is not so good. It does not take into account that Amit may not be able to understand because of his dementia. 2. Check your understanding Responding to aggressive behaviour. How could Neil react differently? Neil could: iS u p p o rt In te rv e n ti o n M an u al MODULE 5 198 iS u p p o rt In te rv e n ti o n M an u al Relaxation exercise - Neck movements AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 3 9 Make sure that there is enough time so that it is not so stressful. Rather than trying to bathe Amit right before the doctor’s appointment, when things are rushed, Neil might try to assist with bathing the day before. Though taking more time may not always be feasible, this option is good. It may reduce tension for Neil and Amit. 9 Before the next bath time, identify the best time of day for Amit to take a bath and find out whether he prefers a bath or shower. This answer is good. Keeping people with dementia to their regular routines shows attention to their preferences. 9 When bathing Amit, keep a towel over his shoulders to help him maintain dignity and to help keep him warm. This answer is good. Amit could be embarrassed to be naked in front of his son-in-law or the temperature of the water or the room could be too cold. It’s important to look for ways to make the situation more pleasant. 9 ✓Neil could ask for someone else to help with Amit’s bath time. This answer is good. Sometimes the person living with dementia is more comfortable with one family member helping them bathe than another. Sometimes even a stranger might find it easier as the person living with dementia might be less embarrassed than with a family member. 2. Check your understanding (continued) Responding to aggressive behaviour. iS u p p o rt In te rv e n ti o n M an u al MODULE 5 199 iS u p p o rt In te rv e n ti o n M an u al Relaxation exercise - Neck movements AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 3 9 Neil could help Amit with a bed bath by using warm, wet towels with soap without taking Amit to the bath. This answer is good. If the person living with dementia is afraid of the bath, or running water, this option will help relieve their distress and can sometimes be used instead of baths. There are also products such as dry shampoo and cleaning products used for young children that might help. 8 Say in an irritated voice: “I have already answered that, please stop bothering me.” “You must take a bath!” This is not helpful, because it does not change the situation. 2. Check your understanding (continued) Responding to aggressive behaviour. iS u p p o rt In te rv e n ti o n M an u al MODULE 5 200 iS u p p o rt In te rv e n ti o n M an u al Relaxation exercise - Neck movements AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 3 What could Neil do if his approach does not work the first time? 9 Neil could try several approaches until he finds one that works. 9 Neil could get suggestions from others. There may be other approaches that you could try. This can be information from people that you know or that is available on the Internet. See for example: http://www.alz.co.uk/ 3. Check your understanding Ongoing aggressive behaviour. iS u p p o rt In te rv e n ti o n M an u al MODULE 5 201 Why is this lesson important? Dementia may affect a person’s mood and interest in daily activities, people and events. How will this lesson help me? This lesson helps you to understand the possible causes of depression and anxiety, while improving your skills to prevent or reduce mood problems. What will I learn? 1. What are depression, anxiety and apathy? 2. How to respond when a person living with dementia is feeling depressed or anxious? 3. How to respond when a person living with dementia loses interest in daily activities? Lesson 4. Depression, anxiety and apathy 1. What are depression, anxiety and apathy? Depression, anxiety and apathy are common among people with dementia. Dementia may affect a person’s mood and interest in daily activities, people and events. This may be due to changes in the brain, but also to the emotional reaction of what is happening to them. People with dementia may feel sad, worried, frightened, frustrated or angry, may cry and be unusually emotional, agitated or restless. They may also be withdrawn, unhappy and react slowly. These are all behaviours of depression and apathy. Anxiety can lead to behaviours similar to depression. People with dementia can be worried about being left alone, who is handling their money, or where lost items have gone to and become anxious. Le ss on 4 . D ep re ss io n, an xie ty an d ap at hy iS u p p o rt In te rv e n ti o n M an u al MODULE 5 202 2. How to respond when a person living with dementia is feeling depressed or anxious? Let’s look at an example Juan has dementia and lives with his sister, Isabel. On several occasions Isabel has found Juan sitting in his favourite chair looking very sad, hunched over, and sometimes crying. Isabel tries to cheer him up. Unfortunately, everything that she tries does not seem to work. How should Isabel handle this situation? Below are some things that Isabel may do or say. Please select all responses that you think might work. „ Walk over to Juan and say in a calm, reassuring tone, “I have some ideas about how you can feel better, let’s talk. „ Say: “Juan, what’s the matter with you? I’m tired of seeing you like this. Just get up and do something.” „ Say: “men don’t cry and get sad, we used to have so much fun together.” „ Go over and touch Juan on the arm or shoulder. “I know that you feel bad, I do too. What we’re going through is really hard.” „ Sit with Juan and suggest that they do a pleasant activity together. „ Sigh and walk away, thinking that there is nothing that she can do. 1. Check your understanding Responding to a person with dementia who is feeling depressed. Le ss on 4 . D ep re ss io n, an xie ty an d ap at hy iS u p p o rt In te rv e n ti o n M an u al MODULE 5 203 Here is another example Emma has dementia and lives with her family. Benjamin is her grandson. Because Benjamin’s parents work and he is in school, he is the main carer in the afternoons. Benjamin is watching a TV show while his grandmother is sewing. The TV show has loud music and vulgar language. Suddenly, his grandmother jumps up and paces up and down the room, wringing her hands. She is muttering to herself “I need to go home”, “I need to go home”. How do you think that Benjamin should respond to this situation? Below are some things that Benjamin may do or say. Please select all the correct responses. „ Think “Grandmother cannot help the way that she behaves.” „ Say “Grandmother! Sit down, you’re making it impossible for me to watch my show.” „ Give his grandmother a smile and reassure her that she is safe. „ Ask his grandmother to help him with something. „ Turn up the volume to drown out the muttering and turn away from her. „ Look for his headphones and encourage his grandmother to go back to her sewing so that she is busy. 2. Check your understanding Responding to a person with dementia who is feeling anxious. Le ss on 4 . D ep re ss io n, an xie ty an d ap at hy iS u p p o rt In te rv e n ti o n M an u al MODULE 5 204 „ Sofia walks over to George and says “I’m sick and tired of this laziness, get up and let’s go". „ Sofia goes over to George and strokes his hair. She says that she loves him and that she would like to do something together. George turns to her and smiles weakly. „ Sofia says: “you never do anything I want anymore, it is impossible to keep on living with you. I don’t know what I’m going to do.” „ Sofia says: “let’s go for a walk together, I know how much you would enjoy getting out of the house for a little while.” „ Sofia closes the door and doesn’t try to engage with George anymore. „ Sofia thinks back to what George used to really like doing and thinks how she could help, for example by reading the newspaper to him, cooking his favourite dish or visiting a shop to let him straighten the shelves with the shopkeeper’s permission. 3. Check your understanding Responding to a person with dementia who loses interest in daily activities. 3. How to respond when a person living with dementia loses interest in daily activities? Let’s look at an example George has dementia and lives with his wife Sofia. George used to be a shopkeeper and was very active in the community. Recently, George has been sitting in a chair near a large window and staring blankly outside, this type of behaviour can also be known as apathy where the person with dementia has trouble becoming interested in doing something. Sofia has become very concerned, because this is not like him. He seems removed and distant from her. One day, she walks in and says “George, shall we go out for a walk?” He does not respond. How do you think Sofia should react? Please check all the responses that you think are appropriate. Le ss on 4 . D ep re ss io n, an xie ty an d ap at hy iS u p p o rt In te rv e n ti o n M an u al MODULE 5 205 Let’s look at your own situation It is important to apply what you have learned to your own situation. The spaces below are for you, like a diary. Does the person living with dementia ever show changes in mood or interest, or any signs of depression or anxiety? If so, what do these changes look like? What could you do to prevent this? How could you respond in a different way? 1. Activity Le ss on 4 . D ep re ss io n, an xie ty an d ap at hy iS u p p o rt In te rv e n ti o n M an u al MODULE 5 206 z Signs of depression and anxiety are common in people with dementia. z Changes in mood can be very upsetting to the person living with dementia and the carer. z People with mood problems need extra love and support. z It is important to identify ways to stop or reduce mood changes, by comforting and getting the person interested in things that they like to do. z If one approach doesn’t work, try another one. z In case of mood changes, remind yourself that they may be part of the disease or a reaction to the disease. z Take a deep breath and think about the best ways to respond that will be the least distressing to you and the person you care for in case they have mood problems or experience a loss of interest. z If the symptoms persist for a longer period, the person you care for is in danger, or you feel otherwise unable to manage, please seek help from your health care professional. Let’s review what you have learned It is important to recognize when things get serious. If the person you care for has serious and constant mood changes or you think that they are in danger of harming themselves, it is important to seek medical advice right away. Remember You finished this lesson, well done! Le ss on 4 . D ep re ss io n, an xie ty an d ap at hy iS u p p o rt In te rv e n ti o n M an u al MODULE 5 207 iS u p p o rt In te rv e n ti o n M an u al ANSWERS - DEALING WITH BEHAVIOUR CHANGES Lesson 4. Depression, anxiety and apathy AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 4 9 Walk over to Juan and say in a calm, reassuring tone, “I have some ideas for how you can feel better, let’s talk. This is a good response because Juan needs more support due to the changes in his mood. 8 Say: “Juan, what’s the matter with you? I’m tired of seeing you like this. Just get up and do something.” This response is not helpful because Juan cannot help that he is feeling sad. 8 Say: “men don’t cry and get sad, we used to have so much fun together.” This response is not good because it might embarrass Juan and may make him feel even more sad. Below are some things that Isabel may do or say. Please select all responses that you think might work. 9 Go over and touch Juan on the arm or shoulder. “I know that you feel bad, I do too. What we’re going through is really hard.” This is a good response because people who are feeling sad need extra love, support and understanding. 9 Sit with Juan and suggest that they do a pleasant activity together. This is a good response because it may distract Juan and make him feel better. 8 Sigh and walk away, thinking thinking that there is nothing that she can do. This is not helpful because Isabel is further isolating Juan. 1. Check your understanding Responding to a person with dementia who is feeling depressed. iS u p p o rt In te rv e n ti o n M an u al MODULE 5 208 iS u p p o rt In te rv e n ti o n M an u al AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 4 9 Think “Grandmother cannot help the way that she behaves.” This is a good response because it recognizes that Emma’s reaction might be due to changes in her brain. 8 Say “Grandmother! Sit down, you’re making it impossible for me to watch my show.” This response is not good because a direct order like this may make Emma feel even more anxious. 9 Give his grandmother a smile and reassure her that she is safe. This is a good response because people who are feeling anxious need extra love and support. Below are some things that Benjamin may do or say. Please select all the correct responses. 9 Ask his grandmother to help him with something. This might help because it might distract Emma and change her reaction. 8 Turn up the volume to drown out the muttering and turn away from her. This is not a good response. It will only increase his grandmother’s anxiety. 9 Look for his headphones and encourage his grandmother to go back to her sewing so that she is busy. This is a good response. Benjamin can still watch TV with headphones so it is not too loud for Emma, and Emma might be able to engage in her sewing again. 2. Check your understanding Responding to a person with dementia who is feeling anxious. iS u p p o rt In te rv e n ti o n M an u al MODULE 5 209 iS u p p o rt In te rv e n ti o n M an u al AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 4 8 Sofia walks over to George and says “I’m sick and tired of this laziness, get up and let’s go”. This response is not good because a direct order may make George more withdrawn. It doesn’t show any understanding of his dementia. 9 Sofia goes over to George and strokes his hair. She says that she loves him and that she would like to do something together. George turns to her and smiles weakly. This is a good response because it recognizes that the problem is related to his dementia. She is not taking it personally and is expressing extra love and support. 9 Sofia says: “you never do anything I want anymore, it is impossible to keep on living with you. I don’t know what I’m going to do.” This is not a good response because it shows that she is giving up on George. He may become even more withdrawn from her. How do you think Sofia should react? Please check all the responses that you think are appropriate. 9 Sofia says: “let’s go for a walk together, I know how much you would enjoy getting out of the house for a little while.” This is a good response because it is reassuring and may comfort George. 8 Sofia closes the door and doesn’t try to engage with George anymore. This is not the right response because it may worsen George's loss of interest. 9 Sofia thinks back to what George used to really like doing and thinks how she could help, for example by reading the newspaper to him, cooking his favourite dish or visiting a shop to let him straighten the shelves with the shopkeeper’s permission. This is a good response because it shows Sofia cares about George and wants to help him engage in an activity that he would enjoy. 3. Check your understanding Responding to a person with dementia who loses interest in daily activities. iS u p p o rt In te rv e n ti o n M an u al MODULE 5 210 Why is this lesson important? People with dementia may have difficulty sleeping which can impact the carer’s sleep as well. How will this lesson help me? This lesson will provide examples and practice to promote good sleep. What will I learn? 1. How to deal with sleeping problems in a person with dementia? 2. How to deal with a person with dementia who wakes up in the middle of the night? Lesson 5. Difficulty sleeping 1. How to deal with sleeping problems in a person with dementia? Difficulty sleeping can be a problem for people with dementia and their families. People with dementia can have difficulty falling asleep, may wake up in the middle of the night, or wake up too early in the morning. Carers may have their sleep disrupted as a result, which can make it harder to provide care. In this lesson, you will practice how to promote good sleep for the person living with dementia. Le ss on 5 . D iffi cu lty s le ep in g iS u p p o rt In te rv e n ti o n M an u al MODULE 5 211 What is the main sleeping problems of the person that you care for? Please select all that apply. „ Difficulty falling asleep „ Waking up in the middle of the night „ Combination of the above „ Other (please specify): „ No problems at this point 1. Activity Le ss on 5 . D iffi cu lty s le ep in g iS u p p o rt In te rv e n ti o n M an u al MODULE 5 212 Can you break down the cycle of behaviour change in this example into its three parts? What comes before the behaviour? What is the stressful behaviour? What does this mean for Grace? 1. Check your understanding Understanding sleeping difficulties. Difficulty falling asleep Rosie is an older woman with dementia. She lives with her family. She sleeps near her granddaughter, Grace. Usually, the family has dinner around 6pm. The family is used to doing some activities together afterwards. Rosie does not always like these activities so the family often wants her to go to bed as early as 8pm. Granddaughter Grace notices that Rosie has trouble falling asleep. Rosie continues to open and shut her dresser drawers noisily during the evening. When Grace goes to bed, the noise Rosie is making keeps Grace awake. Le ss on 5 . D iffi cu lty s le ep in g iS u p p o rt In te rv e n ti o n M an u al MODULE 5 213 Here are some examples of what Grace could do. Please select all that you think may be appropriate to help Rosie fall asleep: „ Give her a pill to sleep. „ Try and ensure that Rosie does not drink coffee or too much fluid a few hours before going to bed. „ Make lunch the bigger meal of the day. „ Limit daytime naps to 15 to 30 minutes. „ Play soothing music before bedtime to help Rosie sleep. „ Create a bedtime routine, like lowering the lights, washing face and teeth, and changing into pajamas. „ Keep in mind that some people may require less sleep. Generally, 6 to 8 hours sleep from 20:00 means night waking between 2:00 to 4:00 in the morning. 2. Check your understanding Responding to sleeping difficulties. So far, we have covered some basic steps to help the person with dementia fall asleep. What if the problems are a bit more complex? Le ss on 5 . D iffi cu lty s le ep in g iS u p p o rt In te rv e n ti o n M an u al MODULE 5 214 What can Geeta do to keep Vani from wandering at 3:00 in the morning? Please select all responses that you feel are appropriate. „ Try to understand what will help Vani sleep. Some people prefer to keep the room dark with no television or as little noise as possible while others prefer a night light, soft music or a television playing. „ Give Vani a favourite object to relax (e.g. blanket or stuffed animal). „ Schedule an appointment with the doctor to find out if there is a medical reason for her trouble sleeping (e.g. urinary tract infection, pain, medication causing hallucinations). „ Develop an activity schedule to keep Vani awake and busy during the day. „ Encourage physical exercise during the day (e.g. walking, stretching). „ Tell Vani that you won’t take care of her anymore if you are continuously woken up at night. „ Ask if she has to go to the bathroom or is hungry or thirsty. If she says “yes”, then just assist her to meet these needs. „ Physically take hold of her and put her back in bed. „ Ask for help from a family member, friend or a paid professional. 3. Check your understanding Dealing with waking in the middle of the night (1). 2. How to deal with a person with dementia who wakes up in the middle of the night? Let’s look at another example It is 3:00 in the morning, Vani wakes up and starts walking around the house. Her daughter-in-law, Geeta, is sleeping. Vani paces throughout the house and then goes to Geeta and wakes her up. Vani asks: “Where are we? I want to go home”. Geeta is upset, because she has a long day at work tomorrow. Geeta says: “mother, you need to go back to bed, it is 3:00 in the morning.” Vani says: “I am not sleepy.” Geeta yells: “I can’t take this anymore.” Le ss on 5 . D iffi cu lty s le ep in g iS u p p o rt In te rv e n ti o n M an u al MODULE 5 215 Which of the responses below would you choose if the person you care for experiences sleeping problems? Please select all responses that you feel are appropriate. „ Remind yourself to stay calm and focus on getting the person living with dementia to sleep. This way, you will use your energy to solve the sleeping problem, rather than reacting emotionally. „ Gently remind the person that it is dark outside and it is time to sleep. If needed try to relax the person, for example by playing soothing music. „ Read aloud to the person you care for. Choose something that you know has a calming effect, perhaps a poem or story. Sing a song or chant together. Another option is to pray or meditate for 15 minutes together. „ Comfort the person living with dementia. Give them a stuffed animal and hug or hold them until they fall asleep. 4. Check your understanding Dealing with waking in the middle of the night (2). In the previous exercise, you identified several ways of dealing with waking in the middle of the night. Now let's look at your own situation and some additional responses. Sleeping problems may be related to depression. If the person you care for has difficulty sleeping, you might want to read Lesson 4 Depression, anxiety or apathy. Please also seek advice from a doctor. Tip Le ss on 5 . D iffi cu lty s le ep in g iS u p p o rt In te rv e n ti o n M an u al MODULE 5 216 Let’s look at your own situation In an earlier Activity on page 46, you identified the main sleeping problem of the person you care for. It is important to apply what you have learned to your own situation. The space below is for you, like a diary. What could you do to help tackle the sleeping problems? What could you do to improve your reaction to sleeping problems? 2. Activity Le ss on 5 . D iffi cu lty s le ep in g iS u p p o rt In te rv e n ti o n M an u al MODULE 5 217 z Difficulty sleeping is common in people with dementia. z Sleeping problems can be very stressful to deal with. z If the person you care for is having difficulty sleeping, try to make them more comfortable. z Try to identify circumstances that may increase difficulty sleeping and change or address them. z When one approach doesn’t work, try another one. z Realize that there will be good and bad days. z Remind yourself that difficulty sleeping is part of the disease. z Take a deep breath and think about the best ways to respond that will be the least distressing for you and the person you care for in case of sleeping problems. z Ask for help. It is hard to provide good care on limited sleep. Let’s review what you have learned You finished this lesson, well done! Le ss on 5 . D iffi cu lty s le ep in g iS u p p o rt In te rv e n ti o n M an u al MODULE 5 218 iS u p p o rt In te rv e n ti o n M an u al Can you break down the cycle of behaviour change in this example into its three parts? What comes before the behaviour? Rosie is sent to bed as early as 20:00, so that the family can do activities together that Rosie does not like. Rosie has trouble falling asleep and continues to open and shut her dresser drawers noisily during the evening. This keeps Grace awake. What is the stressful behaviour? What does this mean for Grace? 1. Check your understanding Understanding sleeping difficulties. ANSWERS - DEALING WITH BEHAVIOUR CHANGES Lesson 5. Difficulty sleeping AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 5 iS u p p o rt In te rv e n ti o n M an u al MODULE 5 219 iS u p p o rt In te rv e n ti o n M an u al 9 ✓Go for a walk with Rosie and add more physical activity during the day. This is a good idea! Physical exercise during the day may help sleep at night. 8 Give her a pill to sleep. This is not a good idea. It can make someone with dementia even more confused or agitated and sleeping pills may become addictive. 9 Try to ensure that Rosie does not drink coffee or too much fluid a few hours before going to bed. This is a good response. Coffee, tea, or too much liquid can keep people awake, and cause frequent urination. 9 Make lunch the bigger meal of the day. This is helpful. A light dinner makes it easier to sleep. Rosie has trouble falling asleep 9 Limit daytime naps to 15 to 30 minutes. This might be a good idea. It addresses the need for sleep during the day, but it does not prevent Rosie from falling asleep later on. 9 Play soothing music before bedtime to help Rosie sleep. Good idea. Find relaxing activities before bed such as music, or reading to Rosie. Too much activity before bed can cause a person to be stimulated and stay awake. 9 Create a bedtime routine, like lowering the lights, washing face and teeth, and changing into pajamas. This is a good response because a routine will relax the person living with dementia. 9 Keep in mind that some people may require less sleep. Generally, 6 to 8 hours sleep from 20:00 means night waking between 2:00 to 4:00 in the morning. This is a good response. Select a normal sleeping time as much as possible. 2. Check your understanding Responding to sleeping difficulties. AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 5 iS u p p o rt In te rv e n ti o n M an u al MODULE 5 220 iS u p p o rt In te rv e n ti o n M an u al 9 Try to understand what will help Vani sleep. Some people prefer to keep the room dark with no television or as little noise as possible while others prefer a night light, soft music or a television playing. This answer is a good one. Each person is different and you may need to try several possible solutions before finding one that works. 9 Give Vani a favourite object to relax (e.g. blanket or stuffed animal). This response is a good one. It may help Vani feel relaxed and secure. What can Geeta do to keep Vani from wandering at 3:00 in the morning? 9 Schedule an appointment with the doctor to find out if there is a medical reason for her trouble sleeping (e.g. urinary tract infection, pain, medication causing hallucinations). While it is not necessary to seek medical attention every time that a person living with dementia can’t sleep, seek advice if it worries or upsets you or the person living with dementia. 9 Develop an activity schedule to keep Vani awake and busy during the day. This is a good idea. It may improve sleep at night. 3. Check your understanding Dealing with waking in the middle of the night (1). AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 5 iS u p p o rt In te rv e n ti o n M an u al MODULE 5 221 iS u p p o rt In te rv e n ti o n M an u al 9 Encourage physical exercise during the day (e.g. walking, stretching). This may be helpful to improve sleep at night. 8 Tell Vani that you won’t take care of her anymore if you are continuously woken up at night. This is not a good response. Keep in mind that dementia is a disease and someone with dementia will be dependent on the care that others provide. 9 Ask if Vani has to go to the bathroom or is hungry or thirsty. If she says “yes”, then just assist her to meet these needs. This is helpful. Such a break might help the person go back to sleep. 8 Physically take hold of Vani and put her back in bed. Never do this. Although it may be very difficult to deal with sleeping problems, respect the dignity of someone with dementia. Moreover, they may become agitated or angry. It definitely will not solve the sleeping problems. 9 Ask for help from a family member, friend or a paid professional. This might be helpful. Eventually, the lack of sleep can affect any family’s ability to provide care. Someone else can assist by giving the family member a night or a weekend off. AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 5 3. Check your understanding (continued) Dealing with waking in the middle of the night (1). iS u p p o rt In te rv e n ti o n M an u al MODULE 5 222 iS u p p o rt In te rv e n ti o n M an u al 9 Remind yourself to stay calm and focus on getting the person living with dementia to sleep. This way, you will use your energy to solve the sleeping problem, rather than reacting emotionally. Correct! 9 Gently remind the person that it is dark outside and it is time to sleep. If needed try to relax the person, for example by playing soothing music. Great idea! Which of the responses below would you choose if the person you care for experiences sleeping problems? 9 Read aloud to the person you care for. Choose something that you know has a calming effect, perhaps a poem or story. Sing a song or chant together. Another option is to pray or meditate for 15 minutes together. Good response! 9 Comfort the person living with dementia. Give them a stuffed animal and hug or hold them until they fall asleep. Great idea! 4. Check your understanding Dealing with waking in the middle of the night (2). AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 5 iS u p p o rt In te rv e n ti o n M an u al MODULE 5 223 Why is this lesson important? Unreal thoughts and seeing things that aren’t there (delusions and hallucinations) can be very upsetting to the person living with dementia and the carer. How will this lesson help me? This lesson will help you identify ways to stop or reduce delusions and hallucinations and how you might change the way that you respond to them. What will I learn? 1. Why do people with dementia have unreal thoughts and see or hear things that aren’t there? 2. How to stop or reduce delusions and hallucinations? Lesson 6. Delusions and hallucinations 1. Why do people with dementia have unreal thoughts and see or hear things that aren’t there? People with dementia may not understand the world around them because of changes in their brain. These misunderstandings are called delusions (unreal thoughts) and hallucinations (seeing or hearing things that are not there). A delusion is a fixed false belief. For example, the person may hold the false belief of being under threat or harm from the carer. To the person living with dementia the error in thinking is very real, causes fear and may result in distressing self- protective behaviours. If the person is experiencing a hallucination, they might see or hear things that are not there, for example, people talking in the room. People with dementia with these ideas need a lot of understanding and support from the person taking care of them. Le ss on 6 . D elu sio ns an d ha llu cin at io ns iS u p p o rt In te rv e n ti o n M an u al MODULE 5 224 Has the person you care for ever had any unreal thoughts or seen or heard things that were not there? You can describe them in the space below, like in a diary. 1. Activity Unreal thoughts or seeing/hearing things that are not there are common problems for some people with dementia. In this lesson, you will learn how to deal with them. Remember Le ss on 6 . D elu sio ns an d ha llu cin at io ns iS u p p o rt In te rv e n ti o n M an u al MODULE 5 225 What would you recommend Martin do? Please check all correct answers. „ Soothe her in a calm voice. „ Lead her away from the woman in the park. „ Directly tell the truth, harshly, to set the record straight. „ Argue with Betty that the young woman is not her sister. „ Say that the young woman in the park is someone who looks like her, but it is not her. „ Involve the woman in the park in any way. „ Try to ‘convince’ Betty of the truth. Say “Yes you are right, it is Susan”. „ Say “When we get home, you can look at pictures of Susan and remember her”. 1. Check your understanding Mistaking a person for someone else. 2. How to stop or reduce delusions and hallucinations? Let’s look at the following example Martin’s wife Betty is living with dementia. One day, Martin and Betty are out for a walk. They see a woman in the distance. Betty starts calling loudly “Susan, Susan, I’m over here”. Then she starts running towards a woman unknown to Martin; a young lady who is probably about 20 years old. Betty mistakenly believes that the young woman in the park is her sister who died in a car accident over 30 years ago. The young woman ignores her. Betty becomes very upset. Le ss on 6 . D elu sio ns an d ha llu cin at io ns iS u p p o rt In te rv e n ti o n M an u al MODULE 5 226 „ Soothe her father, by saying in a calm voice “You are safe, I am with you”. „ Check if there is anything in the environment that could be causing Larry's hallucination, such as shadows in the room from the sunlight. Make changes as necessary. „ Lead him away from the room. „ Say that it is simply not true, that there are no other people in the room. What would you recommend Mercedes do? Please check all correct answers. 2. Check your understanding Seeing people that are not there. Now let’s look at another example Mercedes’ father Larry is living with dementia. One day, Larry is a bit restless. Suddenly, he starts to look very frightened while staring at a corner in the room. He calls out to his daughter and says, “Do you see them talking?” He screams, “What are you doing there?” Mercedes is so overwhelmed that she feels like running away. She thinks to herself “Dad’s illness is much worse than I thought it was.” Check with the doctor regarding medication side effects that the person living with dementia is using. These may contribute to the problem. Tip Le ss on 6 . D elu sio ns an d ha llu cin at io ns iS u p p o rt In te rv e n ti o n M an u al MODULE 5 227 Let’s look at your own situation It is important to apply what you have learned to your own situation. Which one would you try first? Unreal or unusual thoughts do not happen all the time. What would you do if the person you care for experiences them? Try to describe different appropriate responses in the space below. 2. Activity Sometimes people with dementia have pleasant hallucinations, like seeing beautiful colours or children who are not there. If these visions are not causing the person distress then try to enjoy them together. Remember Le ss on 6 . D elu sio ns an d ha llu cin at io ns iS u p p o rt In te rv e n ti o n M an u al MODULE 5 228 z Unreal thoughts or seeing/hearing things that are not there (delusions and hallucinations) are common in people with dementia. z They can be very upsetting to the person living with dementia and the carer. z Often, people with these visions and unreal thoughts need a lot of reassurance. z It is important to identify ways to reduce them, not by arguing with the person you care for, but by comforting and distracting them. z Check the environment to see if there is a cause for the delusion or hallucination. z If one approach doesn’t work, try another one. z Remind yourself that unreal thoughts or visions are part of the disease. z Take a deep breath and think about the best ways to respond that will be the least distressing to you and the person you care for if they are experiencing unreal thoughts or visions. You finished this lesson, well done! Let’s review what you have learned Le ss on 6 . D elu sio ns an d ha llu cin at io ns iS u p p o rt In te rv e n ti o n M an u al MODULE 5 229 iS u p p o rt In te rv e n ti o n M an u al ANSWERS - DEALING WITH BEHAVIOUR CHANGES Lesson 6. Delusions and hallucinations 9 ✓Soothe her in a calm voice. This is a good response because people with delusions and hallucinations may feel frightened and insecure. 9 ✓Lead her away from the woman in the park. This is a good response because it will distract her from the young woman in the park. ✓ 8 Directly tell the truth, harshly, to set the record straight. This is not a good response as it may make Betty even more upset. ✓✓ 8 Argue with Betty that the young woman is not her sister. This is not a good response as it may make Betty even more upset. 9 Say that the young woman in the park is someone who looks like her, but it is not her. This is a good response because it maintains a positive social environment. 8 Involve the woman in the park in any way. This is not helpful because it may make the situation more complicated. 8 Try to ‘convince’ Betty of the truth. This is not a good response as Betty may not understand. 8 Say “Yes you are right, it is Susan”. This is not correct because it is not the truth. 9 Say “When we get home, you can look at pictures of Susan and remember her”. This is a good response because Martin addresses the importance of her sister, without arguing that the young woman Betty saw in the park was not her sister. 1. Check your understanding Mistaking a person for someone else. AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 6 iS u p p o rt In te rv e n ti o n M an u al MODULE 5 230 iS u p p o rt In te rv e n ti o n M an u al ANSWERS - DEALING WITH BEHAVIOUR CHANGES Lesson 6. Delusions and hallucinations 2. Check your understanding Seeing people that are not there. AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 6 9 Soothe him, by saying in a calm voice “You are safe, I am with you”. This is a good response because people with hallucinations are often feeling frightened and insecure. 9 Check if there is anything in the environment that could be causing his hallucinations, such as shadows in the room from the sunlight. Make changes as necessary. This is a good response because although a person’s brain may be misinterpreting the environment there could still be a reasonable cause for confusion. 9 Lead him away from the room. This is a good response because changing the environment may distract her father and end the hallucination. 8 Say that it is simply not true, that there are no other people in the room. This is not a good response because arguing about what one sees or hears will not help a person experiencing delusions or hallucinations to calm down. iS u p p o rt In te rv e n ti o n M an u al MODULE 5 231 Why is this lesson important? If a person living with dementia repeats things over and over it can be stressful for themselves and the carer. We will refer to this as a ‘repetitive behaviour’. How will this lesson help me? This lesson will help you understand why repetitive behaviours occur, and how to respond to, and reduce, them. What will I learn? 1. What is repetitive behaviour? 2. How to comfort a person living with dementia in case of repetitive behaviours? Lesson 7. Repetitive behaviour 1. What is repetitive behaviour? A person living with dementia may forget what they have said, heard or did from one moment to the next, leading to repeated questions and actions. Usually doing things over and over is not harmful to the person living with dementia, if the carer knows how to deal with it. If not, the person living with dementia can become anxious, aggressive or depressed and the carer can become stressed. As a result, carers may respond inappropriately, for example by screaming, which often makes the person with dementia feel guilty. Le ss on 7 . R ep et iti ve b eh av io ur iS u p p o rt In te rv e n ti o n M an u al MODULE 5 232 Let’s look at your own situation Does the person you care for ever do or say things over and over again? What behaviour(s) do they repeat? You can describe them in the space below, like a diary. 1. Activity Le ss on 7 . R ep et iti ve b eh av io ur iS u p p o rt In te rv e n ti o n M an u al MODULE 5 233 What would you recommend to John? Please select all correct responses. „ Say “What’s wrong with you? Can’t you remember? We just had lunch!” „ Stay calm and reassure his father that his wife will be home soon. „ Engage his father in an activity. „ Write down the answers to his questions, for example where his wife is and when she is expected to return. „ Walk away. „ Accept the repetitive questions. If it isn’t harmful, let it be. Find ways to adapt. „ Offer his father a snack or a drink. 1. Check your understanding Repeating questions. Let’s look at this example John is taking care of his father Joe, because his mother, the main carer, is out of the house for a few hours. All seems fine, although John notices that his father is rather tense because John’s mother is not there. John and Joe eat lunch together. Sometime after finishing lunch, Joe asks “When is lunch?” and, “What are we having for lunch?” John does not think much of it at first. Then, again, a few minutes later, Joe asks “When is lunch?”, “What are we having for lunch?”, and “Where is your mother?” Joe repeats these questions again and again. John is confused about why Joe is doing this and gets more and more worried about his father. John continues to answer the questions, but gets a bit upset and raises his voice. John responds, loudly and is annoyed, “I have already answered these questions, why do you keep asking?” 2. How to comfort a person living with dementia in case of repetitive behaviours? Le ss on 7 . R ep et iti ve b eh av io ur iS u p p o rt In te rv e n ti o n M an u al MODULE 5 234 Let’s look at your own situation It is important to apply what you have learned to your own situation. The spaces below are for you, like a diary. Now look back at the examples that you identified in the previous activity. Choose the repetitive behaviour that is the most stressful to the person that you care for, or to yourself, and list it below. What could you do to help reduce this behaviour? How could you change your response to this behaviour? 2. Activity Le ss on 7 . R ep et iti ve b eh av io ur iS u p p o rt In te rv e n ti o n M an u al MODULE 5 235 z Doing or saying things over and over again (repetitive behaviour) is common in people with dementia. z Repetition can be very stressful to deal with. z In case of repetition, try to focus on comforting the person you care for. z Try to identify what comes before the repetitive behaviour and what may increase it. Then try to change it. Try to identify how you respond and change that also. z Realize there may be worse, but also better moments. z Remind yourself that repetitive behaviours are part of the disease. z Take a deep breath and think about the best ways to respond that will be the least distressing to you and the person living with dementia if they do or say things over and over again. You finished this lesson, well done! Let’s review what you have learned Le ss on 7 . R ep et iti ve b eh av io ur iS u p p o rt In te rv e n ti o n M an u al MODULE 5 236 iS u p p o rt In te rv e n ti o n M an u al 9 Say “What’s wrong with you? Can’t you remember? We just had lunch!” This is not a good response because John is blaming his father for something that he can’t help. 9 Stay calm and reassure his father that his wife will be home soon. This is a good response as repetition might worsen due to Joe’s feelings of insecurity. He seems to feel insecure because his wife went out. By reassuring Joe that his wife will come back soon, the repetition may lessen or stop. 9 Engage his father in an activity. This can be a good response because it may distract his father and offer something else to see, hear or do. 9 Write down the answers to his questions, for example where his wife is and when she is expected to return. This might work well, may reassure Joe and stop him from asking again. 8 Walk away. This response is not so good because it will only upset his father more. 9 Accept the repetitive questions. If it isn’t harmful, let it be. Find ways to adapt. This can be a good response. Perhaps if it is just repetitive questioning, by remaining calm the behaviour may decrease. 9 Offer his father a snack or a drink. This might be a good response. Perhaps Joe is still hungry or thirsty. It may help to calm him and meet his need. 1. Check your understanding Repeating questions. ANSWERS - DEALING WITH BEHAVIOUR CHANGES Lesson 7. Repetitive behaviours AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 7 iS u p p o rt In te rv e n ti o n M an u al MODULE 5 237 Why is this lesson important? Concerns about walking and getting lost can cause distress. Carers like you may worry whether the person will get lost. How will this lesson help me? This lesson will help you understand the reasons for walking and what to do to reduce the chances of the person living with dementia getting lost. What will I learn? 1. Why is walking a concern? 2. Why a person with dementia might want to walk around? 3. How can I manage habits and reduce the chances that the person I care for gets lost? Lesson 8. Walking and getting lost 1. Why is walking a concern? People with dementia may have the habit of walking around the home or leaving the house and wanting to walk around the neighbourhood, this is also called wandering. This is very common. However, they may get lost. So, safety is a primary concern when people with dementia are out alone. It is important to prevent wandering. This lesson will teach you why people with dementia may have a desire to walk. You will also learn about the steps that you can take to help make this safer. It is important to find ways to help prevent people with dementia from getting lost or ending up in an unsafe situation. Le ss on 8 . W al ki ng an d ge tti ng lo st iS u p p o rt In te rv e n ti o n M an u al MODULE 5 238 Does the person you care for sometimes walk around or walk away? You can describe what happens in the space below, like in a diary. 1. Activity 2. Why a person with dementia might want to walk around? A person with dementia who wanders or walks away may be: z Wanting to exercise. z Continuing a lifelong habit of walking regularly. z Relieving boredom due to not being sufficiently stimulated. z Using up energy from sitting all day. z Relieving pain and discomfort from joint pain or stiffness. z Responding to stress or anxiety. z Feeling lost or uncertain about their surroundings. z Going out and forgetting where they were going. z Searching for someone or something in the past or present. z Seeking fulfilment and purpose such as the desire to go to work. z Getting confused about the time. Le ss on 8 . W al ki ng an d ge tti ng lo st iS u p p o rt In te rv e n ti o n M an u al MODULE 5 239 There are certain things that may help manage a person’s walking habits and prevent them from getting lost. For example, try to: 3. How can I manage habits and reduce the chances that the person I care for gets lost? z Make sure that the person carries some form of identification. z Make sure that your home is secure, that the person is safe in your home and cannot leave without you knowing. For example, camouflaging doors and door knobs may help, or using a bell or curtain that makes noise when someone uses the door. z Keep an up-to-date photograph in case the person you care for gets lost and you must ask for help from others. z After the person you care for is found, speak calmly, with acceptance and love, try to avoid blaming and showing anger. z Keep to the routines and activities of the person you care for. Identify the most likely times of the day that their walking may occur and plan activities such as a walk in the park together at that time. z Reassure the person you care for if they feel lost, abandoned or disoriented, or want to leave to “go home" or “go to work". For example, try saying: “we are staying here tonight. We are safe and I'll be with you. We can go home in the morning after a good night's rest." Try to refrain from correcting the person living with dementia. z Ensure that all basic needs are met. Has the person gone to the bathroom? Are they thirsty or hungry? z Avoid busy places that are confusing and can cause disorientation, such as shopping malls, markets, grocery stores or other crowded places. Le ss on 8 . W al ki ng an d ge tti ng lo st iS u p p o rt In te rv e n ti o n M an u al MODULE 5 240 Let’s look at an example Amit has dementia and is supported by his wife, Samia. Samia is cooking dinner when she hears Amit heading for the door. She knows that he likes to go for afternoon walks, but now is not a good time since she is cooking. What would you recommend to Samia? Please select all correct responses. „ Yell to Amit from the kitchen, “please stop! I can’t come with you now.” „ Turn the cooker off and follow Amit. „ Forbid Amit to leave and pull him back into the house. „ Go to where Amit is standing by the door and calmly say: “let’s eat dinner first and we’ll go for a walk later.” „ Lock the door so that Amit cannot leave. „ Let Amit leave and call a neighbour to keep an eye out for him. „ Ask another family member to go for a walk with him. „ Ask Amit to help with a task in the kitchen. „ Schedule more afternoon walks before dinner. 1. Check your understanding Dealing with walking away. Le ss on 8 . W al ki ng an d ge tti ng lo st iS u p p o rt In te rv e n ti o n M an u al MODULE 5 241 Let’s look at your own situation It is important to apply what you have learned to your own situation. The spaces below are for you, like a diary. What are the possible reasons why the person you care for may have the desire to walk? Please select all answers that apply. Based on the reasons that you selected, how might you react or respond the next time the person you care for wants to go outside or walk? 2.1. What could you do to help the person enjoy walking in a safe way? Take a moment to summarize the points that you have learned in this lesson, which will help you going forward: „ Wanting to exercise. „ Continuing a lifelong habit of walking regularly. „ Relieving boredom due to not being sufficiently stimulated. „ Using up energy from sitting all day. „ Relieving pain and discomfort from joint pain or stiffness. „ Responding to stress or anxiety. „ Feeling lost or uncertain about their surroundings. „ Going out and forgetting where they were going. „ Searching for someone or something in the past or present. „ Seeking fulfilment and purpose such as the desire to go to work. „ Getting confused about the time „ Other (please state): 2. Activity Le ss on 8 . W al ki ng an d ge tti ng lo st iS u p p o rt In te rv e n ti o n M an u al MODULE 5 242 z Walking around or walking away is common. z Walking can be healthy exercise, reduce boredom, and be a common habit or routine of the person. z Walking away or walking alone might be a safety risk. z Concerns about walking and getting lost can be very upsetting to the person living with dementia and the carer. z It is important to identify possible reasons for walking around or walking away. z How you respond to the desire to walk should be based on the possible reasons for it. z If one approach doesn’t work, try another one. z Realize that there may be worse, but also better moments. z Take a deep breath and think about the best ways to respond that will be the least distressing to you and the person living with dementia. If you want to know more about how to plan an enjoyable day, please refer to the Lesson 5. An enjoyable day in Module 4. You finished this lesson, well done! Let’s review what you have learned Le ss on 8 . W al ki ng an d ge tti ng lo st iS u p p o rt In te rv e n ti o n M an u al MODULE 5 243 iS u p p o rt In te rv e n ti o n M an u al Relaxation exercise - Neck movements AN SW ER S - D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 8 ANSWERS - DEALING WITH BEHAVIOUR CHANGES Lesson 8. Walking and getting lost 8 Yell to Amit from the kitchen, “please stop! I can’t come with you now.” This is not a good response because yelling at Amit from the kitchen may confuse and agitate him. It may also not stop him from going out on his own. 9 Turn the cooker off and follow Amit. This is a good response if there are no other alternatives. 8 Forbid Amit to leave and pull him back into the house. This is not a good response because Amit may get agitated and resist being pulled which could result in Amit or Samia being harmed. 9 Go to where Amit is standing by the door and calmly say: “Let’s eat dinner first and we’ll go for a walk later.” This is a good response because Samia stays calm, does not yell, and honors Amit’s wishes by telling him that they will go together after dinner. 9 Lock the door so that Amit cannot leave. This is a good response if no other options exist and Samia is in the house with Amit. For fire safety reasons, a person living with dementia who requires supervision should never be locked inside a house without another person there. 9 Let Amit leave and call a neighbour to keep an eye out for him. This is a good option if Samia has prearranged with the neighbours to keep an eye out for him. If Amit is in the very early stages of dementia, he may be okay while going out on his own to places that are familiar to him. 9 Ask another family member to go for a walk with him. This is a good option. Samia can finish cooking dinner and Amit can enjoy a nice walk before dinner. 1. Check your understanding Dealing with walking away. iS u p p o rt In te rv e n ti o n M an u al MODULE 5 244 iS u p p o rt In te rv e n ti o n M an u al Relaxation exercise - Neck movements AN SW ER S - D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 8 9 Ask Amit to help with a task in the kitchen. This is a good response because it involves distracting Amit from going for a walk alone and gives him purpose and keeps him occupied. 9 Schedule more afternoon walks before dinner. This is a good response because planning ahead will prevent Samia from being interrupted when cooking dinner to assist Amit. It may also help Amit to release some energy and come home to relax before dinner. 1. Check your understanding (continued) Dealing with walking away. iS u p p o rt In te rv e n ti o n M an u al MODULE 5 245 Why is this lesson important? Changes in judgement can be upsetting to the person living with dementia and the carer. How will this lesson help me? This lesson will help you understand the reasons causing changes in judgement and teach you skills to manage this. What will I learn? 1. What are changes in judgement? 2. How can you manage changes in judgement? 3. What to do if the changes in judgement are more serious? Lesson 9. Changes in judgement 1. What are changes in judgement? Changes in judgement may include saying the wrong thing at the wrong time, acting inappropriately in a situation, or not understanding one’s own limitations. Usually these actions are not harmful, but they can be stressful or embarrassing for the person living with dementia or the carer. People with dementia are often looking for guidance or reassurance. Le ss on 9 . C ha ng es in ju dg em en t iS u p p o rt In te rv e n ti o n M an u al MODULE 5 246 Did you ever notice that the person you care for sometimes has a change in their judgement? If so, what did you observe? Please describe this in the space below. How did it affect you as the carer? 1. Activity Tip Changes in judgement will increase as dementia progresses. In this lesson you can practice several ways of responding to changes in judgement and find out what may help. Le ss on 9 . C ha ng es in ju dg em en t iS u p p o rt In te rv e n ti o n M an u al MODULE 5 247 2. How can you manage changes in judgement? Let’s go through an example Ivan is in town visiting his aunt Isabel who has dementia. They are on their way to a restaurant for dinner. In order to get there, Ivan decides to hail a taxi. All of a sudden, the car pulls up alongside Isabel and startles her. Isabel, who is normally a very gentle woman, starts scolding the taxi driver. What would you recommend to Ivan to help him deal with this situation? Please select all correct responses. „ Put his hand on Isabel’s mouth in order to stop her scolding the driver. „ Walk Isabel back to her apartment and leave because what happened is embarrassing. „ Stay calm and reassure Isabel everything is alright. „ Accept the behaviour. If the taxi driver doesn’t seem to notice, let it be. Find ways to adapt. „ Ivan could carry a business card that explains, ‘My companion has dementia, please be patient with us.’ and give this card to the taxi driver. 1. Check your understanding Managing changes in judgement. Le ss on 9 . C ha ng es in ju dg em en t iS u p p o rt In te rv e n ti o n M an u al MODULE 5 248 3. What to do if changes in judgement are more serious? The last example was a brief and one-time experience for Ivan. However, what happens if the changes in judgement experienced by a person living with dementia are more serious? Here are three examples to help you learn how to react. Mishandling finances Sophie has dementia and lives alone. Her cousin Julia has come to visit her. Despite the fact that Sophie has always been organised, Julia arrives to find that there is a large pile of unopened mail on the kitchen table. Julia wonders if Sophie has had some trouble paying her bills. She asks Sophie about her finances. Sophie cannot remember whether she has paid her bills or not, does not know when they are due, and cannot recall how much money she has in her bank account. Julia becomes quite concerned. What would you recommend to Julia? Please select all correct responses. „ Stay calm and call Sophie’s daughter. „ Go to the bank and ask for control of Sophie’s finances. „ Leave because she feels uneasy. „ Ask Sophie if she would like some help in opening her mail. „ ✓Try to find out whether Sophie has someone who handles her finances, like a family member or a professional. 2. Check your understanding Managing more serious changes in judgement (1). Le ss on 9 . C ha ng es in ju dg em en t iS u p p o rt In te rv e n ti o n M an u al MODULE 5 249 Insisting on driving Hugo is living with dementia. His neighbour, Pablo, notices that his car is parked very strangely one day, obstructing some of the other cars on the street. Pablo walks out of his apartment, sees Hugo and attempts to start a conversation. Instead of stopping, Hugo jumps in his car, speeds off and takes an illegal left turn out of the compound. Hugo returns quickly and nothing bad seems to have happened. What would you recommend to Pablo? Please select all correct responses. „ Immediately seize Hugo’s car keys when he returns. This will prevent it from happening again. „ Stay calm and ask whether Hugo has any other places to go that day, and if so, offer him a ride. „ Ignore the situation because it is embarrassing. „ Ask Hugo if he would like some help figuring out transportation. „ Tell Hugo that he is concerned about his driving and suggest visiting his doctor to discuss it. „ Report the incident to Pablo’s carer, friend or family member. 3. Check your understanding Managing more serious changes in judgement (2). It is better if the decision not to drive comes from the person living with dementia. Giving up driving is typically a difficult time in the person’s life where they are losing independence. Alternatives such as offering regular rides, teaching the person how to use public transportation or arranging taxis will help the person stay active and involved in their community activities. It is important that the person does not become isolated or lonely once they give up driving. More effort will be needed to keep them connected to the world outside their home. Tip Le ss on 9 . C ha ng es in ju dg em en t iS u p p o rt In te rv e n ti o n M an u al MODULE 5 250 Inappropriate sexual advances Mateo is in his late 70s, has dementia and lives with his family. Two days a week, an in-home aide, Camila, who is 22 years old, comes to help him take a bath and administer his medication. This arrangement has been working well for several months. One day, while preparing for his bath, Mateo makes some sexual remarks and tries to pull Camila close to him. Camila is shocked and surprised. She runs out of the room and tells the family that she can no longer work there. If the inappropriate advances continue, the family might want to consider hiring a male in-home aide instead of a female one which could prevent this behaviour. They also might seek help from a professional. Tip What would you recommend to Mateo’s family? Please select all correct responses. „ Stay calm and tell Mateo that this behaviour is unacceptable. Explain who Camila is. „ Change the bathing situation. Perhaps Camila can set up a sponge bath and Mateo can do more himself. „ Change the environment. Put a towel or robe over Mateo’s shoulders while he is being bathed to keep him covered for privacy. „ Shout at Mateo, shaming him for his conduct. „ Ignore the situation. 4. Check your understanding Managing more serious changes in judgement (3). Le ss on 9 . C ha ng es in ju dg em en t iS u p p o rt In te rv e n ti o n M an u al MODULE 5 251 Let’s look at your own situation It is important to apply what you have learned to your own situation. Earlier, we asked whether the person you care for sometimes shows changes in judgement. After going through these examples, think again about your own situation. The spaces below are for you, like a diary. Does the person living with dementia sometimes show changes in judgement? In what way could you respond? Take a moment to summarize the points that you have learned, which will help you deal with changes in judgment in the future. 2. Activity Changes in judgement may hamper decision-making. If you want to know more, review Lesson 3. Supported decision-making in Module 2. Remember Le ss on 9 . C ha ng es in ju dg em en t iS u p p o rt In te rv e n ti o n M an u al MODULE 5 252 z Changes in judgement usually increase as dementia progresses. z Changes in judgement can be very upsetting for the person living with dementia and the carer. z It is important to reduce or prevent changes in judgement, whenever possible. z Realize that there may be good and bad days. z Remind yourself that this is a part of the disease. z Take a deep breath and think about the best ways to respond that will be the least distressing to you and the person you care for. z Plan for increasing levels of changes in judgement. You finished this lesson, well done! Let’s review what you have learned Le ss on 9 . C ha ng es in ju dg em en t iS u p p o rt In te rv e n ti o n M an u al MODULE 5 253 iS u p p o rt In te rv e n ti o n M an u al 8 ✓Put his hand on Isabel’s mouth in order to stop her scolding the driver. This response is not good because it may even worsen the situation and cause Isabel further agitation. ✓ 8 Walk Isabel back to her apartment and leave because what happened is embarrassing. This response is not good because Isabel may feel bad and isolated. 9 ✓Stay calm and reassure Isabel everything is alright. This is a good response because it shows Ivan cares about Isabel. It may stop her from scolding the taxi driver and make her feel more relaxed. What would you recommend to Ivan? 9 ✓Accept the behaviour. If the taxi driver doesn’t seem to notice, let it be. Find ways to adapt. This can be an appropriate response if the behaviour is not harming anyone. 9 Ivan could carry a business card that explains, ‘My companion has dementia, please be patient with us.’ and give this card to the taxi driver. This is a good response because it relieves Ivan from explaining the situation to the taxi driver which may embarrass Isabel. 1. Check your understanding Managing changes in judgement. ANSWERS - DEALING WITH BEHAVIOUR CHANGES Lesson 9. Changes in judgement AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 9 iS u p p o rt In te rv e n ti o n M an u al MODULE 5 254 iS u p p o rt In te rv e n ti o n M an u al 9 Stay calm and call Sophie’s daughter. This response is good because Julia shares her worries with Sophie’s closest relative, her daughter, who might know more and can arrange help if needed. 9 Go to the bank and ask for control of Sophie’s finances. This is not appropriate because it is Sophie’s decision to appoint a person that she is comfortable with to help manage her finances. 9 Leave because she feels uneasy. This response is not appropriate. If Sophie has problems dealing with her finances, letting the situation continue could make things worse. What would you recommend to Julia? 9 Ask Sophie if she would like some help with opening her mail. This response is good because Sophie may be able to pay her bills if given the right prompts, such as opening the bills in front of her and cueing her to pay one at a time. 9 Try to find out whether Sophie has someone who handles her finances, like a family member or a professional. This is a good response because Sophie may be at the point in her illness where she is no longer able to handle the finances on her own. If it seems that she is not getting any help with handling her finances, Julia may want to call her daughter to share her worries. 2. Check your understanding Managing more serious changes in judgement (1). ANSWERS - DEALING WITH BEHAVIOUR CHANGES Lesson 9. Changes in judgement AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 9 iS u p p o rt In te rv e n ti o n M an u al MODULE 5 255 iS u p p o rt In te rv e n ti o n M an u al 8 Immediately seize Hugo’s car keys when he returns because this will prevent it from happening again. This is not a good response because Pablo cannot decide whether his neighbour should drive anymore, and Hugo may become angry. 9 Stay calm and ask whether Hugo has any other places to go that day, and if so, offer him a ride. This is a good response because it prevents Hugo from driving unsafely and provides safe transportation, so Hugo can run his errands. 8 Ignore the situation because it is embarrassing. This response is not good because Hugo’s driving may cause harm to himself and others. What would you recommend to Pablo? 9 Ask Hugo if he would like some help figuring out transportation. This response is appropriate because Hugo may be able to safely ride a bus or walk, preventing any unsafe behaviour. 9 Tell Hugo that he is concerned about his driving and suggest visiting his doctor to discuss it. This is a good response as Pablo respects Hugo by being honest and raising a concern. 9 Report the incident to Pablo’s carer, friend or family member. This is a possible response. Pablo may not know if Hugo has dementia and could be concerned about the risk of harm to Hugo and others. 3. Check your understanding Managing more serious changes in judgement (2). AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 9 iS u p p o rt In te rv e n ti o n M an u al MODULE 5 256 iS u p p o rt In te rv e n ti o n M an u al 9 Stay calm and tell Mateo that this behaviour is unacceptable. Explain who Camila is. This option is a good one. Mateo’s family does not overreact because they remember it is the disease taking effect. They redefine the appropriate boundaries for Camila’s safety. 9 Change the bathing situation. Perhaps Camila can set up a sponge bath and Mateo can do more himself. This is a good option. Letting Mateo do more himself will distract him. In this way, both Camila and Mateo’s dignity are maintained. What would you recommend to Mateo’s family? 9 Change the environment. Put a towel or robe over Mateo’s shoulders while he is being bathed to keep him covered for privacy. This is a good response. Perhaps because Mateo is naked, he misunderstands the situation. 8 Shout at Mateo, shaming him for his conduct. This response is not good because as part of his dementia Mateo may not know that these advances are inappropriate. Therefore, try not to overreact. 8 Ignore the situation. This response is not good because Mateo may continue to make inappropriate sexual advances and cause distress to Camila. 4. Check your understanding Managing more serious changes in judgement (3). AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 9 iS u p p o rt In te rv e n ti o n M an u al MODULE 5 257 Why is this lesson important? Certain changes in behaviour can be particularly stressful for the person living with dementia and the carer. How will this lesson help me? This lesson will summarize ways to prevent, reduce or manage behaviour changes. What will I learn? 1. The most important things to keep in mind when dealing with challenging behaviours. 2. Practical tips on not blaming yourself, sharing your feelings with others and making time for yourself. Lesson 10. Putting it all together 1. The most important things to keep in mind when dealing with behaviour changes z Behaviour changes can be stressful for the person you care for and yourself. This is quite common. z Try to make the person you care for feel more comfortable. z Look for ways to prevent or reduce behaviour changes that are stressful, for example by using memory aids. z Try to distract the person you care for, don’t argue. z When one approach does not work, try another one. z Realize that there may be good and bad days. z Consult a medical doctor to identify any causes related to medication or illness. z Identify whether the environment or your approach could be causing the particular symptom. z Remind yourself that behaviour changes are part of the disease but other possible causes should be identified before accepting the disease as a cause. Le ss on 1 0. P ut tin g it al l t og et he r iS u p p o rt In te rv e n ti o n M an u al MODULE 5 258 2. Practical tips on not blaming yourself, sharing your feelings with others and making time for yourself Here are some tips from related lessons. If you did not take these lessons yet, you can complete them after finishing this one. z Don’t blame yourself or the person living with dementia for the problems that you encounter. If you want to work on ways to manage your feelings, take a look at the last page of Lesson 3. Thinking differently in Module 3. z Share your feelings about your experiences as a carer with others. If you keep them to yourself it may be more difficult for you to look after your family member or friend. If you want to learn more about involving others, take a look at Lesson 4. Involving others in Module 2. z It is essential that you make time for yourself. This will allow you to do the things that you value in life, such as spending time with others or enjoying your favourite hobbies. If you want to learn more about doing pleasant activities, take a look at Lesson 2. Making time for pleasant activities in Module 3. You finished this lesson, well done! Le ss on 1 0. P ut tin g it al l t og et he r Worldwide, carers of people with dementia should have access to information and support in order to effectively respond to, and manage, the physical, mental and social demands associated with caring for someone living with dementia. This iSupport manual has been developed to provide accessible, evidence-based training and information, tailored to carers’ needs. It aims to improve knowledge and caregiving skills, such as carers’ ability to cope with dementia symptoms and care for themselves. iSupport is also available online and can be accessed at www.isupportfordementia.org/en. For further information, please contact: Department of Mental Health and Substance Abuse World Health Organization Avenue Appia 20 CH-1211 Geneva 27 Switzerland Email: whodementia@who.int Wesbite: www.who.int/mental_health/neurology/dementia/en ISBN: 9789241515863

iSupport For Dementia Training and support manual for carers of people with dementia iS u p p o rt In te rv e n ti o n M an u al iSupport For Dementia Training and support manual for carers of people with dementia © World Health Organization 2019 Some rights reserved. This work is available under the Creative Commons Attribution-NonCommercial-ShareAlike 3.0 IGO licence (CC BY-NC-SA 3.0 IGO; https://creativecommons.org/licenses/by-nc-sa/3.0/ igo). Under the terms of this licence, you may copy, redistribute and adapt the work for non-commercial purposes, provided the work is appropriately cited, as indicated below. In any use of this work, there should be no suggestion that WHO endorses any specific organization, products or services. The use of the WHO logo is not permitted. If you adapt the work, then you must license your work under the same or equivalent Creative Commons licence. 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Third-party materials. If you wish to reuse material from this work that is attributed to a third party, such as tables, figures or images, it is your responsibility to determine whether permission is needed for that reuse and to obtain permission from the copyright holder. The risk of claims resulting from infringement of any third-party-owned component in the work rests solely with the user. General disclaimers. The designations employed and the presentation of the material in this publication do not imply the expression of any opinion whatsoever on the part of WHO concerning the legal status of any country, territory, city or area or of its authorities, or concerning the delimitation of its frontiers or boundaries. Dotted and dashed lines on maps represent approximate border lines for which there may not yet be full agreement. The mention of specific companies or of certain manufacturers’ products does not imply that they are endorsed or recommended by WHO in preference to others of a similar nature that are not mentioned. Errors and omissions excepted, the names of proprietary products are distinguished by initial capital letters. All reasonable precautions have been taken by WHO to verify the information contained in this publication. However, the published material is being distributed without warranty of any kind, either expressed or implied. The responsibility for the interpretation and use of the material lies with the reader. In no event shall WHO be liable for damages arising from its use. iSupport for dementia. Training and support manual for carers of people with dementia ISBN 978-92-4-151586-3 Layout by Van Cleef Emnacen CONTENTS Module 1. Introduction to dementia 1 Module 2. Being a carer 11 Lesson 1. The journey together 12 Lesson 2. Improving communication 24 Lesson 3. Supported decision-making 42 Lesson 4. Involving others 57 Module 3. Caring for me 69 Lesson 1. Reducing stress in everyday life 70 Lesson 2. Making time for pleasant activities 82 Lesson 3. Thinking differently 92 Module 4. Providing everyday care 107 Lesson 1. Eating and drinking - more pleasant mealtimes 108 Lesson 2. Eating, drinking and preventing health problems 121 Lesson 3. Toileting and continence care 128 Lesson 4. Personal care 140 Lesson 5. An enjoyable day 152 Module 5. Dealing with behaviour changes 165 Lesson 1. Introduction to behaviour changes 166 Lesson 2. Memory loss 177 Lesson 3. Aggression 187 Lesson 4. Depression, anxiety and apathy 201 Lesson 5. Difficulty sleeping 210 Lesson 6. Delusions and hallucinations 223 Lesson 7. Repetitive behaviour 231 Lesson 8. Walking and getting lost 237 Lesson 9. Changes in judgement 245 Lesson 10. Putting it all together 257 ACKNOWLEDGEMENTS i PREFACE iii USER GUIDE iv iS u p p o rt In te rv e n ti o n M an u al i Technical Reviewers and Advisors Emiliano Albanese, WHO Collaborating Center for Training and Research in Mental Health, University of Geneva, Switzerland; Nicole Batsch, Alzheimer’s Disease International, London, UK; Upasana Baruah, National Institute of Mental Health and Neurosciences, Bangalore, India; Kiki Edwards, Rossetti Care, Ibadan, Nigeria; Kieren Egan, WHO Collaborating Center for Training and Research in Mental Health, University of Geneva, Switzerland; Mariella Guerra, Instituto de la Memoria, Lima, Peru; Jayna Holroyd-Leduc, University of Calgary, Canada; Timothy Kwok, Jockey Club Centre for Positive Ageing, The Chinese University of Hong Kong, Hong Kong; Marleen Prins, WHO Collaborating Centre for Dissemination of Good Practices in Mental Health, Trimbos-Institute, Utrecht, Netherlands; Santosh Loganathan, National Institute of Mental Health and Neurosciences, Bangalore, India; Prafulla Shivakumar, National Institute of Mental Health and Neurosciences, Bangalore, India; Iris van Asch, WHO Collaborating Centre for Dissemination of Good Practices in Mental Health, Trimbos-Institute, Utrecht, Netherlands; Mathew Varghese, National Institute of Mental Health and Neurosciences, Bangalore, Vision, conceptualization and project management Tarun Dua, Anne Margriet Pot (project manager), Shekhar Saxena, Diana Zandi. Project coordination and editing The team that coordinated the development of the manual, including writing and editing, was comprised of Neerja Chowdhary, Stéfanie Fréel, KAnne Margriet Pot and Katrin Seeher. Contribution Valuable help and advice was received from many organizations, experts, people with dementia, and carers who have contributed to the development of iSupport, including but not limited to those mentioned below. Key Contributions Dolores Gallagher-Thompson, Stanford University, Stanford, USA; Kala Mehta, Stanford University, Stanford, USA; Bernadette Willemse, WHO Collaborating Centre for Dissemination of Good Practices in Mental Health, Trimbos-Institute, Utrecht, Netherlands; Lilly Xiao, Flinders University, Adelaide, Australia. ACKNOWLEDGEMENTS AC KN OW LE DG EM EN TS iS u p p o rt In te rv e n ti o n M an u al ii India; Huali Wang, Dementia Care & Research Center, Peking University Institute of Mental Health, Beijing, China; Marc Wortmann, Marc Wortmann Consulting. WHO Staff, Consultants and Interns Alison Brunier, Kenneth Carswell, Emma Cradock, Sophie D’Souza, Melissa Harper Shehadeh, Marije Kaat, Dévora Kestel, Annet Kleiboer, Harleen Rai, Dag Rekve, Hiral Shah, Mark van Ommeren, Shuo Wang. Administrative Support Caroline Herment, Jacqueline Lashley, Adeline Loo, Ophel Riano. Production Team Development (web version): Iris Rosier, Kirsten van der Werff, Katherina Martin Abello, WHO Collaborating Centre for Dissemination of Good Practices in Mental Health, Trimbos-Institute, Utrecht, Netherlands, in collaboration with; Deepak Bhikharie, Edi Recica, Kees Schouten, Aan Zee, Noordwijk aan zee, Netherlands. Illustrations: Janet van der Werff, Drachten, Netherlands. Graphic design and layout (iSupport manual): Van Cleef Emnacen, Philippines. Editing: Harriet Payne, Alzheimer’s Disease International, London, U.K. Financial Support WHO would like to thank the following countries/agencies for supporting the development and production of iSupport: Alzheimer’s Association, U.S.A.; and, the Ministry of Health, Welfare and Sport, Netherlands. Neither of them are individually responsible in any way for the content, functioning of, or views displayed on iSupport. AC KN OW LE DG EM EN TS iS u p p o rt In te rv e n ti o n M an u al iii Being a carer for someone with dementia may affect one’s physical and mental health, well-being, and social relationships. Long- term care systems must account for the significant emotional, financial and social impact of caregiving on families and relatives, while addressing the needs of people with dementia. This includes providing carers with access to education, skills training, respite and social support through affordable, evidence-based resources. To address this need, the World Health Organization (WHO) has developed iSupport, an online skills training and support programme for carers of people with dementia. This iSupport manual allows carers who do not have access to the internet, or who prefer a manual, to benefit from the tool. The iSupport online programme and manual are currently being field-tested. It is our hope that the programme will be adapted by, and implemented in, many countries around the world. Dévora Kestel Director, Department of Mental Health and Substance Abuse Dementia is a major cause of impairement that affects a person’s memory, thinking and behaviour, and interferes with one’s ability to perform daily activities. It affects people worldwide, in particular older people. Globally, families provide the majority of care to people with dementia. The impact of dementia is significant to the individual who lives with dementia, their families, societies and countries, both in financial terms and human costs. The Global action plan on the public health response to dementia 2017-2025 represents an important step forward in achieving physical, mental and social wellbeing for people with dementia, their carers and families. It is an opportunity for individuals, communities and countries to realize the vision of a world in which dementia is prevented and people with dementia and their carers receive the care and support they need to fulfil their potential with dignity, respect, autonomy and equality. P R E FA C E PR EF AC E PREFACE iS u p p o rt In te rv e n ti o n M an u al iv What is included in the iSupport manual? The manual is organized into five modules (see Figure 1 page vi): (1) introduction to dementia; (2) being a carer; (3) caring for me; (4) providing everyday care; and (5) dealing with behaviour changes that might happen in people living with dementia. Module 1 provides an introduction to what dementia is, including what happens to people with dementia and what to do if you think that your family member or friend has dementia. Module 2 focuses on improving communication, shared decision-making and involving others in caring for the person living with dementia. Module 3 aims to reduce carer stress by making time for pleasant activities and thinking differently. Module 4 focuses on eating and drinking, including creating more pleasant mealtimes and preventing health problems, using the toilet and continence care, and personal care. Worldwide, carers of people with dementia should have access to information and support tailored to their needs in order to effectively respond to, and manage, the physical, mental and social demands associated with caring for someone living with dementia. iSupport has been developed to provide accessible, evidence-based training and information, tailored to carers’ needs. It aims to improve knowledge and caregiving skills, such as carers’ ability to cope with dementia symptoms and care for themselves. iSupport seeks to enable people with dementia to live in the community while preventing or reducing carer stress. The lessons included in this manual were carefully designed to help carers tackle the important challenges that they may face when caring for someone living with dementia. US ER G UI DE USER GUIDE iS u p p o rt In te rv e n ti o n M an u al v Finally, Module 5 provides an introduction to common changes in behaviour for people with dementia that might be distressing and upsetting for both the person with dementia and you as the carer. These symptoms include memory loss, aggression, depression and anxiety, difficulty sleeping, delusions and hallucinations, repetitive behaviour, walking and getting lost as well as poor or decreased judgement. Who is the target audience? This iSupport manual is primarily for carers of people with dementia, including family members and relatives, friends, and other carers. However, iSupport may also be of interest to others, for example: z nongovernmental organizations (NGOs) providing skills training, support and/or information to carers of people with dementia; z health and social care workers providing care and information to carers of people with dementia; and z private sector representatives involved in the development of health technologies for dementia, dementia health care service delivery or health care insurance. US ER G UI DE iSUPPORT Caring for me MODULE 3 Being a carer MODULE 2 Providing everyday care MODULE 4 Dealing with behaviour changes MODULE 5 What is dementia and how does it affect someone The journey together Reducing stress in everday life Eating and drinking: more pleasant mealtimes Introduction Delusions and hallucinations Repetitive behaviours Eating and drinking: preventing health problems Memory loss Walking and getting lost Using the toilet and continence care Aggression Poor or decreased judgement Personal care Depression and anxiety Putting it all together An enjoyable day Difficulty sleeping Doing pleasant activities Thinking differently Improving communication Supported decision-making Involving others Introduction to dementia MODULE 1 vi Figure 1 iS u p p o rt In te rv e n ti o n M an u al vii How to use this iSupport manual? iSupport has been developed as a self-help tool for carers of people living with dementia. Each module is divided into individual lessons (see Figure 1). All lessons are structured in the same way. At the beginning, there is an overview of why the lesson is important, how the lesson will help you as a carer and what you will learn. Each lesson then consists of a mixture of brief reading to provide new information, descriptive examples, multiple choice questions and activities to practice what you have learned. You may choose to work through the entire manual from beginning to end or select the lessons that are most relevant to your everyday life. You can also come back to individual lessons. How was iSupport developed? iSupport is grounded in WHO’s Mental Health Gap Action Programme (mhGAP) guidelines for carers of people with dementia. mhGAP aims to scale health and social care services for mental, neurological and substance use disorders for all countries, with a focus on low- and middle-income countries (LMICs). iSupport was developed based on evidence related to the feasibility and effectiveness of carer training and support interventions, both in person and online. Finally, the programme was developed in collaboration with international experts in the field of caregiving for people with dementia and internet-based interventions, and reflects the voices of carers of people with dementia. For more information on the development of iSupport see Pot et al (2019)1. US ER G UI DE 1 Pot AM, Gallagher-Thompson D, Xiao LD, Willemse BM, Rosier I, Mehta KM, Zandi D, Dua T. iSupport: a WHO global online intervention for informal carers of people with dementia. World Psychiatry. 2019. iS u p p o rt In te rv e n ti o n M an u al viii These exercises will help you feel calm and reduce stress. We include one relaxation activity at the end of each lesson. There is also an entire lesson on relaxation activities included in Module 3. Relaxation activity Tip/Reminder/Keep in Mind Tips help you reflect on your learning or give practical reminders of how to apply what you have learned to your everyday life. Activity Here you will be asked to reflect upon how caregiving for a person with dementia is affecting your life or the life of the person with dementia. Example. How are you feeling right now? Please select all that apply. † Sad † Happy † Angry † ConfusedCheck your understanding Here you will be asked a question about what you have learned. Answers are at the end of every lesson. Example: What color is the sky? † Green † Blue † Red † Orange US ER G UI DE Below is a guide to the individual exercises and activities that you will encounter throughout the manual. These exercises and activities allow for you to check your understanding and reflect on your learning in practical ways. iS u p p o rt In te rv e n ti o n M an u al ix Other uses of iSupport Although iSupport is primarily a self-help tool, we encourage a broader use. For example, iSupport might be supplemented by guidance from volunteers or health care workers to create more impact. The iSupport manual can also serve as a tool to structure educational or support group meetings for carers of people with dementia, or it may simply be used as a resource tool for participants of self-help groups. Finally, health care workers might find iSupport useful in assisting and supporting carers. Please note that both the iSupport online training programme and this manual are subject to ongoing rigorous field-testing and evaluation. More research is needed to evaluate the effectiveness of local adaptions and implementations. How to adapt iSupport? The iSupport manual represents a template that can be adapted to national or local contexts and needs. An adaptation and implementation guide is available to assist countries/communities in this process. WHO owns the copyright on iSupport. If you are interested in adapting and implementing iSupport, please contact WHO at whodementia@who.int to request a copyright license. This applies to both the iSupport manual and the online programme, accessible at www.iSupportForDementia.org. US ER G UI DE M od ul e 1 . I nt ro du ct io n to d em en tia M od ul e 1 . I nt ro du ct io n to d em en tia INTRODUCTION TO DEMENTIA 1 MODULE iS u p p o rt In te rv e n ti o n M an u al 2 Introduction to dementia Why is this lesson important? Dementia is a disease that can be overwhelming for the person with dementia, but also for you as a carer. There are many myths about dementia and learning more will help explain some common misunderstandings. How will this lesson help me? This lesson helps you to understand the basics of what dementia is and how it affects someone. This information is essential when you are a carer. What will I learn? 1. What is dementia? 2. What causes dementia? 3. What happens to people with dementia as the disease progresses? 4. What to do if you think that the person you care for has dementia? 5. How to reach out for help? 6. What is the focus of this manual? MODULE 1 In tro du ct io n to d em en tia iS u p p o rt In te rv e n ti o n M an u al 3 1. What is dementia? Dementia occurs as a result of a disease process that increasingly damages the brain over time. Dementia affects all groups of society and is not linked to social class, gender, ethnic group, or geographic location. Dementia is not a part of normal ageing. Although dementia is more common among older people, younger people can also be affected. 2. What causes dementia? Dementia is caused by a number of diseases which destroy nerve cells and damage the brain, as outlined below. Alzheimer’s disease Alzheimer’s disease is the most common cause of dementia. It destroys brain cells and nerves, disrupting the transmitters that carry messages in the brain, particularly those responsible for storing memories. Vascular dementia Vascular dementia occurs where blood vessels are damaged, the supply of oxygen to the brain fails and as a result, brain cells die. The symptoms of vascular dementia can occur either suddenly, following a stroke, or over time, through a series of small strokes. Vascular dementia accounts for 20%-30% of all cases of dementia. Dementia with Lewy bodies Dementia with Lewy bodies is similar to Alzheimer’s disease in that it is caused by deteriorating and dying nerve cells in the brain. It takes its name from abnormal deposits of protein - Lewy bodies - in the nerve cells of the brain. It may account for around 10% of all cases of dementia. Approximately, half the people with Lewy body disease also develop signs and symptoms of Parkinson’s disease. MODULE 1 In tro du ct io n to d em en tia iS u p p o rt In te rv e n ti o n M an u al 4 Fronto-temporal dementia In fronto-temporal dementia - including Pick’s disease - damage is usually concentrated in the front part of the brain. In the beginning, personality and behaviour are more affected than memory. Rarer causes of dementia There are many other rarer causes of dementia, such as alcohol-related dementia and dementia due to HIV/AIDS. 3. What happens to people with dementia as the disease progresses? Every person is unique and dementia affects people differently. No two people will develop the same difficulties in exactly the same way. It is not just the brain damage that determines how dementia affects someone, but also other factors including an individual’s personality, life course, general health and functioning, and living environment. MODULE 1 People with dementia often forget things or have trouble with their memory. Select the correct answer. „ TRUE „ FALSE 1. Check your understanding What happens to people with dementia? In tro du ct io n to d em en tia iS u p p o rt In te rv e n ti o n M an u al 5 Dementia symptoms can range from minor memory loss to severe difficulties in memory and thinking that make it impossible to manage daily activities without help. It can be helpful to view dementia as a series of stages to understand the illness. However, it is important to realize that this only provides a rough guide to the progress of dementia. Not all people with dementia will have all symptoms and some of the symptoms may only appear at one stage of the disease. In the early stage of the disease, people with dementia may have memory problems, become disoriented with respect to time, lost in familiar places and show difficulties making decisions. As dementia progresses to the middle stage, people with dementia may become very forgetful and in need of help with daily activities such as shopping, dressing, and washing. Dementia has stages In the late stage, people with dementia may not recognize relatives or friends anymore may display changes in behaviour that can be upsetting and distressing to the person with dementia and those around them. MODULE 1 In tro du ct io n to d em en tia iS u p p o rt In te rv e n ti o n M an u al 6 Here are some common things that may happen to people with dementia. Do you think that your family member/friend/the person that you care for experiences any of the following? Please select all that apply. 1. Activity Does the person you care for… Have trouble remembering things that happened minutes before? Find it difficult to perform daily activities? Struggle to identify time or place? Communicate differently than they did before? Misplace things? Withdraw socially? Show changes in feelings or personality? „ Yes „ No „ Yes „ No „ Yes „ No „ Yes „ No „ Yes „ No „ Yes „ No „ Yes „ No zz Forgetting recent events zz Repeating questions zz Money management zz Shopping zz Preparing dinner zz Forgetting the date and time of appointments zz Difficulty expressing oneself zz Difficulty finding the right words zz Not finding common objects, such as keys zz Suspecting things are stolen zz Showing decline in social activity zz Lacking urge to do something zz Having a lot of ups and downs zz Becoming more anxious than before Examples MODULE 1 In tro du ct io n to d em en tia iS u p p o rt In te rv e n ti o n M an u al 7 4. What to do if you think that the person you care for has dementia? If you think that a family member or friend may have dementia, a good first step is to make sure that they see a medical doctor. The doctor will examine their body and brain functioning. One important point to rule out is whether the person’s memory problems are caused by other treatable conditions such as depression, urinary tract infection, medication side effects, lack of vitamins or a brain tumor. It is important to identify whether the person’s memory problems are really part of dementia or are part of something else. Only a medical doctor can do this, not this manual. What is the first step if you think that a family member or friend has dementia? Please put a check mark () in front of the answers that you think are correct and a cross () in front of those that are wrong. „ Call a friend or relative. „ Use iSupport alone for help. „ Call a medical doctor’s office and make an appointment. „ The person has been to a medical doctor already and has been diagnosed with dementia. First steps MODULE 1 2. Check your understanding What to do if you think that the person you care for has dementia? In tro du ct io n to d em en tia iS u p p o rt In te rv e n ti o n M an u al 8 5. How to reach out for help? It is important to realize that you, alone, are not going to be able to provide all the care that the person living with dementia needs, especially not as things get more complex over time. So, we encourage you to reach out to family members, friends, and professional organizations or services for help. In many countries there are several resources that are very helpful. Some are free while others are not. Please contact your local Alzheimer’s Association for information, support and care that is available in your area and could benefit the person you care for as well as yourself. 6. What is the focus of this manual? The focus is on you, a carer of someone with dementia. Dementia can be overwhelming. For this reason, iSupport provides you with support to cope with caregiving on a day- to-day basis. It is really important that you not only take care of the person living with dementia but also take care of yourself. iSupport will show you how. It will also show you some common scenarios that might happen with people with dementia so that you are aware and can practice how to respond to such situations. Keep in Mind z Dementia affects a person’s brain. z Dementia is common, especially in older people. z Dementia is a disease, not a part of ageing. z As a first step it is important to see a medical doctor, if possible. z It is important for you to take care of yourself, not only the person you care for. z iSupport can support you as a carer. MODULE 1 In tro du ct io n to d em en tia iS u p p o rt In te rv e n ti o n M an u al 9 MODULE 1 In tro du ct io n to d em en tia You finished this lesson, well done! iS u p p o rt In te rv e n ti o n M an u al 10 People with dementia often forget things or have trouble with their memory. 9 True: This is the correct answer. 8 False: This is the incorrect answer. The right answer is that people with dementia often forget things or have trouble with their memory. What is the first step if you think that the person you care for has dementia? 8 ✗Call a friend or relative While friends and family can offer support, this cannot replace a medical exam given by a certified medical doctor. 8 Use iSupport alone for help While this manual provides information and support, it cannot replace a medical exam given by a certified medical doctor. 9 Call a medical doctor’s office and make an appointment This is the best first step if you have not done so already. 9 The person has been to a medical doctor already and has been diagnosed with dementia You have already completed the first important step. MODULE 1 1. Check your understanding What happens to people with dementia? 2. Check your understanding What to do if you think that the person you care for has dementia? ANSWERS - INTRODUCTION TO DEMENTIA AN SW ER S - IN TR OD UC TI ON TO D EM EN TI A M od ul e 2 . B ein g a c ar eg ive r BEING A CARER Lesson 1. The journey together Lesson 2. Improving communication Lesson 3. Supported decision-making Lesson 4. Involving others 2 MODULE iS u p p o rt In te rv e n ti o n M an u al 12 1. How may your roles change over time? You may feel as if your role is changing. In the early stages of dementia, you may still be able to enjoy many different activities together. As dementia progresses, the person will have more difficulty with everyday tasks. This will require a carer to do more to help with everyday life, such as giving medications and taking the person with dementia to appointments. In the middle and later stages of dementia, a carer might need to do even more for the person with dementia. This may include personal care, such as bathing, going to the toilet and dressing. Some tasks may be challenging for carers and cause stress. Why is this lesson important? Dealing with dementia is a journey you will take together, because it changes the daily life of both the person living with dementia and the carer. How will this lesson help me? This lesson teaches you skills for your journey together: to stay connected, involve others, take care of yourself, and plan for the future. What will I learn? 1. How may your roles change over time? 2. How to stay connected with the person you care for? 3. How to plan pleasant activities and relaxation? 4. How to involve others? 5. How to plan well for the future? Lesson 1. The journey together MODULE 2 Le ss on 1 . T he jo ur ne y t og et he r iS u p p o rt In te rv e n ti o n M an u al 13 Olivia has dementia and lives with her husband Jacob. During the past few months, Olivia’s memory loss seems to be more frequent. The last few times Olivia went shopping, she could not remember what to buy. She came home with the wrong things, which was frustrating. Let's look at an example How should Jacob approach Olivia about what happened? Check all the responses you feel are appropriate. „ Leave Olivia alone and see what happens. „ Ask Olivia to ‘work harder’ to remember things. „ Do not let Olivia shop anymore. „ Ask Olivia how she feels about her memory loss. „ Do not blame Olivia, but make a shopping list together with her each time prior to shopping. 1. Check your understanding Frustration about memory loss. MODULE 2 Le ss on 1 . T he jo ur ne y t og et he r iS u p p o rt In te rv e n ti o n M an u al 14 2. How to stay connected with the person with dementia? Here are some small tips to help you communicate better with someone living with dementia: z use simple sentences; z try to stay in control of your feelings; z create time for yourself and for each other. For more tips on how to improve communication with the person living with dementia, including in the later stages of the disease, read Lesson 2. Improving communication in this module. Tip MODULE 2 Le ss on 1 . T he jo ur ne y t og et he r It is important to keep talking together. The sooner you start talking about dementia and its effects on you and the person you care for, the better. Dementia will make doing this more difficult as time goes by. Talk about the changes happening now and what might happen in the future. Stay connected with each other and discuss the changes that may occur over time. It is important to keep talking together. iS u p p o rt In te rv e n ti o n M an u al 15 Providing care may become increasingly time consuming as the disease progresses. Sometimes carers do not take enough time for themselves. It is really important to try and take care of yourself as best as you can, as some carers may break down from the stress. Part of the journey together should include planning pleasant activities and relaxation for yourself. For more tips on how to relax, read Lesson 1. Reducing stress in everyday life in Module 3. For more tips on how to stay in control of your feelings read Lesson 3. Thinking differently in Module 3. For more tips on how to plan pleasant activities for yourself, read Lesson 2. Making time for pleasant activities in Module 3. 3. How to plan pleasant activities and relaxation? MODULE 2 Le ss on 1 . T he jo ur ne y t og et he r Taking care of yourself is important. iS u p p o rt In te rv e n ti o n M an u al 16 Caregiving can sometimes challenge friendships and relationships. It is common for people providing care to feel that no one understands what they are going through. Talking about your thoughts and feelings with others might help make you feel better. 4. How to involve others? Caring for someone with dementia does not have to be a lonely experience. Let friends and family members know when you could use a break. Caring for a loved one with dementia is sometimes too big a job for one person. Molly’s mother-in-law, Jess, has dementia. Molly has a big deadline at work and needs to leave at 7:30 the next morning. The paid in-home helper is not able to arrive until 9:00 in the morning. This leaves Jess alone for over an hour. Molly wonders whether it would be okay to leave Jess alone and feels stressed because she is not sure what to do. How could Molly deal with the situation? Check all of the responses that you feel are appropriate. „ Leave Jess alone and see what happens. „ Ask a neighbour to come visit Jess until the paid in- home helper arrives. „ Ask Jess to ‘take care of herself’. „ Ask her husband to go into work late so he can be with Jess until the paid in-home helper arrives. „ Ask the paid in-home helper to come in early. 2. Check your understanding Feeling stressed due to conflicting duties. MODULE 2 Le ss on 1 . T he jo ur ne y t og et he r iS u p p o rt In te rv e n ti o n M an u al 17 5. How to plan well for the future? Preparing for the future is a topic that will need to be discussed. You will need to make decisions with the person you care for about preferences for who might provide care, planning for the costs of future care needs, and preferences in case of more advanced care needs and end of life decisions. Many people providing care, like you, worry about the future. The earlier you plan for the future, the better and easier it will be for you. Planning early will also ensure that the person you care for will be better able to say what their wishes are. Where possible, discuss topics that concern you. Here are some common questions that carers have. You may want to discuss these with the person you care for. Write down the responses to the questions. What are the person’s preferences when they are no longer able to bathe themselves? For example, would they prefer a male or female to help bathe them? How do they feel about having a close family member bathe them or would they prefer a qualified professional who is unrelated? What does the person you care for want to do themselves for as long as possible? MODULE 2 Le ss on 1 . T he jo ur ne y t og et he r 1. Activity iS u p p o rt In te rv e n ti o n M an u al 18 MODULE 2 Le ss on 1 . T he jo ur ne y t og et he r 1. Activity What are their wishes at the end of life? If you find it helpful, please write down the questions that you might want to discuss in the space below. If more assistance is needed at home, what kind of help would the person you care for prefer now and/or in the future? iS u p p o rt In te rv e n ti o n M an u al 19 What are some ways that Jacob and Olivia can maintain their intimacy as Olivia’s dementia progresses? Think about it before reading on. MODULE 2 Le ss on 1 . T he jo ur ne y t og et he r 2. Activity Let’s revisit the scenario with Olivia and Jacob Intimate relationships may change As you progress through the journey together, partners may experience some changes in their intimate relationship. At first, sexual relationships between partners may still be possible. As the disease progresses, sexual relationships and physical intimacy may become more difficult. Olivia is in the early stages of dementia and lives with her husband Jacob. Olivia and Jacob have a healthy, mutually satisfying physical relationship, but Jacob is worried about the day when these relations may stop. iS u p p o rt In te rv e n ti o n M an u al 20 Ways to stay connected z Use touch, hold hands or do a gentle massage to communicate warmth, connection, safety and love. z Use music – it is truly a universal language. Play music that the person you care for likes and that makes them feel good. z Try to maintain your sense of humour. This will help reduce frustration and tension. z Talk with them about what they like and need – it’s an important conversation to have more than once, as things change over time. z It is okay to take a break. z It is okay to ask for help. z It is okay to feel frustrated sometimes. z It is okay to feel lonely sometimes if you feel that the person you care for is no longer able to meaningfully communicate with you. Taking care of yourself One of the most important things to remember as roles change is that you, as someone providing care for a person with dementia, need to care for yourself too. Throughout this manual we will teach you ways to do this. Here are some tips for partners on how to maintain intimacy, even when sexual relations may no longer be possible with the person living with dementia. MODULE 2 Le ss on 1 . T he jo ur ne y t og et he r Tip Reminder iS u p p o rt In te rv e n ti o n M an u al 21 z As your role changes, it is important to stay connected during your journey together. z Make sure that you plan pleasant activities and relaxation so that your role does not become overwhelming. z Ask for help because providing care to someone with dementia can be tiring. z Make sure that you plan well for the future. z There are many different ways to maintain intimacy and stay connected. Let’s review what you have learned For more tips on how to relax, read Lesson 1. Reducing stress in everyday life in Module 3. MODULE 2 Le ss on 1 . T he jo ur ne y t og et he r You finished this lesson, well done! iS u p p o rt In te rv e n ti o n M an u al 22 9 Ask Olivia how she feels about her memory loss This is a good response because Jacob is addressing the issue by discussing its impact on Olivia and staying ‘connected’. Jacob could also share his own worries about he memory loss. 9 Do not blame Olivia, but make a shopping list together with her each time prior to shopping. This is a very good response, because this will help Olivia to continue shopping and maintain her independence as long as possible. How should Jacob approach Olivia about what happened? 8 Leave Olivia alone and see what happens This is not a helpful response, because Olivia and Jacob both feel frustrated. To stay connected it is important to talk about their frustration and worries about the future. 8 Ask Olivia to ‘work harder’ to remember things This is not a good response, because memory loss is part of living with dementia, it is unlikely to change. 8 Do not let Olivia shop anymore. This is not a good response because doing the shopping is important to Olivia. Shopping may give Olivia purpose in life and a feeling of dignity. ANSWERS - BEING A CARER Lesson 1. The journey together MODULE 2 1. Check your understanding Frustration about memory loss. AN SW ER S - B EI NG A C AR ER • Le ss on 1 iS u p p o rt In te rv e n ti o n M an u al 23 How could Molly deal with the situation? 9 Ask a neighbour to come visit Jess until the paid in- home helper arrives. This is helpful because it ensures Jess’ safety. Molly can do her work and also gets a short break from caregiving. 9 Ask her husband to go into work late so that he can be with Jess until the paid in-home helper arrives. This is a good response. It shows that Molly is trying to involve her family members for support and gives her the break that she needs. 9 Ask the paid-in home helper to come in early. This is a good response but it may not be possible because of the short notice. 8 Leave Jess alone and see what happens. This is not a good response, because it potentially puts Jess in danger and Molly will not be able to perform well at work with the added stress of leaving Jess. 8 Ask Jess to ‘take care of herself’. This is not a good response because her dependence on others is part of living with dementia and unlikely to change. MODULE 2 2. Check your understanding Feeling stressed due to conflicting duties. AN SW ER S - B EI NG A C AR ER • Le ss on 1 iS u p p o rt In te rv e n ti o n M an u al 24 Why is this lesson important? Dementia can often make communication difficult. How will this lesson help me? This lesson helps you to talk in a simple and direct way and show your compassion in everyday situations. What will I learn? 1. How to improve communication? 2. How to check the person’s ability to hear and see? 3. How to get attention in a respectful way? 4. How to keep it simple? 5. How to take the person seriously? 6. How to pay attention to reactions? 7. How to give compliments? 8. How to show compassion? 1. How to improve communication? In this lesson you will learn about tools and tips for good communication. Dementia can often make communication difficult. This can have an impact on your relationship with the person you care for. It can even make them or you frustrated, sad or angry. When you communicate with the person you care for, for example by talking to them or giving them a hug, make sure that they understand what you mean by your action and that you understand them too. Lesson 2. Improving communication MODULE 2 Le ss on 2 . I m pr ov in g co m m un ica tio n iS u p p o rt In te rv e n ti o n M an u al 25 For all communication - talking, touching or gestures – the basics, like the ability to see and hear, are important. Unfortunately, dementia may impair someone’s ability to hear and see. Therefore, it is important that you check whether the person's hearing and sight could be improved by making changes in their environment or arranging for any relevant medical check-ups. 2. How to check the person’s ability to hear and see?Show compassion by listening, take the person you care for seriously, treat them with respect and dignity, show interest, or give them a smile or a hug. This is very important for every human being, including people with dementia. In this lesson we help you to show compassion. Some important basic skills for communication will be explained. MODULE 2 Le ss on 2 . I m pr ov in g co m m un ica tio n Imagine for a moment that you are living with dementia. What would you like other people to do? Please select all that apply. „ Listen to how you feel. „ Talk behind your back. „ Give you a smile. „ Say that they do not care. „ Tell you that they love you. „ Treat you like a child. „ Approach you with respect and dignity. 1. Check your understanding Imagine that you are living with dementia. iS u p p o rt In te rv e n ti o n M an u al 26 Exercise to improve sight The ability to see is important for communication. Check the items below to help improve sight. In general, people with dementia need more light to see clearly. Increase light levels and use daylight where possible. It will help the person living with dementia to see well. You may also think of leaving lights on at night so the person can find the bathroom. Dementia can make it hard to see contrasts. For example, if there is a white plate on a white table, people with dementia may have difficulty seeing the plate. A coloured plate or tablecloth may help. Does the person living with dementia lose or misplace their glasses frequently? Encourage them to always put the glasses in the same spot to reduce frustration over having to look for them. Sometimes a neck cord is also helpful in that case. If the person living with dementia wears glasses, check whether they are clean and still comfortable to wear. Are the glasses comfortable around the ears and nose? If the person living with dementia does not have glasses, but cannot see well anymore, consult a doctor. If the person living with dementia wears glasses, check to see if the prescription is still accurate, or consult a doctor. Is there enough light? „ Yes „ No „ Yes „ No „ Yes „ No „ Yes „ No „ Yes „ No Is there enough contrast in colours? Is the person living with dementia wearing their glasses? Are the glasses still okay? Do you need to consult a doctor? Tips 1. Activity MODULE 2 Le ss on 2 . I m pr ov in g co m m un ica tio n iS u p p o rt In te rv e n ti o n M an u al 27 Exercise to help improve hearing The ability to see is important for communication. Check the items below to help improve hearing. Minimizing background noise will help to improve hearing. Perhaps take the person living with dementia to a quieter location with fewer distractions. Turn off the television or radio when trying to communicate with them. The person living with dementia may forget to wear the hearing aid or require help or assistance with putting it in properly. If the person living with dementia is wearing a hearing aid, check whether it is clean, fits snugly in the ear canal, is still comfortable to wear and the batteries are charged. If the person living with dementia wears a hearing aid, check if the prescription is still accurate, or whether you need to consult a doctor. If the person living with dementia does not have a hearing aid, but cannot hear well anymore, you should also consult a doctor. Is there too much noise? Is the hearing aid still okay? Do you need to consult a doctor? If the person living with dementia has a hearing aid, is he/she wearing it? Tips MODULE 2 Le ss on 2 . I m pr ov in g co m m un ica tio n 2. Activity „ Yes „ No „ Yes „ No „ Yes „ No „ Yes „ No iS u p p o rt In te rv e n ti o n M an u al 28 3. How to get attention in a respectful way? The person living with dementia is a person with feelings, no matter how serious the disease is or how advanced communication problems are. Therefore, an important first step is to make contact with the person you care for by catching their attention. Below are some suggestions regarding how to capture the attention of a person living with dementia. Please put a check mark () in front of the answers that you think are correct and a cross () in front of those that are wrong. „ Raise your voice or shout. „ Speak clearly and slowly, at a volume that is comfortable for the person, face to face and at eye level. „ Tap a hand, arm or front of the shoulder. „ Stop and hold the person to make him or her listen. „ Approach the person from the back and touch their shoulder. „ Call the person living with dementia by a name that they recognize. MODULE 2 Le ss on 2 . I m pr ov in g co m m un ica tio n 2. Check your understanding Get attention in a respectful way. z Gaining attention is a first important step for good communication. z There are different ways to gain the attention of a person living with dementia in a respectful manner. Remember iS u p p o rt In te rv e n ti o n M an u al 29 Jonathan takes care of his father who has dementia. Jonathan notices that his father does not understand him. Can you tell why? Check the items in the list below that you think could impair communication between Jonathan and his father. „ The radio is on. „ Jonathan is making a phone call. „ Jonathan asks multiple questions at the same time. z Ask or tell the person living with dementia one thing at a time. z Use simple language and keep sentences short. Avoid long and complicated sentences, focus on one subject at a time. z When needed, change from open-ended to closed-ended questions that can be answered with YES or NO. z Make sure there are no distracting background noises such as a television or radio. Often the language we use to get a message across is too complicated. Keeping it simple will help the person you care for understand you better. 4. How to keep it simple? MODULE 2 Le ss on 2 . I m pr ov in g co m m un ica tio n Keep in Mind 3. Check your understanding Keep it simple. iS u p p o rt In te rv e n ti o n M an u al 30 At some point, you may not understand what the person you care for means. The language they use may even seem strange or funny. However, it is important that you take them seriously. The person you care for is trying to tell you something, even though their communication skills may be impaired due to the dementia. 5. How to take the person seriously? MODULE 2 Le ss on 2 . I m pr ov in g co m m un ica tio n It is important that you take the person you care for seriously. iS u p p o rt In te rv e n ti o n M an u al 31 John is visiting his father who has dementia. When his father wants to describe his morning to John, he cannot find the right words. John says to his wife in front of his father: “I have no clue what he means!” His wife answers: “Yes, I don’t know either. He is just like a child!” Let's look at an exampleMODULE 2 Le ss on 2 . I m pr ov in g co m m un ica tio n Which of the following statements do you think is correct? Check all the responses that you feel are appropriate. „ John should not talk about his father when he is in same the room. John could have said: “It is difficult to understand what you mean.” In addition, he could have asked some questions that his father could have answered with ‘YES’ or ‘NO’. For example: “Have you gone outside this morning?” „ John and his wife could be more patient. „ John and his wife could ask John’s father if it is okay when they try to guess what he wants to say. „ It is important that John and his wife talk about the difficulty to understand John’s father in front of him. „ His wife is right: a person living with dementia is just like a child. 4. Check your understanding Take the person seriously. z It is important to take the person that you are caring for seriously and treat them with respect and dignity. z Do not talk about them in their presence. z Be patient and give them time to find the right words. z When the person you care for is difficult to understand, it may help to ask closed- ended questions that can be answered with YES or NO to understand what they mean. Remember iS u p p o rt In te rv e n ti o n M an u al 32 Take a look at the cartoons below. Do you understand these feelings? Select the right answer for each cartoon. You can tell a lot from the way someone speaks and looks. For example, if someone is smiling, you can assume that this person is in a good mood. Keeping this in mind will help you communicate with the person you care for. 6. How to pay attention to reactions? Happy Angry Sad Scared Happy Angry Sad Scared Happy Angry Sad Scared Happy Angry Sad Scared z Facial expressions and body language tell us how a person is feeling. Other examples of body language include fidgeting, having arms crossed or pacing. These can give us messages about how the person may be feeling. For example whether the person may be nervous, upset or anxious. z Take notice of the responses and body language of the person you care for. MODULE 2 Le ss on 2 . I m pr ov in g co m m un ica tio n 5. Check your understanding Pay attention to reactions. Keep in Mind iS u p p o rt In te rv e n ti o n M an u al 33 7. How to give compliments? Complimenting the person you care for is important. In general, it is much more effective to say what someone is doing well, than to say what they are doing wrong. A compliment can range from commenting that someone has done something well to saying that they look nice. You can give compliments in different ways and in different situations. Here is a list of statements. These statements include several compliments. However, there are also some statements that are not compliments. Please put a check mark () in front of the statements that are compliments and a cross () in front of those that are not. „ You look beautiful. „ You are good at ... „ What are you doing?! Stop it! „ You are very helpful. Thank you. „ You are making a mess. „ You should be ashamed of forgetting everything. „ I love having you around. „ You are driving me crazy. „ You have a great smile. Statements MODULE 2 z The person you care for will feel good if you say something positive. z Compliments can be given in many different ways. z Saying something negative will make a person feel bad. Keep in Mind 6. Check your understanding Give compliments. Le ss on 2 . I m pr ov in g co m m un ica tio n iS u p p o rt In te rv e n ti o n M an u al 34 Think about all the things that you like about the person you care for. Now try to write down something you would say to give them a compliment. MODULE 2 3. Activity Le ss on 2 . I m pr ov in g co m m un ica tio n iS u p p o rt In te rv e n ti o n M an u al 35 It is important that you show compassion, even if a person living with dementia is repeating the same questions over and over again, or understanding each other becomes increasingly difficult. You need to remember that dementia is a disease that can make communication difficult. For example, a person living with dementia may have forgotten what they just said. You need to use extra effort and be patient with the person you care for. 8. How to show compassion? MODULE 2 Le ss on 2 . I m pr ov in g co m m un ica tio n William often visits his sister, Elena, who lives with dementia. Elena’s husband passed away six months ago. When William is visiting, Elena often asks where her husband is. William finds this difficult. He knows Elena is missing her husband and may have forgotten that he died. William tries to distract her by asking questions about other things, such as: ”How was your day?” Elena persists in asking where her husband is. Today William tries a different approach William says to Elena: “It must be difficult for you that he died”. He gives Elena a hug. William shows Elena some pictures of her husband that he brought from home and talks to her about her husband. William showed that he understands that Elena is missing her husband and tries to support her. Let's look at an example Did William respond well? Please select the correct answer below. „ YES „ NO Did William respond well? Please select the correct answer below. „ YES „ NO 7. Check your understanding How to show compassion (1). 8. Check your understanding How to show compassion (2). iS u p p o rt In te rv e n ti o n M an u al 36 Keep in mind that people with dementia also have the right to grieve the loss of a loved one in a safe and supportive setting. The example of William and his sister, Elena, shows that: z You can show compassion in different ways. z It is important to take a person living with dementia seriously and to pay attention to the questions they have. z Showing compassion helps to improve your relationship with the person you care for. You have practiced the following communication skills: z check ability to hear and see; z get attention in a respectful way; z keep it simple; z take the person seriously; z pay attention to reactions; z give compliments; z show compassion. Let’s review what you have learned MODULE 2 Le ss on 2 . I m pr ov in g co m m un ica tio n You finished this lesson, well done! iS u p p o rt In te rv e n ti o n M an u al 37 MODULE 2 ANSWERS - BEING A CARER Lesson 2. Improving communications What would you like other people to do? 9 Listen to how you feel 8 Talk behind your back 9 Smile at you 8 Say that they do not care 9 Tell you that they love you 8 Treat you like a child 9 Approach you with respect and dignity 1. Check your understanding Imagine that you are living with dementia. AN SW ER S - B EI NG A C AR ER • Le ss on 2 iS u p p o rt In te rv e n ti o n M an u al 38 MODULE 2 8 ✗Stop and hold the person to make them listen. This is not a respectful way to get attention. It may even make the person living with dementia feel distressed or angry. 8 Approach from the back and touch the person’s shoulder. This may startle someone who is not expecting you or perhaps did not hear you coming. 9 Call the person living with dementia by a name that he or she recognizes. This is a good way to attract the attention of a person living with dementia. You might use their first name or a nickname that was used in the past. Below are some suggested ways to get the attention of a person living with dementia. What are the right and wrong answers? ✗ 8 Raise your voice or shout. Raising your voice is not a respectful way to gain attention. It may even make the person living with dementia feel sad, frustrated or angry. 9 Speak clearly, slowly, at a volume that is comfortable for the person, face to face and at eye level. This is an appropriate way to make contact. It shows that you are seeking contact in a respectful manner. 9 Tap a hand, arm or front of the shoulder. This is a good way to attract the attention of a person living with dementia. 2. Check your understanding Get attention in a respectful way. AN SW ER S - B EI NG A C AR ER • Le ss on 2 iS u p p o rt In te rv e n ti o n M an u al 39 Jonathan takes care of his father who has dementia. Jonathan notices that his father does not understand him. Can you tell why? 9 The radio is on. Very good! A radio can be very distracting. It makes it difficult to follow what someone else is saying, especially for people with dementia who can have difficulty concentrating. 9 Jonathan is making a phone call. Very good! Making a phone call does not show interest and will confuse his father. It’s important for people with dementia to try and stay focused on one task. It will be difficult to get back on the same subject after making a phone call. 9 Jonathan asks multiple questions at the same time. Correct! Asking too many questions at the same time makes it difficult for his father to understand. MODULE 2 3. Check your understanding Keep it simple. AN SW ER S - B EI NG A C AR ER • Le ss on 2 Which of the following statements do you think is correct? 9 John should not talk about his father when his father is in same the room. He could have said, “It is difficult to understand what you mean.” In addition, he could have asked some questions that his father could have answered with ‘YES’ or ‘NO’. For example: “have you gone outside this morning?” Correct! John takes his father seriously when trying to understand what he wants to say. Do not talk about the person you care for while they are in the same room. 9 John and his wife could be more patient. Correct! It takes people with dementia longer to find the right words and they need time and patience to be understood. 4. Check your understanding Pay attention to reactions. iS u p p o rt In te rv e n ti o n M an u al 40 MODULE 2 AN SW ER S - B EI NG A C AR ER • Le ss on 2 Take a look at the cartoons below. Do you understand this feeling? Select the right answer below. Happy 9 Angry Sad Scared 9 Happy Angry Sad Scared Happy Angry 9 Sad Scared Happy Angry Sad 9 Scared 5. Check your understanding Pay attention to reactions. 9 You look beautiful. 9 You are good at … 8 What are you doing?! Stop it! 8 You are very helpful. Thank you. 8 You are making a mess. 8 You should be ashamed of forgetting everything. 9 I love having you around. 8 You are driving me crazy. 9 You have a great smile. 6. Check your understanding Give compliments. iS u p p o rt In te rv e n ti o n M an u al 41 Did William respond well in the first example? 8 No Will wants to distract his sister’s attention because he knows she is missing her husband and will be sad to be reminded that he died. Although Will has the best intentions, ignoring her questions is not the right way to respond especially because his sister persists in asking. Did William respond well in the second example? 9 ✓Yes It is important to try different responses to identify the one which will cause the less distress. Initially William tried to distract his sister with no success. Today, by showing his sister pictures of her husband, they had a good conversation about him. MODULE 2 7. Check your understanding How to show compassion (1). 8. Check your understanding How to show compassion (2). AN SW ER S - B EI NG A C AR ER • Le ss on 2 iS u p p o rt In te rv e n ti o n M an u al 42 Why is this lesson important? Making decisions can become more difficult for a person living with dementia over time. How will this lesson help me? By practicing how to support a person living with dementia to make their own decisions for as long as possible or to assist in making decisions in the person’s best interest. What will I learn? 1. Why is support in decision-making needed? 2. How to make decisions in someone’s best interest? 3. How to support someone with dementia to make everyday decisions? 4. How to support someone with dementia to make everyday decisions as the dementia progresses? 5. How to support someone with dementia in making complex decisions? 1. Why is support in decision-making needed? Supporting someone with dementia to make their own decisions is very important. Like everyone else, people living with dementia have the right to participate in all decisions that affect their lives and wellbeing. However, making decisions may become difficult due to the progression of dementia. Sometimes this results in relatives taking over decision- making, instead of supporting people with dementia to make their own decisions. In this lesson, you will learn how you can support the person you care for when they need to make a decision. Lesson 3. Supported decision-making MODULE 2 Le ss on 3 . S up po rte d de cis io n- m ak in g iS u p p o rt In te rv e n ti o n M an u al 43 z Memory loss Having memory loss will cause someone with dementia to sometimes forget the information that is needed to make a decision. z Problems with thinking or difficulties identifying and describing what someone with dementia thinks When a person living with dementia has problems thinking or describing what they are thinking, it might be more difficult for them to make a decision and share it with you. z Problems with making complex decisions Complex decisions, such as deciding whether or not to go outside alone, can be more challenging, therefore support is important. MODULE 2 Le ss on 3 . S up po rte d de cis io n- m ak in g Everybody needs to make decisions, whether they are big or small. Because the person you care for has dementia, your support is needed to help them clarify what they want. Decisions in line with the interests, needs and wishes of the person you care for will make them more independent. Decision-making can be difficult Why do you think decision-making can be difficult for a person living with dementia? Have a look at the reasons below to find out more. 2. How to make decisions in someone's best interest? iS u p p o rt In te rv e n ti o n M an u al 44 MODULE 2 1. Activity Le ss on 3 . S up po rte d de cis io n- m ak in g Do you support the person you care for to make decisions? You may want to write down the ways that you support their decision-making: Think about your own situation z Making decisions will become more difficult as the dementia progresses. z Your support for the person you care for to make their own decisions is needed. z Enabling them to make their own decisions might not be easy because of their dementia. iS u p p o rt In te rv e n ti o n M an u al 45 It is important to encourage the person you care for to do whatever they are still able to do. Supporting them in making decisions will help them to be more independent. Supporting them in making decisions might also improve their self-esteem. Manuel has Alzheimer's disease and is married to Maria. Manuel always used to lay out his clothes for the next day in the evening. Now he has dementia, he forgets to do so and sometimes wears the same clothes everyday. Let's look at an example 3. How to support someone with dementia to make everyday decisions? MODULE 2 Le ss on 3 . S up po rte d de cis io n- m ak in g z It is important to encourage the person that you care for they continue doing whatever they are still able to do. z Supporting the person you care for in making decisions will help them be more independent. z Support the person you care for in making decisions may add to their self-esteem. Keep in Mind1. Check your understanding Support for making everyday decisions. What do you think is the best way to make sure that Manuel wears clean clothes, without taking over his decisions at the same time? „ Before Maria and Manuel go to bed, Maria asks Manuel what he wants to wear the next day. She then asks Manuel to lay them out. „ Maria chooses clothes for Manuel and she asks him to lay them out. „ Maria chooses clothes for Manuel in the morning and gives them directly to Manuel to wear. iS u p p o rt In te rv e n ti o n M an u al 46 4. How to support someone with dementia to make everyday decisions as the dementia progresses? Let's look at an example After some time, Manuel feels stressed when choosing his clothes for the next day with Maria. He starts to worry about everything else he needs to do the next day and becomes anxious. This makes it difficult for Maria to support Manuel in making his decision. MODULE 2 Le ss on 3 . S up po rte d de cis io n- m ak in g z Supporting someone with dementia in making their own choices is possible, even as dementia progresses. z It may help to simplify decisions by limiting the number of choices or discuss the situation at a better time when the person is in a better mood or less worried. Remember What should Maria do? Please check all the responses that you feel are appropriate. „ Instead of supporting Manuel to choose his clothes the evening before, she asks him in the morning, at the beginning of the day. „ Maria lays out Manuel’s clothes in the evening. „ When Maria asks Manuel what he wants to wear she can give him only a few choices and, for example, ask him whether he wants to wear his blue or black trousers. 2. Check your understanding Support for making decisions as the dementia progresses. iS u p p o rt In te rv e n ti o n M an u al 47 5. How to support someone with dementia to make complex decisions? There comes a time in the course of dementia when someone may not be able to make complex decisions anymore, such as decisions concerning medical treatment. MODULE 2 Le ss on 3 . S up po rte d de cis io n- m ak in g What should the doctor and Chrissy do? Multiple answers are correct. „ Mary says what she wants, so she does not need support in making the decision whether or not to start with the medication. „ The doctor says that she should take the medication because it is good for her health. „ The doctor explains that taking the medication is good for her health, because it will slow down further damage in her brain because of her dementia. „ Her daughter says: "Mom, you know that you are forgetting things and that you have difficulties to find the right words when you want to say something. By taking the medication these problems may slow down a bit." 3. Check your understanding Support for making complex decisions (1). Let's look at an example Mary has vascular dementia and is taken care of by her daugther Chrissy. The doctor advises Mary to start using medication for her blood pressure. Mary says that she does not want to take pills because she does not understand why she needs them. iS u p p o rt In te rv e n ti o n M an u al 48 MODULE 2 Le ss on 3 . S up po rte d de cis io n- m ak in g What do you think are reasons that Jack can no longer make the decision himself? Please check all the responses that you feel are appropriate. „ Jack is unable to understand the information that is relevant to making the decision. „ Jack does not agree with the doctor. „ Jack is unable to communicate his decision (by talking, using body language or any other means). „ Jack is unable to use or weigh the information as part of the decision-making process. 4. Check your understanding Support for making complex decisions (2). Let's look at another example Jack who has dementia lives with his wife, Ella. Jack’s condition deteriorates. Ella decides to make an appointment with the doctor without Jack to discuss his medical condition and to make a decision regarding his medication. Ella discusses the issue with Jack’s sister as well, who asks her what she thinks Jack would have decided before he was diagnosed with dementia. Ella talks to the doctor and tries to imagine what Jack would have decided if given all the information. iS u p p o rt In te rv e n ti o n M an u al 49 The capacity to make a decision may be affected by the following considerations: z The type of decision being made. Someone with dementia might still be able to choose what kind of clothes to wear, but perhaps not whether to take medicines. z Change over time. Imagine that Jack had a severe infection that made him very confused. After this infection is cured, he might be able again to decide whether or not to take the medication. z Can be difficult to assess. Sometimes it is not clear, in which case there is no other alternative other than to help the person living with dementia make a decision that is in their best interest. MODULE 2 Le ss on 3 . S up po rte d de cis io n- m ak in g z Someone with dementia can be involved in making complex decisions, such as medical decisions, with the right support. z Support for making complex decisions should focus on providing correct information to help the person you care for understand what the consequences of the decision are. Remember iS u p p o rt In te rv e n ti o n M an u al 50 You can make decisions in the best interest of a person living with dementia by taking the following aspects into account. z Their past and present wishes and feelings (and, in particular, any relevant statement written when they did not have dementia). z Beliefs and values that may have influenced the person’s decision when he or she did not have dementia. z The views of anyone named by the person you care for as someone to be consulted to help with making decisions. z Be aware that the best interest of the person you care for is not always the same as your own best interest or that of other family members. In the end, it is the best interest of the person you care for that counts, since the decision concerns them. z Take into account that someone’s past wishes can be different from their present ones. Preparing for decisions To prepare for decisions that you might have to make for the person living with dementia it is important to: z Gather the information you need to make informed choices for the person as early in the course of the disease as possible. z Talk about decisions with your family, friends, doctor and any others close to you to help with decisions that are important to you both. z Prepare instructions that accurately reflect the wishes of the person living with dementia, in accordance with your country’s law (advance directives), and inform each other and your doctor about your preferences and decisions concerning medical treatment. MODULE 2 Le ss on 3 . S up po rte d de cis io n- m ak in g Remember iS u p p o rt In te rv e n ti o n M an u al 51 Think of the following choices when you prepare instructions that accurately reflect the wishes of the person you care for. MODULE 2 Le ss on 3 . S up po rte d de cis io n- m ak in g 2. Activity z Where does the person you care for prefer to live if it is no longer possible to stay at home? z What aspects of home/community/facility care are important to the person you care for? z Who does the person you care for want in charge of their finances when they are no longer capable of doing it? z How does the person you care for want to be treated at the end of their life? z Are there medical treatments that the person you care for wants to receive or refuse? z What does the person you care for want when eating is no longer possible? Would they want to get a feeding tube? z Does the person you care for have any particular fears or concerns about medical treatments? iS u p p o rt In te rv e n ti o n M an u al 52 You finished this lesson, well done! MODULE 2 Le ss on 3 . S up po rte d de cis io n- m ak in g iS u p p o rt In te rv e n ti o n M an u al 53 9 ✗Before Maria and Manuel go to bed, Maria asks Manuel what he wants to wear the next day. She then asks Manuel to lay them out. This is the right answer! This way Manuel is encouraged to do the things he is still able to do. 9 Maria chooses clothes for Manuel and she asks Manuel to lay them out. This answer is okay. It is good that Manuel is encouraged to lay out his clothes himself; however, it would have been better if Maria supported Manuel in making his own decision about what to wear. What do you think is the best way to make sure that Manuel wears clean clothes, without taking over his decisions at the same time? 8 Maria chooses clothes for Manuel in the morning and gives them directly to Manuel to wear. This is not a good option. Maria is taking control away rom Manuel. It would be better if she supported him in making his own decision and encouraged him to do the things which he is still able to do, such as laying out the clothes. MODULE 2 ANSWERS - BEING A CARER Lesson 3. Supported decision-making 1. Check your understanding Support for making everyday decisions. AN SW ER S - B EI NG A C AR ER • Le ss on 3 iS u p p o rt In te rv e n ti o n M an u al 54 What should Maria do? 9 Instead of supporting Manuel in choosing what he wants to wear in the evening for the next day, she asks him in the morning at the beginning of the day. Correct! Maria still supports Manuel in deciding what he wants to wear, but he will not start to worry the evening before. 8 ✗Maria lays out Manuel’s clothes in the evening. This is not a good option. Maria is deciding for Manuel, while he still might be able to make his own decisions. 8 When Maria asks Manuel what he wants to wear in the evening she can give him only a few choices and, for example, ask him whether he wants to wear his blue or black trousers. In some cases this might be a good option. Even though Maria decides which trousers Manuel should wear the next day, Manuel can still make the final decision himself. However, in this case it might not be the best thing to do, because it might not solve the problem that Manuel will worry about the next day. MODULE 2 ANSWERS - BEING A CARER Lesson 3. Supported decision-making 2. Check your understanding Support for making decisions as the dementia progresses. AN SW ER S - B EI NG A C AR ER • Le ss on 3 iS u p p o rt In te rv e n ti o n M an u al 55 8 ✗Mary says what she wants, so she does not need support in making the decision whether or not to start the medication. This is not correct. Since Mary has dementia, we are not sure whether or not she understands why she needs the medication and what the consequences of taking or not taking the medication might be. 8 ✗✗The doctor says that she should take the medication because it is good for her health. Incorrect. Although it is true that the medication will be good for her health, the doctor is telling Mary what to do, which is not so good. What should the doctor and Chrissy do? Multiple answers are correct. 9 The doctor explains that taking the medication is good for her health because it will slow down damage to her brain resulting from her dementia. This is right! Her doctor’s explanation allows Mary to understand the importance of taking the medication and will enable her to make an informed decision. 9 Her daughter says: “Mom, you know that you are forgetting things and that you have difficulties to find the right words when you want to say something. By taking the medication these problems may slow down a bit.” Correct! Using different words to explain the possible reasons for taking the medication might help Mary understand why taking the medication would be beneficial for her. MODULE 2 ANSWERS - BEING A CARER Lesson 3. Supported decision-making 3. Check your understanding Support for making complex decisions (1). AN SW ER S - B EI NG A C AR ER • Le ss on 3 iS u p p o rt In te rv e n ti o n M an u al 56 9 ✗Jack is unable to understand the information relevant for the decision. 8 ✗Jack does not agree with the doctor. 9 ✗Jack is unable to communicate his decision (by talking, using body language or any other means). 9 ✗Jack is unable to use or weigh the information as part of the decision-making process. What do you think are the reasons that Jack can no longer make the decision himself? Multiple answers are correct. MODULE 2 ANSWERS - BEING A CARER Lesson 3. Supported decision-making 4. Check your understanding Support for making complex decisions (2). AN SW ER S - B EI NG A C AR ER • Le ss on 3 iS u p p o rt In te rv e n ti o n M an u al 57 1. The importance of involving family and friends It might be difficult to involve others caring for the person living with dementia. You could think that others will not be able to provide care as well as you can, that they do not have time or might say ‘no’ when asked for help. As time progresses, the person you care for will need more and more help with daily activities. Therefore, it is important to involve others so that the tasks can be shared. It can also be helpful to have someone to talk to who understands your situation and feelings. Do not wait too long, since help early on will allow you to continue providing care to your family member or acquaintance in the long term. Why is this lesson important? Sharing caregiving responsibilities with other people will help you to continue providing care in the long term. How will this lesson help me? By practicing the skill ‘asking for help’. What will I learn? 1. The importance of involving family and friends. 2. Types of help and support that you might need. 3. Effectively asking for help from others. MODULE 2 Le ss on 4 . I nv ol vin g ot he rs Lesson 4. Involving others iS u p p o rt In te rv e n ti o n M an u al 58 2. Types of help and support that you might need First let’s look at an example to find out whether Li, David and Fatima are receiving help, and if so, what kind of help. z Li takes care of her mother who has dementia. She receives no help from others. She spends a lot of time taking care of her mother and feels overwhelmed. She would like to get some help from others. z David takes care of his wife who has dementia. David has involved his two sisters in the care. The sisters regularly take his wife out for shopping or help clean the house. z Fatima takes care of her husband who has dementia. Fatima receives help from her family, friends and neighbours. Some helpers assist with shopping or cleaning the home, others take her husband for a walk or just listen to the difficulties she has with his memory loss. z Friends: Mohammed is always there to listen when I need it. The types of help and support that Fatima receives are presented below. Practical help z Family: once a month my sister helps with cleaning the house. z Friends: once a week my friend Hiba comes over to help with shopping and cooking. z Family: several family members take my husband out for a walk on a regular basis. Help with pleasant activities Emotional support MODULE 2 Le ss on 4 . I nv ol vin g ot he rs z Acquaintances/neighbours: my neighbours help to find information on dementia. Providing information iS u p p o rt In te rv e n ti o n M an u al 59 What kind of help do you receive? Please write down the types of help that you receive in the spaces below. If the help you receive is not listed below, use the ‘Other help’ box at the end to fill in your answer. Do your family, friends, neighbours or others provide: Practical help? Emotional help? Help with pleasant activities? 1. Activity MODULE 2 Le ss on 4 . I nv ol vin g ot he rs iS u p p o rt In te rv e n ti o n M an u al 60 Information? Other help? 1. Activity Keep in mind that sharing care tasks is common. It may allow you to do something pleasant for yourself, run an errand without having to bring the person you care for, or just enjoy a well-deserved break. Tip MODULE 2 Le ss on 4 . I nv ol vin g ot he rs iS u p p o rt In te rv e n ti o n M an u al 61 Your own support network Take a look at your own network as stated in the previous pages, what do you see? Please select the response that applies to the help that you receive. „ I receive help in one category. It is very good that you are already involving others. You might want to receive help in other ways too. Think about people who might be able to help you. „ I receive help in more than one category. It is very good that you are already involving others in caring for your family member or acquaintance. If needed, you can ask for help from other people as well. Perhaps the examples helped you identify people you had not considered before. „ I do not receive help. Keep in mind that providing care can be difficult. Think about ways to involve others in sharing the tasks. Remember that you do not know whether people will want to help unless you ask. It can be difficult to find help if you don’t have family nearby or live in a rural or isolated area, or if your family refuses to help. Think about alternatives such as your faith community, contacting your doctor for advice, or your national / local dementia association. 2. Activity MODULE 2 Le ss on 4 . I nv ol vin g ot he rs iS u p p o rt In te rv e n ti o n M an u al 62 What would you like to get more help with? Before you ask someone for help, it is important to know what it is you would like to ask. It can help to make a wish list of your needs. Let’s first have a look at Li, David and Fatima. You can see their wish lists below. Li I would like one evening for myself to do a hobby or activity. I would like help with cleaning the house. David I would li ke to hav e someone I can talk to about my feelings. Fatima I would like to get into contact with other carers to share my experiences and receive tips. MODULE 2 Le ss on 4 . I nv ol vin g ot he rs iS u p p o rt In te rv e n ti o n M an u al 63 Make a list of wishes that seem achievable Wish 1 Wish 2 Wish 3 What is on your wish list? Make your own wish list for the help or support that you would like to receive. Wishes could be for example: z I would like help with bathing the person I care for. z I would like advice on how to deal with the person I care for. z I would like adjustments to be made in my home to accommodate the care needs of the person I care for. List those wishes that you think are achievable. If you know beforehand that you might not be able to achieve a certain wish, it might be better to list a different wish that is more attainable. For instance, Li would prefer to hire someone to clean the house every week. However, Li cannot afford this and realizes that her wish is not realistic. She could hire someone to clean the house once every two weeks or ask someone who she does not need to pay, such as a friend or relative. She can ask the person to clean the whole house, or to help with specific tasks that are difficult for her, such as cleaning the floors. 3. Activity MODULE 2 Le ss on 4 . I nv ol vin g ot he rs iS u p p o rt In te rv e n ti o n M an u al 64 Now it is time to think about who could help. Some people have no problem asking for help, other people are not used to it but do not mind giving it a try. There are also people who find it very difficult to ask for help. The next section will teach you skills to ask for help effectively. Keep in mind your support wish list. 3. Effectively asking for help from others If you would like to ask others for help it is important to do so in an effective way. This means that you should be able to talk to others about your thoughts, feelings and experiences. It also means that you stand up for yourself. Things that will help you to effectively ask for help: z Think about what you want or need and what your feelings are about the current situation. z Describe your problem in one or two sentences. z Describe your thoughts and feelings clearly, so that the other person can understand your point of view. Who can I turn to? z Be honest and direct. z Keep the feelings of the other person in mind. z Give detailed information about what kind of help you need. z Be flexible: maybe you won’t get exactly what you asked for, but you will get something that will be helpful. z Break it down into smaller parts – it’s usually easier for people to say yes to a little request than to a big one. z If you reach a point where you do not know what to do anymore: take a break – go back to the discussion at a future time. For example: agree to think about it and talk again tomorrow afternoon. z If appropriate, offer to do the task together first. z Don’t give up. It may take many attempts before things change. z Asking for help will not always lead to the result you want, but it is important that you feel able to ask for it. MODULE 2 Le ss on 4 . I nv ol vin g ot he rs iS u p p o rt In te rv e n ti o n M an u al 65 „ Li tells her sister that she wants to take care of their mother, but that she just needs a short break from caregiving during the week. She says: “I would like to discuss how you could help in a way that is possible for you.” Which of the following examples represents an effective way to ask for help? Please check the one response that you think is correct. She knows who to turn to for help and decides to ask her sister. Li would like to have an evening to herself once a week. She tries to ask for help in three different ways. Let’s have a look at Li again „ Li decides to attend a weekly one-hour class in the evening to have a break from providing care. However, she does not discuss with her sister the importance of having a break during the week. When she asks her sister to take care of their mother for an hour, her sister said: “Sorry, I have no time.” Li cancels her class. „ Li approaches her sister by saying, “I’m sick and tired of you not doing anything! You never have time to help me care for our mother!” 1. Check your understanding Asking for help effectively. MODULE 2 Le ss on 4 . I nv ol vin g ot he rs iS u p p o rt In te rv e n ti o n M an u al 66 Your own plan to involve others Make your own plan to involve others in caring for your family member or acquaintance with dementia. Now think of your wishes and who you can turn to for help. Imagine yourself in a situation in which you will ask for help. Please answer the following questions in the boxes below. Who would you like to ask for help? What would you like to say? What would you do if the person does NOT want to help? What would you do if the person does want to help? 4. Activity MODULE 2 Le ss on 4 . I nv ol vin g ot he rs iS u p p o rt In te rv e n ti o n M an u al 67 You finished this lesson, well done! MODULE 2 Le ss on 4 . I nv ol vin g ot he rs iS u p p o rt In te rv e n ti o n M an u al 68 MODULE 2 AN SW ER S - B EI NG A C AR ER • Le ss on 4 9 Example 1 Passive. This is not an effective way of asking for help. Her sister may not be aware that Li is feeling overwhelmed. Li is not being honest about her feelings and is trying to avoid a conflict with her sister. She does not stand up for herself. It is a passive way of asking for help. 8 Example 2. Aggressive. This is not an effective way of asking for help. Li becomes angry. However, her sister may not be aware that Li is feeling overwhelmed, because she did not clearly mention this. She does not approach her sister in a respectful way. It is an aggressive way of asking for help. Which of the examples is an effective way to ask for help?✗ 9 Example 3 Effective. This is an effective way of asking for help. Li stands up for herself, says what she is thinking and is honest about her need for a regular break. She also keeps the interests of her sister in mind. 1. Check your understanding Asking for help effectively. ANSWERS - BEING A CARER Lesson 4. Involving others M od ul e 3 . C ar in g fo r m e CARING FOR ME Lesson 1. Reducing stress in everyday life Lesson 2. Making time for pleasant activities Lesson 3. Thinking differently 3 MODULE iS u p p o rt In te rv e n ti o n M an u al 70 Why is this lesson important? It is important to take care of yourself while caring for another person. This lesson will help you to keep providing care. How will this lesson help me? This lesson helps to reduce stress and renew your energy with exercises that do not take much time. What will I learn? 1. The importance of relaxing. 2. Different ways to relax: z basic breathing; z mindful breathing; z neck movements; z number counting; z imagery; z total stretching; z muscle relaxation. 3. Relaxing at any time and any place. MODULE 3 Le ss on 1 . R ed uc in g st re ss in ev er yd ay lif e Lesson 1. Reducing stress in everyday life iS u p p o rt In te rv e n ti o n M an u al 71 1. The importance of relaxing Let’s look at an example Diana: no time, no energy Diana takes care of her husband Dan who has dementia. She feels increasingly tense. A friend advises her to try to relax and not ask too much of herself. Diana tells her friend that she does not have the time or energy to relax. Her friend explains that there are ways to relax that do not take much time, and that relaxing might give Diana renewed energy that could help her get tasks done more easily. Diana succeeds in relaxing Diana decides to follow her friend’s advice and tries the breathing exercise her friend showed her. When Diana sees her friend again she says: “Thank you for the good advice. Although I still have a lot to do, I feel less tense.” Diana decides to do the breathing exercise every time she is feeling tense. Relaxation: z makes you feel less tense; z might give you renewed energy; z may make it easier to get tasks done; and z does not have to take much time. MODULE 3 Le ss on 1 . R ed uc in g st re ss in ev er yd ay lif e Reminder iS u p p o rt In te rv e n ti o n M an u al 72 2. Different ways to relax There are different ways you can relax. Try and see which one(s) suit you best. Before you try an exercise ask yourself: “How tense am I feeling”? After the exercise, ask yourself again. This might help you understand whether this type of relaxation helps you feel less tense. In this lesson you will find seven relaxation exercises. The first three exercises will take only a few minutes (i.e. 5 minutes max.). The other exercises will take a little longer (i.e. 10-15 minutes max.). Use the scale below of 1-10 and tick what number describes how tense you are feeling now, 1 is very small amount of tension and 10 is very high amount of tension. VERY SMALL VERY HIGH 1 42 53 6 7 8 9 10 MODULE 3 Le ss on 1 . R ed uc in g st re ss in ev er yd ay lif e Focusing on your breathing is relaxing. By doing a breathing exercise you could reduce tension. This exercise will take: less than 5 minutes. Caution: if you experience difficulty breathing, this exercise might not be the best option for you. This is how you do it: z When sitting down, sit up straight in your chair with your back against the back of your chair. z When standing, stand up straight. z Put both of your feet flat on the surface. z Focus on your breathing. z Keep breathing like you are used to. z Try to feel how you breathe. Put your hand on your stomach to feel how you inhale and exhale. z Exhale from your mouth and pull in your stomach as much as possible. z Follow your breathing in this manner a couple of breaths and then stop the exercise. 1. Relaxation activity - Basic breathing iS u p p o rt In te rv e n ti o n M an u al 73 This exercise will help you feel calm and reduces stress. You will breathe with your stomach according to a rhythm. This exercise will take: 5 minutes. This is how you do it: z Sit straight in a chair and make sure your face and shoulders are relaxed. z Bring your hands to your stomach and breathe into it. z Breathe in for 4 counts and out for 8 counts, at a comfortable pace. z Your stomach should expand with each inhale and contract with each exhale. z Return to your normal breathing and spend one minute just observing yourself breathing and noticing how you feel. z Practice listening to your own thoughts without negative judgement. z If your mind wanders, refocus on breathing and meditation. With this exercise you will feel less tension in your neck. It will also increase the blood flow to your brain. This exercise will take: 5 minutes. This is how you do it: z Make sure to move slowly and with attention. z Bend your neck forward and backward. z Inhale while you lift your head up and back. Exhale while you drop your chin to your chest. z Rotate your chin from side to side. z Inhale when your chin is in the centre. Exhale when you look to the side. z Drop your ear towards your shoulder. z Inhale when you are in the centre. Exhale when you drop your ear to your shoulder. z Repeat 5 times. Relaxation exercise - Neck movements MODULE 3 2. Relaxation activity - Mindful breathing 3. Relaxation activity - Neck movements Le ss on 1 . R ed uc in g st re ss in ev er yd ay lif e iS u p p o rt In te rv e n ti o n M an u al 74 This exercise will take: 5 minutes. This is how you do it: z Sit or lie down comfortably in a quiet place. z Breath slowly. z With each breath, take at least 3 seconds to breathe in and 6 seconds to breath out. z Focus on your breathing and your lower stomach when you breathe until you feel calm and peaceful inside your heart and mind. z Say the word ‘relax’ whenever you breathe out. z Tell yourself that you will start counting down from 20 to 1. You can relax by focusing on your breathing and counting back from 20 to 1. z Tell yourself that you will double your level of relaxation for each and every count, and will be totally relaxed when you reach 1. z Start counting down from 20 to 1 slowly. Say the word ‘relax’ whenever you count (that is, take a deep breath, say ‘20’, breathe out slowly and say ‘relax’, take a deep breath, count ‘19’, breathe out slowly and say ‘relax’, and so on). z Now repeat this exercise but with your eyes closed. Relaxation exercise - Number counting MODULE 3 4. Relaxation activity - Number counting Le ss on 1 . R ed uc in g st re ss in ev er yd ay lif e iS u p p o rt In te rv e n ti o n M an u al 75 You can relax by imagining you are in a place or surrounded by people and things you like. This exercise will take: 5 minutes. Before completing this exercise, take a look at the helpful guidelines below. z Only imagine places, people and things you like. z Imagine what you can hear, feel, smell, and/or taste if you were in that place. z Try to think of very specific details of the place, thing or person. For example, how does the surface of the thing feel and how does it smell? Now try to relax while imagining that you are in a place or with the people or things that you like. This is how you do it: z Sit or lie down comfortably in a quiet place. z Breathe slowly. z With every breath, take at least three seconds to breathe in and at least six seconds to breathe out. z Focus on your breathing and your lower stomach when you breathe until you feel peaceful inside. z Imagine you are in a place or surrounded by things or people you like. z Now do this exercise again but close your eyes. MODULE 3 5. Relaxation activity - Imagery Le ss on 1 . R ed uc in g st re ss in ev er yd ay lif e iS u p p o rt In te rv e n ti o n M an u al 76 This exercise is particularly helpful when your muscles feel tense. This exercise will help you relax by tensing and relaxing your muscles. This exercise will take: 10-15 minutes Caution: if you have any injuries or any other physical limitations, this may not be the best exercise for you. Try one of the other exercises. Below are some general instructions for you to keep in mind. z When you are ready to begin, tighten the muscle group described. Make sure that you can feel the tension, but no pain. Keep the muscle tensed for approximately 5 seconds. z Relax the muscles and keep it relaxed for approximately 10 seconds. It may be helpful to say ‘relax’ as you relax the muscle. z When you have finished the muscle relaxation, remain seated for a few moments allowing yourself to become alert. This is how you do it: z Right hand and forearm: make a fist with your right hand. Hold for 5 seconds and then relax for 10 seconds. Don’t forget to breathe. It might be helpful to inhale while tensing your muscles and exhale while relaxing your muscles. Do the same for your left hand and forearm. z Right upper arm: bring your right forearm up to your shoulder to ‘make a muscle’. Hold for 5 seconds and then relax for 10 seconds. Do the same for your left upper arm. z Forehead: raise your eyebrows as high as they will go, as though you were surprised by something. Hold for 5 seconds and then relax for 10 seconds. z Eyes and cheeks: squeeze your eyes closed. Hold for 5 seconds and then relax for 10 seconds. z Mouth and jaw: open your mouth as wide as you can, as if you are yawning. Hold for 5 seconds and then relax for 10 seconds. MODULE 3 6. Relaxation activity - Muscle relaxation Le ss on 1 . R ed uc in g st re ss in ev er yd ay lif e Please continue the exercise on the following page. iS u p p o rt In te rv e n ti o n M an u al 77 z Neck: be careful as you tense these muscles. Face forward and then pull your head back slowly, as though you are looking up to the ceiling. Hold for 5 seconds and then relax for 10 seconds. z Shoulders: tense the muscles in your shoulders as you bring them up towards your ears. Hold for 5 seconds and then relax for 10 seconds. z Hips and buttocks: squeeze the muscles in your buttocks. Hold for 5 seconds and then relax for 10 seconds. z Right upper leg: tighten your right thigh. Hold for 5 seconds and then relax for 10 seconds. Repeat for your left upper leg. z Right lower leg: do this slowly and carefully to avoid cramps. Pull your toes towards you to stretch the calf muscle. Hold for 5 seconds and then relax for 10 seconds. Repeat for your left lower leg. z Right foot: curl your toes downwards. Hold for 5 seconds and then relax for 10 seconds. Repeat for your left foot. MODULE 3 6. Relaxation activity - Muscle relaxation (continued) Le ss on 1 . R ed uc in g st re ss in ev er yd ay lif e iS u p p o rt In te rv e n ti o n M an u al 78 Stretching your muscles can help to decrease tension. Stretching exercises are very convenient since you can do them anywhere and anytime. This exercise will take: 10 minutes. This is how you do it: z Stand up, or do this exercise in your chair. z Take a deep breath, all the way down to the bottom of your stomach, and slowly let it out. z As you exhale, feel the tension drain from your body. z Take one more breath and hold it for a moment… and let it out slowly. z With each breath you are becoming more and more relaxed. z Now, gently reach your arms out to the sides as though you were trying to touch the walls. z Relax your shoulders and stretch yourself a little. z Gently reach your arms out in front of you. z Feel the muscles in your back and shoulders loosen up. z Stretch out in front a little further. z And now reach up as high as you can. z Push up your arms towards the sky, as if you were trying to reach the sun. z Again, reach your arms out to the sides as though you were trying to touch the walls, as though you were trying to push them outwards. z Reach out in front of you. z Feel your muscles in your back and shoulders become looser and less tense. z Reach towards the sky one more time. z Reach as high as you can. z Try to touch the sun. z Lower your arms to your sides. MODULE 3 7. Relaxation activity - Total stretching Le ss on 1 . R ed uc in g st re ss in ev er yd ay lif e Please continue the exercise on the following page. iS u p p o rt In te rv e n ti o n M an u al 79 z Now, roll your shoulders back. z Feel the tension drain form your body. z Roll your shoulders back again. One more time roll your shoulders. z Now roll them forward. Forward again. One more time forward. z Now shrug your shoulders, lifting them up and then pushing them down. Shrug your shoulders again. Shrug them one more time. z Now another deep and refreshing breath and exhale all of the tension in your body. z Take one more breath…and exhale letting go of any remaining tension. MODULE 3 7. Relaxation activity - Muscle relaxation (continued) Le ss on 1 . R ed uc in g st re ss in ev er yd ay lif e iS u p p o rt In te rv e n ti o n M an u al 80 You can take some time to relax at any time of the day and in any place. Let’s look at an example Diana: relaxing while waiting in line Diana often feels tense when there is a long line in the store, as she is aware she still has many other things to do. She decides to do the breathing exercise while waiting in line. Afterwards, she feels less tense. You can also plan a specific time to relax, for example every day after lunch. You can choose what suits you best. If necessary, you can use a reminder to make sure that you do not forget to take some time to relax. 3. Relaxing at any time and any place z You can take some time to relax anywhere and at any time of the day. z Set a goal: try to do a relaxation exercise at least once a day. z You can plan a specific time to relax every day (if necessary, use a reminder). z You will benefit from having renewed energy and a better mood after doing the relaxation exercises. z Even a brief exercise can make a difference! z You will also be able to reduce feelings of tension and continue caring for your family member or acquaintance over the long term. MODULE 3 Keep in Mind Le ss on 1 . R ed uc in g st re ss in ev er yd ay lif e iS u p p o rt In te rv e n ti o n M an u al 81 Was this helpful for you? If not, there might be different reasons why relaxation was not helpful to you: z Perhaps you could not focus on relaxing. z Try again at another time! z Maybe you like an exercise, but you need some more practice to really benefit from it. Try to do this exercise regularly. z The exercise you chose may not have suited you. Try a different exercise! z The exercise you chose was too short. z Try this exercise again or do another one! If the exercises are still not helping you after these tips, try to do an activity you enjoy. Have a look at Lesson 2. Making time for pleasant activities in this module to find out which activities you may enjoy. MODULE 3 Le ss on 1 . R ed uc in g st re ss in ev er yd ay lif e You finished this lesson, well done! iS u p p o rt In te rv e n ti o n M an u al 82 1. The importance of pleasant activities Pleasant activities are important because caregiving can last a long time and doing pleasant activities can help you to relax and continue providing care. Pleasant activities can be small things such as going for a walk or talking to a friend. This may not always be easy, because providing care can be time- consuming and someone might have to take over the care for your family member or acquaintance while you are not there. Let’s see how Amy, Jose, and Umit experience caregiving and the importance of planning pleasant activities. Amy Amy takes care of her mother who is living with dementia. She dedicates most of her time to caregiving and rarely takes time for herself. She does not engage in any pleasant activities. Amy notices that recently she is more tired than usual and feels that she is not able to care for her mother as she did before. Why is this lesson important? It is important to take care of yourself while caring for another person. This lesson will help you to keep providing care. How will this lesson help me? This lesson will help you to take time for yourself and do pleasant activities to relax. What will I learn? 1. The importance of pleasant activities. 2. Barriers to doing pleasant activities. 3. Making pleasant activities achievable. 4. Doing pleasant activities together. MODULE 3 Le ss on 2 . M ak in g tim e f or p lea sa nt ac tiv iti es Lesson 2. Making time for pleasant activities iS u p p o rt In te rv e n ti o n M an u al 83 Jose Jose takes care of his brother who is living with dementia. Jose does not get a lot of sleep and rarely has time for afternoon naps. He recently started asking his sister to come by and help with caregiving so he can take a nap and read a magazine each afternoon. Umit Umit takes care of his wife who is living with dementia. Recently, he has hired a professional carer who stops by three times a week to help him care for her. When the professional carer is there, Umit reads the newspaper or goes for a walk. z If you are not able to make time for yourself, you can get very tired which may make you less able to continue providing care. z You can ask family and friends to help care for the person living with dementia so that you can take some time for yourself. z If it is affordable, you could hire a professional carer to help you care for your family member or friend so you can take some time for yourself. MODULE 3 Keep in Mind Le ss on 2 . M ak in g tim e f or p lea sa nt ac tiv iti es iS u p p o rt In te rv e n ti o n M an u al 84 Which pleasant activities would you like to do? Once you have some time for yourself, it can be hard to think of the things you would like to do. There are many possibilities and even in a short amount of time, you can still do an activity that you like. In this exercise you will make a list of pleasant activities that you would like to do. Please check at least two activities that you would like to do more often. If your favourite activity is not listed below, use the ‘other’ box to write your own activity. „ Do a crossword puzzle „ Watch TV „ Visit friends or family „ Cook „ Listen to music „ Do crafts „ Read „ Take a nap „ Go shopping „ Take a walk „ Exercise „ Other: 1. Activity MODULE 3 Le ss on 2 . M ak in g tim e f or p lea sa nt ac tiv iti es iS u p p o rt In te rv e n ti o n M an u al 85 2. Barriers to doing pleasant activities Let’s go back to Amy’s example Amy dedicates most of her time to caring for her mother who has dementia. She does not receive any help and is tired all the time. She is struggling to care for her mother and has stopped doing the things she likes because she feels that she does not have enough time. Eventually, Amy is so tired that she decides to ask her friend for help. She is now able to make some time for herself and engage in pleasant activities. Amy feels more energized afterwards. She also feels that she is better able to handle the care for her mother as a result. Other reasons you may feel unable to do pleasant activities Not having time was the reason that Amy did not feel as though she could do any pleasant activities. However, there are several other reasons. MODULE 3 Le ss on 2 . M ak in g tim e f or p lea sa nt ac tiv iti es iS u p p o rt In te rv e n ti o n M an u al 86 Do you recognize any of the following? Please select any that may apply to you. „ No time. You might feel that you are too busy and not able to find any spare time. It is really important that you try to make some time during the day or in the evening to do something you enjoy. If you have little time, there are some pleasant activities that do not take up a lot of time and which you can fit in around your day. „ No energy. You might have less energy because caregiving can be tiring. Although it is hard to imagine, it is likely that you will feel more energized after doing something you like. „ No money. You might think that you have to spend lots of money to do something pleasant. Pleasant activities do not have to be costly. You can keep the activities as simple as you want them to be. For example, things like meeting a friend for a cup of tea or going for a walk by yourself do not cost money. „ Not in the mood. You might not feel like doing pleasant activities. Although it is hard to imagine, it is likely that your mood will be better after doing something you like. On the other hand, not doing pleasant activities will likely worsen your mood. „ Physical limitations. You might think that if you have physical limitations, you are not able to do a pleasant activity. If you have physical limitations, think of activities that you can do despite your limitations. There are many possibilities, such as reading, playing a game or talking to a friend. „ Guilt. You might feel guilty because you will feel that you are running away from the person you care for. You need time to do things you like, relax and recharge so that you can provide adequate care for them. Being a good carer means taking care of yourself as well. 2. ActivityMODULE3 Le ss on 2 . M ak in g tim e f or p lea sa nt ac tiv iti es iS u p p o rt In te rv e n ti o n M an u al 87 Suggestions for doing pleasant activities z Consider asking someone to help you with some of your day-to-day tasks. z Consider the impact of not doing certain tasks at that moment. For example, what is the impact of not cleaning the house every day? You may realize that you can be more flexible and have more time as a result. z Try to do one activity at a time and finish the things you have started as much as possible. If you leave something unfinished, it may make you feel dissatisfied. You may not be able to focus entirely on your next activity. You could feel more energized if you complete an activity before taking on another. z Think about ways to better manage your time. Consider using an agenda or calendar. z Talk to someone about how you might be able to better manage your time. Seeking another opinion or suggestions may be helpful. MODULE 3 Le ss on 2 . M ak in g tim e f or p lea sa nt ac tiv iti es Consider asking for help. iS u p p o rt In te rv e n ti o n M an u al 88 Now rate how achievable it would be for you to do the pleasant activities that you chose earlier in this lesson (see the exercise on page 16). 3. Making pleasant activities achievable Read every activity and consider whether the activity is: 1. unachievable; 2. unlikely to be achievable; 3. somewhat achievable; 4. achievable; 5. very achievable. Please check at least two activities that you would like to do more often. If your favourite activity is not listed below, use the ‘other’ box to write your own activity. „ Do a crossword puzzle „ Watch TV „ Visit friends or family „ Cook „ Listen to music „ Do crafts „ Read „ Take a nap „ Go shopping „ Take a walk „ Exercise „ Other: MODULE 3 3. Activity Le ss on 2 . M ak in g tim e f or p lea sa nt ac tiv iti es Unlikely to be achievable Somewhat achievable Achievable Very achievableUnachievable iS u p p o rt In te rv e n ti o n M an u al 89 4. Doing pleasant activities together It can be very rewarding to do pleasant activities with the person that you care for. However, it might be difficult at first to think of pleasant activities that are suitable for both of you. In this exercise we will make a list of the pleasant activities that you can do with the person you care for. First, take a look at Jose’s experience from the previous exercise. Jose Jose takes care of his brother who is living with dementia. In addition to taking a nap while his sister takes care of his brother, Jose takes his brother out for walks around the neighbourhood. His brother enjoys the walks and Jose is also able to get some exercise and fresh air. Which of your activities can you do today? It is a good idea to start with your pleasant activities as soon as possible and incorporate them into your routine. Which of your activities can you do today? If it is inconvenient to start an activity today, think about the pleasant activities you could do tomorrow. Start with small goals and add more pleasant activities after you feel successful with your first try. Rethink the activities that you would like to do to help make them more achievable. z Pleasant activities should be achievable. z There are different reasons why you can feel that pleasant activities are not achievable. z There are ways to undertake pleasant activities despite these reasons. Remember MODULE 3 Le ss on 2 . M ak in g tim e f or p lea sa nt ac tiv iti es iS u p p o rt In te rv e n ti o n M an u al 90 Please select at least one activity that you would like to do together more often. If an activity is not listed below, use the ‘other’ box at the bottom of the list to add the activity that you would like to do. Keep in mind that despite the challenges, pleasant activities are good for you and are necessary to ensure that you are able to keep providing care to your family member or acquaintance. What would you like to do more often? Take a look at the list on the next page for examples that you can do with the person that you care for. „ Listen to music „ Play a musical instrument „ Take a relaxing walk „ Listen to or read stories, newspaper articles, poems, etc. „ Go out to eat together „ Cook and prepare snacks „ Watch birds or animals „ Do handiwork or crafts „ Look at photos „ Watch the clouds or explore nature „ Recall and discuss happy memories „ Have friends over to visit „ Other: Activity MODULE 3 Le ss on 2 . M ak in g tim e f or p lea sa nt ac tiv iti es iS u p p o rt In te rv e n ti o n M an u al 91 MODULE 3 Le ss on 2 . M ak in g tim e f or p lea sa nt ac tiv iti es You finished this lesson, well done! iS u p p o rt In te rv e n ti o n M an u al 92 Why is this lesson important? Your thoughts determine how you feel. Unhelpful thoughts can make us feel bad. How will this lesson help me? This lesson will help you think differently and change your unhelpful thoughts into helpful ones. What will I learn? 1. Thoughts determine how we feel. You cannot change what happens, but you can change your response. 2. Learn to think differently by changing unhelpful thoughts into helpful ones. 3. Thinking differently makes you feel better. 1. Thoughts determine how we feel There are different ways to deal with stressful events. One way is to think differently. Let’s look at an example. MODULE 3 Le ss on 3 . T hi nk in g di ffe re nt ly Lesson 3. Thinking differently It is not an event that makes you feel angry, sad, happy or guilty, it is how you think about it. An event can be anything. Here are a few examples: z The person you care for becomes angry when you ask him/her something. z Your family member who promised to help you does not turn up or cancels on you. z The person you care for cannot find something. z Your family member is blaming you for not providing the right care. Many people think that their feelings are a direct consequence of an event. However, it is the way that you think about the event that determines how you feel. iS u p p o rt In te rv e n ti o n M an u al 93 What do you think Jo should do? Please check all the responses that you feel are appropriate. „ Tell Max that she cannot help him search now and leave. „ Search for the keys until she finds them. „ Tell Max that he should be more careful not to lose his keys in the future. „ Think to herself, “Max has dementia and is sometimes worried when he loses things. I can take some time to help and then go.” Then call her friend and explain that she will come later. MODULE 3 1. Check your understanding Feelings and thoughts. z There are many different ways of dealing with events. z Negative thoughts can make us feel bad. z By thinking differently, you might feel better and be able to better deal with events. Keep in mind Le ss on 3 . T hi nk in g di ffe re nt ly Lost keys Jo is married to Max who is living with dementia. She is about to leave the house to visit a friend. Max says, “I can’t find my keys! You cannot leave me without keys!” Jo thinks to herself: “I cannot leave him alone anymore.” She starts to feel miserable. iS u p p o rt In te rv e n ti o n M an u al 94 Jo thinks to herself when Max cannot find his keys: “I cannot leave Max alone anymore.” This makes her feel miserable. This means that Jo is thinking in an unhelpful way. Unhelpful thoughts can make it harder to respond in useful ways to situations like this. Instead, Jo could think: “Max has dementia and is sometimes worried when he loses things. I can take some time to help and then go.” This different way of thinking will probably make Jo feel better and help her stay calm and compassionate. Helpful thoughts can make it easier to respond in useful ways to situations like these. Jo’s unhelpful and helpful thoughts z It is not the event itself that makes you feel angry, sad, happy or miserable. z Helpful or unhelpful thoughts can determine how you respond to a situation. z By changing your thoughts, you could help change the way you feel. MODULE 3 Keep in mind Le ss on 3 . T hi nk in g di ffe re nt ly iS u p p o rt In te rv e n ti o n M an u al 95 Can you indicate which of Aryan’s thoughts may help make her feel better? Aryan might think… „ Making time for myself helps me to provide better care. „ I am a bad carer if my family member is not always happy. „ Maybe the person living with dementia will become better. „ No one understands how hard it is to care. „ No one can provide the care the way I do. „ Asking others for help can help me to share the duties of care. „ Dementia is a disease, it is not my or anyone else’s fault. Unhelpful thoughts make you feel bad Aryan has been caring for her family member who is living with dementia for several years now. She has many thoughts. Some make her feel worse, some make her feel better. z Unhelpful thoughts can make you feel bad. z Helpful thoughts are important to feel better and will assist you in dealing with situations in a more useful way. z To feel better, it is important to identify unhelpful thoughts. MODULE 3 Keep in mind2. Check your understanding Thoughts that can make you feel better. Le ss on 3 . T hi nk in g di ffe re nt ly iS u p p o rt In te rv e n ti o n M an u al 96 How do you think Xavier is feeling? Please check all the responses that you feel are appropriate. „ Angry „ Guilty „ Happy „ Lonely „ Sad „ Supported „ Upset 2. Learn to think differently by changing unhelpful thoughts into helpful ones What if Xavier instead thinks to himself, “if Gabriel thinks I need help, he must care about me and my father and wants to make sure we are doing well”? MODULE 3 3. Check your understanding How thoughts influence our feelings. Le ss on 3 . T hi nk in g di ffe re nt ly Xavier meets his friend Gabriel Xavier takes care of his father, who is living with dementia. While he is shopping, he meets his friend Gabriel, who asks, “How are you? Do you need any help caring for your father?” Xavier thinks to himself, “if Gabriel thinks I need help, he must think that I am a bad carer”. How does Xavier feel now? Please check all the responses that you feel are appropriate. „ Angry „ Guilty „ Happy „ Lonely „ Sad „ Supported „ Upset 4. Check your understanding Match feelings to a helpful thought. Sometimes you cannot change the things that happen (events), but you can change your response (thoughts). Keep in mind iS u p p o rt In te rv e n ti o n M an u al 97 „ I have to do everything alone. „ The person I care for does not care about me anymore. „ When the person I care for is not happy, it means that I am a bad carer. „ Maybe the person I care for will get better. „ I must always be available for the person I care for. „ I should not consider my own needs if I want to be a good carer. „ No one understands how hard it is to care. „ No one can provide care the way I do. „ He/she being diagnosed with dementia has complicated my life. „ I have no time for others as a carer. „ I feel sorry for the person I care for. „ Other people are better off than the person I care for and I. „ Other: MODULE 3 Le ss on 3 . T hi nk in g di ffe re nt ly Which unhelpful thoughts do you have? Please check the unhelpful thoughts that you have or provide additional examples. In an earlier example you indicated which thoughts are helpful and which may be unhelpful. Below you will find a list of unhelpful thoughts. 1. Activity iS u p p o rt In te rv e n ti o n M an u al 98 Changing your unhelpful thoughts to helpful ones can make you feel better.In an earlier example you indicated which thoughts are helpful and which may be unhelpful. Below you will find a list of helpful thoughts. Please check the helpful thoughts that you have or provide additional examples. „ It is okay to take time to relax as it will help me to provide a good standard of care. „ Sharing my feelings with others helps to take the pressure off. „ Asking for help from others can help me to share the burden of care. „ Making time for myself helps me to provide better care. „ Dementia is a disease; it is not my or anyone else’s fault. „ I do not have to give others their way all the time. „ Other: Which helpful thoughts do you have? MODULE 3 Keep in mind Le ss on 3 . T hi nk in g di ffe re nt ly 2. Activity iS u p p o rt In te rv e n ti o n M an u al 99 3. Thinking differently makes you feel better You cannot change the things that happen, but you can change your response. In other words, you cannot change events but you can change your thoughts. Example 1: Wei Wei takes care of his wife Xu, who is living with dementia. He writes the following: Name: Wei Yesterday my wife Xu and I visited some friends. We had tea together. Xu dropped her cup on the floor. When they started to clean the floor, Xu did not help, but she stood in the way. She did not apologise for her behaviour, but laughed. Our friends are upset with my wife and won’t invite us to their house again. My wife has dementia and is unable to think and act in the same way that she used to. Our friends won’t blame my wife as I have explained to them that she has dementia and that her thinking has declined. Instead of feeling worried and ashamed, I would have felt happy about the day we spent with our friends. What was the event that made you feel upset or miserable? What were your unhelpful thoughts? What would be more helpful to think? How could the helpful thoughts make you feel? MODULE 3 Le ss on 3 . T hi nk in g di ffe re nt ly iS u p p o rt In te rv e n ti o n M an u al 100 Example 2: Helen Helen takes care of her brother Matty, who is living with dementia. She writes the following: MODULE 3 Name: Helen A week ago, our sister came to visit us. At the end of the day, I said to Matty, “it was a great day, don’t you think?” Then he said that he was not sure, because he could not remember exactly what we had been doing. He said that he was tired and wanted to sleep. Nothing we do is worthwhile because Matty forgets everything. Everything is ruined because of his dementia. Even though he cannot remember what we did, I know that he had a great day too, and that is what counts. He smiled a lot today and kept saying how nice it was that our sister came. Instead of feeling sad and miserable, I would have felt happy about the day we spent with our sister. What was the event that made you feel upset or miserable? What were your unhelpful thoughts? What would be more helpful to think? How could the helpful thoughts make you feel? Le ss on 3 . T hi nk in g di ffe re nt ly iS u p p o rt In te rv e n ti o n M an u al 101 Now it’s your turn. In the next exercise you will work to change your unhelpful thoughts into helpful ones. Try to think of a recent event that made you feel upset and answer the questions below. You can refer back to the examples on the previous page for some help. MODULE 3 Le ss on 3 . T hi nk in g di ffe re nt ly Name: What was the event that made you feel upset or miserable? What were your unhelpful thoughts? What would be more helpful to think? How could the helpful thoughts make you feel? iS u p p o rt In te rv e n ti o n M an u al 102 Name: What was the event that made you feel upset or miserable? What were your unhelpful thoughts? What would be more helpful to think? How could the helpful thoughts make you feel? Practice makes perfect. Do you want to try one more time? Please answer the questions below for a different event. MODULE 3 Le ss on 3 . T hi nk in g di ffe re nt ly iS u p p o rt In te rv e n ti o n M an u al 103 You finished this lesson, well done! MODULE 3 There are events in which feeling upset, miserable, sad or angry is inevitable. Examples include: if the person you care for needs to go to the hospital or if you lose a dear friend or family member. To change your thoughts in such events would not do justice to your feelings. Keep in mind Le ss on 3 . T hi nk in g di ffe re nt ly z You cannot change what happens, but you can change your response. z You can learn to think differently by changing your unhelpful thoughts into helpful ones. z Thinking differently makes you feel better. Let’s review what you have learned in this lesson iS u p p o rt In te rv e n ti o n M an u al 104 8 Tell Max she cannot help him search now and leave. This is bad advice. Max has dementia and is feeling worried. He could be very upset if Jo leaves the house right now. 8 Search for the keys until she finds them. This could be helpful. Max might feel safer if he has the keys. However, this may mean Jo misses meeting her friend and is left feeling miserable. 8 Tell Max that he should be more careful not to lose his keys in the future. This is not such good advice. Max has dementia, he cannot help misplacing things. What do you think Jo should do? 9 ✓Think to herself, “Max has dementia and is sometimes worried when he loses things. I can take some time to help and then go.” Then call her friend and explain that she will come later. This is good advice. It is not the fact that Max has lost the keys that is making Jo miserable, but her concern that she always needs to help Max and cannot leave him alone anymore. After Jo has called her friend, she can help Max search for the keys, which will make him feel safer. Then she can go to see her friend. 1. Check your understanding Feelings and thoughts. ANSWERS - BEING A CARER Lesson 3. Thinking differently AN SW ER S - C AR IN G FO R M E • L es so n 3 iS u p p o rt In te rv e n ti o n M an u al 105 9 Making time for myself helps me to provide better care. This is a helpful thought. No one should feel guilty when taking time for themselves. It might help the carer to continue providing care in the long term. 8 I am a bad carer if my family member is not always happy. This thought will make Aryan feel unhappy and sad. The mood of the person living with dementia does not depend solely on the carer. For example, mood can also be related to dementia, depression, functional ability or personality. 8 Maybe the person living with dementia will get better. This thought may make Aryan feel disappointed as people with dementia continue to decline. There are many diseases that cause dementia. Unfortunately, there is no cure for any of these diseases yet. ✓ Which of Aryan’s thoughts may help make her feel better? 8 No one understands how hard it is to care. This thought may make Aryan feel upset, isolated and lonely. There might be people who do not understand how hard it is to care. However, talking to other people may help them better understand what dementia is and help you to take some pressure off. 8 No one can provide the care the way I do. This thought could make Aryan feel lonely, isolated and under a lot of pressure. Although others may provide care in a different way, that does not mean that it is always of a lower standard. It is important to involve others in caring for a person living with dementia, to avoid getting overwhelmed. 9 ✓Asking others for help can help me to share care duties. This is a helpful thought that may make Aryan feel more in control. Involving other people in caregiving has lots of potential benefits. For instance, the carer will be able to take breaks more regularly and provide care for a longer time. AN SW ER S - C AR IN G FO R M E • L es so n 3 2. Check your understanding Thoughts that can make you feel better. iS u p p o rt In te rv e n ti o n M an u al 106 Xavier thought, “if Gabriel thinks that I need help, he must think I am a bad carer.” How do you think Xavier is feeling? This is an unhelpful thought that may make Xavier feel: 9 upset 9 lonely 9 sad 9 angry 9 guilty Xavier thought, “if Gabriel thinks I need help, he must care about my father and want to make sure that we are doing well”. How does Xavier feel now? This is a helpful thought that may make Xavier feel happy or supported. AN SW ER S - C AR IN G FO R M E • L es so n 3 3. Check your understanding How thoughts influence our feelings. 4. Check your understanding Matching feelings to a helpful thought. M od ul e 4 . P ro vid in g ev er yd ay ca re PROVIDING EVERYDAY CARE Lesson 1. Eating and drinking - more pleasant mealtimes Lesson 2. Eating and drinking - preventing health problems Lesson 3. Toileting and continence care Lesson 4. Personal care Lesson 5. An enjoyable day 4 MODULE iS u p p o rt In te rv e n ti o n M an u al 108 1. Making mealtimes more pleasant Engaging people with dementia in simple tasks around mealtime helps to make the most of people’s skills, promote feelings of self-worth, and enjoy the mealtime. Why is this lesson important? Dementia can affect eating and drinking in various ways depending on the stage of dementia and other health conditions. How will this lesson help me? By learning how to help create more pleasant mealtimes and prevent dehydration. What will I learn? 1. Making mealtimes more pleasant. 2. Promoting a good mealtime atmosphere. 3. Health conditions that affect eating and drinking. 4. Preventing dehydration. MODULE 4 Le ss on 1 . E at in g an d dr in ki ng - m or e p lea sa nt m ea lti m es Lesson 1. Eating and drinking - more pleasant mealtimes iS u p p o rt In te rv e n ti o n M an u al 109 Let’s look at an example MODULE 4 Le ss on 1 . E at in g an d dr in ki ng - m or e p lea sa nt m ea lti m es How would you advise Siya’s family to deal with this situation? Please select the answer that you think is correct from the list. „ Bring Siya’s dinner to her room. „ Demand that Siya joins them for dinner. „ Let Siya help with meal preparation and cleaning activities. 1. Check your understanding Making mealtimes more pleasant. Siya was a housewife and cooked every day for her family for many years. Recently, she lost her husband and now lives with one of her sons. Adi, her daughter-in-law, provides all the cooking in the new household. Siya has been very sad in her new home and says she’s not hungry when she is offered food. She does not join the family for dinner. iS u p p o rt In te rv e n ti o n M an u al 110 Mealtime activities Please select all activities from the list below that you think the person you care for can still engage in and would enjoy. Now, try to think about involving the person that you care for around mealtimes. Mealtime activities Example Washing or drying dishes Shopping together Meal preparation Preparation of the table Cleaning the table „ Let the person living with dementia choose what food and drinks they like to buy for breakfast, lunch and dinner. „ Let the person living with dementia help chopping, stirring, or cooking. „ Let the person living with dementia lay the table for breakfast, lunch and dinner. „ Let the person living with dementia remove everything from the dining table and wipe the table. „ Let the person living with dementia put dishes in the sink or wash and dry the dishes. 1. Activity MODULE 4 Le ss on 1 . E at in g an d dr in ki ng - m or e p lea sa nt m ea lti m es If you think that the person you care for can still engage in and would enjoy any of the listed activities, perhaps you could ask or assist them in trying these activities the next time you have a meal. iS u p p o rt In te rv e n ti o n M an u al 111 2. Promoting a good mealtime atmosphere Mealtime is a good opportunity for carers to show their care and support for the person living with dementia. An enjoyable mealtime atmosphere may help encourage them to eat and drink. Let’s look at an example again. Spilling food Shang has Alzheimer’s disease and lives with his oldest son since his wife passed away a year ago. The family now has four generations who eat together at the table. Shang sees the mealtime as the best time of the day. Recently, Shang’s hands have started to tremble and he often spills or drops food on the table and the floor. How would you advise Shang’s son to deal with this situation? Please check the responses that you feel are appropriate. „ Buy adaptive eating and drinking aids from the shop for Shang. „ Set up a separate table for his father to eat in his own bedroom, because spilling and dropping food may make the family irritated. „ Organize a family meeting to ask all family members to think of more positive and constructive ways to respond to the situation at mealtimes. 2. Check your understanding Promoting a good mealtime atmosphere. MODULE 4 Le ss on 1 . E at in g an d dr in ki ng - m or e p lea sa nt m ea lti m es iS u p p o rt In te rv e n ti o n M an u al 112 Health condition Changes that you may have observed Recommended actions you may try Poor appetite Toothache Poorly fitting artificial dentures „ Does not want to eat the meal „ Eats only small amounts of food „ Takes a long time to eat a small amount of food „ Refuses to eat and drink „ Is restless „ Has a facial expression indicating pain „ Refuses to eat and drink „ Is restless „ Has a facial expression indicating pain „ Refuses to wear dentures „ Throws dentures on the floor z Make food appealing: use different textures, flavours, smells, tastes, sounds and colours that the person enjoys z Eat with the family, rather than alone z Play soft music that they like during mealtime z Increase physical activities that they can do during the day z Ask whether the person is in pain z Ask them to point out the area of pain z Check whether there are loose teeth, mouth ulcers, etc. z Seek help from a doctor or dentist z See above for toothache z Check that the dentures are in good condition and fit properly Health conditions Common health conditions can affect eating and drinking. The activity below teaches you how to improve these conditions, if they are present. 2. Activity Le ss on 1 . E at in g an d dr in ki ng - m or e p lea sa nt m ea lti m es MODULE 4 iS u p p o rt In te rv e n ti o n M an u al 113 Diarrhoea Side effects from medications Does not have bowel movement for more than 7 days „ Liquid faeces „ Increased number of bowel movements „ Incontinency and difficulty controlling bowel movements „ Nausea, vomiting, liquid faeces or constipation „ Does not want to have a meal „ Eats only small amounts of food „ Hard and dry faeces „ Difficulty passing faeces/straining „ Having a feeling of incomplete bowel movements „ Becomes anxious or agitated „ Hard stomach „ Nausea and vomiting z Seek help from a doctor z Seek help from a doctor z Seek help from a doctor z Upon resolution of the problem: { Increase fibre in diet { Increase drinking of fluids { Increase physical activity Body pain „ Refuses to eat and drink „ Is restless „ Unusual body postures „ Has a facial expression of pain z Ask whether the person is in pain z Ask them to point out the area of pain z Seek help from a doctor Health condition Changes that you may have observed Recommended actions you may try 2. Activity Le ss on 1 . E at in g an d dr in ki ng - m or e p lea sa nt m ea lti m es MODULE 4 iS u p p o rt In te rv e n ti o n M an u al 114 Weight loss Weight gain Depression „ Forgets to eat „ Eats smaller amounts of food „ Eats regular amounts of food but still loses weight „ Eats all the food that is served „ Eats more snacks than before because they forget that they already ate „ Is obsessed with food „ Refuses to eat or says they are not hungry „ Eats small amounts of food „ Has no interest in food z Increase the amount of food z Provide foods that they will like z Increase flavourful foods as the person’s taste might be impaired z Seek advice from a doctor z Model eating and drinking z (i.e. eat and drink with the person) z Serve smaller portions z Remove the plate when the person indicates that they are full z Provide low calorie snacks z Seek help from a doctor Memory loss; forgets to eat or drink „ Asks when the next meal is even if it already happened „ The person says that they are hungry even if they already ate z Remind the person to eat and drink regularly z Model eating and drinking (i.e. eat and drink with the person) z Provide snacks between meal times Health condition Changes that you may have observed Recommended actions you may try 2. Activity Le ss on 1 . E at in g an d dr in ki ng - m or e p lea sa nt m ea lti m es MODULE 4 iS u p p o rt In te rv e n ti o n M an u al 115 4. Preventing dehydration People living with dementia have a higher risk of being dehydrated. There can be several reasons for this: z inability to explain their needs; z decreased thirst sensation; z not offered enough to drink; and, z swallowing problems in the late stage of dementia. The person you care for needs to be encouraged to drink 8-10 glasses (1500-2000 millilitres) of fluid (water, iced lollies, soup and juice, not including tea or coffee every day. Severe dehydration Ben has Alzheimer’s disease, but he is able to eat and drink without assistance from his wife, Mary. Ben likes to walk a lot. One hot afternoon, Mary also notices that Ben seems very tired, walks very slowly and then collapses on the floor. Ben is sent to the local hospital’s Emergency Department and is diagnosed with dehydration. After treatment in the hospital, Ben has recovered and is able to go home again. How would you advise Mary to deal with the situation after Ben is discharged home? Please select all the responses that you feel are appropriate. „ Mary needs to let Ben make the decision about when to drink. „ Mary needs to ensure that Ben drinks 8-10 glasses of water during the day. „ Mary records the time and the amount of fluid Ben actually consumes. 3. Check your understanding Severe dehydration. MODULE 4 Le ss on 1 . E at in g an d dr in ki ng - m or e p lea sa nt m ea lti m es iS u p p o rt In te rv e n ti o n M an u al 116 Timetable for eating and drinking The timetable below is for you to remind the person living with dementia to eat and drink. Give them the opportunity to choose what to drink. Time of day Type of fluid (e.g. water) Amount of fluid (e.g. 3 glasses) Morning - Noon Noon - Dinnertime Dinnertime - Bedtime 3. Activity WARNING! If the person you care for is not allowed fluids due to a heart condition, you need to follow the doctor’s order regarding how much to drink. MODULE 4 Le ss on 1 . E at in g an d dr in ki ng - m or e p lea sa nt m ea lti m es iS u p p o rt In te rv e n ti o n M an u al 117 Let’s review what you have learned z The person you care for needs to be encouraged and supported to eat and drink. z You can engage the person you care for in a variety of mealtime activities to create a pleasant mealtime for them, which helps to improve self-worth and a feeling of achievement. z Eating and drinking can be facilitated by modifying food, utensils and the environment. z You can maintain good eating and drinking for the person you care for by improving their health condition. Seeking assistance from health professionals might be necessary. z To help prevent dehydration, it is important to prompt the person living with dementia to drink. z Record and monitor the amount of fluid they consume. MODULE 4 Le ss on 1 . E at in g an d dr in ki ng - m or e p lea sa nt m ea lti m es You finished this lesson, well done! iS u p p o rt In te rv e n ti o n M an u al 118 iS u p p o rt In te rv e n ti o n M an u al How could Siya’s family deal with the situation? 8 Bring Siya dinner in her room. This is not helpful because it might further isolate Siya from her family. Siya may not feel welcome in the new home. She has lost her husband, her own home and now also her previous roles as cook and housekeeper. 8 Demand that Siya joins them for dinner. This is not such a good response because it may make Siya angry or cause her to further withdraw. 9 Siya’s family should let her help with the meal preparation and cleaning activities. This is a good response because her family knows Siya still enjoys cooking and should therefore support her to continue engaging in the activities that she likes and is still able to do. AN SW ER S - C AR IN G FO R M E • L es so n 1 1. Check your understanding Making mealtimes more pleasant. ANSWERS - PROVIDING EVERYDAY CARE Lesson 1. Eating and drinking - more pleasant mealtimes iS u p p o rt In te rv e n ti o n M an u al 119 iS u p p o rt In te rv e n ti o n M an u al 9 Buy adaptive eating and drinking aids from the shop for Shang. This is a good response because Shang’s son recognises that his father is no longer able to manage eating and drinking using the usual utensils. By providing other utensils he is trying to solve this problem. 8 Set up a separate table for his father to eat in his own bedroom, because spilling and dropping food may make the family irritated. This is not helpful because separation will make Shang feel sad or angry, which might prevent him from eating and drinking properly. 9 Organise a family meeting to ask all family members to think of more positive and constructive ways to respond to the situation at mealtimes. This is a good response because Shang’s son is trying to provide a positive mealtime atmosphere for everyone. 2. Check your understanding Promoting a good mealtime atmosphere. How could Shang’s son deal with the situation? AN SW ER S - P RO VI DI NG E VE RY DA Y CA RE • Le ss on 1 iS u p p o rt In te rv e n ti o n M an u al 120 iS u p p o rt In te rv e n ti o n M an u al How could Mary deal with this situation after Ben is discharged home? 8 Mary needs to let Ben make the decision about when to drink. This answer is not so good even though she is respecting Ben’s autonomy. Since people with dementia have decreased thirst sensation, it could be dangerous to leave it up to them whether to drink or not without reminding them. If not reminded, Ben may get dehydrated again and collapse. 9 Mary needs to ensure that Ben drinks 8-10 glasses of water during the day. This is a good response. Mary notices that Ben may forget to drink, so she is trying to help her husband drink enough water every day. 9 Mary records the time and the amount of fluid Ben actually consumes. This is a good response. It can be helpful to establish a routine and record the number of glasses Ben drinks from breakfast time to dinner time. Drinking after dinner time may potentially increase night time visits to the bathroom. 3. Check your understanding Severe dehydration. AN SW ER S - P RO VI DI NG E VE RY DA Y CA RE • Le ss on 1 iS u p p o rt In te rv e n ti o n M an u al 121 1. Improve eating and prevent weight loss In the late stages of dementia, a person living with dementia may experience difficulty chewing and swallowing. Reduced abilities to smell, taste and see may also happen due to ageing and dementia. These can have a negative impact on the person’s health. Depression and changes in eating patterns may also impair eating and digestion. Let’s look at an example Chiu has been living with dementia for 9 years and is cared for by her daughter, Ling. Recently, Ling notices that her mother sleeps during the day and is very difficult to wake and assist with her meals during the normal mealtimes. Ling believes that her mother is not hungry and does not want to disturb her sleep. A recent check-up showed that Chiu has lost 2.5 kg since the last check-up 5 weeks ago (5% of her body weight). Why is this lesson important? Dementia can affect eating and drinking in various ways depending on the stage of dementia and other health conditions. How will this lesson help me? By learning how to improve eating and drinking, prevent weight loss and promote drinking and eating safely. What will I learn? 1. Improve eating and prevent weight loss. 2. Help the person you care for to eat safely and prevent aspiration pneumonia. MODULE 4 Le ss on 2 . E at in g, d rin ki ng a nd p re ve nt in g he al th p ro bl em s Lesson 2. Eating, drinking and preventing health problems iS u p p o rt In te rv e n ti o n M an u al 122 What would you advise Ling to do to improve Chiu’s eating? Please select all the responses that you feel are appropriate. „ Be flexible to have meals when her mother is awake. „ In a diary, keep a record of what and how often her mother eats. „ Ensure Chiu has access to foods she enjoys eating. 2. Help the person you care for to eat safely and prevent aspiration pneumonia People with dementia may experience the problems listed below. z People with dementia may not be able to judge what can or cannot be eaten. They may eat inedible materials that are within reach when feeling hungry. Make sure to keep inedible materials and chemicals in safe places. z If the person is in the late stages of dementia, they may experience swallowing difficulties that can cause a lung infection called aspiration pneumonia. Aspiration pneumonia occurs when food is swallowed in the wrong way and goes into the person’s lungs instead of their stomach. This can then cause an infection. Eating, drinking and feeding methods may need to be modified to prevent this life-threatening problem. 1. Check your understanding How to improve eating and prevent weight loss. MODULE 4 Le ss on 2 . E at in g, d rin ki ng a nd p re ve nt in g he al th p ro bl em s iS u p p o rt In te rv e n ti o n M an u al 123 What do you think Ella should do? Please select all the responses that you feel are appropriate. „ Recognize that she needs to lock household chemicals, such as dishwashing soap, in a cabinet. „ Leave some inedible household materials in the places Oliver is able to reach, because she thinks Oliver should be taught that those cannot be eaten. MODULE 4 Le ss on 2 . E at in g, d rin ki ng a nd p re ve nt in g he al th p ro bl em s 2. Check your understanding Inedible materials. Inedible materials Oliver has been living with dementia for 10 years and is cared for by his wife, Ella. Ella starts to observe her husband closely during the day. Recently, Ella notices that the soaps she put in the kitchen and bathroom have disappeared. She also notices that her husband is eating the flowers that she puts on the dining table. She sees Oliver go to the kitchen and mistakenly pick up a soy sauce bottle and even a bottle of dishwashing detergent to drink. iS u p p o rt In te rv e n ti o n M an u al 124 What do you think Wei should do? Please select all the responses that you feel are appropriate. „ Learn how to make healthy, soft foods and thickened drinks for Lu. „ Not pay attention to how Lu is sitting when they are helping her eat. A healthy soft diet can be made by hand without using an electric blender. Thickened fluids can be made by adding corn flour to water or other fluids while heating and stirring it, until it thickens. Note: commercial stir-in thickeners are available in the supermarket in many countries. MODULE 4 Le ss on 2 . E at in g, d rin ki ng a nd p re ve nt in g he al th p ro bl em s 3. Check your understanding Helping a person to eat safely. Tip Helping a person to eat safely Lu has been living with dementia for 10 years and is bedridden. Her husband, Wei, helps her to eat safely. Recently, he found Lu has difficulty swallowing soft foods that he makes for her. He also notices that she coughs when she drinks something. She seems to have a high temperature and is admitted to the hospital. Lu is diagnosed with aspiration pneumonia. After a month of treatment in the hospital, Lu has recovered and is discharged home. The doctor orders a healthy, soft diet and thickened drinks for Lu to consume at home to prevent future aspiration pneumonia. iS u p p o rt In te rv e n ti o n M an u al 125 You finished this lesson, well done! MODULE 4 Le ss on 2 . E at in g, d rin ki ng a nd p re ve nt in g he al th p ro bl em s Let’s review what you have learned z You can modify eating patterns for the person you care for to improve nutrition. z You can help the person living with dementia to eat and drink safely by keeping inedible materials and household chemicals in a safe place. z You can help prevent aspiration pneumonia by modifying the foods and drinks that they eat and positioning the person you care for in an upright position when helping them eat. iS u p p o rt In te rv e n ti o n M an u al 126 iS u p p o rt In te rv e n ti o n M an u al What would you advise Ling to do to improve Chiu’s eating? 9 Be flexible to have meals when her mother is awake. This is a good response. People in late stages of dementia need rest, so flexibility in planning meals will be very helpful when they are sleeping during normal mealtimes. 9 Keep a record of what and how often her mother eats in a diary. This is a good response. Recording what people with dementia eat is important. This way, carers will better understand when and what kind of food is needed for sufficient food intake. 9 Ensure Chiu has access to foods that she enjoys eating. This is a good response. What foods did she enjoy eating before her diagnosis of dementia? What foods does she seem to enjoy now? 1. Check your understanding How to improve eating and prevent weight loss. ANSWERS - PROVIDING EVERYDAY CARE Lesson 2. Eating, drinking and preventing health problems MODULE 4 AN SW ER S - E AT IN G, D RI NK IN G AN D PR EV EN TI NG H EA LT H PR OB LE M S • L es so n 2 iS u p p o rt In te rv e n ti o n M an u al 127 iS u p p o rt In te rv e n ti o n M an u al What do you think Ella should do? 9 Recognize that she needs to lock household chemicals, such as dishwashing soap, in a cabinet. This is a good response. Keeping these dangerous things away will help protect the person living with dementia. 8 ✗Leave some inedible household materials in the places Oliver is able to reach because she thinks that Oliver should be taught that those cannot be eaten. This is not a good response. People in late stages of dementia can have a changed judgement of what they can or cannot eat. Keeping these dangerous things away from them is very important. How can Wei help Lu? 9 Learn how to make healthy, soft food and thickened drinks for Lu. This is a good response. Providing healthy, soft food and thickened drinks will make it easier for people in the late stage of dementia to continue to eat and drink on their own and maintain a healthy weight. 8 ✗Not pay attention to how Lu is sitting when they are helping her eat. This is not a good response. They should sit Lu in an upright position which will help her eat and drink better and prevent aspiration pneumonia. 2. Check your understanding Inedible materials. 3. Check your understanding Helping a person to eat safely. MODULE 4 AN SW ER S - E AT IN G, D RI NK IN G AN D PR EV EN TI NG H EA LT H PR OB LE M S • L es so n 2 iS u p p o rt In te rv e n ti o n M an u al 128 1. Possible solutions for problems such as urinating on the floor or losing bladder control Urinating on the floor Dementia can affect a person’s ability to find their way to the bathroom and identify the toilet and/or toilet seat. You should not blame the person living with dementia for this behaviour, nor punish them as this type of response will cause them and yourself stress. Modifying your house may help them use the bathroom. Why is this lesson important? Poor toileting and incontinence may lead to infections and other health problems, low self-esteem and withdrawal from social activities for a person living with dementia. How will this lesson help me? This lesson will help you think about the health concerns, and assist the person you care for with using the toilet and continence. What will I learn? 1. Possible solutions for problems such as urinating on the floor or losing bladder control. 2. Using incontinence aids and equipment. MODULE 4 Le ss on 3 . T oi let in g an d co nt in en ce ca re Lesson 3. Toileting and continence care iS u p p o rt In te rv e n ti o n M an u al 129 Zhen is taking care of her husband, Fu, since he developed vascular dementia several years ago. Fu is able to go to the toilet himself without assistance, but recently, Zhen finds Fu urinating on the floor outside the toilet. Let’s look at an example Below are some tips in case the person you care for experiences difficulties using the toilet. z Put an image of a toilet on the toilet door to help them find it. z Provide directions to the toilet if they are unable to find it. z Provide adequate nightlights in the hallway between the bedroom and the toilet. z Use contrasting colours for the toilet seat. z Change the person’s trousers to some that are easier to remove. z Provide step-by-step instructions to the person if they forget how to use the toilet. What do you think is the right response for Zhen? Please select the correct answer. „ Make some simple changes to the environment and clothing, such as putting an image of a toilet on the bathroom door, using a contrasting colour for the toilet seat or changing Fu’s trousers to a pair of pants that does not need a belt. „ Tell her husband, Fu, that he is making trouble and punish him by not taking him for his daily walk in their neighbourhood. 1. Check your understanding Prevent urinating on the floor. Tip MODULE 4 Le ss on 3 . T oi let in g an d co nt in en ce ca re iS u p p o rt In te rv e n ti o n M an u al 130 Contributing factors Recommended solutions A long distance to go to the toilet in the house Public toilet that is at a distance from the house Not being able to find the toilet Not enough colour contrast of the toilet seat Not enough lighting in the hallway Not enough lighting in the toilet z Direct the person you care for to the toilet z Provide a bedside commode at night z Use nightlights in the bedroom and the house z Provide a commode for them to use in the house z Put a picture of a toilet on the toilet door z Replace the toilet seat with a different colour to increase the contrast z Provide adequate lighting in the hallway z Provide adequate lighting in the toilet What other factors may contribute to urinating on the floor or losing bladder control? Le ss on 3 . T oi let in g an d co nt in en ce ca re iS u p p o rt In te rv e n ti o n M an u al 131 Contributing factors Recommended solutions Narrow toilet doors that do not allow the walker or wheelchair to pass Visual impairment Unable to undo trousers Forgetting what to do in the toilet z Modify the door opening to allow a walker or wheelchair to pass z Direct the person you care for to the toilet during the day z Provide a bedside commode at night z Change trousers to ones that are easily undone and removed z Assist the person you care for to pull on and do up trousers z Remind the person you care for of the activities they need to do z Provide step-by-step instructions for them to use the toilet Le ss on 3 . T oi let in g an d co nt in en ce ca re iS u p p o rt In te rv e n ti o n M an u al 132 What do you think is the right response for Joshua? Please select the correct answer. „ Since this is an embarrassing situation for Joshua, he should stop taking his mother shopping. „ Joshua should try to make sure that his mother uses the toilet before leaving to go shopping. MODULE 4 Le ss on 3 . T oi let in g an d co nt in en ce ca re 2. Check your understanding Dealing with losing bladder control. Urinating in public places Dementia affects the person’s ability to explain their needs, for example needing to go to the bathroom. Additionally, dementia can affect a person’s judgement of what is normal or not in public. You could help prevent these accidents (incontinence) by maintaining a regular, daily schedule to assist the person you care for to go to the toilet. Identifying how often they used the toilet before they had dementia might be helpful. You can also identify whether the person you care for needs to go to the bathroom by the way they behave, e.g. if they become agitated, stressed, anxious or restless. Let’s look at an example Joshua is taking care of his mother Esther, who received a diagnosis of dementia 5 years ago. Joshua usually takes his mother shopping in the neighbourhood as she enjoys meeting people. Recently, Joshua notices that his mother has lost bladder control during the day. iS u p p o rt In te rv e n ti o n M an u al 133 06:00-09:00 09:00-12:00 12:00-15:00 15:00-18:00 18:00-21:00 21:00-00:00 0:00-03:00 03:00-06:00 Time Number of trips to the toilet Number of times lost control of bladder or bowel What possible causes did you observe? Toilet use diary Date: To improve bladder or bowel control, it may help to fill out a toilet diary. Le ss on 3 . T oi let in g an d co nt in en ce ca re iS u p p o rt In te rv e n ti o n M an u al 134 There are numerous disposable and/or washable incontinence aids, pads and equipment. When selecting products, you should consider their cost, effectiveness, comfort and convenience. For bedridden males, using urinals to collect urine may help. Some of these urinals are designed to prevent the backward leaking of urine. In the late stages of dementia, the person living with dementia may not be able to control their bladder and bowel movements. Before using any incontinence aids and equipment, you should ask a health professional to help identify the cause(s) of incontinence, as these may be treatable and therefore reversible. Tip MODULE 4 Le ss on 3 . T oi let in g an d co nt in en ce ca re 2. Using incontinence aids and equipment iS u p p o rt In te rv e n ti o n M an u al 135 Let’s look at an example Gloria is in a late stage of Alzheimer’s disease and is living with her son’s family. Her daughter-in-law, Marina, is taking care of her. Since Gloria cannot control her bladder or bowel movement, the doctor suggests that Marina try incontinence pads for Gloria. In the beginning, Marina encounters a number of problems: z Gloria constantly takes the pad off and throws it on the floor. z Gloria still has wet pants even when using incontinence pads. z Gloria has skin problems in her genital area. MODULE 4 Le ss on 3 . T oi let in g an d co nt in en ce ca re 3. Check your understanding Use of personal hygiene products. What do you think is the right response for Gloria? Please select the correct answer. „ Marina should force Gloria to wear the pad. „ Marina should remind her mother-in-law to use the bathroom at scheduled times if she is not doing so herself. iS u p p o rt In te rv e n ti o n M an u al 136 Tip Constantly taking the pad off and throwing it on the floor Still having wet pants even while using the incontinence pads Having sore or irritated skin in the genital area Having fever, being in pain, strong smelling urine z Feeling uncomfortable with the pad z The pad size is wrong z The pad is wet and needs to be changed z Check whether the pad size is correct z Change the wet pad on time z Consult the doctor regarding the person’s behaviour z Use the right size and type of pad z Maintain scheduled trips to the toilet to minimize the use of pads z Select suitable pad size and type z Change the soiled pad on time and maintain hygiene around genital area z Apply protective creams or lotions that maintain healthy skin z See the doctor z Maintain an intake of 6-8 glasses of water or juice per day except if the person is under fluid or dietary restriction z Maintain good genital care z The pad size is incorrect z The schedule for using the toilet has not been maintained z Incontinence pads can cause skin breakdown z Unsuitable pad size and delaying changes of soiled pads in a timely manner can cause skin infection z Urinary tract infections are triggered by a number of factors, including incontinence and poor genital care Below are some tips for incontinence care. Problems Possible causes Recommended solutions Le ss on 3 . T oi let in g an d co nt in en ce ca re iS u p p o rt In te rv e n ti o n M an u al 137 Let’s review what you have learned z Do not blame the person after any accidents, such as urinating on the floor. z Modify the environment to reduce the chance of bladder and bowel accidents (for example, put a picture of a toilet on the bathroom door). z Take the person living with dementia to the toilet regularly to reduce accidents. z The frequency of toilet visits will need to be established based on the toilet pattern that the person living with dementia had before the onset of dementia. z If these changes do not help, incontinence aids and equipment may help. z Be aware that the use of incontinence aids can irritate the skin if used incorrectly. z Maintain good genital care to reduce the risk of a urinary tract infection. z If the person living with dementia is not under fluid restriction, encourage them to drink 6-8 glasses of water or juice per day to help prevent urinary tract infections. MODULE 4 Le ss on 3 . T oi let in g an d co nt in en ce ca re You finished this lesson, well done! For more tips on how to stay in control of your feelings please refer back to Lesson 3.Thinking differently in Module 3. Tip iS u p p o rt In te rv e n ti o n M an u al 138 iS u p p o rt In te rv e n ti o n M an u al 9 Make some simple changes to the environment and clothing, such as putting an image of a toilet on the bathroom door, using a contrasting colour for the toilet seat or changing Fu’s trousers to a pair of pants that doesn’t need a belt. This is the best answer. People with dementia may have difficulties finding and using the toilet, so these changes could help Fu. What do you think is the right response for Zhen? 8 Tell her husband that he is making trouble and punish him by not taking him for his daily walk in their neighbourhood. This is not a good answer. You should never threaten people with dementia in this way. Fu will feel ashamed and embarrassed and this response could cause him to become upset. 1. Check your understanding Prevent urinating on the floor. ANSWERS - PROVIDING EVERYDAY CARE Lesson 3. Toileting and continence care MODULE 4 AN SW ER S - P RO VI DI NG E VE RY DA Y CA RE • Le ss on 3 iS u p p o rt In te rv e n ti o n M an u al 139 iS u p p o rt In te rv e n ti o n M an u al 8 ✗Since this is an embarrassing situation for Joshua, he should stop taking his mother shopping. This is not the best response because his mother will miss out on a very important pleasant activity. What do you think is the right response for Joshua? 9 Joshua should try to make sure that his mother uses the toilet before leaving to go shopping This is a good response. It is a good way to help prevent Esther from losing bladder control. 8 Marina should force Gloria to have the pad on. This is not the right answer! It’s very important to check why a person living with dementia may feel uncomfortable with the pad. Is the size wrong? Is the pad wet and does it need to be changed? What do you think is the right response for Marina? 9 Marina should remind her mother-in-law to use the toilet at scheduled times if she is not doing so herself. This is the best answer. Scheduled toilet visits may help minimise incontinence and the need for pads. 2. Check your understanding Dealing with losing bladder control. 3. Check your understanding Use of personal hygiene products. AN SW ER S - P RO VI DI NG E VE RY DA Y CA RE • Le ss on 3 iS u p p o rt In te rv e n ti o n M an u al 140 1. Modifying the environment to make personal care easier There are different reasons for not being able to perform personal care. One reason is that people with dementia may not find the things that they need for personal care. For example, when you cannot find your toothbrush and toothpaste due to memory loss, it will be difficult to brush your teeth. However, you can modify the environment to make it easier for them to find things that are needed for personal care. Why is this lesson important? Dementia affects people’s ability to maintain personal care, for example brushing teeth, showering/bathing and grooming. Therefore, assistance with maintaining good personal care is very important. Poor personal care may lead to infections and other health problems, low self-esteem and withdrawal from social activities for people with dementia. How will this lesson help me? This lesson will help you think about the health concerns of the person you care for and assist them with personal care. What will I learn? 1. Modifying the environment to make personal care easier. 2. Tips for daily dressing, oral care and assisting in bathing. MODULE 4 Le ss on 4 . P er so na l c ar e Lesson 4. Personal care iS u p p o rt In te rv e n ti o n M an u al 141 What would you think is the right response for Mohammed? Please select the correct answer. „ Put personal care items in the order of use and label them with large print words and different colours for Mariam to read. „ Ask their daughter-in-law to take Mariam from the table to the bathing room and assist her with washing and changing clothes. Let’s look at an example Mariam has Alzheimer’s disease, but she is able to care for herself without assistance from family members. Recently, her husband, Mohammed, notices that she sits at the table for breakfast in a nightgown without having washed her face, brushed her hair, or doing her make-up as she usually does. There may be several reasons why Mariam may not undertake personal care before breakfast anymore. One of them is that she may be depressed. For more information on depression please see Lesson 4. Depression, anxiety or apathy in Module 5. Below are some tips that may help people with dementia find items or places, and to do personal care activities independently. z To find the bathroom or toilet: put a picture or words on the bathroom door or direct the person to the bathroom. z To find personal care materials: make items easy to see in the bathroom, label items with their name, use pictures or words on the bathroom wall to point out items, use contrasting colours. z To help turn the tap on and off: use colour indicators to label the direction for turning the tap on and off, instruct the person to turn the tap on and turn off, assist if needed. MODULE 4 Le ss on 4 . P er so na l c ar e 1. Check your understanding Promoting personal hygiene. Tip iS u p p o rt In te rv e n ti o n M an u al 142 2. Tips for daily dressing, oral care and assisting in bathing Difficulties choosing the right clothes or dressing appropriately Dementia can affect the person’s ability to choose clothes and dress appropriately. You can assist the person you care for to choose clothes and to dress in a way that makes the most use of their remaining skills. You should not take over these tasks when the person living with dementia can still perform them. What would you think is the right response for Jane? Please select the correct answer. „ Tell Ted that he needs to be less messy, choose clothes for Ted and dress him. „ Remind Ted to lay out his clothes in the evening and encourage him to wear pants that do not need a belt and shoes that do not need laces. Let’s look at an example Ted has Alzheimer’s disease and is cared for by his wife Jane. Ted used to lay out his clothes for the next day in the evening. Recently, Jane found that Ted forgets to do this and is inclined to wear the same clothes every day. Jane also observes that Ted leaves some buttons of his shirt undone, his belt unbuckled and forgets to lace up his shoes. MODULE 4 Le ss on 4 . P er so na l c ar e 2. Check your understanding Getting dressed. iS u p p o rt In te rv e n ti o n M an u al 143 Difficulties brushing one’s teeth Dementia not only affects memory but also organization, coordination and concentration, which are required to perform mouth care. Poor mouth care is associated with poor appetite, bad breath, infections of the teeth or gums and other health problems. The goal of assisting with mouth care is to help the person make the most use of their remaining skills. What would you think is the right response for Lingling? Please select the correct answer. „ Put Guoliang’s dentures into his mouth without asking. „ Instruct her husband how to brush his teeth step-by-step and praise him when he is doing well. Let’s look at an example Guoliang has Alzheimer’s disease but is able to brush his teeth without assistance. Recently, Guoliang’s wife, Lingling notices that her husband makes a big mess in the bathroom with water and toothpaste on the countertop and the floor. She also observes that her husband is unable to brush his teeth in the order that he usually does and can’t insert his artificial dentures himself. MODULE 4 Le ss on 4 . P er so na l c ar e 3. Check your understanding Promoting mouth care. iS u p p o rt In te rv e n ti o n M an u al 144 Please select any mouth care steps that the person you care for needs help with from the list below. „ Putting toothpaste on the toothbrush „ Brushing teeth in an order that will clean teeth and gums „ Rinsing and cleaning mouth „ Using floss or toothpick to clean between teeth daily „ Applying balm to moisturize lips when needed „ Checking for signs of mouth infections or toothache when needed „ Removing, washing, cleaning, and storing artificial dentures if needed 1. Activity MODULE 4 Le ss on 4 . P er so na l c ar e iS u p p o rt In te rv e n ti o n M an u al 145 Difficulties performing personal care and bathing Dementia may also affect the person’s ability to wash their hair and take a shower or a bath. A person living with dementia may view assistance with personal care as a threat to his or her privacy, safety and security, and may refuse or resist any help. Let’s look at an example Feng has Alzheimer’s disease and is cared for by his wife Yuan. Due to her age, Yuan is not strong enough to help bathe Feng anymore, so the family decides that the three sons-in-law could take turns to help with Feng’s weekly bath. The oldest son-in-law is very kind to Feng and reassures him that he will make him comfortable during the bath. He takes Feng to the bathroom and starts to undress him. Feng suddenly pushes him away, shouts at him and tells him to go away. MODULE 4 Le ss on 4 . P er so na l c ar e 4. Check your understanding Resisting help with bathing. What would you think is the right response for Feng’s family? Please select the correct answer. „ Since the family notices that Feng thought his son-in- law was a stranger, Yuan decides to be with Feng while her son-in-law bathes him. „ They should say to Feng that he should be grateful for the help he receives and if he continues to behave this way, he will be sent to a long-term care facility. iS u p p o rt In te rv e n ti o n M an u al 146 People with dementia may show resistance during personal care, or even become aggressive like Feng in this example. To read more about how to prevent or deal with aggression, please refer to Lesson 3. Dealing with behaviour changes that might happen in people with dementia in Module 5. Below are some tips for assisting with bathing. z Identify the times of day that the person you care for prefers to have a bath/shower. z Switch from a shower/bath to a sponge bath. (Note: bath tubs are particularly difficult as they may lead to falls and it may be hard for the carer to lift the person living with dementia out of the tub.) z If using the shower or bathtub, use a non-slip bath or shower mat to help prevent falls. z Adaptive seating or equipment, such as grab bars and shower chairs, may help. z For people with dementia who are afraid of water, try to reduce the water flow. Tip MODULE 4 Le ss on 4 . P er so na l c ar e When assisting with personal care, ask the person living with dementia for their preferences whenever possible and respect their choice. Reassure them that they are safe and comfortable. iS u p p o rt In te rv e n ti o n M an u al 147 Select any personal care activities that the person living with dementia needs help with. Coach them through the individual steps involved in each activity. „ Selecting daytime clothing „ Undressing before shower/bath „ Taking pyjamas off/on „ Shaving „ Washing and drying face „ Applying body lotion to moisturize skin „ Drying body after washing „ Combing hair „ Preparing for a shower/bath „ Putting on make-up „ Putting non-slip mats on the floor „ Washing hair/body during shower/bath „ Washing and drying hands „ Using towel to dry hair/body „ Washing and drying genital areas „ Dressing after shower/bath „ Washing and drying feet „ Checking for signs of skin problems „ Changing night clothing into daytime clothing „ Using electrical hairdryer „ Turning the tap on, adjusting the water temperature and preparing for bathing „ Cutting fingernails and toenails when needed MODULE 4 Le ss on 4 . P er so na l c ar e 2. Activity iS u p p o rt In te rv e n ti o n M an u al 148 Let’s review what you have learned z Engage the person living with dementia in personal and mouth care as long as possible, using remaining skills. z Modify the environment, for example by providing guidance, encouraging them to select different types of clothes or providing seating while performing personal care. z Engage the person you care for in daily decision making, for example what clothes they would like to wear. z Keep in mind that not have enough assistance with personal care may cause agitation or aggression. z Be compassionate and try to understand why they resist being assisted with personal care. You finished this lesson, well done! MODULE 4 Le ss on 4 . P er so na l c ar e iS u p p o rt In te rv e n ti o n M an u al 149 iS u p p o rt In te rv e n ti o n M an u al 9 Put personal care items in the order of use and label them with large print words and different colours for Mariam to read. This is a good response. People with dementia may lose the ability to find items that are not obvious. Creating an ‘easy to find’ environment for them is very important. What do you think is the right response for Mohammed? 8 Ask their daughter-in-law to take Mariam from the table to the bathing room and assist her with washing and changing clothes. This is not the right answer. Mohammed needs to first find out what the reason is for her not doing the personal care before breakfast anymore. Also, instead of assuming, Mohammed needs to ask his wife first if she wants help from their daughter-in- law. Not asking may upset her. ANSWERS - PROVIDING EVERYDAY CARE Lesson 4. Personal care MODULE 4 AN SW ER S - P RO VI DI NG E VE RY DA Y CA RE • Le ss on 4 1. Check your understanding Promoting personal hygiene. iS u p p o rt In te rv e n ti o n M an u al 150 iS u p p o rt In te rv e n ti o n M an u al What do you think is the right response for Jane? 8 Tell Ted that he needs to be less messy, choose clothes for Ted and dress him. This answer is not helpful. It is not Ted’s fault that he is finding this task challenging. With some extra help, Ted may still be able to dress himself. 9 Remind Ted to lay out his clothes in the evening and encourage him to wear pants that do not need a belt and shoes that do not need laces. You are right! It will enable Ted to dress himself, which may also help improve his sense of self-worth. 8 Put Guoliang’s dentures in his mouth without asking. This is not the right answer. Lingling is completely taking over care tasks and not even asking his permission. This response may upset Guoliang. 9 Instruct Guoliang how to brush his teeth in a step-by- step manner and praise him when he is doing well. This is the best answer. Guoliang maintains a level of independence in this way, which may also help to improve his sense of self-worth. MODULE 4 AN SW ER S - P RO VI DI NG E VE RY DA Y CA RE • Le ss on 4 2. Check your understanding Getting dressed. 3. Check your understanding Promoting mouth care. What do you think is the right response for Lingling? iS u p p o rt In te rv e n ti o n M an u al 151 iS u p p o rt In te rv e n ti o n M an u al 9 Since the family notices that Feng thinks that his son-in-law is a stranger, Yuan decides to be with Feng while her son-in-law bathes him. Good advice! A person living with dementia may no longer recognize people they used to know, so giving them plenty of transition time to get familiar with people is very important. MODULE 4 AN SW ER S - P RO VI DI NG E VE RY DA Y CA RE • Le ss on 4 4. Check your understanding Resisting help with bathing. 8 They should say to Feng that he should be grateful for the help that he receives and if he continues to behave in this way, he will be sent to a long-term care facility. This is bad advice. Never threaten people with dementia in this way. Saying things like this will not help the situation and will make Feng feel very distressed. What do you think is the right response for Feng’s family? iS u p p o rt In te rv e n ti o n M an u al 152 1. Establishing routines for the person with dementia during the day When someone is living with dementia, it is important to create an environment that supports them to do the things that they like to do. This is also true for you. It is important to try and maintain routines and activities that are familiar to the person living with dementia, and to adapt them as their abilities change. Why is this lesson important? It is important to maintain routines and activities that are familiar to a person living with dementia to help create an enjoyable day. How will this lesson help me? By learning how to adapt routines and activities as the abilities of the person living with dementia change. What will I learn? 1. Establishing routines for the person with dementia during the day. 2. Adapting routines to the changing abilities of the person you care for. Lesson 5. An enjoyable day MODULE 4 Le ss on 5 . A n en jo ya bl e d ay iS u p p o rt In te rv e n ti o n M an u al 153 What is a routine? A routine is something that a person does every day or almost every day. It is important to try and continue the routine of the person living with dementia for as long as possible. This is reassuring and can reduce stress at home. Be aware of the person’s usual routine. If there has not been a routine, for example in the evening, then it is helpful to develop one and follow it regularly. This might include drinking a cup of tea, listening to soothing music, or saying prayers. It is helpful to have routines for other times of the day as well, such as immediately after getting up from bed in the morning, when having the midday meal or planning what to do in the afternoon. The simpler and easier these routines are to follow, the more likely they will reassure the person living with dementia and reduce stress at home. Morning time: starting the day It’s helpful to have a set time for waking up and then several things to do in sequence to get the day started. Think of bathing, brushing one’s teeth, getting dressed and then sitting down for breakfast. As dementia progresses, the person you care for will need help with each of these activities but one way to lower stress is to keep the basic routines as similar as possible. During the day, it’s also important to try and make time for activities that the person living with dementia enjoys, such as visiting a friend or another family member, going for a walk, reading, playing games, or listening to the radio. These activities will depend on the person’s prior interests and current abilities. In the early stages of dementia, your family member or friend may be able to do things that they like to do with minimal guidance. However, as the disease progresses, activities will need to be changed or modified so that they can still enjoy them. It’s important to be flexible and creative in figuring out the routines and then adapting them as needed over time. MODULE 4 Le ss on 5 . A n en jo ya bl e d ay iS u p p o rt In te rv e n ti o n M an u al 154 What suggestions do you have for Penny? Please select the correct answer from the responses below. „ If Penny suggests keeping to the routine by drinking tea first, it is likely that Martha will go for a walk afterwards. „ Penny should ask Martha what activities she is used to and in what order she would like to do them. „ Penny should force Martha to go for a walk because it was advised by the doctor. It is important to keep routines (something the person living with dementia does every day or almost every day) for as long as possible. This may help to avoid confusion, agitation, restlessness and boredom. It also helps to honour the person’s dignity. Think for a moment about how you might feel if your routines were changed or planned by another person. MODULE 4 Le ss on 5 . A n en jo ya bl e d ay 1. Check your understanding Morning routines. Keep in Mind Let’s look at an example Martha has dementia and is used to drinking tea immediately after getting ready in the morning. Her daughter Penny really wants to encourage her mother to walk every day, as recommended by her doctor. Penny is not aware of her mother’s usual routine, so when she tries to get Martha to go for a walk right after breakfast, Martha refuses. iS u p p o rt In te rv e n ti o n M an u al 155 z It is important to develop routines for morning activities and maintain them as long as possible. z Make adjustments as needed when the abilities of the person living with dementia change. 2. Adapting routines to the changing abilities of the person you care for It is important to adapt routines as the abilities of the person living with dementia change. Here are some common routines to establish during the day for a person living with dementia. In the morning Wake up at the same time every day z Adaptation: help might be needed to wake up because the person with dementia may not be able to set the alarm correctly. Have breakfast at a fixed time. In the earlier stages of dementia, your family member or friend might be able to make their own breakfast. z Adaptation: the person with dementia may need someone to lay out ingredients. Later on, they may need more help with preparing and eating breakfast. Performing grooming activities, such as brushing teeth, bathing/ cleaning, getting dressed. In the early stages, the person you care for may be able to do all of these activities without help. z Adaptation: items such as the toothbrush, toothpaste, etc. can be laid out in the bathroom in plain view to prompt the activity. In the later stages of dementia, it may be necessary for someone to do these activities for, or with, the person living with dementia. For more tips, please refer back to Lesson 4. Personal care in this module. MODULE 4 Le ss on 5 . A n en jo ya bl e d ay Keep in Mind iS u p p o rt In te rv e n ti o n M an u al 156 MODULE 4 Le ss on 5 . A n en jo ya bl e d ay What suggestions do you have for Penny? Please select the correct answer from the responses below. „ Penny should put away the baking and cooking pans and tell her mother that it’s just not possible to do this anymore. „ Penny should go shopping with her mother and buy easy to prepare cakes and cookies, “out of the box”, with limited added work to enable Martha to continue to do some cooking and baking. „ As Martha’s abilities change, Penny could plan some time during the afternoon to bake and cook with her mother. 2. Check your understanding Maintaining prior activities and interests during the day. Let’s look at an example Martha loves baking and used to prepare special cakes and cookies for family gatherings. Now that she has dementia, she sometimes forgets the ingredients and the order in which to put them in. At first, Martha uses a cookbook to help her continue baking but she finds this increasingly difficult. The cakes and cookies do not taste very good and have to be thrown away. Penny wants to help her mother keep up this activity. During the day It is helpful to plan activities that the person you care for enjoys doing, based on their prior interests and current abilities. iS u p p o rt In te rv e n ti o n M an u al 157 What suggestions do you have for Penny? Please select the correct answer from the responses below. „ Penny could ask another family member to help Martha. „ Penny could ask other people outside the family to walk with Martha to the community centre, such as a neighbour. „ Penny could tell her mother to do a quiet activity in the afternoons such as watching television or listening to the radio. It is important to respect the daily routines of the person you care for and maintain them for as long as possible. When this is no longer possible, adapt the routine to the best of your ability so that the key activities that are important to the person with dementia are maintained for as long as possible. MODULE 4 Le ss on 5 . A n en jo ya bl e d ay 3. Check your understanding Maintaining activities and interests outside the house. Keep in Mind What is sundowning? Sometimes people with dementia become more agitated, aggressive or confused in the late afternoon or early evening. This is often referred to as ‘sundowning’. It can be particularly distressing for carers. The exact cause of sundowning is not yet clear but a loss of routine might be one of the reasons. Try to give the person something meaningful to do at this time of day. Let’s look at an example Martha likes to go to a community centre every day from 12:00 until 15:00. She has lunch there and meets friends to do activities together. At first Martha walks there by herself but as her memory loss becomes more severe, she cannot find her way to the centre anymore. Penny asks another family member to take Martha to the centre and bring her back home. This works well for a while but eventually the family member is unable to take Martha. Penny does not know what to do since she cannot be with Martha every afternoon. iS u p p o rt In te rv e n ti o n M an u al 158 At bedtime z For the morning, afternoon and bedtime, establish and maintain routines for as long as possible, but be prepared to adapt these as the abilities of the person living with dementia change over time. z Printing out a list of daily routines can help. Do one for each day and put it up in a prominent place. MODULE 4 Le ss on 5 . A n en jo ya bl e d ay What suggestions do you have for Penny? Please select the correct answer from the responses below. „ Penny could read to Martha for 15 minutes before she goes to sleep. „ Penny should take the books out of Martha’s room. „ Penny should get some books that have more pictures than words or audiotapes for Martha. 4. Check your understanding Adapting routines. Tip At night, Martha is used to reading quietly for about 30 minutes before she goes to sleep. As her dementia progresses, she finds that she is no longer able to read. Sometimes she is just staring at her book. She increasingly finds reading confusing. Penny wants to adapt this routine to fit Martha’s current abilities. iS u p p o rt In te rv e n ti o n M an u al 159 Do you know any of the routines of the person with dementia that you care for? Please write down any ideas that you have about routines for the person you care for and how they can be adapted. MODULE 4 Le ss on 5 . A n en jo ya bl e d ay 1. Activity iS u p p o rt In te rv e n ti o n M an u al 160 You finished this lesson, well done! MODULE 4 Le ss on 5 . A n en jo ya bl e d ay Let’s review what you have learned z Establishing routines is important for people living with dementia. z Try to keep routines similar to the ones your family member or friend had before developing dementia. z Be prepared to adapt routines as necessary as the abilities of the person living with dementia change over time. iS u p p o rt In te rv e n ti o n M an u al 161 iS u p p o rt In te rv e n ti o n M an u al 9 If Penny suggests keeping to the routine by drinking tea first, it is likely that Martha will go for a walk afterwards. Right! It will help Martha keep her routine. 9 ✓Penny should ask Martha what activities she is used to and in what order she would like to do them. Indeed! Penny can learn Martha’s routines. However, this may only work if Martha is in the early or middle stages of dementia. Later on, Martha might not be able to remember her routines. 8 Penny should force Martha to go for a walk because it was advised by the doctor. This response is not so good because it may make Martha feel agitated and upset. 1. Check your understanding Morning routines. ANSWERS - PROVIDING EVERYDAY CARE Lesson 5. An enjoyable day MODULE 4 AN SW ER S - P RO VI DI NG E VE RY DA Y CA RE • Le ss on 5 What suggestions do you have for Penny? iS u p p o rt In te rv e n ti o n M an u al 162 iS u p p o rt In te rv e n ti o n M an u al 8 ✗Penny should put away the baking and cooking pans and tell her mother that it’s just not possible to do this anymore. This is not very helpful. Penny has not tried to come up with an alternative to help her mother and it may make Martha feel upset. 9 Penny should go shopping with her mother and buy easy to prepare cakes and cookies, “out of the box”, with limited added work to enable Martha to continue to do some cooking and baking. This is a good suggestion. It respects Martha’s routine but adapts the activity to her current abilities. 9 As Martha’s abilities change, Penny could plan some time during the afternoon to bake and cook with her mother. This is an excellent plan for the future! It allows Martha to continue her routine with support as needed. MODULE 4 AN SW ER S - P RO VI DI NG E VE RY DA Y CA RE • Le ss on 5 2. Check your understanding Maintaining activities and interests during the day. What suggestions do you have for Penny? iS u p p o rt In te rv e n ti o n M an u al 163 iS u p p o rt In te rv e n ti o n M an u al 9 Penny could ask another family member to help Martha. This is a good idea. If others can come on a regular basis, this is the best solution for Martha as it maintains her routine and adapts to Martha’s changing abilities. 9 Penny could ask other people outside the family to walk with Martha to the community center such as a neighbour. This is a good response. Family is not always available and sometimes other people don’t know how they can help. This is a concrete way that Penny could ask for help. 8 Penny could tell her mother to do a quiet activity in the afternoons like watching television or listening to the radio. This is not likely to be a good solution at this time. It isolates Martha from other people and doesn’t allow her to engage in the activities that she enjoys. It might be a better solution in the later stages of dementia, when Martha’s abilities change. MODULE 4 AN SW ER S - P RO VI DI NG E VE RY DA Y CA RE • Le ss on 5 3. Check your understanding Maintaining activities and interests outside the house. What suggestions do you have for Penny? iS u p p o rt In te rv e n ti o n M an u al 164 iS u p p o rt In te rv e n ti o n M an u al 9 Penny could read to Martha for 15 minutes before she goes to sleep. This is a good idea. It helps Martha to continue enjoying reading but adapts the activity to her abilities. 8 Penny should take the books out of Martha’s room. This is not a good response because it does not recognise how important reading is to Martha. Penny should recognise that her mother and her can still share this routine; it just needs to be adapted. 9 Penny should get some books that have more pictures than words or audiotapes for Martha. This is a helpful adaption for people in the later stages of dementia who liked to read but find that they are not able to read books with a lot of words. 4. Check your understanding Adapting routines. MODULE 4 AN SW ER S - P RO VI DI NG E VE RY DA Y CA RE • Le ss on 5 What suggestions do you have for Penny? M od ul e 5 . D ea lin g wi th b eh av io ur ch an ge s DEALING WITH BEHAVIOUR CHANGES Lesson 1. Introduction to behaviour changes Lesson 2. Memory loss Lesson 3. Aggression Lesson 4. Depression, anxiety or apathy Lesson 5. Difficulty sleeping Lesson 6. Delusions and hallucinations Lesson 7. Repetitive behaviour Lesson 8. Walking and getting lost Lesson 9. Changes in judgement Lesson 10. Putting it all together 5 MODULE iS u p p o rt In te rv e n ti o n M an u al 166 MODULE 5 Why is this lesson important? Dementia changes the way that people behave, think or act. This can be distressing or upsetting not only for the person with dementia, but also for their families and carers, like you. How will this lesson help me? This lesson helps to improve your skills to prevent and cope with behaviour changes. What will I learn? 1. Behaviour changes that may be particularly stressful. 2. Understanding the cycle of behaviour change. 3. Different approaches to respond to behaviour changes. Lesson 1. Introduction to behaviour changes 1. Behaviour changes that may be particularly stressful Dementia changes the way people behave, think or act. This not only affects the person living with dementia, but can also be distressing and upsetting for carers, like you. ”Any behaviour that gets you or the person you care for upset is stressful.” In this introduction you will learn: z How you can identify behaviours that are potentially upsetting, stressful or difficult for you and the person you care for. z How you might handle behaviour changes. z How you might change circumstances to reduce or prevent behaviour changes. Le ss on 1 . I nt ro du ct io n to b eh av io ur ch an ge s iS u p p o rt In te rv e n ti o n M an u al 167 MODULE 5 Does the person you care for ever experience any of the following behaviour changes? Please select any that apply. Forgetting or losing things, not being able to recall recent events or remember dates and days of the week. Talking or acting in a threatening way, or doing things that make you feel frightened. Feeling sad, worried, frightened, frustrated or angry, being unusually emotional, crying, agitated or restless, withdrawn, unhappy, apathetic or reacting slowly. Restless at night, waking you or other family members up. Misinterpreting the world, having fixed false beliefs, things a person sees or hears that are not there, or becomes suspicious of those around them. „ Memory loss „ Aggression „ Depression, anxiety or apathy „ Difficulty sleeping „ Delusions and hallucinations: seeing or hearing things that are not there Behaviour changes Example 1. Activity Le ss on 1 . I nt ro du ct io n to b eh av io ur ch an ge s iS u p p o rt In te rv e n ti o n M an u al 168 MODULE 5 Repeating a question or an action over and over. Continuously walking around, leaving the house and getting lost. Saying the wrong thing at the wrong time, acting inappropriately in a situation, not understanding own limitations. None of these symptoms are present at this point in time. „ Repetitive behaviour: doing things over and over „ Wandering: walking around a lot „ Changes in judgement „ Not at this time Behaviour changes Example 1. Activity Many things can cause behaviour changes that are upsetting to you or the person you care for. This can have a bad effect on your relationship with the person you care for. It can even make you feel sad, angry, confused, or anxious. In some instances, you might even feel as though you can’t cope with the situation. In this lesson you will learn what you can do to reduce or prevent these situations. Remember Le ss on 1 . I nt ro du ct io n to b eh av io ur ch an ge s iS u p p o rt In te rv e n ti o n M an u al 169 MODULE 5 Understanding any behaviour change and what happens before and after the behaviour is very important. Sometimes you can reduce or even prevent certain behaviours. If you pay attention and understand what happens before or “triggers” the behaviour, this can help you to reduce or prevent the behaviour. Let’s look at the following example Kayla has dementia like the person you care for. Her husband Howard is taking care of her, like you are caring for your family member or friend. Howard often asks Kayla if she can remember who came to visit last week or what she had for dinner yesterday. Kayla cannot remember these things and gets agitated. 2.Understanding the cycle of behaviour change The diagram below shows what’s happening. “Howard is asking Kayla questions” “Howard feels frustrated” What happens before? Carer’s response to the behaviour Behaviour “Kayla can’t answer the questions and gets agitated” Le ss on 1 . I nt ro du ct io n to b eh av io ur ch an ge s iS u p p o rt In te rv e n ti o n M an u al 170 MODULE 5 What happens before the behaviour? What do you think happens before Kayla gets agitated that you might be able to change? Below are some examples. 1. Howard asks questions that Kayla cannot answer. 2. The tone of voice that Howard uses to ask these questions makes Kayla feel nervous. Now you try the next one. Please fill in your ideas on what comes before Kayla gets agitated in the box below. When you are done, check the answer section at the end of this lesson for more ideas. 1. Check your understanding Identifying what happens before the behaviour. Le ss on 1 . I nt ro du ct io n to b eh av io ur ch an ge s iS u p p o rt In te rv e n ti o n M an u al 171 MODULE 5 2. Check your understanding Different ways of responding to behaviour change. Now let’s look at Howard’s response So, what are we trying to do? We are trying to separate what comes before the behaviour and what the carer’s response is after the behaviour. How does Howard respond in this example? Howard gets frustrated because his wife Kayla forgot who came to visit and what she had for dinner. Howard can choose to change his response. Here are some responses, some are good, others are not. Please check what you think could be good responses. Howard could: „ Show that he is frustrated. „ Take a deep breath. „ Show his irritation by saying: “I already answered that, please stop bothering me”. „ Remind himself that his wife has dementia and cannot help that she forgets things. She is not forgetting on purpose. „ Next time, remember that asking her such questions will only cause frustration, not only for him, but also for his wife. „ Work with Kayla to record significant family and social events in a family diary. Le ss on 1 . I nt ro du ct io n to b eh av io ur ch an ge s iS u p p o rt In te rv e n ti o n M an u al 172 MODULE 5 3. Different approaches work at different times. What if Howard’s approach doesn’t work the first time? Different approaches work at different times, so Howard should not give up! Howard could try several approaches until he finds one that works. Here are some examples of what Howard could do: z He can ask other people’s advice, for example his health care provider. z He can also ask someone at the Alzheimer’s Association (a community based organisation that provides support for people with dementia and their carers) in his country: https://www.alz.co.uk/associations. z He can search for information on the internet. Le ss on 1 . I nt ro du ct io n to b eh av io ur ch an ge s iS u p p o rt In te rv e n ti o n M an u al 173 MODULE 5 Now think about your own situation It is important to apply what you have just learned to your own situation with the person you care for. Use the spaces below, like a diary. 2. Activity What could you do to change what happened before the behaviour in order to reduce or prevent it? What is the behaviour that was the most distressing or upsetting to you in the past month? How could you respond in that situation? Le ss on 1 . I nt ro du ct io n to b eh av io ur ch an ge s iS u p p o rt In te rv e n ti o n M an u al 174 MODULE 5 Let’s review what you have learned z People with dementia may experience behaviour changes that are distressing or upsetting to them or those around them. z It is helpful to identify what happens before the stressful behaviour to understand what might cause it or make it worse. z It is also helpful to identify how you usually respond, what you feel or what you do. z Take a deep breath and think about the best ways to respond that will be the least distressing to you and the person you care for. z Try different responses and approaches, as the first one does not always work. z Seek professional help if you cannot manage a situation. You finished this lesson, well done! Le ss on 1 . I nt ro du ct io n to b eh av io ur ch an ge s iS u p p o rt In te rv e n ti o n M an u al MODULE 5 175 iS u p p o rt In te rv e n ti o n M an u al z Kayla has dementia. Remembering who came to visit last week is difficult for her. z Kayla has dementia and cannot remember what she had for dinner. 1. Check your understanding Identifying what happens before the behaviour. ANSWERS- DEALING WITH BEHAVIOUR CHANGES Lesson 1. Introduction to behaviour changes AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 1 iS u p p o rt In te rv e n ti o n M an u al MODULE 5 176 iS u p p o rt In te rv e n ti o n M an u al AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 1 8 Show that he is frustrated. This is not the best response. Showing that he is frustrated is an inappropriate way to deal with the stressful behaviour, it may even make the person living with dementia irritable. 9 ✓Take a deep breath. This is a good response. It shows that Howard is trying to control his frustration. 8 Show his irritation by saying: “I already answered that, please stop bothering me”. This reaction is not so good, because Howard’s irritability may upset Kayla even more. 9 ✓Remind himself that his wife has dementia and cannot help that she forgets things. She is not forgetting on purpose. This is a good response, because Howard recognises that Kayla is living with dementia. 9 Next time, remember that asking her such questions will only cause frustration, not only for him, but also for his wife. This is a good response, because it may prevent this frustrating situation. 9 Work with Kayla to record significant family and social events in a family diary. This is a good response, because they can revisit the events from time to time if Kayla is missing family members and friends. 2. Check your understanding Different ways of responding to behaviour change. What are some of the ways that Howard could respond? iS u p p o rt In te rv e n ti o n M an u al MODULE 5 177 Why is this lesson important? Memory loss can be frustrating for the person living with dementia and the carer. How will this lesson help me? In this lesson you will practice several ways to respond to memory loss, and find out what may help you deal with the person’s increasing forgetfulness. What will I learn? 1. What is memory loss? 2. How to respond to memory loss? Lesson 2. Memory loss 1. What is memory loss? People with dementia will increasingly lose their memory over time. In the beginning, they may forget recent events, where they put their keys, their wallet or a particular piece of paper. They find it harder to remember phone numbers, important dates and appointments. However, past memories, such as childhood memories, are often preserved for a longer period of time. Le ss on 2 . M em or y l os s iS u p p o rt In te rv e n ti o n M an u al MODULE 5 178 1. What is memory loss? People with dementia will increasingly lose their memory over time. In the beginning, they may forget recent events, where they put their keys, their wallet or a particular piece of paper. They find it harder to remember phone numbers, important dates and appointments. However, past memories, like childhood memories, are often preserved for a longer period of time. Do s t e person you care for som times forget things? If so, what kinds of things do they forget? Please write them down. 1. Activity Le ss on 2 . M em or y l os s iS u p p o rt In te rv e n ti o n M an u al MODULE 5 179 How would you advise Maya to deal with her mother’s memory loss? Please check all the responses that you feel are appropriate from the list below. „ Ask a neighbour to go with Anne once a week to the market to buy groceries. „ Create a memory aid together with Anne, e.g. a list of groceries that Anne needs to buy, and put the list in a place where it can be seen, so that it is easy to access. „ Go out and buy groceries immediately. „ Ask: “Mom, what’s wrong with you, there is no food in the house”. „ Sit down with Anne and make a list of groceries. Go shopping together. 1. Check your understanding Forgetting to buy groceries. 2. How to respond to memory loss? In this lesson you can practice several ways to respond to memory loss, and find out what may help you deal with it. Let’s have a look at an example Anne is living with dementia. She has a daughter named Maya. They live very close to each other. When Maya goes to visit Anne’s house, she notices that the fridge or cupboard is empty. Anne often forgets what she usually buys from the market. The person you care for might also forget other things. The same goes for Anne. Le ss on 2 . M em or y l os s iS u p p o rt In te rv e n ti o n M an u al MODULE 5 180 What do you think Maya’s response should be? Please check all the responses that you feel are appropriate from the list below. „ Tell her mother what to do over the phone. „ Ask her mother what she usually does on that given day. For example, Monday is wash day; Thursday is going to the market day. „ Move in with her mother. „ Go straight over and take charge of the situation, by ordering her mother around. „ Plan to visit Anne every weekend and write out to-do lists for every day of the week. „ Hire someone to stay with her mother all the time. „ Ask her mother while on the phone to get a pencil and paper. Talk through the plan for the day together. 2. Check your understanding Forgetting daily activities. Let’s look at another example Maya and Anne are talking on the phone. Maya notices that Anne often forgets what she normally does during the day. Maya is impatient with Anne, and tells her mother, “this is getting worse”. Le ss on 2 . M em or y l os s iS u p p o rt In te rv e n ti o n M an u al MODULE 5 181 How do you think Maya should respond to this situation? Please check all the responses that you feel are appropriate from the list below. „ Maya puts notes near the clock when her mother needs to take a pill. „ Maya says, “Mom, how could you forget your medications?”, and “you know you really need them to stay healthy!” „ Maya goes through the medicine cabinet, sits down and cries about her mother’s memory loss. „ Maya goes over the medications with her mom. She purchases a pill box, and puts the pills in the box at the right day and time and calls her mom every day to instruct her to take her medications. 3. Check your understanding Forgetting medication. Sometimes memory loss can be more serious, like in the next example. Let’s look at an example Maya comes to visit and discovers that Anne is having trouble remembering which medications to take and at what time.Le ss on 2 . M em or y l os s iS u p p o rt In te rv e n ti o n M an u al MODULE 5 182 Let’s look at your own situation It is important to apply what you have learned to your own situation. How could you respond to help the person you care for deal with their memory loss? Write down some ideas. 2. Activity Le ss on 2 . M em or y l os s iS u p p o rt In te rv e n ti o n M an u al MODULE 5 183 z Memory loss is very common for people with dementia. z Memory loss can be stressful to deal with. z In case of memory loss, try a memory aid like a note, pill- box, reminder/alarm, etc. z If possible, involve the person you care for to find the best way to support them in case of memory problems. z It is important to remember that the person living with dementia is not to blame, because he/she can’t help that they forget. z When one approach doesn’t work, try another one. z Realize there may be good and bad days. z Remind yourself that memory loss is part of the disease. z Take a deep breath and think about the best ways to respond that will be the least distressing to you and the person you care for in the case of memory loss. You finished this lesson, well done! Let’s review what you have learned Le ss on 2 . M em or y l os s iS u p p o rt In te rv e n ti o n M an u al MODULE 5 184 iS u p p o rt In te rv e n ti o n M an u al Relaxation exercise - Neck movements ANSWERS - DEALING WITH BEHAVIOUR CHANGES Lesson 2. Memory loss 9 Ask a neighbour to go with Anne once a week to the market to buy groceries. This might be helpful. Anne will have groceries and a nice visit with the neighbour. 9 ✓Create a memory aid together with Anne, e.g. a list of groceries that Anne needs to buy, and put it in a prominent place, so that the list is easy to access. This is a good response. It addresses Anne’s memory loss and may become a weekly shared pleasant activity. 8 Go out and buy groceries immediately. This answer is not so good because it is a panic reaction and a one-time solution. It does not solve the problem at hand. 8 Ask: “Mom, what’s wrong with you, there is no food in the house”. This answer is not so good because Anne cannot help that she forgets to buy food and may feel embarrassed that she has done something wrong. It does not improve the situation. 9 Sit down with Anne and make a list of groceries. Go shopping together. This answer may be a good one because Maya is addressing her mother’s needs. However, she might first want to try another approach. For example, with a list of groceries that her mother may still be able to go shopping without help. 1. Check your understanding Forgetting to buy groceries. AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 2 What would you advise Maya? iS u p p o rt In te rv e n ti o n M an u al MODULE 5 185 iS u p p o rt In te rv e n ti o n M an u al Relaxation exercise - Neck movements 8 Tell her mother what to do over the phone. This response is not so good because her mother may not understand or be able to follow a phone conversation. 9 Ask her mother what she usually does on that given day. For example, Monday is wash day; Thursday is going to the market day. This response may be a good one because Maya can use this information to remind her mother. 8 Move in with her mother. This is not the right response. There are several other less drastic approaches that Maya has not yet tried. 8 Go straight over and take charge of the situation, by ordering her mother around. This response is not so good because it is a one-time solution and does not solve the problem at hand. 9 Plan to visit Anne every weekend and write out to-do lists for every day of the week. This is a good response because it may help her mother to remember. 8 Hire someone to stay with mother all the time. This is not the right response. There are several less drastic approaches that Maya has not tried yet. 9 Ask her mother while on the phone to get a pencil and paper. Talk through the plan for the day together. This is a good response because it may help her mother to remember. Maya could call her mother every morning at a certain time, and ask her to get a pencil and paper and to plan her day together. 2. Check your understanding Forgetting daily activities. What do you think Maya’s response should be? AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 2 iS u p p o rt In te rv e n ti o n M an u al MODULE 5 186 iS u p p o rt In te rv e n ti o n M an u al Relaxation exercise - Neck movements 9 Maya puts notes near the clock when her mother needs to take a pill. This may be good to do because a memory aid could help Anne remember to take her pills. 8 Maya says, “Mom, how could you forget your medications?”, and “You know you really need them to stay healthy!” This response is not helpful because Anne cannot help that she forgets to take her medications. Memory loss is part of her disease. 9 Maya goes over the medications with her mom. She purchases a pill box, and puts the pills in the box at the right day and time and calls her mom every day to instruct her to take her medications. This is a good response because this memory aid might help Anne to take medications at the right day and time. Some pill reminder boxes come with alarms that are pre-set to remind the person to independently take their medications. 9 Maya goes through the medicine cabinet, sits down and cries about her mother’s memory loss. This is not the way to deal with her mother’s memory loss. Getting upset will not solve her mother’s problem of forgetting to take medications. 3. Check your understanding Forgetting medication. How should Maya respond? AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 2 iS u p p o rt In te rv e n ti o n M an u al MODULE 5 187 Why is this lesson important? From time to time, people with dementia may become angry, aggressive or violent. This is often one of the most difficult things to cope with for carers. How will this lesson help me? This lesson helps to understand possible causes of aggression and improve your skills to prevent or deal with aggression. What will I learn? 1. Why does aggression happen? 2. How to respond to aggressive behaviour? 3. How to deal with ongoing aggression? Lesson 3. Aggression 1. Why does aggression happen? From time to time, people with dementia may become angry, aggressive or violent. Aggression can happen for a variety of reasons. It can be due to unmet needs, illness such as a urinary tract infection, medication combinations or side effects, or something that is happening around the person with dementia. In addition, people with dementia may have difficulty understanding others, judging social situations, controlling their feelings or expressing themselves like they did before. They may also have personality or mental health changes that contribute to aggressive behaviours. At times, aggression is displayed towards people known to the person living with dementia. At other times it can be with strangers. Aggression is often one of the most difficult things to cope with for carers. Le ss on 3 . A gg re ss io n iS u p p o rt In te rv e n ti o n M an u al MODULE 5 188 Let’s look at your situation Check your answer, yes or no. Does the person you care for ever talk to you or other people in an aggressive way? „ Yes „ No Does the person you care for ever act aggressively towards you or other people? „ Yes „ No 1. Activity WARNING! If the person is suddenly behaving aggressively, there may be an underlying cause (for example a urinary infection) that should be investigated by a doctor. Le ss on 3 . A gg re ss io n iS u p p o rt In te rv e n ti o n M an u al MODULE 5 189 Do you remember the cycle of behaviour change? Just like we mentioned in Lesson 1. Introduction to behaviour changes, it is important to break down the cycle of stressful responses into three parts in order to help you deal with them. What happens before? Carer’s response to the behaviour Behaviour Here they are Le ss on 3 . A gg re ss io n iS u p p o rt In te rv e n ti o n M an u al MODULE 5 190 Neil wants to assist his father-in-law, Amit, in taking a bath because Amit needs to see a doctor. Neil says: “it is time for your bath”. Amit refuses. Neil has little time and tugs on his father-in-law’s arm. He says: “you need to bathe because you’re going to see the doctor.” Amit pulls his arm back and resists. He is much stronger than Neil. Neil tugs it again and says angrily: “you must take a bath because you are going to the doctor and need to be clean”. Amit gets very angry, shouts and even tries to shove Neil, who becomes upset. Amit angrily refuses to take a bath Can you break down the cycle of behaviour change in this example into its three parts? Please fill in the boxes below. What comes before the behaviour? What is the stressful behaviour? What is Neil’s response? 1. Check your understanding Understanding aggressive behaviour. Let’s see how the cycle works with a different example. Le ss on 3 . A gg re ss io n iS u p p o rt In te rv e n ti o n M an u al MODULE 5 191 „ Force his father-in-law to start bathing anyway. „ Maintain the dignity and privacy of his father-in-law. He could keep him in a robe or towel until he actually takes a bath. „ Play soothing music that Amit likes. „ Walk away and come back later. „ Explain logically why he should bathe. „ Put himself in Amit’s shoes and try to understand why Amit might not want to take a bath. 2. Check your understanding Responding to aggressive behaviour. 2. How to respond to aggressive behaviour? There are many ways to respond to aggressive behaviour. Some are good, others are not. In the exercise below you can learn more. How could Neil react differently? Please indicate what you think are good responses. Neil could: Le ss on 3 . A gg re ss io n iS u p p o rt In te rv e n ti o n M an u al MODULE 5 192 „ Make sure that there is enough time so that it is not so stressful. Rather than trying to bathe Amit right before the doctor’s appointment, when things are rushed, Neil might try to assist with bathing the day before. „ Before the next bath time, identify the best time of day for Amit to take a bath and find out whether he prefers a bath or a shower. „ When bathing Amit, keep a towel over his shoulders to help him maintain dignity and to keep him warm. „ Ask for someone else to help with Amit’s bath time. „ Help Amit with a bed bath by using warm, wet towels with soap without taking Amit to the bath. „ Say in an irritated voice: “I have already answered that, please stop bothering me.” “You must take a bath!” 3. Check your understanding (continued) Responding to aggressive behaviour. Le ss on 3 . A gg re ss io n iS u p p o rt In te rv e n ti o n M an u al MODULE 5 193 What could Neil do if his approach does not work the first time? Check all that apply. „ Neil could try several approaches until he finds one that works. „ Neil could get suggestions from others. 4. Check your understanding Ongoing aggressive behaviour. 3. How to deal with ongoing aggression? Sometimes your first approach may not work. Don't get discouraged, different responses may work at different times. Take a deep breath and think about the most positive ways to respond that will be the least distressing to you and the person you care for. Remind yourself that aggression can be a part of the dementia, or a reaction to the disease. Reminder Different responses may work at different times. Le ss on 3 . A gg re ss io n iS u p p o rt In te rv e n ti o n M an u al MODULE 5 194 Let’s look at your own situation It is important to apply what you have just learned to your own situation. Has the person that you care for ever been aggressive towards you? If so, describe the last time that this happened in the spaces below. 2. Activity What happened before the person you care for became aggressive? What could you do to change your response to this behaviour? What could change in the environment to make it more calming? Le ss on 3 . A gg re ss io n iS u p p o rt In te rv e n ti o n M an u al MODULE 5 195 z Aggression like shouting, shoving or pushing can happen to carers of people with dementia. z Aggression can be very upsetting for the person living with dementia as well as the carer. z Try to change the environment to make it more calming. z Try to maintain the dignity of the person living with dementia; do not force them to engage in activities that they do not wish to do. z If one approach does not work, try another one. z Realize that there may be worse, but also better moments. z Remind yourself that aggression can be a part of the dementia, or a reaction to the disease. z If the person is suddenly behaving aggressively, there may be an underlying cause (for example a urinary infection) that should be investigated by a doctor. z Take a deep breath and think about the most positive ways to respond that will be the least distressing to you and the person you care for. z If the person you care for continues to show aggression, there are many resources available on the internet. For example, look at the website of the Alzheimer Association in your country (www.alz.co.uk/associations). You finished this lesson, well done! Let’s review what you have learned Le ss on 3 . A gg re ss io n iS u p p o rt In te rv e n ti o n M an u al MODULE 5 196 iS u p p o rt In te rv e n ti o n M an u al Relaxation exercise - Neck movements ANSWERS - DEALING WITH BEHAVIOUR CHANGES Lesson 3. Aggression AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 3 Amit angrily refuses to take a bath Can you break down the cycle of behaviour change in this example into its three parts? Please fill in the boxes below. What comes before the behaviour? Neil tugs Amit’s arm and says angrily: “you must take a bath because you are going to the doctor and need to be clean”. Amit gets very upset and shouts and even tries to shove Neil. Neil becomes upset. What is the stressful behaviour? What is Neil’s response? 1. Check your understanding Understanding aggressive behaviour. iS u p p o rt In te rv e n ti o n M an u al MODULE 5 197 iS u p p o rt In te rv e n ti o n M an u al Relaxation exercise - Neck movements AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 3 8 Force his father-in-law to start bathing anyway. This is not helpful, because it does not change the situation and may only make it worse. 9 Maintain the dignity and privacy of his father-in-law. He could keep him in a robe or towel until he actually takes a bath. Correct. Maintaining dignity and privacy is always a good idea when caring for someone with dementia. By doing this Neil makes sure that the person living with dementia is comfortable. 9 Play soothing music that Amit likes. Yes. Though it may take extra time to arrange the music, this option may help sooth both Neil and Amit. This may create relaxation and less negative responses from both of them. 9 Walk away and come back later. This is a good response. It gives Neil time to calm down, take a deep breath and come up with a new strategy. It also gives Amit time to forget about the negative encounter and he may be in a better mood if approached differently later. 8 Explain logically why he should bathe. This answer is not so good. It does not take into account that Amit may not be able to understand because of his dementia. 2. Check your understanding Responding to aggressive behaviour. How could Neil react differently? Neil could: iS u p p o rt In te rv e n ti o n M an u al MODULE 5 198 iS u p p o rt In te rv e n ti o n M an u al Relaxation exercise - Neck movements AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 3 9 Make sure that there is enough time so that it is not so stressful. Rather than trying to bathe Amit right before the doctor’s appointment, when things are rushed, Neil might try to assist with bathing the day before. Though taking more time may not always be feasible, this option is good. It may reduce tension for Neil and Amit. 9 Before the next bath time, identify the best time of day for Amit to take a bath and find out whether he prefers a bath or shower. This answer is good. Keeping people with dementia to their regular routines shows attention to their preferences. 9 When bathing Amit, keep a towel over his shoulders to help him maintain dignity and to help keep him warm. This answer is good. Amit could be embarrassed to be naked in front of his son-in-law or the temperature of the water or the room could be too cold. It’s important to look for ways to make the situation more pleasant. 9 ✓Neil could ask for someone else to help with Amit’s bath time. This answer is good. Sometimes the person living with dementia is more comfortable with one family member helping them bathe than another. Sometimes even a stranger might find it easier as the person living with dementia might be less embarrassed than with a family member. 2. Check your understanding (continued) Responding to aggressive behaviour. iS u p p o rt In te rv e n ti o n M an u al MODULE 5 199 iS u p p o rt In te rv e n ti o n M an u al Relaxation exercise - Neck movements AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 3 9 Neil could help Amit with a bed bath by using warm, wet towels with soap without taking Amit to the bath. This answer is good. If the person living with dementia is afraid of the bath, or running water, this option will help relieve their distress and can sometimes be used instead of baths. There are also products such as dry shampoo and cleaning products used for young children that might help. 8 Say in an irritated voice: “I have already answered that, please stop bothering me.” “You must take a bath!” This is not helpful, because it does not change the situation. 2. Check your understanding (continued) Responding to aggressive behaviour. iS u p p o rt In te rv e n ti o n M an u al MODULE 5 200 iS u p p o rt In te rv e n ti o n M an u al Relaxation exercise - Neck movements AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 3 What could Neil do if his approach does not work the first time? 9 Neil could try several approaches until he finds one that works. 9 Neil could get suggestions from others. There may be other approaches that you could try. This can be information from people that you know or that is available on the Internet. See for example: http://www.alz.co.uk/ 3. Check your understanding Ongoing aggressive behaviour. iS u p p o rt In te rv e n ti o n M an u al MODULE 5 201 Why is this lesson important? Dementia may affect a person’s mood and interest in daily activities, people and events. How will this lesson help me? This lesson helps you to understand the possible causes of depression and anxiety, while improving your skills to prevent or reduce mood problems. What will I learn? 1. What are depression, anxiety and apathy? 2. How to respond when a person living with dementia is feeling depressed or anxious? 3. How to respond when a person living with dementia loses interest in daily activities? Lesson 4. Depression, anxiety and apathy 1. What are depression, anxiety and apathy? Depression, anxiety and apathy are common among people with dementia. Dementia may affect a person’s mood and interest in daily activities, people and events. This may be due to changes in the brain, but also to the emotional reaction of what is happening to them. People with dementia may feel sad, worried, frightened, frustrated or angry, may cry and be unusually emotional, agitated or restless. They may also be withdrawn, unhappy and react slowly. These are all behaviours of depression and apathy. Anxiety can lead to behaviours similar to depression. People with dementia can be worried about being left alone, who is handling their money, or where lost items have gone to and become anxious. Le ss on 4 . D ep re ss io n, an xie ty an d ap at hy iS u p p o rt In te rv e n ti o n M an u al MODULE 5 202 2. How to respond when a person living with dementia is feeling depressed or anxious? Let’s look at an example Juan has dementia and lives with his sister, Isabel. On several occasions Isabel has found Juan sitting in his favourite chair looking very sad, hunched over, and sometimes crying. Isabel tries to cheer him up. Unfortunately, everything that she tries does not seem to work. How should Isabel handle this situation? Below are some things that Isabel may do or say. Please select all responses that you think might work. „ Walk over to Juan and say in a calm, reassuring tone, “I have some ideas about how you can feel better, let’s talk. „ Say: “Juan, what’s the matter with you? I’m tired of seeing you like this. Just get up and do something.” „ Say: “men don’t cry and get sad, we used to have so much fun together.” „ Go over and touch Juan on the arm or shoulder. “I know that you feel bad, I do too. What we’re going through is really hard.” „ Sit with Juan and suggest that they do a pleasant activity together. „ Sigh and walk away, thinking that there is nothing that she can do. 1. Check your understanding Responding to a person with dementia who is feeling depressed. Le ss on 4 . D ep re ss io n, an xie ty an d ap at hy iS u p p o rt In te rv e n ti o n M an u al MODULE 5 203 Here is another example Emma has dementia and lives with her family. Benjamin is her grandson. Because Benjamin’s parents work and he is in school, he is the main carer in the afternoons. Benjamin is watching a TV show while his grandmother is sewing. The TV show has loud music and vulgar language. Suddenly, his grandmother jumps up and paces up and down the room, wringing her hands. She is muttering to herself “I need to go home”, “I need to go home”. How do you think that Benjamin should respond to this situation? Below are some things that Benjamin may do or say. Please select all the correct responses. „ Think “Grandmother cannot help the way that she behaves.” „ Say “Grandmother! Sit down, you’re making it impossible for me to watch my show.” „ Give his grandmother a smile and reassure her that she is safe. „ Ask his grandmother to help him with something. „ Turn up the volume to drown out the muttering and turn away from her. „ Look for his headphones and encourage his grandmother to go back to her sewing so that she is busy. 2. Check your understanding Responding to a person with dementia who is feeling anxious. Le ss on 4 . D ep re ss io n, an xie ty an d ap at hy iS u p p o rt In te rv e n ti o n M an u al MODULE 5 204 „ Sofia walks over to George and says “I’m sick and tired of this laziness, get up and let’s go". „ Sofia goes over to George and strokes his hair. She says that she loves him and that she would like to do something together. George turns to her and smiles weakly. „ Sofia says: “you never do anything I want anymore, it is impossible to keep on living with you. I don’t know what I’m going to do.” „ Sofia says: “let’s go for a walk together, I know how much you would enjoy getting out of the house for a little while.” „ Sofia closes the door and doesn’t try to engage with George anymore. „ Sofia thinks back to what George used to really like doing and thinks how she could help, for example by reading the newspaper to him, cooking his favourite dish or visiting a shop to let him straighten the shelves with the shopkeeper’s permission. 3. Check your understanding Responding to a person with dementia who loses interest in daily activities. 3. How to respond when a person living with dementia loses interest in daily activities? Let’s look at an example George has dementia and lives with his wife Sofia. George used to be a shopkeeper and was very active in the community. Recently, George has been sitting in a chair near a large window and staring blankly outside, this type of behaviour can also be known as apathy where the person with dementia has trouble becoming interested in doing something. Sofia has become very concerned, because this is not like him. He seems removed and distant from her. One day, she walks in and says “George, shall we go out for a walk?” He does not respond. How do you think Sofia should react? Please check all the responses that you think are appropriate. Le ss on 4 . D ep re ss io n, an xie ty an d ap at hy iS u p p o rt In te rv e n ti o n M an u al MODULE 5 205 Let’s look at your own situation It is important to apply what you have learned to your own situation. The spaces below are for you, like a diary. Does the person living with dementia ever show changes in mood or interest, or any signs of depression or anxiety? If so, what do these changes look like? What could you do to prevent this? How could you respond in a different way? 1. Activity Le ss on 4 . D ep re ss io n, an xie ty an d ap at hy iS u p p o rt In te rv e n ti o n M an u al MODULE 5 206 z Signs of depression and anxiety are common in people with dementia. z Changes in mood can be very upsetting to the person living with dementia and the carer. z People with mood problems need extra love and support. z It is important to identify ways to stop or reduce mood changes, by comforting and getting the person interested in things that they like to do. z If one approach doesn’t work, try another one. z In case of mood changes, remind yourself that they may be part of the disease or a reaction to the disease. z Take a deep breath and think about the best ways to respond that will be the least distressing to you and the person you care for in case they have mood problems or experience a loss of interest. z If the symptoms persist for a longer period, the person you care for is in danger, or you feel otherwise unable to manage, please seek help from your health care professional. Let’s review what you have learned It is important to recognize when things get serious. If the person you care for has serious and constant mood changes or you think that they are in danger of harming themselves, it is important to seek medical advice right away. Remember You finished this lesson, well done! Le ss on 4 . D ep re ss io n, an xie ty an d ap at hy iS u p p o rt In te rv e n ti o n M an u al MODULE 5 207 iS u p p o rt In te rv e n ti o n M an u al ANSWERS - DEALING WITH BEHAVIOUR CHANGES Lesson 4. Depression, anxiety and apathy AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 4 9 Walk over to Juan and say in a calm, reassuring tone, “I have some ideas for how you can feel better, let’s talk. This is a good response because Juan needs more support due to the changes in his mood. 8 Say: “Juan, what’s the matter with you? I’m tired of seeing you like this. Just get up and do something.” This response is not helpful because Juan cannot help that he is feeling sad. 8 Say: “men don’t cry and get sad, we used to have so much fun together.” This response is not good because it might embarrass Juan and may make him feel even more sad. Below are some things that Isabel may do or say. Please select all responses that you think might work. 9 Go over and touch Juan on the arm or shoulder. “I know that you feel bad, I do too. What we’re going through is really hard.” This is a good response because people who are feeling sad need extra love, support and understanding. 9 Sit with Juan and suggest that they do a pleasant activity together. This is a good response because it may distract Juan and make him feel better. 8 Sigh and walk away, thinking thinking that there is nothing that she can do. This is not helpful because Isabel is further isolating Juan. 1. Check your understanding Responding to a person with dementia who is feeling depressed. iS u p p o rt In te rv e n ti o n M an u al MODULE 5 208 iS u p p o rt In te rv e n ti o n M an u al AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 4 9 Think “Grandmother cannot help the way that she behaves.” This is a good response because it recognizes that Emma’s reaction might be due to changes in her brain. 8 Say “Grandmother! Sit down, you’re making it impossible for me to watch my show.” This response is not good because a direct order like this may make Emma feel even more anxious. 9 Give his grandmother a smile and reassure her that she is safe. This is a good response because people who are feeling anxious need extra love and support. Below are some things that Benjamin may do or say. Please select all the correct responses. 9 Ask his grandmother to help him with something. This might help because it might distract Emma and change her reaction. 8 Turn up the volume to drown out the muttering and turn away from her. This is not a good response. It will only increase his grandmother’s anxiety. 9 Look for his headphones and encourage his grandmother to go back to her sewing so that she is busy. This is a good response. Benjamin can still watch TV with headphones so it is not too loud for Emma, and Emma might be able to engage in her sewing again. 2. Check your understanding Responding to a person with dementia who is feeling anxious. iS u p p o rt In te rv e n ti o n M an u al MODULE 5 209 iS u p p o rt In te rv e n ti o n M an u al AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 4 8 Sofia walks over to George and says “I’m sick and tired of this laziness, get up and let’s go”. This response is not good because a direct order may make George more withdrawn. It doesn’t show any understanding of his dementia. 9 Sofia goes over to George and strokes his hair. She says that she loves him and that she would like to do something together. George turns to her and smiles weakly. This is a good response because it recognizes that the problem is related to his dementia. She is not taking it personally and is expressing extra love and support. 9 Sofia says: “you never do anything I want anymore, it is impossible to keep on living with you. I don’t know what I’m going to do.” This is not a good response because it shows that she is giving up on George. He may become even more withdrawn from her. How do you think Sofia should react? Please check all the responses that you think are appropriate. 9 Sofia says: “let’s go for a walk together, I know how much you would enjoy getting out of the house for a little while.” This is a good response because it is reassuring and may comfort George. 8 Sofia closes the door and doesn’t try to engage with George anymore. This is not the right response because it may worsen George's loss of interest. 9 Sofia thinks back to what George used to really like doing and thinks how she could help, for example by reading the newspaper to him, cooking his favourite dish or visiting a shop to let him straighten the shelves with the shopkeeper’s permission. This is a good response because it shows Sofia cares about George and wants to help him engage in an activity that he would enjoy. 3. Check your understanding Responding to a person with dementia who loses interest in daily activities. iS u p p o rt In te rv e n ti o n M an u al MODULE 5 210 Why is this lesson important? People with dementia may have difficulty sleeping which can impact the carer’s sleep as well. How will this lesson help me? This lesson will provide examples and practice to promote good sleep. What will I learn? 1. How to deal with sleeping problems in a person with dementia? 2. How to deal with a person with dementia who wakes up in the middle of the night? Lesson 5. Difficulty sleeping 1. How to deal with sleeping problems in a person with dementia? Difficulty sleeping can be a problem for people with dementia and their families. People with dementia can have difficulty falling asleep, may wake up in the middle of the night, or wake up too early in the morning. Carers may have their sleep disrupted as a result, which can make it harder to provide care. In this lesson, you will practice how to promote good sleep for the person living with dementia. Le ss on 5 . D iffi cu lty s le ep in g iS u p p o rt In te rv e n ti o n M an u al MODULE 5 211 What is the main sleeping problems of the person that you care for? Please select all that apply. „ Difficulty falling asleep „ Waking up in the middle of the night „ Combination of the above „ Other (please specify): „ No problems at this point 1. Activity Le ss on 5 . D iffi cu lty s le ep in g iS u p p o rt In te rv e n ti o n M an u al MODULE 5 212 Can you break down the cycle of behaviour change in this example into its three parts? What comes before the behaviour? What is the stressful behaviour? What does this mean for Grace? 1. Check your understanding Understanding sleeping difficulties. Difficulty falling asleep Rosie is an older woman with dementia. She lives with her family. She sleeps near her granddaughter, Grace. Usually, the family has dinner around 6pm. The family is used to doing some activities together afterwards. Rosie does not always like these activities so the family often wants her to go to bed as early as 8pm. Granddaughter Grace notices that Rosie has trouble falling asleep. Rosie continues to open and shut her dresser drawers noisily during the evening. When Grace goes to bed, the noise Rosie is making keeps Grace awake. Le ss on 5 . D iffi cu lty s le ep in g iS u p p o rt In te rv e n ti o n M an u al MODULE 5 213 Here are some examples of what Grace could do. Please select all that you think may be appropriate to help Rosie fall asleep: „ Give her a pill to sleep. „ Try and ensure that Rosie does not drink coffee or too much fluid a few hours before going to bed. „ Make lunch the bigger meal of the day. „ Limit daytime naps to 15 to 30 minutes. „ Play soothing music before bedtime to help Rosie sleep. „ Create a bedtime routine, like lowering the lights, washing face and teeth, and changing into pajamas. „ Keep in mind that some people may require less sleep. Generally, 6 to 8 hours sleep from 20:00 means night waking between 2:00 to 4:00 in the morning. 2. Check your understanding Responding to sleeping difficulties. So far, we have covered some basic steps to help the person with dementia fall asleep. What if the problems are a bit more complex? Le ss on 5 . D iffi cu lty s le ep in g iS u p p o rt In te rv e n ti o n M an u al MODULE 5 214 What can Geeta do to keep Vani from wandering at 3:00 in the morning? Please select all responses that you feel are appropriate. „ Try to understand what will help Vani sleep. Some people prefer to keep the room dark with no television or as little noise as possible while others prefer a night light, soft music or a television playing. „ Give Vani a favourite object to relax (e.g. blanket or stuffed animal). „ Schedule an appointment with the doctor to find out if there is a medical reason for her trouble sleeping (e.g. urinary tract infection, pain, medication causing hallucinations). „ Develop an activity schedule to keep Vani awake and busy during the day. „ Encourage physical exercise during the day (e.g. walking, stretching). „ Tell Vani that you won’t take care of her anymore if you are continuously woken up at night. „ Ask if she has to go to the bathroom or is hungry or thirsty. If she says “yes”, then just assist her to meet these needs. „ Physically take hold of her and put her back in bed. „ Ask for help from a family member, friend or a paid professional. 3. Check your understanding Dealing with waking in the middle of the night (1). 2. How to deal with a person with dementia who wakes up in the middle of the night? Let’s look at another example It is 3:00 in the morning, Vani wakes up and starts walking around the house. Her daughter-in-law, Geeta, is sleeping. Vani paces throughout the house and then goes to Geeta and wakes her up. Vani asks: “Where are we? I want to go home”. Geeta is upset, because she has a long day at work tomorrow. Geeta says: “mother, you need to go back to bed, it is 3:00 in the morning.” Vani says: “I am not sleepy.” Geeta yells: “I can’t take this anymore.” Le ss on 5 . D iffi cu lty s le ep in g iS u p p o rt In te rv e n ti o n M an u al MODULE 5 215 Which of the responses below would you choose if the person you care for experiences sleeping problems? Please select all responses that you feel are appropriate. „ Remind yourself to stay calm and focus on getting the person living with dementia to sleep. This way, you will use your energy to solve the sleeping problem, rather than reacting emotionally. „ Gently remind the person that it is dark outside and it is time to sleep. If needed try to relax the person, for example by playing soothing music. „ Read aloud to the person you care for. Choose something that you know has a calming effect, perhaps a poem or story. Sing a song or chant together. Another option is to pray or meditate for 15 minutes together. „ Comfort the person living with dementia. Give them a stuffed animal and hug or hold them until they fall asleep. 4. Check your understanding Dealing with waking in the middle of the night (2). In the previous exercise, you identified several ways of dealing with waking in the middle of the night. Now let's look at your own situation and some additional responses. Sleeping problems may be related to depression. If the person you care for has difficulty sleeping, you might want to read Lesson 4 Depression, anxiety or apathy. Please also seek advice from a doctor. Tip Le ss on 5 . D iffi cu lty s le ep in g iS u p p o rt In te rv e n ti o n M an u al MODULE 5 216 Let’s look at your own situation In an earlier Activity on page 46, you identified the main sleeping problem of the person you care for. It is important to apply what you have learned to your own situation. The space below is for you, like a diary. What could you do to help tackle the sleeping problems? What could you do to improve your reaction to sleeping problems? 2. Activity Le ss on 5 . D iffi cu lty s le ep in g iS u p p o rt In te rv e n ti o n M an u al MODULE 5 217 z Difficulty sleeping is common in people with dementia. z Sleeping problems can be very stressful to deal with. z If the person you care for is having difficulty sleeping, try to make them more comfortable. z Try to identify circumstances that may increase difficulty sleeping and change or address them. z When one approach doesn’t work, try another one. z Realize that there will be good and bad days. z Remind yourself that difficulty sleeping is part of the disease. z Take a deep breath and think about the best ways to respond that will be the least distressing for you and the person you care for in case of sleeping problems. z Ask for help. It is hard to provide good care on limited sleep. Let’s review what you have learned You finished this lesson, well done! Le ss on 5 . D iffi cu lty s le ep in g iS u p p o rt In te rv e n ti o n M an u al MODULE 5 218 iS u p p o rt In te rv e n ti o n M an u al Can you break down the cycle of behaviour change in this example into its three parts? What comes before the behaviour? Rosie is sent to bed as early as 20:00, so that the family can do activities together that Rosie does not like. Rosie has trouble falling asleep and continues to open and shut her dresser drawers noisily during the evening. This keeps Grace awake. What is the stressful behaviour? What does this mean for Grace? 1. Check your understanding Understanding sleeping difficulties. ANSWERS - DEALING WITH BEHAVIOUR CHANGES Lesson 5. Difficulty sleeping AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 5 iS u p p o rt In te rv e n ti o n M an u al MODULE 5 219 iS u p p o rt In te rv e n ti o n M an u al 9 ✓Go for a walk with Rosie and add more physical activity during the day. This is a good idea! Physical exercise during the day may help sleep at night. 8 Give her a pill to sleep. This is not a good idea. It can make someone with dementia even more confused or agitated and sleeping pills may become addictive. 9 Try to ensure that Rosie does not drink coffee or too much fluid a few hours before going to bed. This is a good response. Coffee, tea, or too much liquid can keep people awake, and cause frequent urination. 9 Make lunch the bigger meal of the day. This is helpful. A light dinner makes it easier to sleep. Rosie has trouble falling asleep 9 Limit daytime naps to 15 to 30 minutes. This might be a good idea. It addresses the need for sleep during the day, but it does not prevent Rosie from falling asleep later on. 9 Play soothing music before bedtime to help Rosie sleep. Good idea. Find relaxing activities before bed such as music, or reading to Rosie. Too much activity before bed can cause a person to be stimulated and stay awake. 9 Create a bedtime routine, like lowering the lights, washing face and teeth, and changing into pajamas. This is a good response because a routine will relax the person living with dementia. 9 Keep in mind that some people may require less sleep. Generally, 6 to 8 hours sleep from 20:00 means night waking between 2:00 to 4:00 in the morning. This is a good response. Select a normal sleeping time as much as possible. 2. Check your understanding Responding to sleeping difficulties. AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 5 iS u p p o rt In te rv e n ti o n M an u al MODULE 5 220 iS u p p o rt In te rv e n ti o n M an u al 9 Try to understand what will help Vani sleep. Some people prefer to keep the room dark with no television or as little noise as possible while others prefer a night light, soft music or a television playing. This answer is a good one. Each person is different and you may need to try several possible solutions before finding one that works. 9 Give Vani a favourite object to relax (e.g. blanket or stuffed animal). This response is a good one. It may help Vani feel relaxed and secure. What can Geeta do to keep Vani from wandering at 3:00 in the morning? 9 Schedule an appointment with the doctor to find out if there is a medical reason for her trouble sleeping (e.g. urinary tract infection, pain, medication causing hallucinations). While it is not necessary to seek medical attention every time that a person living with dementia can’t sleep, seek advice if it worries or upsets you or the person living with dementia. 9 Develop an activity schedule to keep Vani awake and busy during the day. This is a good idea. It may improve sleep at night. 3. Check your understanding Dealing with waking in the middle of the night (1). AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 5 iS u p p o rt In te rv e n ti o n M an u al MODULE 5 221 iS u p p o rt In te rv e n ti o n M an u al 9 Encourage physical exercise during the day (e.g. walking, stretching). This may be helpful to improve sleep at night. 8 Tell Vani that you won’t take care of her anymore if you are continuously woken up at night. This is not a good response. Keep in mind that dementia is a disease and someone with dementia will be dependent on the care that others provide. 9 Ask if Vani has to go to the bathroom or is hungry or thirsty. If she says “yes”, then just assist her to meet these needs. This is helpful. Such a break might help the person go back to sleep. 8 Physically take hold of Vani and put her back in bed. Never do this. Although it may be very difficult to deal with sleeping problems, respect the dignity of someone with dementia. Moreover, they may become agitated or angry. It definitely will not solve the sleeping problems. 9 Ask for help from a family member, friend or a paid professional. This might be helpful. Eventually, the lack of sleep can affect any family’s ability to provide care. Someone else can assist by giving the family member a night or a weekend off. AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 5 3. Check your understanding (continued) Dealing with waking in the middle of the night (1). iS u p p o rt In te rv e n ti o n M an u al MODULE 5 222 iS u p p o rt In te rv e n ti o n M an u al 9 Remind yourself to stay calm and focus on getting the person living with dementia to sleep. This way, you will use your energy to solve the sleeping problem, rather than reacting emotionally. Correct! 9 Gently remind the person that it is dark outside and it is time to sleep. If needed try to relax the person, for example by playing soothing music. Great idea! Which of the responses below would you choose if the person you care for experiences sleeping problems? 9 Read aloud to the person you care for. Choose something that you know has a calming effect, perhaps a poem or story. Sing a song or chant together. Another option is to pray or meditate for 15 minutes together. Good response! 9 Comfort the person living with dementia. Give them a stuffed animal and hug or hold them until they fall asleep. Great idea! 4. Check your understanding Dealing with waking in the middle of the night (2). AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 5 iS u p p o rt In te rv e n ti o n M an u al MODULE 5 223 Why is this lesson important? Unreal thoughts and seeing things that aren’t there (delusions and hallucinations) can be very upsetting to the person living with dementia and the carer. How will this lesson help me? This lesson will help you identify ways to stop or reduce delusions and hallucinations and how you might change the way that you respond to them. What will I learn? 1. Why do people with dementia have unreal thoughts and see or hear things that aren’t there? 2. How to stop or reduce delusions and hallucinations? Lesson 6. Delusions and hallucinations 1. Why do people with dementia have unreal thoughts and see or hear things that aren’t there? People with dementia may not understand the world around them because of changes in their brain. These misunderstandings are called delusions (unreal thoughts) and hallucinations (seeing or hearing things that are not there). A delusion is a fixed false belief. For example, the person may hold the false belief of being under threat or harm from the carer. To the person living with dementia the error in thinking is very real, causes fear and may result in distressing self- protective behaviours. If the person is experiencing a hallucination, they might see or hear things that are not there, for example, people talking in the room. People with dementia with these ideas need a lot of understanding and support from the person taking care of them. Le ss on 6 . D elu sio ns an d ha llu cin at io ns iS u p p o rt In te rv e n ti o n M an u al MODULE 5 224 Has the person you care for ever had any unreal thoughts or seen or heard things that were not there? You can describe them in the space below, like in a diary. 1. Activity Unreal thoughts or seeing/hearing things that are not there are common problems for some people with dementia. In this lesson, you will learn how to deal with them. Remember Le ss on 6 . D elu sio ns an d ha llu cin at io ns iS u p p o rt In te rv e n ti o n M an u al MODULE 5 225 What would you recommend Martin do? Please check all correct answers. „ Soothe her in a calm voice. „ Lead her away from the woman in the park. „ Directly tell the truth, harshly, to set the record straight. „ Argue with Betty that the young woman is not her sister. „ Say that the young woman in the park is someone who looks like her, but it is not her. „ Involve the woman in the park in any way. „ Try to ‘convince’ Betty of the truth. Say “Yes you are right, it is Susan”. „ Say “When we get home, you can look at pictures of Susan and remember her”. 1. Check your understanding Mistaking a person for someone else. 2. How to stop or reduce delusions and hallucinations? Let’s look at the following example Martin’s wife Betty is living with dementia. One day, Martin and Betty are out for a walk. They see a woman in the distance. Betty starts calling loudly “Susan, Susan, I’m over here”. Then she starts running towards a woman unknown to Martin; a young lady who is probably about 20 years old. Betty mistakenly believes that the young woman in the park is her sister who died in a car accident over 30 years ago. The young woman ignores her. Betty becomes very upset. Le ss on 6 . D elu sio ns an d ha llu cin at io ns iS u p p o rt In te rv e n ti o n M an u al MODULE 5 226 „ Soothe her father, by saying in a calm voice “You are safe, I am with you”. „ Check if there is anything in the environment that could be causing Larry's hallucination, such as shadows in the room from the sunlight. Make changes as necessary. „ Lead him away from the room. „ Say that it is simply not true, that there are no other people in the room. What would you recommend Mercedes do? Please check all correct answers. 2. Check your understanding Seeing people that are not there. Now let’s look at another example Mercedes’ father Larry is living with dementia. One day, Larry is a bit restless. Suddenly, he starts to look very frightened while staring at a corner in the room. He calls out to his daughter and says, “Do you see them talking?” He screams, “What are you doing there?” Mercedes is so overwhelmed that she feels like running away. She thinks to herself “Dad’s illness is much worse than I thought it was.” Check with the doctor regarding medication side effects that the person living with dementia is using. These may contribute to the problem. Tip Le ss on 6 . D elu sio ns an d ha llu cin at io ns iS u p p o rt In te rv e n ti o n M an u al MODULE 5 227 Let’s look at your own situation It is important to apply what you have learned to your own situation. Which one would you try first? Unreal or unusual thoughts do not happen all the time. What would you do if the person you care for experiences them? Try to describe different appropriate responses in the space below. 2. Activity Sometimes people with dementia have pleasant hallucinations, like seeing beautiful colours or children who are not there. If these visions are not causing the person distress then try to enjoy them together. Remember Le ss on 6 . D elu sio ns an d ha llu cin at io ns iS u p p o rt In te rv e n ti o n M an u al MODULE 5 228 z Unreal thoughts or seeing/hearing things that are not there (delusions and hallucinations) are common in people with dementia. z They can be very upsetting to the person living with dementia and the carer. z Often, people with these visions and unreal thoughts need a lot of reassurance. z It is important to identify ways to reduce them, not by arguing with the person you care for, but by comforting and distracting them. z Check the environment to see if there is a cause for the delusion or hallucination. z If one approach doesn’t work, try another one. z Remind yourself that unreal thoughts or visions are part of the disease. z Take a deep breath and think about the best ways to respond that will be the least distressing to you and the person you care for if they are experiencing unreal thoughts or visions. You finished this lesson, well done! Let’s review what you have learned Le ss on 6 . D elu sio ns an d ha llu cin at io ns iS u p p o rt In te rv e n ti o n M an u al MODULE 5 229 iS u p p o rt In te rv e n ti o n M an u al ANSWERS - DEALING WITH BEHAVIOUR CHANGES Lesson 6. Delusions and hallucinations 9 ✓Soothe her in a calm voice. This is a good response because people with delusions and hallucinations may feel frightened and insecure. 9 ✓Lead her away from the woman in the park. This is a good response because it will distract her from the young woman in the park. ✓ 8 Directly tell the truth, harshly, to set the record straight. This is not a good response as it may make Betty even more upset. ✓✓ 8 Argue with Betty that the young woman is not her sister. This is not a good response as it may make Betty even more upset. 9 Say that the young woman in the park is someone who looks like her, but it is not her. This is a good response because it maintains a positive social environment. 8 Involve the woman in the park in any way. This is not helpful because it may make the situation more complicated. 8 Try to ‘convince’ Betty of the truth. This is not a good response as Betty may not understand. 8 Say “Yes you are right, it is Susan”. This is not correct because it is not the truth. 9 Say “When we get home, you can look at pictures of Susan and remember her”. This is a good response because Martin addresses the importance of her sister, without arguing that the young woman Betty saw in the park was not her sister. 1. Check your understanding Mistaking a person for someone else. AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 6 iS u p p o rt In te rv e n ti o n M an u al MODULE 5 230 iS u p p o rt In te rv e n ti o n M an u al ANSWERS - DEALING WITH BEHAVIOUR CHANGES Lesson 6. Delusions and hallucinations 2. Check your understanding Seeing people that are not there. AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 6 9 Soothe him, by saying in a calm voice “You are safe, I am with you”. This is a good response because people with hallucinations are often feeling frightened and insecure. 9 Check if there is anything in the environment that could be causing his hallucinations, such as shadows in the room from the sunlight. Make changes as necessary. This is a good response because although a person’s brain may be misinterpreting the environment there could still be a reasonable cause for confusion. 9 Lead him away from the room. This is a good response because changing the environment may distract her father and end the hallucination. 8 Say that it is simply not true, that there are no other people in the room. This is not a good response because arguing about what one sees or hears will not help a person experiencing delusions or hallucinations to calm down. iS u p p o rt In te rv e n ti o n M an u al MODULE 5 231 Why is this lesson important? If a person living with dementia repeats things over and over it can be stressful for themselves and the carer. We will refer to this as a ‘repetitive behaviour’. How will this lesson help me? This lesson will help you understand why repetitive behaviours occur, and how to respond to, and reduce, them. What will I learn? 1. What is repetitive behaviour? 2. How to comfort a person living with dementia in case of repetitive behaviours? Lesson 7. Repetitive behaviour 1. What is repetitive behaviour? A person living with dementia may forget what they have said, heard or did from one moment to the next, leading to repeated questions and actions. Usually doing things over and over is not harmful to the person living with dementia, if the carer knows how to deal with it. If not, the person living with dementia can become anxious, aggressive or depressed and the carer can become stressed. As a result, carers may respond inappropriately, for example by screaming, which often makes the person with dementia feel guilty. Le ss on 7 . R ep et iti ve b eh av io ur iS u p p o rt In te rv e n ti o n M an u al MODULE 5 232 Let’s look at your own situation Does the person you care for ever do or say things over and over again? What behaviour(s) do they repeat? You can describe them in the space below, like a diary. 1. Activity Le ss on 7 . R ep et iti ve b eh av io ur iS u p p o rt In te rv e n ti o n M an u al MODULE 5 233 What would you recommend to John? Please select all correct responses. „ Say “What’s wrong with you? Can’t you remember? We just had lunch!” „ Stay calm and reassure his father that his wife will be home soon. „ Engage his father in an activity. „ Write down the answers to his questions, for example where his wife is and when she is expected to return. „ Walk away. „ Accept the repetitive questions. If it isn’t harmful, let it be. Find ways to adapt. „ Offer his father a snack or a drink. 1. Check your understanding Repeating questions. Let’s look at this example John is taking care of his father Joe, because his mother, the main carer, is out of the house for a few hours. All seems fine, although John notices that his father is rather tense because John’s mother is not there. John and Joe eat lunch together. Sometime after finishing lunch, Joe asks “When is lunch?” and, “What are we having for lunch?” John does not think much of it at first. Then, again, a few minutes later, Joe asks “When is lunch?”, “What are we having for lunch?”, and “Where is your mother?” Joe repeats these questions again and again. John is confused about why Joe is doing this and gets more and more worried about his father. John continues to answer the questions, but gets a bit upset and raises his voice. John responds, loudly and is annoyed, “I have already answered these questions, why do you keep asking?” 2. How to comfort a person living with dementia in case of repetitive behaviours? Le ss on 7 . R ep et iti ve b eh av io ur iS u p p o rt In te rv e n ti o n M an u al MODULE 5 234 Let’s look at your own situation It is important to apply what you have learned to your own situation. The spaces below are for you, like a diary. Now look back at the examples that you identified in the previous activity. Choose the repetitive behaviour that is the most stressful to the person that you care for, or to yourself, and list it below. What could you do to help reduce this behaviour? How could you change your response to this behaviour? 2. Activity Le ss on 7 . R ep et iti ve b eh av io ur iS u p p o rt In te rv e n ti o n M an u al MODULE 5 235 z Doing or saying things over and over again (repetitive behaviour) is common in people with dementia. z Repetition can be very stressful to deal with. z In case of repetition, try to focus on comforting the person you care for. z Try to identify what comes before the repetitive behaviour and what may increase it. Then try to change it. Try to identify how you respond and change that also. z Realize there may be worse, but also better moments. z Remind yourself that repetitive behaviours are part of the disease. z Take a deep breath and think about the best ways to respond that will be the least distressing to you and the person living with dementia if they do or say things over and over again. You finished this lesson, well done! Let’s review what you have learned Le ss on 7 . R ep et iti ve b eh av io ur iS u p p o rt In te rv e n ti o n M an u al MODULE 5 236 iS u p p o rt In te rv e n ti o n M an u al 9 Say “What’s wrong with you? Can’t you remember? We just had lunch!” This is not a good response because John is blaming his father for something that he can’t help. 9 Stay calm and reassure his father that his wife will be home soon. This is a good response as repetition might worsen due to Joe’s feelings of insecurity. He seems to feel insecure because his wife went out. By reassuring Joe that his wife will come back soon, the repetition may lessen or stop. 9 Engage his father in an activity. This can be a good response because it may distract his father and offer something else to see, hear or do. 9 Write down the answers to his questions, for example where his wife is and when she is expected to return. This might work well, may reassure Joe and stop him from asking again. 8 Walk away. This response is not so good because it will only upset his father more. 9 Accept the repetitive questions. If it isn’t harmful, let it be. Find ways to adapt. This can be a good response. Perhaps if it is just repetitive questioning, by remaining calm the behaviour may decrease. 9 Offer his father a snack or a drink. This might be a good response. Perhaps Joe is still hungry or thirsty. It may help to calm him and meet his need. 1. Check your understanding Repeating questions. ANSWERS - DEALING WITH BEHAVIOUR CHANGES Lesson 7. Repetitive behaviours AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 7 iS u p p o rt In te rv e n ti o n M an u al MODULE 5 237 Why is this lesson important? Concerns about walking and getting lost can cause distress. Carers like you may worry whether the person will get lost. How will this lesson help me? This lesson will help you understand the reasons for walking and what to do to reduce the chances of the person living with dementia getting lost. What will I learn? 1. Why is walking a concern? 2. Why a person with dementia might want to walk around? 3. How can I manage habits and reduce the chances that the person I care for gets lost? Lesson 8. Walking and getting lost 1. Why is walking a concern? People with dementia may have the habit of walking around the home or leaving the house and wanting to walk around the neighbourhood, this is also called wandering. This is very common. However, they may get lost. So, safety is a primary concern when people with dementia are out alone. It is important to prevent wandering. This lesson will teach you why people with dementia may have a desire to walk. You will also learn about the steps that you can take to help make this safer. It is important to find ways to help prevent people with dementia from getting lost or ending up in an unsafe situation. Le ss on 8 . W al ki ng an d ge tti ng lo st iS u p p o rt In te rv e n ti o n M an u al MODULE 5 238 Does the person you care for sometimes walk around or walk away? You can describe what happens in the space below, like in a diary. 1. Activity 2. Why a person with dementia might want to walk around? A person with dementia who wanders or walks away may be: z Wanting to exercise. z Continuing a lifelong habit of walking regularly. z Relieving boredom due to not being sufficiently stimulated. z Using up energy from sitting all day. z Relieving pain and discomfort from joint pain or stiffness. z Responding to stress or anxiety. z Feeling lost or uncertain about their surroundings. z Going out and forgetting where they were going. z Searching for someone or something in the past or present. z Seeking fulfilment and purpose such as the desire to go to work. z Getting confused about the time. Le ss on 8 . W al ki ng an d ge tti ng lo st iS u p p o rt In te rv e n ti o n M an u al MODULE 5 239 There are certain things that may help manage a person’s walking habits and prevent them from getting lost. For example, try to: 3. How can I manage habits and reduce the chances that the person I care for gets lost? z Make sure that the person carries some form of identification. z Make sure that your home is secure, that the person is safe in your home and cannot leave without you knowing. For example, camouflaging doors and door knobs may help, or using a bell or curtain that makes noise when someone uses the door. z Keep an up-to-date photograph in case the person you care for gets lost and you must ask for help from others. z After the person you care for is found, speak calmly, with acceptance and love, try to avoid blaming and showing anger. z Keep to the routines and activities of the person you care for. Identify the most likely times of the day that their walking may occur and plan activities such as a walk in the park together at that time. z Reassure the person you care for if they feel lost, abandoned or disoriented, or want to leave to “go home" or “go to work". For example, try saying: “we are staying here tonight. We are safe and I'll be with you. We can go home in the morning after a good night's rest." Try to refrain from correcting the person living with dementia. z Ensure that all basic needs are met. Has the person gone to the bathroom? Are they thirsty or hungry? z Avoid busy places that are confusing and can cause disorientation, such as shopping malls, markets, grocery stores or other crowded places. Le ss on 8 . W al ki ng an d ge tti ng lo st iS u p p o rt In te rv e n ti o n M an u al MODULE 5 240 Let’s look at an example Amit has dementia and is supported by his wife, Samia. Samia is cooking dinner when she hears Amit heading for the door. She knows that he likes to go for afternoon walks, but now is not a good time since she is cooking. What would you recommend to Samia? Please select all correct responses. „ Yell to Amit from the kitchen, “please stop! I can’t come with you now.” „ Turn the cooker off and follow Amit. „ Forbid Amit to leave and pull him back into the house. „ Go to where Amit is standing by the door and calmly say: “let’s eat dinner first and we’ll go for a walk later.” „ Lock the door so that Amit cannot leave. „ Let Amit leave and call a neighbour to keep an eye out for him. „ Ask another family member to go for a walk with him. „ Ask Amit to help with a task in the kitchen. „ Schedule more afternoon walks before dinner. 1. Check your understanding Dealing with walking away. Le ss on 8 . W al ki ng an d ge tti ng lo st iS u p p o rt In te rv e n ti o n M an u al MODULE 5 241 Let’s look at your own situation It is important to apply what you have learned to your own situation. The spaces below are for you, like a diary. What are the possible reasons why the person you care for may have the desire to walk? Please select all answers that apply. Based on the reasons that you selected, how might you react or respond the next time the person you care for wants to go outside or walk? 2.1. What could you do to help the person enjoy walking in a safe way? Take a moment to summarize the points that you have learned in this lesson, which will help you going forward: „ Wanting to exercise. „ Continuing a lifelong habit of walking regularly. „ Relieving boredom due to not being sufficiently stimulated. „ Using up energy from sitting all day. „ Relieving pain and discomfort from joint pain or stiffness. „ Responding to stress or anxiety. „ Feeling lost or uncertain about their surroundings. „ Going out and forgetting where they were going. „ Searching for someone or something in the past or present. „ Seeking fulfilment and purpose such as the desire to go to work. „ Getting confused about the time „ Other (please state): 2. Activity Le ss on 8 . W al ki ng an d ge tti ng lo st iS u p p o rt In te rv e n ti o n M an u al MODULE 5 242 z Walking around or walking away is common. z Walking can be healthy exercise, reduce boredom, and be a common habit or routine of the person. z Walking away or walking alone might be a safety risk. z Concerns about walking and getting lost can be very upsetting to the person living with dementia and the carer. z It is important to identify possible reasons for walking around or walking away. z How you respond to the desire to walk should be based on the possible reasons for it. z If one approach doesn’t work, try another one. z Realize that there may be worse, but also better moments. z Take a deep breath and think about the best ways to respond that will be the least distressing to you and the person living with dementia. If you want to know more about how to plan an enjoyable day, please refer to the Lesson 5. An enjoyable day in Module 4. You finished this lesson, well done! Let’s review what you have learned Le ss on 8 . W al ki ng an d ge tti ng lo st iS u p p o rt In te rv e n ti o n M an u al MODULE 5 243 iS u p p o rt In te rv e n ti o n M an u al Relaxation exercise - Neck movements AN SW ER S - D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 8 ANSWERS - DEALING WITH BEHAVIOUR CHANGES Lesson 8. Walking and getting lost 8 Yell to Amit from the kitchen, “please stop! I can’t come with you now.” This is not a good response because yelling at Amit from the kitchen may confuse and agitate him. It may also not stop him from going out on his own. 9 Turn the cooker off and follow Amit. This is a good response if there are no other alternatives. 8 Forbid Amit to leave and pull him back into the house. This is not a good response because Amit may get agitated and resist being pulled which could result in Amit or Samia being harmed. 9 Go to where Amit is standing by the door and calmly say: “Let’s eat dinner first and we’ll go for a walk later.” This is a good response because Samia stays calm, does not yell, and honors Amit’s wishes by telling him that they will go together after dinner. 9 Lock the door so that Amit cannot leave. This is a good response if no other options exist and Samia is in the house with Amit. For fire safety reasons, a person living with dementia who requires supervision should never be locked inside a house without another person there. 9 Let Amit leave and call a neighbour to keep an eye out for him. This is a good option if Samia has prearranged with the neighbours to keep an eye out for him. If Amit is in the very early stages of dementia, he may be okay while going out on his own to places that are familiar to him. 9 Ask another family member to go for a walk with him. This is a good option. Samia can finish cooking dinner and Amit can enjoy a nice walk before dinner. 1. Check your understanding Dealing with walking away. iS u p p o rt In te rv e n ti o n M an u al MODULE 5 244 iS u p p o rt In te rv e n ti o n M an u al Relaxation exercise - Neck movements AN SW ER S - D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 8 9 Ask Amit to help with a task in the kitchen. This is a good response because it involves distracting Amit from going for a walk alone and gives him purpose and keeps him occupied. 9 Schedule more afternoon walks before dinner. This is a good response because planning ahead will prevent Samia from being interrupted when cooking dinner to assist Amit. It may also help Amit to release some energy and come home to relax before dinner. 1. Check your understanding (continued) Dealing with walking away. iS u p p o rt In te rv e n ti o n M an u al MODULE 5 245 Why is this lesson important? Changes in judgement can be upsetting to the person living with dementia and the carer. How will this lesson help me? This lesson will help you understand the reasons causing changes in judgement and teach you skills to manage this. What will I learn? 1. What are changes in judgement? 2. How can you manage changes in judgement? 3. What to do if the changes in judgement are more serious? Lesson 9. Changes in judgement 1. What are changes in judgement? Changes in judgement may include saying the wrong thing at the wrong time, acting inappropriately in a situation, or not understanding one’s own limitations. Usually these actions are not harmful, but they can be stressful or embarrassing for the person living with dementia or the carer. People with dementia are often looking for guidance or reassurance. Le ss on 9 . C ha ng es in ju dg em en t iS u p p o rt In te rv e n ti o n M an u al MODULE 5 246 Did you ever notice that the person you care for sometimes has a change in their judgement? If so, what did you observe? Please describe this in the space below. How did it affect you as the carer? 1. Activity Tip Changes in judgement will increase as dementia progresses. In this lesson you can practice several ways of responding to changes in judgement and find out what may help. Le ss on 9 . C ha ng es in ju dg em en t iS u p p o rt In te rv e n ti o n M an u al MODULE 5 247 2. How can you manage changes in judgement? Let’s go through an example Ivan is in town visiting his aunt Isabel who has dementia. They are on their way to a restaurant for dinner. In order to get there, Ivan decides to hail a taxi. All of a sudden, the car pulls up alongside Isabel and startles her. Isabel, who is normally a very gentle woman, starts scolding the taxi driver. What would you recommend to Ivan to help him deal with this situation? Please select all correct responses. „ Put his hand on Isabel’s mouth in order to stop her scolding the driver. „ Walk Isabel back to her apartment and leave because what happened is embarrassing. „ Stay calm and reassure Isabel everything is alright. „ Accept the behaviour. If the taxi driver doesn’t seem to notice, let it be. Find ways to adapt. „ Ivan could carry a business card that explains, ‘My companion has dementia, please be patient with us.’ and give this card to the taxi driver. 1. Check your understanding Managing changes in judgement. Le ss on 9 . C ha ng es in ju dg em en t iS u p p o rt In te rv e n ti o n M an u al MODULE 5 248 3. What to do if changes in judgement are more serious? The last example was a brief and one-time experience for Ivan. However, what happens if the changes in judgement experienced by a person living with dementia are more serious? Here are three examples to help you learn how to react. Mishandling finances Sophie has dementia and lives alone. Her cousin Julia has come to visit her. Despite the fact that Sophie has always been organised, Julia arrives to find that there is a large pile of unopened mail on the kitchen table. Julia wonders if Sophie has had some trouble paying her bills. She asks Sophie about her finances. Sophie cannot remember whether she has paid her bills or not, does not know when they are due, and cannot recall how much money she has in her bank account. Julia becomes quite concerned. What would you recommend to Julia? Please select all correct responses. „ Stay calm and call Sophie’s daughter. „ Go to the bank and ask for control of Sophie’s finances. „ Leave because she feels uneasy. „ Ask Sophie if she would like some help in opening her mail. „ ✓Try to find out whether Sophie has someone who handles her finances, like a family member or a professional. 2. Check your understanding Managing more serious changes in judgement (1). Le ss on 9 . C ha ng es in ju dg em en t iS u p p o rt In te rv e n ti o n M an u al MODULE 5 249 Insisting on driving Hugo is living with dementia. His neighbour, Pablo, notices that his car is parked very strangely one day, obstructing some of the other cars on the street. Pablo walks out of his apartment, sees Hugo and attempts to start a conversation. Instead of stopping, Hugo jumps in his car, speeds off and takes an illegal left turn out of the compound. Hugo returns quickly and nothing bad seems to have happened. What would you recommend to Pablo? Please select all correct responses. „ Immediately seize Hugo’s car keys when he returns. This will prevent it from happening again. „ Stay calm and ask whether Hugo has any other places to go that day, and if so, offer him a ride. „ Ignore the situation because it is embarrassing. „ Ask Hugo if he would like some help figuring out transportation. „ Tell Hugo that he is concerned about his driving and suggest visiting his doctor to discuss it. „ Report the incident to Pablo’s carer, friend or family member. 3. Check your understanding Managing more serious changes in judgement (2). It is better if the decision not to drive comes from the person living with dementia. Giving up driving is typically a difficult time in the person’s life where they are losing independence. Alternatives such as offering regular rides, teaching the person how to use public transportation or arranging taxis will help the person stay active and involved in their community activities. It is important that the person does not become isolated or lonely once they give up driving. More effort will be needed to keep them connected to the world outside their home. Tip Le ss on 9 . C ha ng es in ju dg em en t iS u p p o rt In te rv e n ti o n M an u al MODULE 5 250 Inappropriate sexual advances Mateo is in his late 70s, has dementia and lives with his family. Two days a week, an in-home aide, Camila, who is 22 years old, comes to help him take a bath and administer his medication. This arrangement has been working well for several months. One day, while preparing for his bath, Mateo makes some sexual remarks and tries to pull Camila close to him. Camila is shocked and surprised. She runs out of the room and tells the family that she can no longer work there. If the inappropriate advances continue, the family might want to consider hiring a male in-home aide instead of a female one which could prevent this behaviour. They also might seek help from a professional. Tip What would you recommend to Mateo’s family? Please select all correct responses. „ Stay calm and tell Mateo that this behaviour is unacceptable. Explain who Camila is. „ Change the bathing situation. Perhaps Camila can set up a sponge bath and Mateo can do more himself. „ Change the environment. Put a towel or robe over Mateo’s shoulders while he is being bathed to keep him covered for privacy. „ Shout at Mateo, shaming him for his conduct. „ Ignore the situation. 4. Check your understanding Managing more serious changes in judgement (3). Le ss on 9 . C ha ng es in ju dg em en t iS u p p o rt In te rv e n ti o n M an u al MODULE 5 251 Let’s look at your own situation It is important to apply what you have learned to your own situation. Earlier, we asked whether the person you care for sometimes shows changes in judgement. After going through these examples, think again about your own situation. The spaces below are for you, like a diary. Does the person living with dementia sometimes show changes in judgement? In what way could you respond? Take a moment to summarize the points that you have learned, which will help you deal with changes in judgment in the future. 2. Activity Changes in judgement may hamper decision-making. If you want to know more, review Lesson 3. Supported decision-making in Module 2. Remember Le ss on 9 . C ha ng es in ju dg em en t iS u p p o rt In te rv e n ti o n M an u al MODULE 5 252 z Changes in judgement usually increase as dementia progresses. z Changes in judgement can be very upsetting for the person living with dementia and the carer. z It is important to reduce or prevent changes in judgement, whenever possible. z Realize that there may be good and bad days. z Remind yourself that this is a part of the disease. z Take a deep breath and think about the best ways to respond that will be the least distressing to you and the person you care for. z Plan for increasing levels of changes in judgement. You finished this lesson, well done! Let’s review what you have learned Le ss on 9 . C ha ng es in ju dg em en t iS u p p o rt In te rv e n ti o n M an u al MODULE 5 253 iS u p p o rt In te rv e n ti o n M an u al 8 ✓Put his hand on Isabel’s mouth in order to stop her scolding the driver. This response is not good because it may even worsen the situation and cause Isabel further agitation. ✓ 8 Walk Isabel back to her apartment and leave because what happened is embarrassing. This response is not good because Isabel may feel bad and isolated. 9 ✓Stay calm and reassure Isabel everything is alright. This is a good response because it shows Ivan cares about Isabel. It may stop her from scolding the taxi driver and make her feel more relaxed. What would you recommend to Ivan? 9 ✓Accept the behaviour. If the taxi driver doesn’t seem to notice, let it be. Find ways to adapt. This can be an appropriate response if the behaviour is not harming anyone. 9 Ivan could carry a business card that explains, ‘My companion has dementia, please be patient with us.’ and give this card to the taxi driver. This is a good response because it relieves Ivan from explaining the situation to the taxi driver which may embarrass Isabel. 1. Check your understanding Managing changes in judgement. ANSWERS - DEALING WITH BEHAVIOUR CHANGES Lesson 9. Changes in judgement AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 9 iS u p p o rt In te rv e n ti o n M an u al MODULE 5 254 iS u p p o rt In te rv e n ti o n M an u al 9 Stay calm and call Sophie’s daughter. This response is good because Julia shares her worries with Sophie’s closest relative, her daughter, who might know more and can arrange help if needed. 9 Go to the bank and ask for control of Sophie’s finances. This is not appropriate because it is Sophie’s decision to appoint a person that she is comfortable with to help manage her finances. 9 Leave because she feels uneasy. This response is not appropriate. If Sophie has problems dealing with her finances, letting the situation continue could make things worse. What would you recommend to Julia? 9 Ask Sophie if she would like some help with opening her mail. This response is good because Sophie may be able to pay her bills if given the right prompts, such as opening the bills in front of her and cueing her to pay one at a time. 9 Try to find out whether Sophie has someone who handles her finances, like a family member or a professional. This is a good response because Sophie may be at the point in her illness where she is no longer able to handle the finances on her own. If it seems that she is not getting any help with handling her finances, Julia may want to call her daughter to share her worries. 2. Check your understanding Managing more serious changes in judgement (1). ANSWERS - DEALING WITH BEHAVIOUR CHANGES Lesson 9. Changes in judgement AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 9 iS u p p o rt In te rv e n ti o n M an u al MODULE 5 255 iS u p p o rt In te rv e n ti o n M an u al 8 Immediately seize Hugo’s car keys when he returns because this will prevent it from happening again. This is not a good response because Pablo cannot decide whether his neighbour should drive anymore, and Hugo may become angry. 9 Stay calm and ask whether Hugo has any other places to go that day, and if so, offer him a ride. This is a good response because it prevents Hugo from driving unsafely and provides safe transportation, so Hugo can run his errands. 8 Ignore the situation because it is embarrassing. This response is not good because Hugo’s driving may cause harm to himself and others. What would you recommend to Pablo? 9 Ask Hugo if he would like some help figuring out transportation. This response is appropriate because Hugo may be able to safely ride a bus or walk, preventing any unsafe behaviour. 9 Tell Hugo that he is concerned about his driving and suggest visiting his doctor to discuss it. This is a good response as Pablo respects Hugo by being honest and raising a concern. 9 Report the incident to Pablo’s carer, friend or family member. This is a possible response. Pablo may not know if Hugo has dementia and could be concerned about the risk of harm to Hugo and others. 3. Check your understanding Managing more serious changes in judgement (2). AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 9 iS u p p o rt In te rv e n ti o n M an u al MODULE 5 256 iS u p p o rt In te rv e n ti o n M an u al 9 Stay calm and tell Mateo that this behaviour is unacceptable. Explain who Camila is. This option is a good one. Mateo’s family does not overreact because they remember it is the disease taking effect. They redefine the appropriate boundaries for Camila’s safety. 9 Change the bathing situation. Perhaps Camila can set up a sponge bath and Mateo can do more himself. This is a good option. Letting Mateo do more himself will distract him. In this way, both Camila and Mateo’s dignity are maintained. What would you recommend to Mateo’s family? 9 Change the environment. Put a towel or robe over Mateo’s shoulders while he is being bathed to keep him covered for privacy. This is a good response. Perhaps because Mateo is naked, he misunderstands the situation. 8 Shout at Mateo, shaming him for his conduct. This response is not good because as part of his dementia Mateo may not know that these advances are inappropriate. Therefore, try not to overreact. 8 Ignore the situation. This response is not good because Mateo may continue to make inappropriate sexual advances and cause distress to Camila. 4. Check your understanding Managing more serious changes in judgement (3). AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 9 iS u p p o rt In te rv e n ti o n M an u al MODULE 5 257 Why is this lesson important? Certain changes in behaviour can be particularly stressful for the person living with dementia and the carer. How will this lesson help me? This lesson will summarize ways to prevent, reduce or manage behaviour changes. What will I learn? 1. The most important things to keep in mind when dealing with challenging behaviours. 2. Practical tips on not blaming yourself, sharing your feelings with others and making time for yourself. Lesson 10. Putting it all together 1. The most important things to keep in mind when dealing with behaviour changes z Behaviour changes can be stressful for the person you care for and yourself. This is quite common. z Try to make the person you care for feel more comfortable. z Look for ways to prevent or reduce behaviour changes that are stressful, for example by using memory aids. z Try to distract the person you care for, don’t argue. z When one approach does not work, try another one. z Realize that there may be good and bad days. z Consult a medical doctor to identify any causes related to medication or illness. z Identify whether the environment or your approach could be causing the particular symptom. z Remind yourself that behaviour changes are part of the disease but other possible causes should be identified before accepting the disease as a cause. Le ss on 1 0. P ut tin g it al l t og et he r iS u p p o rt In te rv e n ti o n M an u al MODULE 5 258 2. Practical tips on not blaming yourself, sharing your feelings with others and making time for yourself Here are some tips from related lessons. If you did not take these lessons yet, you can complete them after finishing this one. z Don’t blame yourself or the person living with dementia for the problems that you encounter. If you want to work on ways to manage your feelings, take a look at the last page of Lesson 3. Thinking differently in Module 3. z Share your feelings about your experiences as a carer with others. If you keep them to yourself it may be more difficult for you to look after your family member or friend. If you want to learn more about involving others, take a look at Lesson 4. Involving others in Module 2. z It is essential that you make time for yourself. This will allow you to do the things that you value in life, such as spending time with others or enjoying your favourite hobbies. If you want to learn more about doing pleasant activities, take a look at Lesson 2. Making time for pleasant activities in Module 3. You finished this lesson, well done! Le ss on 1 0. P ut tin g it al l t og et he r

Worldwide, carers of people with dementia should have access to information and support in order to effectively respond to, and manage, the physical, mental and social demands associated with caring for someone living with dementia. This iSupport manual has been developed to provide accessible, evidence-based training and information, tailored to carers’ needs. It aims to improve knowledge and caregiving skills, such as carers’ ability to cope with dementia symptoms and care for themselves. iSupport is also available online and can be accessed at www.isupportfordementia.org/en. For further information, please contact: Department of Mental Health and Substance Abuse World Health Organization Avenue Appia 20 CH-1211 Geneva 27 Switzerland Email: whodementia@who.int Wesbite: www.who.int/mental_health/neurology/dementia/en ISBN: 9789241515863

iSupport For Dementia Training and support manual for carers of people with dementia iS u p p o rt In te rv e n ti o n M an u al iSupport For Dementia Training and support manual for carers of people with dementia © World Health Organization 2019 Some rights reserved. This work is available under the Creative Commons Attribution-NonCommercial-ShareAlike 3.0 IGO licence (CC BY-NC-SA 3.0 IGO; https://creativecommons.org/licenses/by-nc-sa/3.0/ igo). Under the terms of this licence, you may copy, redistribute and adapt the work for non-commercial purposes, provided the work is appropriately cited, as indicated below. In any use of this work, there should be no suggestion that WHO endorses any specific organization, products or services. The use of the WHO logo is not permitted. If you adapt the work, then you must license your work under the same or equivalent Creative Commons licence. If you create a translation of this work, you should add the following disclaimer along with the suggested citation: “This translation was not created by the World Health Organization (WHO). WHO is not responsible for the content or accuracy of this translation. The original English edition shall be the binding and authentic edition”. Any mediation relating to disputes arising under the licence shall be conducted in accordance with the mediation rules of the World Intellectual Property Organization. Suggested citation. iSupport for dementia. Training and support manual for carers of people with dementia. Geneva: World Health Organization; 2019. Licence: CC BY-NC-SA 3.0 IGO. Cataloguing-in-Publication (CIP) data. CIP data are available at http://apps.who.int/iris. Sales, rights and licensing. To purchase WHO publications, see http://apps.who.int/bookorders. To submit requests for commercial use and queries on rights and licensing, see http://www.who.int/about/ licensing. Third-party materials. If you wish to reuse material from this work that is attributed to a third party, such as tables, figures or images, it is your responsibility to determine whether permission is needed for that reuse and to obtain permission from the copyright holder. The risk of claims resulting from infringement of any third-party-owned component in the work rests solely with the user. General disclaimers. The designations employed and the presentation of the material in this publication do not imply the expression of any opinion whatsoever on the part of WHO concerning the legal status of any country, territory, city or area or of its authorities, or concerning the delimitation of its frontiers or boundaries. Dotted and dashed lines on maps represent approximate border lines for which there may not yet be full agreement. The mention of specific companies or of certain manufacturers’ products does not imply that they are endorsed or recommended by WHO in preference to others of a similar nature that are not mentioned. Errors and omissions excepted, the names of proprietary products are distinguished by initial capital letters. All reasonable precautions have been taken by WHO to verify the information contained in this publication. However, the published material is being distributed without warranty of any kind, either expressed or implied. The responsibility for the interpretation and use of the material lies with the reader. In no event shall WHO be liable for damages arising from its use. iSupport for dementia. Training and support manual for carers of people with dementia ISBN 978-92-4-151586-3 Layout by Van Cleef Emnacen CONTENTS Module 1. Introduction to dementia 1 Module 2. Being a carer 11 Lesson 1. The journey together 12 Lesson 2. Improving communication 24 Lesson 3. Supported decision-making 42 Lesson 4. Involving others 57 Module 3. Caring for me 69 Lesson 1. Reducing stress in everyday life 70 Lesson 2. Making time for pleasant activities 82 Lesson 3. Thinking differently 92 Module 4. Providing everyday care 107 Lesson 1. Eating and drinking - more pleasant mealtimes 108 Lesson 2. Eating, drinking and preventing health problems 121 Lesson 3. Toileting and continence care 128 Lesson 4. Personal care 140 Lesson 5. An enjoyable day 152 Module 5. Dealing with behaviour changes 165 Lesson 1. Introduction to behaviour changes 166 Lesson 2. Memory loss 177 Lesson 3. Aggression 187 Lesson 4. Depression, anxiety and apathy 201 Lesson 5. Difficulty sleeping 210 Lesson 6. Delusions and hallucinations 223 Lesson 7. Repetitive behaviour 231 Lesson 8. Walking and getting lost 237 Lesson 9. Changes in judgement 245 Lesson 10. Putting it all together 257 ACKNOWLEDGEMENTS i PREFACE iii USER GUIDE iv iS u p p o rt In te rv e n ti o n M an u al i Technical Reviewers and Advisors Emiliano Albanese, WHO Collaborating Center for Training and Research in Mental Health, University of Geneva, Switzerland; Nicole Batsch, Alzheimer’s Disease International, London, UK; Upasana Baruah, National Institute of Mental Health and Neurosciences, Bangalore, India; Kiki Edwards, Rossetti Care, Ibadan, Nigeria; Kieren Egan, WHO Collaborating Center for Training and Research in Mental Health, University of Geneva, Switzerland; Mariella Guerra, Instituto de la Memoria, Lima, Peru; Jayna Holroyd-Leduc, University of Calgary, Canada; Timothy Kwok, Jockey Club Centre for Positive Ageing, The Chinese University of Hong Kong, Hong Kong; Marleen Prins, WHO Collaborating Centre for Dissemination of Good Practices in Mental Health, Trimbos-Institute, Utrecht, Netherlands; Santosh Loganathan, National Institute of Mental Health and Neurosciences, Bangalore, India; Prafulla Shivakumar, National Institute of Mental Health and Neurosciences, Bangalore, India; Iris van Asch, WHO Collaborating Centre for Dissemination of Good Practices in Mental Health, Trimbos-Institute, Utrecht, Netherlands; Mathew Varghese, National Institute of Mental Health and Neurosciences, Bangalore, Vision, conceptualization and project management Tarun Dua, Anne Margriet Pot (project manager), Shekhar Saxena, Diana Zandi. Project coordination and editing The team that coordinated the development of the manual, including writing and editing, was comprised of Neerja Chowdhary, Stéfanie Fréel, Anne Margriet Pot and Katrin Seeher. Contribution Valuable help and advice was received from many organizations, experts, people with dementia, and carers who have contributed to the development of iSupport, including but not limited to those mentioned below. Key Contributions Dolores Gallagher-Thompson, Stanford University, Stanford, USA; Kala Mehta, Stanford University, Stanford, USA; Bernadette Willemse, WHO Collaborating Centre for Dissemination of Good Practices in Mental Health, Trimbos-Institute, Utrecht, Netherlands; Lilly Xiao, Flinders University, Adelaide, Australia. ACKNOWLEDGEMENTS AC KN OW LE DG EM EN TS iS u p p o rt In te rv e n ti o n M an u al ii India; Huali Wang, Dementia Care & Research Center, Peking University Institute of Mental Health, Beijing, China; Marc Wortmann, Marc Wortmann Consulting. WHO Staff, Consultants and Interns Alison Brunier, Kenneth Carswell, Emma Cradock, Sophie D’Souza, Melissa Harper Shehadeh, Marije Kaat, Dévora Kestel, Annet Kleiboer, Harleen Rai, Dag Rekve, Hiral Shah, Mark van Ommeren, Shuo Wang. Administrative Support Caroline Herment, Jacqueline Lashley, Adeline Loo, Ophel Riano. Production Team Development (web version): Iris Rosier, Kirsten van der Werff, Katherina Martin Abello, WHO Collaborating Centre for Dissemination of Good Practices in Mental Health, Trimbos-Institute, Utrecht, Netherlands, in collaboration with; Deepak Bhikharie, Edi Recica, Kees Schouten, Aan Zee, Noordwijk aan zee, Netherlands. Illustrations: Janet van der Werff, Drachten, Netherlands. Graphic design and layout (iSupport manual): Van Cleef Emnacen, Philippines. Editing: Harriet Payne, Alzheimer’s Disease International, London, U.K. Financial Support WHO would like to thank the following countries/agencies for supporting the development and production of iSupport: Alzheimer’s Association, U.S.A.; and, the Ministry of Health, Welfare and Sport, Netherlands. Neither of them are individually responsible in any way for the content, functioning of, or views displayed on iSupport. AC KN OW LE DG EM EN TS iS u p p o rt In te rv e n ti o n M an u al iii Being a carer for someone with dementia may affect one’s physical and mental health, well-being, and social relationships. Long- term care systems must account for the significant emotional, financial and social impact of caregiving on families and relatives, while addressing the needs of people with dementia. This includes providing carers with access to education, skills training, respite and social support through affordable, evidence-based resources. To address this need, the World Health Organization (WHO) has developed iSupport, an online skills training and support programme for carers of people with dementia. This iSupport manual allows carers who do not have access to the internet, or who prefer a manual, to benefit from the tool. The iSupport online programme and manual are currently being field-tested. It is our hope that the programme will be adapted by, and implemented in, many countries around the world. Dévora Kestel Director, Department of Mental Health and Substance Abuse Dementia is a major cause of impairement that affects a person’s memory, thinking and behaviour, and interferes with one’s ability to perform daily activities. It affects people worldwide, in particular older people. Globally, families provide the majority of care to people with dementia. The impact of dementia is significant to the individual who lives with dementia, their families, societies and countries, both in financial terms and human costs. The Global action plan on the public health response to dementia 2017-2025 represents an important step forward in achieving physical, mental and social wellbeing for people with dementia, their carers and families. It is an opportunity for individuals, communities and countries to realize the vision of a world in which dementia is prevented and people with dementia and their carers receive the care and support they need to fulfil their potential with dignity, respect, autonomy and equality. P R E FA C E PR EF AC E PREFACE iS u p p o rt In te rv e n ti o n M an u al iv What is included in the iSupport manual? The manual is organized into five modules (see Figure 1 page vi): (1) introduction to dementia; (2) being a carer; (3) caring for me; (4) providing everyday care; and (5) dealing with behaviour changes that might happen in people living with dementia. Module 1 provides an introduction to what dementia is, including what happens to people with dementia and what to do if you think that your family member or friend has dementia. Module 2 focuses on improving communication, shared decision-making and involving others in caring for the person living with dementia. Module 3 aims to reduce carer stress by making time for pleasant activities and thinking differently. Module 4 focuses on eating and drinking, including creating more pleasant mealtimes and preventing health problems, using the toilet and continence care, and personal care. Worldwide, carers of people with dementia should have access to information and support tailored to their needs in order to effectively respond to, and manage, the physical, mental and social demands associated with caring for someone living with dementia. iSupport has been developed to provide accessible, evidence-based training and information, tailored to carers’ needs. It aims to improve knowledge and caregiving skills, such as carers’ ability to cope with dementia symptoms and care for themselves. iSupport seeks to enable people with dementia to live in the community while preventing or reducing carer stress. The lessons included in this manual were carefully designed to help carers tackle the important challenges that they may face when caring for someone living with dementia. US ER G UI DE USER GUIDE iS u p p o rt In te rv e n ti o n M an u al v Finally, Module 5 provides an introduction to common changes in behaviour for people with dementia that might be distressing and upsetting for both the person with dementia and you as the carer. These symptoms include memory loss, aggression, depression and anxiety, difficulty sleeping, delusions and hallucinations, repetitive behaviour, walking and getting lost as well as poor or decreased judgement. Who is the target audience? This iSupport manual is primarily for carers of people with dementia, including family members and relatives, friends, and other carers. However, iSupport may also be of interest to others, for example: z nongovernmental organizations (NGOs) providing skills training, support and/or information to carers of people with dementia; z health and social care workers providing care and information to carers of people with dementia; and z private sector representatives involved in the development of health technologies for dementia, dementia health care service delivery or health care insurance. US ER G UI DE iSUPPORT Caring for me MODULE 3 Being a carer MODULE 2 Providing everyday care MODULE 4 Dealing with behaviour changes MODULE 5 What is dementia and how does it affect someone The journey together Reducing stress in everday life Eating and drinking: more pleasant mealtimes Introduction Delusions and hallucinations Repetitive behaviours Eating, drinking and preventing health problems Memory loss Walking and getting lost Toileting and continence care Aggression Changes in judgement Personal care Depression, anxiety and apathy Putting it all together An enjoyable day Difficulty sleeping Making time for pleasant activities Thinking differently Improving communication Supported decision-making Involving others Introduction to dementia MODULE 1 vi Figure 1 iS u p p o rt In te rv e n ti o n M an u al vii How to use this iSupport manual? iSupport has been developed as a self-help tool for carers of people living with dementia. Each module is divided into individual lessons (see Figure 1). All lessons are structured in the same way. At the beginning, there is an overview of why the lesson is important, how the lesson will help you as a carer and what you will learn. Each lesson then consists of a mixture of brief reading to provide new information, descriptive examples, multiple choice questions and activities to practice what you have learned. You may choose to work through the entire manual from beginning to end or select the lessons that are most relevant to your everyday life. You can also come back to individual lessons. How was iSupport developed? iSupport is grounded in WHO’s Mental Health Gap Action Programme (mhGAP) guidelines for carers of people with dementia. mhGAP aims to scale health and social care services for mental, neurological and substance use disorders for all countries, with a focus on low- and middle-income countries (LMICs). iSupport was developed based on evidence related to the feasibility and effectiveness of carer training and support interventions, both in person and online. Finally, the programme was developed in collaboration with international experts in the field of caregiving for people with dementia and internet-based interventions, and reflects the voices of carers of people with dementia. For more information on the development of iSupport see Pot et al (2019)1. US ER G UI DE 1 Pot AM, Gallagher-Thompson D, Xiao LD, Willemse BM, Rosier I, Mehta KM, Zandi D, Dua T. iSupport: a WHO global online intervention for informal carers of people with dementia. World Psychiatry. 2019. iS u p p o rt In te rv e n ti o n M an u al viii These exercises will help you feel calm and reduce stress. There is an entire lesson on relaxation activities included in Module 3. Relaxation activity Tip/Reminder/Keep in Mind Tips help you reflect on your learning or give practical reminders of how to apply what you have learned to your everyday life. Activity Here you will be asked to reflect upon how caregiving for a person with dementia is affecting your life or the life of the person with dementia. Example. How are you feeling right now? Please select all that apply. † Sad † Happy † Angry † Confused Check your understanding Here you will be asked a question about what you have learned. Answers are at the end of every lesson. Example: What color is the sky? † Green † Blue † Red † Orange US ER G UI DE Below is a guide to the individual exercises and activities that you will encounter throughout the manual. These exercises and activities allow for you to check your understanding and reflect on your learning in practical ways. iS u p p o rt In te rv e n ti o n M an u al ix Other uses of iSupport Although iSupport is primarily a self-help tool, we encourage a broader use. For example, iSupport might be supplemented by guidance from volunteers or health care workers to create more impact. The iSupport manual can also serve as a tool to structure educational or support group meetings for carers of people with dementia, or it may simply be used as a resource tool for participants of self-help groups. Finally, health care workers might find iSupport useful in assisting and supporting carers. Please note that both the iSupport online training programme and this manual are subject to ongoing rigorous field-testing and evaluation. More research is needed to evaluate the effectiveness of local adaptions and implementations. How to adapt iSupport? The iSupport manual represents a template that can be adapted to national or local contexts and needs. An adaptation and implementation guide is available to assist countries/communities in this process. WHO owns the copyright on iSupport. If you are interested in adapting and implementing iSupport, please contact WHO at whodementia@who.int to request a copyright license. This applies to both the iSupport manual and the online programme, accessible at www.iSupportForDementia.org. US ER G UI DE M od ul e 1 . I nt ro du ct io n to d em en tia M od ul e 1 . I nt ro du ct io n to d em en tia INTRODUCTION TO DEMENTIA 1 MODULE iS u p p o rt In te rv e n ti o n M an u al 2 Introduction to dementia Why is this lesson important? Dementia is a disease that can be overwhelming for the person with dementia, but also for you as a carer. There are many myths about dementia and learning more will help explain some common misunderstandings. How will this lesson help me? This lesson helps you to understand the basics of what dementia is and how it affects someone. This information is essential when you are a carer. What will I learn? 1. What is dementia? 2. What causes dementia? 3. What happens to people with dementia as the disease progresses? 4. What to do if you think that the person you care for has dementia? 5. How to reach out for help? 6. What is the focus of this manual? MODULE 1 In tro du ct io n to d em en tia iS u p p o rt In te rv e n ti o n M an u al 3 1. What is dementia? Dementia occurs as a result of a disease process that increasingly damages the brain over time. Dementia affects all groups of society and is not linked to social class, gender, ethnic group, or geographic location. Dementia is not a part of normal ageing. Although dementia is more common among older people, younger people can also be affected. 2. What causes dementia? Dementia is caused by a number of diseases which destroy nerve cells and damage the brain, as outlined below. Alzheimer’s disease Alzheimer’s disease is the most common cause of dementia. It destroys brain cells and nerves, disrupting the transmitters that carry messages in the brain, particularly those responsible for storing memories. Vascular dementia Vascular dementia occurs where blood vessels are damaged, the supply of oxygen to the brain fails and as a result, brain cells die. The symptoms of vascular dementia can occur either suddenly, following a stroke, or over time, through a series of small strokes. Vascular dementia accounts for 20%-30% of all cases of dementia. Dementia with Lewy bodies Dementia with Lewy bodies is similar to Alzheimer’s disease in that it is caused by deteriorating and dying nerve cells in the brain. It takes its name from abnormal deposits of protein - Lewy bodies - in the nerve cells of the brain. It may account for around 10% of all cases of dementia. Approximately, half the people with Lewy body disease also develop signs and symptoms of Parkinson’s disease. MODULE 1 In tro du ct io n to d em en tia iS u p p o rt In te rv e n ti o n M an u al 4 Fronto-temporal dementia In fronto-temporal dementia - including Pick’s disease - damage is usually concentrated in the front part of the brain. In the beginning, personality and behaviour are more affected than memory. Rarer causes of dementia There are many other rarer causes of dementia, such as alcohol-related dementia and dementia due to HIV/AIDS. 3. What happens to people with dementia as the disease progresses? Every person is unique and dementia affects people differently. No two people will develop the same difficulties in exactly the same way. It is not just the brain damage that determines how dementia affects someone, but also other factors including an individual’s personality, life course, general health and functioning, and living environment. MODULE 1 People with dementia often forget things or have trouble with their memory. Select the correct answer. „ TRUE „ FALSE 1. Check your understanding What happens to people with dementia? In tro du ct io n to d em en tia iS u p p o rt In te rv e n ti o n M an u al 5 Dementia symptoms can range from minor memory loss to severe difficulties in memory and thinking that make it impossible to manage daily activities without help. It can be helpful to view dementia as a series of stages to understand the illness. However, it is important to realize that this only provides a rough guide to the progress of dementia. Not all people with dementia will have all symptoms and some of the symptoms may only appear at one stage of the disease. In the early stage of the disease, people with dementia may have memory problems, become disoriented with respect to time, lost in familiar places and show difficulties making decisions. As dementia progresses to the middle stage, people with dementia may become very forgetful and in need of help with daily activities such as shopping, dressing, and washing. Dementia has stages In the late stage, people with dementia may not recognize relatives or friends anymore may display changes in behaviour that can be upsetting and distressing to the person with dementia and those around them. MODULE 1 In tro du ct io n to d em en tia iS u p p o rt In te rv e n ti o n M an u al 6 Here are some common things that may happen to people with dementia. Do you think that your family member/friend/the person that you care for experiences any of the following? Please select all that apply. 1. Activity Does the person you care for… Have trouble remembering things that happened minutes before? Find it difficult to perform daily activities? Struggle to identify time or place? Communicate differently than they did before? Misplace things? Withdraw socially? Show changes in feelings or personality? „ Yes „ No „ Yes „ No „ Yes „ No „ Yes „ No „ Yes „ No „ Yes „ No „ Yes „ No zz Forgetting recent events zz Repeating questions zz Money management zz Shopping zz Preparing dinner zz Forgetting the date and time of appointments zz Difficulty expressing oneself zz Difficulty finding the right words zz Not finding common objects, such as keys zz Suspecting things are stolen zz Showing decline in social activity zz Lacking urge to do something zz Having a lot of ups and downs zz Becoming more anxious than before Examples MODULE 1 In tro du ct io n to d em en tia iS u p p o rt In te rv e n ti o n M an u al 7 4. What to do if you think that the person you care for has dementia? If you think that a family member or friend may have dementia, a good first step is to make sure that they see a medical doctor. The doctor will examine their body and brain functioning. One important point to rule out is whether the person’s memory problems are caused by other treatable conditions such as depression, urinary tract infection, medication side effects, lack of vitamins or a brain tumor. It is important to identify whether the person’s memory problems are really part of dementia or are part of something else. Only a medical doctor can do this, not this manual. What is the first step if you think that a family member or friend has dementia? Please put a check mark () in front of the answers that you think are correct and a cross () in front of those that are wrong. „ Call a friend or relative. „ Use iSupport alone for help. „ Call a medical doctor’s office and make an appointment. „ The person has been to a medical doctor already and has been diagnosed with dementia. First steps MODULE 1 2. Check your understanding What to do if you think that the person you care for has dementia? In tro du ct io n to d em en tia iS u p p o rt In te rv e n ti o n M an u al 8 5. How to reach out for help? It is important to realize that you, alone, are not going to be able to provide all the care that the person living with dementia needs, especially not as things get more complex over time. So, we encourage you to reach out to family members, friends, and professional organizations or services for help. In many countries there are several resources that are very helpful. Some are free while others are not. Please contact your local Alzheimer’s Association for information, support and care that is available in your area and could benefit the person you care for as well as yourself. 6. What is the focus of this manual? The focus is on you, a carer of someone with dementia. Dementia can be overwhelming. For this reason, iSupport provides you with support to cope with caregiving on a day- to-day basis. It is really important that you not only take care of the person living with dementia but also take care of yourself. iSupport will show you how. It will also show you some common scenarios that might happen with people with dementia so that you are aware and can practice how to respond to such situations. Keep in Mind z Dementia affects a person’s brain. z Dementia is common, especially in older people. z Dementia is a disease, not a part of ageing. z As a first step it is important to see a medical doctor, if possible. z It is important for you to take care of yourself, not only the person you care for. z iSupport can support you as a carer. MODULE 1 In tro du ct io n to d em en tia iS u p p o rt In te rv e n ti o n M an u al 9 MODULE 1 In tro du ct io n to d em en tia You finished this lesson, well done! iS u p p o rt In te rv e n ti o n M an u al 10 People with dementia often forget things or have trouble with their memory. 9 True: This is the correct answer. 8 False: This is the incorrect answer. The right answer is that people with dementia often forget things or have trouble with their memory. What is the first step if you think that the person you care for has dementia? 8 ✗Call a friend or relative While friends and family can offer support, this cannot replace a medical exam given by a certified medical doctor. 8 Use iSupport alone for help While this manual provides information and support, it cannot replace a medical exam given by a certified medical doctor. 9 Call a medical doctor’s office and make an appointment This is the best first step if you have not done so already. 9 The person has been to a medical doctor already and has been diagnosed with dementia You have already completed the first important step. MODULE 1 1. Check your understanding What happens to people with dementia? 2. Check your understanding What to do if you think that the person you care for has dementia? ANSWERS - INTRODUCTION TO DEMENTIA AN SW ER S - IN TR OD UC TI ON TO D EM EN TI A M od ul e 2 . B ein g a c ar eg ive r BEING A CARER Lesson 1. The journey together Lesson 2. Improving communication Lesson 3. Supported decision-making Lesson 4. Involving others 2 MODULE iS u p p o rt In te rv e n ti o n M an u al 12 1. How may your roles change over time? You may feel as if your role is changing. In the early stages of dementia, you may still be able to enjoy many different activities together. As dementia progresses, the person will have more difficulty with everyday tasks. This will require a carer to do more to help with everyday life, such as giving medications and taking the person with dementia to appointments. In the middle and later stages of dementia, a carer might need to do even more for the person with dementia. This may include personal care, such as bathing, going to the toilet and dressing. Some tasks may be challenging for carers and cause stress. Why is this lesson important? Dealing with dementia is a journey you will take together, because it changes the daily life of both the person living with dementia and the carer. How will this lesson help me? This lesson teaches you skills for your journey together: to stay connected, involve others, take care of yourself, and plan for the future. What will I learn? 1. How may your roles change over time? 2. How to stay connected with the person you care for? 3. How to plan pleasant activities and relaxation? 4. How to involve others? 5. How to plan well for the future? Lesson 1. The journey together MODULE 2 Le ss on 1 . T he jo ur ne y t og et he r iS u p p o rt In te rv e n ti o n M an u al 13 Olivia has dementia and lives with her husband Jacob. During the past few months, Olivia’s memory loss seems to be more frequent. The last few times Olivia went shopping, she could not remember what to buy. She came home with the wrong things, which was frustrating. Let's look at an example How should Jacob approach Olivia about what happened? Check all the responses you feel are appropriate. „ Leave Olivia alone and see what happens. „ Ask Olivia to ‘work harder’ to remember things. „ Do not let Olivia shop anymore. „ Ask Olivia how she feels about her memory loss. „ Do not blame Olivia, but make a shopping list together with her each time prior to shopping. 1. Check your understanding Frustration about memory loss. MODULE 2 Le ss on 1 . T he jo ur ne y t og et he r iS u p p o rt In te rv e n ti o n M an u al 14 2. How to stay connected with the person with dementia? Here are some small tips to help you communicate better with someone living with dementia: z use simple sentences; z try to stay in control of your feelings; z create time for yourself and for each other. For more tips on how to improve communication with the person living with dementia, including in the later stages of the disease, read Lesson 2. Improving communication in this module. Tip MODULE 2 Le ss on 1 . T he jo ur ne y t og et he r It is important to keep talking together. The sooner you start talking about dementia and its effects on you and the person you care for, the better. Dementia will make doing this more difficult as time goes by. Talk about the changes happening now and what might happen in the future. Stay connected with each other and discuss the changes that may occur over time. It is important to keep talking together. iS u p p o rt In te rv e n ti o n M an u al 15 Providing care may become increasingly time consuming as the disease progresses. Sometimes carers do not take enough time for themselves. It is really important to try and take care of yourself as best as you can, as some carers may break down from the stress. Part of the journey together should include planning pleasant activities and relaxation for yourself. For more tips on how to relax, read Lesson 1. Reducing stress in everyday life in Module 3. For more tips on how to stay in control of your feelings read Lesson 3. Thinking differently in Module 3. For more tips on how to plan pleasant activities for yourself, read Lesson 2. Making time for pleasant activities in Module 3. 3. How to plan pleasant activities and relaxation? MODULE 2 Le ss on 1 . T he jo ur ne y t og et he r Taking care of yourself is important. iS u p p o rt In te rv e n ti o n M an u al 16 Caregiving can sometimes challenge friendships and relationships. It is common for people providing care to feel that no one understands what they are going through. Talking about your thoughts and feelings with others might help make you feel better. 4. How to involve others? Caring for someone with dementia does not have to be a lonely experience. Let friends and family members know when you could use a break. Caring for a loved one with dementia is sometimes too big a job for one person. Molly’s mother-in-law, Jess, has dementia. Molly has a big deadline at work and needs to leave at 7:30 the next morning. The paid in-home helper is not able to arrive until 9:00 in the morning. This leaves Jess alone for over an hour. Molly wonders whether it would be okay to leave Jess alone and feels stressed because she is not sure what to do. How could Molly deal with the situation? Check all of the responses that you feel are appropriate. „ Leave Jess alone and see what happens. „ Ask a neighbour to come visit Jess until the paid in- home helper arrives. „ Ask Jess to ‘take care of herself’. „ Ask her husband to go into work late so he can be with Jess until the paid in-home helper arrives. „ Ask the paid in-home helper to come in early. 2. Check your understanding Feeling stressed due to conflicting duties. MODULE 2 Le ss on 1 . T he jo ur ne y t og et he r iS u p p o rt In te rv e n ti o n M an u al 17 5. How to plan well for the future? Preparing for the future is a topic that will need to be discussed. You will need to make decisions with the person you care for about preferences for who might provide care, planning for the costs of future care needs, and preferences in case of more advanced care needs and end of life decisions. Many people providing care, like you, worry about the future. The earlier you plan for the future, the better and easier it will be for you. Planning early will also ensure that the person you care for will be better able to say what their wishes are. Where possible, discuss topics that concern you. Here are some common questions that carers have. You may want to discuss these with the person you care for. Write down the responses to the questions. What are the person’s preferences when they are no longer able to bathe themselves? For example, would they prefer a male or female to help bathe them? How do they feel about having a close family member bathe them or would they prefer a qualified professional who is unrelated? What does the person you care for want to do themselves for as long as possible? MODULE 2 Le ss on 1 . T he jo ur ne y t og et he r 1. Activity iS u p p o rt In te rv e n ti o n M an u al 18 MODULE 2 Le ss on 1 . T he jo ur ne y t og et he r 1. Activity What are their wishes at the end of life? If you find it helpful, please write down the questions that you might want to discuss in the space below. If more assistance is needed at home, what kind of help would the person you care for prefer now and/or in the future? iS u p p o rt In te rv e n ti o n M an u al 19 What are some ways that Jacob and Olivia can maintain their intimacy as Olivia’s dementia progresses? Think about it before reading on. MODULE 2 Le ss on 1 . T he jo ur ne y t og et he r 2. Activity Let’s revisit the scenario with Olivia and Jacob Intimate relationships may change As you progress through the journey together, partners may experience some changes in their intimate relationship. At first, sexual relationships between partners may still be possible. As the disease progresses, sexual relationships and physical intimacy may become more difficult. Olivia is in the early stages of dementia and lives with her husband Jacob. Olivia and Jacob have a healthy, mutually satisfying physical relationship, but Jacob is worried about the day when these relations may stop. iS u p p o rt In te rv e n ti o n M an u al 20 Ways to stay connected z Use touch, hold hands or do a gentle massage to communicate warmth, connection, safety and love. z Use music – it is truly a universal language. Play music that the person you care for likes and that makes them feel good. z Try to maintain your sense of humour. This will help reduce frustration and tension. z Talk with them about what they like and need – it’s an important conversation to have more than once, as things change over time. z It is okay to take a break. z It is okay to ask for help. z It is okay to feel frustrated sometimes. z It is okay to feel lonely sometimes if you feel that the person you care for is no longer able to meaningfully communicate with you. Taking care of yourself One of the most important things to remember as roles change is that you, as someone providing care for a person with dementia, need to care for yourself too. Throughout this manual we will teach you ways to do this. Here are some tips for partners on how to maintain intimacy, even when sexual relations may no longer be possible with the person living with dementia. MODULE 2 Le ss on 1 . T he jo ur ne y t og et he r Tip Reminder iS u p p o rt In te rv e n ti o n M an u al 21 z As your role changes, it is important to stay connected during your journey together. z Make sure that you plan pleasant activities and relaxation so that your role does not become overwhelming. z Ask for help because providing care to someone with dementia can be tiring. z Make sure that you plan well for the future. z There are many different ways to maintain intimacy and stay connected. Let’s review what you have learned For more tips on how to relax, read Lesson 1. Reducing stress in everyday life in Module 3. MODULE 2 Le ss on 1 . T he jo ur ne y t og et he r You finished this lesson, well done! iS u p p o rt In te rv e n ti o n M an u al 22 9 Ask Olivia how she feels about her memory loss This is a good response because Jacob is addressing the issue by discussing its impact on Olivia and staying ‘connected’. Jacob could also share his own worries about he memory loss. 9 Do not blame Olivia, but make a shopping list together with her each time prior to shopping. This is a very good response, because this will help Olivia to continue shopping and maintain her independence as long as possible. How should Jacob approach Olivia about what happened? 8 Leave Olivia alone and see what happens This is not a helpful response, because Olivia and Jacob both feel frustrated. To stay connected it is important to talk about their frustration and worries about the future. 8 Ask Olivia to ‘work harder’ to remember things This is not a good response, because memory loss is part of living with dementia, it is unlikely to change. 8 Do not let Olivia shop anymore. This is not a good response because doing the shopping is important to Olivia. Shopping may give Olivia purpose in life and a feeling of dignity. ANSWERS - BEING A CARER Lesson 1. The journey together MODULE 2 1. Check your understanding Frustration about memory loss. AN SW ER S - B EI NG A C AR ER • Le ss on 1 iS u p p o rt In te rv e n ti o n M an u al 23 How could Molly deal with the situation? 9 Ask a neighbour to come visit Jess until the paid in- home helper arrives. This is helpful because it ensures Jess’ safety. Molly can do her work and also gets a short break from caregiving. 9 Ask her husband to go into work late so that he can be with Jess until the paid in-home helper arrives. This is a good response. It shows that Molly is trying to involve her family members for support and gives her the break that she needs. 9 Ask the paid-in home helper to come in early. This is a good response but it may not be possible because of the short notice. 8 Leave Jess alone and see what happens. This is not a good response, because it potentially puts Jess in danger and Molly will not be able to perform well at work with the added stress of leaving Jess. 8 Ask Jess to ‘take care of herself’. This is not a good response because her dependence on others is part of living with dementia and unlikely to change. MODULE 2 2. Check your understanding Feeling stressed due to conflicting duties. AN SW ER S - B EI NG A C AR ER • Le ss on 1 iS u p p o rt In te rv e n ti o n M an u al 24 Why is this lesson important? Dementia can often make communication difficult. How will this lesson help me? This lesson helps you to talk in a simple and direct way and show your compassion in everyday situations. What will I learn? 1. How to improve communication? 2. How to check the person’s ability to hear and see? 3. How to get attention in a respectful way? 4. How to keep it simple? 5. How to take the person seriously? 6. How to pay attention to reactions? 7. How to give compliments? 8. How to show compassion? 1. How to improve communication? In this lesson you will learn about tools and tips for good communication. Dementia can often make communication difficult. This can have an impact on your relationship with the person you care for. It can even make them or you frustrated, sad or angry. When you communicate with the person you care for, for example by talking to them or giving them a hug, make sure that they understand what you mean by your action and that you understand them too. Lesson 2. Improving communication MODULE 2 Le ss on 2 . I m pr ov in g co m m un ica tio n iS u p p o rt In te rv e n ti o n M an u al 25 For all communication - talking, touching or gestures – the basics, like the ability to see and hear, are important. Unfortunately, dementia may impair someone’s ability to hear and see. Therefore, it is important that you check whether the person's hearing and sight could be improved by making changes in their environment or arranging for any relevant medical check-ups. 2. How to check the person’s ability to hear and see?Show compassion by listening, take the person you care for seriously, treat them with respect and dignity, show interest, or give them a smile or a hug. This is very important for every human being, including people with dementia. In this lesson we help you to show compassion. Some important basic skills for communication will be explained. MODULE 2 Le ss on 2 . I m pr ov in g co m m un ica tio n Imagine for a moment that you are living with dementia. What would you like other people to do? Please select all that apply. „ Listen to how you feel. „ Talk behind your back. „ Give you a smile. „ Say that they do not care. „ Tell you that they love you. „ Treat you like a child. „ Approach you with respect and dignity. 1. Check your understanding Imagine that you are living with dementia. iS u p p o rt In te rv e n ti o n M an u al 26 Exercise to improve sight The ability to see is important for communication. Check the items below to help improve sight. In general, people with dementia need more light to see clearly. Increase light levels and use daylight where possible. It will help the person living with dementia to see well. You may also think of leaving lights on at night so the person can find the bathroom. Dementia can make it hard to see contrasts. For example, if there is a white plate on a white table, people with dementia may have difficulty seeing the plate. A coloured plate or tablecloth may help. Does the person living with dementia lose or misplace their glasses frequently? Encourage them to always put the glasses in the same spot to reduce frustration over having to look for them. Sometimes a neck cord is also helpful in that case. If the person living with dementia wears glasses, check whether they are clean and still comfortable to wear. Are the glasses comfortable around the ears and nose? If the person living with dementia does not have glasses, but cannot see well anymore, consult a doctor. If the person living with dementia wears glasses, check to see if the prescription is still accurate, or consult a doctor. Is there enough light? „ Yes „ No „ Yes „ No „ Yes „ No „ Yes „ No „ Yes „ No Is there enough contrast in colours? Is the person living with dementia wearing their glasses? Are the glasses still okay? Do you need to consult a doctor? Tips 1. Activity MODULE 2 Le ss on 2 . I m pr ov in g co m m un ica tio n iS u p p o rt In te rv e n ti o n M an u al 27 Exercise to help improve hearing The ability to hear is important for communication. Check the items below to help improve hearing. Minimizing background noise will help to improve hearing. Perhaps take the person living with dementia to a quieter location with fewer distractions. Turn off the television or radio when trying to communicate with them. The person living with dementia may forget to wear the hearing aid or require help or assistance with putting it in properly. If the person living with dementia is wearing a hearing aid, check whether it is clean, fits snugly in the ear canal, is still comfortable to wear and the batteries are charged. If the person living with dementia wears a hearing aid, check if the prescription is still accurate, or whether you need to consult a doctor. If the person living with dementia does not have a hearing aid, but cannot hear well anymore, you should also consult a doctor. Is there too much noise? Is the hearing aid still okay? Do you need to consult a doctor? If the person living with dementia has a hearing aid, is he/she wearing it? Tips MODULE 2 Le ss on 2 . I m pr ov in g co m m un ica tio n 2. Activity „ Yes „ No „ Yes „ No „ Yes „ No „ Yes „ No iS u p p o rt In te rv e n ti o n M an u al 28 3. How to get attention in a respectful way? The person living with dementia is a person with feelings, no matter how serious the disease is or how advanced communication problems are. Therefore, an important first step is to make contact with the person you care for by catching their attention. Below are some suggestions regarding how to capture the attention of a person living with dementia. Please put a check mark () in front of the answers that you think are correct and a cross () in front of those that are wrong. „ Raise your voice or shout. „ Speak clearly and slowly, at a volume that is comfortable for the person, face to face and at eye level. „ Tap a hand, arm or front of the shoulder. „ Stop and hold the person to make him or her listen. „ Approach the person from the back and touch their shoulder. „ Call the person living with dementia by a name that they recognize. MODULE 2 Le ss on 2 . I m pr ov in g co m m un ica tio n 2. Check your understanding Get attention in a respectful way. z Gaining attention is a first important step for good communication. z There are different ways to gain the attention of a person living with dementia in a respectful manner. Remember iS u p p o rt In te rv e n ti o n M an u al 29 Jonathan takes care of his father who has dementia. Jonathan notices that his father does not understand him. Can you tell why? Check the items in the list below that you think could impair communication between Jonathan and his father. „ The radio is on. „ Jonathan is making a phone call. „ Jonathan asks multiple questions at the same time. z Ask or tell the person living with dementia one thing at a time. z Use simple language and keep sentences short. Avoid long and complicated sentences, focus on one subject at a time. z When needed, change from open-ended to closed-ended questions that can be answered with YES or NO. z Make sure there are no distracting background noises such as a television or radio. Often the language we use to get a message across is too complicated. Keeping it simple will help the person you care for understand you better. 4. How to keep it simple? MODULE 2 Le ss on 2 . I m pr ov in g co m m un ica tio n Keep in Mind 3. Check your understanding Keep it simple. iS u p p o rt In te rv e n ti o n M an u al 30 At some point, you may not understand what the person you care for means. The language they use may even seem strange or funny. However, it is important that you take them seriously. The person you care for is trying to tell you something, even though their communication skills may be impaired due to the dementia. 5. How to take the person seriously? MODULE 2 Le ss on 2 . I m pr ov in g co m m un ica tio n It is important that you take the person you care for seriously. iS u p p o rt In te rv e n ti o n M an u al 31 John is visiting his father who has dementia. When his father wants to describe his morning to John, he cannot find the right words. John says to his wife in front of his father: “I have no clue what he means!” His wife answers: “Yes, I don’t know either. He is just like a child!” Let's look at an exampleMODULE 2 Le ss on 2 . I m pr ov in g co m m un ica tio n Which of the following statements do you think is correct? Check all the responses that you feel are appropriate. „ John should not talk about his father when he is in same the room. John could have said: “It is difficult to understand what you mean.” In addition, he could have asked some questions that his father could have answered with ‘YES’ or ‘NO’. For example: “Have you gone outside this morning?” „ John and his wife could be more patient. „ John and his wife could ask John’s father if it is okay when they try to guess what he wants to say. „ It is important that John and his wife talk about the difficulty to understand John’s father in front of him. „ His wife is right: a person living with dementia is just like a child. 4. Check your understanding Take the person seriously. z It is important to take the person that you are caring for seriously and treat them with respect and dignity. z Do not talk about them in their presence. z Be patient and give them time to find the right words. z When the person you care for is difficult to understand, it may help to ask closed- ended questions that can be answered with YES or NO to understand what they mean. Remember iS u p p o rt In te rv e n ti o n M an u al 32 Take a look at the cartoons below. Do you understand these feelings? Select the right answer for each cartoon. You can tell a lot from the way someone speaks and looks. For example, if someone is smiling, you can assume that this person is in a good mood. Keeping this in mind will help you communicate with the person you care for. 6. How to pay attention to reactions? Happy Angry Sad Scared Happy Angry Sad Scared Happy Angry Sad Scared Happy Angry Sad Scared z Facial expressions and body language tell us how a person is feeling. Other examples of body language include fidgeting, having arms crossed or pacing. These can give us messages about how the person may be feeling. For example whether the person may be nervous, upset or anxious. z Take notice of the responses and body language of the person you care for. MODULE 2 Le ss on 2 . I m pr ov in g co m m un ica tio n 5. Check your understanding Pay attention to reactions. Keep in Mind iS u p p o rt In te rv e n ti o n M an u al 33 7. How to give compliments? Complimenting the person you care for is important. In general, it is much more effective to say what someone is doing well, than to say what they are doing wrong. A compliment can range from commenting that someone has done something well to saying that they look nice. You can give compliments in different ways and in different situations. Here is a list of statements. These statements include several compliments. However, there are also some statements that are not compliments. Please put a check mark () in front of the statements that are compliments and a cross () in front of those that are not. „ You look beautiful. „ You are good at ... „ What are you doing?! Stop it! „ You are very helpful. Thank you. „ You are making a mess. „ You should be ashamed of forgetting everything. „ I love having you around. „ You are driving me crazy. „ You have a great smile. Statements MODULE 2 z The person you care for will feel good if you say something positive. z Compliments can be given in many different ways. z Saying something negative will make a person feel bad. Keep in Mind 6. Check your understanding Give compliments. Le ss on 2 . I m pr ov in g co m m un ica tio n iS u p p o rt In te rv e n ti o n M an u al 34 Think about all the things that you like about the person you care for. Now try to write down something you would say to give them a compliment. MODULE 2 3. Activity Le ss on 2 . I m pr ov in g co m m un ica tio n iS u p p o rt In te rv e n ti o n M an u al 35 It is important that you show compassion, even if a person living with dementia is repeating the same questions over and over again, or understanding each other becomes increasingly difficult. You need to remember that dementia is a disease that can make communication difficult. For example, a person living with dementia may have forgotten what they just said. You need to use extra effort and be patient with the person you care for. 8. How to show compassion? MODULE 2 Le ss on 2 . I m pr ov in g co m m un ica tio n William often visits his sister, Elena, who lives with dementia. Elena’s husband passed away six months ago. When William is visiting, Elena often asks where her husband is. William finds this difficult. He knows Elena is missing her husband and may have forgotten that he died. William tries to distract her by asking questions about other things, such as: ”How was your day?” Elena persists in asking where her husband is. Today William tries a different approach William says to Elena: “It must be difficult for you that he died”. He gives Elena a hug. William shows Elena some pictures of her husband that he brought from home and talks to her about her husband. William showed that he understands that Elena is missing her husband and tries to support her. Let's look at an example Did William respond well? Please select the correct answer below. „ YES „ NO Did William respond well? Please select the correct answer below. „ YES „ NO 7. Check your understanding How to show compassion (1). 8. Check your understanding How to show compassion (2). iS u p p o rt In te rv e n ti o n M an u al 36 Keep in mind that people with dementia also have the right to grieve the loss of a loved one in a safe and supportive setting. The example of William and his sister, Elena, shows that: z You can show compassion in different ways. z It is important to take a person living with dementia seriously and to pay attention to the questions they have. z Showing compassion helps to improve your relationship with the person you care for. You have practiced the following communication skills: z check ability to hear and see; z get attention in a respectful way; z keep it simple; z take the person seriously; z pay attention to reactions; z give compliments; z show compassion. Let’s review what you have learned MODULE 2 Le ss on 2 . I m pr ov in g co m m un ica tio n You finished this lesson, well done! iS u p p o rt In te rv e n ti o n M an u al 37 MODULE 2 ANSWERS - BEING A CARER Lesson 2. Improving communications What would you like other people to do? 9 Listen to how you feel 8 Talk behind your back 9 Smile at you 8 Say that they do not care 9 Tell you that they love you 8 Treat you like a child 9 Approach you with respect and dignity 1. Check your understanding Imagine that you are living with dementia. AN SW ER S - B EI NG A C AR ER • Le ss on 2 iS u p p o rt In te rv e n ti o n M an u al 38 MODULE 2 8 ✗Stop and hold the person to make them listen. This is not a respectful way to get attention. It may even make the person living with dementia feel distressed or angry. 8 Approach from the back and touch the person’s shoulder. This may startle someone who is not expecting you or perhaps did not hear you coming. 9 Call the person living with dementia by a name that he or she recognizes. This is a good way to attract the attention of a person living with dementia. You might use their first name or a nickname that was used in the past. Below are some suggested ways to get the attention of a person living with dementia. What are the right and wrong answers? ✗ 8 Raise your voice or shout. Raising your voice is not a respectful way to gain attention. It may even make the person living with dementia feel sad, frustrated or angry. 9 Speak clearly, slowly, at a volume that is comfortable for the person, face to face and at eye level. This is an appropriate way to make contact. It shows that you are seeking contact in a respectful manner. 9 Tap a hand, arm or front of the shoulder. This is a good way to attract the attention of a person living with dementia. 2. Check your understanding Get attention in a respectful way. AN SW ER S - B EI NG A C AR ER • Le ss on 2 iS u p p o rt In te rv e n ti o n M an u al 39 Jonathan takes care of his father who has dementia. Jonathan notices that his father does not understand him. Can you tell why? 9 The radio is on. Very good! A radio can be very distracting. It makes it difficult to follow what someone else is saying, especially for people with dementia who can have difficulty concentrating. 9 Jonathan is making a phone call. Very good! Making a phone call does not show interest and will confuse his father. It’s important for people with dementia to try and stay focused on one task. It will be difficult to get back on the same subject after making a phone call. 9 Jonathan asks multiple questions at the same time. Correct! Asking too many questions at the same time makes it difficult for his father to understand. MODULE 2 3. Check your understanding Keep it simple. AN SW ER S - B EI NG A C AR ER • Le ss on 2 Which of the following statements do you think is correct? 9 John should not talk about his father when his father is in same the room. He could have said, “It is difficult to understand what you mean.” In addition, he could have asked some questions that his father could have answered with ‘YES’ or ‘NO’. For example: “have you gone outside this morning?” Correct! John takes his father seriously when trying to understand what he wants to say. Do not talk about the person you care for while they are in the same room. 9 John and his wife could be more patient. Correct! It takes people with dementia longer to find the right words and they need time and patience to be understood. 9 John and his wife could ask John’s father if it is okay when they try to guess what he wants to say. This is a correct answer because some people with dementia appreciate help with finding the right words or fill in sentences. 4. Check your understanding Pay attention to reactions. iS u p p o rt In te rv e n ti o n M an u al 40 MODULE 2 AN SW ER S - B EI NG A C AR ER • Le ss on 2 Take a look at the cartoons below. Do you understand this feeling? Select the right answer below. Happy 9 Angry Sad Scared 9 Happy Angry Sad Scared Happy Angry 9 Sad Scared Happy Angry Sad 9 Scared 5. Check your understanding Pay attention to reactions. 9 You look beautiful. 9 You are good at … 8 What are you doing?! Stop it! 9 You are very helpful. Thank you. 8 You are making a mess. 8 You should be ashamed of forgetting everything. 9 I love having you around. 8 You are driving me crazy. 9 You have a great smile. 6. Check your understanding Give compliments. iS u p p o rt In te rv e n ti o n M an u al 41 Did William respond well in the first example? 8 No Will wants to distract his sister’s attention because he knows she is missing her husband and will be sad to be reminded that he died. Although Will has the best intentions, ignoring her questions is not the right way to respond especially because his sister persists in asking. Did William respond well in the second example? 9 ✓Yes It is important to try different responses to identify the one which will cause the less distress. Initially William tried to distract his sister with no success. Today, by showing his sister pictures of her husband, they had a good conversation about him. MODULE 2 7. Check your understanding How to show compassion (1). 8. Check your understanding How to show compassion (2). AN SW ER S - B EI NG A C AR ER • Le ss on 2 iS u p p o rt In te rv e n ti o n M an u al 42 Why is this lesson important? Making decisions can become more difficult for a person living with dementia over time. How will this lesson help me? By practicing how to support a person living with dementia to make their own decisions for as long as possible or to assist in making decisions in the person’s best interest. What will I learn? 1. Why is support in decision-making needed? 2. How to make decisions in someone’s best interest? 3. How to support someone with dementia to make everyday decisions? 4. How to support someone with dementia to make everyday decisions as the dementia progresses? 5. How to support someone with dementia in making complex decisions? 1. Why is support in decision-making needed? Supporting someone with dementia to make their own decisions is very important. Like everyone else, people living with dementia have the right to participate in all decisions that affect their lives and wellbeing. However, making decisions may become difficult due to the progression of dementia. Sometimes this results in relatives taking over decision- making, instead of supporting people with dementia to make their own decisions. In this lesson, you will learn how you can support the person you care for when they need to make a decision. Lesson 3. Supported decision-making MODULE 2 Le ss on 3 . S up po rte d de cis io n- m ak in g iS u p p o rt In te rv e n ti o n M an u al 43 z Memory loss Having memory loss will cause someone with dementia to sometimes forget the information that is needed to make a decision. z Problems with thinking or difficulties identifying and describing what someone with dementia thinks When a person living with dementia has problems thinking or describing what they are thinking, it might be more difficult for them to make a decision and share it with you. z Problems with making complex decisions Complex decisions, such as deciding whether or not to go outside alone, can be more challenging, therefore support is important. MODULE 2 Le ss on 3 . S up po rte d de cis io n- m ak in g Everybody needs to make decisions, whether they are big or small. Because the person you care for has dementia, your support is needed to help them clarify what they want. Decisions in line with the interests, needs and wishes of the person you care for will make them more independent. Decision-making can be difficult Why do you think decision-making can be difficult for a person living with dementia? Have a look at the reasons below to find out more. 2. How to make decisions in someone's best interest? iS u p p o rt In te rv e n ti o n M an u al 44 MODULE 2 1. Activity Le ss on 3 . S up po rte d de cis io n- m ak in g Do you support the person you care for to make decisions? You may want to write down the ways that you support their decision-making: Think about your own situation z Making decisions will become more difficult as the dementia progresses. z Your support for the person you care for to make their own decisions is needed. z Enabling them to make their own decisions might not be easy because of their dementia. iS u p p o rt In te rv e n ti o n M an u al 45 It is important to encourage the person you care for to do whatever they are still able to do. Supporting them in making decisions will help them to be more independent. Supporting them in making decisions might also improve their self-esteem. Manuel has Alzheimer's disease and is married to Maria. Manuel always used to lay out his clothes for the next day in the evening. Now he has dementia, he forgets to do so and sometimes wears the same clothes everyday. Let's look at an example 3. How to support someone with dementia to make everyday decisions? MODULE 2 Le ss on 3 . S up po rte d de cis io n- m ak in g z It is important to encourage the person that you care for they continue doing whatever they are still able to do. z Supporting the person you care for in making decisions will help them be more independent. z Support the person you care for in making decisions may add to their self-esteem. Keep in Mind1. Check your understanding Support for making everyday decisions. What do you think is the best way to make sure that Manuel wears clean clothes, without taking over his decisions at the same time? „ Before Maria and Manuel go to bed, Maria asks Manuel what he wants to wear the next day. She then asks Manuel to lay them out. „ Maria chooses clothes for Manuel and she asks him to lay them out. „ Maria chooses clothes for Manuel in the morning and gives them directly to Manuel to wear. iS u p p o rt In te rv e n ti o n M an u al 46 4. How to support someone with dementia to make everyday decisions as the dementia progresses? Let's look at an example After some time, Manuel feels stressed when choosing his clothes for the next day with Maria. He starts to worry about everything else he needs to do the next day and becomes anxious. This makes it difficult for Maria to support Manuel in making his decision. MODULE 2 Le ss on 3 . S up po rte d de cis io n- m ak in g z Supporting someone with dementia in making their own choices is possible, even as dementia progresses. z It may help to simplify decisions by limiting the number of choices or discuss the situation at a better time when the person is in a better mood or less worried. Remember What should Maria do? Please check all the responses that you feel are appropriate. „ Instead of supporting Manuel to choose his clothes the evening before, she asks him in the morning, at the beginning of the day. „ Maria lays out Manuel’s clothes in the evening. „ When Maria asks Manuel what he wants to wear she can give him only a few choices and, for example, ask him whether he wants to wear his blue or black trousers. 2. Check your understanding Support for making decisions as the dementia progresses. iS u p p o rt In te rv e n ti o n M an u al 47 5. How to support someone with dementia to make complex decisions? There comes a time in the course of dementia when someone may not be able to make complex decisions anymore, such as decisions concerning medical treatment. MODULE 2 Le ss on 3 . S up po rte d de cis io n- m ak in g What should the doctor and Chrissy do? Multiple answers are correct. „ Mary says what she wants, so she does not need support in making the decision whether or not to start with the medication. „ The doctor says that she should take the medication because it is good for her health. „ The doctor explains that taking the medication is good for her health, because it will slow down further damage in her brain because of her dementia. „ Her daughter says: "Mom, you know that you are forgetting things and that you have difficulties to find the right words when you want to say something. By taking the medication these problems may slow down a bit." 3. Check your understanding Support for making complex decisions (1). Let's look at an example Mary has vascular dementia and is taken care of by her daugther Chrissy. The doctor advises Mary to start using medication for her blood pressure. Mary says that she does not want to take pills because she does not understand why she needs them. iS u p p o rt In te rv e n ti o n M an u al 48 MODULE 2 Le ss on 3 . S up po rte d de cis io n- m ak in g What do you think are reasons that Jack can no longer make the decision himself? Please check all the responses that you feel are appropriate. „ Jack is unable to understand the information that is relevant to making the decision. „ Jack does not agree with the doctor. „ Jack is unable to communicate his decision (by talking, using body language or any other means). „ Jack is unable to use or weigh the information as part of the decision-making process. 4. Check your understanding Support for making complex decisions (2). Let's look at another example Jack who has dementia lives with his wife, Ella. Jack’s condition deteriorates. Ella decides to make an appointment with the doctor without Jack to discuss his medical condition and to make a decision regarding his medication. Ella discusses the issue with Jack’s sister as well, who asks her what she thinks Jack would have decided before he was diagnosed with dementia. Ella talks to the doctor and tries to imagine what Jack would have decided if given all the information. iS u p p o rt In te rv e n ti o n M an u al 49 The capacity to make a decision may be affected by the following considerations: z The type of decision being made. Someone with dementia might still be able to choose what kind of clothes to wear, but perhaps not whether to take medicines. z Change over time. Imagine that Jack had a severe infection that made him very confused. After this infection is cured, he might be able again to decide whether or not to take the medication. z Can be difficult to assess. Sometimes it is not clear, in which case there is no other alternative other than to help the person living with dementia make a decision that is in their best interest. MODULE 2 Le ss on 3 . S up po rte d de cis io n- m ak in g z Someone with dementia can be involved in making complex decisions, such as medical decisions, with the right support. z Support for making complex decisions should focus on providing correct information to help the person you care for understand what the consequences of the decision are. Remember iS u p p o rt In te rv e n ti o n M an u al 50 You can make decisions in the best interest of a person living with dementia by taking the following aspects into account. z Their past and present wishes and feelings (and, in particular, any relevant statement written when they did not have dementia). z Beliefs and values that may have influenced the person’s decision when he or she did not have dementia. z The views of anyone named by the person you care for as someone to be consulted to help with making decisions. z Be aware that the best interest of the person you care for is not always the same as your own best interest or that of other family members. In the end, it is the best interest of the person you care for that counts, since the decision concerns them. z Take into account that someone’s past wishes can be different from their present ones. Preparing for decisions To prepare for decisions that you might have to make for the person living with dementia it is important to: z Gather the information you need to make informed choices for the person as early in the course of the disease as possible. z Talk about decisions with your family, friends, doctor and any others close to you to help with decisions that are important to you both. z Prepare instructions that accurately reflect the wishes of the person living with dementia, in accordance with your country’s law (advance directives), and inform each other and your doctor about your preferences and decisions concerning medical treatment. MODULE 2 Le ss on 3 . S up po rte d de cis io n- m ak in g Remember iS u p p o rt In te rv e n ti o n M an u al 51 Think of the following choices when you prepare instructions that accurately reflect the wishes of the person you care for. MODULE 2 Le ss on 3 . S up po rte d de cis io n- m ak in g 2. Activity z Where does the person you care for prefer to live if it is no longer possible to stay at home? z What aspects of home/community/facility care are important to the person you care for? z Who does the person you care for want in charge of their finances when they are no longer capable of doing it? z How does the person you care for want to be treated at the end of their life? z Are there medical treatments that the person you care for wants to receive or refuse? z What does the person you care for want when eating is no longer possible? Would they want to get a feeding tube? z Does the person you care for have any particular fears or concerns about medical treatments? iS u p p o rt In te rv e n ti o n M an u al 52 You finished this lesson, well done! MODULE 2 Le ss on 3 . S up po rte d de cis io n- m ak in g iS u p p o rt In te rv e n ti o n M an u al 53 9 ✗Before Maria and Manuel go to bed, Maria asks Manuel what he wants to wear the next day. She then asks Manuel to lay them out. This is the right answer! This way Manuel is encouraged to do the things he is still able to do. 9 Maria chooses clothes for Manuel and she asks Manuel to lay them out. This answer is okay. It is good that Manuel is encouraged to lay out his clothes himself; however, it would have been better if Maria supported Manuel in making his own decision about what to wear. What do you think is the best way to make sure that Manuel wears clean clothes, without taking over his decisions at the same time? 8 Maria chooses clothes for Manuel in the morning and gives them directly to Manuel to wear. This is not a good option. Maria is taking control away from Manuel. It would be better if she supported him in making his own decision and encouraged him to do the things which he is still able to do, such as laying out the clothes. MODULE 2 ANSWERS - BEING A CARER Lesson 3. Supported decision-making 1. Check your understanding Support for making everyday decisions. AN SW ER S - B EI NG A C AR ER • Le ss on 3 iS u p p o rt In te rv e n ti o n M an u al 54 What should Maria do? 9 Instead of supporting Manuel in choosing what he wants to wear in the evening for the next day, she asks him in the morning at the beginning of the day. Correct! Maria still supports Manuel in deciding what he wants to wear, but he will not start to worry the evening before. 8 ✗Maria lays out Manuel’s clothes in the evening. This is not a good option. Maria is deciding for Manuel, while he still might be able to make his own decisions. 8 When Maria asks Manuel what he wants to wear in the evening she can give him only a few choices and, for example, ask him whether he wants to wear his blue or black trousers. In some cases this might be a good option. Even though Maria decides which trousers Manuel should wear the next day, Manuel can still make the final decision himself. However, in this case it might not be the best thing to do, because it might not solve the problem that Manuel will worry about the next day. MODULE 2 ANSWERS - BEING A CARER Lesson 3. Supported decision-making 2. Check your understanding Support for making decisions as the dementia progresses. AN SW ER S - B EI NG A C AR ER • Le ss on 3 iS u p p o rt In te rv e n ti o n M an u al 55 8 ✗Mary says what she wants, so she does not need support in making the decision whether or not to start the medication. This is not correct. Since Mary has dementia, we are not sure whether or not she understands why she needs the medication and what the consequences of taking or not taking the medication might be. 8 ✗✗The doctor says that she should take the medication because it is good for her health. Incorrect. Although it is true that the medication will be good for her health, the doctor is telling Mary what to do, which is not so good. What should the doctor and Chrissy do? Multiple answers are correct. 9 The doctor explains that taking the medication is good for her health because it will slow down damage to her brain resulting from her dementia. This is right! Her doctor’s explanation allows Mary to understand the importance of taking the medication and will enable her to make an informed decision. 9 Her daughter says: “Mom, you know that you are forgetting things and that you have difficulties to find the right words when you want to say something. By taking the medication these problems may slow down a bit.” Correct! Using different words to explain the possible reasons for taking the medication might help Mary understand why taking the medication would be beneficial for her. MODULE 2 ANSWERS - BEING A CARER Lesson 3. Supported decision-making 3. Check your understanding Support for making complex decisions (1). AN SW ER S - B EI NG A C AR ER • Le ss on 3 iS u p p o rt In te rv e n ti o n M an u al 56 9 ✗Jack is unable to understand the information relevant for the decision. 8 ✗Jack does not agree with the doctor. 9 ✗Jack is unable to communicate his decision (by talking, using body language or any other means). 9 ✗Jack is unable to use or weigh the information as part of the decision-making process. What do you think are the reasons that Jack can no longer make the decision himself? Multiple answers are correct. MODULE 2 ANSWERS - BEING A CARER Lesson 3. Supported decision-making 4. Check your understanding Support for making complex decisions (2). AN SW ER S - B EI NG A C AR ER • Le ss on 3 iS u p p o rt In te rv e n ti o n M an u al 57 1. The importance of involving family and friends It might be difficult to involve others caring for the person living with dementia. You could think that others will not be able to provide care as well as you can, that they do not have time or might say ‘no’ when asked for help. As time progresses, the person you care for will need more and more help with daily activities. Therefore, it is important to involve others so that the tasks can be shared. It can also be helpful to have someone to talk to who understands your situation and feelings. Do not wait too long, since help early on will allow you to continue providing care to your family member or acquaintance in the long term. Why is this lesson important? Sharing caregiving responsibilities with other people will help you to continue providing care in the long term. How will this lesson help me? By practicing the skill ‘asking for help’. What will I learn? 1. The importance of involving family and friends. 2. Types of help and support that you might need. 3. Effectively asking for help from others. MODULE 2 Le ss on 4 . I nv ol vin g ot he rs Lesson 4. Involving others iS u p p o rt In te rv e n ti o n M an u al 58 2. Types of help and support that you might need First let’s look at an example to find out whether Li, David and Fatima are receiving help, and if so, what kind of help. z Li takes care of her mother who has dementia. She receives no help from others. She spends a lot of time taking care of her mother and feels overwhelmed. She would like to get some help from others. z David takes care of his wife who has dementia. David has involved his two sisters in the care. The sisters regularly take his wife out for shopping or help clean the house. z Fatima takes care of her husband who has dementia. Fatima receives help from her family, friends and neighbours. Some helpers assist with shopping or cleaning the home, others take her husband for a walk or just listen to the difficulties she has with his memory loss. z Friends: Mohammed is always there to listen when I need it. The types of help and support that Fatima receives are presented below. Practical help z Family: once a month my sister helps with cleaning the house. z Friends: once a week my friend Hiba comes over to help with shopping and cooking. z Family: several family members take my husband out for a walk on a regular basis. Help with pleasant activities Emotional support MODULE 2 Le ss on 4 . I nv ol vin g ot he rs z Acquaintances/neighbours: my neighbours help to find information on dementia. Providing information iS u p p o rt In te rv e n ti o n M an u al 59 What kind of help do you receive? Please write down the types of help that you receive in the spaces below. If the help you receive is not listed below, use the ‘Other help’ box at the end to fill in your answer. Do your family, friends, neighbours or others provide: Practical help? Emotional help? Help with pleasant activities? 1. Activity MODULE 2 Le ss on 4 . I nv ol vin g ot he rs iS u p p o rt In te rv e n ti o n M an u al 60 Information? Other help? 1. Activity Keep in mind that sharing care tasks is common. It may allow you to do something pleasant for yourself, run an errand without having to bring the person you care for, or just enjoy a well-deserved break. Tip MODULE 2 Le ss on 4 . I nv ol vin g ot he rs iS u p p o rt In te rv e n ti o n M an u al 61 Your own support network Take a look at your own network as stated in the previous pages, what do you see? Please select the response that applies to the help that you receive. „ I receive help in one category. It is very good that you are already involving others. You might want to receive help in other ways too. Think about people who might be able to help you. „ I receive help in more than one category. It is very good that you are already involving others in caring for your family member or acquaintance. If needed, you can ask for help from other people as well. Perhaps the examples helped you identify people you had not considered before. „ I do not receive help. Keep in mind that providing care can be difficult. Think about ways to involve others in sharing the tasks. Remember that you do not know whether people will want to help unless you ask. It can be difficult to find help if you don’t have family nearby or live in a rural or isolated area, or if your family refuses to help. Think about alternatives such as your faith community, contacting your doctor for advice, or your national / local dementia association. 2. Activity MODULE 2 Le ss on 4 . I nv ol vin g ot he rs iS u p p o rt In te rv e n ti o n M an u al 62 What would you like to get more help with? Before you ask someone for help, it is important to know what it is you would like to ask. It can help to make a wish list of your needs. Let’s first have a look at Li, David and Fatima. You can see their wish lists below. Li I would like one evening for myself to do a hobby or activity. I would like help with cleaning the house. David I would li ke to hav e someone I can talk to about my feelings. Fatima I would like to get into contact with other carers to share my experiences and receive tips. MODULE 2 Le ss on 4 . I nv ol vin g ot he rs iS u p p o rt In te rv e n ti o n M an u al 63 Make a list of wishes that seem achievable Wish 1 Wish 2 Wish 3 What is on your wish list? Make your own wish list for the help or support that you would like to receive. Wishes could be for example: z I would like help with bathing the person I care for. z I would like advice on how to deal with the person I care for. z I would like adjustments to be made in my home to accommodate the care needs of the person I care for. List those wishes that you think are achievable. If you know beforehand that you might not be able to achieve a certain wish, it might be better to list a different wish that is more attainable. For instance, Li would prefer to hire someone to clean the house every week. However, Li cannot afford this and realizes that her wish is not realistic. She could hire someone to clean the house once every two weeks or ask someone who she does not need to pay, such as a friend or relative. She can ask the person to clean the whole house, or to help with specific tasks that are difficult for her, such as cleaning the floors. 3. Activity MODULE 2 Le ss on 4 . I nv ol vin g ot he rs iS u p p o rt In te rv e n ti o n M an u al 64 Now it is time to think about who could help. Some people have no problem asking for help, other people are not used to it but do not mind giving it a try. There are also people who find it very difficult to ask for help. The next section will teach you skills to ask for help effectively. Keep in mind your support wish list. 3. Effectively asking for help from others If you would like to ask others for help it is important to do so in an effective way. This means that you should be able to talk to others about your thoughts, feelings and experiences. It also means that you stand up for yourself. Things that will help you to effectively ask for help: z Think about what you want or need and what your feelings are about the current situation. z Describe your problem in one or two sentences. z Describe your thoughts and feelings clearly, so that the other person can understand your point of view. Who can I turn to? z Be honest and direct. z Keep the feelings of the other person in mind. z Give detailed information about what kind of help you need. z Be flexible: maybe you won’t get exactly what you asked for, but you will get something that will be helpful. z Break it down into smaller parts – it’s usually easier for people to say yes to a little request than to a big one. z If you reach a point where you do not know what to do anymore: take a break – go back to the discussion at a future time. For example: agree to think about it and talk again tomorrow afternoon. z If appropriate, offer to do the task together first. z Don’t give up. It may take many attempts before things change. z Asking for help will not always lead to the result you want, but it is important that you feel able to ask for it. MODULE 2 Le ss on 4 . I nv ol vin g ot he rs iS u p p o rt In te rv e n ti o n M an u al 65 „ Li tells her sister that she wants to take care of their mother, but that she just needs a short break from caregiving during the week. She says: “I would like to discuss how you could help in a way that is possible for you.” Which of the following examples represents an effective way to ask for help? Please check the one response that you think is correct. She knows who to turn to for help and decides to ask her sister. Li would like to have an evening to herself once a week. She tries to ask for help in three different ways. Let’s have a look at Li again „ Li decides to attend a weekly one-hour class in the evening to have a break from providing care. However, she does not discuss with her sister the importance of having a break during the week. When she asks her sister to take care of their mother for an hour, her sister said: “Sorry, I have no time.” Li cancels her class. „ Li approaches her sister by saying, “I’m sick and tired of you not doing anything! You never have time to help me care for our mother!” 1. Check your understanding Asking for help effectively. MODULE 2 Le ss on 4 . I nv ol vin g ot he rs iS u p p o rt In te rv e n ti o n M an u al 66 Your own plan to involve others Make your own plan to involve others in caring for your family member or acquaintance with dementia. Now think of your wishes and who you can turn to for help. Imagine yourself in a situation in which you will ask for help. Please answer the following questions in the boxes below. Who would you like to ask for help? What would you like to say? What would you do if the person does NOT want to help? What would you do if the person does want to help? 4. Activity MODULE 2 Le ss on 4 . I nv ol vin g ot he rs iS u p p o rt In te rv e n ti o n M an u al 67 You finished this lesson, well done! MODULE 2 Le ss on 4 . I nv ol vin g ot he rs iS u p p o rt In te rv e n ti o n M an u al 68 MODULE 2 AN SW ER S - B EI NG A C AR ER • Le ss on 4 8 Example 2 Passive. This is not an effective way of asking for help. Her sister may not be aware that Li is feeling overwhelmed. Li is not being honest about her feelings and is trying to avoid a conflict with her sister. She does not stand up for herself. It is a passive way of asking for help. 8 Example 3 Aggressive. This is not an effective way of asking for help. Li becomes angry. However, her sister may not be aware that Li is feeling overwhelmed, because she did not clearly mention this. She does not approach her sister in a respectful way. It is an aggressive way of asking for help. Which of the examples is an effective way to ask for help?✗ 9 Example 1 Effective. This is an effective way of asking for help. Li stands up for herself, says what she is thinking and is honest about her need for a regular break. She also keeps the interests of her sister in mind. 1. Check your understanding Asking for help effectively. ANSWERS - BEING A CARER Lesson 4. Involving others M od ul e 3 . C ar in g fo r m e CARING FOR ME Lesson 1. Reducing stress in everyday life Lesson 2. Making time for pleasant activities Lesson 3. Thinking differently 3 MODULE iS u p p o rt In te rv e n ti o n M an u al 70 Why is this lesson important? It is important to take care of yourself while caring for another person. This lesson will help you to keep providing care. How will this lesson help me? This lesson helps to reduce stress and renew your energy with exercises that do not take much time. What will I learn? 1. The importance of relaxing. 2. Different ways to relax: z basic breathing; z mindful breathing; z neck movements; z number counting; z imagery; z total stretching; z muscle relaxation. 3. Relaxing at any time and any place. MODULE 3 Le ss on 1 . R ed uc in g st re ss in ev er yd ay lif e Lesson 1. Reducing stress in everyday life iS u p p o rt In te rv e n ti o n M an u al 71 1. The importance of relaxing Let’s look at an example Diana: no time, no energy Diana takes care of her husband Dan who has dementia. She feels increasingly tense. A friend advises her to try to relax and not ask too much of herself. Diana tells her friend that she does not have the time or energy to relax. Her friend explains that there are ways to relax that do not take much time, and that relaxing might give Diana renewed energy that could help her get tasks done more easily. Diana succeeds in relaxing Diana decides to follow her friend’s advice and tries the breathing exercise her friend showed her. When Diana sees her friend again she says: “Thank you for the good advice. Although I still have a lot to do, I feel less tense.” Diana decides to do the breathing exercise every time she is feeling tense. Relaxation: z makes you feel less tense; z might give you renewed energy; z may make it easier to get tasks done; and z does not have to take much time. MODULE 3 Le ss on 1 . R ed uc in g st re ss in ev er yd ay lif e Reminder iS u p p o rt In te rv e n ti o n M an u al 72 2. Different ways to relax There are different ways you can relax. Try and see which one(s) suit you best. Before you try an exercise ask yourself: “How tense am I feeling”? After the exercise, ask yourself again. This might help you understand whether this type of relaxation helps you feel less tense. In this lesson you will find seven relaxation exercises. The first three exercises will take only a few minutes (i.e. 5 minutes max.). The other exercises will take a little longer (i.e. 10-15 minutes max.). Use the scale below of 1-10 and tick what number describes how tense you are feeling now, 1 is very small amount of tension and 10 is very high amount of tension. VERY SMALL VERY HIGH 1 42 53 6 7 8 9 10 MODULE 3 Le ss on 1 . R ed uc in g st re ss in ev er yd ay lif e Focusing on your breathing is relaxing. By doing a breathing exercise you could reduce tension. This exercise will take: less than 5 minutes. Caution: if you experience difficulty breathing, this exercise might not be the best option for you. This is how you do it: z When sitting down, sit up straight in your chair with your back against the back of your chair. z When standing, stand up straight. z Put both of your feet flat on the surface. z Focus on your breathing. z Keep breathing like you are used to. z Try to feel how you breathe. Put your hand on your stomach to feel how you inhale and exhale. z Exhale from your mouth and pull in your stomach as much as possible. z Follow your breathing in this manner a couple of breaths and then stop the exercise. 1. Relaxation activity - Basic breathing iS u p p o rt In te rv e n ti o n M an u al 73 This exercise will help you feel calm and reduces stress. You will breathe with your stomach according to a rhythm. This exercise will take: 5 minutes. This is how you do it: z Sit straight in a chair and make sure your face and shoulders are relaxed. z Bring your hands to your stomach and breathe into it. z Breathe in for 4 counts and out for 8 counts, at a comfortable pace. z Your stomach should expand with each inhale and contract with each exhale. z Return to your normal breathing and spend one minute just observing yourself breathing and noticing how you feel. z Practice listening to your own thoughts without negative judgement. z If your mind wanders, refocus on breathing and meditation. With this exercise you will feel less tension in your neck. It will also increase the blood flow to your brain. This exercise will take: 5 minutes. This is how you do it: z Make sure to move slowly and with attention. z Bend your neck forward and backward. z Inhale while you lift your head up and back. Exhale while you drop your chin to your chest. z Rotate your chin from side to side. z Inhale when your chin is in the centre. Exhale when you look to the side. z Drop your ear towards your shoulder. z Inhale when you are in the centre. Exhale when you drop your ear to your shoulder. z Repeat 5 times. Relaxation exercise - Neck movements MODULE 3 2. Relaxation activity - Mindful breathing 3. Relaxation activity - Neck movements Le ss on 1 . R ed uc in g st re ss in ev er yd ay lif e iS u p p o rt In te rv e n ti o n M an u al 74 This exercise will take: 5 minutes. This is how you do it: z Sit or lie down comfortably in a quiet place. z Breath slowly. z With each breath, take at least 3 seconds to breathe in and 6 seconds to breath out. z Focus on your breathing and your lower stomach when you breathe until you feel calm and peaceful inside your heart and mind. z Say the word ‘relax’ whenever you breathe out. z Tell yourself that you will start counting down from 20 to 1. You can relax by focusing on your breathing and counting back from 20 to 1. z Tell yourself that you will double your level of relaxation for each and every count, and will be totally relaxed when you reach 1. z Start counting down from 20 to 1 slowly. Say the word ‘relax’ whenever you count (that is, take a deep breath, say ‘20’, breathe out slowly and say ‘relax’, take a deep breath, count ‘19’, breathe out slowly and say ‘relax’, and so on). z Now repeat this exercise but with your eyes closed. Relaxation exercise - Number counting MODULE 3 4. Relaxation activity - Number counting Le ss on 1 . R ed uc in g st re ss in ev er yd ay lif e iS u p p o rt In te rv e n ti o n M an u al 75 You can relax by imagining you are in a place or surrounded by people and things you like. This exercise will take: 5 minutes. Before completing this exercise, take a look at the helpful guidelines below. z Only imagine places, people and things you like. z Imagine what you can hear, feel, smell, and/or taste if you were in that place. z Try to think of very specific details of the place, thing or person. For example, how does the surface of the thing feel and how does it smell? Now try to relax while imagining that you are in a place or with the people or things that you like. This is how you do it: z Sit or lie down comfortably in a quiet place. z Breathe slowly. z With every breath, take at least three seconds to breathe in and at least six seconds to breathe out. z Focus on your breathing and your lower stomach when you breathe until you feel peaceful inside. z Imagine you are in a place or surrounded by things or people you like. z Now do this exercise again but close your eyes. MODULE 3 5. Relaxation activity - Imagery Le ss on 1 . R ed uc in g st re ss in ev er yd ay lif e iS u p p o rt In te rv e n ti o n M an u al 76 This exercise is particularly helpful when your muscles feel tense. This exercise will help you relax by tensing and relaxing your muscles. This exercise will take: 10-15 minutes Caution: if you have any injuries or any other physical limitations, this may not be the best exercise for you. Try one of the other exercises. Below are some general instructions for you to keep in mind. z When you are ready to begin, tighten the muscle group described. Make sure that you can feel the tension, but no pain. Keep the muscle tensed for approximately 5 seconds. z Relax the muscles and keep it relaxed for approximately 10 seconds. It may be helpful to say ‘relax’ as you relax the muscle. z When you have finished the muscle relaxation, remain seated for a few moments allowing yourself to become alert. This is how you do it: z Right hand and forearm: make a fist with your right hand. Hold for 5 seconds and then relax for 10 seconds. Don’t forget to breathe. It might be helpful to inhale while tensing your muscles and exhale while relaxing your muscles. Do the same for your left hand and forearm. z Right upper arm: bring your right forearm up to your shoulder to ‘make a muscle’. Hold for 5 seconds and then relax for 10 seconds. Do the same for your left upper arm. z Forehead: raise your eyebrows as high as they will go, as though you were surprised by something. Hold for 5 seconds and then relax for 10 seconds. z Eyes and cheeks: squeeze your eyes closed. Hold for 5 seconds and then relax for 10 seconds. z Mouth and jaw: open your mouth as wide as you can, as if you are yawning. Hold for 5 seconds and then relax for 10 seconds. MODULE 3 6. Relaxation activity - Muscle relaxation Le ss on 1 . R ed uc in g st re ss in ev er yd ay lif e Please continue the exercise on the following page. iS u p p o rt In te rv e n ti o n M an u al 77 z Neck: be careful as you tense these muscles. Face forward and then pull your head back slowly, as though you are looking up to the ceiling. Hold for 5 seconds and then relax for 10 seconds. z Shoulders: tense the muscles in your shoulders as you bring them up towards your ears. Hold for 5 seconds and then relax for 10 seconds. z Shoulder blades/Back: push your shoulder blades back, trying to almost touch them together, so that your chest is pushed forward. Hold for 5 seconds and then relax for 10 seconds. z Chest and stomach: breathe in deeply, filling up your lungs and chest with air. Hold for 5 seconds and then relax for 10 seconds. z Hips and buttocks: squeeze the muscles in your buttocks. Hold for 5 seconds and then relax for 10 seconds. z Right upper leg: tighten your right thigh. Hold for 5 seconds and then relax for 10 seconds. Repeat for your left upper leg. z Right lower leg: do this slowly and carefully to avoid cramps. Pull your toes towards you to stretch the calf muscle. Hold for 5 seconds and then relax for 10 seconds. Repeat for your left lower leg. z Right foot: curl your toes downwards. Hold for 5 seconds and then relax for 10 seconds. Repeat for your left foot. MODULE 3 6. Relaxation activity - Muscle relaxation (continued) Le ss on 1 . R ed uc in g st re ss in ev er yd ay lif e iS u p p o rt In te rv e n ti o n M an u al 78 Stretching your muscles can help to decrease tension. Stretching exercises are very convenient since you can do them anywhere and anytime. This exercise will take: 10 minutes. This is how you do it: z Stand up, or do this exercise in your chair. z Take a deep breath, all the way down to the bottom of your stomach, and slowly let it out. z As you exhale, feel the tension drain from your body. z Take one more breath and hold it for a moment… and let it out slowly. z With each breath you are becoming more and more relaxed. z Now, gently reach your arms out to the sides as though you were trying to touch the walls. z Relax your shoulders and stretch yourself a little. z Gently reach your arms out in front of you. z Feel the muscles in your back and shoulders loosen up. z Stretch out in front a little further. z And now reach up as high as you can. z Push up your arms towards the sky, as if you were trying to reach the sun. z Again, reach your arms out to the sides as though you were trying to touch the walls, as though you were trying to push them outwards. z Reach out in front of you. z Feel your muscles in your back and shoulders become looser and less tense. z Reach towards the sky one more time. z Reach as high as you can. z Try to touch the sun. z Lower your arms to your sides. MODULE 3 7. Relaxation activity - Total stretching Le ss on 1 . R ed uc in g st re ss in ev er yd ay lif e Please continue the exercise on the following page. iS u p p o rt In te rv e n ti o n M an u al 79 z Now, roll your shoulders back. z Feel the tension drain form your body. z Roll your shoulders back again. One more time roll your shoulders. z Now roll them forward. Forward again. One more time forward. z Now shrug your shoulders, lifting them up and then pushing them down. Shrug your shoulders again. Shrug them one more time. z Now another deep and refreshing breath and exhale all of the tension in your body. z Take one more breath…and exhale letting go of any remaining tension. MODULE 3 7. Relaxation activity - Muscle relaxation (continued) Le ss on 1 . R ed uc in g st re ss in ev er yd ay lif e iS u p p o rt In te rv e n ti o n M an u al 80 You can take some time to relax at any time of the day and in any place. Let’s look at an example Diana: relaxing while waiting in line Diana often feels tense when there is a long line in the store, as she is aware she still has many other things to do. She decides to do the breathing exercise while waiting in line. Afterwards, she feels less tense. You can also plan a specific time to relax, for example every day after lunch. You can choose what suits you best. If necessary, you can use a reminder to make sure that you do not forget to take some time to relax. 3. Relaxing at any time and any place z You can take some time to relax anywhere and at any time of the day. z Set a goal: try to do a relaxation exercise at least once a day. z You can plan a specific time to relax every day (if necessary, use a reminder). z You will benefit from having renewed energy and a better mood after doing the relaxation exercises. z Even a brief exercise can make a difference! z You will also be able to reduce feelings of tension and continue caring for your family member or acquaintance over the long term. MODULE 3 Keep in Mind Le ss on 1 . R ed uc in g st re ss in ev er yd ay lif e iS u p p o rt In te rv e n ti o n M an u al 81 Was this helpful for you? If not, there might be different reasons why relaxation was not helpful to you: z Perhaps you could not focus on relaxing. z Try again at another time! z Maybe you like an exercise, but you need some more practice to really benefit from it. Try to do this exercise regularly. z The exercise you chose may not have suited you. Try a different exercise! z The exercise you chose was too short. z Try this exercise again or do another one! If the exercises are still not helping you after these tips, try to do an activity you enjoy. Have a look at Lesson 2. Making time for pleasant activities in this module to find out which activities you may enjoy. MODULE 3 Le ss on 1 . R ed uc in g st re ss in ev er yd ay lif e You finished this lesson, well done! iS u p p o rt In te rv e n ti o n M an u al 82 1. The importance of pleasant activities Pleasant activities are important because caregiving can last a long time and doing pleasant activities can help you to relax and continue providing care. Pleasant activities can be small things such as going for a walk or talking to a friend. This may not always be easy, because providing care can be time- consuming and someone might have to take over the care for your family member or acquaintance while you are not there. Let’s see how Amy, Jose, and Umit experience caregiving and the importance of planning pleasant activities. Amy Amy takes care of her mother who is living with dementia. She dedicates most of her time to caregiving and rarely takes time for herself. She does not engage in any pleasant activities. Amy notices that recently she is more tired than usual and feels that she is not able to care for her mother as she did before. Why is this lesson important? It is important to take care of yourself while caring for another person. This lesson will help you to keep providing care. How will this lesson help me? This lesson will help you to take time for yourself and do pleasant activities to relax. What will I learn? 1. The importance of pleasant activities. 2. Barriers to doing pleasant activities. 3. Making pleasant activities achievable. 4. Doing pleasant activities together. MODULE 3 Le ss on 2 . M ak in g tim e f or p lea sa nt ac tiv iti es Lesson 2. Making time for pleasant activities iS u p p o rt In te rv e n ti o n M an u al 83 Jose Jose takes care of his brother who is living with dementia. Jose does not get a lot of sleep and rarely has time for afternoon naps. He recently started asking his sister to come by and help with caregiving so he can take a nap and read a magazine each afternoon. Umit Umit takes care of his wife who is living with dementia. Recently, he has hired a professional carer who stops by three times a week to help him care for her. When the professional carer is there, Umit reads the newspaper or goes for a walk. z If you are not able to make time for yourself, you can get very tired which may make you less able to continue providing care. z You can ask family and friends to help care for the person living with dementia so that you can take some time for yourself. z If it is affordable, you could hire a professional carer to help you care for your family member or friend so you can take some time for yourself. MODULE 3 Keep in Mind Le ss on 2 . M ak in g tim e f or p lea sa nt ac tiv iti es iS u p p o rt In te rv e n ti o n M an u al 84 Which pleasant activities would you like to do? Once you have some time for yourself, it can be hard to think of the things you would like to do. There are many possibilities and even in a short amount of time, you can still do an activity that you like. In this exercise you will make a list of pleasant activities that you would like to do. Please check at least two activities that you would like to do more often. If your favourite activity is not listed below, use the ‘other’ box to write your own activity. „ Do a crossword puzzle „ Watch TV „ Visit friends or family „ Cook „ Listen to music „ Do crafts „ Read „ Take a nap „ Go shopping „ Take a walk „ Exercise „ Other: 1. Activity MODULE 3 Le ss on 2 . M ak in g tim e f or p lea sa nt ac tiv iti es iS u p p o rt In te rv e n ti o n M an u al 85 2. Barriers to doing pleasant activities Let’s go back to Amy’s example Amy dedicates most of her time to caring for her mother who has dementia. She does not receive any help and is tired all the time. She is struggling to care for her mother and has stopped doing the things she likes because she feels that she does not have enough time. Eventually, Amy is so tired that she decides to ask her friend for help. She is now able to make some time for herself and engage in pleasant activities. Amy feels more energized afterwards. She also feels that she is better able to handle the care for her mother as a result. Other reasons you may feel unable to do pleasant activities Not having time was the reason that Amy did not feel as though she could do any pleasant activities. However, there are several other reasons. MODULE 3 Le ss on 2 . M ak in g tim e f or p lea sa nt ac tiv iti es iS u p p o rt In te rv e n ti o n M an u al 86 Do you recognize any of the following? Please select any that may apply to you. „ No time. You might feel that you are too busy and not able to find any spare time. It is really important that you try to make some time during the day or in the evening to do something you enjoy. If you have little time, there are some pleasant activities that do not take up a lot of time and which you can fit in around your day. „ No energy. You might have less energy because caregiving can be tiring. Although it is hard to imagine, it is likely that you will feel more energized after doing something you like. „ No money. You might think that you have to spend lots of money to do something pleasant. Pleasant activities do not have to be costly. You can keep the activities as simple as you want them to be. For example, things like meeting a friend for a cup of tea or going for a walk by yourself do not cost money. „ Not in the mood. You might not feel like doing pleasant activities. Although it is hard to imagine, it is likely that your mood will be better after doing something you like. On the other hand, not doing pleasant activities will likely worsen your mood. „ Physical limitations. You might think that if you have physical limitations, you are not able to do a pleasant activity. If you have physical limitations, think of activities that you can do despite your limitations. There are many possibilities, such as reading, playing a game or talking to a friend. „ Guilt. You might feel guilty because you will feel that you are running away from the person you care for. You need time to do things you like, relax and recharge so that you can provide adequate care for them. Being a good carer means taking care of yourself as well. 2. ActivityMODULE3 Le ss on 2 . M ak in g tim e f or p lea sa nt ac tiv iti es iS u p p o rt In te rv e n ti o n M an u al 87 Suggestions for doing pleasant activities z Consider asking someone to help you with some of your day-to-day tasks. z Consider the impact of not doing certain tasks at that moment. For example, what is the impact of not cleaning the house every day? You may realize that you can be more flexible and have more time as a result. z Try to do one activity at a time and finish the things you have started as much as possible. If you leave something unfinished, it may make you feel dissatisfied. You may not be able to focus entirely on your next activity. You could feel more energized if you complete an activity before taking on another. z Think about ways to better manage your time. Consider using an agenda or calendar. z Talk to someone about how you might be able to better manage your time. Seeking another opinion or suggestions may be helpful. MODULE 3 Le ss on 2 . M ak in g tim e f or p lea sa nt ac tiv iti es Consider asking for help. iS u p p o rt In te rv e n ti o n M an u al 88 Now rate how achievable it would be for you to do the pleasant activities that you chose earlier in this lesson (see the exercise on page 84). 3. Making pleasant activities achievable Read every activity and consider whether the activity is: 1. unachievable; 2. unlikely to be achievable; 3. somewhat achievable; 4. achievable; 5. very achievable. Please check at least two activities that you would like to do more often. If your favourite activity is not listed below, use the ‘other’ box to write your own activity. „ Do a crossword puzzle „ Watch TV „ Visit friends or family „ Cook „ Listen to music „ Do crafts „ Read „ Take a nap „ Go shopping „ Take a walk „ Exercise „ Other: MODULE 3 3. Activity Le ss on 2 . M ak in g tim e f or p lea sa nt ac tiv iti es Unlikely to be achievable Somewhat achievable Achievable Very achievableUnachievable iS u p p o rt In te rv e n ti o n M an u al 89 4. Doing pleasant activities together It can be very rewarding to do pleasant activities with the person that you care for. However, it might be difficult at first to think of pleasant activities that are suitable for both of you. In this exercise we will make a list of the pleasant activities that you can do with the person you care for. First, take a look at Jose’s experience from the previous exercise. Jose Jose takes care of his brother who is living with dementia. In addition to taking a nap while his sister takes care of his brother, Jose takes his brother out for walks around the neighbourhood. His brother enjoys the walks and Jose is also able to get some exercise and fresh air. Which of your activities can you do today? It is a good idea to start with your pleasant activities as soon as possible and incorporate them into your routine. Which of your activities can you do today? If it is inconvenient to start an activity today, think about the pleasant activities you could do tomorrow. Start with small goals and add more pleasant activities after you feel successful with your first try. Rethink the activities that you would like to do to help make them more achievable. z Pleasant activities should be achievable. z There are different reasons why you can feel that pleasant activities are not achievable. z There are ways to undertake pleasant activities despite these reasons. Remember MODULE 3 Le ss on 2 . M ak in g tim e f or p lea sa nt ac tiv iti es iS u p p o rt In te rv e n ti o n M an u al 90 Please select at least one activity that you would like to do together more often. If an activity is not listed below, use the ‘other’ box at the bottom of the list to add the activity that you would like to do. Keep in mind that despite the challenges, pleasant activities are good for you and are necessary to ensure that you are able to keep providing care to your family member or acquaintance. What would you like to do more often? Take a look at the list below for examples that you can do with the person that you care for. „ Listen to music „ Play a musical instrument „ Take a relaxing walk „ Listen to or read stories, newspaper articles, poems, etc. „ Go out to eat together „ Cook and prepare snacks „ Watch birds or animals „ Do handiwork or crafts „ Look at photos „ Watch the clouds or explore nature „ Recall and discuss happy memories „ Have friends over to visit „ Other: Activity MODULE 3 Le ss on 2 . M ak in g tim e f or p lea sa nt ac tiv iti es iS u p p o rt In te rv e n ti o n M an u al 91 MODULE 3 Le ss on 2 . M ak in g tim e f or p lea sa nt ac tiv iti es You finished this lesson, well done! iS u p p o rt In te rv e n ti o n M an u al 92 Why is this lesson important? Your thoughts determine how you feel. Unhelpful thoughts can make us feel bad. How will this lesson help me? This lesson will help you think differently and change your unhelpful thoughts into helpful ones. What will I learn? 1. Thoughts determine how we feel. You cannot change what happens, but you can change your response. 2. Learn to think differently by changing unhelpful thoughts into helpful ones. 3. Thinking differently makes you feel better. 1. Thoughts determine how we feel There are different ways to deal with stressful events. One way is to think differently. Let’s look at an example. MODULE 3 Le ss on 3 . T hi nk in g di ffe re nt ly Lesson 3. Thinking differently It is not an event that makes you feel angry, sad, happy or guilty, it is how you think about it. An event can be anything. Here are a few examples: z The person you care for becomes angry when you ask him/her something. z Your family member who promised to help you does not turn up or cancels on you. z The person you care for cannot find something. z Your family member is blaming you for not providing the right care. Many people think that their feelings are a direct consequence of an event. However, it is the way that you think about the event that determines how you feel. iS u p p o rt In te rv e n ti o n M an u al 93 What do you think Jo should do? Please check all the responses that you feel are appropriate. „ Tell Max that she cannot help him search now and leave. „ Search for the keys until she finds them. „ Tell Max that he should be more careful not to lose his keys in the future. „ Think to herself, “Max has dementia and is sometimes worried when he loses things. I can take some time to help and then go.” Then call her friend and explain that she will come later. MODULE 3 1. Check your understanding Feelings and thoughts. z There are many different ways of dealing with events. z Negative thoughts can make us feel bad. z By thinking differently, you might feel better and be able to better deal with events. Keep in mind Le ss on 3 . T hi nk in g di ffe re nt ly Lost keys Jo is married to Max who is living with dementia. She is about to leave the house to visit a friend. Max says, “I can’t find my keys! You cannot leave me without keys!” Jo thinks to herself: “I cannot leave him alone anymore.” She starts to feel miserable. iS u p p o rt In te rv e n ti o n M an u al 94 Jo thinks to herself when Max cannot find his keys: “I cannot leave Max alone anymore.” This makes her feel miserable. This means that Jo is thinking in an unhelpful way. Unhelpful thoughts can make it harder to respond in useful ways to situations like this. Instead, Jo could think: “Max has dementia and is sometimes worried when he loses things. I can take some time to help and then go.” This different way of thinking will probably make Jo feel better and help her stay calm and compassionate. Helpful thoughts can make it easier to respond in useful ways to situations like these. Jo’s unhelpful and helpful thoughts z It is not the event itself that makes you feel angry, sad, happy or miserable. z Helpful or unhelpful thoughts can determine how you respond to a situation. z By changing your thoughts, you could help change the way you feel. MODULE 3 Keep in mind Le ss on 3 . T hi nk in g di ffe re nt ly iS u p p o rt In te rv e n ti o n M an u al 95 Can you indicate which of Aryan’s thoughts may help make her feel better? Aryan might think… „ Making time for myself helps me to provide better care. „ I am a bad carer if my family member is not always happy. „ Maybe the person living with dementia will become better. „ No one understands how hard it is to care. „ No one can provide the care the way I do. „ Asking others for help can help me to share the duties of care. „ Dementia is a disease, it is not my or anyone else’s fault. Unhelpful thoughts make you feel bad Aryan has been caring for her family member who is living with dementia for several years now. She has many thoughts. Some make her feel worse, some make her feel better. z Unhelpful thoughts can make you feel bad. z Helpful thoughts are important to feel better and will assist you in dealing with situations in a more useful way. z To feel better, it is important to identify unhelpful thoughts. MODULE 3 Keep in mind2. Check your understanding Thoughts that can make you feel better. Le ss on 3 . T hi nk in g di ffe re nt ly iS u p p o rt In te rv e n ti o n M an u al 96 How do you think Xavier is feeling? Please check all the responses that you feel are appropriate. „ Angry „ Guilty „ Happy „ Lonely „ Sad „ Supported „ Upset 2. Learn to think differently by changing unhelpful thoughts into helpful ones What if Xavier instead thinks to himself, “if Gabriel thinks I need help, he must care about me and my father and wants to make sure we are doing well”? MODULE 3 3. Check your understanding How thoughts influence our feelings. Le ss on 3 . T hi nk in g di ffe re nt ly Xavier meets his friend Gabriel Xavier takes care of his father, who is living with dementia. While he is shopping, he meets his friend Gabriel, who asks, “How are you? Do you need any help caring for your father?” Xavier thinks to himself, “if Gabriel thinks I need help, he must think that I am a bad carer”. How does Xavier feel now? Please check all the responses that you feel are appropriate. „ Angry „ Guilty „ Happy „ Lonely „ Sad „ Supported „ Upset 4. Check your understanding Match feelings to a helpful thought. Sometimes you cannot change the things that happen (events), but you can change your response (thoughts). Keep in mind iS u p p o rt In te rv e n ti o n M an u al 97 „ I have to do everything alone. „ The person I care for does not care about me anymore. „ When the person I care for is not happy, it means that I am a bad carer. „ Maybe the person I care for will get better. „ I must always be available for the person I care for. „ I should not consider my own needs if I want to be a good carer. „ No one understands how hard it is to care. „ No one can provide care the way I do. „ He/she being diagnosed with dementia has complicated my life. „ I have no time for others as a carer. „ I feel sorry for the person I care for. „ Other people are better off than the person I care for and I. „ Other: MODULE 3 Le ss on 3 . T hi nk in g di ffe re nt ly Which unhelpful thoughts do you have? Please check the unhelpful thoughts that you have or provide additional examples. In an earlier example you indicated which thoughts are helpful and which may be unhelpful. Below you will find a list of unhelpful thoughts. 1. Activity iS u p p o rt In te rv e n ti o n M an u al 98 Changing your unhelpful thoughts to helpful ones can make you feel better.In an earlier example you indicated which thoughts are helpful and which may be unhelpful. Below you will find a list of helpful thoughts. Please check the helpful thoughts that you have or provide additional examples. „ It is okay to take time to relax as it will help me to provide a good standard of care. „ Sharing my feelings with others helps to take the pressure off. „ Asking for help from others can help me to share the burden of care. „ Making time for myself helps me to provide better care. „ Dementia is a disease; it is not my or anyone else’s fault. „ I do not have to give others their way all the time. „ Other: Which helpful thoughts do you have? MODULE 3 Keep in mind Le ss on 3 . T hi nk in g di ffe re nt ly 2. Activity iS u p p o rt In te rv e n ti o n M an u al 99 3. Thinking differently makes you feel better You cannot change the things that happen, but you can change your response. In other words, you cannot change events but you can change your thoughts. Example 1: Wei Wei takes care of his wife Xu, who is living with dementia. He writes the following: Name: Wei Yesterday my wife Xu and I visited some friends. We had tea together. Xu dropped her cup on the floor. When they started to clean the floor, Xu did not help, but she stood in the way. She did not apologise for her behaviour, but laughed. Our friends are upset with my wife and won’t invite us to their house again. My wife has dementia and is unable to think and act in the same way that she used to. Our friends won’t blame my wife as I have explained to them that she has dementia and that her thinking has declined. Instead of feeling worried and ashamed, I would have felt happy about the day we spent with our friends. What was the event that made you feel upset or miserable? What were your unhelpful thoughts? What would be more helpful to think? How could the helpful thoughts make you feel? MODULE 3 Le ss on 3 . T hi nk in g di ffe re nt ly iS u p p o rt In te rv e n ti o n M an u al 100 Example 2: Helen Helen takes care of her brother Matty, who is living with dementia. She writes the following: MODULE 3 Name: Helen A week ago, our sister came to visit us. At the end of the day, I said to Matty, “it was a great day, don’t you think?” Then he said that he was not sure, because he could not remember exactly what we had been doing. He said that he was tired and wanted to sleep. Nothing we do is worthwhile because Matty forgets everything. Everything is ruined because of his dementia. Even though he cannot remember what we did, I know that he had a great day too, and that is what counts. He smiled a lot today and kept saying how nice it was that our sister came. Instead of feeling sad and miserable, I would have felt happy about the day we spent with our sister. What was the event that made you feel upset or miserable? What were your unhelpful thoughts? What would be more helpful to think? How could the helpful thoughts make you feel? Le ss on 3 . T hi nk in g di ffe re nt ly iS u p p o rt In te rv e n ti o n M an u al 101 Now it’s your turn. In the next exercise you will work to change your unhelpful thoughts into helpful ones. Try to think of a recent event that made you feel upset and answer the questions below. You can refer back to the examples on the previous page for some help. MODULE 3 Le ss on 3 . T hi nk in g di ffe re nt ly Name: What was the event that made you feel upset or miserable? What were your unhelpful thoughts? What would be more helpful to think? How could the helpful thoughts make you feel? iS u p p o rt In te rv e n ti o n M an u al 102 Name: What was the event that made you feel upset or miserable? What were your unhelpful thoughts? What would be more helpful to think? How could the helpful thoughts make you feel? Practice makes perfect. Do you want to try one more time? Please answer the questions below for a different event. MODULE 3 Le ss on 3 . T hi nk in g di ffe re nt ly iS u p p o rt In te rv e n ti o n M an u al 103 You finished this lesson, well done! MODULE 3 There are events in which feeling upset, miserable, sad or angry is inevitable. Examples include: if the person you care for needs to go to the hospital or if you lose a dear friend or family member. To change your thoughts in such events would not do justice to your feelings. Keep in mind Le ss on 3 . T hi nk in g di ffe re nt ly z You cannot change what happens, but you can change your response. z You can learn to think differently by changing your unhelpful thoughts into helpful ones. z Thinking differently makes you feel better. Let’s review what you have learned in this lesson iS u p p o rt In te rv e n ti o n M an u al 104 8 Tell Max she cannot help him search now and leave. This is bad advice. Max has dementia and is feeling worried. He could be very upset if Jo leaves the house right now. 8 Search for the keys until she finds them. This could be helpful. Max might feel safer if he has the keys. However, this may mean Jo misses meeting her friend and is left feeling miserable. 8 Tell Max that he should be more careful not to lose his keys in the future. This is not such good advice. Max has dementia, he cannot help misplacing things. What do you think Jo should do? 9 ✓Think to herself, “Max has dementia and is sometimes worried when he loses things. I can take some time to help and then go.” Then call her friend and explain that she will come later. This is good advice. It is not the fact that Max has lost the keys that is making Jo miserable, but her concern that she always needs to help Max and cannot leave him alone anymore. After Jo has called her friend, she can help Max search for the keys, which will make him feel safer. Then she can go to see her friend. 1. Check your understanding Feelings and thoughts. ANSWERS - CARING FOR ME Lesson 3. Thinking differently AN SW ER S - C AR IN G FO R M E • L es so n 3 iS u p p o rt In te rv e n ti o n M an u al 105 9 Making time for myself helps me to provide better care. This is a helpful thought. No one should feel guilty when taking time for themselves. It might help the carer to continue providing care in the long term. 8 I am a bad carer if my family member is not always happy. This thought will make Aryan feel unhappy and sad. The mood of the person living with dementia does not depend solely on the carer. For example, mood can also be related to dementia, depression, functional ability or personality. 8 Maybe the person living with dementia will get better. This thought may make Aryan feel disappointed as people with dementia continue to decline. There are many diseases that cause dementia. Unfortunately, there is no cure for any of these diseases yet. 9 Dementia is a disease, it is not my or anyone else’s fault. This thought is helpful and might prevent feelings of guilt. ✓ Which of Aryan’s thoughts may help make her feel better? 8 No one understands how hard it is to care. This thought may make Aryan feel upset, isolated and lonely. There might be people who do not understand how hard it is to care. However, talking to other people may help them better understand what dementia is and help you to take some pressure off. 8 No one can provide the care the way I do. This thought could make Aryan feel lonely, isolated and under a lot of pressure. Although others may provide care in a different way, that does not mean that it is always of a lower standard. It is important to involve others in caring for a person living with dementia, to avoid getting overwhelmed. 9 ✓Asking others for help can help me to share care duties. This is a helpful thought that may make Aryan feel more in control. Involving other people in caregiving has lots of potential benefits. For instance, the carer will be able to take breaks more regularly and provide care for a longer time. AN SW ER S - C AR IN G FO R M E • L es so n 3 2. Check your understanding Thoughts that can make you feel better. iS u p p o rt In te rv e n ti o n M an u al 106 Xavier thought, “if Gabriel thinks that I need help, he must think I am a bad carer.” How do you think Xavier is feeling? This is an unhelpful thought that may make Xavier feel: 9 upset 9 lonely 9 sad 9 angry 9 guilty Xavier thought, “if Gabriel thinks I need help, he must care about my father and want to make sure that we are doing well”. How does Xavier feel now? This is a helpful thought that may make Xavier feel happy or supported. AN SW ER S - C AR IN G FO R M E • L es so n 3 3. Check your understanding How thoughts influence our feelings. 4. Check your understanding Matching feelings to a helpful thought. M od ul e 4 . P ro vid in g ev er yd ay ca re PROVIDING EVERYDAY CARE Lesson 1. Eating and drinking - more pleasant mealtimes Lesson 2. Eating and drinking - preventing health problems Lesson 3. Toileting and continence care Lesson 4. Personal care Lesson 5. An enjoyable day 4 MODULE iS u p p o rt In te rv e n ti o n M an u al 108 1. Making mealtimes more pleasant Engaging people with dementia in simple tasks around mealtime helps to make the most of people’s skills, promote feelings of self-worth, and enjoy the mealtime. Why is this lesson important? Dementia can affect eating and drinking in various ways depending on the stage of dementia and other health conditions. How will this lesson help me? By learning how to help create more pleasant mealtimes and prevent dehydration. What will I learn? 1. Making mealtimes more pleasant. 2. Promoting a good mealtime atmosphere. 3. Health conditions that affect eating and drinking. 4. Preventing dehydration. MODULE 4 Le ss on 1 . E at in g an d dr in ki ng - m or e p lea sa nt m ea lti m es Lesson 1. Eating and drinking - more pleasant mealtimes iS u p p o rt In te rv e n ti o n M an u al 109 Let’s look at an example MODULE 4 Le ss on 1 . E at in g an d dr in ki ng - m or e p lea sa nt m ea lti m es How would you advise Siya’s family to deal with this situation? Please select the answer that you think is correct from the list. „ Bring Siya’s dinner to her room. „ Demand that Siya joins them for dinner. „ Let Siya help with meal preparation and cleaning activities. 1. Check your understanding Making mealtimes more pleasant. Siya was a housewife and cooked every day for her family for many years. Recently, she lost her husband and now lives with one of her sons. Adi, her daughter-in-law, provides all the cooking in the new household. Siya has been very sad in her new home and says she’s not hungry when she is offered food. She does not join the family for dinner. iS u p p o rt In te rv e n ti o n M an u al 110 Mealtime activities Please select all activities from the list below that you think the person you care for can still engage in and would enjoy. Now, try to think about involving the person that you care for around mealtimes. Mealtime activities Example Washing or drying dishes Shopping together Meal preparation Preparation of the table Cleaning the table „ Let the person living with dementia choose what food and drinks they like to buy for breakfast, lunch and dinner. „ Let the person living with dementia help chopping, stirring, or cooking. „ Let the person living with dementia lay the table for breakfast, lunch and dinner. „ Let the person living with dementia remove everything from the dining table and wipe the table. „ Let the person living with dementia put dishes in the sink or wash and dry the dishes. 1. Activity MODULE 4 Le ss on 1 . E at in g an d dr in ki ng - m or e p lea sa nt m ea lti m es If you think that the person you care for can still engage in and would enjoy any of the listed activities, perhaps you could ask or assist them in trying these activities the next time you have a meal. iS u p p o rt In te rv e n ti o n M an u al 111 2. Promoting a good mealtime atmosphere Mealtime is a good opportunity for carers to show their care and support for the person living with dementia. An enjoyable mealtime atmosphere may help encourage them to eat and drink. Let’s look at an example again. Spilling food Shang has Alzheimer’s disease and lives with his oldest son since his wife passed away a year ago. The family now has four generations who eat together at the table. Shang sees the mealtime as the best time of the day. Recently, Shang’s hands have started to tremble and he often spills or drops food on the table and the floor. How would you advise Shang’s son to deal with this situation? Please check the responses that you feel are appropriate. „ Buy adaptive eating and drinking aids from the shop for Shang. „ Set up a separate table for his father to eat in his own bedroom, because spilling and dropping food may make the family irritated. „ Organize a family meeting to ask all family members to think of more positive and constructive ways to respond to the situation at mealtimes. 2. Check your understanding Promoting a good mealtime atmosphere. MODULE 4 Le ss on 1 . E at in g an d dr in ki ng - m or e p lea sa nt m ea lti m es iS u p p o rt In te rv e n ti o n M an u al 112 Health condition Changes that you may have observed Recommended actions you may try Poor appetite Toothache Poorly fitting artificial dentures „ Does not want to eat the meal „ Eats only small amounts of food „ Takes a long time to eat a small amount of food „ Refuses to eat and drink „ Is restless „ Has a facial expression indicating pain „ Refuses to eat and drink „ Is restless „ Has a facial expression indicating pain „ Refuses to wear dentures „ Throws dentures on the floor z Make food appealing: use different textures, flavours, smells, tastes, sounds and colours that the person enjoys z Eat with the family, rather than alone z Play soft music that they like during mealtime z Increase physical activities that they can do during the day z Ask whether the person is in pain z Ask them to point out the area of pain z Check whether there are loose teeth, mouth ulcers, etc. z Seek help from a doctor or dentist z See above for toothache z Check that the dentures are in good condition and fit properly Health conditions Common health conditions can affect eating and drinking. The activity below teaches you how to improve these conditions, if they are present. 2. Activity Le ss on 1 . E at in g an d dr in ki ng - m or e p lea sa nt m ea lti m es MODULE 4 iS u p p o rt In te rv e n ti o n M an u al 113 Diarrhoea Side effects from medications Does not have bowel movement for more than 7 days „ Liquid faeces „ Increased number of bowel movements „ Incontinency and difficulty controlling bowel movements „ Nausea, vomiting, liquid faeces or constipation „ Does not want to have a meal „ Eats only small amounts of food „ Hard and dry faeces „ Difficulty passing faeces/straining „ Having a feeling of incomplete bowel movements „ Becomes anxious or agitated „ Hard stomach „ Nausea and vomiting z Seek help from a doctor z Seek help from a doctor z Seek help from a doctor z Upon resolution of the problem: { Increase fibre in diet { Increase drinking of fluids { Increase physical activity Body pain „ Refuses to eat and drink „ Is restless „ Unusual body postures „ Has a facial expression of pain z Ask whether the person is in pain z Ask them to point out the area of pain z Seek help from a doctor Health condition Changes that you may have observed Recommended actions you may try 2. Activity Le ss on 1 . E at in g an d dr in ki ng - m or e p lea sa nt m ea lti m es MODULE 4 iS u p p o rt In te rv e n ti o n M an u al 114 Weight loss Weight gain Depression „ Forgets to eat „ Eats smaller amounts of food „ Eats regular amounts of food but still loses weight „ Eats all the food that is served „ Eats more snacks than before because they forget that they already ate „ Is obsessed with food „ Refuses to eat or says they are not hungry „ Eats small amounts of food „ Has no interest in food z Increase the amount of food z Provide foods that they will like z Increase flavourful foods as the person’s taste might be impaired z Seek advice from a doctor z Model eating and drinking z (i.e. eat and drink with the person) z Serve smaller portions z Remove the plate when the person indicates that they are full z Provide low calorie snacks z Seek help from a doctor Memory loss; forgets to eat or drink „ Asks when the next meal is even if it already happened „ The person says that they are hungry even if they already ate z Remind the person to eat and drink regularly z Model eating and drinking (i.e. eat and drink with the person) z Provide snacks between meal times Health condition Changes that you may have observed Recommended actions you may try 2. Activity Le ss on 1 . E at in g an d dr in ki ng - m or e p lea sa nt m ea lti m es MODULE 4 iS u p p o rt In te rv e n ti o n M an u al 115 4. Preventing dehydration People living with dementia have a higher risk of being dehydrated. There can be several reasons for this: z inability to explain their needs; z decreased thirst sensation; z not offered enough to drink; and, z swallowing problems in the late stage of dementia. The person you care for needs to be encouraged to drink 8-10 glasses (1500-2000 millilitres) of fluid (water, iced lollies, soup and juice, not including tea or coffee every day. Severe dehydration Ben has Alzheimer’s disease, but he is able to eat and drink without assistance from his wife, Mary. Ben likes to walk a lot. One hot afternoon, Mary also notices that Ben seems very tired, walks very slowly and then collapses on the floor. Ben is sent to the local hospital’s Emergency Department and is diagnosed with dehydration. After treatment in the hospital, Ben has recovered and is able to go home again. How would you advise Mary to deal with the situation after Ben is discharged home? Please select all the responses that you feel are appropriate. „ Mary needs to let Ben make the decision about when to drink. „ Mary needs to ensure that Ben drinks 8-10 glasses of water during the day. „ Mary records the time and the amount of fluid Ben actually consumes. 3. Check your understanding Severe dehydration. MODULE 4 Le ss on 1 . E at in g an d dr in ki ng - m or e p lea sa nt m ea lti m es iS u p p o rt In te rv e n ti o n M an u al 116 Timetable for eating and drinking The timetable below is for you to remind the person living with dementia to eat and drink. Give them the opportunity to choose what to drink. Time of day Type of fluid (e.g. water) Amount of fluid (e.g. 3 glasses) Morning - Noon Noon - Dinnertime Dinnertime - Bedtime 3. Activity WARNING! If the person you care for is not allowed fluids due to a heart condition, you need to follow the doctor’s order regarding how much to drink. MODULE 4 Le ss on 1 . E at in g an d dr in ki ng - m or e p lea sa nt m ea lti m es iS u p p o rt In te rv e n ti o n M an u al 117 Let’s review what you have learned z The person you care for needs to be encouraged and supported to eat and drink. z You can engage the person you care for in a variety of mealtime activities to create a pleasant mealtime for them, which helps to improve self-worth and a feeling of achievement. z Eating and drinking can be facilitated by modifying food, utensils and the environment. z You can maintain good eating and drinking for the person you care for by improving their health condition. Seeking assistance from health professionals might be necessary. z To help prevent dehydration, it is important to prompt the person living with dementia to drink. z Record and monitor the amount of fluid they consume. MODULE 4 Le ss on 1 . E at in g an d dr in ki ng - m or e p lea sa nt m ea lti m es You finished this lesson, well done! iS u p p o rt In te rv e n ti o n M an u al 118 iS u p p o rt In te rv e n ti o n M an u al How could Siya’s family deal with the situation? 8 Bring Siya dinner in her room. This is not helpful because it might further isolate Siya from her family. Siya may not feel welcome in the new home. She has lost her husband, her own home and now also her previous roles as cook and housekeeper. 8 Demand that Siya joins them for dinner. This is not such a good response because it may make Siya angry or cause her to further withdraw. 9 Siya’s family should let her help with the meal preparation and cleaning activities. This is a good response because her family knows Siya still enjoys cooking and should therefore support her to continue engaging in the activities that she likes and is still able to do. AN SW ER S - P RO VI DI NG E VE RY DA Y CA RE • Le ss on 1 1. Check your understanding Making mealtimes more pleasant. ANSWERS - PROVIDING EVERYDAY CARE Lesson 1. Eating and drinking - more pleasant mealtimes iS u p p o rt In te rv e n ti o n M an u al 119 iS u p p o rt In te rv e n ti o n M an u al 9 Buy adaptive eating and drinking aids from the shop for Shang. This is a good response because Shang’s son recognises that his father is no longer able to manage eating and drinking using the usual utensils. By providing other utensils he is trying to solve this problem. 8 Set up a separate table for his father to eat in his own bedroom, because spilling and dropping food may make the family irritated. This is not helpful because separation will make Shang feel sad or angry, which might prevent him from eating and drinking properly. 9 Organise a family meeting to ask all family members to think of more positive and constructive ways to respond to the situation at mealtimes. This is a good response because Shang’s son is trying to provide a positive mealtime atmosphere for everyone. 2. Check your understanding Promoting a good mealtime atmosphere. How could Shang’s son deal with the situation? AN SW ER S - P RO VI DI NG E VE RY DA Y CA RE • Le ss on 1 iS u p p o rt In te rv e n ti o n M an u al 120 iS u p p o rt In te rv e n ti o n M an u al How could Mary deal with this situation after Ben is discharged home? 8 Mary needs to let Ben make the decision about when to drink. This answer is not so good even though she is respecting Ben’s autonomy. Since people with dementia have decreased thirst sensation, it could be dangerous to leave it up to them whether to drink or not without reminding them. If not reminded, Ben may get dehydrated again and collapse. 9 Mary needs to ensure that Ben drinks 8-10 glasses of water during the day. This is a good response. Mary notices that Ben may forget to drink, so she is trying to help her husband drink enough water every day. 9 Mary records the time and the amount of fluid Ben actually consumes. This is a good response. It can be helpful to establish a routine and record the number of glasses Ben drinks from breakfast time to dinner time. Drinking after dinner time may potentially increase night time visits to the bathroom. 3. Check your understanding Severe dehydration. AN SW ER S - P RO VI DI NG E VE RY DA Y CA RE • Le ss on 1 iS u p p o rt In te rv e n ti o n M an u al 121 1. Improve eating and prevent weight loss In the late stages of dementia, a person living with dementia may experience difficulty chewing and swallowing. Reduced abilities to smell, taste and see may also happen due to ageing and dementia. These can have a negative impact on the person’s health. Depression and changes in eating patterns may also impair eating and digestion. Let’s look at an example Chiu has been living with dementia for 9 years and is cared for by her daughter, Ling. Recently, Ling notices that her mother sleeps during the day and is very difficult to wake and assist with her meals during the normal mealtimes. Ling believes that her mother is not hungry and does not want to disturb her sleep. A recent check-up showed that Chiu has lost 2.5 kg since the last check-up 5 weeks ago (5% of her body weight). Why is this lesson important? Dementia can affect eating and drinking in various ways depending on the stage of dementia and other health conditions. How will this lesson help me? By learning how to improve eating and drinking, prevent weight loss and promote drinking and eating safely. What will I learn? 1. Improve eating and prevent weight loss. 2. Help the person you care for to eat safely and prevent aspiration pneumonia. MODULE 4 Le ss on 2 . E at in g, d rin ki ng a nd p re ve nt in g he al th p ro bl em s Lesson 2. Eating, drinking and preventing health problems iS u p p o rt In te rv e n ti o n M an u al 122 What would you advise Ling to do to improve Chiu’s eating? Please select all the responses that you feel are appropriate. „ Be flexible to have meals when her mother is awake. „ In a diary, keep a record of what and how often her mother eats. „ Ensure Chiu has access to foods she enjoys eating. 2. Help the person you care for to eat safely and prevent aspiration pneumonia People with dementia may experience the problems listed below. z People with dementia may not be able to judge what can or cannot be eaten. They may eat inedible materials that are within reach when feeling hungry. Make sure to keep inedible materials and chemicals in safe places. z If the person is in the late stages of dementia, they may experience swallowing difficulties that can cause a lung infection called aspiration pneumonia. Aspiration pneumonia occurs when food is swallowed in the wrong way and goes into the person’s lungs instead of their stomach. This can then cause an infection. Eating, drinking and feeding methods may need to be modified to prevent this life-threatening problem. 1. Check your understanding How to improve eating and prevent weight loss. MODULE 4 Le ss on 2 . E at in g, d rin ki ng a nd p re ve nt in g he al th p ro bl em s iS u p p o rt In te rv e n ti o n M an u al 123 What do you think Ella should do? Please select all the responses that you feel are appropriate. „ Recognize that she needs to lock household chemicals, such as dishwashing soap, in a cabinet. „ Leave some inedible household materials in the places Oliver is able to reach, because she thinks Oliver should be taught that those cannot be eaten. MODULE 4 Le ss on 2 . E at in g, d rin ki ng a nd p re ve nt in g he al th p ro bl em s 2. Check your understanding Inedible materials. Inedible materials Oliver has been living with dementia for 10 years and is cared for by his wife, Ella. Ella starts to observe her husband closely during the day. Recently, Ella notices that the soaps she put in the kitchen and bathroom have disappeared. She also notices that her husband is eating the flowers that she puts on the dining table. She sees Oliver go to the kitchen and mistakenly pick up a soy sauce bottle and even a bottle of dishwashing detergent to drink. iS u p p o rt In te rv e n ti o n M an u al 124 What do you think Wei should do? Please select all the responses that you feel are appropriate. „ Learn how to make healthy, soft foods and thickened drinks for Lu. „ Not pay attention to how Lu is sitting when he helps her eat. A healthy soft diet can be made by hand without using an electric blender. Thickened fluids can be made by adding corn flour to water or other fluids while heating and stirring it, until it thickens. Note: commercial stir-in thickeners are available in the supermarket in many countries. MODULE 4 Le ss on 2 . E at in g, d rin ki ng a nd p re ve nt in g he al th p ro bl em s 3. Check your understanding Helping a person to eat safely. Tip Helping a person to eat safely Lu has been living with dementia for 10 years and is bedridden. Her husband, Wei, helps her to eat safely. Recently, he found Lu has difficulty swallowing soft foods that he makes for her. He also notices that she coughs when she drinks something. She seems to have a high temperature and is admitted to the hospital. Lu is diagnosed with aspiration pneumonia. After a month of treatment in the hospital, Lu has recovered and is discharged home. The doctor orders a healthy, soft diet and thickened drinks for Lu to consume at home to prevent future aspiration pneumonia. iS u p p o rt In te rv e n ti o n M an u al 125 You finished this lesson, well done! MODULE 4 Le ss on 2 . E at in g, d rin ki ng a nd p re ve nt in g he al th p ro bl em s Let’s review what you have learned z You can modify eating patterns for the person you care for to improve nutrition. z You can help the person living with dementia to eat and drink safely by keeping inedible materials and household chemicals in a safe place. z You can help prevent aspiration pneumonia by modifying the foods and drinks that they eat and positioning the person you care for in an upright position when helping them eat. iS u p p o rt In te rv e n ti o n M an u al 126 iS u p p o rt In te rv e n ti o n M an u al What would you advise Ling to do to improve Chiu’s eating? 9 Be flexible to have meals when her mother is awake. This is a good response. People in late stages of dementia need rest, so flexibility in planning meals will be very helpful when they are sleeping during normal mealtimes. 9 Keep a record of what and how often her mother eats in a diary. This is a good response. Recording what people with dementia eat is important. This way, carers will better understand when and what kind of food is needed for sufficient food intake. 9 Ensure Chiu has access to foods that she enjoys eating. This is a good response. What foods did she enjoy eating before her diagnosis of dementia? What foods does she seem to enjoy now? 1. Check your understanding How to improve eating and prevent weight loss. ANSWERS - PROVIDING EVERYDAY CARE Lesson 2. Eating, drinking and preventing health problems MODULE 4 AN SW ER S - P RO VI DI NG E VE RY DA Y CA RE • Le ss on 2 iS u p p o rt In te rv e n ti o n M an u al 127 iS u p p o rt In te rv e n ti o n M an u al What do you think Ella should do? 9 Recognize that she needs to lock household chemicals, such as dishwashing soap, in a cabinet. This is a good response. Keeping these dangerous things away will help protect the person living with dementia. 8 ✗Leave some inedible household materials in the places Oliver is able to reach because she thinks that Oliver should be taught that those cannot be eaten. This is not a good response. People in late stages of dementia can have a changed judgement of what they can or cannot eat. Keeping these dangerous things away from them is very important. How can Wei help Lu? 9 Learn how to make healthy, soft food and thickened drinks for Lu. This is a good response. Providing healthy, soft food and thickened drinks will make it easier for people in the late stage of dementia to continue to eat and drink on their own and maintain a healthy weight. 8 ✗Not pay attention to how Lu is sitting when they are helping her eat. This is not a good response. They should sit Lu in an upright position which will help her eat and drink better and prevent aspiration pneumonia. 2. Check your understanding Inedible materials. 3. Check your understanding Helping a person to eat safely. MODULE 4 AN SW ER S - E AT IN G, D RI NK IN G AN D PR EV EN TI NG H EA LT H PR OB LE M S • L es so n 2 iS u p p o rt In te rv e n ti o n M an u al 128 1. Possible solutions for problems such as urinating on the floor or losing bladder control Urinating on the floor Dementia can affect a person’s ability to find their way to the bathroom and identify the toilet and/or toilet seat. You should not blame the person living with dementia for this behaviour, nor punish them as this type of response will cause them and yourself stress. Modifying your house may help them use the bathroom. Why is this lesson important? Poor toileting and incontinence may lead to infections and other health problems, low self-esteem and withdrawal from social activities for a person living with dementia. How will this lesson help me? This lesson will help you think about the health concerns, and assist the person you care for with using the toilet and continence. What will I learn? 1. Possible solutions for problems such as urinating on the floor or losing bladder control. 2. Using incontinence aids and equipment. MODULE 4 Le ss on 3 . T oi let in g an d co nt in en ce ca re Lesson 3. Toileting and continence care iS u p p o rt In te rv e n ti o n M an u al 129 Zhen is taking care of her husband, Fu, since he developed vascular dementia several years ago. Fu is able to go to the toilet himself without assistance, but recently, Zhen finds Fu urinating on the floor outside the toilet. Let’s look at an example Below are some tips in case the person you care for experiences difficulties using the toilet. z Put an image of a toilet on the toilet door to help them find it. z Provide directions to the toilet if they are unable to find it. z Provide adequate nightlights in the hallway between the bedroom and the toilet. z Use contrasting colours for the toilet seat. z Change the person’s trousers to some that are easier to remove. z Provide step-by-step instructions to the person if they forget how to use the toilet. What do you think is the right response for Zhen? Please select the correct answer. „ Make some simple changes to the environment and clothing, such as putting an image of a toilet on the bathroom door, using a contrasting colour for the toilet seat or changing Fu’s trousers to a pair of pants that does not need a belt. „ Tell her husband, Fu, that he is making trouble and punish him by not taking him for his daily walk in their neighbourhood. 1. Check your understanding Prevent urinating on the floor. Tip MODULE 4 Le ss on 3 . T oi let in g an d co nt in en ce ca re iS u p p o rt In te rv e n ti o n M an u al 130 Contributing factors Recommended solutions A long distance to go to the toilet in the house Public toilet that is at a distance from the house Not being able to find the toilet Not enough colour contrast of the toilet seat Not enough lighting in the hallway Not enough lighting in the toilet z Direct the person you care for to the toilet z Provide a bedside commode at night z Use nightlights in the bedroom and the house z Provide a commode for them to use in the house z Put a picture of a toilet on the toilet door z Replace the toilet seat with a different colour to increase the contrast z Provide adequate lighting in the hallway z Provide adequate lighting in the toilet What other factors may contribute to urinating on the floor or losing bladder control? Le ss on 3 . T oi let in g an d co nt in en ce ca re iS u p p o rt In te rv e n ti o n M an u al 131 Contributing factors Recommended solutions Narrow toilet doors that do not allow the walker or wheelchair to pass Visual impairment Unable to undo trousers Forgetting what to do in the toilet z Modify the door opening to allow a walker or wheelchair to pass z Direct the person you care for to the toilet during the day z Provide a bedside commode at night z Change trousers to ones that are easily undone and removed z Assist the person you care for to pull on and do up trousers z Remind the person you care for of the activities they need to do z Provide step-by-step instructions for them to use the toilet Le ss on 3 . T oi let in g an d co nt in en ce ca re iS u p p o rt In te rv e n ti o n M an u al 132 What do you think is the right response for Joshua? Please select the correct answer. „ Since this is an embarrassing situation for Joshua, he should stop taking his mother shopping. „ Joshua should try to make sure that his mother uses the toilet before leaving to go shopping. MODULE 4 Le ss on 3 . T oi let in g an d co nt in en ce ca re 2. Check your understanding Dealing with losing bladder control. Urinating in public places Dementia affects the person’s ability to explain their needs, for example needing to go to the bathroom. Additionally, dementia can affect a person’s judgement of what is normal or not in public. You could help prevent these accidents (incontinence) by maintaining a regular, daily schedule to assist the person you care for to go to the toilet. Identifying how often they used the toilet before they had dementia might be helpful. You can also identify whether the person you care for needs to go to the bathroom by the way they behave, e.g. if they become agitated, stressed, anxious or restless. Let’s look at an example Joshua is taking care of his mother Esther, who received a diagnosis of dementia 5 years ago. Joshua usually takes his mother shopping in the neighbourhood as she enjoys meeting people. Recently, Joshua notices that his mother has lost bladder control during the day. iS u p p o rt In te rv e n ti o n M an u al 133 06:00-09:00 09:00-12:00 12:00-15:00 15:00-18:00 18:00-21:00 21:00-00:00 0:00-03:00 03:00-06:00 Time Number of trips to the toilet Number of times lost control of bladder or bowel What possible causes did you observe? Toilet use diary Date: To improve bladder or bowel control, it may help to fill out a toilet diary. Le ss on 3 . T oi let in g an d co nt in en ce ca re iS u p p o rt In te rv e n ti o n M an u al 134 There are numerous disposable and/or washable incontinence aids, pads and equipment. When selecting products, you should consider their cost, effectiveness, comfort and convenience. For bedridden males, using urinals to collect urine may help. Some of these urinals are designed to prevent the backward leaking of urine. In the late stages of dementia, the person living with dementia may not be able to control their bladder and bowel movements. Before using any incontinence aids and equipment, you should ask a health professional to help identify the cause(s) of incontinence, as these may be treatable and therefore reversible. Tip MODULE 4 Le ss on 3 . T oi let in g an d co nt in en ce ca re 2. Using incontinence aids and equipment iS u p p o rt In te rv e n ti o n M an u al 135 Let’s look at an example Gloria is in a late stage of Alzheimer’s disease and is living with her son’s family. Her daughter-in-law, Marina, is taking care of her. Since Gloria cannot control her bladder or bowel movement, the doctor suggests that Marina try incontinence pads for Gloria. In the beginning, Marina encounters a number of problems: z Gloria constantly takes the pad off and throws it on the floor. z Gloria still has wet pants even when using incontinence pads. z Gloria has skin problems in her genital area. MODULE 4 Le ss on 3 . T oi let in g an d co nt in en ce ca re 3. Check your understanding Use of personal hygiene products. What do you think is the right response for Gloria? Please select the correct answer. „ Marina should force Gloria to wear the pad. „ Marina should remind her mother-in-law to use the bathroom at scheduled times if she is not doing so herself. iS u p p o rt In te rv e n ti o n M an u al 136 Tip Constantly taking the pad off and throwing it on the floor Still having wet pants even while using the incontinence pads Having sore or irritated skin in the genital area Having fever, being in pain, strong smelling urine z Feeling uncomfortable with the pad z The pad size is wrong z The pad is wet and needs to be changed z Check whether the pad size is correct z Change the wet pad on time z Consult the doctor regarding the person’s behaviour z Use the right size and type of pad z Maintain scheduled trips to the toilet to minimize the use of pads z Select suitable pad size and type z Change the soiled pad on time and maintain hygiene around genital area z Apply protective creams or lotions that maintain healthy skin z See the doctor z Maintain an intake of 6-8 glasses of water or juice per day except if the person is under fluid or dietary restriction z Maintain good genital care z The pad size is incorrect z The schedule for using the toilet has not been maintained z Incontinence pads can cause skin breakdown z Unsuitable pad size and delaying changes of soiled pads in a timely manner can cause skin infection z Urinary tract infections are triggered by a number of factors, including incontinence and poor genital care Below are some tips for incontinence care. Problems Possible causes Recommended solutions Le ss on 3 . T oi let in g an d co nt in en ce ca re iS u p p o rt In te rv e n ti o n M an u al 137 Let’s review what you have learned z Do not blame the person after any accidents, such as urinating on the floor. z Modify the environment to reduce the chance of bladder and bowel accidents (for example, put a picture of a toilet on the bathroom door). z Take the person living with dementia to the toilet regularly to reduce accidents. z The frequency of toilet visits will need to be established based on the toilet pattern that the person living with dementia had before the onset of dementia. z If these changes do not help, incontinence aids and equipment may help. z Be aware that the use of incontinence aids can irritate the skin if used incorrectly. z Maintain good genital care to reduce the risk of a urinary tract infection. z If the person living with dementia is not under fluid restriction, encourage them to drink 6-8 glasses of water or juice per day to help prevent urinary tract infections. MODULE 4 Le ss on 3 . T oi let in g an d co nt in en ce ca re You finished this lesson, well done! For more tips on how to stay in control of your feelings please refer back to Lesson 3.Thinking differently in Module 3. Tip iS u p p o rt In te rv e n ti o n M an u al 138 iS u p p o rt In te rv e n ti o n M an u al 9 Make some simple changes to the environment and clothing, such as putting an image of a toilet on the bathroom door, using a contrasting colour for the toilet seat or changing Fu’s trousers to a pair of pants that doesn’t need a belt. This is the best answer. People with dementia may have difficulties finding and using the toilet, so these changes could help Fu. What do you think is the right response for Zhen? 8 Tell her husband that he is making trouble and punish him by not taking him for his daily walk in their neighbourhood. This is not a good answer. You should never threaten people with dementia in this way. Fu will feel ashamed and embarrassed and this response could cause him to become upset. 1. Check your understanding Prevent urinating on the floor. ANSWERS - PROVIDING EVERYDAY CARE Lesson 3. Toileting and continence care MODULE 4 AN SW ER S - P RO VI DI NG E VE RY DA Y CA RE • Le ss on 3 iS u p p o rt In te rv e n ti o n M an u al 139 iS u p p o rt In te rv e n ti o n M an u al 8 ✗Since this is an embarrassing situation for Joshua, he should stop taking his mother shopping. This is not the best response because his mother will miss out on a very important pleasant activity. What do you think is the right response for Joshua? 9 Joshua should try to make sure that his mother uses the toilet before leaving to go shopping This is a good response. It is a good way to help prevent Esther from losing bladder control. 8 Marina should force Gloria to have the pad on. This is not the right answer! It’s very important to check why a person living with dementia may feel uncomfortable with the pad. Is the size wrong? Is the pad wet and does it need to be changed? What do you think is the right response for Marina? 9 Marina should remind her mother-in-law to use the toilet at scheduled times if she is not doing so herself. This is the best answer. Scheduled toilet visits may help minimise incontinence and the need for pads. 2. Check your understanding Dealing with losing bladder control. 3. Check your understanding Use of personal hygiene products. AN SW ER S - P RO VI DI NG E VE RY DA Y CA RE • Le ss on 3 iS u p p o rt In te rv e n ti o n M an u al 140 1. Modifying the environment to make personal care easier There are different reasons for not being able to perform personal care. One reason is that people with dementia may not find the things that they need for personal care. For example, when you cannot find your toothbrush and toothpaste due to memory loss, it will be difficult to brush your teeth. However, you can modify the environment to make it easier for them to find things that are needed for personal care. Why is this lesson important? Dementia affects people’s ability to maintain personal care, for example brushing teeth, showering/bathing and grooming. Therefore, assistance with maintaining good personal care is very important. Poor personal care may lead to infections and other health problems, low self-esteem and withdrawal from social activities for people with dementia. How will this lesson help me? This lesson will help you think about the health concerns of the person you care for and assist them with personal care. What will I learn? 1. Modifying the environment to make personal care easier. 2. Tips for daily dressing, oral care and assisting in bathing. MODULE 4 Le ss on 4 . P er so na l c ar e Lesson 4. Personal care iS u p p o rt In te rv e n ti o n M an u al 141 What would you think is the right response for Mohammed? Please select the correct answer. „ Put personal care items in the order of use and label them with large print words and different colours for Mariam to read. „ Ask their daughter-in-law to take Mariam from the table to the bathing room and assist her with washing and changing clothes. Let’s look at an example Mariam has Alzheimer’s disease, but she is able to care for herself without assistance from family members. Recently, her husband, Mohammed, notices that she sits at the table for breakfast in a nightgown without having washed her face, brushed her hair, or doing her make-up as she usually does. There may be several reasons why Mariam may not undertake personal care before breakfast anymore. One of them is that she may be depressed. For more information on depression please see Lesson 4. Depression, anxiety or apathy in Module 5. Below are some tips that may help people with dementia find items or places, and to do personal care activities independently. z To find the bathroom or toilet: put a picture or words on the bathroom door or direct the person to the bathroom. z To find personal care materials: make items easy to see in the bathroom, label items with their name, use pictures or words on the bathroom wall to point out items, use contrasting colours. z To help turn the tap on and off: use colour indicators to label the direction for turning the tap on and off, instruct the person to turn the tap on and turn off, assist if needed. MODULE 4 Le ss on 4 . P er so na l c ar e 1. Check your understanding Promoting personal hygiene. Tip iS u p p o rt In te rv e n ti o n M an u al 142 2. Tips for daily dressing, oral care and assisting in bathing Difficulties choosing the right clothes or dressing appropriately Dementia can affect the person’s ability to choose clothes and dress appropriately. You can assist the person you care for to choose clothes and to dress in a way that makes the most use of their remaining skills. You should not take over these tasks when the person living with dementia can still perform them. What would you think is the right response for Jane? Please select the correct answer. „ Tell Ted that he needs to be less messy, choose clothes for Ted and dress him. „ Remind Ted to lay out his clothes in the evening and encourage him to wear pants that do not need a belt and shoes that do not need laces. Let’s look at an example Ted has Alzheimer’s disease and is cared for by his wife Jane. Ted used to lay out his clothes for the next day in the evening. Recently, Jane found that Ted forgets to do this and is inclined to wear the same clothes every day. Jane also observes that Ted leaves some buttons of his shirt undone, his belt unbuckled and forgets to lace up his shoes. MODULE 4 Le ss on 4 . P er so na l c ar e 2. Check your understanding Getting dressed. iS u p p o rt In te rv e n ti o n M an u al 143 Difficulties brushing one’s teeth Dementia not only affects memory but also organization, coordination and concentration, which are required to perform mouth care. Poor mouth care is associated with poor appetite, bad breath, infections of the teeth or gums and other health problems. The goal of assisting with mouth care is to help the person make the most use of their remaining skills. What would you think is the right response for Lingling? Please select the correct answer. „ Put Guoliang’s dentures into his mouth without asking. „ Instruct her husband how to brush his teeth step-by-step and praise him when he is doing well. Let’s look at an example Guoliang has Alzheimer’s disease but is able to brush his teeth without assistance. Recently, Guoliang’s wife, Lingling notices that her husband makes a big mess in the bathroom with water and toothpaste on the countertop and the floor. She also observes that her husband is unable to brush his teeth in the order that he usually does and can’t insert his artificial dentures himself. MODULE 4 Le ss on 4 . P er so na l c ar e 3. Check your understanding Promoting mouth care. iS u p p o rt In te rv e n ti o n M an u al 144 Please select any mouth care steps that the person you care for needs help with from the list below. „ Putting toothpaste on the toothbrush „ Brushing teeth in an order that will clean teeth and gums „ Rinsing and cleaning mouth „ Using floss or toothpick to clean between teeth daily „ Applying balm to moisturize lips when needed „ Checking for signs of mouth infections or toothache when needed „ Removing, washing, cleaning, and storing artificial dentures if needed 1. Activity MODULE 4 Le ss on 4 . P er so na l c ar e iS u p p o rt In te rv e n ti o n M an u al 145 Difficulties performing personal care and bathing Dementia may also affect the person’s ability to wash their hair and take a shower or a bath. A person living with dementia may view assistance with personal care as a threat to his or her privacy, safety and security, and may refuse or resist any help. Let’s look at an example Feng has Alzheimer’s disease and is cared for by his wife Yuan. Due to her age, Yuan is not strong enough to help bathe Feng anymore, so the family decides that the three sons-in-law could take turns to help with Feng’s weekly bath. The oldest son-in-law is very kind to Feng and reassures him that he will make him comfortable during the bath. He takes Feng to the bathroom and starts to undress him. Feng suddenly pushes him away, shouts at him and tells him to go away. MODULE 4 Le ss on 4 . P er so na l c ar e 4. Check your understanding Resisting help with bathing. What would you think is the right response for Feng’s family? Please select the correct answer. „ Since the family notices that Feng thought his son-in- law was a stranger, Yuan decides to be with Feng while her son-in-law bathes him. „ They should say to Feng that he should be grateful for the help he receives and if he continues to behave this way, he will be sent to a long-term care facility. iS u p p o rt In te rv e n ti o n M an u al 146 People with dementia may show resistance during personal care, or even become aggressive like Feng in this example. To read more about how to prevent or deal with aggression, please refer to Lesson 3. Aggression in Module 5. Below are some tips for assisting with bathing. z Identify the times of day that the person you care for prefers to have a bath/shower. z Switch from a shower/bath to a sponge bath. (Note: bath tubs are particularly difficult as they may lead to falls and it may be hard for the carer to lift the person living with dementia out of the tub.) z If using the shower or bathtub, use a non-slip bath or shower mat to help prevent falls. z Adaptive seating or equipment, such as grab bars and shower chairs, may help. z For people with dementia who are afraid of water, try to reduce the water flow. Tip MODULE 4 Le ss on 4 . P er so na l c ar e When assisting with personal care, ask the person living with dementia for their preferences whenever possible and respect their choice. Reassure them that they are safe and comfortable. iS u p p o rt In te rv e n ti o n M an u al 147 Select any personal care activities that the person living with dementia needs help with. Coach them through the individual steps involved in each activity. „ Selecting daytime clothing „ Undressing before shower/bath „ Taking pyjamas off/on „ Shaving „ Washing and drying face „ Applying body lotion to moisturize skin „ Drying body after washing „ Combing hair „ Preparing for a shower/bath „ Putting on make-up „ Putting non-slip mats on the floor „ Washing hair/body during shower/bath „ Washing and drying hands „ Using towel to dry hair/body „ Washing and drying genital areas „ Dressing after shower/bath „ Washing and drying feet „ Checking for signs of skin problems „ Changing night clothing into daytime clothing „ Using electrical hairdryer „ Turning the tap on, adjusting the water temperature and preparing for bathing „ Cutting fingernails and toenails when needed MODULE 4 Le ss on 4 . P er so na l c ar e 2. Activity iS u p p o rt In te rv e n ti o n M an u al 148 Let’s review what you have learned z Engage the person living with dementia in personal and mouth care as long as possible, using remaining skills. z Modify the environment, for example by providing guidance, encouraging them to select different types of clothes or providing seating while performing personal care. z Engage the person you care for in daily decision making, for example what clothes they would like to wear. z Keep in mind that not have enough assistance with personal care may cause agitation or aggression. z Be compassionate and try to understand why they resist being assisted with personal care. You finished this lesson, well done! MODULE 4 Le ss on 4 . P er so na l c ar e iS u p p o rt In te rv e n ti o n M an u al 149 iS u p p o rt In te rv e n ti o n M an u al 9 Put personal care items in the order of use and label them with large print words and different colours for Mariam to read. This is a good response. People with dementia may lose the ability to find items that are not obvious. Creating an ‘easy to find’ environment for them is very important. What do you think is the right response for Mohammed? 8 Ask their daughter-in-law to take Mariam from the table to the bathing room and assist her with washing and changing clothes. This is not the right answer. Mohammed needs to first find out what the reason is for her not doing the personal care before breakfast anymore. Also, instead of assuming, Mohammed needs to ask his wife first if she wants help from their daughter-in- law. Not asking may upset her. ANSWERS - PROVIDING EVERYDAY CARE Lesson 4. Personal care MODULE 4 AN SW ER S - P RO VI DI NG E VE RY DA Y CA RE • Le ss on 4 1. Check your understanding Promoting personal hygiene. iS u p p o rt In te rv e n ti o n M an u al 150 iS u p p o rt In te rv e n ti o n M an u al What do you think is the right response for Jane? 8 Tell Ted that he needs to be less messy, choose clothes for Ted and dress him. This answer is not helpful. It is not Ted’s fault that he is finding this task challenging. With some extra help, Ted may still be able to dress himself. 9 Remind Ted to lay out his clothes in the evening and encourage him to wear pants that do not need a belt and shoes that do not need laces. You are right! It will enable Ted to dress himself, which may also help improve his sense of self-worth. 8 Put Guoliang’s dentures in his mouth without asking. This is not the right answer. Lingling is completely taking over care tasks and not even asking his permission. This response may upset Guoliang. 9 Instruct Guoliang how to brush his teeth in a step-by- step manner and praise him when he is doing well. This is the best answer. Guoliang maintains a level of independence in this way, which may also help to improve his sense of self-worth. MODULE 4 AN SW ER S - P RO VI DI NG E VE RY DA Y CA RE • Le ss on 4 2. Check your understanding Getting dressed. 3. Check your understanding Promoting mouth care. What do you think is the right response for Lingling? iS u p p o rt In te rv e n ti o n M an u al 151 iS u p p o rt In te rv e n ti o n M an u al 9 Since the family notices that Feng thinks that his son-in-law is a stranger, Yuan decides to be with Feng while her son-in-law bathes him. Good advice! A person living with dementia may no longer recognize people they used to know, so giving them plenty of transition time to get familiar with people is very important. MODULE 4 AN SW ER S - P RO VI DI NG E VE RY DA Y CA RE • Le ss on 4 4. Check your understanding Resisting help with bathing. 8 They should say to Feng that he should be grateful for the help that he receives and if he continues to behave in this way, he will be sent to a long-term care facility. This is bad advice. Never threaten people with dementia in this way. Saying things like this will not help the situation and will make Feng feel very distressed. What do you think is the right response for Feng’s family? iS u p p o rt In te rv e n ti o n M an u al 152 1. Establishing routines for the person with dementia during the day When someone is living with dementia, it is important to create an environment that supports them to do the things that they like to do. This is also true for you. It is important to try and maintain routines and activities that are familiar to the person living with dementia, and to adapt them as their abilities change. Why is this lesson important? It is important to maintain routines and activities that are familiar to a person living with dementia to help create an enjoyable day. How will this lesson help me? By learning how to adapt routines and activities as the abilities of the person living with dementia change. What will I learn? 1. Establishing routines for the person with dementia during the day. 2. Adapting routines to the changing abilities of the person you care for. Lesson 5. An enjoyable day MODULE 4 Le ss on 5 . A n en jo ya bl e d ay iS u p p o rt In te rv e n ti o n M an u al 153 What is a routine? A routine is something that a person does every day or almost every day. It is important to try and continue the routine of the person living with dementia for as long as possible. This is reassuring and can reduce stress at home. Be aware of the person’s usual routine. If there has not been a routine, for example in the evening, then it is helpful to develop one and follow it regularly. This might include drinking a cup of tea, listening to soothing music, or saying prayers. It is helpful to have routines for other times of the day as well, such as immediately after getting up from bed in the morning, when having the midday meal or planning what to do in the afternoon. The simpler and easier these routines are to follow, the more likely they will reassure the person living with dementia and reduce stress at home. Morning time: starting the day It’s helpful to have a set time for waking up and then several things to do in sequence to get the day started. Think of bathing, brushing one’s teeth, getting dressed and then sitting down for breakfast. As dementia progresses, the person you care for will need help with each of these activities but one way to lower stress is to keep the basic routines as similar as possible. During the day, it’s also important to try and make time for activities that the person living with dementia enjoys, such as visiting a friend or another family member, going for a walk, reading, playing games, or listening to the radio. These activities will depend on the person’s prior interests and current abilities. In the early stages of dementia, your family member or friend may be able to do things that they like to do with minimal guidance. However, as the disease progresses, activities will need to be changed or modified so that they can still enjoy them. It’s important to be flexible and creative in figuring out the routines and then adapting them as needed over time. MODULE 4 Le ss on 5 . A n en jo ya bl e d ay iS u p p o rt In te rv e n ti o n M an u al 154 What suggestions do you have for Penny? Please select the correct answer from the responses below. „ If Penny suggests keeping to the routine by drinking tea first, it is likely that Martha will go for a walk afterwards. „ Penny should ask Martha what activities she is used to and in what order she would like to do them. „ Penny should force Martha to go for a walk because it was advised by the doctor. It is important to keep routines (something the person living with dementia does every day or almost every day) for as long as possible. This may help to avoid confusion, agitation, restlessness and boredom. It also helps to honour the person’s dignity. Think for a moment about how you might feel if your routines were changed or planned by another person. MODULE 4 Le ss on 5 . A n en jo ya bl e d ay 1. Check your understanding Morning routines. Keep in Mind Let’s look at an example Martha has dementia and is used to drinking tea immediately after getting ready in the morning. Her daughter Penny really wants to encourage her mother to walk every day, as recommended by her doctor. Penny is not aware of her mother’s usual routine, so when she tries to get Martha to go for a walk right after breakfast, Martha refuses. iS u p p o rt In te rv e n ti o n M an u al 155 z It is important to develop routines for morning activities and maintain them as long as possible. z Make adjustments as needed when the abilities of the person living with dementia change. 2. Adapting routines to the changing abilities of the person you care for It is important to adapt routines as the abilities of the person living with dementia change. Here are some common routines to establish during the day for a person living with dementia. In the morning Wake up at the same time every day z Adaptation: help might be needed to wake up because the person with dementia may not be able to set the alarm correctly. Have breakfast at a fixed time. In the earlier stages of dementia, your family member or friend might be able to make their own breakfast. z Adaptation: the person with dementia may need someone to lay out ingredients. Later on, they may need more help with preparing and eating breakfast. Performing grooming activities, such as brushing teeth, bathing/ cleaning, getting dressed. In the early stages, the person you care for may be able to do all of these activities without help. z Adaptation: items such as the toothbrush, toothpaste, etc. can be laid out in the bathroom in plain view to prompt the activity. In the later stages of dementia, it may be necessary for someone to do these activities for, or with, the person living with dementia. For more tips, please refer back to Lesson 4. Personal care in this module. MODULE 4 Le ss on 5 . A n en jo ya bl e d ay Keep in Mind iS u p p o rt In te rv e n ti o n M an u al 156 MODULE 4 Le ss on 5 . A n en jo ya bl e d ay What suggestions do you have for Penny? Please select the correct answer from the responses below. „ Penny should put away the baking and cooking pans and tell her mother that it’s just not possible to do this anymore. „ Penny should go shopping with her mother and buy easy to prepare cakes and cookies, “out of the box”, with limited added work to enable Martha to continue to do some cooking and baking. „ As Martha’s abilities change, Penny could plan some time during the afternoon to bake and cook with her mother. 2. Check your understanding Maintaining prior activities and interests during the day. Let’s look at an example Martha loves baking and used to prepare special cakes and cookies for family gatherings. Now that she has dementia, she sometimes forgets the ingredients and the order in which to put them in. At first, Martha uses a cookbook to help her continue baking but she finds this increasingly difficult. The cakes and cookies do not taste very good and have to be thrown away. Penny wants to help her mother keep up this activity. During the day It is helpful to plan activities that the person you care for enjoys doing, based on their prior interests and current abilities. iS u p p o rt In te rv e n ti o n M an u al 157 What suggestions do you have for Penny? Please select the correct answer from the responses below. „ Penny could ask another family member to help Martha. „ Penny could ask other people outside the family to walk with Martha to the community centre, such as a neighbour. „ Penny could tell her mother to do a quiet activity in the afternoons such as watching television or listening to the radio. It is important to respect the daily routines of the person you care for and maintain them for as long as possible. When this is no longer possible, adapt the routine to the best of your ability so that the key activities that are important to the person with dementia are maintained for as long as possible. MODULE 4 Le ss on 5 . A n en jo ya bl e d ay 3. Check your understanding Maintaining activities and interests outside the house. Keep in Mind What is sundowning? Sometimes people with dementia become more agitated, aggressive or confused in the late afternoon or early evening. This is often referred to as ‘sundowning’. It can be particularly distressing for carers. The exact cause of sundowning is not yet clear but a loss of routine might be one of the reasons. Try to give the person something meaningful to do at this time of day. Let’s look at an example Martha likes to go to a community centre every day from 12:00 until 15:00. She has lunch there and meets friends to do activities together. At first Martha walks there by herself but as her memory loss becomes more severe, she cannot find her way to the centre anymore. Penny asks another family member to take Martha to the centre and bring her back home. This works well for a while but eventually the family member is unable to take Martha. Penny does not know what to do since she cannot be with Martha every afternoon. iS u p p o rt In te rv e n ti o n M an u al 158 At bedtime z For the morning, afternoon and bedtime, establish and maintain routines for as long as possible, but be prepared to adapt these as the abilities of the person living with dementia change over time. z Printing out a list of daily routines can help. Do one for each day and put it up in a prominent place. MODULE 4 Le ss on 5 . A n en jo ya bl e d ay What suggestions do you have for Penny? Please select the correct answer from the responses below. „ Penny could read to Martha for 15 minutes before she goes to sleep. „ Penny should take the books out of Martha’s room. „ Penny should get some books that have more pictures than words or audiotapes for Martha. 4. Check your understanding Adapting routines. Tip At night, Martha is used to reading quietly for about 30 minutes before she goes to sleep. As her dementia progresses, she finds that she is no longer able to read. Sometimes she is just staring at her book. She increasingly finds reading confusing. Penny wants to adapt this routine to fit Martha’s current abilities. iS u p p o rt In te rv e n ti o n M an u al 159 Do you know any of the routines of the person with dementia that you care for? Please write down any ideas that you have about routines for the person you care for and how they can be adapted. MODULE 4 Le ss on 5 . A n en jo ya bl e d ay 1. Activity iS u p p o rt In te rv e n ti o n M an u al 160 You finished this lesson, well done! MODULE 4 Le ss on 5 . A n en jo ya bl e d ay Let’s review what you have learned z Establishing routines is important for people living with dementia. z Try to keep routines similar to the ones your family member or friend had before developing dementia. z Be prepared to adapt routines as necessary as the abilities of the person living with dementia change over time. iS u p p o rt In te rv e n ti o n M an u al 161 iS u p p o rt In te rv e n ti o n M an u al 9 If Penny suggests keeping to the routine by drinking tea first, it is likely that Martha will go for a walk afterwards. Right! It will help Martha keep her routine. 9 ✓Penny should ask Martha what activities she is used to and in what order she would like to do them. Indeed! Penny can learn Martha’s routines. However, this may only work if Martha is in the early or middle stages of dementia. Later on, Martha might not be able to remember her routines. 8 Penny should force Martha to go for a walk because it was advised by the doctor. This response is not so good because it may make Martha feel agitated and upset. 1. Check your understanding Morning routines. ANSWERS - PROVIDING EVERYDAY CARE Lesson 5. An enjoyable day MODULE 4 AN SW ER S - P RO VI DI NG E VE RY DA Y CA RE • Le ss on 5 What suggestions do you have for Penny? iS u p p o rt In te rv e n ti o n M an u al 162 iS u p p o rt In te rv e n ti o n M an u al 8 ✗Penny should put away the baking and cooking pans and tell her mother that it’s just not possible to do this anymore. This is not very helpful. Penny has not tried to come up with an alternative to help her mother and it may make Martha feel upset. 9 Penny should go shopping with her mother and buy easy to prepare cakes and cookies, “out of the box”, with limited added work to enable Martha to continue to do some cooking and baking. This is a good suggestion. It respects Martha’s routine but adapts the activity to her current abilities. 9 As Martha’s abilities change, Penny could plan some time during the afternoon to bake and cook with her mother. This is an excellent plan for the future! It allows Martha to continue her routine with support as needed. MODULE 4 AN SW ER S - P RO VI DI NG E VE RY DA Y CA RE • Le ss on 5 2. Check your understanding Maintaining activities and interests during the day. What suggestions do you have for Penny? iS u p p o rt In te rv e n ti o n M an u al 163 iS u p p o rt In te rv e n ti o n M an u al 9 Penny could ask another family member to help Martha. This is a good idea. If others can come on a regular basis, this is the best solution for Martha as it maintains her routine and adapts to Martha’s changing abilities. 9 Penny could ask other people outside the family to walk with Martha to the community center such as a neighbour. This is a good response. Family is not always available and sometimes other people don’t know how they can help. This is a concrete way that Penny could ask for help. 8 Penny could tell her mother to do a quiet activity in the afternoons like watching television or listening to the radio. This is not likely to be a good solution at this time. It isolates Martha from other people and doesn’t allow her to engage in the activities that she enjoys. It might be a better solution in the later stages of dementia, when Martha’s abilities change. MODULE 4 AN SW ER S - P RO VI DI NG E VE RY DA Y CA RE • Le ss on 5 3. Check your understanding Maintaining activities and interests outside the house. What suggestions do you have for Penny? iS u p p o rt In te rv e n ti o n M an u al 164 iS u p p o rt In te rv e n ti o n M an u al 9 Penny could read to Martha for 15 minutes before she goes to sleep. This is a good idea. It helps Martha to continue enjoying reading but adapts the activity to her abilities. 8 Penny should take the books out of Martha’s room. This is not a good response because it does not recognise how important reading is to Martha. Penny should recognise that her mother and her can still share this routine; it just needs to be adapted. 9 Penny should get some books that have more pictures than words or audiotapes for Martha. This is a helpful adaption for people in the later stages of dementia who liked to read but find that they are not able to read books with a lot of words. 4. Check your understanding Adapting routines. MODULE 4 AN SW ER S - P RO VI DI NG E VE RY DA Y CA RE • Le ss on 5 What suggestions do you have for Penny? M od ul e 5 . D ea lin g wi th b eh av io ur ch an ge s DEALING WITH BEHAVIOUR CHANGES Lesson 1. Introduction to behaviour changes Lesson 2. Memory loss Lesson 3. Aggression Lesson 4. Depression, anxiety or apathy Lesson 5. Difficulty sleeping Lesson 6. Delusions and hallucinations Lesson 7. Repetitive behaviour Lesson 8. Walking and getting lost Lesson 9. Changes in judgement Lesson 10. Putting it all together 5 MODULE iS u p p o rt In te rv e n ti o n M an u al 166 MODULE 5 Why is this lesson important? Dementia changes the way that people behave, think or act. This can be distressing or upsetting not only for the person with dementia, but also for their families and carers, like you. How will this lesson help me? This lesson helps to improve your skills to prevent and cope with behaviour changes. What will I learn? 1. Behaviour changes that may be particularly stressful. 2. Understanding the cycle of behaviour change. 3. Different approaches to respond to behaviour changes. Lesson 1. Introduction to behaviour changes 1. Behaviour changes that may be particularly stressful Dementia changes the way people behave, think or act. This not only affects the person living with dementia, but can also be distressing and upsetting for carers, like you. ”Any behaviour that gets you or the person you care for upset is stressful.” In this introduction you will learn: z How you can identify behaviours that are potentially upsetting, stressful or difficult for you and the person you care for. z How you might handle behaviour changes. z How you might change circumstances to reduce or prevent behaviour changes. Le ss on 1 . I nt ro du ct io n to b eh av io ur ch an ge s iS u p p o rt In te rv e n ti o n M an u al 167 MODULE 5 Does the person you care for ever experience any of the following behaviour changes? Please select any that apply. Forgetting or losing things, not being able to recall recent events or remember dates and days of the week. Talking or acting in a threatening way, or doing things that make you feel frightened. Feeling sad, worried, frightened, frustrated or angry, being unusually emotional, crying, agitated or restless, withdrawn, unhappy, apathetic or reacting slowly. Restless at night, waking you or other family members up. Misinterpreting the world, having fixed false beliefs, things a person sees or hears that are not there, or becomes suspicious of those around them. „ Memory loss „ Aggression „ Depression, anxiety or apathy „ Difficulty sleeping „ Delusions and hallucinations: seeing or hearing things that are not there Behaviour changes Example 1. Activity Le ss on 1 . I nt ro du ct io n to b eh av io ur ch an ge s iS u p p o rt In te rv e n ti o n M an u al 168 MODULE 5 Repeating a question or an action over and over. Continuously walking around, leaving the house and getting lost. Saying the wrong thing at the wrong time, acting inappropriately in a situation, not understanding own limitations. None of these symptoms are present at this point in time. „ Repetitive behaviour: doing things over and over „ Wandering: walking around a lot „ Changes in judgement „ Not at this time Behaviour changes Example 1. Activity Many things can cause behaviour changes that are upsetting to you or the person you care for. This can have a bad effect on your relationship with the person you care for. It can even make you feel sad, angry, confused, or anxious. In some instances, you might even feel as though you can’t cope with the situation. In this lesson you will learn what you can do to reduce or prevent these situations. Remember Le ss on 1 . I nt ro du ct io n to b eh av io ur ch an ge s iS u p p o rt In te rv e n ti o n M an u al 169 MODULE 5 Understanding any behaviour change and what happens before and after the behaviour is very important. Sometimes you can reduce or even prevent certain behaviours. If you pay attention and understand what happens before or “triggers” the behaviour, this can help you to reduce or prevent the behaviour. Let’s look at the following example Kayla has dementia like the person you care for. Her husband Howard is taking care of her, like you are caring for your family member or friend. Howard often asks Kayla if she can remember who came to visit last week or what she had for dinner yesterday. Kayla cannot remember these things and gets agitated. As a result, Howard feels frustrated. 2.Understanding the cycle of behaviour change “Howard is asking Kayla questions” “Howard feels frustrated” What happens before? Carer’s response to the behaviour Behaviour “Kayla can’t answer the questions and gets agitated” Le ss on 1 . I nt ro du ct io n to b eh av io ur ch an ge s The diagram below shows what’s happening. iS u p p o rt In te rv e n ti o n M an u al 170 MODULE 5 What happens before the behaviour? What do you think happens before Kayla gets agitated that you might be able to change? Below are some examples. 1. Howard asks questions that Kayla cannot answer. 2. The tone of voice that Howard uses to ask these questions makes Kayla feel nervous. Now you try the next one. Please fill in your ideas on what comes before Kayla gets agitated in the box below. When you are done, check the answer section at the end of this lesson for more ideas. 1. Check your understanding Identifying what happens before the behaviour. Le ss on 1 . I nt ro du ct io n to b eh av io ur ch an ge s iS u p p o rt In te rv e n ti o n M an u al 171 MODULE 5 2. Check your understanding Different ways of responding to behaviour change. Now let’s look at Howard’s response So, what are we trying to do? We are trying to separate what comes before the behaviour and what the carer’s response is after the behaviour. How does Howard respond in this example? Howard gets frustrated because his wife Kayla forgot who came to visit and what she had for dinner. Howard can choose to change his response. Here are some responses, some are good, others are not. Please check what you think could be good responses. Howard could: „ Show that he is frustrated. „ Take a deep breath. „ Show his irritation by saying: “I already answered that, please stop bothering me”. „ Remind himself that his wife has dementia and cannot help that she forgets things. She is not forgetting on purpose. „ Next time, remember that asking her such questions will only cause frustration, not only for him, but also for his wife. „ Work with Kayla to record significant family and social events in a family diary. Le ss on 1 . I nt ro du ct io n to b eh av io ur ch an ge s iS u p p o rt In te rv e n ti o n M an u al 172 MODULE 5 3. Different approaches work at different times. What if Howard’s approach doesn’t work the first time? Different approaches work at different times, so Howard should not give up! Howard could try several approaches until he finds one that works. Here are some examples of what Howard could do: z He can ask other people’s advice, for example his health care provider. z He can also ask someone at the Alzheimer’s Association (a community based organisation that provides support for people with dementia and their carers) in his country: https://www.alz.co.uk/associations. z He can search for information on the internet. Le ss on 1 . I nt ro du ct io n to b eh av io ur ch an ge s iS u p p o rt In te rv e n ti o n M an u al 173 MODULE 5 Now think about your own situation It is important to apply what you have just learned to your own situation with the person you care for. Use the spaces below, like a diary. 2. Activity What could you do to change what happened before the behaviour in order to reduce or prevent it? What is the behaviour that was the most distressing or upsetting to you in the past month? How could you respond in that situation? Le ss on 1 . I nt ro du ct io n to b eh av io ur ch an ge s iS u p p o rt In te rv e n ti o n M an u al 174 MODULE 5 Let’s review what you have learned z People with dementia may experience behaviour changes that are distressing or upsetting to them or those around them. z It is helpful to identify what happens before the stressful behaviour to understand what might cause it or make it worse. z It is also helpful to identify how you usually respond, what you feel or what you do. z Take a deep breath and think about the best ways to respond that will be the least distressing to you and the person you care for. z Try different responses and approaches, as the first one does not always work. z Seek professional help if you cannot manage a situation. You finished this lesson, well done! Le ss on 1 . I nt ro du ct io n to b eh av io ur ch an ge s iS u p p o rt In te rv e n ti o n M an u al MODULE 5 175 iS u p p o rt In te rv e n ti o n M an u al z Kayla has dementia. Remembering who came to visit last week is difficult for her. z Kayla has dementia and cannot remember what she had for dinner. 1. Check your understanding Identifying what happens before the behaviour. ANSWERS- DEALING WITH BEHAVIOUR CHANGES Lesson 1. Introduction to behaviour changes AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 1 iS u p p o rt In te rv e n ti o n M an u al MODULE 5 176 iS u p p o rt In te rv e n ti o n M an u al AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 1 8 Show that he is frustrated. This is not the best response. Showing that he is frustrated is an inappropriate way to deal with the stressful behaviour, it may even make the person living with dementia irritable. 9 ✓Take a deep breath. This is a good response. It shows that Howard is trying to control his frustration. 8 Show his irritation by saying: “I already answered that, please stop bothering me”. This reaction is not so good, because Howard’s irritability may upset Kayla even more. 9 ✓Remind himself that his wife has dementia and cannot help that she forgets things. She is not forgetting on purpose. This is a good response, because Howard recognises that Kayla is living with dementia. 9 Next time, remember that asking her such questions will only cause frustration, not only for him, but also for his wife. This is a good response, because it may prevent this frustrating situation. 9 Work with Kayla to record significant family and social events in a family diary. This is a good response, because they can revisit the events from time to time if Kayla is missing family members and friends. 2. Check your understanding Different ways of responding to behaviour change. What are some of the ways that Howard could respond? iS u p p o rt In te rv e n ti o n M an u al MODULE 5 177 Why is this lesson important? Memory loss can be frustrating for the person living with dementia and the carer. How will this lesson help me? In this lesson you will practice several ways to respond to memory loss, and find out what may help you deal with the person’s increasing forgetfulness. What will I learn? 1. What is memory loss? 2. How to respond to memory loss? Lesson 2. Memory loss 1. What is memory loss? People with dementia will increasingly lose their memory over time. In the beginning, they may forget recent events, where they put their keys, their wallet or a particular piece of paper. They find it harder to remember phone numbers, important dates and appointments. However, past memories, such as childhood memories, are often preserved for a longer period of time. Le ss on 2 . M em or y l os s iS u p p o rt In te rv e n ti o n M an u al MODULE 5 178 1. What is memory loss? People with dementia will increasingly lose their memory over time. In the beginning, they may forget recent events, where they put their keys, their wallet or a particular piece of paper. They find it harder to remember phone numbers, important dates and appointments. However, past memories, like childhood memories, are often preserved for a longer period of time. Do s t e person you care for som times forget things? If so, what kinds of things do they forget? Please write them down. 1. Activity Le ss on 2 . M em or y l os s iS u p p o rt In te rv e n ti o n M an u al MODULE 5 179 How would you advise Maya to deal with her mother’s memory loss? Please check all the responses that you feel are appropriate from the list below. „ Ask a neighbour to go with Anne once a week to the market to buy groceries. „ Create a memory aid together with Anne, e.g. a list of groceries that Anne needs to buy, and put the list in a place where it can be seen, so that it is easy to access. „ Go out and buy groceries immediately. „ Ask: “Mom, what’s wrong with you, there is no food in the house”. „ Sit down with Anne and make a list of groceries. Go shopping together. 1. Check your understanding Forgetting to buy groceries. 2. How to respond to memory loss? In this lesson you can practice several ways to respond to memory loss, and find out what may help you deal with it. Let’s have a look at an example Anne is living with dementia. She has a daughter named Maya. They live very close to each other. When Maya goes to visit Anne’s house, she notices that the fridge or cupboard is empty. Anne often forgets what she usually buys from the market. The person you care for might also forget other things. The same goes for Anne. Le ss on 2 . M em or y l os s iS u p p o rt In te rv e n ti o n M an u al MODULE 5 180 What do you think Maya’s response should be? Please check all the responses that you feel are appropriate from the list below. „ Tell her mother what to do over the phone. „ Ask her mother what she usually does on that given day. For example, Monday is wash day; Thursday is going to the market day. „ Move in with her mother. „ Go straight over and take charge of the situation, by ordering her mother around. „ Plan to visit Anne every weekend and write out to-do lists for every day of the week. „ Hire someone to stay with her mother all the time. „ Ask her mother while on the phone to get a pencil and paper. Talk through the plan for the day together. 2. Check your understanding Forgetting daily activities. Let’s look at another example Maya and Anne are talking on the phone. Maya notices that Anne often forgets what she normally does during the day. Maya is impatient with Anne, and tells her mother, “this is getting worse”. Le ss on 2 . M em or y l os s iS u p p o rt In te rv e n ti o n M an u al MODULE 5 181 How do you think Maya should respond to this situation? Please check all the responses that you feel are appropriate from the list below. „ Maya puts notes near the clock when her mother needs to take a pill. „ Maya says, “Mom, how could you forget your medications?”, and “you know you really need them to stay healthy!” „ Maya goes through the medicine cabinet, sits down and cries about her mother’s memory loss. „ Maya goes over the medications with her mom. She purchases a pill box, and puts the pills in the box at the right day and time and calls her mom every day to instruct her to take her medications. 3. Check your understanding Forgetting medication. Sometimes memory loss can be more serious, like in the next example. Let’s look at an example Maya comes to visit and discovers that Anne is having trouble remembering which medications to take and at what time.Le ss on 2 . M em or y l os s iS u p p o rt In te rv e n ti o n M an u al MODULE 5 182 Let’s look at your own situation It is important to apply what you have learned to your own situation. How could you respond to help the person you care for deal with their memory loss? Write down some ideas. 2. Activity Le ss on 2 . M em or y l os s iS u p p o rt In te rv e n ti o n M an u al MODULE 5 183 z Memory loss is very common for people with dementia. z Memory loss can be stressful to deal with. z In case of memory loss, try a memory aid like a note, pill- box, reminder/alarm, etc. z If possible, involve the person you care for to find the best way to support them in case of memory problems. z It is important to remember that the person living with dementia is not to blame, because he/she can’t help that they forget. z When one approach doesn’t work, try another one. z Realize there may be good and bad days. z Remind yourself that memory loss is part of the disease. z Take a deep breath and think about the best ways to respond that will be the least distressing to you and the person you care for in the case of memory loss. You finished this lesson, well done! Let’s review what you have learned Le ss on 2 . M em or y l os s iS u p p o rt In te rv e n ti o n M an u al MODULE 5 184 iS u p p o rt In te rv e n ti o n M an u al Relaxation exercise - Neck movements ANSWERS - DEALING WITH BEHAVIOUR CHANGES Lesson 2. Memory loss 9 Ask a neighbour to go with Anne once a week to the market to buy groceries. This might be helpful. Anne will have groceries and a nice visit with the neighbour. 9 ✓Create a memory aid together with Anne, e.g. a list of groceries that Anne needs to buy, and put it in a prominent place, so that the list is easy to access. This is a good response. It addresses Anne’s memory loss and may become a weekly shared pleasant activity. 8 Go out and buy groceries immediately. This answer is not so good because it is a panic reaction and a one-time solution. It does not solve the problem at hand. 8 Ask: “Mom, what’s wrong with you, there is no food in the house”. This answer is not so good because Anne cannot help that she forgets to buy food and may feel embarrassed that she has done something wrong. It does not improve the situation. 9 Sit down with Anne and make a list of groceries. Go shopping together. This answer may be a good one because Maya is addressing her mother’s needs. However, she might first want to try another approach. For example, with a list of groceries that her mother may still be able to go shopping without help. 1. Check your understanding Forgetting to buy groceries. AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 2 What would you advise Maya? iS u p p o rt In te rv e n ti o n M an u al MODULE 5 185 iS u p p o rt In te rv e n ti o n M an u al Relaxation exercise - Neck movements 8 Tell her mother what to do over the phone. This response is not so good because her mother may not understand or be able to follow a phone conversation. 9 Ask her mother what she usually does on that given day. For example, Monday is wash day; Thursday is going to the market day. This response may be a good one because Maya can use this information to remind her mother. 8 Move in with her mother. This is not the right response. There are several other less drastic approaches that Maya has not yet tried. 8 Go straight over and take charge of the situation, by ordering her mother around. This response is not so good because it is a one-time solution and does not solve the problem at hand. 9 Plan to visit Anne every weekend and write out to-do lists for every day of the week. This is a good response because it may help her mother to remember. 8 Hire someone to stay with mother all the time. This is not the right response. There are several less drastic approaches that Maya has not tried yet. 9 Ask her mother while on the phone to get a pencil and paper. Talk through the plan for the day together. This is a good response because it may help her mother to remember. Maya could call her mother every morning at a certain time, and ask her to get a pencil and paper and to plan her day together. 2. Check your understanding Forgetting daily activities. What do you think Maya’s response should be? AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 2 iS u p p o rt In te rv e n ti o n M an u al MODULE 5 186 iS u p p o rt In te rv e n ti o n M an u al Relaxation exercise - Neck movements 9 Maya puts notes near the clock when her mother needs to take a pill. This may be good to do because a memory aid could help Anne remember to take her pills. 8 Maya says, “Mom, how could you forget your medications?”, and “You know you really need them to stay healthy!” This response is not helpful because Anne cannot help that she forgets to take her medications. Memory loss is part of her disease. 8 Maya goes through the medicine cabinet, sits down and cries about her mother’s memory loss. This is not the way to deal with her mother’s memory loss. Getting upset will not solve her mother’s problem of forgetting to take medications. 9 Maya goes over the medications with her mom. She purchases a pill box, and puts the pills in the box at the right day and time and calls her mom every day to instruct her to take her medications. This is a good response because this memory aid might help Anne to take medications at the right day and time. Some pill reminder boxes come with alarms that are pre-set to remind the person to independently take their medications. 3. Check your understanding Forgetting medication. How should Maya respond? AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 2 iS u p p o rt In te rv e n ti o n M an u al MODULE 5 187 Why is this lesson important? From time to time, people with dementia may become angry, aggressive or violent. This is often one of the most difficult things to cope with for carers. How will this lesson help me? This lesson helps to understand possible causes of aggression and improve your skills to prevent or deal with aggression. What will I learn? 1. Why does aggression happen? 2. How to respond to aggressive behaviour? 3. How to deal with ongoing aggression? Lesson 3. Aggression 1. Why does aggression happen? From time to time, people with dementia may become angry, aggressive or violent. Aggression can happen for a variety of reasons. It can be due to unmet needs, illness such as a urinary tract infection, medication combinations or side effects, or something that is happening around the person with dementia. In addition, people with dementia may have difficulty understanding others, judging social situations, controlling their feelings or expressing themselves like they did before. They may also have personality or mental health changes that contribute to aggressive behaviours. At times, aggression is displayed towards people known to the person living with dementia. At other times it can be with strangers. Aggression is often one of the most difficult things to cope with for carers. Le ss on 3 . A gg re ss io n iS u p p o rt In te rv e n ti o n M an u al MODULE 5 188 Let’s look at your situation Check your answer, yes or no. Does the person you care for ever talk to you or other people in an aggressive way? „ Yes „ No Does the person you care for ever act aggressively towards you or other people? „ Yes „ No 1. Activity WARNING! If the person is suddenly behaving aggressively, there may be an underlying cause (for example a urinary infection) that should be investigated by a doctor. Le ss on 3 . A gg re ss io n iS u p p o rt In te rv e n ti o n M an u al MODULE 5 189 Do you remember the cycle of behaviour change? Just like we mentioned in Lesson 1. Introduction to behaviour changes, it is important to break down the cycle of stressful responses into three parts in order to help you deal with them. What happens before? Carer’s response to the behaviour Behaviour Here they are Le ss on 3 . A gg re ss io n iS u p p o rt In te rv e n ti o n M an u al MODULE 5 190 Neil wants to assist his father-in-law, Amit, in taking a bath because Amit needs to see a doctor. Neil says: “it is time for your bath”. Amit refuses. Neil has little time and tugs on his father-in-law’s arm. He says: “you need to bathe because you’re going to see the doctor.” Amit pulls his arm back and resists. He is much stronger than Neil. Neil tugs it again and says angrily: “you must take a bath because you are going to the doctor and need to be clean”. Amit gets very angry, shouts and even tries to shove Neil, who becomes upset. Amit angrily refuses to take a bath Can you break down the cycle of behaviour change in this example into its three parts? Please fill in the boxes below. What comes before the behaviour? What is the stressful behaviour? What is Neil’s response? 1. Check your understanding Understanding aggressive behaviour. Let’s see how the cycle works with a different example. Le ss on 3 . A gg re ss io n iS u p p o rt In te rv e n ti o n M an u al MODULE 5 191 „ Force his father-in-law to start bathing anyway. „ Maintain the dignity and privacy of his father-in-law. He could keep him in a robe or towel until he actually takes a bath. „ Play soothing music that Amit likes. „ Walk away and come back later. „ Explain logically why he should bathe. „ Put himself in Amit’s shoes and try to understand why Amit might not want to take a bath. 2. Check your understanding Responding to aggressive behaviour. 2. How to respond to aggressive behaviour? There are many ways to respond to aggressive behaviour. Some are good, others are not. In the exercise below you can learn more. How could Neil react differently? Please indicate what you think are good responses. Neil could: Le ss on 3 . A gg re ss io n iS u p p o rt In te rv e n ti o n M an u al MODULE 5 192 „ Make sure that there is enough time so that it is not so stressful. Rather than trying to bathe Amit right before the doctor’s appointment, when things are rushed, Neil might try to assist with bathing the day before. „ Before the next bath time, identify the best time of day for Amit to take a bath and find out whether he prefers a bath or a shower. „ When bathing Amit, keep a towel over his shoulders to help him maintain dignity and to keep him warm. „ Ask for someone else to help with Amit’s bath time. „ Help Amit with a bed bath by using warm, wet towels with soap without taking Amit to the bath. „ Say in an irritated voice: “I have already answered that, please stop bothering me.” “You must take a bath!” 2. Check your understanding (continued) Responding to aggressive behaviour. Le ss on 3 . A gg re ss io n iS u p p o rt In te rv e n ti o n M an u al MODULE 5 193 What could Neil do if his approach does not work the first time? Check all that apply. „ Neil could try several approaches until he finds one that works. „ Neil could get suggestions from others. 3. Check your understanding Ongoing aggressive behaviour. 3. How to deal with ongoing aggression? Sometimes your first approach may not work. Don't get discouraged, different responses may work at different times. Take a deep breath and think about the most positive ways to respond that will be the least distressing to you and the person you care for. Remind yourself that aggression can be a part of the dementia, or a reaction to the disease. Reminder Different responses may work at different times. Le ss on 3 . A gg re ss io n iS u p p o rt In te rv e n ti o n M an u al MODULE 5 194 Let’s look at your own situation It is important to apply what you have just learned to your own situation. Has the person that you care for ever been aggressive towards you? If so, describe the last time that this happened in the spaces below. 2. Activity What happened before the person you care for became aggressive? What could you do to change your response to this behaviour? What could change in the environment to make it more calming? Le ss on 3 . A gg re ss io n iS u p p o rt In te rv e n ti o n M an u al MODULE 5 195 z Aggression like shouting, shoving or pushing can happen to carers of people with dementia. z Aggression can be very upsetting for the person living with dementia as well as the carer. z Try to change the environment to make it more calming. z Try to maintain the dignity of the person living with dementia; do not force them to engage in activities that they do not wish to do. z If one approach does not work, try another one. z Realize that there may be worse, but also better moments. z Remind yourself that aggression can be a part of the dementia, or a reaction to the disease. z If the person is suddenly behaving aggressively, there may be an underlying cause (for example a urinary infection) that should be investigated by a doctor. z Take a deep breath and think about the most positive ways to respond that will be the least distressing to you and the person you care for. z If the person you care for continues to show aggression, there are many resources available on the internet. For example, look at the website of the Alzheimer Association in your country (www.alz.co.uk/associations). You finished this lesson, well done! Let’s review what you have learned Le ss on 3 . A gg re ss io n iS u p p o rt In te rv e n ti o n M an u al MODULE 5 196 iS u p p o rt In te rv e n ti o n M an u al Relaxation exercise - Neck movements ANSWERS - DEALING WITH BEHAVIOUR CHANGES Lesson 3. Aggression AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 3 Amit angrily refuses to take a bath Can you break down the cycle of behaviour change in this example into its three parts? Please fill in the boxes below. What comes before the behaviour? Neil tugs Amit’s arm and says angrily: “you must take a bath because you are going to the doctor and need to be clean”. Amit gets very upset and shouts and even tries to shove Neil. Neil becomes upset. What is the stressful behaviour? What is Neil’s response? 1. Check your understanding Understanding aggressive behaviour. iS u p p o rt In te rv e n ti o n M an u al MODULE 5 197 iS u p p o rt In te rv e n ti o n M an u al Relaxation exercise - Neck movements AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 3 8 Force his father-in-law to start bathing anyway. This is not helpful, because it does not change the situation and may only make it worse. 9 Maintain the dignity and privacy of his father-in-law. He could keep him in a robe or towel until he actually takes a bath. Correct. Maintaining dignity and privacy is always a good idea when caring for someone with dementia. By doing this Neil makes sure that the person living with dementia is comfortable. 9 Play soothing music that Amit likes. Yes. Though it may take extra time to arrange the music, this option may help sooth both Neil and Amit. This may create relaxation and less negative responses from both of them. 9 Walk away and come back later. This is a good response. It gives Neil time to calm down, take a deep breath and come up with a new strategy. It also gives Amit time to forget about the negative encounter and he may be in a better mood if approached differently later. 8 Explain logically why he should bathe. This answer is not so good. It does not take into account that Amit may not be able to understand because of his dementia. 2. Check your understanding Responding to aggressive behaviour. How could Neil react differently? Neil could: iS u p p o rt In te rv e n ti o n M an u al MODULE 5 198 iS u p p o rt In te rv e n ti o n M an u al Relaxation exercise - Neck movements AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 3 9 Make sure that there is enough time so that it is not so stressful. Rather than trying to bathe Amit right before the doctor’s appointment, when things are rushed, Neil might try to assist with bathing the day before. Though taking more time may not always be feasible, this option is good. It may reduce tension for Neil and Amit. 9 Before the next bath time, identify the best time of day for Amit to take a bath and find out whether he prefers a bath or shower. This answer is good. Keeping people with dementia to their regular routines shows attention to their preferences. 9 When bathing Amit, keep a towel over his shoulders to help him maintain dignity and to help keep him warm. This answer is good. Amit could be embarrassed to be naked in front of his son-in-law or the temperature of the water or the room could be too cold. It’s important to look for ways to make the situation more pleasant. 9 ✓Neil could ask for someone else to help with Amit’s bath time. This answer is good. Sometimes the person living with dementia is more comfortable with one family member helping them bathe than another. Sometimes even a stranger might find it easier as the person living with dementia might be less embarrassed than with a family member. 2. Check your understanding (continued) Responding to aggressive behaviour. iS u p p o rt In te rv e n ti o n M an u al MODULE 5 199 iS u p p o rt In te rv e n ti o n M an u al Relaxation exercise - Neck movements AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 3 9 Neil could help Amit with a bed bath by using warm, wet towels with soap without taking Amit to the bath. This answer is good. If the person living with dementia is afraid of the bath, or running water, this option will help relieve their distress and can sometimes be used instead of baths. There are also products such as dry shampoo and cleaning products used for young children that might help. 8 Say in an irritated voice: “I have already answered that, please stop bothering me.” “You must take a bath!” This is not helpful, because it does not change the situation. 2. Check your understanding (continued) Responding to aggressive behaviour. iS u p p o rt In te rv e n ti o n M an u al MODULE 5 200 iS u p p o rt In te rv e n ti o n M an u al Relaxation exercise - Neck movements AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 3 What could Neil do if his approach does not work the first time? 9 Neil could try several approaches until he finds one that works. 9 Neil could get suggestions from others. There may be other approaches that you could try. This can be information from people that you know or that is available on the Internet. See for example: http://www.alz.co.uk/ 3. Check your understanding Ongoing aggressive behaviour. iS u p p o rt In te rv e n ti o n M an u al MODULE 5 201 Why is this lesson important? Dementia may affect a person’s mood and interest in daily activities, people and events. How will this lesson help me? This lesson helps you to understand the possible causes of depression and anxiety, while improving your skills to prevent or reduce mood problems. What will I learn? 1. What are depression, anxiety and apathy? 2. How to respond when a person living with dementia is feeling depressed or anxious? 3. How to respond when a person living with dementia loses interest in daily activities? Lesson 4. Depression, anxiety and apathy 1. What are depression, anxiety and apathy? Depression, anxiety and apathy are common among people with dementia. Dementia may affect a person’s mood and interest in daily activities, people and events. This may be due to changes in the brain, but also to the emotional reaction of what is happening to them. People with dementia may feel sad, worried, frightened, frustrated or angry, may cry and be unusually emotional, agitated or restless. They may also be withdrawn, unhappy and react slowly. These are all behaviours of depression and apathy. Anxiety can lead to behaviours similar to depression. People with dementia can be worried about being left alone, who is handling their money, or where lost items have gone to and become anxious. Le ss on 4 . D ep re ss io n, an xie ty an d ap at hy iS u p p o rt In te rv e n ti o n M an u al MODULE 5 202 2. How to respond when a person living with dementia is feeling depressed or anxious? Let’s look at an example Juan has dementia and lives with his sister, Isabel. On several occasions Isabel has found Juan sitting in his favourite chair looking very sad, hunched over, and sometimes crying. Isabel tries to cheer him up. Unfortunately, everything that she tries does not seem to work. How should Isabel handle this situation? Below are some things that Isabel may do or say. Please select all responses that you think might work. „ Walk over to Juan and say in a calm, reassuring tone, “I have some ideas about how you can feel better, let’s talk. „ Say: “Juan, what’s the matter with you? I’m tired of seeing you like this. Just get up and do something.” „ Say: “men don’t cry and get sad, we used to have so much fun together.” „ Go over and touch Juan on the arm or shoulder. “I know that you feel bad, I do too. What we’re going through is really hard.” „ Sit with Juan and suggest that they do a pleasant activity together. „ Sigh and walk away, thinking that there is nothing that she can do. 1. Check your understanding Responding to a person with dementia who is feeling depressed. Le ss on 4 . D ep re ss io n, an xie ty an d ap at hy iS u p p o rt In te rv e n ti o n M an u al MODULE 5 203 Here is another example Emma has dementia and lives with her family. Benjamin is her grandson. Because Benjamin’s parents work and he is in school, he is the main carer in the afternoons. Benjamin is watching a TV show while his grandmother is sewing. The TV show has loud music and vulgar language. Suddenly, his grandmother jumps up and paces up and down the room, wringing her hands. She is muttering to herself “I need to go home”, “I need to go home”. How do you think that Benjamin should respond to this situation? Below are some things that Benjamin may do or say. Please select all the correct responses. „ Think “Grandmother cannot help the way that she behaves.” „ Say “Grandmother! Sit down, you’re making it impossible for me to watch my show.” „ Give his grandmother a smile and reassure her that she is safe. „ Ask his grandmother to help him with something. „ Turn up the volume to drown out the muttering and turn away from her. „ Look for his headphones and encourage his grandmother to go back to her sewing so that she is busy. 2. Check your understanding Responding to a person with dementia who is feeling anxious. Le ss on 4 . D ep re ss io n, an xie ty an d ap at hy iS u p p o rt In te rv e n ti o n M an u al MODULE 5 204 „ Sofia walks over to George and says “I’m sick and tired of this laziness, get up and let’s go". „ Sofia goes over to George and strokes his hair. She says that she loves him and that she would like to do something together. George turns to her and smiles weakly. „ Sofia says: “you never do anything I want anymore, it is impossible to keep on living with you. I don’t know what I’m going to do.” „ Sofia says: “let’s go for a walk together, I know how much you would enjoy getting out of the house for a little while.” „ Sofia closes the door and doesn’t try to engage with George anymore. „ Sofia thinks back to what George used to really like doing and thinks how she could help, for example by reading the newspaper to him, cooking his favourite dish or visiting a shop to let him straighten the shelves with the shopkeeper’s permission. 3. Check your understanding Responding to a person with dementia who loses interest in daily activities. 3. How to respond when a person living with dementia loses interest in daily activities? Let’s look at an example George has dementia and lives with his wife Sofia. George used to be a shopkeeper and was very active in the community. Recently, George has been sitting in a chair near a large window and staring blankly outside, this type of behaviour can also be known as apathy where the person with dementia has trouble becoming interested in doing something. Sofia has become very concerned, because this is not like him. He seems removed and distant from her. One day, she walks in and says “George, shall we go out for a walk?” He does not respond. How do you think Sofia should react? Please check all the responses that you think are appropriate. Le ss on 4 . D ep re ss io n, an xie ty an d ap at hy iS u p p o rt In te rv e n ti o n M an u al MODULE 5 205 Let’s look at your own situation It is important to apply what you have learned to your own situation. The spaces below are for you, like a diary. Does the person living with dementia ever show changes in mood or interest, or any signs of depression or anxiety? If so, what do these changes look like? What could you do to prevent this? How could you respond in a different way? 1. Activity Le ss on 4 . D ep re ss io n, an xie ty an d ap at hy iS u p p o rt In te rv e n ti o n M an u al MODULE 5 206 z Signs of depression and anxiety are common in people with dementia. z Changes in mood can be very upsetting to the person living with dementia and the carer. z People with mood problems need extra love and support. z It is important to identify ways to stop or reduce mood changes, by comforting and getting the person interested in things that they like to do. z If one approach doesn’t work, try another one. z In case of mood changes, remind yourself that they may be part of the disease or a reaction to the disease. z Take a deep breath and think about the best ways to respond that will be the least distressing to you and the person you care for in case they have mood problems or experience a loss of interest. Let’s review what you have learned It is important to recognize when things get serious. If the person you care for has serious and constant mood changes or you think that they are in danger of harming themselves, it is important to seek medical advice right away. Remember You finished this lesson, well done! Le ss on 4 . D ep re ss io n, an xie ty an d ap at hy iS u p p o rt In te rv e n ti o n M an u al MODULE 5 207 iS u p p o rt In te rv e n ti o n M an u al ANSWERS - DEALING WITH BEHAVIOUR CHANGES Lesson 4. Depression, anxiety and apathy AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 4 9 Walk over to Juan and say in a calm, reassuring tone, “I have some ideas for how you can feel better, let’s talk. This is a good response because Juan needs more support due to the changes in his mood. 8 Say: “Juan, what’s the matter with you? I’m tired of seeing you like this. Just get up and do something.” This response is not helpful because Juan cannot help that he is feeling sad. 8 Say: “men don’t cry and get sad, we used to have so much fun together.” This response is not good because it might embarrass Juan and may make him feel even more sad. Below are some things that Isabel may do or say. Please select all responses that you think might work. 9 Go over and touch Juan on the arm or shoulder. “I know that you feel bad, I do too. What we’re going through is really hard.” This is a good response because people who are feeling sad need extra love, support and understanding. 9 Sit with Juan and suggest that they do a pleasant activity together. This is a good response because it may distract Juan and make him feel better. 8 Sigh and walk away, thinking thinking that there is nothing that she can do. This is not helpful because Isabel is further isolating Juan. 1. Check your understanding Responding to a person with dementia who is feeling depressed. iS u p p o rt In te rv e n ti o n M an u al MODULE 5 208 iS u p p o rt In te rv e n ti o n M an u al AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 4 9 Think “Grandmother cannot help the way that she behaves.” This is a good response because it recognizes that Emma’s reaction might be due to changes in her brain. 8 Say “Grandmother! Sit down, you’re making it impossible for me to watch my show.” This response is not good because a direct order like this may make Emma feel even more anxious. 9 Give his grandmother a smile and reassure her that she is safe. This is a good response because people who are feeling anxious need extra love and support. Below are some things that Benjamin may do or say. Please select all the correct responses. 9 Ask his grandmother to help him with something. This might help because it might distract Emma and change her reaction. 8 Turn up the volume to drown out the muttering and turn away from her. This is not a good response. It will only increase his grandmother’s anxiety. 9 Look for his headphones and encourage his grandmother to go back to her sewing so that she is busy. This is a good response. Benjamin can still watch TV with headphones so it is not too loud for Emma, and Emma might be able to engage in her sewing again. 2. Check your understanding Responding to a person with dementia who is feeling anxious. iS u p p o rt In te rv e n ti o n M an u al MODULE 5 209 iS u p p o rt In te rv e n ti o n M an u al AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 4 8 Sofia walks over to George and says “I’m sick and tired of this laziness, get up and let’s go”. This response is not good because a direct order may make George more withdrawn. It doesn’t show any understanding of his dementia. 9 Sofia goes over to George and strokes his hair. She says that she loves him and that she would like to do something together. George turns to her and smiles weakly. This is a good response because it recognizes that the problem is related to his dementia. She is not taking it personally and is expressing extra love and support. 9 Sofia says: “you never do anything I want anymore, it is impossible to keep on living with you. I don’t know what I’m going to do.” This is not a good response because it shows that she is giving up on George. He may become even more withdrawn from her. How do you think Sofia should react? Please check all the responses that you think are appropriate. 9 Sofia says: “let’s go for a walk together, I know how much you would enjoy getting out of the house for a little while.” This is a good response because it is reassuring and may comfort George. 8 Sofia closes the door and doesn’t try to engage with George anymore. This is not the right response because it may worsen George's loss of interest. 9 Sofia thinks back to what George used to really like doing and thinks how she could help, for example by reading the newspaper to him, cooking his favourite dish or visiting a shop to let him straighten the shelves with the shopkeeper’s permission. This is a good response because it shows Sofia cares about George and wants to help him engage in an activity that he would enjoy. 3. Check your understanding Responding to a person with dementia who loses interest in daily activities. iS u p p o rt In te rv e n ti o n M an u al MODULE 5 210 Why is this lesson important? People with dementia may have difficulty sleeping which can impact the carer’s sleep as well. How will this lesson help me? This lesson will provide examples and practice to promote good sleep. What will I learn? 1. How to deal with sleeping problems in a person with dementia? 2. How to deal with a person with dementia who wakes up in the middle of the night? Lesson 5. Difficulty sleeping 1. How to deal with sleeping problems in a person with dementia? Difficulty sleeping can be a problem for people with dementia and their families. People with dementia can have difficulty falling asleep, may wake up in the middle of the night, or wake up too early in the morning. Carers may have their sleep disrupted as a result, which can make it harder to provide care. In this lesson, you will practice how to promote good sleep for the person living with dementia. Le ss on 5 . D iffi cu lty s le ep in g iS u p p o rt In te rv e n ti o n M an u al MODULE 5 211 What is the main sleeping problems of the person that you care for? Please select all that apply. „ Difficulty falling asleep „ Waking up in the middle of the night „ Combination of the above „ Other (please specify): „ No problems at this point 1. Activity Le ss on 5 . D iffi cu lty s le ep in g iS u p p o rt In te rv e n ti o n M an u al MODULE 5 212 Can you break down the cycle of behaviour change in this example into its three parts? What comes before the behaviour? What is the stressful behaviour? What does this mean for Grace? 1. Check your understanding Understanding sleeping difficulties. Difficulty falling asleep Rosie is an older woman with dementia. She lives with her family. She sleeps near her granddaughter, Grace. Usually, the family has dinner around 6pm. The family is used to doing some activities together afterwards. Rosie does not always like these activities so the family often wants her to go to bed as early as 8pm. Granddaughter Grace notices that Rosie has trouble falling asleep. Rosie continues to open and shut her dresser drawers noisily during the evening. When Grace goes to bed, the noise Rosie is making keeps Grace awake. Le ss on 5 . D iffi cu lty s le ep in g iS u p p o rt In te rv e n ti o n M an u al MODULE 5 213 Here are some examples of what Grace could do. Please select all that you think may be appropriate to help Rosie fall asleep: „ Go for a walk with Rosie and add more physical activity during the day. „ Give her a pill to sleep. „ Try and ensure that Rosie does not drink coffee or too much fluid a few hours before going to bed. „ Make lunch the bigger meal of the day. „ Limit daytime naps to 15 to 30 minutes. „ Play soothing music before bedtime to help Rosie sleep. „ Create a bedtime routine, like lowering the lights, washing face and teeth, and changing into pajamas. „ Keep in mind that some people may require less sleep. Generally, 6 to 8 hours sleep from 20:00 means night waking between 2:00 to 4:00 in the morning. 2. Check your understanding Responding to sleeping difficulties. So far, we have covered some basic steps to help the person with dementia fall asleep. What if the problems are a bit more complex? Le ss on 5 . D iffi cu lty s le ep in g iS u p p o rt In te rv e n ti o n M an u al MODULE 5 214 What can Geeta do to keep Vani from wandering at 3:00 in the morning? Please select all responses that you feel are appropriate. „ Try to understand what will help Vani sleep. Some people prefer to keep the room dark with no television or as little noise as possible while others prefer a night light, soft music or a television playing. „ Give Vani a favourite object to relax (e.g. blanket or stuffed animal). „ Schedule an appointment with the doctor to find out if there is a medical reason for her trouble sleeping (e.g. urinary tract infection, pain, medication causing hallucinations). „ Develop an activity schedule to keep Vani awake and busy during the day. „ Encourage physical exercise during the day (e.g. walking, stretching). „ Tell Vani that you won’t take care of her anymore if you are continuously woken up at night. „ Ask if she has to go to the bathroom or is hungry or thirsty. If she says “yes”, then just assist her to meet these needs. „ Physically take hold of her and put her back in bed. „ Ask for help from a family member, friend or a paid professional. 3. Check your understanding Dealing with waking in the middle of the night (1). 2. How to deal with a person with dementia who wakes up in the middle of the night? Let’s look at another example It is 3:00 in the morning, Vani wakes up and starts walking around the house. Her daughter-in-law, Geeta, is sleeping. Vani paces throughout the house and then goes to Geeta and wakes her up. Vani asks: “Where are we? I want to go home”. Geeta is upset, because she has a long day at work tomorrow. Geeta says: “mother, you need to go back to bed, it is 3:00 in the morning.” Vani says: “I am not sleepy.” Geeta yells: “I can’t take this anymore.” Le ss on 5 . D iffi cu lty s le ep in g iS u p p o rt In te rv e n ti o n M an u al MODULE 5 215 Which of the responses below would you choose if the person you care for experiences sleeping problems? Please select all responses that you feel are appropriate. „ Remind yourself to stay calm and focus on getting the person living with dementia to sleep. This way, you will use your energy to solve the sleeping problem, rather than reacting emotionally. „ Gently remind the person that it is dark outside and it is time to sleep. If needed try to relax the person, for example by playing soothing music. „ Read aloud to the person you care for. Choose something that you know has a calming effect, perhaps a poem or story. Sing a song or chant together. Another option is to pray or meditate for 15 minutes together. „ Comfort the person living with dementia. Give them a stuffed animal and hug or hold them until they fall asleep. 4. Check your understanding Dealing with waking in the middle of the night (2). In the previous exercise, you identified several ways of dealing with waking in the middle of the night. Now let's look at your own situation and some additional responses. Sleeping problems may be related to depression. If the person you care for has difficulty sleeping, you might want to read Lesson 4 Depression, anxiety or apathy. Please also seek advice from a doctor. Tip Le ss on 5 . D iffi cu lty s le ep in g iS u p p o rt In te rv e n ti o n M an u al MODULE 5 216 Let’s look at your own situation In an earlier Activity on page 211, you identified the main sleeping problem of the person you care for. It is important to apply what you have learned to your own situation. The space below is for you, like a diary. What could you do to help tackle the sleeping problems? What could you do to improve your reaction to sleeping problems? 2. Activity Le ss on 5 . D iffi cu lty s le ep in g iS u p p o rt In te rv e n ti o n M an u al MODULE 5 217 z Difficulty sleeping is common in people with dementia. z Sleeping problems can be very stressful to deal with. z If the person you care for is having difficulty sleeping, try to make them more comfortable. z Try to identify circumstances that may increase difficulty sleeping and change or address them. z When one approach doesn’t work, try another one. z Realize that there will be good and bad days. z Remind yourself that difficulty sleeping is part of the disease. z Take a deep breath and think about the best ways to respond that will be the least distressing for you and the person you care for in case of sleeping problems. z Ask for help. It is hard to provide good care on limited sleep. Let’s review what you have learned You finished this lesson, well done! Le ss on 5 . D iffi cu lty s le ep in g iS u p p o rt In te rv e n ti o n M an u al MODULE 5 218 iS u p p o rt In te rv e n ti o n M an u al Can you break down the cycle of behaviour change in this example into its three parts? What comes before the behaviour? Rosie is sent to bed as early as 20:00, so that the family can do activities together that Rosie does not like. Rosie has trouble falling asleep and continues to open and shut her dresser drawers noisily during the evening. This keeps Grace awake. What is the stressful behaviour? What does this mean for Grace? 1. Check your understanding Understanding sleeping difficulties. ANSWERS - DEALING WITH BEHAVIOUR CHANGES Lesson 5. Difficulty sleeping AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 5 iS u p p o rt In te rv e n ti o n M an u al MODULE 5 219 iS u p p o rt In te rv e n ti o n M an u al 9 ✓Go for a walk with Rosie and add more physical activity during the day. This is a good idea! Physical exercise during the day may help sleep at night. 8 Give her a pill to sleep. This is not a good idea. It can make someone with dementia even more confused or agitated and sleeping pills may become addictive. 9 Try to ensure that Rosie does not drink coffee or too much fluid a few hours before going to bed. This is a good response. Coffee, tea, or too much liquid can keep people awake, and cause frequent urination. 9 Make lunch the bigger meal of the day. This is helpful. A light dinner makes it easier to sleep. Rosie has trouble falling asleep 9 Limit daytime naps to 15 to 30 minutes. This might be a good idea. It addresses the need for sleep during the day, but it does not prevent Rosie from falling asleep later on. 9 Play soothing music before bedtime to help Rosie sleep. Good idea. Find relaxing activities before bed such as music, or reading to Rosie. Too much activity before bed can cause a person to be stimulated and stay awake. 9 Create a bedtime routine, like lowering the lights, washing face and teeth, and changing into pajamas. This is a good response because a routine will relax the person living with dementia. 9 Keep in mind that some people may require less sleep. Generally, 6 to 8 hours sleep from 20:00 means night waking between 2:00 to 4:00 in the morning. This is a good response. Select a normal sleeping time as much as possible. 2. Check your understanding Responding to sleeping difficulties. AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 5 iS u p p o rt In te rv e n ti o n M an u al MODULE 5 220 iS u p p o rt In te rv e n ti o n M an u al 9 Try to understand what will help Vani sleep. Some people prefer to keep the room dark with no television or as little noise as possible while others prefer a night light, soft music or a television playing. This answer is a good one. Each person is different and you may need to try several possible solutions before finding one that works. 9 Give Vani a favourite object to relax (e.g. blanket or stuffed animal). This response is a good one. It may help Vani feel relaxed and secure. What can Geeta do to keep Vani from wandering at 3:00 in the morning? 9 Schedule an appointment with the doctor to find out if there is a medical reason for her trouble sleeping (e.g. urinary tract infection, pain, medication causing hallucinations). While it is not necessary to seek medical attention every time that a person living with dementia can’t sleep, seek advice if it worries or upsets you or the person living with dementia. 9 Develop an activity schedule to keep Vani awake and busy during the day. This is a good idea. It may improve sleep at night. 3. Check your understanding Dealing with waking in the middle of the night (1). AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 5 iS u p p o rt In te rv e n ti o n M an u al MODULE 5 221 iS u p p o rt In te rv e n ti o n M an u al 9 Encourage physical exercise during the day (e.g. walking, stretching). This may be helpful to improve sleep at night. 8 Tell Vani that you won’t take care of her anymore if you are continuously woken up at night. This is not a good response. Keep in mind that dementia is a disease and someone with dementia will be dependent on the care that others provide. 9 Ask if Vani has to go to the bathroom or is hungry or thirsty. If she says “yes”, then just assist her to meet these needs. This is helpful. Such a break might help the person go back to sleep. 8 Physically take hold of Vani and put her back in bed. Never do this. Although it may be very difficult to deal with sleeping problems, respect the dignity of someone with dementia. Moreover, they may become agitated or angry. It definitely will not solve the sleeping problems. 9 Ask for help from a family member, friend or a paid professional. This might be helpful. Eventually, the lack of sleep can affect any family’s ability to provide care. Someone else can assist by giving the family member a night or a weekend off. AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 5 3. Check your understanding (continued) Dealing with waking in the middle of the night (1). iS u p p o rt In te rv e n ti o n M an u al MODULE 5 222 iS u p p o rt In te rv e n ti o n M an u al 9 Remind yourself to stay calm and focus on getting the person living with dementia to sleep. This way, you will use your energy to solve the sleeping problem, rather than reacting emotionally. Correct! 9 Gently remind the person that it is dark outside and it is time to sleep. If needed try to relax the person, for example by playing soothing music. Great idea! Which of the responses below would you choose if the person you care for experiences sleeping problems? 9 Read aloud to the person you care for. Choose something that you know has a calming effect, perhaps a poem or story. Sing a song or chant together. Another option is to pray or meditate for 15 minutes together. Good response! 9 Comfort the person living with dementia. Give them a stuffed animal and hug or hold them until they fall asleep. Great idea! 4. Check your understanding Dealing with waking in the middle of the night (2). AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 5 iS u p p o rt In te rv e n ti o n M an u al MODULE 5 223 Why is this lesson important? Unreal thoughts and seeing things that aren’t there (delusions and hallucinations) can be very upsetting to the person living with dementia and the carer. How will this lesson help me? This lesson will help you identify ways to stop or reduce delusions and hallucinations and how you might change the way that you respond to them. What will I learn? 1. Why do people with dementia have unreal thoughts and see or hear things that aren’t there? 2. How to stop or reduce delusions and hallucinations? Lesson 6. Delusions and hallucinations 1. Why do people with dementia have unreal thoughts and see or hear things that aren’t there? People with dementia may not understand the world around them because of changes in their brain. These misunderstandings are called delusions (unreal thoughts) and hallucinations (seeing or hearing things that are not there). A delusion is a fixed false belief. For example, the person may hold the false belief of being under threat or harm from the carer. To the person living with dementia the error in thinking is very real, causes fear and may result in distressing self- protective behaviours. If the person is experiencing a hallucination, they might see or hear things that are not there, for example, people talking in the room. People with dementia with these ideas need a lot of understanding and support from the person taking care of them. Le ss on 6 . D elu sio ns an d ha llu cin at io ns iS u p p o rt In te rv e n ti o n M an u al MODULE 5 224 Has the person you care for ever had any unreal thoughts or seen or heard things that were not there? You can describe them in the space below, like in a diary. 1. Activity Unreal thoughts or seeing/hearing things that are not there are common problems for some people with dementia. In this lesson, you will learn how to deal with them. Remember Le ss on 6 . D elu sio ns an d ha llu cin at io ns iS u p p o rt In te rv e n ti o n M an u al MODULE 5 225 What would you recommend Martin do? Please check all correct answers. „ Soothe her in a calm voice. „ Lead her away from the woman in the park. „ Directly tell the truth, harshly, to set the record straight. „ Argue with Betty that the young woman is not her sister. „ Say that the young woman in the park is someone who looks like her, but it is not her. „ Involve the woman in the park in any way. „ Try to ‘convince’ Betty of the truth. „ Say “Yes you are right, it is Susan”. „ Say “When we get home, you can look at pictures of Susan and remember her”. 1. Check your understanding Mistaking a person for someone else. 2. How to stop or reduce delusions and hallucinations? Let’s look at the following example Martin’s wife Betty is living with dementia. One day, Martin and Betty are out for a walk. They see a woman in the distance. Betty starts calling loudly “Susan, Susan, I’m over here”. Then she starts running towards a woman unknown to Martin; a young lady who is probably about 20 years old. Betty mistakenly believes that the young woman in the park is her sister who died in a car accident over 30 years ago. The young woman ignores her. Betty becomes very upset. Le ss on 6 . D elu sio ns an d ha llu cin at io ns iS u p p o rt In te rv e n ti o n M an u al MODULE 5 226 „ Soothe her father, by saying in a calm voice “You are safe, I am with you”. „ Soothe her father, by taking his hand and patting it. „ Check if there is anything in the environment that could be causing Larry's hallucination, such as shadows in the room from the sunlight. Make changes as necessary. „ Lead him away from the room. „ Say that it is simply not true, that there are no other people in the room. What would you recommend Mercedes do? Please check all correct answers. 2. Check your understanding Seeing people that are not there. Now let’s look at another example Mercedes’ father Larry is living with dementia. One day, Larry is a bit restless. Suddenly, he starts to look very frightened while staring at a corner in the room. He calls out to his daughter and says, “Do you see them talking?” He screams, “What are you doing there?” Mercedes is so overwhelmed that she feels like running away. She thinks to herself “Dad’s illness is much worse than I thought it was.” Check with the doctor regarding medication side effects that the person living with dementia is using. These may contribute to the problem. Tip Le ss on 6 . D elu sio ns an d ha llu cin at io ns iS u p p o rt In te rv e n ti o n M an u al MODULE 5 227 Let’s look at your own situation It is important to apply what you have learned to your own situation. Which one would you try first? Unreal or unusual thoughts do not happen all the time. What would you do if the person you care for experiences them? Try to describe different appropriate responses in the space below. 2. Activity Sometimes people with dementia have pleasant hallucinations, like seeing beautiful colours or children who are not there. If these visions are not causing the person distress then try to enjoy them together. Remember Le ss on 6 . D elu sio ns an d ha llu cin at io ns iS u p p o rt In te rv e n ti o n M an u al MODULE 5 228 z Unreal thoughts or seeing/hearing things that are not there (delusions and hallucinations) are common in people with dementia. z They can be very upsetting to the person living with dementia and the carer. z Often, people with these visions and unreal thoughts need a lot of reassurance. z It is important to identify ways to reduce them, not by arguing with the person you care for, but by comforting and distracting them. z Check the environment to see if there is a cause for the delusion or hallucination. z If one approach doesn’t work, try another one. z Remind yourself that unreal thoughts or visions are part of the disease. z Take a deep breath and think about the best ways to respond that will be the least distressing to you and the person you care for if they are experiencing unreal thoughts or visions. You finished this lesson, well done! Let’s review what you have learned Le ss on 6 . D elu sio ns an d ha llu cin at io ns iS u p p o rt In te rv e n ti o n M an u al MODULE 5 229 iS u p p o rt In te rv e n ti o n M an u al ANSWERS - DEALING WITH BEHAVIOUR CHANGES Lesson 6. Delusions and hallucinations 9 ✓Soothe her in a calm voice. This is a good response because people with delusions and hallucinations may feel frightened and insecure. 9 ✓Lead her away from the woman in the park. This is a good response because it will distract her from the young woman in the park. ✓ 8 Directly tell the truth, harshly, to set the record straight. This is not a good response as it may make Betty even more upset. ✓✓ 8 Argue with Betty that the young woman is not her sister. This is not a good response as it may make Betty even more upset. 9 Say that the young woman in the park is someone who looks like her, but it is not her. This is a good response because it maintains a positive social environment. 8 Involve the woman in the park in any way. This is not helpful because it may make the situation more complicated. 8 Try to ‘convince’ Betty of the truth. This is not a good response as Betty may not understand. 8 Say “Yes you are right, it is Susan”. This is not correct because it is not the truth. 9 Say “When we get home, you can look at pictures of Susan and remember her”. This is a good response because Martin addresses the importance of her sister, without arguing that the young woman Betty saw in the park was not her sister. 1. Check your understanding Mistaking a person for someone else. AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 6 iS u p p o rt In te rv e n ti o n M an u al MODULE 5 230 iS u p p o rt In te rv e n ti o n M an u al ANSWERS - DEALING WITH BEHAVIOUR CHANGES Lesson 6. Delusions and hallucinations 2. Check your understanding Seeing people that are not there. AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 6 9 Soothe him, by saying in a calm voice “You are safe, I am with you”. This is a good response because people with hallucinations are often feeling frightened and insecure. 9 Check if there is anything in the environment that could be causing his hallucinations, such as shadows in the room from the sunlight. Make changes as necessary. This is a good response because although a person’s brain may be misinterpreting the environment there could still be a reasonable cause for confusion. 9 Lead him away from the room. This is a good response because changing the environment may distract her father and end the hallucination. 8 Say that it is simply not true, that there are no other people in the room. This is not a good response because arguing about what one sees or hears will not help a person experiencing delusions or hallucinations to calm down. iS u p p o rt In te rv e n ti o n M an u al MODULE 5 231 Why is this lesson important? If a person living with dementia repeats things over and over it can be stressful for themselves and the carer. We will refer to this as a ‘repetitive behaviour’. How will this lesson help me? This lesson will help you understand why repetitive behaviours occur, and how to respond to, and reduce, them. What will I learn? 1. What is repetitive behaviour? 2. How to comfort a person living with dementia in case of repetitive behaviours? Lesson 7. Repetitive behaviour 1. What is repetitive behaviour? A person living with dementia may forget what they have said, heard or did from one moment to the next, leading to repeated questions and actions. Usually doing things over and over is not harmful to the person living with dementia, if the carer knows how to deal with it. If not, the person living with dementia can become anxious, aggressive or depressed and the carer can become stressed. As a result, carers may respond inappropriately, for example by screaming, which often makes the person with dementia feel guilty. Le ss on 7 . R ep et iti ve b eh av io ur iS u p p o rt In te rv e n ti o n M an u al MODULE 5 232 Let’s look at your own situation Does the person you care for ever do or say things over and over again? What behaviour(s) do they repeat? You can describe them in the space below, like a diary. 1. Activity Le ss on 7 . R ep et iti ve b eh av io ur iS u p p o rt In te rv e n ti o n M an u al MODULE 5 233 What would you recommend to John? Please select all correct responses. „ Say “What’s wrong with you? Can’t you remember? We just had lunch!” „ Stay calm and reassure his father that his wife will be home soon. „ Engage his father in an activity. „ Write down the answers to his questions, for example where his wife is and when she is expected to return. „ Walk away. „ Accept the repetitive questions. If it isn’t harmful, let it be. Find ways to adapt. „ Offer his father a snack or a drink. 1. Check your understanding Repeating questions. Let’s look at this example John is taking care of his father Joe, because his mother, the main carer, is out of the house for a few hours. All seems fine, although John notices that his father is rather tense because John’s mother is not there. John and Joe eat lunch together. Sometime after finishing lunch, Joe asks “When is lunch?” and, “What are we having for lunch?” John does not think much of it at first. Then, again, a few minutes later, Joe asks “When is lunch?”, “What are we having for lunch?”, and “Where is your mother?” Joe repeats these questions again and again. John is confused about why Joe is doing this and gets more and more worried about his father. John continues to answer the questions, but gets a bit upset and raises his voice. John responds, loudly and is annoyed, “I have already answered these questions, why do you keep asking?” 2. How to comfort a person living with dementia in case of repetitive behaviours? Le ss on 7 . R ep et iti ve b eh av io ur iS u p p o rt In te rv e n ti o n M an u al MODULE 5 234 Let’s look at your own situation It is important to apply what you have learned to your own situation. The spaces below are for you, like a diary. Now look back at the examples that you identified in the previous activity. Choose the repetitive behaviour that is the most stressful to the person that you care for, or to yourself, and list it below. What could you do to help reduce this behaviour? How could you change your response to this behaviour? 2. Activity Le ss on 7 . R ep et iti ve b eh av io ur iS u p p o rt In te rv e n ti o n M an u al MODULE 5 235 z Doing or saying things over and over again (repetitive behaviour) is common in people with dementia. z Repetition can be very stressful to deal with. z In case of repetition, try to focus on comforting the person you care for. z Try to identify what comes before the repetitive behaviour and what may increase it. Then try to change it. Try to identify how you respond and change that also. z Realize there may be worse, but also better moments. z Remind yourself that repetitive behaviours are part of the disease. z Take a deep breath and think about the best ways to respond that will be the least distressing to you and the person living with dementia if they do or say things over and over again. You finished this lesson, well done! Let’s review what you have learned Le ss on 7 . R ep et iti ve b eh av io ur iS u p p o rt In te rv e n ti o n M an u al MODULE 5 236 iS u p p o rt In te rv e n ti o n M an u al 8 Say “What’s wrong with you? Can’t you remember? We just had lunch!” This is not a good response because John is blaming his father for something that he can’t help. 9 Stay calm and reassure his father that his wife will be home soon. This is a good response as repetition might worsen due to Joe’s feelings of insecurity. He seems to feel insecure because his wife went out. By reassuring Joe that his wife will come back soon, the repetition may lessen or stop. 9 Engage his father in an activity. This can be a good response because it may distract his father and offer something else to see, hear or do. 9 Write down the answers to his questions, for example where his wife is and when she is expected to return. This might work well, may reassure Joe and stop him from asking again. 8 Walk away. This response is not so good because it will only upset his father more. 9 Accept the repetitive questions. If it isn’t harmful, let it be. Find ways to adapt. This can be a good response. Perhaps if it is just repetitive questioning, by remaining calm the behaviour may decrease. 9 Offer his father a snack or a drink. This might be a good response. Perhaps Joe is still hungry or thirsty. It may help to calm him and meet his need. 1. Check your understanding Repeating questions. ANSWERS - DEALING WITH BEHAVIOUR CHANGES Lesson 7. Repetitive behaviours AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 7 iS u p p o rt In te rv e n ti o n M an u al MODULE 5 237 Why is this lesson important? Concerns about walking and getting lost can cause distress. Carers like you may worry whether the person will get lost. How will this lesson help me? This lesson will help you understand the reasons for walking and what to do to reduce the chances of the person living with dementia getting lost. What will I learn? 1. Why is walking a concern? 2. Why a person with dementia might want to walk around? 3. How can I manage habits and reduce the chances that the person I care for gets lost? Lesson 8. Walking and getting lost 1. Why is walking a concern? People with dementia may have the habit of walking around the home or leaving the house and wanting to walk around the neighbourhood, this is also called wandering. This is very common. However, they may get lost. So, safety is a primary concern when people with dementia are out alone. It is important to prevent wandering. This lesson will teach you why people with dementia may have a desire to walk. You will also learn about the steps that you can take to help make this safer. It is important to find ways to help prevent people with dementia from getting lost or ending up in an unsafe situation. Le ss on 8 . W al ki ng an d ge tti ng lo st iS u p p o rt In te rv e n ti o n M an u al MODULE 5 238 Does the person you care for sometimes walk around or walk away? You can describe what happens in the space below, like in a diary. 1. Activity 2. Why a person with dementia might want to walk around? A person with dementia who wanders or walks away may be: z Wanting to exercise. z Continuing a lifelong habit of walking regularly. z Relieving boredom due to not being sufficiently stimulated. z Using up energy from sitting all day. z Relieving pain and discomfort from joint pain or stiffness. z Responding to stress or anxiety. z Feeling lost or uncertain about their surroundings. z Going out and forgetting where they were going. z Searching for someone or something in the past or present. z Seeking fulfilment and purpose such as the desire to go to work. z Getting confused about the time. Le ss on 8 . W al ki ng an d ge tti ng lo st iS u p p o rt In te rv e n ti o n M an u al MODULE 5 239 There are certain things that may help manage a person’s walking habits and prevent them from getting lost. For example, try to: 3. How can I manage habits and reduce the chances that the person I care for gets lost? z Make sure that the person carries some form of identification. z Make sure that your home is secure, that the person is safe in your home and cannot leave without you knowing. For example, camouflaging doors and door knobs may help, or using a bell or curtain that makes noise when someone uses the door. z Keep an up-to-date photograph in case the person you care for gets lost and you must ask for help from others. z After the person you care for is found, speak calmly, with acceptance and love, try to avoid blaming and showing anger. z Keep to the routines and activities of the person you care for. Identify the most likely times of the day that their walking may occur and plan activities such as a walk in the park together at that time. z Reassure the person you care for if they feel lost, abandoned or disoriented, or want to leave to “go home" or “go to work". For example, try saying: “we are staying here tonight. We are safe and I'll be with you. We can go home in the morning after a good night's rest." Try to refrain from correcting the person living with dementia. z Ensure that all basic needs are met. Has the person gone to the bathroom? Are they thirsty or hungry? z Avoid busy places that are confusing and can cause disorientation, such as shopping malls, markets, grocery stores or other crowded places. Le ss on 8 . W al ki ng an d ge tti ng lo st iS u p p o rt In te rv e n ti o n M an u al MODULE 5 240 Let’s look at an example Amit has dementia and is supported by his wife, Samia. Samia is cooking dinner when she hears Amit heading for the door. She knows that he likes to go for afternoon walks, but now is not a good time since she is cooking. What would you recommend to Samia? Please select all correct responses. „ Yell to Amit from the kitchen, “please stop! I can’t come with you now.” „ Turn the cooker off and follow Amit. „ Forbid Amit to leave and pull him back into the house. „ Go to where Amit is standing by the door and calmly say: “let’s eat dinner first and we’ll go for a walk later.” „ Lock the door so that Amit cannot leave. „ Let Amit leave and call a neighbour to keep an eye out for him. „ Ask another family member to go for a walk with him. „ Ask Amit to help with a task in the kitchen. „ Schedule more afternoon walks before dinner. 1. Check your understanding Dealing with walking away. Le ss on 8 . W al ki ng an d ge tti ng lo st iS u p p o rt In te rv e n ti o n M an u al MODULE 5 241 Let’s look at your own situation It is important to apply what you have learned to your own situation. The spaces below are for you, like a diary. What are the possible reasons why the person you care for may have the desire to walk? Please select all answers that apply. Based on the reasons that you selected, how might you react or respond the next time the person you care for wants to go outside or walk? 2.1. What could you do to help the person enjoy walking in a safe way? Take a moment to summarize the points that you have learned in this lesson, which will help you going forward: „ Wanting to exercise. „ Continuing a lifelong habit of walking regularly. „ Relieving boredom due to not being sufficiently stimulated. „ Using up energy from sitting all day. „ Relieving pain and discomfort from joint pain or stiffness. „ Responding to stress or anxiety. „ Feeling lost or uncertain about their surroundings. „ Going out and forgetting where they were going. „ Searching for someone or something in the past or present. „ Seeking fulfilment and purpose such as the desire to go to work. „ Getting confused about the time „ Other (please state): 2. Activity Le ss on 8 . W al ki ng an d ge tti ng lo st iS u p p o rt In te rv e n ti o n M an u al MODULE 5 242 z Walking around or walking away is common. z Walking can be healthy exercise, reduce boredom, and be a common habit or routine of the person. z Walking away or walking alone might be a safety risk. z Concerns about walking and getting lost can be very upsetting to the person living with dementia and the carer. z It is important to identify possible reasons for walking around or walking away. z How you respond to the desire to walk should be based on the possible reasons for it. z If one approach doesn’t work, try another one. z Realize that there may be worse, but also better moments. z Take a deep breath and think about the best ways to respond that will be the least distressing to you and the person living with dementia. If you want to know more about how to plan an enjoyable day, please refer to the Lesson 5. An enjoyable day in Module 4. You finished this lesson, well done! Let’s review what you have learned Le ss on 8 . W al ki ng an d ge tti ng lo st iS u p p o rt In te rv e n ti o n M an u al MODULE 5 243 iS u p p o rt In te rv e n ti o n M an u al Relaxation exercise - Neck movements AN SW ER S - D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 8 ANSWERS - DEALING WITH BEHAVIOUR CHANGES Lesson 8. Walking and getting lost 8 Yell to Amit from the kitchen, “please stop! I can’t come with you now.” This is not a good response because yelling at Amit from the kitchen may confuse and agitate him. It may also not stop him from going out on his own. 9 Turn the cooker off and follow Amit. This is a good response if there are no other alternatives. 8 Forbid Amit to leave and pull him back into the house. This is not a good response because Amit may get agitated and resist being pulled which could result in Amit or Samia being harmed. 9 Go to where Amit is standing by the door and calmly say: “Let’s eat dinner first and we’ll go for a walk later.” This is a good response because Samia stays calm, does not yell, and honors Amit’s wishes by telling him that they will go together after dinner. 9 Lock the door so that Amit cannot leave. This is a good response if no other options exist and Samia is in the house with Amit. For fire safety reasons, a person living with dementia who requires supervision should never be locked inside a house without another person there. 9 Let Amit leave and call a neighbour to keep an eye out for him. This is a good option if Samia has prearranged with the neighbours to keep an eye out for him. If Amit is in the very early stages of dementia, he may be okay while going out on his own to places that are familiar to him. 9 Ask another family member to go for a walk with him. This is a good option. Samia can finish cooking dinner and Amit can enjoy a nice walk before dinner. 1. Check your understanding Dealing with walking away. iS u p p o rt In te rv e n ti o n M an u al MODULE 5 244 iS u p p o rt In te rv e n ti o n M an u al Relaxation exercise - Neck movements AN SW ER S - D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 8 9 Ask Amit to help with a task in the kitchen. This is a good response because it involves distracting Amit from going for a walk alone and gives him purpose and keeps him occupied. 9 Schedule more afternoon walks before dinner. This is a good response because planning ahead will prevent Samia from being interrupted when cooking dinner to assist Amit. It may also help Amit to release some energy and come home to relax before dinner. 1. Check your understanding (continued) Dealing with walking away. iS u p p o rt In te rv e n ti o n M an u al MODULE 5 245 Why is this lesson important? Changes in judgement can be upsetting to the person living with dementia and the carer. How will this lesson help me? This lesson will help you understand the reasons causing changes in judgement and teach you skills to manage this. What will I learn? 1. What are changes in judgement? 2. How can you manage changes in judgement? 3. What to do if the changes in judgement are more serious? Lesson 9. Changes in judgement 1. What are changes in judgement? Changes in judgement may include saying the wrong thing at the wrong time, acting inappropriately in a situation, or not understanding one’s own limitations. Usually these actions are not harmful, but they can be stressful or embarrassing for the person living with dementia or the carer. People with dementia are often looking for guidance or reassurance. Le ss on 9 . C ha ng es in ju dg em en t iS u p p o rt In te rv e n ti o n M an u al MODULE 5 246 Did you ever notice that the person you care for sometimes has a change in their judgement? If so, what did you observe? Please describe this in the space below. How did it affect you as the carer? 1. Activity Tip Changes in judgement will increase as dementia progresses. In this lesson you can practice several ways of responding to changes in judgement and find out what may help. Le ss on 9 . C ha ng es in ju dg em en t iS u p p o rt In te rv e n ti o n M an u al MODULE 5 247 2. How can you manage changes in judgement? Let’s go through an example Ivan is in town visiting his aunt Isabel who has dementia. They are on their way to a restaurant for dinner. In order to get there, Ivan decides to hail a taxi. All of a sudden, the car pulls up alongside Isabel and startles her. Isabel, who is normally a very gentle woman, starts scolding the taxi driver. What would you recommend to Ivan to help him deal with this situation? Please select all correct responses. „ Put his hand on Isabel’s mouth in order to stop her scolding the driver. „ Walk Isabel back to her apartment and leave because what happened is embarrassing. „ Stay calm and reassure Isabel everything is alright. „ Accept the behaviour. If the taxi driver doesn’t seem to notice, let it be. Find ways to adapt. „ Ivan could carry a business card that explains, ‘My companion has dementia, please be patient with us.’ and give this card to the taxi driver. 1. Check your understanding Managing changes in judgement. Le ss on 9 . C ha ng es in ju dg em en t iS u p p o rt In te rv e n ti o n M an u al MODULE 5 248 3. What to do if changes in judgement are more serious? The last example was a brief and one-time experience for Ivan. However, what happens if the changes in judgement experienced by a person living with dementia are more serious? Here are three examples to help you learn how to react. Mishandling finances Sophie has dementia and lives alone. Her cousin Julia has come to visit her. Despite the fact that Sophie has always been organised, Julia arrives to find that there is a large pile of unopened mail on the kitchen table. Julia wonders if Sophie has had some trouble paying her bills. She asks Sophie about her finances. Sophie cannot remember whether she has paid her bills or not, does not know when they are due, and cannot recall how much money she has in her bank account. Julia becomes quite concerned. What would you recommend to Julia? Please select all correct responses. „ Stay calm and call Sophie’s daughter. „ Go to the bank and ask for control of Sophie’s finances. „ Leave because she feels uneasy. „ Ask Sophie if she would like some help in opening her mail. „ ✓Try to find out whether Sophie has someone who handles her finances, like a family member or a professional. 2. Check your understanding Managing more serious changes in judgement (1). Le ss on 9 . C ha ng es in ju dg em en t iS u p p o rt In te rv e n ti o n M an u al MODULE 5 249 Insisting on driving Hugo is living with dementia. His neighbour, Pablo, notices that his car is parked very strangely one day, obstructing some of the other cars on the street. Pablo walks out of his apartment, sees Hugo and attempts to start a conversation. Instead of stopping, Hugo jumps in his car, speeds off and takes an illegal left turn out of the compound. Hugo returns quickly and nothing bad seems to have happened. What would you recommend to Pablo? Please select all correct responses. „ Immediately seize Hugo’s car keys when he returns. This will prevent it from happening again. „ Stay calm and ask whether Hugo has any other places to go that day, and if so, offer him a ride. „ Ignore the situation because it is embarrassing. „ Ask Hugo if he would like some help figuring out transportation. „ Tell Hugo that he is concerned about his driving and suggest visiting his doctor to discuss it. „ Report the incident to Hugo’s carer, friend or family member. 3. Check your understanding Managing more serious changes in judgement (2). It is better if the decision not to drive comes from the person living with dementia. Giving up driving is typically a difficult time in the person’s life where they are losing independence. Alternatives such as offering regular rides, teaching the person how to use public transportation or arranging taxis will help the person stay active and involved in their community activities. It is important that the person does not become isolated or lonely once they give up driving. More effort will be needed to keep them connected to the world outside their home. Tip Le ss on 9 . C ha ng es in ju dg em en t iS u p p o rt In te rv e n ti o n M an u al MODULE 5 250 Inappropriate sexual advances Mateo is in his late 70s, has dementia and lives with his family. Two days a week, an in-home aide, Camila, who is 22 years old, comes to help him take a bath and administer his medication. This arrangement has been working well for several months. One day, while preparing for his bath, Mateo makes some sexual remarks and tries to pull Camila close to him. Camila is shocked and surprised. She runs out of the room and tells the family that she can no longer work there. If the inappropriate advances continue, the family might want to consider hiring a male in-home aide instead of a female one which could prevent this behaviour. They also might seek help from a professional. Tip What would you recommend to Mateo’s family? Please select all correct responses. „ Stay calm and tell Mateo that this behaviour is unacceptable. Explain who Camila is. „ Change the bathing situation. Perhaps Camila can set up a sponge bath and Mateo can do more himself. „ Change the environment. Put a towel or robe over Mateo’s shoulders while he is being bathed to keep him covered for privacy. „ Shout at Mateo, shaming him for his conduct. „ Ignore the situation. 4. Check your understanding Managing more serious changes in judgement (3). Le ss on 9 . C ha ng es in ju dg em en t iS u p p o rt In te rv e n ti o n M an u al MODULE 5 251 Let’s look at your own situation It is important to apply what you have learned to your own situation. Earlier, we asked whether the person you care for sometimes shows changes in judgement. After going through these examples, think again about your own situation. The spaces below are for you, like a diary. Does the person living with dementia sometimes show changes in judgement? In what way could you respond? Take a moment to summarize the points that you have learned, which will help you deal with changes in judgment in the future. 2. Activity Changes in judgement may hamper decision-making. If you want to know more, review Lesson 3. Supported decision-making in Module 2. Remember Le ss on 9 . C ha ng es in ju dg em en t iS u p p o rt In te rv e n ti o n M an u al MODULE 5 252 z Changes in judgement usually increase as dementia progresses. z Changes in judgement can be very upsetting for the person living with dementia and the carer. z It is important to reduce or prevent changes in judgement, whenever possible. z Realize that there may be good and bad days. z Remind yourself that this is a part of the disease. z Take a deep breath and think about the best ways to respond that will be the least distressing to you and the person you care for. z Plan for increasing levels of changes in judgement. You finished this lesson, well done! Let’s review what you have learned Le ss on 9 . C ha ng es in ju dg em en t iS u p p o rt In te rv e n ti o n M an u al MODULE 5 253 iS u p p o rt In te rv e n ti o n M an u al 8 ✓Put his hand on Isabel’s mouth in order to stop her scolding the driver. This response is not good because it may even worsen the situation and cause Isabel further agitation. ✓ 8 Walk Isabel back to her apartment and leave because what happened is embarrassing. This response is not good because Isabel may feel bad and isolated. 9 ✓Stay calm and reassure Isabel everything is alright. This is a good response because it shows Ivan cares about Isabel. It may stop her from scolding the taxi driver and make her feel more relaxed. What would you recommend to Ivan? 9 ✓Accept the behaviour. If the taxi driver doesn’t seem to notice, let it be. Find ways to adapt. This can be an appropriate response if the behaviour is not harming anyone. 9 Ivan could carry a business card that explains, ‘My companion has dementia, please be patient with us.’ and give this card to the taxi driver. This is a good response because it relieves Ivan from explaining the situation to the taxi driver which may embarrass Isabel. 1. Check your understanding Managing changes in judgement. ANSWERS - DEALING WITH BEHAVIOUR CHANGES Lesson 9. Changes in judgement AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 9 iS u p p o rt In te rv e n ti o n M an u al MODULE 5 254 iS u p p o rt In te rv e n ti o n M an u al 9 Stay calm and call Sophie’s daughter. This response is good because Julia shares her worries with Sophie’s closest relative, her daughter, who might know more and can arrange help if needed. 8 Go to the bank and ask for control of Sophie’s finances. This is not appropriate because it is Sophie’s decision to appoint a person that she is comfortable with to help manage her finances. 8 Leave because she feels uneasy. This response is not appropriate. If Sophie has problems dealing with her finances, letting the situation continue could make things worse. What would you recommend to Julia? 9 Ask Sophie if she would like some help with opening her mail. This response is good because Sophie may be able to pay her bills if given the right prompts, such as opening the bills in front of her and cueing her to pay one at a time. 9 Try to find out whether Sophie has someone who handles her finances, like a family member or a professional. This is a good response because Sophie may be at the point in her illness where she is no longer able to handle the finances on her own. If it seems that she is not getting any help with handling her finances, Julia may want to call her daughter to share her worries. 2. Check your understanding Managing more serious changes in judgement (1). ANSWERS - DEALING WITH BEHAVIOUR CHANGES Lesson 9. Changes in judgement AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 9 iS u p p o rt In te rv e n ti o n M an u al MODULE 5 255 iS u p p o rt In te rv e n ti o n M an u al 8 Immediately seize Hugo’s car keys when he returns because this will prevent it from happening again. This is not a good response because Pablo cannot decide whether his neighbour should drive anymore, and Hugo may become angry. 9 Stay calm and ask whether Hugo has any other places to go that day, and if so, offer him a ride. This is a good response because it prevents Hugo from driving unsafely and provides safe transportation, so Hugo can run his errands. 8 Ignore the situation because it is embarrassing. This response is not good because Hugo’s driving may cause harm to himself and others. What would you recommend to Pablo? 9 Ask Hugo if he would like some help figuring out transportation. This response is appropriate because Hugo may be able to safely ride a bus or walk, preventing any unsafe behaviour. 9 Tell Hugo that he is concerned about his driving and suggest visiting his doctor to discuss it. This is a good response as Pablo respects Hugo by being honest and raising a concern. 9 Report the incident to Pablo’s carer, friend or family member. This is a possible response. Pablo may not know if Hugo has dementia and could be concerned about the risk of harm to Hugo and others. 3. Check your understanding Managing more serious changes in judgement (2). AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 9 iS u p p o rt In te rv e n ti o n M an u al MODULE 5 256 iS u p p o rt In te rv e n ti o n M an u al 9 Stay calm and tell Mateo that this behaviour is unacceptable. Explain who Camila is. This option is a good one. Mateo’s family does not overreact because they remember it is the disease taking effect. They redefine the appropriate boundaries for Camila’s safety. 9 Change the bathing situation. Perhaps Camila can set up a sponge bath and Mateo can do more himself. This is a good option. Letting Mateo do more himself will distract him. In this way, both Camila and Mateo’s dignity are maintained. What would you recommend to Mateo’s family? 9 Change the environment. Put a towel or robe over Mateo’s shoulders while he is being bathed to keep him covered for privacy. This is a good response. Perhaps because Mateo is naked, he misunderstands the situation. 8 Shout at Mateo, shaming him for his conduct. This response is not good because as part of his dementia Mateo may not know that these advances are inappropriate. Therefore, try not to overreact. 8 Ignore the situation. This response is not good because Mateo may continue to make inappropriate sexual advances and cause distress to Camila. 4. Check your understanding Managing more serious changes in judgement (3). AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 9 iS u p p o rt In te rv e n ti o n M an u al MODULE 5 257 Why is this lesson important? Certain changes in behaviour can be particularly stressful for the person living with dementia and the carer. How will this lesson help me? This lesson will summarize ways to prevent, reduce or manage behaviour changes. What will I learn? 1. The most important things to keep in mind when dealing with challenging behaviours. 2. Practical tips on not blaming yourself, sharing your feelings with others and making time for yourself. Lesson 10. Putting it all together 1. The most important things to keep in mind when dealing with behaviour changes z Behaviour changes can be stressful for the person you care for and yourself. This is quite common. z Try to make the person you care for feel more comfortable. z Look for ways to prevent or reduce behaviour changes that are stressful, for example by using memory aids. z Try to distract the person you care for, don’t argue. z When one approach does not work, try another one. z Realize that there may be good and bad days. z Consult a medical doctor to identify any causes related to medication or illness. z Identify whether the environment or your approach could be causing the particular symptom. z Remind yourself that behaviour changes are part of the disease but other possible causes should be identified before accepting the disease as a cause. Le ss on 1 0. P ut tin g it al l t og et he r iS u p p o rt In te rv e n ti o n M an u al MODULE 5 258 2. Practical tips on not blaming yourself, sharing your feelings with others and making time for yourself Here are some tips from related lessons. If you did not take these lessons yet, you can complete them after finishing this one. z Don’t blame yourself or the person living with dementia for the problems that you encounter. If you want to work on ways to manage your feelings, take a look at the last page of Lesson 3. Thinking differently in Module 3. z Share your feelings about your experiences as a carer with others. If you keep them to yourself it may be more difficult for you to look after your family member or friend. If you want to learn more about involving others, take a look at Lesson 4. Involving others in Module 2. z It is essential that you make time for yourself. This will allow you to do the things that you value in life, such as spending time with others or enjoying your favourite hobbies. If you want to learn more about doing pleasant activities, take a look at Lesson 2. Making time for pleasant activities in Module 3. You finished this lesson, well done! Le ss on 1 0. P ut tin g it al l t og et he r

Worldwide, carers of people with dementia should have access to information and support in order to effectively respond to, and manage, the physical, mental and social demands associated with caring for someone living with dementia. This iSupport manual has been developed to provide accessible, evidence-based training and information, tailored to carers’ needs. It aims to improve knowledge and caregiving skills, such as carers’ ability to cope with dementia symptoms and care for themselves. iSupport is also available online and can be accessed at www.isupportfordementia.org/en. For further information, please contact: Department of Mental Health and Substance Abuse World Health Organization Avenue Appia 20 CH-1211 Geneva 27 Switzerland Email: whodementia@who.int Wesbite: www.who.int/mental_health/neurology/dementia/en ISBN: 9789241515863

iSupport For Dementia Training and support manual for carers of people with dementia iS u p p o rt In te rv e n ti o n M an u al iSupport For Dementia Training and support manual for carers of people with dementia © World Health Organization 2019 Some rights reserved. This work is available under the Creative Commons Attribution-NonCommercial-ShareAlike 3.0 IGO licence (CC BY-NC-SA 3.0 IGO; https://creativecommons.org/licenses/by-nc-sa/3.0/ igo). Under the terms of this licence, you may copy, redistribute and adapt the work for non-commercial purposes, provided the work is appropriately cited, as indicated below. In any use of this work, there should be no suggestion that WHO endorses any specific organization, products or services. The use of the WHO logo is not permitted. If you adapt the work, then you must license your work under the same or equivalent Creative Commons licence. If you create a translation of this work, you should add the following disclaimer along with the suggested citation: “This translation was not created by the World Health Organization (WHO). WHO is not responsible for the content or accuracy of this translation. The original English edition shall be the binding and authentic edition”. Any mediation relating to disputes arising under the licence shall be conducted in accordance with the mediation rules of the World Intellectual Property Organization. Suggested citation. iSupport for dementia. Training and support manual for carers of people with dementia. Geneva: World Health Organization; 2019. Licence: CC BY-NC-SA 3.0 IGO. Cataloguing-in-Publication (CIP) data. CIP data are available at http://apps.who.int/iris. Sales, rights and licensing. To purchase WHO publications, see http://apps.who.int/bookorders. To submit requests for commercial use and queries on rights and licensing, see http://www.who.int/about/ licensing. Third-party materials. If you wish to reuse material from this work that is attributed to a third party, such as tables, figures or images, it is your responsibility to determine whether permission is needed for that reuse and to obtain permission from the copyright holder. The risk of claims resulting from infringement of any third-party-owned component in the work rests solely with the user. General disclaimers. The designations employed and the presentation of the material in this publication do not imply the expression of any opinion whatsoever on the part of WHO concerning the legal status of any country, territory, city or area or of its authorities, or concerning the delimitation of its frontiers or boundaries. Dotted and dashed lines on maps represent approximate border lines for which there may not yet be full agreement. The mention of specific companies or of certain manufacturers’ products does not imply that they are endorsed or recommended by WHO in preference to others of a similar nature that are not mentioned. Errors and omissions excepted, the names of proprietary products are distinguished by initial capital letters. All reasonable precautions have been taken by WHO to verify the information contained in this publication. However, the published material is being distributed without warranty of any kind, either expressed or implied. The responsibility for the interpretation and use of the material lies with the reader. In no event shall WHO be liable for damages arising from its use. iSupport for dementia. Training and support manual for carers of people with dementia ISBN 978-92-4-151586-3 Layout by Van Cleef Emnacen CONTENTS Module 1. Introduction to dementia 1 Module 2. Being a carer 11 Lesson 1. The journey together 12 Lesson 2. Improving communication 24 Lesson 3. Supported decision-making 42 Lesson 4. Involving others 57 Module 3. Caring for me 69 Lesson 1. Reducing stress in everyday life 70 Lesson 2. Making time for pleasant activities 82 Lesson 3. Thinking differently 92 Module 4. Providing everyday care 107 Lesson 1. Eating and drinking - more pleasant mealtimes 108 Lesson 2. Eating, drinking and preventing health problems 121 Lesson 3. Toileting and continence care 128 Lesson 4. Personal care 140 Lesson 5. An enjoyable day 152 Module 5. Dealing with behaviour changes 165 Lesson 1. Introduction to behaviour changes 166 Lesson 2. Memory loss 177 Lesson 3. Aggression 187 Lesson 4. Depression, anxiety and apathy 201 Lesson 5. Difficulty sleeping 210 Lesson 6. Delusions and hallucinations 223 Lesson 7. Repetitive behaviour 231 Lesson 8. Walking and getting lost 237 Lesson 9. Changes in judgement 245 Lesson 10. Putting it all together 257 ACKNOWLEDGEMENTS i PREFACE iii USER GUIDE iv iS u p p o rt In te rv e n ti o n M an u al i Technical Reviewers and Advisors Emiliano Albanese, WHO Collaborating Center for Training and Research in Mental Health, University of Geneva, Switzerland; Nicole Batsch, Alzheimer’s Disease International, London, UK; Upasana Baruah, National Institute of Mental Health and Neurosciences, Bangalore, India; Kiki Edwards, Rossetti Care, Ibadan, Nigeria; Kieren Egan, WHO Collaborating Center for Training and Research in Mental Health, University of Geneva, Switzerland; Mariella Guerra, Instituto de la Memoria, Lima, Peru; Jayna Holroyd-Leduc, University of Calgary, Canada; Timothy Kwok, Jockey Club Centre for Positive Ageing, The Chinese University of Hong Kong, Hong Kong; Marleen Prins, WHO Collaborating Centre for Dissemination of Good Practices in Mental Health, Trimbos-Institute, Utrecht, Netherlands; Santosh Loganathan, National Institute of Mental Health and Neurosciences, Bangalore, India; Prafulla Shivakumar, National Institute of Mental Health and Neurosciences, Bangalore, India; Iris van Asch, WHO Collaborating Centre for Dissemination of Good Practices in Mental Health, Trimbos-Institute, Utrecht, Netherlands; Mathew Varghese, National Institute of Mental Health and Neurosciences, Bangalore, Vision, conceptualization and project management Tarun Dua, Anne Margriet Pot (project manager), Shekhar Saxena, Diana Zandi. Project coordination and editing The team that coordinated the development of the manual, including writing and editing, was comprised of Neerja Chowdhary, Stéfanie Fréel, Anne Margriet Pot and Katrin Seeher. Contribution Valuable help and advice was received from many organizations, experts, people with dementia, and carers who have contributed to the development of iSupport, including but not limited to those mentioned below. Key Contributions Dolores Gallagher-Thompson, Stanford University, Stanford, USA; Kala Mehta, Stanford University, Stanford, USA; Bernadette Willemse, WHO Collaborating Centre for Dissemination of Good Practices in Mental Health, Trimbos-Institute, Utrecht, Netherlands; Lilly Xiao, Flinders University, Adelaide, Australia. ACKNOWLEDGEMENTS AC KN OW LE DG EM EN TS iS u p p o rt In te rv e n ti o n M an u al ii India; Huali Wang, Dementia Care & Research Center, Peking University Institute of Mental Health, Beijing, China; Marc Wortmann, Marc Wortmann Consulting. WHO Staff, Consultants and Interns Alison Brunier, Kenneth Carswell, Emma Cradock, Sophie D’Souza, Melissa Harper Shehadeh, Marije Kaat, Dévora Kestel, Neha Kinariwalla, Annet Kleiboer, Harleen Rai, Dag Rekve, Hiral Shah, Mark van Ommeren, Shuo Wang. Administrative Support Caroline Herment, Jacqueline Lashley, Adeline Loo, Ophel Riano. Production Team Development (web version): Iris Rosier, Kirsten van der Werff, Katherina Martin Abello, WHO Collaborating Centre for Dissemination of Good Practices in Mental Health, Trimbos-Institute, Utrecht, Netherlands, in collaboration with; Deepak Bhikharie, Edi Recica, Kees Schouten, Aan Zee, Noordwijk aan zee, Netherlands. Illustrations: Janet van der Werff, Drachten, Netherlands. Graphic design and layout (iSupport manual): Van Cleef Emnacen, Philippines. Editing: Harriet Payne, Alzheimer’s Disease International, London, U.K. Financial Support WHO would like to thank the following countries/agencies for supporting the development and production of iSupport: Alzheimer’s Association, U.S.A.; and, the Ministry of Health, Welfare and Sport, Netherlands. Neither of them are individually responsible in any way for the content, functioning of, or views displayed on iSupport. AC KN OW LE DG EM EN TS iS u p p o rt In te rv e n ti o n M an u al iii Being a carer for someone with dementia may affect one’s physical and mental health, well-being, and social relationships. Long- term care systems must account for the significant emotional, financial and social impact of caregiving on families and relatives, while addressing the needs of people with dementia. This includes providing carers with access to education, skills training, respite and social support through affordable, evidence-based resources. To address this need, the World Health Organization (WHO) has developed iSupport, an online skills training and support programme for carers of people with dementia. This iSupport manual allows carers who do not have access to the internet, or who prefer a manual, to benefit from the tool. The iSupport online programme and manual are currently being field-tested. It is our hope that the programme will be adapted by, and implemented in, many countries around the world. Dévora Kestel Director, Department of Mental Health and Substance Abuse Dementia is a major cause of impairement that affects a person’s memory, thinking and behaviour, and interferes with one’s ability to perform daily activities. It affects people worldwide, in particular older people. Globally, families provide the majority of care to people with dementia. The impact of dementia is significant to the individual who lives with dementia, their families, societies and countries, both in financial terms and human costs. The Global action plan on the public health response to dementia 2017-2025 represents an important step forward in achieving physical, mental and social wellbeing for people with dementia, their carers and families. It is an opportunity for individuals, communities and countries to realize the vision of a world in which dementia is prevented and people with dementia and their carers receive the care and support they need to fulfil their potential with dignity, respect, autonomy and equality. P R E FA C E PR EF AC E PREFACE iS u p p o rt In te rv e n ti o n M an u al iv What is included in the iSupport manual? The manual is organized into five modules (see Figure 1 page vi): (1) introduction to dementia; (2) being a carer; (3) caring for me; (4) providing everyday care; and (5) dealing with behaviour changes that might happen in people living with dementia. Module 1 provides an introduction to what dementia is, including what happens to people with dementia and what to do if you think that your family member or friend has dementia. Module 2 focuses on improving communication, shared decision-making and involving others in caring for the person living with dementia. Module 3 aims to reduce carer stress by making time for pleasant activities and thinking differently. Module 4 focuses on eating and drinking, including creating more pleasant mealtimes and preventing health problems, using the toilet and continence care, and personal care. Worldwide, carers of people with dementia should have access to information and support tailored to their needs in order to effectively respond to, and manage, the physical, mental and social demands associated with caring for someone living with dementia. iSupport has been developed to provide accessible, evidence-based training and information, tailored to carers’ needs. It aims to improve knowledge and caregiving skills, such as carers’ ability to cope with dementia symptoms and care for themselves. iSupport seeks to enable people with dementia to live in the community while preventing or reducing carer stress. The lessons included in this manual were carefully designed to help carers tackle the important challenges that they may face when caring for someone living with dementia. US ER G UI DE USER GUIDE iS u p p o rt In te rv e n ti o n M an u al v Finally, Module 5 provides an introduction to common changes in behaviour for people with dementia that might be distressing and upsetting for both the person with dementia and you as the carer. These symptoms include memory loss, aggression, depression and anxiety, difficulty sleeping, delusions and hallucinations, repetitive behaviour, walking and getting lost as well as poor or decreased judgement. Who is the target audience? This iSupport manual is primarily for carers of people with dementia, including family members and relatives, friends, and other carers. However, iSupport may also be of interest to others, for example: z nongovernmental organizations (NGOs) providing skills training, support and/or information to carers of people with dementia; z health and social care workers providing care and information to carers of people with dementia; and z private sector representatives involved in the development of health technologies for dementia, dementia health care service delivery or health care insurance. US ER G UI DE iSUPPORT Caring for me MODULE 3 Being a carer MODULE 2 Providing everyday care MODULE 4 Dealing with behaviour changes MODULE 5 What is dementia and how does it affect someone The journey together Reducing stress in everday life Eating and drinking: more pleasant mealtimes Introduction Delusions and hallucinations Repetitive behaviours Eating, drinking and preventing health problems Memory loss Walking and getting lost Toileting and continence care Aggression Changes in judgement Personal care Depression, anxiety and apathy Putting it all together An enjoyable day Difficulty sleeping Making time for pleasant activities Thinking differently Improving communication Supported decision-making Involving others Introduction to dementia MODULE 1 vi Figure 1 iS u p p o rt In te rv e n ti o n M an u al vii How to use this iSupport manual? iSupport has been developed as a self-help tool for carers of people living with dementia. Each module is divided into individual lessons (see Figure 1). All lessons are structured in the same way. At the beginning, there is an overview of why the lesson is important, how the lesson will help you as a carer and what you will learn. Each lesson then consists of a mixture of brief reading to provide new information, descriptive examples, multiple choice questions and activities to practice what you have learned. You may choose to work through the entire manual from beginning to end or select the lessons that are most relevant to your everyday life. You can also come back to individual lessons. How was iSupport developed? iSupport is grounded in WHO’s Mental Health Gap Action Programme (mhGAP) guidelines for carers of people with dementia. mhGAP aims to scale health and social care services for mental, neurological and substance use disorders for all countries, with a focus on low- and middle-income countries (LMICs). iSupport was developed based on evidence related to the feasibility and effectiveness of carer training and support interventions, both in person and online. Finally, the programme was developed in collaboration with international experts in the field of caregiving for people with dementia and internet-based interventions, and reflects the voices of carers of people with dementia. For more information on the development of iSupport see Pot et al (2019)1. US ER G UI DE 1 Pot AM, Gallagher-Thompson D, Xiao LD, Willemse BM, Rosier I, Mehta KM, Zandi D, Dua T. iSupport: a WHO global online intervention for informal carers of people with dementia. World Psychiatry. 2019. iS u p p o rt In te rv e n ti o n M an u al viii These exercises will help you feel calm and reduce stress. There is an entire lesson on relaxation activities included in Module 3. Relaxation activity Tip/Reminder/Keep in Mind Tips help you reflect on your learning or give practical reminders of how to apply what you have learned to your everyday life. Activity Here you will be asked to reflect upon how caregiving for a person with dementia is affecting your life or the life of the person with dementia. Example. How are you feeling right now? Please select all that apply. † Sad † Happy † Angry † Confused Check your understanding Here you will be asked a question about what you have learned. Answers are at the end of every lesson. Example: What color is the sky? † Green † Blue † Red † Orange US ER G UI DE Below is a guide to the individual exercises and activities that you will encounter throughout the manual. These exercises and activities allow for you to check your understanding and reflect on your learning in practical ways. iS u p p o rt In te rv e n ti o n M an u al ix Other uses of iSupport Although iSupport is primarily a self-help tool, we encourage a broader use. For example, iSupport might be supplemented by guidance from volunteers or health care workers to create more impact. The iSupport manual can also serve as a tool to structure educational or support group meetings for carers of people with dementia, or it may simply be used as a resource tool for participants of self-help groups. Finally, health care workers might find iSupport useful in assisting and supporting carers. Please note that both the iSupport online training programme and this manual are subject to ongoing rigorous field-testing and evaluation. More research is needed to evaluate the effectiveness of local adaptions and implementations. How to adapt iSupport? The iSupport manual represents a template that can be adapted to national or local contexts and needs. An adaptation and implementation guide is available to assist countries/communities in this process. WHO owns the copyright on iSupport. If you are interested in adapting and implementing iSupport, please contact WHO at whodementia@who.int to request a copyright license. This applies to both the iSupport manual and the online programme, accessible at www.iSupportForDementia.org. US ER G UI DE M od ul e 1 . I nt ro du ct io n to d em en tia M od ul e 1 . I nt ro du ct io n to d em en tia INTRODUCTION TO DEMENTIA 1 MODULE iS u p p o rt In te rv e n ti o n M an u al 2 Introduction to dementia Why is this lesson important? Dementia is a disease that can be overwhelming for the person with dementia, but also for you as a carer. There are many myths about dementia and learning more will help explain some common misunderstandings. How will this lesson help me? This lesson helps you to understand the basics of what dementia is and how it affects someone. This information is essential when you are a carer. What will I learn? 1. What is dementia? 2. What causes dementia? 3. What happens to people with dementia as the disease progresses? 4. What to do if you think that the person you care for has dementia? 5. How to reach out for help? 6. What is the focus of this manual? MODULE 1 In tro du ct io n to d em en tia iS u p p o rt In te rv e n ti o n M an u al 3 1. What is dementia? Dementia occurs as a result of a disease process that increasingly damages the brain over time. Dementia affects all groups of society and is not linked to social class, gender, ethnic group, or geographic location. Dementia is not a part of normal ageing. Although dementia is more common among older people, younger people can also be affected. 2. What causes dementia? Dementia is caused by a number of diseases which destroy nerve cells and damage the brain, as outlined below. Alzheimer’s disease Alzheimer’s disease is the most common cause of dementia. It destroys brain cells and nerves, disrupting the transmitters that carry messages in the brain, particularly those responsible for storing memories. Vascular dementia Vascular dementia occurs where blood vessels are damaged, the supply of oxygen to the brain fails and as a result, brain cells die. The symptoms of vascular dementia can occur either suddenly, following a stroke, or over time, through a series of small strokes. Vascular dementia accounts for 20%-30% of all cases of dementia. Dementia with Lewy bodies Dementia with Lewy bodies is similar to Alzheimer’s disease in that it is caused by deteriorating and dying nerve cells in the brain. It takes its name from abnormal deposits of protein - Lewy bodies - in the nerve cells of the brain. It may account for around 10% of all cases of dementia. Approximately, half the people with Lewy body disease also develop signs and symptoms of Parkinson’s disease. MODULE 1 In tro du ct io n to d em en tia iS u p p o rt In te rv e n ti o n M an u al 4 Fronto-temporal dementia In fronto-temporal dementia - including Pick’s disease - damage is usually concentrated in the front part of the brain. In the beginning, personality and behaviour are more affected than memory. Rarer causes of dementia There are many other rarer causes of dementia, such as alcohol-related dementia and dementia due to HIV/AIDS. 3. What happens to people with dementia as the disease progresses? Every person is unique and dementia affects people differently. No two people will develop the same difficulties in exactly the same way. It is not just the brain damage that determines how dementia affects someone, but also other factors including an individual’s personality, life course, general health and functioning, and living environment. MODULE 1 People with dementia often forget things or have trouble with their memory. Select the correct answer. „ TRUE „ FALSE 1. Check your understanding What happens to people with dementia? In tro du ct io n to d em en tia iS u p p o rt In te rv e n ti o n M an u al 5 Dementia symptoms can range from minor memory loss to severe difficulties in memory and thinking that make it impossible to manage daily activities without help. It can be helpful to view dementia as a series of stages to understand the illness. However, it is important to realize that this only provides a rough guide to the progress of dementia. Not all people with dementia will have all symptoms and some of the symptoms may only appear at one stage of the disease. In the early stage of the disease, people with dementia may have memory problems, become disoriented with respect to time, lost in familiar places and show difficulties making decisions. As dementia progresses to the middle stage, people with dementia may become very forgetful and in need of help with daily activities such as shopping, dressing, and washing. Dementia has stages In the late stage, people with dementia may not recognize relatives or friends anymore may display changes in behaviour that can be upsetting and distressing to the person with dementia and those around them. MODULE 1 In tro du ct io n to d em en tia iS u p p o rt In te rv e n ti o n M an u al 6 Here are some common things that may happen to people with dementia. Do you think that your family member/friend/the person that you care for experiences any of the following? Please select all that apply. 1. Activity Does the person you care for… Have trouble remembering things that happened minutes before? Find it difficult to perform daily activities? Struggle to identify time or place? Communicate differently than they did before? Misplace things? Withdraw socially? Show changes in feelings or personality? „ Yes „ No „ Yes „ No „ Yes „ No „ Yes „ No „ Yes „ No „ Yes „ No „ Yes „ No zz Forgetting recent events zz Repeating questions zz Money management zz Shopping zz Preparing dinner zz Forgetting the date and time of appointments zz Difficulty expressing oneself zz Difficulty finding the right words zz Not finding common objects, such as keys zz Suspecting things are stolen zz Showing decline in social activity zz Lacking urge to do something zz Having a lot of ups and downs zz Becoming more anxious than before Examples MODULE 1 In tro du ct io n to d em en tia iS u p p o rt In te rv e n ti o n M an u al 7 4. What to do if you think that the person you care for has dementia? If you think that a family member or friend may have dementia, a good first step is to make sure that they see a medical doctor. The doctor will examine their body and brain functioning. One important point to rule out is whether the person’s memory problems are caused by other treatable conditions such as depression, urinary tract infection, medication side effects, lack of vitamins or a brain tumor. It is important to identify whether the person’s memory problems are really part of dementia or are part of something else. Only a medical doctor can do this, not this manual. What is the first step if you think that a family member or friend has dementia? Please put a check mark () in front of the answers that you think are correct and a cross () in front of those that are wrong. „ Call a friend or relative. „ Use iSupport alone for help. „ Call a medical doctor’s office and make an appointment. „ The person has been to a medical doctor already and has been diagnosed with dementia. First steps MODULE 1 2. Check your understanding What to do if you think that the person you care for has dementia? In tro du ct io n to d em en tia iS u p p o rt In te rv e n ti o n M an u al 8 5. How to reach out for help? It is important to realize that you, alone, are not going to be able to provide all the care that the person living with dementia needs, especially not as things get more complex over time. So, we encourage you to reach out to family members, friends, and professional organizations or services for help. In many countries there are several resources that are very helpful. Some are free while others are not. Please contact your local Alzheimer’s Association for information, support and care that is available in your area and could benefit the person you care for as well as yourself. 6. What is the focus of this manual? The focus is on you, a carer of someone with dementia. Dementia can be overwhelming. For this reason, iSupport provides you with support to cope with caregiving on a day- to-day basis. It is really important that you not only take care of the person living with dementia but also take care of yourself. iSupport will show you how. It will also show you some common scenarios that might happen with people with dementia so that you are aware and can practice how to respond to such situations. Keep in Mind z Dementia affects a person’s brain. z Dementia is common, especially in older people. z Dementia is a disease, not a part of ageing. z As a first step it is important to see a medical doctor, if possible. z It is important for you to take care of yourself, not only the person you care for. z iSupport can support you as a carer. MODULE 1 In tro du ct io n to d em en tia iS u p p o rt In te rv e n ti o n M an u al 9 MODULE 1 In tro du ct io n to d em en tia You finished this lesson, well done! iS u p p o rt In te rv e n ti o n M an u al 10 People with dementia often forget things or have trouble with their memory. 9 True: This is the correct answer. 8 False: This is the incorrect answer. The right answer is that people with dementia often forget things or have trouble with their memory. What is the first step if you think that the person you care for has dementia? 8 ✗Call a friend or relative While friends and family can offer support, this cannot replace a medical exam given by a certified medical doctor. 8 Use iSupport alone for help While this manual provides information and support, it cannot replace a medical exam given by a certified medical doctor. 9 Call a medical doctor’s office and make an appointment This is the best first step if you have not done so already. 9 The person has been to a medical doctor already and has been diagnosed with dementia You have already completed the first important step. MODULE 1 1. Check your understanding What happens to people with dementia? 2. Check your understanding What to do if you think that the person you care for has dementia? ANSWERS - INTRODUCTION TO DEMENTIA AN SW ER S - IN TR OD UC TI ON TO D EM EN TI A M od ul e 2 . B ein g a c ar eg ive r BEING A CARER Lesson 1. The journey together Lesson 2. Improving communication Lesson 3. Supported decision-making Lesson 4. Involving others 2 MODULE iS u p p o rt In te rv e n ti o n M an u al 12 1. How may your roles change over time? You may feel as if your role is changing. In the early stages of dementia, you may still be able to enjoy many different activities together. As dementia progresses, the person will have more difficulty with everyday tasks. This will require a carer to do more to help with everyday life, such as giving medications and taking the person with dementia to appointments. In the middle and later stages of dementia, a carer might need to do even more for the person with dementia. This may include personal care, such as bathing, going to the toilet and dressing. Some tasks may be challenging for carers and cause stress. Why is this lesson important? Dealing with dementia is a journey you will take together, because it changes the daily life of both the person living with dementia and the carer. How will this lesson help me? This lesson teaches you skills for your journey together: to stay connected, involve others, take care of yourself, and plan for the future. What will I learn? 1. How may your roles change over time? 2. How to stay connected with the person you care for? 3. How to plan pleasant activities and relaxation? 4. How to involve others? 5. How to plan well for the future? Lesson 1. The journey together MODULE 2 Le ss on 1 . T he jo ur ne y t og et he r iS u p p o rt In te rv e n ti o n M an u al 13 Olivia has dementia and lives with her husband Jacob. During the past few months, Olivia’s memory loss seems to be more frequent. The last few times Olivia went shopping, she could not remember what to buy. She came home with the wrong things, which was frustrating. Let's look at an example How should Jacob approach Olivia about what happened? Check all the responses you feel are appropriate. „ Leave Olivia alone and see what happens. „ Ask Olivia to ‘work harder’ to remember things. „ Do not let Olivia shop anymore. „ Ask Olivia how she feels about her memory loss. „ Do not blame Olivia, but make a shopping list together with her each time prior to shopping. 1. Check your understanding Frustration about memory loss. MODULE 2 Le ss on 1 . T he jo ur ne y t og et he r iS u p p o rt In te rv e n ti o n M an u al 14 2. How to stay connected with the person with dementia? Here are some small tips to help you communicate better with someone living with dementia: z use simple sentences; z try to stay in control of your feelings; z create time for yourself and for each other. For more tips on how to improve communication with the person living with dementia, including in the later stages of the disease, read Lesson 2. Improving communication in this module. Tip MODULE 2 Le ss on 1 . T he jo ur ne y t og et he r It is important to keep talking together. The sooner you start talking about dementia and its effects on you and the person you care for, the better. Dementia will make doing this more difficult as time goes by. Talk about the changes happening now and what might happen in the future. Stay connected with each other and discuss the changes that may occur over time. It is important to keep talking together. iS u p p o rt In te rv e n ti o n M an u al 15 Providing care may become increasingly time consuming as the disease progresses. Sometimes carers do not take enough time for themselves. It is really important to try and take care of yourself as best as you can, as some carers may break down from the stress. Part of the journey together should include planning pleasant activities and relaxation for yourself. For more tips on how to relax, read Lesson 1. Reducing stress in everyday life in Module 3. For more tips on how to stay in control of your feelings read Lesson 3. Thinking differently in Module 3. For more tips on how to plan pleasant activities for yourself, read Lesson 2. Making time for pleasant activities in Module 3. 3. How to plan pleasant activities and relaxation? MODULE 2 Le ss on 1 . T he jo ur ne y t og et he r Taking care of yourself is important. iS u p p o rt In te rv e n ti o n M an u al 16 Caregiving can sometimes challenge friendships and relationships. It is common for people providing care to feel that no one understands what they are going through. Talking about your thoughts and feelings with others might help make you feel better. 4. How to involve others? Caring for someone with dementia does not have to be a lonely experience. Let friends and family members know when you could use a break. Caring for a loved one with dementia is sometimes too big a job for one person. Molly’s mother-in-law, Jess, has dementia. Molly has a big deadline at work and needs to leave at 7:30 the next morning. The paid in-home helper is not able to arrive until 9:00 in the morning. This leaves Jess alone for over an hour. Molly wonders whether it would be okay to leave Jess alone and feels stressed because she is not sure what to do. How could Molly deal with the situation? Check all of the responses that you feel are appropriate. „ Leave Jess alone and see what happens. „ Ask a neighbour to come visit Jess until the paid in- home helper arrives. „ Ask Jess to ‘take care of herself’. „ Ask her husband to go into work late so he can be with Jess until the paid in-home helper arrives. „ Ask the paid in-home helper to come in early. 2. Check your understanding Feeling stressed due to conflicting duties. MODULE 2 Le ss on 1 . T he jo ur ne y t og et he r iS u p p o rt In te rv e n ti o n M an u al 17 5. How to plan well for the future? Preparing for the future is a topic that will need to be discussed. You will need to make decisions with the person you care for about preferences for who might provide care, planning for the costs of future care needs, and preferences in case of more advanced care needs and end of life decisions. Many people providing care, like you, worry about the future. The earlier you plan for the future, the better and easier it will be for you. Planning early will also ensure that the person you care for will be better able to say what their wishes are. Where possible, discuss topics that concern you. Here are some common questions that carers have. You may want to discuss these with the person you care for. Write down the responses to the questions. What are the person’s preferences when they are no longer able to bathe themselves? For example, would they prefer a male or female to help bathe them? How do they feel about having a close family member bathe them or would they prefer a qualified professional who is unrelated? What does the person you care for want to do themselves for as long as possible? MODULE 2 Le ss on 1 . T he jo ur ne y t og et he r 1. Activity iS u p p o rt In te rv e n ti o n M an u al 18 MODULE 2 Le ss on 1 . T he jo ur ne y t og et he r 1. Activity What are their wishes at the end of life? If you find it helpful, please write down the questions that you might want to discuss in the space below. If more assistance is needed at home, what kind of help would the person you care for prefer now and/or in the future? iS u p p o rt In te rv e n ti o n M an u al 19 What are some ways that Jacob and Olivia can maintain their intimacy as Olivia’s dementia progresses? Think about it before reading on. MODULE 2 Le ss on 1 . T he jo ur ne y t og et he r 2. Activity Let’s revisit the scenario with Olivia and Jacob Intimate relationships may change As you progress through the journey together, partners may experience some changes in their intimate relationship. At first, sexual relationships between partners may still be possible. As the disease progresses, sexual relationships and physical intimacy may become more difficult. Olivia is in the early stages of dementia and lives with her husband Jacob. Olivia and Jacob have a healthy, mutually satisfying physical relationship, but Jacob is worried about the day when these relations may stop. iS u p p o rt In te rv e n ti o n M an u al 20 Ways to stay connected z Use touch, hold hands or do a gentle massage to communicate warmth, connection, safety and love. z Use music – it is truly a universal language. Play music that the person you care for likes and that makes them feel good. z Try to maintain your sense of humour. This will help reduce frustration and tension. z Talk with them about what they like and need – it’s an important conversation to have more than once, as things change over time. z It is okay to take a break. z It is okay to ask for help. z It is okay to feel frustrated sometimes. z It is okay to feel lonely sometimes if you feel that the person you care for is no longer able to meaningfully communicate with you. Taking care of yourself One of the most important things to remember as roles change is that you, as someone providing care for a person with dementia, need to care for yourself too. Throughout this manual we will teach you ways to do this. Here are some tips for partners on how to maintain intimacy, even when sexual relations may no longer be possible with the person living with dementia. MODULE 2 Le ss on 1 . T he jo ur ne y t og et he r Tip Reminder iS u p p o rt In te rv e n ti o n M an u al 21 z As your role changes, it is important to stay connected during your journey together. z Make sure that you plan pleasant activities and relaxation so that your role does not become overwhelming. z Ask for help because providing care to someone with dementia can be tiring. z Make sure that you plan well for the future. z There are many different ways to maintain intimacy and stay connected. Let’s review what you have learned For more tips on how to relax, read Lesson 1. Reducing stress in everyday life in Module 3. MODULE 2 Le ss on 1 . T he jo ur ne y t og et he r You finished this lesson, well done! iS u p p o rt In te rv e n ti o n M an u al 22 9 Ask Olivia how she feels about her memory loss This is a good response because Jacob is addressing the issue by discussing its impact on Olivia and staying ‘connected’. Jacob could also share his own worries about he memory loss. 9 Do not blame Olivia, but make a shopping list together with her each time prior to shopping. This is a very good response, because this will help Olivia to continue shopping and maintain her independence as long as possible. How should Jacob approach Olivia about what happened? 8 Leave Olivia alone and see what happens This is not a helpful response, because Olivia and Jacob both feel frustrated. To stay connected it is important to talk about their frustration and worries about the future. 8 Ask Olivia to ‘work harder’ to remember things This is not a good response, because memory loss is part of living with dementia, it is unlikely to change. 8 Do not let Olivia shop anymore. This is not a good response because doing the shopping is important to Olivia. Shopping may give Olivia purpose in life and a feeling of dignity. ANSWERS - BEING A CARER Lesson 1. The journey together MODULE 2 1. Check your understanding Frustration about memory loss. AN SW ER S - B EI NG A C AR ER • Le ss on 1 iS u p p o rt In te rv e n ti o n M an u al 23 How could Molly deal with the situation? 9 Ask a neighbour to come visit Jess until the paid in- home helper arrives. This is helpful because it ensures Jess’ safety. Molly can do her work and also gets a short break from caregiving. 9 Ask her husband to go into work late so that he can be with Jess until the paid in-home helper arrives. This is a good response. It shows that Molly is trying to involve her family members for support and gives her the break that she needs. 9 Ask the paid-in home helper to come in early. This is a good response but it may not be possible because of the short notice. 8 Leave Jess alone and see what happens. This is not a good response, because it potentially puts Jess in danger and Molly will not be able to perform well at work with the added stress of leaving Jess. 8 Ask Jess to ‘take care of herself’. This is not a good response because her dependence on others is part of living with dementia and unlikely to change. MODULE 2 2. Check your understanding Feeling stressed due to conflicting duties. AN SW ER S - B EI NG A C AR ER • Le ss on 1 iS u p p o rt In te rv e n ti o n M an u al 24 Why is this lesson important? Dementia can often make communication difficult. How will this lesson help me? This lesson helps you to talk in a simple and direct way and show your compassion in everyday situations. What will I learn? 1. How to improve communication? 2. How to check the person’s ability to hear and see? 3. How to get attention in a respectful way? 4. How to keep it simple? 5. How to take the person seriously? 6. How to pay attention to reactions? 7. How to give compliments? 8. How to show compassion? 1. How to improve communication? In this lesson you will learn about tools and tips for good communication. Dementia can often make communication difficult. This can have an impact on your relationship with the person you care for. It can even make them or you frustrated, sad or angry. When you communicate with the person you care for, for example by talking to them or giving them a hug, make sure that they understand what you mean by your action and that you understand them too. Lesson 2. Improving communication MODULE 2 Le ss on 2 . I m pr ov in g co m m un ica tio n iS u p p o rt In te rv e n ti o n M an u al 25 For all communication - talking, touching or gestures – the basics, like the ability to see and hear, are important. Unfortunately, dementia may impair someone’s ability to hear and see. Therefore, it is important that you check whether the person's hearing and sight could be improved by making changes in their environment or arranging for any relevant medical check-ups. 2. How to check the person’s ability to hear and see?Show compassion by listening, take the person you care for seriously, treat them with respect and dignity, show interest, or give them a smile or a hug. This is very important for every human being, including people with dementia. In this lesson we help you to show compassion. Some important basic skills for communication will be explained. MODULE 2 Le ss on 2 . I m pr ov in g co m m un ica tio n Imagine for a moment that you are living with dementia. What would you like other people to do? Please select all that apply. „ Listen to how you feel. „ Talk behind your back. „ Give you a smile. „ Say that they do not care. „ Tell you that they love you. „ Treat you like a child. „ Approach you with respect and dignity. 1. Check your understanding Imagine that you are living with dementia. iS u p p o rt In te rv e n ti o n M an u al 26 Exercise to improve sight The ability to see is important for communication. Check the items below to help improve sight. In general, people with dementia need more light to see clearly. Increase light levels and use daylight where possible. It will help the person living with dementia to see well. You may also think of leaving lights on at night so the person can find the bathroom. Dementia can make it hard to see contrasts. For example, if there is a white plate on a white table, people with dementia may have difficulty seeing the plate. A coloured plate or tablecloth may help. Does the person living with dementia lose or misplace their glasses frequently? Encourage them to always put the glasses in the same spot to reduce frustration over having to look for them. Sometimes a neck cord is also helpful in that case. If the person living with dementia wears glasses, check whether they are clean and still comfortable to wear. Are the glasses comfortable around the ears and nose? If the person living with dementia does not have glasses, but cannot see well anymore, consult a doctor. If the person living with dementia wears glasses, check to see if the prescription is still accurate, or consult a doctor. Is there enough light? „ Yes „ No „ Yes „ No „ Yes „ No „ Yes „ No „ Yes „ No Is there enough contrast in colours? Is the person living with dementia wearing their glasses? Are the glasses still okay? Do you need to consult a doctor? Tips 1. Activity MODULE 2 Le ss on 2 . I m pr ov in g co m m un ica tio n iS u p p o rt In te rv e n ti o n M an u al 27 Exercise to help improve hearing The ability to hear is important for communication. Check the items below to help improve hearing. Minimizing background noise will help to improve hearing. Perhaps take the person living with dementia to a quieter location with fewer distractions. Turn off the television or radio when trying to communicate with them. The person living with dementia may forget to wear the hearing aid or require help or assistance with putting it in properly. If the person living with dementia is wearing a hearing aid, check whether it is clean, fits snugly in the ear canal, is still comfortable to wear and the batteries are charged. If the person living with dementia wears a hearing aid, check if the prescription is still accurate, or whether you need to consult a doctor. If the person living with dementia does not have a hearing aid, but cannot hear well anymore, you should also consult a doctor. Is there too much noise? Is the hearing aid still okay? Do you need to consult a doctor? If the person living with dementia has a hearing aid, is he/she wearing it? Tips MODULE 2 Le ss on 2 . I m pr ov in g co m m un ica tio n 2. Activity „ Yes „ No „ Yes „ No „ Yes „ No „ Yes „ No iS u p p o rt In te rv e n ti o n M an u al 28 3. How to get attention in a respectful way? The person living with dementia is a person with feelings, no matter how serious the disease is or how advanced communication problems are. Therefore, an important first step is to make contact with the person you care for by catching their attention. Below are some suggestions regarding how to capture the attention of a person living with dementia. Please put a check mark () in front of the answers that you think are correct and a cross () in front of those that are wrong. „ Raise your voice or shout. „ Speak clearly and slowly, at a volume that is comfortable for the person, face to face and at eye level. „ Tap a hand, arm or front of the shoulder. „ Stop and hold the person to make him or her listen. „ Approach the person from the back and touch their shoulder. „ Call the person living with dementia by a name that they recognize. MODULE 2 Le ss on 2 . I m pr ov in g co m m un ica tio n 2. Check your understanding Get attention in a respectful way. z Gaining attention is a first important step for good communication. z There are different ways to gain the attention of a person living with dementia in a respectful manner. Remember iS u p p o rt In te rv e n ti o n M an u al 29 Jonathan takes care of his father who has dementia. Jonathan notices that his father does not understand him. Can you tell why? Check the items in the list below that you think could impair communication between Jonathan and his father. „ The radio is on. „ Jonathan is making a phone call. „ Jonathan asks multiple questions at the same time. z Ask or tell the person living with dementia one thing at a time. z Use simple language and keep sentences short. Avoid long and complicated sentences, focus on one subject at a time. z When needed, change from open-ended to closed-ended questions that can be answered with YES or NO. z Make sure there are no distracting background noises such as a television or radio. Often the language we use to get a message across is too complicated. Keeping it simple will help the person you care for understand you better. 4. How to keep it simple? MODULE 2 Le ss on 2 . I m pr ov in g co m m un ica tio n Keep in Mind 3. Check your understanding Keep it simple. iS u p p o rt In te rv e n ti o n M an u al 30 At some point, you may not understand what the person you care for means. The language they use may even seem strange or funny. However, it is important that you take them seriously. The person you care for is trying to tell you something, even though their communication skills may be impaired due to the dementia. 5. How to take the person seriously? MODULE 2 Le ss on 2 . I m pr ov in g co m m un ica tio n It is important that you take the person you care for seriously. iS u p p o rt In te rv e n ti o n M an u al 31 John is visiting his father who has dementia. When his father wants to describe his morning to John, he cannot find the right words. John says to his wife in front of his father: “I have no clue what he means!” His wife answers: “Yes, I don’t know either. He is just like a child!” Let's look at an exampleMODULE 2 Le ss on 2 . I m pr ov in g co m m un ica tio n Which of the following statements do you think is correct? Check all the responses that you feel are appropriate. „ John should not talk about his father when he is in same the room. John could have said: “It is difficult to understand what you mean.” In addition, he could have asked some questions that his father could have answered with ‘YES’ or ‘NO’. For example: “Have you gone outside this morning?” „ John and his wife could be more patient. „ John and his wife could ask John’s father if it is okay when they try to guess what he wants to say. „ It is important that John and his wife talk about the difficulty to understand John’s father in front of him. „ His wife is right: a person living with dementia is just like a child. 4. Check your understanding Take the person seriously. z It is important to take the person that you are caring for seriously and treat them with respect and dignity. z Do not talk about them in their presence. z Be patient and give them time to find the right words. z When the person you care for is difficult to understand, it may help to ask closed- ended questions that can be answered with YES or NO to understand what they mean. Remember iS u p p o rt In te rv e n ti o n M an u al 32 Take a look at the cartoons below. Do you understand these feelings? Select the right answer for each cartoon. You can tell a lot from the way someone speaks and looks. For example, if someone is smiling, you can assume that this person is in a good mood. Keeping this in mind will help you communicate with the person you care for. 6. How to pay attention to reactions? Happy Angry Sad Scared Happy Angry Sad Scared Happy Angry Sad Scared Happy Angry Sad Scared z Facial expressions and body language tell us how a person is feeling. Other examples of body language include fidgeting, having arms crossed or pacing. These can give us messages about how the person may be feeling. For example whether the person may be nervous, upset or anxious. z Take notice of the responses and body language of the person you care for. MODULE 2 Le ss on 2 . I m pr ov in g co m m un ica tio n 5. Check your understanding Pay attention to reactions. Keep in Mind iS u p p o rt In te rv e n ti o n M an u al 33 7. How to give compliments? Complimenting the person you care for is important. In general, it is much more effective to say what someone is doing well, than to say what they are doing wrong. A compliment can range from commenting that someone has done something well to saying that they look nice. You can give compliments in different ways and in different situations. Here is a list of statements. These statements include several compliments. However, there are also some statements that are not compliments. Please put a check mark () in front of the statements that are compliments and a cross () in front of those that are not. „ You look beautiful. „ You are good at ... „ What are you doing?! Stop it! „ You are very helpful. Thank you. „ You are making a mess. „ You should be ashamed of forgetting everything. „ I love having you around. „ You are driving me crazy. „ You have a great smile. Statements MODULE 2 z The person you care for will feel good if you say something positive. z Compliments can be given in many different ways. z Saying something negative will make a person feel bad. Keep in Mind 6. Check your understanding Give compliments. Le ss on 2 . I m pr ov in g co m m un ica tio n iS u p p o rt In te rv e n ti o n M an u al 34 Think about all the things that you like about the person you care for. Now try to write down something you would say to give them a compliment. MODULE 2 3. Activity Le ss on 2 . I m pr ov in g co m m un ica tio n iS u p p o rt In te rv e n ti o n M an u al 35 It is important that you show compassion, even if a person living with dementia is repeating the same questions over and over again, or understanding each other becomes increasingly difficult. You need to remember that dementia is a disease that can make communication difficult. For example, a person living with dementia may have forgotten what they just said. You need to use extra effort and be patient with the person you care for. 8. How to show compassion? MODULE 2 Le ss on 2 . I m pr ov in g co m m un ica tio n William often visits his sister, Elena, who lives with dementia. Elena’s husband passed away six months ago. When William is visiting, Elena often asks where her husband is. William finds this difficult. He knows Elena is missing her husband and may have forgotten that he died. William tries to distract her by asking questions about other things, such as: ”How was your day?” Elena persists in asking where her husband is. Today William tries a different approach William says to Elena: “It must be difficult for you that he died”. He gives Elena a hug. William shows Elena some pictures of her husband that he brought from home and talks to her about her husband. William showed that he understands that Elena is missing her husband and tries to support her. Let's look at an example Did William respond well? Please select the correct answer below. „ YES „ NO Did William respond well? Please select the correct answer below. „ YES „ NO 7. Check your understanding How to show compassion (1). 8. Check your understanding How to show compassion (2). iS u p p o rt In te rv e n ti o n M an u al 36 Keep in mind that people with dementia also have the right to grieve the loss of a loved one in a safe and supportive setting. The example of William and his sister, Elena, shows that: z You can show compassion in different ways. z It is important to take a person living with dementia seriously and to pay attention to the questions they have. z Showing compassion helps to improve your relationship with the person you care for. You have practiced the following communication skills: z check ability to hear and see; z get attention in a respectful way; z keep it simple; z take the person seriously; z pay attention to reactions; z give compliments; z show compassion. Let’s review what you have learned MODULE 2 Le ss on 2 . I m pr ov in g co m m un ica tio n You finished this lesson, well done! iS u p p o rt In te rv e n ti o n M an u al 37 MODULE 2 ANSWERS - BEING A CARER Lesson 2. Improving communications What would you like other people to do? 9 Listen to how you feel 8 Talk behind your back 9 Smile at you 8 Say that they do not care 9 Tell you that they love you 8 Treat you like a child 9 Approach you with respect and dignity 1. Check your understanding Imagine that you are living with dementia. AN SW ER S - B EI NG A C AR ER • Le ss on 2 iS u p p o rt In te rv e n ti o n M an u al 38 MODULE 2 8 ✗Stop and hold the person to make them listen. This is not a respectful way to get attention. It may even make the person living with dementia feel distressed or angry. 8 Approach from the back and touch the person’s shoulder. This may startle someone who is not expecting you or perhaps did not hear you coming. 9 Call the person living with dementia by a name that he or she recognizes. This is a good way to attract the attention of a person living with dementia. You might use their first name or a nickname that was used in the past. Below are some suggested ways to get the attention of a person living with dementia. What are the right and wrong answers? ✗ 8 Raise your voice or shout. Raising your voice is not a respectful way to gain attention. It may even make the person living with dementia feel sad, frustrated or angry. 9 Speak clearly, slowly, at a volume that is comfortable for the person, face to face and at eye level. This is an appropriate way to make contact. It shows that you are seeking contact in a respectful manner. 9 Tap a hand, arm or front of the shoulder. This is a good way to attract the attention of a person living with dementia. 2. Check your understanding Get attention in a respectful way. AN SW ER S - B EI NG A C AR ER • Le ss on 2 iS u p p o rt In te rv e n ti o n M an u al 39 Jonathan takes care of his father who has dementia. Jonathan notices that his father does not understand him. Can you tell why? 9 The radio is on. Very good! A radio can be very distracting. It makes it difficult to follow what someone else is saying, especially for people with dementia who can have difficulty concentrating. 9 Jonathan is making a phone call. Very good! Making a phone call does not show interest and will confuse his father. It’s important for people with dementia to try and stay focused on one task. It will be difficult to get back on the same subject after making a phone call. 9 Jonathan asks multiple questions at the same time. Correct! Asking too many questions at the same time makes it difficult for his father to understand. MODULE 2 3. Check your understanding Keep it simple. AN SW ER S - B EI NG A C AR ER • Le ss on 2 Which of the following statements do you think is correct? 9 John should not talk about his father when his father is in same the room. He could have said, “It is difficult to understand what you mean.” In addition, he could have asked some questions that his father could have answered with ‘YES’ or ‘NO’. For example: “have you gone outside this morning?” Correct! John takes his father seriously when trying to understand what he wants to say. Do not talk about the person you care for while they are in the same room. 9 John and his wife could be more patient. Correct! It takes people with dementia longer to find the right words and they need time and patience to be understood. 9 John and his wife could ask John’s father if it is okay when they try to guess what he wants to say. This is a correct answer because some people with dementia appreciate help with finding the right words or fill in sentences. 4. Check your understanding Pay attention to reactions. iS u p p o rt In te rv e n ti o n M an u al 40 MODULE 2 AN SW ER S - B EI NG A C AR ER • Le ss on 2 Take a look at the cartoons below. Do you understand this feeling? Select the right answer below. Happy 9 Angry Sad Scared 9 Happy Angry Sad Scared Happy Angry 9 Sad Scared Happy Angry Sad 9 Scared 5. Check your understanding Pay attention to reactions. 9 You look beautiful. 9 You are good at … 8 What are you doing?! Stop it! 9 You are very helpful. Thank you. 8 You are making a mess. 8 You should be ashamed of forgetting everything. 9 I love having you around. 8 You are driving me crazy. 9 You have a great smile. 6. Check your understanding Give compliments. iS u p p o rt In te rv e n ti o n M an u al 41 Did William respond well in the first example? 8 No Will wants to distract his sister’s attention because he knows she is missing her husband and will be sad to be reminded that he died. Although Will has the best intentions, ignoring her questions is not the right way to respond especially because his sister persists in asking. Did William respond well in the second example? 9 ✓Yes It is important to try different responses to identify the one which will cause the less distress. Initially William tried to distract his sister with no success. Today, by showing his sister pictures of her husband, they had a good conversation about him. MODULE 2 7. Check your understanding How to show compassion (1). 8. Check your understanding How to show compassion (2). AN SW ER S - B EI NG A C AR ER • Le ss on 2 iS u p p o rt In te rv e n ti o n M an u al 42 Why is this lesson important? Making decisions can become more difficult for a person living with dementia over time. How will this lesson help me? By practicing how to support a person living with dementia to make their own decisions for as long as possible or to assist in making decisions in the person’s best interest. What will I learn? 1. Why is support in decision-making needed? 2. How to make decisions in someone’s best interest? 3. How to support someone with dementia to make everyday decisions? 4. How to support someone with dementia to make everyday decisions as the dementia progresses? 5. How to support someone with dementia in making complex decisions? 1. Why is support in decision-making needed? Supporting someone with dementia to make their own decisions is very important. Like everyone else, people living with dementia have the right to participate in all decisions that affect their lives and wellbeing. However, making decisions may become difficult due to the progression of dementia. Sometimes this results in relatives taking over decision- making, instead of supporting people with dementia to make their own decisions. In this lesson, you will learn how you can support the person you care for when they need to make a decision. Lesson 3. Supported decision-making MODULE 2 Le ss on 3 . S up po rte d de cis io n- m ak in g iS u p p o rt In te rv e n ti o n M an u al 43 z Memory loss Having memory loss will cause someone with dementia to sometimes forget the information that is needed to make a decision. z Problems with thinking or difficulties identifying and describing what someone with dementia thinks When a person living with dementia has problems thinking or describing what they are thinking, it might be more difficult for them to make a decision and share it with you. z Problems with making complex decisions Complex decisions, such as deciding whether or not to go outside alone, can be more challenging, therefore support is important. MODULE 2 Le ss on 3 . S up po rte d de cis io n- m ak in g Everybody needs to make decisions, whether they are big or small. Because the person you care for has dementia, your support is needed to help them clarify what they want. Decisions in line with the interests, needs and wishes of the person you care for will make them more independent. Decision-making can be difficult Why do you think decision-making can be difficult for a person living with dementia? Have a look at the reasons below to find out more. 2. How to make decisions in someone's best interest? iS u p p o rt In te rv e n ti o n M an u al 44 MODULE 2 1. Activity Le ss on 3 . S up po rte d de cis io n- m ak in g Do you support the person you care for to make decisions? You may want to write down the ways that you support their decision-making: Think about your own situation z Making decisions will become more difficult as the dementia progresses. z Your support for the person you care for to make their own decisions is needed. z Enabling them to make their own decisions might not be easy because of their dementia. iS u p p o rt In te rv e n ti o n M an u al 45 It is important to encourage the person you care for to do whatever they are still able to do. Supporting them in making decisions will help them to be more independent. Supporting them in making decisions might also improve their self-esteem. Manuel has Alzheimer's disease and is married to Maria. Manuel always used to lay out his clothes for the next day in the evening. Now he has dementia, he forgets to do so and sometimes wears the same clothes everyday. Let's look at an example 3. How to support someone with dementia to make everyday decisions? MODULE 2 Le ss on 3 . S up po rte d de cis io n- m ak in g z It is important to encourage the person that you care for they continue doing whatever they are still able to do. z Supporting the person you care for in making decisions will help them be more independent. z Support the person you care for in making decisions may add to their self-esteem. Keep in Mind1. Check your understanding Support for making everyday decisions. What do you think is the best way to make sure that Manuel wears clean clothes, without taking over his decisions at the same time? „ Before Maria and Manuel go to bed, Maria asks Manuel what he wants to wear the next day. She then asks Manuel to lay them out. „ Maria chooses clothes for Manuel and she asks him to lay them out. „ Maria chooses clothes for Manuel in the morning and gives them directly to Manuel to wear. iS u p p o rt In te rv e n ti o n M an u al 46 4. How to support someone with dementia to make everyday decisions as the dementia progresses? Let's look at an example After some time, Manuel feels stressed when choosing his clothes for the next day with Maria. He starts to worry about everything else he needs to do the next day and becomes anxious. This makes it difficult for Maria to support Manuel in making his decision. MODULE 2 Le ss on 3 . S up po rte d de cis io n- m ak in g z Supporting someone with dementia in making their own choices is possible, even as dementia progresses. z It may help to simplify decisions by limiting the number of choices or discuss the situation at a better time when the person is in a better mood or less worried. Remember What should Maria do? Please check all the responses that you feel are appropriate. „ Instead of supporting Manuel to choose his clothes the evening before, she asks him in the morning, at the beginning of the day. „ Maria lays out Manuel’s clothes in the evening. „ When Maria asks Manuel what he wants to wear she can give him only a few choices and, for example, ask him whether he wants to wear his blue or black trousers. 2. Check your understanding Support for making decisions as the dementia progresses. iS u p p o rt In te rv e n ti o n M an u al 47 5. How to support someone with dementia to make complex decisions? There comes a time in the course of dementia when someone may not be able to make complex decisions anymore, such as decisions concerning medical treatment. MODULE 2 Le ss on 3 . S up po rte d de cis io n- m ak in g What should the doctor and Chrissy do? Multiple answers are correct. „ Mary says what she wants, so she does not need support in making the decision whether or not to start with the medication. „ The doctor says that she should take the medication because it is good for her health. „ The doctor explains that taking the medication is good for her health, because it will slow down further damage in her brain because of her dementia. „ Her daughter says: "Mom, you know that you are forgetting things and that you have difficulties to find the right words when you want to say something. By taking the medication these problems may slow down a bit." 3. Check your understanding Support for making complex decisions (1). Let's look at an example Mary has vascular dementia and is taken care of by her daugther Chrissy. The doctor advises Mary to start using medication for her blood pressure. Mary says that she does not want to take pills because she does not understand why she needs them. iS u p p o rt In te rv e n ti o n M an u al 48 MODULE 2 Le ss on 3 . S up po rte d de cis io n- m ak in g What do you think are reasons that Jack can no longer make the decision himself? Please check all the responses that you feel are appropriate. „ Jack is unable to understand the information that is relevant to making the decision. „ Jack does not agree with the doctor. „ Jack is unable to communicate his decision (by talking, using body language or any other means). „ Jack is unable to use or weigh the information as part of the decision-making process. 4. Check your understanding Support for making complex decisions (2). Let's look at another example Jack who has dementia lives with his wife, Ella. Jack’s condition deteriorates. Ella decides to make an appointment with the doctor without Jack to discuss his medical condition and to make a decision regarding his medication. Ella discusses the issue with Jack’s sister as well, who asks her what she thinks Jack would have decided before he was diagnosed with dementia. Ella talks to the doctor and tries to imagine what Jack would have decided if given all the information. iS u p p o rt In te rv e n ti o n M an u al 49 The capacity to make a decision may be affected by the following considerations: z The type of decision being made. Someone with dementia might still be able to choose what kind of clothes to wear, but perhaps not whether to take medicines. z Change over time. Imagine that Jack had a severe infection that made him very confused. After this infection is cured, he might be able again to decide whether or not to take the medication. z Can be difficult to assess. Sometimes it is not clear, in which case there is no other alternative other than to help the person living with dementia make a decision that is in their best interest. MODULE 2 Le ss on 3 . S up po rte d de cis io n- m ak in g z Someone with dementia can be involved in making complex decisions, such as medical decisions, with the right support. z Support for making complex decisions should focus on providing correct information to help the person you care for understand what the consequences of the decision are. Remember iS u p p o rt In te rv e n ti o n M an u al 50 You can make decisions in the best interest of a person living with dementia by taking the following aspects into account. z Their past and present wishes and feelings (and, in particular, any relevant statement written when they did not have dementia). z Beliefs and values that may have influenced the person’s decision when he or she did not have dementia. z The views of anyone named by the person you care for as someone to be consulted to help with making decisions. z Be aware that the best interest of the person you care for is not always the same as your own best interest or that of other family members. In the end, it is the best interest of the person you care for that counts, since the decision concerns them. z Take into account that someone’s past wishes can be different from their present ones. Preparing for decisions To prepare for decisions that you might have to make for the person living with dementia it is important to: z Gather the information you need to make informed choices for the person as early in the course of the disease as possible. z Talk about decisions with your family, friends, doctor and any others close to you to help with decisions that are important to you both. z Prepare instructions that accurately reflect the wishes of the person living with dementia, in accordance with your country’s law (advance directives), and inform each other and your doctor about your preferences and decisions concerning medical treatment. MODULE 2 Le ss on 3 . S up po rte d de cis io n- m ak in g Remember iS u p p o rt In te rv e n ti o n M an u al 51 Think of the following choices when you prepare instructions that accurately reflect the wishes of the person you care for. MODULE 2 Le ss on 3 . S up po rte d de cis io n- m ak in g 2. Activity z Where does the person you care for prefer to live if it is no longer possible to stay at home? z What aspects of home/community/facility care are important to the person you care for? z Who does the person you care for want in charge of their finances when they are no longer capable of doing it? z How does the person you care for want to be treated at the end of their life? z Are there medical treatments that the person you care for wants to receive or refuse? z What does the person you care for want when eating is no longer possible? Would they want to get a feeding tube? z Does the person you care for have any particular fears or concerns about medical treatments? iS u p p o rt In te rv e n ti o n M an u al 52 You finished this lesson, well done! MODULE 2 Le ss on 3 . S up po rte d de cis io n- m ak in g iS u p p o rt In te rv e n ti o n M an u al 53 9 ✗Before Maria and Manuel go to bed, Maria asks Manuel what he wants to wear the next day. She then asks Manuel to lay them out. This is the right answer! This way Manuel is encouraged to do the things he is still able to do. 9 Maria chooses clothes for Manuel and she asks Manuel to lay them out. This answer is okay. It is good that Manuel is encouraged to lay out his clothes himself; however, it would have been better if Maria supported Manuel in making his own decision about what to wear. What do you think is the best way to make sure that Manuel wears clean clothes, without taking over his decisions at the same time? 8 Maria chooses clothes for Manuel in the morning and gives them directly to Manuel to wear. This is not a good option. Maria is taking control away from Manuel. It would be better if she supported him in making his own decision and encouraged him to do the things which he is still able to do, such as laying out the clothes. MODULE 2 ANSWERS - BEING A CARER Lesson 3. Supported decision-making 1. Check your understanding Support for making everyday decisions. AN SW ER S - B EI NG A C AR ER • Le ss on 3 iS u p p o rt In te rv e n ti o n M an u al 54 What should Maria do? 9 Instead of supporting Manuel in choosing what he wants to wear in the evening for the next day, she asks him in the morning at the beginning of the day. Correct! Maria still supports Manuel in deciding what he wants to wear, but he will not start to worry the evening before. 8 ✗Maria lays out Manuel’s clothes in the evening. This is not a good option. Maria is deciding for Manuel, while he still might be able to make his own decisions. 8 When Maria asks Manuel what he wants to wear in the evening she can give him only a few choices and, for example, ask him whether he wants to wear his blue or black trousers. In some cases this might be a good option. Even though Maria decides which trousers Manuel should wear the next day, Manuel can still make the final decision himself. However, in this case it might not be the best thing to do, because it might not solve the problem that Manuel will worry about the next day. MODULE 2 ANSWERS - BEING A CARER Lesson 3. Supported decision-making 2. Check your understanding Support for making decisions as the dementia progresses. AN SW ER S - B EI NG A C AR ER • Le ss on 3 iS u p p o rt In te rv e n ti o n M an u al 55 8 ✗Mary says what she wants, so she does not need support in making the decision whether or not to start the medication. This is not correct. Since Mary has dementia, we are not sure whether or not she understands why she needs the medication and what the consequences of taking or not taking the medication might be. 8 ✗✗The doctor says that she should take the medication because it is good for her health. Incorrect. Although it is true that the medication will be good for her health, the doctor is telling Mary what to do, which is not so good. What should the doctor and Chrissy do? Multiple answers are correct. 9 The doctor explains that taking the medication is good for her health because it will slow down damage to her brain resulting from her dementia. This is right! Her doctor’s explanation allows Mary to understand the importance of taking the medication and will enable her to make an informed decision. 9 Her daughter says: “Mom, you know that you are forgetting things and that you have difficulties to find the right words when you want to say something. By taking the medication these problems may slow down a bit.” Correct! Using different words to explain the possible reasons for taking the medication might help Mary understand why taking the medication would be beneficial for her. MODULE 2 ANSWERS - BEING A CARER Lesson 3. Supported decision-making 3. Check your understanding Support for making complex decisions (1). AN SW ER S - B EI NG A C AR ER • Le ss on 3 iS u p p o rt In te rv e n ti o n M an u al 56 9 ✗Jack is unable to understand the information relevant for the decision. 8 ✗Jack does not agree with the doctor. 9 ✗Jack is unable to communicate his decision (by talking, using body language or any other means). 9 ✗Jack is unable to use or weigh the information as part of the decision-making process. What do you think are the reasons that Jack can no longer make the decision himself? Multiple answers are correct. MODULE 2 ANSWERS - BEING A CARER Lesson 3. Supported decision-making 4. Check your understanding Support for making complex decisions (2). AN SW ER S - B EI NG A C AR ER • Le ss on 3 iS u p p o rt In te rv e n ti o n M an u al 57 1. The importance of involving family and friends It might be difficult to involve others caring for the person living with dementia. You could think that others will not be able to provide care as well as you can, that they do not have time or might say ‘no’ when asked for help. As time progresses, the person you care for will need more and more help with daily activities. Therefore, it is important to involve others so that the tasks can be shared. It can also be helpful to have someone to talk to who understands your situation and feelings. Do not wait too long, since help early on will allow you to continue providing care to your family member or acquaintance in the long term. Why is this lesson important? Sharing caregiving responsibilities with other people will help you to continue providing care in the long term. How will this lesson help me? By practicing the skill ‘asking for help’. What will I learn? 1. The importance of involving family and friends. 2. Types of help and support that you might need. 3. Effectively asking for help from others. MODULE 2 Le ss on 4 . I nv ol vin g ot he rs Lesson 4. Involving others iS u p p o rt In te rv e n ti o n M an u al 58 2. Types of help and support that you might need First let’s look at an example to find out whether Li, David and Fatima are receiving help, and if so, what kind of help. z Li takes care of her mother who has dementia. She receives no help from others. She spends a lot of time taking care of her mother and feels overwhelmed. She would like to get some help from others. z David takes care of his wife who has dementia. David has involved his two sisters in the care. The sisters regularly take his wife out for shopping or help clean the house. z Fatima takes care of her husband who has dementia. Fatima receives help from her family, friends and neighbours. Some helpers assist with shopping or cleaning the home, others take her husband for a walk or just listen to the difficulties she has with his memory loss. z Friends: Mohammed is always there to listen when I need it. The types of help and support that Fatima receives are presented below. Practical help z Family: once a month my sister helps with cleaning the house. z Friends: once a week my friend Hiba comes over to help with shopping and cooking. z Family: several family members take my husband out for a walk on a regular basis. Help with pleasant activities Emotional support MODULE 2 Le ss on 4 . I nv ol vin g ot he rs z Acquaintances/neighbours: my neighbours help to find information on dementia. Providing information iS u p p o rt In te rv e n ti o n M an u al 59 What kind of help do you receive? Please write down the types of help that you receive in the spaces below. If the help you receive is not listed below, use the ‘Other help’ box at the end to fill in your answer. Do your family, friends, neighbours or others provide: Practical help? Emotional help? Help with pleasant activities? 1. Activity MODULE 2 Le ss on 4 . I nv ol vin g ot he rs iS u p p o rt In te rv e n ti o n M an u al 60 Information? Other help? 1. Activity Keep in mind that sharing care tasks is common. It may allow you to do something pleasant for yourself, run an errand without having to bring the person you care for, or just enjoy a well-deserved break. Tip MODULE 2 Le ss on 4 . I nv ol vin g ot he rs iS u p p o rt In te rv e n ti o n M an u al 61 Your own support network Take a look at your own network as stated in the previous pages, what do you see? Please select the response that applies to the help that you receive. „ I receive help in one category. It is very good that you are already involving others. You might want to receive help in other ways too. Think about people who might be able to help you. „ I receive help in more than one category. It is very good that you are already involving others in caring for your family member or acquaintance. If needed, you can ask for help from other people as well. Perhaps the examples helped you identify people you had not considered before. „ I do not receive help. Keep in mind that providing care can be difficult. Think about ways to involve others in sharing the tasks. Remember that you do not know whether people will want to help unless you ask. It can be difficult to find help if you don’t have family nearby or live in a rural or isolated area, or if your family refuses to help. Think about alternatives such as your faith community, contacting your doctor for advice, or your national / local dementia association. 2. Activity MODULE 2 Le ss on 4 . I nv ol vin g ot he rs iS u p p o rt In te rv e n ti o n M an u al 62 What would you like to get more help with? Before you ask someone for help, it is important to know what it is you would like to ask. It can help to make a wish list of your needs. Let’s first have a look at Li, David and Fatima. You can see their wish lists below. Li I would like one evening for myself to do a hobby or activity. I would like help with cleaning the house. David I would li ke to hav e someone I can talk to about my feelings. Fatima I would like to get into contact with other carers to share my experiences and receive tips. MODULE 2 Le ss on 4 . I nv ol vin g ot he rs iS u p p o rt In te rv e n ti o n M an u al 63 Make a list of wishes that seem achievable Wish 1 Wish 2 Wish 3 What is on your wish list? Make your own wish list for the help or support that you would like to receive. Wishes could be for example: z I would like help with bathing the person I care for. z I would like advice on how to deal with the person I care for. z I would like adjustments to be made in my home to accommodate the care needs of the person I care for. List those wishes that you think are achievable. If you know beforehand that you might not be able to achieve a certain wish, it might be better to list a different wish that is more attainable. For instance, Li would prefer to hire someone to clean the house every week. However, Li cannot afford this and realizes that her wish is not realistic. She could hire someone to clean the house once every two weeks or ask someone who she does not need to pay, such as a friend or relative. She can ask the person to clean the whole house, or to help with specific tasks that are difficult for her, such as cleaning the floors. 3. Activity MODULE 2 Le ss on 4 . I nv ol vin g ot he rs iS u p p o rt In te rv e n ti o n M an u al 64 Now it is time to think about who could help. Some people have no problem asking for help, other people are not used to it but do not mind giving it a try. There are also people who find it very difficult to ask for help. The next section will teach you skills to ask for help effectively. Keep in mind your support wish list. 3. Effectively asking for help from others If you would like to ask others for help it is important to do so in an effective way. This means that you should be able to talk to others about your thoughts, feelings and experiences. It also means that you stand up for yourself. Things that will help you to effectively ask for help: z Think about what you want or need and what your feelings are about the current situation. z Describe your problem in one or two sentences. z Describe your thoughts and feelings clearly, so that the other person can understand your point of view. Who can I turn to? z Be honest and direct. z Keep the feelings of the other person in mind. z Give detailed information about what kind of help you need. z Be flexible: maybe you won’t get exactly what you asked for, but you will get something that will be helpful. z Break it down into smaller parts – it’s usually easier for people to say yes to a little request than to a big one. z If you reach a point where you do not know what to do anymore: take a break – go back to the discussion at a future time. For example: agree to think about it and talk again tomorrow afternoon. z If appropriate, offer to do the task together first. z Don’t give up. It may take many attempts before things change. z Asking for help will not always lead to the result you want, but it is important that you feel able to ask for it. MODULE 2 Le ss on 4 . I nv ol vin g ot he rs iS u p p o rt In te rv e n ti o n M an u al 65 „ Li tells her sister that she wants to take care of their mother, but that she just needs a short break from caregiving during the week. She says: “I would like to discuss how you could help in a way that is possible for you.” Which of the following examples represents an effective way to ask for help? Please check the one response that you think is correct. She knows who to turn to for help and decides to ask her sister. Li would like to have an evening to herself once a week. She tries to ask for help in three different ways. Let’s have a look at Li again „ Li decides to attend a weekly one-hour class in the evening to have a break from providing care. However, she does not discuss with her sister the importance of having a break during the week. When she asks her sister to take care of their mother for an hour, her sister said: “Sorry, I have no time.” Li cancels her class. „ Li approaches her sister by saying, “I’m sick and tired of you not doing anything! You never have time to help me care for our mother!” 1. Check your understanding Asking for help effectively. MODULE 2 Le ss on 4 . I nv ol vin g ot he rs iS u p p o rt In te rv e n ti o n M an u al 66 Your own plan to involve others Make your own plan to involve others in caring for your family member or acquaintance with dementia. Now think of your wishes and who you can turn to for help. Imagine yourself in a situation in which you will ask for help. Please answer the following questions in the boxes below. Who would you like to ask for help? What would you like to say? What would you do if the person does NOT want to help? What would you do if the person does want to help? 4. Activity MODULE 2 Le ss on 4 . I nv ol vin g ot he rs iS u p p o rt In te rv e n ti o n M an u al 67 You finished this lesson, well done! MODULE 2 Le ss on 4 . I nv ol vin g ot he rs iS u p p o rt In te rv e n ti o n M an u al 68 MODULE 2 AN SW ER S - B EI NG A C AR ER • Le ss on 4 8 Example 2 Passive. This is not an effective way of asking for help. Her sister may not be aware that Li is feeling overwhelmed. Li is not being honest about her feelings and is trying to avoid a conflict with her sister. She does not stand up for herself. It is a passive way of asking for help. 8 Example 3 Aggressive. This is not an effective way of asking for help. Li becomes angry. However, her sister may not be aware that Li is feeling overwhelmed, because she did not clearly mention this. She does not approach her sister in a respectful way. It is an aggressive way of asking for help. Which of the examples is an effective way to ask for help?✗ 9 Example 1 Effective. This is an effective way of asking for help. Li stands up for herself, says what she is thinking and is honest about her need for a regular break. She also keeps the interests of her sister in mind. 1. Check your understanding Asking for help effectively. ANSWERS - BEING A CARER Lesson 4. Involving others M od ul e 3 . C ar in g fo r m e CARING FOR ME Lesson 1. Reducing stress in everyday life Lesson 2. Making time for pleasant activities Lesson 3. Thinking differently 3 MODULE iS u p p o rt In te rv e n ti o n M an u al 70 Why is this lesson important? It is important to take care of yourself while caring for another person. This lesson will help you to keep providing care. How will this lesson help me? This lesson helps to reduce stress and renew your energy with exercises that do not take much time. What will I learn? 1. The importance of relaxing. 2. Different ways to relax: z basic breathing; z mindful breathing; z neck movements; z number counting; z imagery; z total stretching; z muscle relaxation. 3. Relaxing at any time and any place. MODULE 3 Le ss on 1 . R ed uc in g st re ss in ev er yd ay lif e Lesson 1. Reducing stress in everyday life iS u p p o rt In te rv e n ti o n M an u al 71 1. The importance of relaxing Let’s look at an example Diana: no time, no energy Diana takes care of her husband Dan who has dementia. She feels increasingly tense. A friend advises her to try to relax and not ask too much of herself. Diana tells her friend that she does not have the time or energy to relax. Her friend explains that there are ways to relax that do not take much time, and that relaxing might give Diana renewed energy that could help her get tasks done more easily. Diana succeeds in relaxing Diana decides to follow her friend’s advice and tries the breathing exercise her friend showed her. When Diana sees her friend again she says: “Thank you for the good advice. Although I still have a lot to do, I feel less tense.” Diana decides to do the breathing exercise every time she is feeling tense. Relaxation: z makes you feel less tense; z might give you renewed energy; z may make it easier to get tasks done; and z does not have to take much time. MODULE 3 Le ss on 1 . R ed uc in g st re ss in ev er yd ay lif e Reminder iS u p p o rt In te rv e n ti o n M an u al 72 2. Different ways to relax There are different ways you can relax. Try and see which one(s) suit you best. Before you try an exercise ask yourself: “How tense am I feeling”? After the exercise, ask yourself again. This might help you understand whether this type of relaxation helps you feel less tense. In this lesson you will find seven relaxation exercises. The first three exercises will take only a few minutes (i.e. 5 minutes max.). The other exercises will take a little longer (i.e. 10-15 minutes max.). Use the scale below of 1-10 and tick what number describes how tense you are feeling now, 1 is very small amount of tension and 10 is very high amount of tension. VERY SMALL VERY HIGH 1 42 53 6 7 8 9 10 MODULE 3 Le ss on 1 . R ed uc in g st re ss in ev er yd ay lif e Focusing on your breathing is relaxing. By doing a breathing exercise you could reduce tension. This exercise will take: less than 5 minutes. Caution: if you experience difficulty breathing, this exercise might not be the best option for you. This is how you do it: z When sitting down, sit up straight in your chair with your back against the back of your chair. z When standing, stand up straight. z Put both of your feet flat on the surface. z Focus on your breathing. z Keep breathing like you are used to. z Try to feel how you breathe. Put your hand on your stomach to feel how you inhale and exhale. z Exhale from your mouth and pull in your stomach as much as possible. z Follow your breathing in this manner a couple of breaths and then stop the exercise. 1. Relaxation activity - Basic breathing iS u p p o rt In te rv e n ti o n M an u al 73 This exercise will help you feel calm and reduces stress. You will breathe with your stomach according to a rhythm. This exercise will take: 5 minutes. This is how you do it: z Sit straight in a chair and make sure your face and shoulders are relaxed. z Bring your hands to your stomach and breathe into it. z Breathe in for 4 counts and out for 8 counts, at a comfortable pace. z Your stomach should expand with each inhale and contract with each exhale. z Return to your normal breathing and spend one minute just observing yourself breathing and noticing how you feel. z Practice listening to your own thoughts without negative judgement. z If your mind wanders, refocus on breathing and meditation. With this exercise you will feel less tension in your neck. It will also increase the blood flow to your brain. This exercise will take: 5 minutes. This is how you do it: z Make sure to move slowly and with attention. z Bend your neck forward and backward. z Inhale while you lift your head up and back. Exhale while you drop your chin to your chest. z Rotate your chin from side to side. z Inhale when your chin is in the centre. Exhale when you look to the side. z Drop your ear towards your shoulder. z Inhale when you are in the centre. Exhale when you drop your ear to your shoulder. z Repeat 5 times. Relaxation exercise - Neck movements MODULE 3 2. Relaxation activity - Mindful breathing 3. Relaxation activity - Neck movements Le ss on 1 . R ed uc in g st re ss in ev er yd ay lif e iS u p p o rt In te rv e n ti o n M an u al 74 This exercise will take: 5 minutes. This is how you do it: z Sit or lie down comfortably in a quiet place. z Breath slowly. z With each breath, take at least 3 seconds to breathe in and 6 seconds to breath out. z Focus on your breathing and your lower stomach when you breathe until you feel calm and peaceful inside your heart and mind. z Say the word ‘relax’ whenever you breathe out. z Tell yourself that you will start counting down from 20 to 1. You can relax by focusing on your breathing and counting back from 20 to 1. z Tell yourself that you will double your level of relaxation for each and every count, and will be totally relaxed when you reach 1. z Start counting down from 20 to 1 slowly. Say the word ‘relax’ whenever you count (that is, take a deep breath, say ‘20’, breathe out slowly and say ‘relax’, take a deep breath, count ‘19’, breathe out slowly and say ‘relax’, and so on). z Now repeat this exercise but with your eyes closed. Relaxation exercise - Number counting MODULE 3 4. Relaxation activity - Number counting Le ss on 1 . R ed uc in g st re ss in ev er yd ay lif e iS u p p o rt In te rv e n ti o n M an u al 75 You can relax by imagining you are in a place or surrounded by people and things you like. This exercise will take: 5 minutes. Before completing this exercise, take a look at the helpful guidelines below. z Only imagine places, people and things you like. z Imagine what you can hear, feel, smell, and/or taste if you were in that place. z Try to think of very specific details of the place, thing or person. For example, how does the surface of the thing feel and how does it smell? Now try to relax while imagining that you are in a place or with the people or things that you like. This is how you do it: z Sit or lie down comfortably in a quiet place. z Breathe slowly. z With every breath, take at least three seconds to breathe in and at least six seconds to breathe out. z Focus on your breathing and your lower stomach when you breathe until you feel peaceful inside. z Imagine you are in a place or surrounded by things or people you like. z Now do this exercise again but close your eyes. MODULE 3 5. Relaxation activity - Imagery Le ss on 1 . R ed uc in g st re ss in ev er yd ay lif e iS u p p o rt In te rv e n ti o n M an u al 76 This exercise is particularly helpful when your muscles feel tense. This exercise will help you relax by tensing and relaxing your muscles. This exercise will take: 10-15 minutes Caution: if you have any injuries or any other physical limitations, this may not be the best exercise for you. Try one of the other exercises. Below are some general instructions for you to keep in mind. z When you are ready to begin, tighten the muscle group described. Make sure that you can feel the tension, but no pain. Keep the muscle tensed for approximately 5 seconds. z Relax the muscles and keep it relaxed for approximately 10 seconds. It may be helpful to say ‘relax’ as you relax the muscle. z When you have finished the muscle relaxation, remain seated for a few moments allowing yourself to become alert. This is how you do it: z Right hand and forearm: make a fist with your right hand. Hold for 5 seconds and then relax for 10 seconds. Don’t forget to breathe. It might be helpful to inhale while tensing your muscles and exhale while relaxing your muscles. Do the same for your left hand and forearm. z Right upper arm: bring your right forearm up to your shoulder to ‘make a muscle’. Hold for 5 seconds and then relax for 10 seconds. Do the same for your left upper arm. z Forehead: raise your eyebrows as high as they will go, as though you were surprised by something. Hold for 5 seconds and then relax for 10 seconds. z Eyes and cheeks: squeeze your eyes closed. Hold for 5 seconds and then relax for 10 seconds. z Mouth and jaw: open your mouth as wide as you can, as if you are yawning. Hold for 5 seconds and then relax for 10 seconds. MODULE 3 6. Relaxation activity - Muscle relaxation Le ss on 1 . R ed uc in g st re ss in ev er yd ay lif e Please continue the exercise on the following page. iS u p p o rt In te rv e n ti o n M an u al 77 z Neck: be careful as you tense these muscles. Face forward and then pull your head back slowly, as though you are looking up to the ceiling. Hold for 5 seconds and then relax for 10 seconds. z Shoulders: tense the muscles in your shoulders as you bring them up towards your ears. Hold for 5 seconds and then relax for 10 seconds. z Shoulder blades/Back: push your shoulder blades back, trying to almost touch them together, so that your chest is pushed forward. Hold for 5 seconds and then relax for 10 seconds. z Chest and stomach: breathe in deeply, filling up your lungs and chest with air. Hold for 5 seconds and then relax for 10 seconds. z Hips and buttocks: squeeze the muscles in your buttocks. Hold for 5 seconds and then relax for 10 seconds. z Right upper leg: tighten your right thigh. Hold for 5 seconds and then relax for 10 seconds. Repeat for your left upper leg. z Right lower leg: do this slowly and carefully to avoid cramps. Pull your toes towards you to stretch the calf muscle. Hold for 5 seconds and then relax for 10 seconds. Repeat for your left lower leg. z Right foot: curl your toes downwards. Hold for 5 seconds and then relax for 10 seconds. Repeat for your left foot. MODULE 3 6. Relaxation activity - Muscle relaxation (continued) Le ss on 1 . R ed uc in g st re ss in ev er yd ay lif e iS u p p o rt In te rv e n ti o n M an u al 78 Stretching your muscles can help to decrease tension. Stretching exercises are very convenient since you can do them anywhere and anytime. This exercise will take: 10 minutes. This is how you do it: z Stand up, or do this exercise in your chair. z Take a deep breath, all the way down to the bottom of your stomach, and slowly let it out. z As you exhale, feel the tension drain from your body. z Take one more breath and hold it for a moment… and let it out slowly. z With each breath you are becoming more and more relaxed. z Now, gently reach your arms out to the sides as though you were trying to touch the walls. z Relax your shoulders and stretch yourself a little. z Gently reach your arms out in front of you. z Feel the muscles in your back and shoulders loosen up. z Stretch out in front a little further. z And now reach up as high as you can. z Push up your arms towards the sky, as if you were trying to reach the sun. z Again, reach your arms out to the sides as though you were trying to touch the walls, as though you were trying to push them outwards. z Reach out in front of you. z Feel your muscles in your back and shoulders become looser and less tense. z Reach towards the sky one more time. z Reach as high as you can. z Try to touch the sun. z Lower your arms to your sides. MODULE 3 7. Relaxation activity - Total stretching Le ss on 1 . R ed uc in g st re ss in ev er yd ay lif e Please continue the exercise on the following page. iS u p p o rt In te rv e n ti o n M an u al 79 z Now, roll your shoulders back. z Feel the tension drain form your body. z Roll your shoulders back again. One more time roll your shoulders. z Now roll them forward. Forward again. One more time forward. z Now shrug your shoulders, lifting them up and then pushing them down. Shrug your shoulders again. Shrug them one more time. z Now another deep and refreshing breath and exhale all of the tension in your body. z Take one more breath…and exhale letting go of any remaining tension. MODULE 3 7. Relaxation activity - Muscle relaxation (continued) Le ss on 1 . R ed uc in g st re ss in ev er yd ay lif e iS u p p o rt In te rv e n ti o n M an u al 80 You can take some time to relax at any time of the day and in any place. Let’s look at an example Diana: relaxing while waiting in line Diana often feels tense when there is a long line in the store, as she is aware she still has many other things to do. She decides to do the breathing exercise while waiting in line. Afterwards, she feels less tense. You can also plan a specific time to relax, for example every day after lunch. You can choose what suits you best. If necessary, you can use a reminder to make sure that you do not forget to take some time to relax. 3. Relaxing at any time and any place z You can take some time to relax anywhere and at any time of the day. z Set a goal: try to do a relaxation exercise at least once a day. z You can plan a specific time to relax every day (if necessary, use a reminder). z You will benefit from having renewed energy and a better mood after doing the relaxation exercises. z Even a brief exercise can make a difference! z You will also be able to reduce feelings of tension and continue caring for your family member or acquaintance over the long term. MODULE 3 Keep in Mind Le ss on 1 . R ed uc in g st re ss in ev er yd ay lif e iS u p p o rt In te rv e n ti o n M an u al 81 Was this helpful for you? If not, there might be different reasons why relaxation was not helpful to you: z Perhaps you could not focus on relaxing. z Try again at another time! z Maybe you like an exercise, but you need some more practice to really benefit from it. Try to do this exercise regularly. z The exercise you chose may not have suited you. Try a different exercise! z The exercise you chose was too short. z Try this exercise again or do another one! If the exercises are still not helping you after these tips, try to do an activity you enjoy. Have a look at Lesson 2. Making time for pleasant activities in this module to find out which activities you may enjoy. MODULE 3 Le ss on 1 . R ed uc in g st re ss in ev er yd ay lif e You finished this lesson, well done! iS u p p o rt In te rv e n ti o n M an u al 82 1. The importance of pleasant activities Pleasant activities are important because caregiving can last a long time and doing pleasant activities can help you to relax and continue providing care. Pleasant activities can be small things such as going for a walk or talking to a friend. This may not always be easy, because providing care can be time- consuming and someone might have to take over the care for your family member or acquaintance while you are not there. Let’s see how Amy, Jose, and Umit experience caregiving and the importance of planning pleasant activities. Amy Amy takes care of her mother who is living with dementia. She dedicates most of her time to caregiving and rarely takes time for herself. She does not engage in any pleasant activities. Amy notices that recently she is more tired than usual and feels that she is not able to care for her mother as she did before. Why is this lesson important? It is important to take care of yourself while caring for another person. This lesson will help you to keep providing care. How will this lesson help me? This lesson will help you to take time for yourself and do pleasant activities to relax. What will I learn? 1. The importance of pleasant activities. 2. Barriers to doing pleasant activities. 3. Making pleasant activities achievable. 4. Doing pleasant activities together. MODULE 3 Le ss on 2 . M ak in g tim e f or p lea sa nt ac tiv iti es Lesson 2. Making time for pleasant activities iS u p p o rt In te rv e n ti o n M an u al 83 Jose Jose takes care of his brother who is living with dementia. Jose does not get a lot of sleep and rarely has time for afternoon naps. He recently started asking his sister to come by and help with caregiving so he can take a nap and read a magazine each afternoon. Umit Umit takes care of his wife who is living with dementia. Recently, he has hired a professional carer who stops by three times a week to help him care for her. When the professional carer is there, Umit reads the newspaper or goes for a walk. z If you are not able to make time for yourself, you can get very tired which may make you less able to continue providing care. z You can ask family and friends to help care for the person living with dementia so that you can take some time for yourself. z If it is affordable, you could hire a professional carer to help you care for your family member or friend so you can take some time for yourself. MODULE 3 Keep in Mind Le ss on 2 . M ak in g tim e f or p lea sa nt ac tiv iti es iS u p p o rt In te rv e n ti o n M an u al 84 Which pleasant activities would you like to do? Once you have some time for yourself, it can be hard to think of the things you would like to do. There are many possibilities and even in a short amount of time, you can still do an activity that you like. In this exercise you will make a list of pleasant activities that you would like to do. Please check at least two activities that you would like to do more often. If your favourite activity is not listed below, use the ‘other’ box to write your own activity. „ Do a crossword puzzle „ Watch TV „ Visit friends or family „ Cook „ Listen to music „ Do crafts „ Read „ Take a nap „ Go shopping „ Take a walk „ Exercise „ Other: 1. Activity MODULE 3 Le ss on 2 . M ak in g tim e f or p lea sa nt ac tiv iti es iS u p p o rt In te rv e n ti o n M an u al 85 2. Barriers to doing pleasant activities Let’s go back to Amy’s example Amy dedicates most of her time to caring for her mother who has dementia. She does not receive any help and is tired all the time. She is struggling to care for her mother and has stopped doing the things she likes because she feels that she does not have enough time. Eventually, Amy is so tired that she decides to ask her friend for help. She is now able to make some time for herself and engage in pleasant activities. Amy feels more energized afterwards. She also feels that she is better able to handle the care for her mother as a result. Other reasons you may feel unable to do pleasant activities Not having time was the reason that Amy did not feel as though she could do any pleasant activities. However, there are several other reasons. MODULE 3 Le ss on 2 . M ak in g tim e f or p lea sa nt ac tiv iti es iS u p p o rt In te rv e n ti o n M an u al 86 Do you recognize any of the following? Please select any that may apply to you. „ No time. You might feel that you are too busy and not able to find any spare time. It is really important that you try to make some time during the day or in the evening to do something you enjoy. If you have little time, there are some pleasant activities that do not take up a lot of time and which you can fit in around your day. „ No energy. You might have less energy because caregiving can be tiring. Although it is hard to imagine, it is likely that you will feel more energized after doing something you like. „ No money. You might think that you have to spend lots of money to do something pleasant. Pleasant activities do not have to be costly. You can keep the activities as simple as you want them to be. For example, things like meeting a friend for a cup of tea or going for a walk by yourself do not cost money. „ Not in the mood. You might not feel like doing pleasant activities. Although it is hard to imagine, it is likely that your mood will be better after doing something you like. On the other hand, not doing pleasant activities will likely worsen your mood. „ Physical limitations. You might think that if you have physical limitations, you are not able to do a pleasant activity. If you have physical limitations, think of activities that you can do despite your limitations. There are many possibilities, such as reading, playing a game or talking to a friend. „ Guilt. You might feel guilty because you will feel that you are running away from the person you care for. You need time to do things you like, relax and recharge so that you can provide adequate care for them. Being a good carer means taking care of yourself as well. 2. ActivityMODULE3 Le ss on 2 . M ak in g tim e f or p lea sa nt ac tiv iti es iS u p p o rt In te rv e n ti o n M an u al 87 Suggestions for doing pleasant activities z Consider asking someone to help you with some of your day-to-day tasks. z Consider the impact of not doing certain tasks at that moment. For example, what is the impact of not cleaning the house every day? You may realize that you can be more flexible and have more time as a result. z Try to do one activity at a time and finish the things you have started as much as possible. If you leave something unfinished, it may make you feel dissatisfied. You may not be able to focus entirely on your next activity. You could feel more energized if you complete an activity before taking on another. z Think about ways to better manage your time. Consider using an agenda or calendar. z Talk to someone about how you might be able to better manage your time. Seeking another opinion or suggestions may be helpful. MODULE 3 Le ss on 2 . M ak in g tim e f or p lea sa nt ac tiv iti es Consider asking for help. iS u p p o rt In te rv e n ti o n M an u al 88 Now rate how achievable it would be for you to do the pleasant activities that you chose earlier in this lesson (see the exercise on page 84). 3. Making pleasant activities achievable Read every activity and consider whether the activity is: 1. unachievable; 2. unlikely to be achievable; 3. somewhat achievable; 4. achievable; 5. very achievable. Please check at least two activities that you would like to do more often. If your favourite activity is not listed below, use the ‘other’ box to write your own activity. „ Do a crossword puzzle „ Watch TV „ Visit friends or family „ Cook „ Listen to music „ Do crafts „ Read „ Take a nap „ Go shopping „ Take a walk „ Exercise „ Other: MODULE 3 3. Activity Le ss on 2 . M ak in g tim e f or p lea sa nt ac tiv iti es Unlikely to be achievable Somewhat achievable Achievable Very achievableUnachievable iS u p p o rt In te rv e n ti o n M an u al 89 4. Doing pleasant activities together It can be very rewarding to do pleasant activities with the person that you care for. However, it might be difficult at first to think of pleasant activities that are suitable for both of you. In this exercise we will make a list of the pleasant activities that you can do with the person you care for. First, take a look at Jose’s experience from the previous exercise. Jose Jose takes care of his brother who is living with dementia. In addition to taking a nap while his sister takes care of his brother, Jose takes his brother out for walks around the neighbourhood. His brother enjoys the walks and Jose is also able to get some exercise and fresh air. Which of your activities can you do today? It is a good idea to start with your pleasant activities as soon as possible and incorporate them into your routine. Which of your activities can you do today? If it is inconvenient to start an activity today, think about the pleasant activities you could do tomorrow. Start with small goals and add more pleasant activities after you feel successful with your first try. Rethink the activities that you would like to do to help make them more achievable. z Pleasant activities should be achievable. z There are different reasons why you can feel that pleasant activities are not achievable. z There are ways to undertake pleasant activities despite these reasons. Remember MODULE 3 Le ss on 2 . M ak in g tim e f or p lea sa nt ac tiv iti es iS u p p o rt In te rv e n ti o n M an u al 90 Please select at least one activity that you would like to do together more often. If an activity is not listed below, use the ‘other’ box at the bottom of the list to add the activity that you would like to do. Keep in mind that despite the challenges, pleasant activities are good for you and are necessary to ensure that you are able to keep providing care to your family member or acquaintance. What would you like to do more often? Take a look at the list below for examples that you can do with the person that you care for. „ Listen to music „ Play a musical instrument „ Take a relaxing walk „ Listen to or read stories, newspaper articles, poems, etc. „ Go out to eat together „ Cook and prepare snacks „ Watch birds or animals „ Do handiwork or crafts „ Look at photos „ Watch the clouds or explore nature „ Recall and discuss happy memories „ Have friends over to visit „ Other: Activity MODULE 3 Le ss on 2 . M ak in g tim e f or p lea sa nt ac tiv iti es iS u p p o rt In te rv e n ti o n M an u al 91 MODULE 3 Le ss on 2 . M ak in g tim e f or p lea sa nt ac tiv iti es You finished this lesson, well done! iS u p p o rt In te rv e n ti o n M an u al 92 Why is this lesson important? Your thoughts determine how you feel. Unhelpful thoughts can make us feel bad. How will this lesson help me? This lesson will help you think differently and change your unhelpful thoughts into helpful ones. What will I learn? 1. Thoughts determine how we feel. You cannot change what happens, but you can change your response. 2. Learn to think differently by changing unhelpful thoughts into helpful ones. 3. Thinking differently makes you feel better. 1. Thoughts determine how we feel There are different ways to deal with stressful events. One way is to think differently. Let’s look at an example. MODULE 3 Le ss on 3 . T hi nk in g di ffe re nt ly Lesson 3. Thinking differently It is not an event that makes you feel angry, sad, happy or guilty, it is how you think about it. An event can be anything. Here are a few examples: z The person you care for becomes angry when you ask him/her something. z Your family member who promised to help you does not turn up or cancels on you. z The person you care for cannot find something. z Your family member is blaming you for not providing the right care. Many people think that their feelings are a direct consequence of an event. However, it is the way that you think about the event that determines how you feel. iS u p p o rt In te rv e n ti o n M an u al 93 What do you think Jo should do? Please check all the responses that you feel are appropriate. „ Tell Max that she cannot help him search now and leave. „ Search for the keys until she finds them. „ Tell Max that he should be more careful not to lose his keys in the future. „ Think to herself, “Max has dementia and is sometimes worried when he loses things. I can take some time to help and then go.” Then call her friend and explain that she will come later. MODULE 3 1. Check your understanding Feelings and thoughts. z There are many different ways of dealing with events. z Negative thoughts can make us feel bad. z By thinking differently, you might feel better and be able to better deal with events. Keep in mind Le ss on 3 . T hi nk in g di ffe re nt ly Lost keys Jo is married to Max who is living with dementia. She is about to leave the house to visit a friend. Max says, “I can’t find my keys! You cannot leave me without keys!” Jo thinks to herself: “I cannot leave him alone anymore.” She starts to feel miserable. iS u p p o rt In te rv e n ti o n M an u al 94 Jo thinks to herself when Max cannot find his keys: “I cannot leave Max alone anymore.” This makes her feel miserable. This means that Jo is thinking in an unhelpful way. Unhelpful thoughts can make it harder to respond in useful ways to situations like this. Instead, Jo could think: “Max has dementia and is sometimes worried when he loses things. I can take some time to help and then go.” This different way of thinking will probably make Jo feel better and help her stay calm and compassionate. Helpful thoughts can make it easier to respond in useful ways to situations like these. Jo’s unhelpful and helpful thoughts z It is not the event itself that makes you feel angry, sad, happy or miserable. z Helpful or unhelpful thoughts can determine how you respond to a situation. z By changing your thoughts, you could help change the way you feel. MODULE 3 Keep in mind Le ss on 3 . T hi nk in g di ffe re nt ly iS u p p o rt In te rv e n ti o n M an u al 95 Can you indicate which of Aryan’s thoughts may help make her feel better? Aryan might think… „ Making time for myself helps me to provide better care. „ I am a bad carer if my family member is not always happy. „ Maybe the person living with dementia will become better. „ No one understands how hard it is to care. „ No one can provide the care the way I do. „ Asking others for help can help me to share the duties of care. „ Dementia is a disease, it is not my or anyone else’s fault. Unhelpful thoughts make you feel bad Aryan has been caring for her family member who is living with dementia for several years now. She has many thoughts. Some make her feel worse, some make her feel better. z Unhelpful thoughts can make you feel bad. z Helpful thoughts are important to feel better and will assist you in dealing with situations in a more useful way. z To feel better, it is important to identify unhelpful thoughts. MODULE 3 Keep in mind2. Check your understanding Thoughts that can make you feel better. Le ss on 3 . T hi nk in g di ffe re nt ly iS u p p o rt In te rv e n ti o n M an u al 96 How do you think Xavier is feeling? Please check all the responses that you feel are appropriate. „ Angry „ Guilty „ Happy „ Lonely „ Sad „ Supported „ Upset 2. Learn to think differently by changing unhelpful thoughts into helpful ones What if Xavier instead thinks to himself, “if Gabriel thinks I need help, he must care about me and my father and wants to make sure we are doing well”? MODULE 3 3. Check your understanding How thoughts influence our feelings. Le ss on 3 . T hi nk in g di ffe re nt ly Xavier meets his friend Gabriel Xavier takes care of his father, who is living with dementia. While he is shopping, he meets his friend Gabriel, who asks, “How are you? Do you need any help caring for your father?” Xavier thinks to himself, “if Gabriel thinks I need help, he must think that I am a bad carer”. How does Xavier feel now? Please check all the responses that you feel are appropriate. „ Angry „ Guilty „ Happy „ Lonely „ Sad „ Supported „ Upset 4. Check your understanding Match feelings to a helpful thought. Sometimes you cannot change the things that happen (events), but you can change your response (thoughts). Keep in mind iS u p p o rt In te rv e n ti o n M an u al 97 „ I have to do everything alone. „ The person I care for does not care about me anymore. „ When the person I care for is not happy, it means that I am a bad carer. „ Maybe the person I care for will get better. „ I must always be available for the person I care for. „ I should not consider my own needs if I want to be a good carer. „ No one understands how hard it is to care. „ No one can provide care the way I do. „ He/she being diagnosed with dementia has complicated my life. „ I have no time for others as a carer. „ I feel sorry for the person I care for. „ Other people are better off than the person I care for and I. „ Other: MODULE 3 Le ss on 3 . T hi nk in g di ffe re nt ly Which unhelpful thoughts do you have? Please check the unhelpful thoughts that you have or provide additional examples. In an earlier example you indicated which thoughts are helpful and which may be unhelpful. Below you will find a list of unhelpful thoughts. 1. Activity iS u p p o rt In te rv e n ti o n M an u al 98 Changing your unhelpful thoughts to helpful ones can make you feel better.In an earlier example you indicated which thoughts are helpful and which may be unhelpful. Below you will find a list of helpful thoughts. Please check the helpful thoughts that you have or provide additional examples. „ It is okay to take time to relax as it will help me to provide a good standard of care. „ Sharing my feelings with others helps to take the pressure off. „ Asking for help from others can help me to share the burden of care. „ Making time for myself helps me to provide better care. „ Dementia is a disease; it is not my or anyone else’s fault. „ I do not have to give others their way all the time. „ Other: Which helpful thoughts do you have? MODULE 3 Keep in mind Le ss on 3 . T hi nk in g di ffe re nt ly 2. Activity iS u p p o rt In te rv e n ti o n M an u al 99 3. Thinking differently makes you feel better You cannot change the things that happen, but you can change your response. In other words, you cannot change events but you can change your thoughts. Example 1: Wei Wei takes care of his wife Xu, who is living with dementia. He writes the following: Name: Wei Yesterday my wife Xu and I visited some friends. We had tea together. Xu dropped her cup on the floor. When they started to clean the floor, Xu did not help, but she stood in the way. She did not apologise for her behaviour, but laughed. Our friends are upset with my wife and won’t invite us to their house again. My wife has dementia and is unable to think and act in the same way that she used to. Our friends won’t blame my wife as I have explained to them that she has dementia and that her thinking has declined. Instead of feeling worried and ashamed, I would have felt happy about the day we spent with our friends. What was the event that made you feel upset or miserable? What were your unhelpful thoughts? What would be more helpful to think? How could the helpful thoughts make you feel? MODULE 3 Le ss on 3 . T hi nk in g di ffe re nt ly iS u p p o rt In te rv e n ti o n M an u al 100 Example 2: Helen Helen takes care of her brother Matty, who is living with dementia. She writes the following: MODULE 3 Name: Helen A week ago, our sister came to visit us. At the end of the day, I said to Matty, “it was a great day, don’t you think?” Then he said that he was not sure, because he could not remember exactly what we had been doing. He said that he was tired and wanted to sleep. Nothing we do is worthwhile because Matty forgets everything. Everything is ruined because of his dementia. Even though he cannot remember what we did, I know that he had a great day too, and that is what counts. He smiled a lot today and kept saying how nice it was that our sister came. Instead of feeling sad and miserable, I would have felt happy about the day we spent with our sister. What was the event that made you feel upset or miserable? What were your unhelpful thoughts? What would be more helpful to think? How could the helpful thoughts make you feel? Le ss on 3 . T hi nk in g di ffe re nt ly iS u p p o rt In te rv e n ti o n M an u al 101 Now it’s your turn. In the next exercise you will work to change your unhelpful thoughts into helpful ones. Try to think of a recent event that made you feel upset and answer the questions below. You can refer back to the examples on the previous page for some help. MODULE 3 Le ss on 3 . T hi nk in g di ffe re nt ly Name: What was the event that made you feel upset or miserable? What were your unhelpful thoughts? What would be more helpful to think? How could the helpful thoughts make you feel? iS u p p o rt In te rv e n ti o n M an u al 102 Name: What was the event that made you feel upset or miserable? What were your unhelpful thoughts? What would be more helpful to think? How could the helpful thoughts make you feel? Practice makes perfect. Do you want to try one more time? Please answer the questions below for a different event. MODULE 3 Le ss on 3 . T hi nk in g di ffe re nt ly iS u p p o rt In te rv e n ti o n M an u al 103 You finished this lesson, well done! MODULE 3 There are events in which feeling upset, miserable, sad or angry is inevitable. Examples include: if the person you care for needs to go to the hospital or if you lose a dear friend or family member. To change your thoughts in such events would not do justice to your feelings. Keep in mind Le ss on 3 . T hi nk in g di ffe re nt ly z You cannot change what happens, but you can change your response. z You can learn to think differently by changing your unhelpful thoughts into helpful ones. z Thinking differently makes you feel better. Let’s review what you have learned in this lesson iS u p p o rt In te rv e n ti o n M an u al 104 8 Tell Max she cannot help him search now and leave. This is bad advice. Max has dementia and is feeling worried. He could be very upset if Jo leaves the house right now. 8 Search for the keys until she finds them. This could be helpful. Max might feel safer if he has the keys. However, this may mean Jo misses meeting her friend and is left feeling miserable. 8 Tell Max that he should be more careful not to lose his keys in the future. This is not such good advice. Max has dementia, he cannot help misplacing things. What do you think Jo should do? 9 ✓Think to herself, “Max has dementia and is sometimes worried when he loses things. I can take some time to help and then go.” Then call her friend and explain that she will come later. This is good advice. It is not the fact that Max has lost the keys that is making Jo miserable, but her concern that she always needs to help Max and cannot leave him alone anymore. After Jo has called her friend, she can help Max search for the keys, which will make him feel safer. Then she can go to see her friend. 1. Check your understanding Feelings and thoughts. ANSWERS - CARING FOR ME Lesson 3. Thinking differently AN SW ER S - C AR IN G FO R M E • L es so n 3 iS u p p o rt In te rv e n ti o n M an u al 105 9 Making time for myself helps me to provide better care. This is a helpful thought. No one should feel guilty when taking time for themselves. It might help the carer to continue providing care in the long term. 8 I am a bad carer if my family member is not always happy. This thought will make Aryan feel unhappy and sad. The mood of the person living with dementia does not depend solely on the carer. For example, mood can also be related to dementia, depression, functional ability or personality. 8 Maybe the person living with dementia will get better. This thought may make Aryan feel disappointed as people with dementia continue to decline. There are many diseases that cause dementia. Unfortunately, there is no cure for any of these diseases yet. 9 Dementia is a disease, it is not my or anyone else’s fault. This thought is helpful and might prevent feelings of guilt. ✓ Which of Aryan’s thoughts may help make her feel better? 8 No one understands how hard it is to care. This thought may make Aryan feel upset, isolated and lonely. There might be people who do not understand how hard it is to care. However, talking to other people may help them better understand what dementia is and help you to take some pressure off. 8 No one can provide the care the way I do. This thought could make Aryan feel lonely, isolated and under a lot of pressure. Although others may provide care in a different way, that does not mean that it is always of a lower standard. It is important to involve others in caring for a person living with dementia, to avoid getting overwhelmed. 9 ✓Asking others for help can help me to share care duties. This is a helpful thought that may make Aryan feel more in control. Involving other people in caregiving has lots of potential benefits. For instance, the carer will be able to take breaks more regularly and provide care for a longer time. AN SW ER S - C AR IN G FO R M E • L es so n 3 2. Check your understanding Thoughts that can make you feel better. iS u p p o rt In te rv e n ti o n M an u al 106 Xavier thought, “if Gabriel thinks that I need help, he must think I am a bad carer.” How do you think Xavier is feeling? This is an unhelpful thought that may make Xavier feel: 9 upset 9 lonely 9 sad 9 angry 9 guilty Xavier thought, “if Gabriel thinks I need help, he must care about my father and want to make sure that we are doing well”. How does Xavier feel now? This is a helpful thought that may make Xavier feel happy or supported. AN SW ER S - C AR IN G FO R M E • L es so n 3 3. Check your understanding How thoughts influence our feelings. 4. Check your understanding Matching feelings to a helpful thought. M od ul e 4 . P ro vid in g ev er yd ay ca re PROVIDING EVERYDAY CARE Lesson 1. Eating and drinking - more pleasant mealtimes Lesson 2. Eating and drinking - preventing health problems Lesson 3. Toileting and continence care Lesson 4. Personal care Lesson 5. An enjoyable day 4 MODULE iS u p p o rt In te rv e n ti o n M an u al 108 1. Making mealtimes more pleasant Engaging people with dementia in simple tasks around mealtime helps to make the most of people’s skills, promote feelings of self-worth, and enjoy the mealtime. Why is this lesson important? Dementia can affect eating and drinking in various ways depending on the stage of dementia and other health conditions. How will this lesson help me? By learning how to help create more pleasant mealtimes and prevent dehydration. What will I learn? 1. Making mealtimes more pleasant. 2. Promoting a good mealtime atmosphere. 3. Health conditions that affect eating and drinking. 4. Preventing dehydration. MODULE 4 Le ss on 1 . E at in g an d dr in ki ng - m or e p lea sa nt m ea lti m es Lesson 1. Eating and drinking - more pleasant mealtimes iS u p p o rt In te rv e n ti o n M an u al 109 Let’s look at an example MODULE 4 Le ss on 1 . E at in g an d dr in ki ng - m or e p lea sa nt m ea lti m es How would you advise Siya’s family to deal with this situation? Please select the answer that you think is correct from the list. „ Bring Siya’s dinner to her room. „ Demand that Siya joins them for dinner. „ Let Siya help with meal preparation and cleaning activities. 1. Check your understanding Making mealtimes more pleasant. Siya was a housewife and cooked every day for her family for many years. Recently, she lost her husband and now lives with one of her sons. Adi, her daughter-in-law, provides all the cooking in the new household. Siya has been very sad in her new home and says she’s not hungry when she is offered food. She does not join the family for dinner. iS u p p o rt In te rv e n ti o n M an u al 110 Mealtime activities Please select all activities from the list below that you think the person you care for can still engage in and would enjoy. Now, try to think about involving the person that you care for around mealtimes. Mealtime activities Example Washing or drying dishes Shopping together Meal preparation Preparation of the table Cleaning the table „ Let the person living with dementia choose what food and drinks they like to buy for breakfast, lunch and dinner. „ Let the person living with dementia help chopping, stirring, or cooking. „ Let the person living with dementia lay the table for breakfast, lunch and dinner. „ Let the person living with dementia remove everything from the dining table and wipe the table. „ Let the person living with dementia put dishes in the sink or wash and dry the dishes. 1. Activity MODULE 4 Le ss on 1 . E at in g an d dr in ki ng - m or e p lea sa nt m ea lti m es If you think that the person you care for can still engage in and would enjoy any of the listed activities, perhaps you could ask or assist them in trying these activities the next time you have a meal. iS u p p o rt In te rv e n ti o n M an u al 111 2. Promoting a good mealtime atmosphere Mealtime is a good opportunity for carers to show their care and support for the person living with dementia. An enjoyable mealtime atmosphere may help encourage them to eat and drink. Let’s look at an example again. Spilling food Shang has Alzheimer’s disease and lives with his oldest son since his wife passed away a year ago. The family now has four generations who eat together at the table. Shang sees the mealtime as the best time of the day. Recently, Shang’s hands have started to tremble and he often spills or drops food on the table and the floor. How would you advise Shang’s son to deal with this situation? Please check the responses that you feel are appropriate. „ Buy adaptive eating and drinking aids from the shop for Shang. „ Set up a separate table for his father to eat in his own bedroom, because spilling and dropping food may make the family irritated. „ Organize a family meeting to ask all family members to think of more positive and constructive ways to respond to the situation at mealtimes. 2. Check your understanding Promoting a good mealtime atmosphere. MODULE 4 Le ss on 1 . E at in g an d dr in ki ng - m or e p lea sa nt m ea lti m es iS u p p o rt In te rv e n ti o n M an u al 112 Health condition Changes that you may have observed Recommended actions you may try Poor appetite Toothache Poorly fitting artificial dentures „ Does not want to eat the meal „ Eats only small amounts of food „ Takes a long time to eat a small amount of food „ Refuses to eat and drink „ Is restless „ Has a facial expression indicating pain „ Refuses to eat and drink „ Is restless „ Has a facial expression indicating pain „ Refuses to wear dentures „ Throws dentures on the floor z Make food appealing: use different textures, flavours, smells, tastes, sounds and colours that the person enjoys z Eat with the family, rather than alone z Play soft music that they like during mealtime z Increase physical activities that they can do during the day z Ask whether the person is in pain z Ask them to point out the area of pain z Check whether there are loose teeth, mouth ulcers, etc. z Seek help from a doctor or dentist z See above for toothache z Check that the dentures are in good condition and fit properly Health conditions Common health conditions can affect eating and drinking. The activity below teaches you how to improve these conditions, if they are present. 2. Activity Le ss on 1 . E at in g an d dr in ki ng - m or e p lea sa nt m ea lti m es MODULE 4 iS u p p o rt In te rv e n ti o n M an u al 113 Diarrhoea Side effects from medications Does not have bowel movement for more than 7 days „ Liquid faeces „ Increased number of bowel movements „ Incontinency and difficulty controlling bowel movements „ Nausea, vomiting, liquid faeces or constipation „ Does not want to have a meal „ Eats only small amounts of food „ Hard and dry faeces „ Difficulty passing faeces/straining „ Having a feeling of incomplete bowel movements „ Becomes anxious or agitated „ Hard stomach „ Nausea and vomiting z Seek help from a doctor z Seek help from a doctor z Seek help from a doctor z Upon resolution of the problem: { Increase fibre in diet { Increase drinking of fluids { Increase physical activity Body pain „ Refuses to eat and drink „ Is restless „ Unusual body postures „ Has a facial expression of pain z Ask whether the person is in pain z Ask them to point out the area of pain z Seek help from a doctor Health condition Changes that you may have observed Recommended actions you may try 2. Activity Le ss on 1 . E at in g an d dr in ki ng - m or e p lea sa nt m ea lti m es MODULE 4 iS u p p o rt In te rv e n ti o n M an u al 114 Weight loss Weight gain Depression „ Forgets to eat „ Eats smaller amounts of food „ Eats regular amounts of food but still loses weight „ Eats all the food that is served „ Eats more snacks than before because they forget that they already ate „ Is obsessed with food „ Refuses to eat or says they are not hungry „ Eats small amounts of food „ Has no interest in food z Increase the amount of food z Provide foods that they will like z Increase flavourful foods as the person’s taste might be impaired z Seek advice from a doctor z Model eating and drinking z (i.e. eat and drink with the person) z Serve smaller portions z Remove the plate when the person indicates that they are full z Provide low calorie snacks z Seek help from a doctor Memory loss; forgets to eat or drink „ Asks when the next meal is even if it already happened „ The person says that they are hungry even if they already ate z Remind the person to eat and drink regularly z Model eating and drinking (i.e. eat and drink with the person) z Provide snacks between meal times Health condition Changes that you may have observed Recommended actions you may try 2. Activity Le ss on 1 . E at in g an d dr in ki ng - m or e p lea sa nt m ea lti m es MODULE 4 iS u p p o rt In te rv e n ti o n M an u al 115 4. Preventing dehydration People living with dementia have a higher risk of being dehydrated. There can be several reasons for this: z inability to explain their needs; z decreased thirst sensation; z not offered enough to drink; and, z swallowing problems in the late stage of dementia. The person you care for needs to be encouraged to drink 8-10 glasses (1500-2000 millilitres) of fluid (water, iced lollies, soup and juice, not including tea or coffee every day. Severe dehydration Ben has Alzheimer’s disease, but he is able to eat and drink without assistance from his wife, Mary. Ben likes to walk a lot. One hot afternoon, Mary also notices that Ben seems very tired, walks very slowly and then collapses on the floor. Ben is sent to the local hospital’s Emergency Department and is diagnosed with dehydration. After treatment in the hospital, Ben has recovered and is able to go home again. How would you advise Mary to deal with the situation after Ben is discharged home? Please select all the responses that you feel are appropriate. „ Mary needs to let Ben make the decision about when to drink. „ Mary needs to ensure that Ben drinks 8-10 glasses of water during the day. „ Mary records the time and the amount of fluid Ben actually consumes. 3. Check your understanding Severe dehydration. MODULE 4 Le ss on 1 . E at in g an d dr in ki ng - m or e p lea sa nt m ea lti m es iS u p p o rt In te rv e n ti o n M an u al 116 Timetable for eating and drinking The timetable below is for you to remind the person living with dementia to eat and drink. Give them the opportunity to choose what to drink. Time of day Type of fluid (e.g. water) Amount of fluid (e.g. 3 glasses) Morning - Noon Noon - Dinnertime Dinnertime - Bedtime 3. Activity WARNING! If the person you care for is not allowed fluids due to a heart condition, you need to follow the doctor’s order regarding how much to drink. MODULE 4 Le ss on 1 . E at in g an d dr in ki ng - m or e p lea sa nt m ea lti m es iS u p p o rt In te rv e n ti o n M an u al 117 Let’s review what you have learned z The person you care for needs to be encouraged and supported to eat and drink. z You can engage the person you care for in a variety of mealtime activities to create a pleasant mealtime for them, which helps to improve self-worth and a feeling of achievement. z Eating and drinking can be facilitated by modifying food, utensils and the environment. z You can maintain good eating and drinking for the person you care for by improving their health condition. Seeking assistance from health professionals might be necessary. z To help prevent dehydration, it is important to prompt the person living with dementia to drink. z Record and monitor the amount of fluid they consume. MODULE 4 Le ss on 1 . E at in g an d dr in ki ng - m or e p lea sa nt m ea lti m es You finished this lesson, well done! iS u p p o rt In te rv e n ti o n M an u al 118 iS u p p o rt In te rv e n ti o n M an u al How could Siya’s family deal with the situation? 8 Bring Siya dinner in her room. This is not helpful because it might further isolate Siya from her family. Siya may not feel welcome in the new home. She has lost her husband, her own home and now also her previous roles as cook and housekeeper. 8 Demand that Siya joins them for dinner. This is not such a good response because it may make Siya angry or cause her to further withdraw. 9 Siya’s family should let her help with the meal preparation and cleaning activities. This is a good response because her family knows Siya still enjoys cooking and should therefore support her to continue engaging in the activities that she likes and is still able to do. AN SW ER S - P RO VI DI NG E VE RY DA Y CA RE • Le ss on 1 1. Check your understanding Making mealtimes more pleasant. ANSWERS - PROVIDING EVERYDAY CARE Lesson 1. Eating and drinking - more pleasant mealtimes iS u p p o rt In te rv e n ti o n M an u al 119 iS u p p o rt In te rv e n ti o n M an u al 9 Buy adaptive eating and drinking aids from the shop for Shang. This is a good response because Shang’s son recognises that his father is no longer able to manage eating and drinking using the usual utensils. By providing other utensils he is trying to solve this problem. 8 Set up a separate table for his father to eat in his own bedroom, because spilling and dropping food may make the family irritated. This is not helpful because separation will make Shang feel sad or angry, which might prevent him from eating and drinking properly. 9 Organise a family meeting to ask all family members to think of more positive and constructive ways to respond to the situation at mealtimes. This is a good response because Shang’s son is trying to provide a positive mealtime atmosphere for everyone. 2. Check your understanding Promoting a good mealtime atmosphere. How could Shang’s son deal with the situation? AN SW ER S - P RO VI DI NG E VE RY DA Y CA RE • Le ss on 1 iS u p p o rt In te rv e n ti o n M an u al 120 iS u p p o rt In te rv e n ti o n M an u al How could Mary deal with this situation after Ben is discharged home? 8 Mary needs to let Ben make the decision about when to drink. This answer is not so good even though she is respecting Ben’s autonomy. Since people with dementia have decreased thirst sensation, it could be dangerous to leave it up to them whether to drink or not without reminding them. If not reminded, Ben may get dehydrated again and collapse. 9 Mary needs to ensure that Ben drinks 8-10 glasses of water during the day. This is a good response. Mary notices that Ben may forget to drink, so she is trying to help her husband drink enough water every day. 9 Mary records the time and the amount of fluid Ben actually consumes. This is a good response. It can be helpful to establish a routine and record the number of glasses Ben drinks from breakfast time to dinner time. Drinking after dinner time may potentially increase night time visits to the bathroom. 3. Check your understanding Severe dehydration. AN SW ER S - P RO VI DI NG E VE RY DA Y CA RE • Le ss on 1 iS u p p o rt In te rv e n ti o n M an u al 121 1. Improve eating and prevent weight loss In the late stages of dementia, a person living with dementia may experience difficulty chewing and swallowing. Reduced abilities to smell, taste and see may also happen due to ageing and dementia. These can have a negative impact on the person’s health. Depression and changes in eating patterns may also impair eating and digestion. Let’s look at an example Chiu has been living with dementia for 9 years and is cared for by her daughter, Ling. Recently, Ling notices that her mother sleeps during the day and is very difficult to wake and assist with her meals during the normal mealtimes. Ling believes that her mother is not hungry and does not want to disturb her sleep. A recent check-up showed that Chiu has lost 2.5 kg since the last check-up 5 weeks ago (5% of her body weight). Why is this lesson important? Dementia can affect eating and drinking in various ways depending on the stage of dementia and other health conditions. How will this lesson help me? By learning how to improve eating and drinking, prevent weight loss and promote drinking and eating safely. What will I learn? 1. Improve eating and prevent weight loss. 2. Help the person you care for to eat safely and prevent aspiration pneumonia. MODULE 4 Le ss on 2 . E at in g, d rin ki ng a nd p re ve nt in g he al th p ro bl em s Lesson 2. Eating, drinking and preventing health problems iS u p p o rt In te rv e n ti o n M an u al 122 What would you advise Ling to do to improve Chiu’s eating? Please select all the responses that you feel are appropriate. „ Be flexible to have meals when her mother is awake. „ In a diary, keep a record of what and how often her mother eats. „ Ensure Chiu has access to foods she enjoys eating. 2. Help the person you care for to eat safely and prevent aspiration pneumonia People with dementia may experience the problems listed below. z People with dementia may not be able to judge what can or cannot be eaten. They may eat inedible materials that are within reach when feeling hungry. Make sure to keep inedible materials and chemicals in safe places. z If the person is in the late stages of dementia, they may experience swallowing difficulties that can cause a lung infection called aspiration pneumonia. Aspiration pneumonia occurs when food is swallowed in the wrong way and goes into the person’s lungs instead of their stomach. This can then cause an infection. Eating, drinking and feeding methods may need to be modified to prevent this life-threatening problem. 1. Check your understanding How to improve eating and prevent weight loss. MODULE 4 Le ss on 2 . E at in g, d rin ki ng a nd p re ve nt in g he al th p ro bl em s iS u p p o rt In te rv e n ti o n M an u al 123 What do you think Ella should do? Please select all the responses that you feel are appropriate. „ Recognize that she needs to lock household chemicals, such as dishwashing soap, in a cabinet. „ Leave some inedible household materials in the places Oliver is able to reach, because she thinks Oliver should be taught that those cannot be eaten. MODULE 4 Le ss on 2 . E at in g, d rin ki ng a nd p re ve nt in g he al th p ro bl em s 2. Check your understanding Inedible materials. Inedible materials Oliver has been living with dementia for 10 years and is cared for by his wife, Ella. Ella starts to observe her husband closely during the day. Recently, Ella notices that the soaps she put in the kitchen and bathroom have disappeared. She also notices that her husband is eating the flowers that she puts on the dining table. She sees Oliver go to the kitchen and mistakenly pick up a soy sauce bottle and even a bottle of dishwashing detergent to drink. iS u p p o rt In te rv e n ti o n M an u al 124 What do you think Wei should do? Please select all the responses that you feel are appropriate. „ Learn how to make healthy, soft foods and thickened drinks for Lu. „ Not pay attention to how Lu is sitting when he helps her eat. A healthy soft diet can be made by hand without using an electric blender. Thickened fluids can be made by adding corn flour to water or other fluids while heating and stirring it, until it thickens. Note: commercial stir-in thickeners are available in the supermarket in many countries. MODULE 4 Le ss on 2 . E at in g, d rin ki ng a nd p re ve nt in g he al th p ro bl em s 3. Check your understanding Helping a person to eat safely. Tip Helping a person to eat safely Lu has been living with dementia for 10 years and is bedridden. Her husband, Wei, helps her to eat safely. Recently, he found Lu has difficulty swallowing soft foods that he makes for her. He also notices that she coughs when she drinks something. She seems to have a high temperature and is admitted to the hospital. Lu is diagnosed with aspiration pneumonia. After a month of treatment in the hospital, Lu has recovered and is discharged home. The doctor orders a healthy, soft diet and thickened drinks for Lu to consume at home to prevent future aspiration pneumonia. iS u p p o rt In te rv e n ti o n M an u al 125 You finished this lesson, well done! MODULE 4 Le ss on 2 . E at in g, d rin ki ng a nd p re ve nt in g he al th p ro bl em s Let’s review what you have learned z You can modify eating patterns for the person you care for to improve nutrition. z You can help the person living with dementia to eat and drink safely by keeping inedible materials and household chemicals in a safe place. z You can help prevent aspiration pneumonia by modifying the foods and drinks that they eat and positioning the person you care for in an upright position when helping them eat. iS u p p o rt In te rv e n ti o n M an u al 126 iS u p p o rt In te rv e n ti o n M an u al What would you advise Ling to do to improve Chiu’s eating? 9 Be flexible to have meals when her mother is awake. This is a good response. People in late stages of dementia need rest, so flexibility in planning meals will be very helpful when they are sleeping during normal mealtimes. 9 Keep a record of what and how often her mother eats in a diary. This is a good response. Recording what people with dementia eat is important. This way, carers will better understand when and what kind of food is needed for sufficient food intake. 9 Ensure Chiu has access to foods that she enjoys eating. This is a good response. What foods did she enjoy eating before her diagnosis of dementia? What foods does she seem to enjoy now? 1. Check your understanding How to improve eating and prevent weight loss. ANSWERS - PROVIDING EVERYDAY CARE Lesson 2. Eating, drinking and preventing health problems MODULE 4 AN SW ER S - P RO VI DI NG E VE RY DA Y CA RE • Le ss on 2 iS u p p o rt In te rv e n ti o n M an u al 127 iS u p p o rt In te rv e n ti o n M an u al What do you think Ella should do? 9 Recognize that she needs to lock household chemicals, such as dishwashing soap, in a cabinet. This is a good response. Keeping these dangerous things away will help protect the person living with dementia. 8 ✗Leave some inedible household materials in the places Oliver is able to reach because she thinks that Oliver should be taught that those cannot be eaten. This is not a good response. People in late stages of dementia can have a changed judgement of what they can or cannot eat. Keeping these dangerous things away from them is very important. How can Wei help Lu? 9 Learn how to make healthy, soft food and thickened drinks for Lu. This is a good response. Providing healthy, soft food and thickened drinks will make it easier for people in the late stage of dementia to continue to eat and drink on their own and maintain a healthy weight. 8 ✗Not pay attention to how Lu is sitting when they are helping her eat. This is not a good response. They should sit Lu in an upright position which will help her eat and drink better and prevent aspiration pneumonia. 2. Check your understanding Inedible materials. 3. Check your understanding Helping a person to eat safely. MODULE 4 AN SW ER S - E AT IN G, D RI NK IN G AN D PR EV EN TI NG H EA LT H PR OB LE M S • L es so n 2 iS u p p o rt In te rv e n ti o n M an u al 128 1. Possible solutions for problems such as urinating on the floor or losing bladder control Urinating on the floor Dementia can affect a person’s ability to find their way to the bathroom and identify the toilet and/or toilet seat. You should not blame the person living with dementia for this behaviour, nor punish them as this type of response will cause them and yourself stress. Modifying your house may help them use the bathroom. Why is this lesson important? Poor toileting and incontinence may lead to infections and other health problems, low self-esteem and withdrawal from social activities for a person living with dementia. How will this lesson help me? This lesson will help you think about the health concerns, and assist the person you care for with using the toilet and continence. What will I learn? 1. Possible solutions for problems such as urinating on the floor or losing bladder control. 2. Using incontinence aids and equipment. MODULE 4 Le ss on 3 . T oi let in g an d co nt in en ce ca re Lesson 3. Toileting and continence care iS u p p o rt In te rv e n ti o n M an u al 129 Zhen is taking care of her husband, Fu, since he developed vascular dementia several years ago. Fu is able to go to the toilet himself without assistance, but recently, Zhen finds Fu urinating on the floor outside the toilet. Let’s look at an example Below are some tips in case the person you care for experiences difficulties using the toilet. z Put an image of a toilet on the toilet door to help them find it. z Provide directions to the toilet if they are unable to find it. z Provide adequate nightlights in the hallway between the bedroom and the toilet. z Use contrasting colours for the toilet seat. z Change the person’s trousers to some that are easier to remove. z Provide step-by-step instructions to the person if they forget how to use the toilet. What do you think is the right response for Zhen? Please select the correct answer. „ Make some simple changes to the environment and clothing, such as putting an image of a toilet on the bathroom door, using a contrasting colour for the toilet seat or changing Fu’s trousers to a pair of pants that does not need a belt. „ Tell her husband, Fu, that he is making trouble and punish him by not taking him for his daily walk in their neighbourhood. 1. Check your understanding Prevent urinating on the floor. Tip MODULE 4 Le ss on 3 . T oi let in g an d co nt in en ce ca re iS u p p o rt In te rv e n ti o n M an u al 130 Contributing factors Recommended solutions A long distance to go to the toilet in the house Public toilet that is at a distance from the house Not being able to find the toilet Not enough colour contrast of the toilet seat Not enough lighting in the hallway Not enough lighting in the toilet z Direct the person you care for to the toilet z Provide a bedside commode at night z Use nightlights in the bedroom and the house z Provide a commode for them to use in the house z Put a picture of a toilet on the toilet door z Replace the toilet seat with a different colour to increase the contrast z Provide adequate lighting in the hallway z Provide adequate lighting in the toilet What other factors may contribute to urinating on the floor or losing bladder control? Le ss on 3 . T oi let in g an d co nt in en ce ca re iS u p p o rt In te rv e n ti o n M an u al 131 Contributing factors Recommended solutions Narrow toilet doors that do not allow the walker or wheelchair to pass Visual impairment Unable to undo trousers Forgetting what to do in the toilet z Modify the door opening to allow a walker or wheelchair to pass z Direct the person you care for to the toilet during the day z Provide a bedside commode at night z Change trousers to ones that are easily undone and removed z Assist the person you care for to pull on and do up trousers z Remind the person you care for of the activities they need to do z Provide step-by-step instructions for them to use the toilet Le ss on 3 . T oi let in g an d co nt in en ce ca re iS u p p o rt In te rv e n ti o n M an u al 132 What do you think is the right response for Joshua? Please select the correct answer. „ Since this is an embarrassing situation for Joshua, he should stop taking his mother shopping. „ Joshua should try to make sure that his mother uses the toilet before leaving to go shopping. MODULE 4 Le ss on 3 . T oi let in g an d co nt in en ce ca re 2. Check your understanding Dealing with losing bladder control. Urinating in public places Dementia affects the person’s ability to explain their needs, for example needing to go to the bathroom. Additionally, dementia can affect a person’s judgement of what is normal or not in public. You could help prevent these accidents (incontinence) by maintaining a regular, daily schedule to assist the person you care for to go to the toilet. Identifying how often they used the toilet before they had dementia might be helpful. You can also identify whether the person you care for needs to go to the bathroom by the way they behave, e.g. if they become agitated, stressed, anxious or restless. Let’s look at an example Joshua is taking care of his mother Esther, who received a diagnosis of dementia 5 years ago. Joshua usually takes his mother shopping in the neighbourhood as she enjoys meeting people. Recently, Joshua notices that his mother has lost bladder control during the day. iS u p p o rt In te rv e n ti o n M an u al 133 06:00-09:00 09:00-12:00 12:00-15:00 15:00-18:00 18:00-21:00 21:00-00:00 0:00-03:00 03:00-06:00 Time Number of trips to the toilet Number of times lost control of bladder or bowel What possible causes did you observe? Toilet use diary Date: To improve bladder or bowel control, it may help to fill out a toilet diary. Le ss on 3 . T oi let in g an d co nt in en ce ca re iS u p p o rt In te rv e n ti o n M an u al 134 There are numerous disposable and/or washable incontinence aids, pads and equipment. When selecting products, you should consider their cost, effectiveness, comfort and convenience. For bedridden males, using urinals to collect urine may help. Some of these urinals are designed to prevent the backward leaking of urine. In the late stages of dementia, the person living with dementia may not be able to control their bladder and bowel movements. Before using any incontinence aids and equipment, you should ask a health professional to help identify the cause(s) of incontinence, as these may be treatable and therefore reversible. Tip MODULE 4 Le ss on 3 . T oi let in g an d co nt in en ce ca re 2. Using incontinence aids and equipment iS u p p o rt In te rv e n ti o n M an u al 135 Let’s look at an example Gloria is in a late stage of Alzheimer’s disease and is living with her son’s family. Her daughter-in-law, Marina, is taking care of her. Since Gloria cannot control her bladder or bowel movement, the doctor suggests that Marina try incontinence pads for Gloria. In the beginning, Marina encounters a number of problems: z Gloria constantly takes the pad off and throws it on the floor. z Gloria still has wet pants even when using incontinence pads. z Gloria has skin problems in her genital area. MODULE 4 Le ss on 3 . T oi let in g an d co nt in en ce ca re 3. Check your understanding Use of personal hygiene products. What do you think is the right response for Gloria? Please select the correct answer. „ Marina should force Gloria to wear the pad. „ Marina should remind her mother-in-law to use the bathroom at scheduled times if she is not doing so herself. iS u p p o rt In te rv e n ti o n M an u al 136 Tip Constantly taking the pad off and throwing it on the floor Still having wet pants even while using the incontinence pads Having sore or irritated skin in the genital area Having fever, being in pain, strong smelling urine z Feeling uncomfortable with the pad z The pad size is wrong z The pad is wet and needs to be changed z Check whether the pad size is correct z Change the wet pad on time z Consult the doctor regarding the person’s behaviour z Use the right size and type of pad z Maintain scheduled trips to the toilet to minimize the use of pads z Select suitable pad size and type z Change the soiled pad on time and maintain hygiene around genital area z Apply protective creams or lotions that maintain healthy skin z See the doctor z Maintain an intake of 6-8 glasses of water or juice per day except if the person is under fluid or dietary restriction z Maintain good genital care z The pad size is incorrect z The schedule for using the toilet has not been maintained z Incontinence pads can cause skin breakdown z Unsuitable pad size and delaying changes of soiled pads in a timely manner can cause skin infection z Urinary tract infections are triggered by a number of factors, including incontinence and poor genital care Below are some tips for incontinence care. Problems Possible causes Recommended solutions Le ss on 3 . T oi let in g an d co nt in en ce ca re iS u p p o rt In te rv e n ti o n M an u al 137 Let’s review what you have learned z Do not blame the person after any accidents, such as urinating on the floor. z Modify the environment to reduce the chance of bladder and bowel accidents (for example, put a picture of a toilet on the bathroom door). z Take the person living with dementia to the toilet regularly to reduce accidents. z The frequency of toilet visits will need to be established based on the toilet pattern that the person living with dementia had before the onset of dementia. z If these changes do not help, incontinence aids and equipment may help. z Be aware that the use of incontinence aids can irritate the skin if used incorrectly. z Maintain good genital care to reduce the risk of a urinary tract infection. z If the person living with dementia is not under fluid restriction, encourage them to drink 6-8 glasses of water or juice per day to help prevent urinary tract infections. MODULE 4 Le ss on 3 . T oi let in g an d co nt in en ce ca re You finished this lesson, well done! For more tips on how to stay in control of your feelings please refer back to Lesson 3.Thinking differently in Module 3. Tip iS u p p o rt In te rv e n ti o n M an u al 138 iS u p p o rt In te rv e n ti o n M an u al 9 Make some simple changes to the environment and clothing, such as putting an image of a toilet on the bathroom door, using a contrasting colour for the toilet seat or changing Fu’s trousers to a pair of pants that doesn’t need a belt. This is the best answer. People with dementia may have difficulties finding and using the toilet, so these changes could help Fu. What do you think is the right response for Zhen? 8 Tell her husband that he is making trouble and punish him by not taking him for his daily walk in their neighbourhood. This is not a good answer. You should never threaten people with dementia in this way. Fu will feel ashamed and embarrassed and this response could cause him to become upset. 1. Check your understanding Prevent urinating on the floor. ANSWERS - PROVIDING EVERYDAY CARE Lesson 3. Toileting and continence care MODULE 4 AN SW ER S - P RO VI DI NG E VE RY DA Y CA RE • Le ss on 3 iS u p p o rt In te rv e n ti o n M an u al 139 iS u p p o rt In te rv e n ti o n M an u al 8 ✗Since this is an embarrassing situation for Joshua, he should stop taking his mother shopping. This is not the best response because his mother will miss out on a very important pleasant activity. What do you think is the right response for Joshua? 9 Joshua should try to make sure that his mother uses the toilet before leaving to go shopping This is a good response. It is a good way to help prevent Esther from losing bladder control. 8 Marina should force Gloria to have the pad on. This is not the right answer! It’s very important to check why a person living with dementia may feel uncomfortable with the pad. Is the size wrong? Is the pad wet and does it need to be changed? What do you think is the right response for Marina? 9 Marina should remind her mother-in-law to use the toilet at scheduled times if she is not doing so herself. This is the best answer. Scheduled toilet visits may help minimise incontinence and the need for pads. 2. Check your understanding Dealing with losing bladder control. 3. Check your understanding Use of personal hygiene products. AN SW ER S - P RO VI DI NG E VE RY DA Y CA RE • Le ss on 3 iS u p p o rt In te rv e n ti o n M an u al 140 1. Modifying the environment to make personal care easier There are different reasons for not being able to perform personal care. One reason is that people with dementia may not find the things that they need for personal care. For example, when you cannot find your toothbrush and toothpaste due to memory loss, it will be difficult to brush your teeth. However, you can modify the environment to make it easier for them to find things that are needed for personal care. Why is this lesson important? Dementia affects people’s ability to maintain personal care, for example brushing teeth, showering/bathing and grooming. Therefore, assistance with maintaining good personal care is very important. Poor personal care may lead to infections and other health problems, low self-esteem and withdrawal from social activities for people with dementia. How will this lesson help me? This lesson will help you think about the health concerns of the person you care for and assist them with personal care. What will I learn? 1. Modifying the environment to make personal care easier. 2. Tips for daily dressing, oral care and assisting in bathing. MODULE 4 Le ss on 4 . P er so na l c ar e Lesson 4. Personal care iS u p p o rt In te rv e n ti o n M an u al 141 What would you think is the right response for Mohammed? Please select the correct answer. „ Put personal care items in the order of use and label them with large print words and different colours for Mariam to read. „ Ask their daughter-in-law to take Mariam from the table to the bathing room and assist her with washing and changing clothes. Let’s look at an example Mariam has Alzheimer’s disease, but she is able to care for herself without assistance from family members. Recently, her husband, Mohammed, notices that she sits at the table for breakfast in a nightgown without having washed her face, brushed her hair, or doing her make-up as she usually does. There may be several reasons why Mariam may not undertake personal care before breakfast anymore. One of them is that she may be depressed. For more information on depression please see Lesson 4. Depression, anxiety or apathy in Module 5. Below are some tips that may help people with dementia find items or places, and to do personal care activities independently. z To find the bathroom or toilet: put a picture or words on the bathroom door or direct the person to the bathroom. z To find personal care materials: make items easy to see in the bathroom, label items with their name, use pictures or words on the bathroom wall to point out items, use contrasting colours. z To help turn the tap on and off: use colour indicators to label the direction for turning the tap on and off, instruct the person to turn the tap on and turn off, assist if needed. MODULE 4 Le ss on 4 . P er so na l c ar e 1. Check your understanding Promoting personal hygiene. Tip iS u p p o rt In te rv e n ti o n M an u al 142 2. Tips for daily dressing, oral care and assisting in bathing Difficulties choosing the right clothes or dressing appropriately Dementia can affect the person’s ability to choose clothes and dress appropriately. You can assist the person you care for to choose clothes and to dress in a way that makes the most use of their remaining skills. You should not take over these tasks when the person living with dementia can still perform them. What would you think is the right response for Jane? Please select the correct answer. „ Tell Ted that he needs to be less messy, choose clothes for Ted and dress him. „ Remind Ted to lay out his clothes in the evening and encourage him to wear pants that do not need a belt and shoes that do not need laces. Let’s look at an example Ted has Alzheimer’s disease and is cared for by his wife Jane. Ted used to lay out his clothes for the next day in the evening. Recently, Jane found that Ted forgets to do this and is inclined to wear the same clothes every day. Jane also observes that Ted leaves some buttons of his shirt undone, his belt unbuckled and forgets to lace up his shoes. MODULE 4 Le ss on 4 . P er so na l c ar e 2. Check your understanding Getting dressed. iS u p p o rt In te rv e n ti o n M an u al 143 Difficulties brushing one’s teeth Dementia not only affects memory but also organization, coordination and concentration, which are required to perform mouth care. Poor mouth care is associated with poor appetite, bad breath, infections of the teeth or gums and other health problems. The goal of assisting with mouth care is to help the person make the most use of their remaining skills. What would you think is the right response for Lingling? Please select the correct answer. „ Put Guoliang’s dentures into his mouth without asking. „ Instruct her husband how to brush his teeth step-by-step and praise him when he is doing well. Let’s look at an example Guoliang has Alzheimer’s disease but is able to brush his teeth without assistance. Recently, Guoliang’s wife, Lingling notices that her husband makes a big mess in the bathroom with water and toothpaste on the countertop and the floor. She also observes that her husband is unable to brush his teeth in the order that he usually does and can’t insert his artificial dentures himself. MODULE 4 Le ss on 4 . P er so na l c ar e 3. Check your understanding Promoting mouth care. iS u p p o rt In te rv e n ti o n M an u al 144 Please select any mouth care steps that the person you care for needs help with from the list below. „ Putting toothpaste on the toothbrush „ Brushing teeth in an order that will clean teeth and gums „ Rinsing and cleaning mouth „ Using floss or toothpick to clean between teeth daily „ Applying balm to moisturize lips when needed „ Checking for signs of mouth infections or toothache when needed „ Removing, washing, cleaning, and storing artificial dentures if needed 1. Activity MODULE 4 Le ss on 4 . P er so na l c ar e iS u p p o rt In te rv e n ti o n M an u al 145 Difficulties performing personal care and bathing Dementia may also affect the person’s ability to wash their hair and take a shower or a bath. A person living with dementia may view assistance with personal care as a threat to his or her privacy, safety and security, and may refuse or resist any help. Let’s look at an example Feng has Alzheimer’s disease and is cared for by his wife Yuan. Due to her age, Yuan is not strong enough to help bathe Feng anymore, so the family decides that the three sons-in-law could take turns to help with Feng’s weekly bath. The oldest son-in-law is very kind to Feng and reassures him that he will make him comfortable during the bath. He takes Feng to the bathroom and starts to undress him. Feng suddenly pushes him away, shouts at him and tells him to go away. MODULE 4 Le ss on 4 . P er so na l c ar e 4. Check your understanding Resisting help with bathing. What would you think is the right response for Feng’s family? Please select the correct answer. „ Since the family notices that Feng thought his son-in- law was a stranger, Yuan decides to be with Feng while her son-in-law bathes him. „ They should say to Feng that he should be grateful for the help he receives and if he continues to behave this way, he will be sent to a long-term care facility. iS u p p o rt In te rv e n ti o n M an u al 146 People with dementia may show resistance during personal care, or even become aggressive like Feng in this example. To read more about how to prevent or deal with aggression, please refer to Lesson 3. Aggression in Module 5. Below are some tips for assisting with bathing. z Identify the times of day that the person you care for prefers to have a bath/shower. z Switch from a shower/bath to a sponge bath. (Note: bath tubs are particularly difficult as they may lead to falls and it may be hard for the carer to lift the person living with dementia out of the tub.) z If using the shower or bathtub, use a non-slip bath or shower mat to help prevent falls. z Adaptive seating or equipment, such as grab bars and shower chairs, may help. z For people with dementia who are afraid of water, try to reduce the water flow. Tip MODULE 4 Le ss on 4 . P er so na l c ar e When assisting with personal care, ask the person living with dementia for their preferences whenever possible and respect their choice. Reassure them that they are safe and comfortable. iS u p p o rt In te rv e n ti o n M an u al 147 Select any personal care activities that the person living with dementia needs help with. Coach them through the individual steps involved in each activity. „ Selecting daytime clothing „ Undressing before shower/bath „ Taking pyjamas off/on „ Shaving „ Washing and drying face „ Applying body lotion to moisturize skin „ Drying body after washing „ Combing hair „ Preparing for a shower/bath „ Putting on make-up „ Putting non-slip mats on the floor „ Washing hair/body during shower/bath „ Washing and drying hands „ Using towel to dry hair/body „ Washing and drying genital areas „ Dressing after shower/bath „ Washing and drying feet „ Checking for signs of skin problems „ Changing night clothing into daytime clothing „ Using electrical hairdryer „ Turning the tap on, adjusting the water temperature and preparing for bathing „ Cutting fingernails and toenails when needed MODULE 4 Le ss on 4 . P er so na l c ar e 2. Activity iS u p p o rt In te rv e n ti o n M an u al 148 Let’s review what you have learned z Engage the person living with dementia in personal and mouth care as long as possible, using remaining skills. z Modify the environment, for example by providing guidance, encouraging them to select different types of clothes or providing seating while performing personal care. z Engage the person you care for in daily decision making, for example what clothes they would like to wear. z Keep in mind that not have enough assistance with personal care may cause agitation or aggression. z Be compassionate and try to understand why they resist being assisted with personal care. You finished this lesson, well done! MODULE 4 Le ss on 4 . P er so na l c ar e iS u p p o rt In te rv e n ti o n M an u al 149 iS u p p o rt In te rv e n ti o n M an u al 9 Put personal care items in the order of use and label them with large print words and different colours for Mariam to read. This is a good response. People with dementia may lose the ability to find items that are not obvious. Creating an ‘easy to find’ environment for them is very important. What do you think is the right response for Mohammed? 8 Ask their daughter-in-law to take Mariam from the table to the bathing room and assist her with washing and changing clothes. This is not the right answer. Mohammed needs to first find out what the reason is for her not doing the personal care before breakfast anymore. Also, instead of assuming, Mohammed needs to ask his wife first if she wants help from their daughter-in- law. Not asking may upset her. ANSWERS - PROVIDING EVERYDAY CARE Lesson 4. Personal care MODULE 4 AN SW ER S - P RO VI DI NG E VE RY DA Y CA RE • Le ss on 4 1. Check your understanding Promoting personal hygiene. iS u p p o rt In te rv e n ti o n M an u al 150 iS u p p o rt In te rv e n ti o n M an u al What do you think is the right response for Jane? 8 Tell Ted that he needs to be less messy, choose clothes for Ted and dress him. This answer is not helpful. It is not Ted’s fault that he is finding this task challenging. With some extra help, Ted may still be able to dress himself. 9 Remind Ted to lay out his clothes in the evening and encourage him to wear pants that do not need a belt and shoes that do not need laces. You are right! It will enable Ted to dress himself, which may also help improve his sense of self-worth. 8 Put Guoliang’s dentures in his mouth without asking. This is not the right answer. Lingling is completely taking over care tasks and not even asking his permission. This response may upset Guoliang. 9 Instruct Guoliang how to brush his teeth in a step-by- step manner and praise him when he is doing well. This is the best answer. Guoliang maintains a level of independence in this way, which may also help to improve his sense of self-worth. MODULE 4 AN SW ER S - P RO VI DI NG E VE RY DA Y CA RE • Le ss on 4 2. Check your understanding Getting dressed. 3. Check your understanding Promoting mouth care. What do you think is the right response for Lingling? iS u p p o rt In te rv e n ti o n M an u al 151 iS u p p o rt In te rv e n ti o n M an u al 9 Since the family notices that Feng thinks that his son-in-law is a stranger, Yuan decides to be with Feng while her son-in-law bathes him. Good advice! A person living with dementia may no longer recognize people they used to know, so giving them plenty of transition time to get familiar with people is very important. MODULE 4 AN SW ER S - P RO VI DI NG E VE RY DA Y CA RE • Le ss on 4 4. Check your understanding Resisting help with bathing. 8 They should say to Feng that he should be grateful for the help that he receives and if he continues to behave in this way, he will be sent to a long-term care facility. This is bad advice. Never threaten people with dementia in this way. Saying things like this will not help the situation and will make Feng feel very distressed. What do you think is the right response for Feng’s family? iS u p p o rt In te rv e n ti o n M an u al 152 1. Establishing routines for the person with dementia during the day When someone is living with dementia, it is important to create an environment that supports them to do the things that they like to do. This is also true for you. It is important to try and maintain routines and activities that are familiar to the person living with dementia, and to adapt them as their abilities change. Why is this lesson important? It is important to maintain routines and activities that are familiar to a person living with dementia to help create an enjoyable day. How will this lesson help me? By learning how to adapt routines and activities as the abilities of the person living with dementia change. What will I learn? 1. Establishing routines for the person with dementia during the day. 2. Adapting routines to the changing abilities of the person you care for. Lesson 5. An enjoyable day MODULE 4 Le ss on 5 . A n en jo ya bl e d ay iS u p p o rt In te rv e n ti o n M an u al 153 What is a routine? A routine is something that a person does every day or almost every day. It is important to try and continue the routine of the person living with dementia for as long as possible. This is reassuring and can reduce stress at home. Be aware of the person’s usual routine. If there has not been a routine, for example in the evening, then it is helpful to develop one and follow it regularly. This might include drinking a cup of tea, listening to soothing music, or saying prayers. It is helpful to have routines for other times of the day as well, such as immediately after getting up from bed in the morning, when having the midday meal or planning what to do in the afternoon. The simpler and easier these routines are to follow, the more likely they will reassure the person living with dementia and reduce stress at home. Morning time: starting the day It’s helpful to have a set time for waking up and then several things to do in sequence to get the day started. Think of bathing, brushing one’s teeth, getting dressed and then sitting down for breakfast. As dementia progresses, the person you care for will need help with each of these activities but one way to lower stress is to keep the basic routines as similar as possible. During the day, it’s also important to try and make time for activities that the person living with dementia enjoys, such as visiting a friend or another family member, going for a walk, reading, playing games, or listening to the radio. These activities will depend on the person’s prior interests and current abilities. In the early stages of dementia, your family member or friend may be able to do things that they like to do with minimal guidance. However, as the disease progresses, activities will need to be changed or modified so that they can still enjoy them. It’s important to be flexible and creative in figuring out the routines and then adapting them as needed over time. MODULE 4 Le ss on 5 . A n en jo ya bl e d ay iS u p p o rt In te rv e n ti o n M an u al 154 What suggestions do you have for Penny? Please select the correct answer from the responses below. „ If Penny suggests keeping to the routine by drinking tea first, it is likely that Martha will go for a walk afterwards. „ Penny should ask Martha what activities she is used to and in what order she would like to do them. „ Penny should force Martha to go for a walk because it was advised by the doctor. It is important to keep routines (something the person living with dementia does every day or almost every day) for as long as possible. This may help to avoid confusion, agitation, restlessness and boredom. It also helps to honour the person’s dignity. Think for a moment about how you might feel if your routines were changed or planned by another person. MODULE 4 Le ss on 5 . A n en jo ya bl e d ay 1. Check your understanding Morning routines. Keep in Mind Let’s look at an example Martha has dementia and is used to drinking tea immediately after getting ready in the morning. Her daughter Penny really wants to encourage her mother to walk every day, as recommended by her doctor. Penny is not aware of her mother’s usual routine, so when she tries to get Martha to go for a walk right after breakfast, Martha refuses. iS u p p o rt In te rv e n ti o n M an u al 155 z It is important to develop routines for morning activities and maintain them as long as possible. z Make adjustments as needed when the abilities of the person living with dementia change. 2. Adapting routines to the changing abilities of the person you care for It is important to adapt routines as the abilities of the person living with dementia change. Here are some common routines to establish during the day for a person living with dementia. In the morning Wake up at the same time every day z Adaptation: help might be needed to wake up because the person with dementia may not be able to set the alarm correctly. Have breakfast at a fixed time. In the earlier stages of dementia, your family member or friend might be able to make their own breakfast. z Adaptation: the person with dementia may need someone to lay out ingredients. Later on, they may need more help with preparing and eating breakfast. Performing grooming activities, such as brushing teeth, bathing/ cleaning, getting dressed. In the early stages, the person you care for may be able to do all of these activities without help. z Adaptation: items such as the toothbrush, toothpaste, etc. can be laid out in the bathroom in plain view to prompt the activity. In the later stages of dementia, it may be necessary for someone to do these activities for, or with, the person living with dementia. For more tips, please refer back to Lesson 4. Personal care in this module. MODULE 4 Le ss on 5 . A n en jo ya bl e d ay Keep in Mind iS u p p o rt In te rv e n ti o n M an u al 156 MODULE 4 Le ss on 5 . A n en jo ya bl e d ay What suggestions do you have for Penny? Please select the correct answer from the responses below. „ Penny should put away the baking and cooking pans and tell her mother that it’s just not possible to do this anymore. „ Penny should go shopping with her mother and buy easy to prepare cakes and cookies, “out of the box”, with limited added work to enable Martha to continue to do some cooking and baking. „ As Martha’s abilities change, Penny could plan some time during the afternoon to bake and cook with her mother. 2. Check your understanding Maintaining prior activities and interests during the day. Let’s look at an example Martha loves baking and used to prepare special cakes and cookies for family gatherings. Now that she has dementia, she sometimes forgets the ingredients and the order in which to put them in. At first, Martha uses a cookbook to help her continue baking but she finds this increasingly difficult. The cakes and cookies do not taste very good and have to be thrown away. Penny wants to help her mother keep up this activity. During the day It is helpful to plan activities that the person you care for enjoys doing, based on their prior interests and current abilities. iS u p p o rt In te rv e n ti o n M an u al 157 What suggestions do you have for Penny? Please select the correct answer from the responses below. „ Penny could ask another family member to help Martha. „ Penny could ask other people outside the family to walk with Martha to the community centre, such as a neighbour. „ Penny could tell her mother to do a quiet activity in the afternoons such as watching television or listening to the radio. It is important to respect the daily routines of the person you care for and maintain them for as long as possible. When this is no longer possible, adapt the routine to the best of your ability so that the key activities that are important to the person with dementia are maintained for as long as possible. MODULE 4 Le ss on 5 . A n en jo ya bl e d ay 3. Check your understanding Maintaining activities and interests outside the house. Keep in Mind What is sundowning? Sometimes people with dementia become more agitated, aggressive or confused in the late afternoon or early evening. This is often referred to as ‘sundowning’. It can be particularly distressing for carers. The exact cause of sundowning is not yet clear but a loss of routine might be one of the reasons. Try to give the person something meaningful to do at this time of day. Let’s look at an example Martha likes to go to a community centre every day from 12:00 until 15:00. She has lunch there and meets friends to do activities together. At first Martha walks there by herself but as her memory loss becomes more severe, she cannot find her way to the centre anymore. Penny asks another family member to take Martha to the centre and bring her back home. This works well for a while but eventually the family member is unable to take Martha. Penny does not know what to do since she cannot be with Martha every afternoon. iS u p p o rt In te rv e n ti o n M an u al 158 At bedtime z For the morning, afternoon and bedtime, establish and maintain routines for as long as possible, but be prepared to adapt these as the abilities of the person living with dementia change over time. z Printing out a list of daily routines can help. Do one for each day and put it up in a prominent place. MODULE 4 Le ss on 5 . A n en jo ya bl e d ay What suggestions do you have for Penny? Please select the correct answer from the responses below. „ Penny could read to Martha for 15 minutes before she goes to sleep. „ Penny should take the books out of Martha’s room. „ Penny should get some books that have more pictures than words or audiotapes for Martha. 4. Check your understanding Adapting routines. Tip At night, Martha is used to reading quietly for about 30 minutes before she goes to sleep. As her dementia progresses, she finds that she is no longer able to read. Sometimes she is just staring at her book. She increasingly finds reading confusing. Penny wants to adapt this routine to fit Martha’s current abilities. iS u p p o rt In te rv e n ti o n M an u al 159 Do you know any of the routines of the person with dementia that you care for? Please write down any ideas that you have about routines for the person you care for and how they can be adapted. MODULE 4 Le ss on 5 . A n en jo ya bl e d ay 1. Activity iS u p p o rt In te rv e n ti o n M an u al 160 You finished this lesson, well done! MODULE 4 Le ss on 5 . A n en jo ya bl e d ay Let’s review what you have learned z Establishing routines is important for people living with dementia. z Try to keep routines similar to the ones your family member or friend had before developing dementia. z Be prepared to adapt routines as necessary as the abilities of the person living with dementia change over time. iS u p p o rt In te rv e n ti o n M an u al 161 iS u p p o rt In te rv e n ti o n M an u al 9 If Penny suggests keeping to the routine by drinking tea first, it is likely that Martha will go for a walk afterwards. Right! It will help Martha keep her routine. 9 ✓Penny should ask Martha what activities she is used to and in what order she would like to do them. Indeed! Penny can learn Martha’s routines. However, this may only work if Martha is in the early or middle stages of dementia. Later on, Martha might not be able to remember her routines. 8 Penny should force Martha to go for a walk because it was advised by the doctor. This response is not so good because it may make Martha feel agitated and upset. 1. Check your understanding Morning routines. ANSWERS - PROVIDING EVERYDAY CARE Lesson 5. An enjoyable day MODULE 4 AN SW ER S - P RO VI DI NG E VE RY DA Y CA RE • Le ss on 5 What suggestions do you have for Penny? iS u p p o rt In te rv e n ti o n M an u al 162 iS u p p o rt In te rv e n ti o n M an u al 8 ✗Penny should put away the baking and cooking pans and tell her mother that it’s just not possible to do this anymore. This is not very helpful. Penny has not tried to come up with an alternative to help her mother and it may make Martha feel upset. 9 Penny should go shopping with her mother and buy easy to prepare cakes and cookies, “out of the box”, with limited added work to enable Martha to continue to do some cooking and baking. This is a good suggestion. It respects Martha’s routine but adapts the activity to her current abilities. 9 As Martha’s abilities change, Penny could plan some time during the afternoon to bake and cook with her mother. This is an excellent plan for the future! It allows Martha to continue her routine with support as needed. MODULE 4 AN SW ER S - P RO VI DI NG E VE RY DA Y CA RE • Le ss on 5 2. Check your understanding Maintaining activities and interests during the day. What suggestions do you have for Penny? iS u p p o rt In te rv e n ti o n M an u al 163 iS u p p o rt In te rv e n ti o n M an u al 9 Penny could ask another family member to help Martha. This is a good idea. If others can come on a regular basis, this is the best solution for Martha as it maintains her routine and adapts to Martha’s changing abilities. 9 Penny could ask other people outside the family to walk with Martha to the community center such as a neighbour. This is a good response. Family is not always available and sometimes other people don’t know how they can help. This is a concrete way that Penny could ask for help. 8 Penny could tell her mother to do a quiet activity in the afternoons like watching television or listening to the radio. This is not likely to be a good solution at this time. It isolates Martha from other people and doesn’t allow her to engage in the activities that she enjoys. It might be a better solution in the later stages of dementia, when Martha’s abilities change. MODULE 4 AN SW ER S - P RO VI DI NG E VE RY DA Y CA RE • Le ss on 5 3. Check your understanding Maintaining activities and interests outside the house. What suggestions do you have for Penny? iS u p p o rt In te rv e n ti o n M an u al 164 iS u p p o rt In te rv e n ti o n M an u al 9 Penny could read to Martha for 15 minutes before she goes to sleep. This is a good idea. It helps Martha to continue enjoying reading but adapts the activity to her abilities. 8 Penny should take the books out of Martha’s room. This is not a good response because it does not recognise how important reading is to Martha. Penny should recognise that her mother and her can still share this routine; it just needs to be adapted. 9 Penny should get some books that have more pictures than words or audiotapes for Martha. This is a helpful adaption for people in the later stages of dementia who liked to read but find that they are not able to read books with a lot of words. 4. Check your understanding Adapting routines. MODULE 4 AN SW ER S - P RO VI DI NG E VE RY DA Y CA RE • Le ss on 5 What suggestions do you have for Penny? M od ul e 5 . D ea lin g wi th b eh av io ur ch an ge s DEALING WITH BEHAVIOUR CHANGES Lesson 1. Introduction to behaviour changes Lesson 2. Memory loss Lesson 3. Aggression Lesson 4. Depression, anxiety or apathy Lesson 5. Difficulty sleeping Lesson 6. Delusions and hallucinations Lesson 7. Repetitive behaviour Lesson 8. Walking and getting lost Lesson 9. Changes in judgement Lesson 10. Putting it all together 5 MODULE iS u p p o rt In te rv e n ti o n M an u al 166 MODULE 5 Why is this lesson important? Dementia changes the way that people behave, think or act. This can be distressing or upsetting not only for the person with dementia, but also for their families and carers, like you. How will this lesson help me? This lesson helps to improve your skills to prevent and cope with behaviour changes. What will I learn? 1. Behaviour changes that may be particularly stressful. 2. Understanding the cycle of behaviour change. 3. Different approaches to respond to behaviour changes. Lesson 1. Introduction to behaviour changes 1. Behaviour changes that may be particularly stressful Dementia changes the way people behave, think or act. This not only affects the person living with dementia, but can also be distressing and upsetting for carers, like you. ”Any behaviour that gets you or the person you care for upset is stressful.” In this introduction you will learn: z How you can identify behaviours that are potentially upsetting, stressful or difficult for you and the person you care for. z How you might handle behaviour changes. z How you might change circumstances to reduce or prevent behaviour changes. Le ss on 1 . I nt ro du ct io n to b eh av io ur ch an ge s iS u p p o rt In te rv e n ti o n M an u al 167 MODULE 5 Does the person you care for ever experience any of the following behaviour changes? Please select any that apply. Forgetting or losing things, not being able to recall recent events or remember dates and days of the week. Talking or acting in a threatening way, or doing things that make you feel frightened. Feeling sad, worried, frightened, frustrated or angry, being unusually emotional, crying, agitated or restless, withdrawn, unhappy, apathetic or reacting slowly. Restless at night, waking you or other family members up. Misinterpreting the world, having fixed false beliefs, things a person sees or hears that are not there, or becomes suspicious of those around them. „ Memory loss „ Aggression „ Depression, anxiety or apathy „ Difficulty sleeping „ Delusions and hallucinations: seeing or hearing things that are not there Behaviour changes Example 1. Activity Le ss on 1 . I nt ro du ct io n to b eh av io ur ch an ge s iS u p p o rt In te rv e n ti o n M an u al 168 MODULE 5 Repeating a question or an action over and over. Continuously walking around, leaving the house and getting lost. Saying the wrong thing at the wrong time, acting inappropriately in a situation, not understanding own limitations. None of these symptoms are present at this point in time. „ Repetitive behaviour: doing things over and over „ Wandering: walking around a lot „ Changes in judgement „ Not at this time Behaviour changes Example 1. Activity Many things can cause behaviour changes that are upsetting to you or the person you care for. This can have a bad effect on your relationship with the person you care for. It can even make you feel sad, angry, confused, or anxious. In some instances, you might even feel as though you can’t cope with the situation. In this lesson you will learn what you can do to reduce or prevent these situations. Remember Le ss on 1 . I nt ro du ct io n to b eh av io ur ch an ge s iS u p p o rt In te rv e n ti o n M an u al 169 MODULE 5 Understanding any behaviour change and what happens before and after the behaviour is very important. Sometimes you can reduce or even prevent certain behaviours. If you pay attention and understand what happens before or “triggers” the behaviour, this can help you to reduce or prevent the behaviour. Let’s look at the following example Kayla has dementia like the person you care for. Her husband Howard is taking care of her, like you are caring for your family member or friend. Howard often asks Kayla if she can remember who came to visit last week or what she had for dinner yesterday. Kayla cannot remember these things and gets agitated. As a result, Howard feels frustrated. 2.Understanding the cycle of behaviour change “Howard is asking Kayla questions” “Howard feels frustrated” What happens before? Carer’s response to the behaviour Behaviour “Kayla can’t answer the questions and gets agitated” Le ss on 1 . I nt ro du ct io n to b eh av io ur ch an ge s The diagram below shows what’s happening. iS u p p o rt In te rv e n ti o n M an u al 170 MODULE 5 What happens before the behaviour? What do you think happens before Kayla gets agitated that you might be able to change? Below are some examples. 1. Howard asks questions that Kayla cannot answer. 2. The tone of voice that Howard uses to ask these questions makes Kayla feel nervous. Now you try the next one. Please fill in your ideas on what comes before Kayla gets agitated in the box below. When you are done, check the answer section at the end of this lesson for more ideas. 1. Check your understanding Identifying what happens before the behaviour. Le ss on 1 . I nt ro du ct io n to b eh av io ur ch an ge s iS u p p o rt In te rv e n ti o n M an u al 171 MODULE 5 2. Check your understanding Different ways of responding to behaviour change. Now let’s look at Howard’s response So, what are we trying to do? We are trying to separate what comes before the behaviour and what the carer’s response is after the behaviour. How does Howard respond in this example? Howard gets frustrated because his wife Kayla forgot who came to visit and what she had for dinner. Howard can choose to change his response. Here are some responses, some are good, others are not. Please check what you think could be good responses. Howard could: „ Show that he is frustrated. „ Take a deep breath. „ Show his irritation by saying: “I already answered that, please stop bothering me”. „ Remind himself that his wife has dementia and cannot help that she forgets things. She is not forgetting on purpose. „ Next time, remember that asking her such questions will only cause frustration, not only for him, but also for his wife. „ Work with Kayla to record significant family and social events in a family diary. Le ss on 1 . I nt ro du ct io n to b eh av io ur ch an ge s iS u p p o rt In te rv e n ti o n M an u al 172 MODULE 5 3. Different approaches work at different times. What if Howard’s approach doesn’t work the first time? Different approaches work at different times, so Howard should not give up! Howard could try several approaches until he finds one that works. Here are some examples of what Howard could do: z He can ask other people’s advice, for example his health care provider. z He can also ask someone at the Alzheimer’s Association (a community based organisation that provides support for people with dementia and their carers) in his country: https://www.alz.co.uk/associations. z He can search for information on the internet. Le ss on 1 . I nt ro du ct io n to b eh av io ur ch an ge s iS u p p o rt In te rv e n ti o n M an u al 173 MODULE 5 Now think about your own situation It is important to apply what you have just learned to your own situation with the person you care for. Use the spaces below, like a diary. 2. Activity What could you do to change what happened before the behaviour in order to reduce or prevent it? What is the behaviour that was the most distressing or upsetting to you in the past month? How could you respond in that situation? Le ss on 1 . I nt ro du ct io n to b eh av io ur ch an ge s iS u p p o rt In te rv e n ti o n M an u al 174 MODULE 5 Let’s review what you have learned z People with dementia may experience behaviour changes that are distressing or upsetting to them or those around them. z It is helpful to identify what happens before the stressful behaviour to understand what might cause it or make it worse. z It is also helpful to identify how you usually respond, what you feel or what you do. z Take a deep breath and think about the best ways to respond that will be the least distressing to you and the person you care for. z Try different responses and approaches, as the first one does not always work. z Seek professional help if you cannot manage a situation. You finished this lesson, well done! Le ss on 1 . I nt ro du ct io n to b eh av io ur ch an ge s iS u p p o rt In te rv e n ti o n M an u al MODULE 5 175 iS u p p o rt In te rv e n ti o n M an u al z Kayla has dementia. Remembering who came to visit last week is difficult for her. z Kayla has dementia and cannot remember what she had for dinner. 1. Check your understanding Identifying what happens before the behaviour. ANSWERS- DEALING WITH BEHAVIOUR CHANGES Lesson 1. Introduction to behaviour changes AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 1 iS u p p o rt In te rv e n ti o n M an u al MODULE 5 176 iS u p p o rt In te rv e n ti o n M an u al AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 1 8 Show that he is frustrated. This is not the best response. Showing that he is frustrated is an inappropriate way to deal with the stressful behaviour, it may even make the person living with dementia irritable. 9 ✓Take a deep breath. This is a good response. It shows that Howard is trying to control his frustration. 8 Show his irritation by saying: “I already answered that, please stop bothering me”. This reaction is not so good, because Howard’s irritability may upset Kayla even more. 9 ✓Remind himself that his wife has dementia and cannot help that she forgets things. She is not forgetting on purpose. This is a good response, because Howard recognises that Kayla is living with dementia. 9 Next time, remember that asking her such questions will only cause frustration, not only for him, but also for his wife. This is a good response, because it may prevent this frustrating situation. 9 Work with Kayla to record significant family and social events in a family diary. This is a good response, because they can revisit the events from time to time if Kayla is missing family members and friends. 2. Check your understanding Different ways of responding to behaviour change. What are some of the ways that Howard could respond? iS u p p o rt In te rv e n ti o n M an u al MODULE 5 177 Why is this lesson important? Memory loss can be frustrating for the person living with dementia and the carer. How will this lesson help me? In this lesson you will practice several ways to respond to memory loss, and find out what may help you deal with the person’s increasing forgetfulness. What will I learn? 1. What is memory loss? 2. How to respond to memory loss? Lesson 2. Memory loss 1. What is memory loss? People with dementia will increasingly lose their memory over time. In the beginning, they may forget recent events, where they put their keys, their wallet or a particular piece of paper. They find it harder to remember phone numbers, important dates and appointments. However, past memories, such as childhood memories, are often preserved for a longer period of time. Le ss on 2 . M em or y l os s iS u p p o rt In te rv e n ti o n M an u al MODULE 5 178 1. What is memory loss? People with dementia will increasingly lose their memory over time. In the beginning, they may forget recent events, where they put their keys, their wallet or a particular piece of paper. They find it harder to remember phone numbers, important dates and appointments. However, past memories, like childhood memories, are often preserved for a longer period of time. Do s t e person you care for som times forget things? If so, what kinds of things do they forget? Please write them down. 1. Activity Le ss on 2 . M em or y l os s iS u p p o rt In te rv e n ti o n M an u al MODULE 5 179 How would you advise Maya to deal with her mother’s memory loss? Please check all the responses that you feel are appropriate from the list below. „ Ask a neighbour to go with Anne once a week to the market to buy groceries. „ Create a memory aid together with Anne, e.g. a list of groceries that Anne needs to buy, and put the list in a place where it can be seen, so that it is easy to access. „ Go out and buy groceries immediately. „ Ask: “Mom, what’s wrong with you, there is no food in the house”. „ Sit down with Anne and make a list of groceries. Go shopping together. 1. Check your understanding Forgetting to buy groceries. 2. How to respond to memory loss? In this lesson you can practice several ways to respond to memory loss, and find out what may help you deal with it. Let’s have a look at an example Anne is living with dementia. She has a daughter named Maya. They live very close to each other. When Maya goes to visit Anne’s house, she notices that the fridge or cupboard is empty. Anne often forgets what she usually buys from the market. The person you care for might also forget other things. The same goes for Anne. Le ss on 2 . M em or y l os s iS u p p o rt In te rv e n ti o n M an u al MODULE 5 180 What do you think Maya’s response should be? Please check all the responses that you feel are appropriate from the list below. „ Tell her mother what to do over the phone. „ Ask her mother what she usually does on that given day. For example, Monday is wash day; Thursday is going to the market day. „ Move in with her mother. „ Go straight over and take charge of the situation, by ordering her mother around. „ Plan to visit Anne every weekend and write out to-do lists for every day of the week. „ Hire someone to stay with her mother all the time. „ Ask her mother while on the phone to get a pencil and paper. Talk through the plan for the day together. 2. Check your understanding Forgetting daily activities. Let’s look at another example Maya and Anne are talking on the phone. Maya notices that Anne often forgets what she normally does during the day. Maya is impatient with Anne, and tells her mother, “this is getting worse”. Le ss on 2 . M em or y l os s iS u p p o rt In te rv e n ti o n M an u al MODULE 5 181 How do you think Maya should respond to this situation? Please check all the responses that you feel are appropriate from the list below. „ Maya puts notes near the clock when her mother needs to take a pill. „ Maya says, “Mom, how could you forget your medications?”, and “you know you really need them to stay healthy!” „ Maya goes through the medicine cabinet, sits down and cries about her mother’s memory loss. „ Maya goes over the medications with her mom. She purchases a pill box, and puts the pills in the box at the right day and time and calls her mom every day to instruct her to take her medications. 3. Check your understanding Forgetting medication. Sometimes memory loss can be more serious, like in the next example. Let’s look at an example Maya comes to visit and discovers that Anne is having trouble remembering which medications to take and at what time.Le ss on 2 . M em or y l os s iS u p p o rt In te rv e n ti o n M an u al MODULE 5 182 Let’s look at your own situation It is important to apply what you have learned to your own situation. How could you respond to help the person you care for deal with their memory loss? Write down some ideas. 2. Activity Le ss on 2 . M em or y l os s iS u p p o rt In te rv e n ti o n M an u al MODULE 5 183 z Memory loss is very common for people with dementia. z Memory loss can be stressful to deal with. z In case of memory loss, try a memory aid like a note, pill- box, reminder/alarm, etc. z If possible, involve the person you care for to find the best way to support them in case of memory problems. z It is important to remember that the person living with dementia is not to blame, because he/she can’t help that they forget. z When one approach doesn’t work, try another one. z Realize there may be good and bad days. z Remind yourself that memory loss is part of the disease. z Take a deep breath and think about the best ways to respond that will be the least distressing to you and the person you care for in the case of memory loss. You finished this lesson, well done! Let’s review what you have learned Le ss on 2 . M em or y l os s iS u p p o rt In te rv e n ti o n M an u al MODULE 5 184 iS u p p o rt In te rv e n ti o n M an u al Relaxation exercise - Neck movements ANSWERS - DEALING WITH BEHAVIOUR CHANGES Lesson 2. Memory loss 9 Ask a neighbour to go with Anne once a week to the market to buy groceries. This might be helpful. Anne will have groceries and a nice visit with the neighbour. 9 ✓Create a memory aid together with Anne, e.g. a list of groceries that Anne needs to buy, and put it in a prominent place, so that the list is easy to access. This is a good response. It addresses Anne’s memory loss and may become a weekly shared pleasant activity. 8 Go out and buy groceries immediately. This answer is not so good because it is a panic reaction and a one-time solution. It does not solve the problem at hand. 8 Ask: “Mom, what’s wrong with you, there is no food in the house”. This answer is not so good because Anne cannot help that she forgets to buy food and may feel embarrassed that she has done something wrong. It does not improve the situation. 9 Sit down with Anne and make a list of groceries. Go shopping together. This answer may be a good one because Maya is addressing her mother’s needs. However, she might first want to try another approach. For example, with a list of groceries that her mother may still be able to go shopping without help. 1. Check your understanding Forgetting to buy groceries. AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 2 What would you advise Maya? iS u p p o rt In te rv e n ti o n M an u al MODULE 5 185 iS u p p o rt In te rv e n ti o n M an u al Relaxation exercise - Neck movements 8 Tell her mother what to do over the phone. This response is not so good because her mother may not understand or be able to follow a phone conversation. 9 Ask her mother what she usually does on that given day. For example, Monday is wash day; Thursday is going to the market day. This response may be a good one because Maya can use this information to remind her mother. 8 Move in with her mother. This is not the right response. There are several other less drastic approaches that Maya has not yet tried. 8 Go straight over and take charge of the situation, by ordering her mother around. This response is not so good because it is a one-time solution and does not solve the problem at hand. 9 Plan to visit Anne every weekend and write out to-do lists for every day of the week. This is a good response because it may help her mother to remember. 8 Hire someone to stay with mother all the time. This is not the right response. There are several less drastic approaches that Maya has not tried yet. 9 Ask her mother while on the phone to get a pencil and paper. Talk through the plan for the day together. This is a good response because it may help her mother to remember. Maya could call her mother every morning at a certain time, and ask her to get a pencil and paper and to plan her day together. 2. Check your understanding Forgetting daily activities. What do you think Maya’s response should be? AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 2 iS u p p o rt In te rv e n ti o n M an u al MODULE 5 186 iS u p p o rt In te rv e n ti o n M an u al Relaxation exercise - Neck movements 9 Maya puts notes near the clock when her mother needs to take a pill. This may be good to do because a memory aid could help Anne remember to take her pills. 8 Maya says, “Mom, how could you forget your medications?”, and “You know you really need them to stay healthy!” This response is not helpful because Anne cannot help that she forgets to take her medications. Memory loss is part of her disease. 8 Maya goes through the medicine cabinet, sits down and cries about her mother’s memory loss. This is not the way to deal with her mother’s memory loss. Getting upset will not solve her mother’s problem of forgetting to take medications. 9 Maya goes over the medications with her mom. She purchases a pill box, and puts the pills in the box at the right day and time and calls her mom every day to instruct her to take her medications. This is a good response because this memory aid might help Anne to take medications at the right day and time. Some pill reminder boxes come with alarms that are pre-set to remind the person to independently take their medications. 3. Check your understanding Forgetting medication. How should Maya respond? AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 2 iS u p p o rt In te rv e n ti o n M an u al MODULE 5 187 Why is this lesson important? From time to time, people with dementia may become angry, aggressive or violent. This is often one of the most difficult things to cope with for carers. How will this lesson help me? This lesson helps to understand possible causes of aggression and improve your skills to prevent or deal with aggression. What will I learn? 1. Why does aggression happen? 2. How to respond to aggressive behaviour? 3. How to deal with ongoing aggression? Lesson 3. Aggression 1. Why does aggression happen? From time to time, people with dementia may become angry, aggressive or violent. Aggression can happen for a variety of reasons. It can be due to unmet needs, illness such as a urinary tract infection, medication combinations or side effects, or something that is happening around the person with dementia. In addition, people with dementia may have difficulty understanding others, judging social situations, controlling their feelings or expressing themselves like they did before. They may also have personality or mental health changes that contribute to aggressive behaviours. At times, aggression is displayed towards people known to the person living with dementia. At other times it can be with strangers. Aggression is often one of the most difficult things to cope with for carers. Le ss on 3 . A gg re ss io n iS u p p o rt In te rv e n ti o n M an u al MODULE 5 188 Let’s look at your situation Check your answer, yes or no. Does the person you care for ever talk to you or other people in an aggressive way? „ Yes „ No Does the person you care for ever act aggressively towards you or other people? „ Yes „ No 1. Activity WARNING! If the person is suddenly behaving aggressively, there may be an underlying cause (for example a urinary infection) that should be investigated by a doctor. Le ss on 3 . A gg re ss io n iS u p p o rt In te rv e n ti o n M an u al MODULE 5 189 Do you remember the cycle of behaviour change? Just like we mentioned in Lesson 1. Introduction to behaviour changes, it is important to break down the cycle of stressful responses into three parts in order to help you deal with them. What happens before? Carer’s response to the behaviour Behaviour Here they are Le ss on 3 . A gg re ss io n iS u p p o rt In te rv e n ti o n M an u al MODULE 5 190 Neil wants to assist his father-in-law, Amit, in taking a bath because Amit needs to see a doctor. Neil says: “it is time for your bath”. Amit refuses. Neil has little time and tugs on his father-in-law’s arm. He says: “you need to bathe because you’re going to see the doctor.” Amit pulls his arm back and resists. He is much stronger than Neil. Neil tugs it again and says angrily: “you must take a bath because you are going to the doctor and need to be clean”. Amit gets very angry, shouts and even tries to shove Neil, who becomes upset. Amit angrily refuses to take a bath Can you break down the cycle of behaviour change in this example into its three parts? Please fill in the boxes below. What comes before the behaviour? What is the stressful behaviour? What is Neil’s response? 1. Check your understanding Understanding aggressive behaviour. Let’s see how the cycle works with a different example. Le ss on 3 . A gg re ss io n iS u p p o rt In te rv e n ti o n M an u al MODULE 5 191 „ Force his father-in-law to start bathing anyway. „ Maintain the dignity and privacy of his father-in-law. He could keep him in a robe or towel until he actually takes a bath. „ Play soothing music that Amit likes. „ Walk away and come back later. „ Explain logically why he should bathe. „ Put himself in Amit’s shoes and try to understand why Amit might not want to take a bath. 2. Check your understanding Responding to aggressive behaviour. 2. How to respond to aggressive behaviour? There are many ways to respond to aggressive behaviour. Some are good, others are not. In the exercise below you can learn more. How could Neil react differently? Please indicate what you think are good responses. Neil could: Le ss on 3 . A gg re ss io n iS u p p o rt In te rv e n ti o n M an u al MODULE 5 192 „ Make sure that there is enough time so that it is not so stressful. Rather than trying to bathe Amit right before the doctor’s appointment, when things are rushed, Neil might try to assist with bathing the day before. „ Before the next bath time, identify the best time of day for Amit to take a bath and find out whether he prefers a bath or a shower. „ When bathing Amit, keep a towel over his shoulders to help him maintain dignity and to keep him warm. „ Ask for someone else to help with Amit’s bath time. „ Help Amit with a bed bath by using warm, wet towels with soap without taking Amit to the bath. „ Say in an irritated voice: “I have already answered that, please stop bothering me.” “You must take a bath!” 2. Check your understanding (continued) Responding to aggressive behaviour. Le ss on 3 . A gg re ss io n iS u p p o rt In te rv e n ti o n M an u al MODULE 5 193 What could Neil do if his approach does not work the first time? Check all that apply. „ Neil could try several approaches until he finds one that works. „ Neil could get suggestions from others. 3. Check your understanding Ongoing aggressive behaviour. 3. How to deal with ongoing aggression? Sometimes your first approach may not work. Don't get discouraged, different responses may work at different times. Take a deep breath and think about the most positive ways to respond that will be the least distressing to you and the person you care for. Remind yourself that aggression can be a part of the dementia, or a reaction to the disease. Reminder Different responses may work at different times. Le ss on 3 . A gg re ss io n iS u p p o rt In te rv e n ti o n M an u al MODULE 5 194 Let’s look at your own situation It is important to apply what you have just learned to your own situation. Has the person that you care for ever been aggressive towards you? If so, describe the last time that this happened in the spaces below. 2. Activity What happened before the person you care for became aggressive? What could you do to change your response to this behaviour? What could change in the environment to make it more calming? Le ss on 3 . A gg re ss io n iS u p p o rt In te rv e n ti o n M an u al MODULE 5 195 z Aggression like shouting, shoving or pushing can happen to carers of people with dementia. z Aggression can be very upsetting for the person living with dementia as well as the carer. z Try to change the environment to make it more calming. z Try to maintain the dignity of the person living with dementia; do not force them to engage in activities that they do not wish to do. z If one approach does not work, try another one. z Realize that there may be worse, but also better moments. z Remind yourself that aggression can be a part of the dementia, or a reaction to the disease. z If the person is suddenly behaving aggressively, there may be an underlying cause (for example a urinary infection) that should be investigated by a doctor. z Take a deep breath and think about the most positive ways to respond that will be the least distressing to you and the person you care for. z If the person you care for continues to show aggression, there are many resources available on the internet. For example, look at the website of the Alzheimer Association in your country (www.alz.co.uk/associations). You finished this lesson, well done! Let’s review what you have learned Le ss on 3 . A gg re ss io n iS u p p o rt In te rv e n ti o n M an u al MODULE 5 196 iS u p p o rt In te rv e n ti o n M an u al Relaxation exercise - Neck movements ANSWERS - DEALING WITH BEHAVIOUR CHANGES Lesson 3. Aggression AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 3 Amit angrily refuses to take a bath Can you break down the cycle of behaviour change in this example into its three parts? Please fill in the boxes below. What comes before the behaviour? Neil tugs Amit’s arm and says angrily: “you must take a bath because you are going to the doctor and need to be clean”. Amit gets very upset and shouts and even tries to shove Neil. Neil becomes upset. What is the stressful behaviour? What is Neil’s response? 1. Check your understanding Understanding aggressive behaviour. iS u p p o rt In te rv e n ti o n M an u al MODULE 5 197 iS u p p o rt In te rv e n ti o n M an u al Relaxation exercise - Neck movements AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 3 8 Force his father-in-law to start bathing anyway. This is not helpful, because it does not change the situation and may only make it worse. 9 Maintain the dignity and privacy of his father-in-law. He could keep him in a robe or towel until he actually takes a bath. Correct. Maintaining dignity and privacy is always a good idea when caring for someone with dementia. By doing this Neil makes sure that the person living with dementia is comfortable. 9 Play soothing music that Amit likes. Yes. Though it may take extra time to arrange the music, this option may help sooth both Neil and Amit. This may create relaxation and less negative responses from both of them. 9 Walk away and come back later. This is a good response. It gives Neil time to calm down, take a deep breath and come up with a new strategy. It also gives Amit time to forget about the negative encounter and he may be in a better mood if approached differently later. 8 Explain logically why he should bathe. This answer is not so good. It does not take into account that Amit may not be able to understand because of his dementia. 2. Check your understanding Responding to aggressive behaviour. How could Neil react differently? Neil could: iS u p p o rt In te rv e n ti o n M an u al MODULE 5 198 iS u p p o rt In te rv e n ti o n M an u al Relaxation exercise - Neck movements AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 3 9 Make sure that there is enough time so that it is not so stressful. Rather than trying to bathe Amit right before the doctor’s appointment, when things are rushed, Neil might try to assist with bathing the day before. Though taking more time may not always be feasible, this option is good. It may reduce tension for Neil and Amit. 9 Before the next bath time, identify the best time of day for Amit to take a bath and find out whether he prefers a bath or shower. This answer is good. Keeping people with dementia to their regular routines shows attention to their preferences. 9 When bathing Amit, keep a towel over his shoulders to help him maintain dignity and to help keep him warm. This answer is good. Amit could be embarrassed to be naked in front of his son-in-law or the temperature of the water or the room could be too cold. It’s important to look for ways to make the situation more pleasant. 9 ✓Neil could ask for someone else to help with Amit’s bath time. This answer is good. Sometimes the person living with dementia is more comfortable with one family member helping them bathe than another. Sometimes even a stranger might find it easier as the person living with dementia might be less embarrassed than with a family member. 2. Check your understanding (continued) Responding to aggressive behaviour. iS u p p o rt In te rv e n ti o n M an u al MODULE 5 199 iS u p p o rt In te rv e n ti o n M an u al Relaxation exercise - Neck movements AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 3 9 Neil could help Amit with a bed bath by using warm, wet towels with soap without taking Amit to the bath. This answer is good. If the person living with dementia is afraid of the bath, or running water, this option will help relieve their distress and can sometimes be used instead of baths. There are also products such as dry shampoo and cleaning products used for young children that might help. 8 Say in an irritated voice: “I have already answered that, please stop bothering me.” “You must take a bath!” This is not helpful, because it does not change the situation. 2. Check your understanding (continued) Responding to aggressive behaviour. iS u p p o rt In te rv e n ti o n M an u al MODULE 5 200 iS u p p o rt In te rv e n ti o n M an u al Relaxation exercise - Neck movements AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 3 What could Neil do if his approach does not work the first time? 9 Neil could try several approaches until he finds one that works. 9 Neil could get suggestions from others. There may be other approaches that you could try. This can be information from people that you know or that is available on the Internet. See for example: http://www.alz.co.uk/ 3. Check your understanding Ongoing aggressive behaviour. iS u p p o rt In te rv e n ti o n M an u al MODULE 5 201 Why is this lesson important? Dementia may affect a person’s mood and interest in daily activities, people and events. How will this lesson help me? This lesson helps you to understand the possible causes of depression and anxiety, while improving your skills to prevent or reduce mood problems. What will I learn? 1. What are depression, anxiety and apathy? 2. How to respond when a person living with dementia is feeling depressed or anxious? 3. How to respond when a person living with dementia loses interest in daily activities? Lesson 4. Depression, anxiety and apathy 1. What are depression, anxiety and apathy? Depression, anxiety and apathy are common among people with dementia. Dementia may affect a person’s mood and interest in daily activities, people and events. This may be due to changes in the brain, but also to the emotional reaction of what is happening to them. People with dementia may feel sad, worried, frightened, frustrated or angry, may cry and be unusually emotional, agitated or restless. They may also be withdrawn, unhappy and react slowly. These are all behaviours of depression and apathy. Anxiety can lead to behaviours similar to depression. People with dementia can be worried about being left alone, who is handling their money, or where lost items have gone to and become anxious. Le ss on 4 . D ep re ss io n, an xie ty an d ap at hy iS u p p o rt In te rv e n ti o n M an u al MODULE 5 202 2. How to respond when a person living with dementia is feeling depressed or anxious? Let’s look at an example Juan has dementia and lives with his sister, Isabel. On several occasions Isabel has found Juan sitting in his favourite chair looking very sad, hunched over, and sometimes crying. Isabel tries to cheer him up. Unfortunately, everything that she tries does not seem to work. How should Isabel handle this situation? Below are some things that Isabel may do or say. Please select all responses that you think might work. „ Walk over to Juan and say in a calm, reassuring tone, “I have some ideas about how you can feel better, let’s talk. „ Say: “Juan, what’s the matter with you? I’m tired of seeing you like this. Just get up and do something.” „ Say: “men don’t cry and get sad, we used to have so much fun together.” „ Go over and touch Juan on the arm or shoulder. “I know that you feel bad, I do too. What we’re going through is really hard.” „ Sit with Juan and suggest that they do a pleasant activity together. „ Sigh and walk away, thinking that there is nothing that she can do. 1. Check your understanding Responding to a person with dementia who is feeling depressed. Le ss on 4 . D ep re ss io n, an xie ty an d ap at hy iS u p p o rt In te rv e n ti o n M an u al MODULE 5 203 Here is another example Emma has dementia and lives with her family. Benjamin is her grandson. Because Benjamin’s parents work and he is in school, he is the main carer in the afternoons. Benjamin is watching a TV show while his grandmother is sewing. The TV show has loud music and vulgar language. Suddenly, his grandmother jumps up and paces up and down the room, wringing her hands. She is muttering to herself “I need to go home”, “I need to go home”. How do you think that Benjamin should respond to this situation? Below are some things that Benjamin may do or say. Please select all the correct responses. „ Think “Grandmother cannot help the way that she behaves.” „ Say “Grandmother! Sit down, you’re making it impossible for me to watch my show.” „ Give his grandmother a smile and reassure her that she is safe. „ Ask his grandmother to help him with something. „ Turn up the volume to drown out the muttering and turn away from her. „ Look for his headphones and encourage his grandmother to go back to her sewing so that she is busy. 2. Check your understanding Responding to a person with dementia who is feeling anxious. Le ss on 4 . D ep re ss io n, an xie ty an d ap at hy iS u p p o rt In te rv e n ti o n M an u al MODULE 5 204 „ Sofia walks over to George and says “I’m sick and tired of this laziness, get up and let’s go". „ Sofia goes over to George and strokes his hair. She says that she loves him and that she would like to do something together. George turns to her and smiles weakly. „ Sofia says: “you never do anything I want anymore, it is impossible to keep on living with you. I don’t know what I’m going to do.” „ Sofia says: “let’s go for a walk together, I know how much you would enjoy getting out of the house for a little while.” „ Sofia closes the door and doesn’t try to engage with George anymore. „ Sofia thinks back to what George used to really like doing and thinks how she could help, for example by reading the newspaper to him, cooking his favourite dish or visiting a shop to let him straighten the shelves with the shopkeeper’s permission. 3. Check your understanding Responding to a person with dementia who loses interest in daily activities. 3. How to respond when a person living with dementia loses interest in daily activities? Let’s look at an example George has dementia and lives with his wife Sofia. George used to be a shopkeeper and was very active in the community. Recently, George has been sitting in a chair near a large window and staring blankly outside, this type of behaviour can also be known as apathy where the person with dementia has trouble becoming interested in doing something. Sofia has become very concerned, because this is not like him. He seems removed and distant from her. One day, she walks in and says “George, shall we go out for a walk?” He does not respond. How do you think Sofia should react? Please check all the responses that you think are appropriate. Le ss on 4 . D ep re ss io n, an xie ty an d ap at hy iS u p p o rt In te rv e n ti o n M an u al MODULE 5 205 Let’s look at your own situation It is important to apply what you have learned to your own situation. The spaces below are for you, like a diary. Does the person living with dementia ever show changes in mood or interest, or any signs of depression or anxiety? If so, what do these changes look like? What could you do to prevent this? How could you respond in a different way? 1. Activity Le ss on 4 . D ep re ss io n, an xie ty an d ap at hy iS u p p o rt In te rv e n ti o n M an u al MODULE 5 206 z Signs of depression and anxiety are common in people with dementia. z Changes in mood can be very upsetting to the person living with dementia and the carer. z People with mood problems need extra love and support. z It is important to identify ways to stop or reduce mood changes, by comforting and getting the person interested in things that they like to do. z If one approach doesn’t work, try another one. z In case of mood changes, remind yourself that they may be part of the disease or a reaction to the disease. z Take a deep breath and think about the best ways to respond that will be the least distressing to you and the person you care for in case they have mood problems or experience a loss of interest. Let’s review what you have learned It is important to recognize when things get serious. If the person you care for has serious and constant mood changes or you think that they are in danger of harming themselves, it is important to seek medical advice right away. Remember You finished this lesson, well done! Le ss on 4 . D ep re ss io n, an xie ty an d ap at hy iS u p p o rt In te rv e n ti o n M an u al MODULE 5 207 iS u p p o rt In te rv e n ti o n M an u al ANSWERS - DEALING WITH BEHAVIOUR CHANGES Lesson 4. Depression, anxiety and apathy AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 4 9 Walk over to Juan and say in a calm, reassuring tone, “I have some ideas for how you can feel better, let’s talk. This is a good response because Juan needs more support due to the changes in his mood. 8 Say: “Juan, what’s the matter with you? I’m tired of seeing you like this. Just get up and do something.” This response is not helpful because Juan cannot help that he is feeling sad. 8 Say: “men don’t cry and get sad, we used to have so much fun together.” This response is not good because it might embarrass Juan and may make him feel even more sad. Below are some things that Isabel may do or say. Please select all responses that you think might work. 9 Go over and touch Juan on the arm or shoulder. “I know that you feel bad, I do too. What we’re going through is really hard.” This is a good response because people who are feeling sad need extra love, support and understanding. 9 Sit with Juan and suggest that they do a pleasant activity together. This is a good response because it may distract Juan and make him feel better. 8 Sigh and walk away, thinking thinking that there is nothing that she can do. This is not helpful because Isabel is further isolating Juan. 1. Check your understanding Responding to a person with dementia who is feeling depressed. iS u p p o rt In te rv e n ti o n M an u al MODULE 5 208 iS u p p o rt In te rv e n ti o n M an u al AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 4 9 Think “Grandmother cannot help the way that she behaves.” This is a good response because it recognizes that Emma’s reaction might be due to changes in her brain. 8 Say “Grandmother! Sit down, you’re making it impossible for me to watch my show.” This response is not good because a direct order like this may make Emma feel even more anxious. 9 Give his grandmother a smile and reassure her that she is safe. This is a good response because people who are feeling anxious need extra love and support. Below are some things that Benjamin may do or say. Please select all the correct responses. 9 Ask his grandmother to help him with something. This might help because it might distract Emma and change her reaction. 8 Turn up the volume to drown out the muttering and turn away from her. This is not a good response. It will only increase his grandmother’s anxiety. 9 Look for his headphones and encourage his grandmother to go back to her sewing so that she is busy. This is a good response. Benjamin can still watch TV with headphones so it is not too loud for Emma, and Emma might be able to engage in her sewing again. 2. Check your understanding Responding to a person with dementia who is feeling anxious. iS u p p o rt In te rv e n ti o n M an u al MODULE 5 209 iS u p p o rt In te rv e n ti o n M an u al AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 4 8 Sofia walks over to George and says “I’m sick and tired of this laziness, get up and let’s go”. This response is not good because a direct order may make George more withdrawn. It doesn’t show any understanding of his dementia. 9 Sofia goes over to George and strokes his hair. She says that she loves him and that she would like to do something together. George turns to her and smiles weakly. This is a good response because it recognizes that the problem is related to his dementia. She is not taking it personally and is expressing extra love and support. 9 Sofia says: “you never do anything I want anymore, it is impossible to keep on living with you. I don’t know what I’m going to do.” This is not a good response because it shows that she is giving up on George. He may become even more withdrawn from her. How do you think Sofia should react? Please check all the responses that you think are appropriate. 9 Sofia says: “let’s go for a walk together, I know how much you would enjoy getting out of the house for a little while.” This is a good response because it is reassuring and may comfort George. 8 Sofia closes the door and doesn’t try to engage with George anymore. This is not the right response because it may worsen George's loss of interest. 9 Sofia thinks back to what George used to really like doing and thinks how she could help, for example by reading the newspaper to him, cooking his favourite dish or visiting a shop to let him straighten the shelves with the shopkeeper’s permission. This is a good response because it shows Sofia cares about George and wants to help him engage in an activity that he would enjoy. 3. Check your understanding Responding to a person with dementia who loses interest in daily activities. iS u p p o rt In te rv e n ti o n M an u al MODULE 5 210 Why is this lesson important? People with dementia may have difficulty sleeping which can impact the carer’s sleep as well. How will this lesson help me? This lesson will provide examples and practice to promote good sleep. What will I learn? 1. How to deal with sleeping problems in a person with dementia? 2. How to deal with a person with dementia who wakes up in the middle of the night? Lesson 5. Difficulty sleeping 1. How to deal with sleeping problems in a person with dementia? Difficulty sleeping can be a problem for people with dementia and their families. People with dementia can have difficulty falling asleep, may wake up in the middle of the night, or wake up too early in the morning. Carers may have their sleep disrupted as a result, which can make it harder to provide care. In this lesson, you will practice how to promote good sleep for the person living with dementia. Le ss on 5 . D iffi cu lty s le ep in g iS u p p o rt In te rv e n ti o n M an u al MODULE 5 211 What is the main sleeping problems of the person that you care for? Please select all that apply. „ Difficulty falling asleep „ Waking up in the middle of the night „ Combination of the above „ Other (please specify): „ No problems at this point 1. Activity Le ss on 5 . D iffi cu lty s le ep in g iS u p p o rt In te rv e n ti o n M an u al MODULE 5 212 Can you break down the cycle of behaviour change in this example into its three parts? What comes before the behaviour? What is the stressful behaviour? What does this mean for Grace? 1. Check your understanding Understanding sleeping difficulties. Difficulty falling asleep Rosie is an older woman with dementia. She lives with her family. She sleeps near her granddaughter, Grace. Usually, the family has dinner around 6pm. The family is used to doing some activities together afterwards. Rosie does not always like these activities so the family often wants her to go to bed as early as 8pm. Granddaughter Grace notices that Rosie has trouble falling asleep. Rosie continues to open and shut her dresser drawers noisily during the evening. When Grace goes to bed, the noise Rosie is making keeps Grace awake. Le ss on 5 . D iffi cu lty s le ep in g iS u p p o rt In te rv e n ti o n M an u al MODULE 5 213 Here are some examples of what Grace could do. Please select all that you think may be appropriate to help Rosie fall asleep: „ Go for a walk with Rosie and add more physical activity during the day. „ Give her a pill to sleep. „ Try and ensure that Rosie does not drink coffee or too much fluid a few hours before going to bed. „ Make lunch the bigger meal of the day. „ Limit daytime naps to 15 to 30 minutes. „ Play soothing music before bedtime to help Rosie sleep. „ Create a bedtime routine, like lowering the lights, washing face and teeth, and changing into pajamas. „ Keep in mind that some people may require less sleep. Generally, 6 to 8 hours sleep from 20:00 means night waking between 2:00 to 4:00 in the morning. 2. Check your understanding Responding to sleeping difficulties. So far, we have covered some basic steps to help the person with dementia fall asleep. What if the problems are a bit more complex? Le ss on 5 . D iffi cu lty s le ep in g iS u p p o rt In te rv e n ti o n M an u al MODULE 5 214 What can Geeta do to keep Vani from wandering at 3:00 in the morning? Please select all responses that you feel are appropriate. „ Try to understand what will help Vani sleep. Some people prefer to keep the room dark with no television or as little noise as possible while others prefer a night light, soft music or a television playing. „ Give Vani a favourite object to relax (e.g. blanket or stuffed animal). „ Schedule an appointment with the doctor to find out if there is a medical reason for her trouble sleeping (e.g. urinary tract infection, pain, medication causing hallucinations). „ Develop an activity schedule to keep Vani awake and busy during the day. „ Encourage physical exercise during the day (e.g. walking, stretching). „ Tell Vani that you won’t take care of her anymore if you are continuously woken up at night. „ Ask if she has to go to the bathroom or is hungry or thirsty. If she says “yes”, then just assist her to meet these needs. „ Physically take hold of her and put her back in bed. „ Ask for help from a family member, friend or a paid professional. 3. Check your understanding Dealing with waking in the middle of the night (1). 2. How to deal with a person with dementia who wakes up in the middle of the night? Let’s look at another example It is 3:00 in the morning, Vani wakes up and starts walking around the house. Her daughter-in-law, Geeta, is sleeping. Vani paces throughout the house and then goes to Geeta and wakes her up. Vani asks: “Where are we? I want to go home”. Geeta is upset, because she has a long day at work tomorrow. Geeta says: “mother, you need to go back to bed, it is 3:00 in the morning.” Vani says: “I am not sleepy.” Geeta yells: “I can’t take this anymore.” Le ss on 5 . D iffi cu lty s le ep in g iS u p p o rt In te rv e n ti o n M an u al MODULE 5 215 Which of the responses below would you choose if the person you care for experiences sleeping problems? Please select all responses that you feel are appropriate. „ Remind yourself to stay calm and focus on getting the person living with dementia to sleep. This way, you will use your energy to solve the sleeping problem, rather than reacting emotionally. „ Gently remind the person that it is dark outside and it is time to sleep. If needed try to relax the person, for example by playing soothing music. „ Read aloud to the person you care for. Choose something that you know has a calming effect, perhaps a poem or story. Sing a song or chant together. Another option is to pray or meditate for 15 minutes together. „ Comfort the person living with dementia. Give them a stuffed animal and hug or hold them until they fall asleep. 4. Check your understanding Dealing with waking in the middle of the night (2). In the previous exercise, you identified several ways of dealing with waking in the middle of the night. Now let's look at your own situation and some additional responses. Sleeping problems may be related to depression. If the person you care for has difficulty sleeping, you might want to read Lesson 4 Depression, anxiety or apathy. Please also seek advice from a doctor. Tip Le ss on 5 . D iffi cu lty s le ep in g iS u p p o rt In te rv e n ti o n M an u al MODULE 5 216 Let’s look at your own situation In an earlier Activity on page 211, you identified the main sleeping problem of the person you care for. It is important to apply what you have learned to your own situation. The space below is for you, like a diary. What could you do to help tackle the sleeping problems? What could you do to improve your reaction to sleeping problems? 2. Activity Le ss on 5 . D iffi cu lty s le ep in g iS u p p o rt In te rv e n ti o n M an u al MODULE 5 217 z Difficulty sleeping is common in people with dementia. z Sleeping problems can be very stressful to deal with. z If the person you care for is having difficulty sleeping, try to make them more comfortable. z Try to identify circumstances that may increase difficulty sleeping and change or address them. z When one approach doesn’t work, try another one. z Realize that there will be good and bad days. z Remind yourself that difficulty sleeping is part of the disease. z Take a deep breath and think about the best ways to respond that will be the least distressing for you and the person you care for in case of sleeping problems. z Ask for help. It is hard to provide good care on limited sleep. Let’s review what you have learned You finished this lesson, well done! Le ss on 5 . D iffi cu lty s le ep in g iS u p p o rt In te rv e n ti o n M an u al MODULE 5 218 iS u p p o rt In te rv e n ti o n M an u al Can you break down the cycle of behaviour change in this example into its three parts? What comes before the behaviour? Rosie is sent to bed as early as 20:00, so that the family can do activities together that Rosie does not like. Rosie has trouble falling asleep and continues to open and shut her dresser drawers noisily during the evening. This keeps Grace awake. What is the stressful behaviour? What does this mean for Grace? 1. Check your understanding Understanding sleeping difficulties. ANSWERS - DEALING WITH BEHAVIOUR CHANGES Lesson 5. Difficulty sleeping AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 5 iS u p p o rt In te rv e n ti o n M an u al MODULE 5 219 iS u p p o rt In te rv e n ti o n M an u al 9 ✓Go for a walk with Rosie and add more physical activity during the day. This is a good idea! Physical exercise during the day may help sleep at night. 8 Give her a pill to sleep. This is not a good idea. It can make someone with dementia even more confused or agitated and sleeping pills may become addictive. 9 Try to ensure that Rosie does not drink coffee or too much fluid a few hours before going to bed. This is a good response. Coffee, tea, or too much liquid can keep people awake, and cause frequent urination. 9 Make lunch the bigger meal of the day. This is helpful. A light dinner makes it easier to sleep. Rosie has trouble falling asleep 9 Limit daytime naps to 15 to 30 minutes. This might be a good idea. It addresses the need for sleep during the day, but it does not prevent Rosie from falling asleep later on. 9 Play soothing music before bedtime to help Rosie sleep. Good idea. Find relaxing activities before bed such as music, or reading to Rosie. Too much activity before bed can cause a person to be stimulated and stay awake. 9 Create a bedtime routine, like lowering the lights, washing face and teeth, and changing into pajamas. This is a good response because a routine will relax the person living with dementia. 9 Keep in mind that some people may require less sleep. Generally, 6 to 8 hours sleep from 20:00 means night waking between 2:00 to 4:00 in the morning. This is a good response. Select a normal sleeping time as much as possible. 2. Check your understanding Responding to sleeping difficulties. AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 5 iS u p p o rt In te rv e n ti o n M an u al MODULE 5 220 iS u p p o rt In te rv e n ti o n M an u al 9 Try to understand what will help Vani sleep. Some people prefer to keep the room dark with no television or as little noise as possible while others prefer a night light, soft music or a television playing. This answer is a good one. Each person is different and you may need to try several possible solutions before finding one that works. 9 Give Vani a favourite object to relax (e.g. blanket or stuffed animal). This response is a good one. It may help Vani feel relaxed and secure. What can Geeta do to keep Vani from wandering at 3:00 in the morning? 9 Schedule an appointment with the doctor to find out if there is a medical reason for her trouble sleeping (e.g. urinary tract infection, pain, medication causing hallucinations). While it is not necessary to seek medical attention every time that a person living with dementia can’t sleep, seek advice if it worries or upsets you or the person living with dementia. 9 Develop an activity schedule to keep Vani awake and busy during the day. This is a good idea. It may improve sleep at night. 3. Check your understanding Dealing with waking in the middle of the night (1). AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 5 iS u p p o rt In te rv e n ti o n M an u al MODULE 5 221 iS u p p o rt In te rv e n ti o n M an u al 9 Encourage physical exercise during the day (e.g. walking, stretching). This may be helpful to improve sleep at night. 8 Tell Vani that you won’t take care of her anymore if you are continuously woken up at night. This is not a good response. Keep in mind that dementia is a disease and someone with dementia will be dependent on the care that others provide. 9 Ask if Vani has to go to the bathroom or is hungry or thirsty. If she says “yes”, then just assist her to meet these needs. This is helpful. Such a break might help the person go back to sleep. 8 Physically take hold of Vani and put her back in bed. Never do this. Although it may be very difficult to deal with sleeping problems, respect the dignity of someone with dementia. Moreover, they may become agitated or angry. It definitely will not solve the sleeping problems. 9 Ask for help from a family member, friend or a paid professional. This might be helpful. Eventually, the lack of sleep can affect any family’s ability to provide care. Someone else can assist by giving the family member a night or a weekend off. AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 5 3. Check your understanding (continued) Dealing with waking in the middle of the night (1). iS u p p o rt In te rv e n ti o n M an u al MODULE 5 222 iS u p p o rt In te rv e n ti o n M an u al 9 Remind yourself to stay calm and focus on getting the person living with dementia to sleep. This way, you will use your energy to solve the sleeping problem, rather than reacting emotionally. Correct! 9 Gently remind the person that it is dark outside and it is time to sleep. If needed try to relax the person, for example by playing soothing music. Great idea! Which of the responses below would you choose if the person you care for experiences sleeping problems? 9 Read aloud to the person you care for. Choose something that you know has a calming effect, perhaps a poem or story. Sing a song or chant together. Another option is to pray or meditate for 15 minutes together. Good response! 9 Comfort the person living with dementia. Give them a stuffed animal and hug or hold them until they fall asleep. Great idea! 4. Check your understanding Dealing with waking in the middle of the night (2). AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 5 iS u p p o rt In te rv e n ti o n M an u al MODULE 5 223 Why is this lesson important? Unreal thoughts and seeing things that aren’t there (delusions and hallucinations) can be very upsetting to the person living with dementia and the carer. How will this lesson help me? This lesson will help you identify ways to stop or reduce delusions and hallucinations and how you might change the way that you respond to them. What will I learn? 1. Why do people with dementia have unreal thoughts and see or hear things that aren’t there? 2. How to stop or reduce delusions and hallucinations? Lesson 6. Delusions and hallucinations 1. Why do people with dementia have unreal thoughts and see or hear things that aren’t there? People with dementia may not understand the world around them because of changes in their brain. These misunderstandings are called delusions (unreal thoughts) and hallucinations (seeing or hearing things that are not there). A delusion is a fixed false belief. For example, the person may hold the false belief of being under threat or harm from the carer. To the person living with dementia the error in thinking is very real, causes fear and may result in distressing self- protective behaviours. If the person is experiencing a hallucination, they might see or hear things that are not there, for example, people talking in the room. People with dementia with these ideas need a lot of understanding and support from the person taking care of them. Le ss on 6 . D elu sio ns an d ha llu cin at io ns iS u p p o rt In te rv e n ti o n M an u al MODULE 5 224 Has the person you care for ever had any unreal thoughts or seen or heard things that were not there? You can describe them in the space below, like in a diary. 1. Activity Unreal thoughts or seeing/hearing things that are not there are common problems for some people with dementia. In this lesson, you will learn how to deal with them. Remember Le ss on 6 . D elu sio ns an d ha llu cin at io ns iS u p p o rt In te rv e n ti o n M an u al MODULE 5 225 What would you recommend Martin do? Please check all correct answers. „ Soothe her in a calm voice. „ Lead her away from the woman in the park. „ Directly tell the truth, harshly, to set the record straight. „ Argue with Betty that the young woman is not her sister. „ Say that the young woman in the park is someone who looks like her, but it is not her. „ Involve the woman in the park in any way. „ Try to ‘convince’ Betty of the truth. „ Say “Yes you are right, it is Susan”. „ Say “When we get home, you can look at pictures of Susan and remember her”. 1. Check your understanding Mistaking a person for someone else. 2. How to stop or reduce delusions and hallucinations? Let’s look at the following example Martin’s wife Betty is living with dementia. One day, Martin and Betty are out for a walk. They see a woman in the distance. Betty starts calling loudly “Susan, Susan, I’m over here”. Then she starts running towards a woman unknown to Martin; a young lady who is probably about 20 years old. Betty mistakenly believes that the young woman in the park is her sister who died in a car accident over 30 years ago. The young woman ignores her. Betty becomes very upset. Le ss on 6 . D elu sio ns an d ha llu cin at io ns iS u p p o rt In te rv e n ti o n M an u al MODULE 5 226 „ Soothe her father, by saying in a calm voice “You are safe, I am with you”. „ Soothe her father, by taking his hand and patting it. „ Check if there is anything in the environment that could be causing Larry's hallucination, such as shadows in the room from the sunlight. Make changes as necessary. „ Lead him away from the room. „ Say that it is simply not true, that there are no other people in the room. What would you recommend Mercedes do? Please check all correct answers. 2. Check your understanding Seeing people that are not there. Now let’s look at another example Mercedes’ father Larry is living with dementia. One day, Larry is a bit restless. Suddenly, he starts to look very frightened while staring at a corner in the room. He calls out to his daughter and says, “Do you see them talking?” He screams, “What are you doing there?” Mercedes is so overwhelmed that she feels like running away. She thinks to herself “Dad’s illness is much worse than I thought it was.” Check with the doctor regarding medication side effects that the person living with dementia is using. These may contribute to the problem. Tip Le ss on 6 . D elu sio ns an d ha llu cin at io ns iS u p p o rt In te rv e n ti o n M an u al MODULE 5 227 Let’s look at your own situation It is important to apply what you have learned to your own situation. Which one would you try first? Unreal or unusual thoughts do not happen all the time. What would you do if the person you care for experiences them? Try to describe different appropriate responses in the space below. 2. Activity Sometimes people with dementia have pleasant hallucinations, like seeing beautiful colours or children who are not there. If these visions are not causing the person distress then try to enjoy them together. Remember Le ss on 6 . D elu sio ns an d ha llu cin at io ns iS u p p o rt In te rv e n ti o n M an u al MODULE 5 228 z Unreal thoughts or seeing/hearing things that are not there (delusions and hallucinations) are common in people with dementia. z They can be very upsetting to the person living with dementia and the carer. z Often, people with these visions and unreal thoughts need a lot of reassurance. z It is important to identify ways to reduce them, not by arguing with the person you care for, but by comforting and distracting them. z Check the environment to see if there is a cause for the delusion or hallucination. z If one approach doesn’t work, try another one. z Remind yourself that unreal thoughts or visions are part of the disease. z Take a deep breath and think about the best ways to respond that will be the least distressing to you and the person you care for if they are experiencing unreal thoughts or visions. You finished this lesson, well done! Let’s review what you have learned Le ss on 6 . D elu sio ns an d ha llu cin at io ns iS u p p o rt In te rv e n ti o n M an u al MODULE 5 229 iS u p p o rt In te rv e n ti o n M an u al ANSWERS - DEALING WITH BEHAVIOUR CHANGES Lesson 6. Delusions and hallucinations 9 ✓Soothe her in a calm voice. This is a good response because people with delusions and hallucinations may feel frightened and insecure. 9 ✓Lead her away from the woman in the park. This is a good response because it will distract her from the young woman in the park. ✓ 8 Directly tell the truth, harshly, to set the record straight. This is not a good response as it may make Betty even more upset. ✓✓ 8 Argue with Betty that the young woman is not her sister. This is not a good response as it may make Betty even more upset. 9 Say that the young woman in the park is someone who looks like her, but it is not her. This is a good response because it maintains a positive social environment. 8 Involve the woman in the park in any way. This is not helpful because it may make the situation more complicated. 8 Try to ‘convince’ Betty of the truth. This is not a good response as Betty may not understand. 8 Say “Yes you are right, it is Susan”. This is not correct because it is not the truth. 9 Say “When we get home, you can look at pictures of Susan and remember her”. This is a good response because Martin addresses the importance of her sister, without arguing that the young woman Betty saw in the park was not her sister. 1. Check your understanding Mistaking a person for someone else. AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 6 iS u p p o rt In te rv e n ti o n M an u al MODULE 5 230 iS u p p o rt In te rv e n ti o n M an u al ANSWERS - DEALING WITH BEHAVIOUR CHANGES Lesson 6. Delusions and hallucinations 2. Check your understanding Seeing people that are not there. AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 6 9 Soothe him, by saying in a calm voice “You are safe, I am with you”. This is a good response because people with hallucinations are often feeling frightened and insecure. 9 Check if there is anything in the environment that could be causing his hallucinations, such as shadows in the room from the sunlight. Make changes as necessary. This is a good response because although a person’s brain may be misinterpreting the environment there could still be a reasonable cause for confusion. 9 Lead him away from the room. This is a good response because changing the environment may distract her father and end the hallucination. 8 Say that it is simply not true, that there are no other people in the room. This is not a good response because arguing about what one sees or hears will not help a person experiencing delusions or hallucinations to calm down. iS u p p o rt In te rv e n ti o n M an u al MODULE 5 231 Why is this lesson important? If a person living with dementia repeats things over and over it can be stressful for themselves and the carer. We will refer to this as a ‘repetitive behaviour’. How will this lesson help me? This lesson will help you understand why repetitive behaviours occur, and how to respond to, and reduce, them. What will I learn? 1. What is repetitive behaviour? 2. How to comfort a person living with dementia in case of repetitive behaviours? Lesson 7. Repetitive behaviour 1. What is repetitive behaviour? A person living with dementia may forget what they have said, heard or did from one moment to the next, leading to repeated questions and actions. Usually doing things over and over is not harmful to the person living with dementia, if the carer knows how to deal with it. If not, the person living with dementia can become anxious, aggressive or depressed and the carer can become stressed. As a result, carers may respond inappropriately, for example by screaming, which often makes the person with dementia feel guilty. Le ss on 7 . R ep et iti ve b eh av io ur iS u p p o rt In te rv e n ti o n M an u al MODULE 5 232 Let’s look at your own situation Does the person you care for ever do or say things over and over again? What behaviour(s) do they repeat? You can describe them in the space below, like a diary. 1. Activity Le ss on 7 . R ep et iti ve b eh av io ur iS u p p o rt In te rv e n ti o n M an u al MODULE 5 233 What would you recommend to John? Please select all correct responses. „ Say “What’s wrong with you? Can’t you remember? We just had lunch!” „ Stay calm and reassure his father that his wife will be home soon. „ Engage his father in an activity. „ Write down the answers to his questions, for example where his wife is and when she is expected to return. „ Walk away. „ Accept the repetitive questions. If it isn’t harmful, let it be. Find ways to adapt. „ Offer his father a snack or a drink. 1. Check your understanding Repeating questions. Let’s look at this example John is taking care of his father Joe, because his mother, the main carer, is out of the house for a few hours. All seems fine, although John notices that his father is rather tense because John’s mother is not there. John and Joe eat lunch together. Sometime after finishing lunch, Joe asks “When is lunch?” and, “What are we having for lunch?” John does not think much of it at first. Then, again, a few minutes later, Joe asks “When is lunch?”, “What are we having for lunch?”, and “Where is your mother?” Joe repeats these questions again and again. John is confused about why Joe is doing this and gets more and more worried about his father. John continues to answer the questions, but gets a bit upset and raises his voice. John responds, loudly and is annoyed, “I have already answered these questions, why do you keep asking?” 2. How to comfort a person living with dementia in case of repetitive behaviours? Le ss on 7 . R ep et iti ve b eh av io ur iS u p p o rt In te rv e n ti o n M an u al MODULE 5 234 Let’s look at your own situation It is important to apply what you have learned to your own situation. The spaces below are for you, like a diary. Now look back at the examples that you identified in the previous activity. Choose the repetitive behaviour that is the most stressful to the person that you care for, or to yourself, and list it below. What could you do to help reduce this behaviour? How could you change your response to this behaviour? 2. Activity Le ss on 7 . R ep et iti ve b eh av io ur iS u p p o rt In te rv e n ti o n M an u al MODULE 5 235 z Doing or saying things over and over again (repetitive behaviour) is common in people with dementia. z Repetition can be very stressful to deal with. z In case of repetition, try to focus on comforting the person you care for. z Try to identify what comes before the repetitive behaviour and what may increase it. Then try to change it. Try to identify how you respond and change that also. z Realize there may be worse, but also better moments. z Remind yourself that repetitive behaviours are part of the disease. z Take a deep breath and think about the best ways to respond that will be the least distressing to you and the person living with dementia if they do or say things over and over again. You finished this lesson, well done! Let’s review what you have learned Le ss on 7 . R ep et iti ve b eh av io ur iS u p p o rt In te rv e n ti o n M an u al MODULE 5 236 iS u p p o rt In te rv e n ti o n M an u al 8 Say “What’s wrong with you? Can’t you remember? We just had lunch!” This is not a good response because John is blaming his father for something that he can’t help. 9 Stay calm and reassure his father that his wife will be home soon. This is a good response as repetition might worsen due to Joe’s feelings of insecurity. He seems to feel insecure because his wife went out. By reassuring Joe that his wife will come back soon, the repetition may lessen or stop. 9 Engage his father in an activity. This can be a good response because it may distract his father and offer something else to see, hear or do. 9 Write down the answers to his questions, for example where his wife is and when she is expected to return. This might work well, may reassure Joe and stop him from asking again. 8 Walk away. This response is not so good because it will only upset his father more. 9 Accept the repetitive questions. If it isn’t harmful, let it be. Find ways to adapt. This can be a good response. Perhaps if it is just repetitive questioning, by remaining calm the behaviour may decrease. 9 Offer his father a snack or a drink. This might be a good response. Perhaps Joe is still hungry or thirsty. It may help to calm him and meet his need. 1. Check your understanding Repeating questions. ANSWERS - DEALING WITH BEHAVIOUR CHANGES Lesson 7. Repetitive behaviours AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 7 iS u p p o rt In te rv e n ti o n M an u al MODULE 5 237 Why is this lesson important? Concerns about walking and getting lost can cause distress. Carers like you may worry whether the person will get lost. How will this lesson help me? This lesson will help you understand the reasons for walking and what to do to reduce the chances of the person living with dementia getting lost. What will I learn? 1. Why is walking a concern? 2. Why a person with dementia might want to walk around? 3. How can I manage habits and reduce the chances that the person I care for gets lost? Lesson 8. Walking and getting lost 1. Why is walking a concern? People with dementia may have the habit of walking around the home or leaving the house and wanting to walk around the neighbourhood, this is also called wandering. This is very common. However, they may get lost. So, safety is a primary concern when people with dementia are out alone. It is important to prevent wandering. This lesson will teach you why people with dementia may have a desire to walk. You will also learn about the steps that you can take to help make this safer. It is important to find ways to help prevent people with dementia from getting lost or ending up in an unsafe situation. Le ss on 8 . W al ki ng an d ge tti ng lo st iS u p p o rt In te rv e n ti o n M an u al MODULE 5 238 Does the person you care for sometimes walk around or walk away? You can describe what happens in the space below, like in a diary. 1. Activity 2. Why a person with dementia might want to walk around? A person with dementia who wanders or walks away may be: z Wanting to exercise. z Continuing a lifelong habit of walking regularly. z Relieving boredom due to not being sufficiently stimulated. z Using up energy from sitting all day. z Relieving pain and discomfort from joint pain or stiffness. z Responding to stress or anxiety. z Feeling lost or uncertain about their surroundings. z Going out and forgetting where they were going. z Searching for someone or something in the past or present. z Seeking fulfilment and purpose such as the desire to go to work. z Getting confused about the time. Le ss on 8 . W al ki ng an d ge tti ng lo st iS u p p o rt In te rv e n ti o n M an u al MODULE 5 239 There are certain things that may help manage a person’s walking habits and prevent them from getting lost. For example, try to: 3. How can I manage habits and reduce the chances that the person I care for gets lost? z Make sure that the person carries some form of identification. z Make sure that your home is secure, that the person is safe in your home and cannot leave without you knowing. For example, camouflaging doors and door knobs may help, or using a bell or curtain that makes noise when someone uses the door. z Keep an up-to-date photograph in case the person you care for gets lost and you must ask for help from others. z After the person you care for is found, speak calmly, with acceptance and love, try to avoid blaming and showing anger. z Keep to the routines and activities of the person you care for. Identify the most likely times of the day that their walking may occur and plan activities such as a walk in the park together at that time. z Reassure the person you care for if they feel lost, abandoned or disoriented, or want to leave to “go home" or “go to work". For example, try saying: “we are staying here tonight. We are safe and I'll be with you. We can go home in the morning after a good night's rest." Try to refrain from correcting the person living with dementia. z Ensure that all basic needs are met. Has the person gone to the bathroom? Are they thirsty or hungry? z Avoid busy places that are confusing and can cause disorientation, such as shopping malls, markets, grocery stores or other crowded places. Le ss on 8 . W al ki ng an d ge tti ng lo st iS u p p o rt In te rv e n ti o n M an u al MODULE 5 240 Let’s look at an example Amit has dementia and is supported by his wife, Samia. Samia is cooking dinner when she hears Amit heading for the door. She knows that he likes to go for afternoon walks, but now is not a good time since she is cooking. What would you recommend to Samia? Please select all correct responses. „ Yell to Amit from the kitchen, “please stop! I can’t come with you now.” „ Turn the cooker off and follow Amit. „ Forbid Amit to leave and pull him back into the house. „ Go to where Amit is standing by the door and calmly say: “let’s eat dinner first and we’ll go for a walk later.” „ Lock the door so that Amit cannot leave. „ Let Amit leave and call a neighbour to keep an eye out for him. „ Ask another family member to go for a walk with him. „ Ask Amit to help with a task in the kitchen. „ Schedule more afternoon walks before dinner. 1. Check your understanding Dealing with walking away. Le ss on 8 . W al ki ng an d ge tti ng lo st iS u p p o rt In te rv e n ti o n M an u al MODULE 5 241 Let’s look at your own situation It is important to apply what you have learned to your own situation. The spaces below are for you, like a diary. What are the possible reasons why the person you care for may have the desire to walk? Please select all answers that apply. Based on the reasons that you selected, how might you react or respond the next time the person you care for wants to go outside or walk? 2.1. What could you do to help the person enjoy walking in a safe way? Take a moment to summarize the points that you have learned in this lesson, which will help you going forward: „ Wanting to exercise. „ Continuing a lifelong habit of walking regularly. „ Relieving boredom due to not being sufficiently stimulated. „ Using up energy from sitting all day. „ Relieving pain and discomfort from joint pain or stiffness. „ Responding to stress or anxiety. „ Feeling lost or uncertain about their surroundings. „ Going out and forgetting where they were going. „ Searching for someone or something in the past or present. „ Seeking fulfilment and purpose such as the desire to go to work. „ Getting confused about the time „ Other (please state): 2. Activity Le ss on 8 . W al ki ng an d ge tti ng lo st iS u p p o rt In te rv e n ti o n M an u al MODULE 5 242 z Walking around or walking away is common. z Walking can be healthy exercise, reduce boredom, and be a common habit or routine of the person. z Walking away or walking alone might be a safety risk. z Concerns about walking and getting lost can be very upsetting to the person living with dementia and the carer. z It is important to identify possible reasons for walking around or walking away. z How you respond to the desire to walk should be based on the possible reasons for it. z If one approach doesn’t work, try another one. z Realize that there may be worse, but also better moments. z Take a deep breath and think about the best ways to respond that will be the least distressing to you and the person living with dementia. If you want to know more about how to plan an enjoyable day, please refer to the Lesson 5. An enjoyable day in Module 4. You finished this lesson, well done! Let’s review what you have learned Le ss on 8 . W al ki ng an d ge tti ng lo st iS u p p o rt In te rv e n ti o n M an u al MODULE 5 243 iS u p p o rt In te rv e n ti o n M an u al Relaxation exercise - Neck movements AN SW ER S - D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 8 ANSWERS - DEALING WITH BEHAVIOUR CHANGES Lesson 8. Walking and getting lost 8 Yell to Amit from the kitchen, “please stop! I can’t come with you now.” This is not a good response because yelling at Amit from the kitchen may confuse and agitate him. It may also not stop him from going out on his own. 9 Turn the cooker off and follow Amit. This is a good response if there are no other alternatives. 8 Forbid Amit to leave and pull him back into the house. This is not a good response because Amit may get agitated and resist being pulled which could result in Amit or Samia being harmed. 9 Go to where Amit is standing by the door and calmly say: “Let’s eat dinner first and we’ll go for a walk later.” This is a good response because Samia stays calm, does not yell, and honors Amit’s wishes by telling him that they will go together after dinner. 9 Lock the door so that Amit cannot leave. This is a good response if no other options exist and Samia is in the house with Amit. For fire safety reasons, a person living with dementia who requires supervision should never be locked inside a house without another person there. 9 Let Amit leave and call a neighbour to keep an eye out for him. This is a good option if Samia has prearranged with the neighbours to keep an eye out for him. If Amit is in the very early stages of dementia, he may be okay while going out on his own to places that are familiar to him. 9 Ask another family member to go for a walk with him. This is a good option. Samia can finish cooking dinner and Amit can enjoy a nice walk before dinner. 1. Check your understanding Dealing with walking away. iS u p p o rt In te rv e n ti o n M an u al MODULE 5 244 iS u p p o rt In te rv e n ti o n M an u al Relaxation exercise - Neck movements AN SW ER S - D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 8 9 Ask Amit to help with a task in the kitchen. This is a good response because it involves distracting Amit from going for a walk alone and gives him purpose and keeps him occupied. 9 Schedule more afternoon walks before dinner. This is a good response because planning ahead will prevent Samia from being interrupted when cooking dinner to assist Amit. It may also help Amit to release some energy and come home to relax before dinner. 1. Check your understanding (continued) Dealing with walking away. iS u p p o rt In te rv e n ti o n M an u al MODULE 5 245 Why is this lesson important? Changes in judgement can be upsetting to the person living with dementia and the carer. How will this lesson help me? This lesson will help you understand the reasons causing changes in judgement and teach you skills to manage this. What will I learn? 1. What are changes in judgement? 2. How can you manage changes in judgement? 3. What to do if the changes in judgement are more serious? Lesson 9. Changes in judgement 1. What are changes in judgement? Changes in judgement may include saying the wrong thing at the wrong time, acting inappropriately in a situation, or not understanding one’s own limitations. Usually these actions are not harmful, but they can be stressful or embarrassing for the person living with dementia or the carer. People with dementia are often looking for guidance or reassurance. Le ss on 9 . C ha ng es in ju dg em en t iS u p p o rt In te rv e n ti o n M an u al MODULE 5 246 Did you ever notice that the person you care for sometimes has a change in their judgement? If so, what did you observe? Please describe this in the space below. How did it affect you as the carer? 1. Activity Tip Changes in judgement will increase as dementia progresses. In this lesson you can practice several ways of responding to changes in judgement and find out what may help. Le ss on 9 . C ha ng es in ju dg em en t iS u p p o rt In te rv e n ti o n M an u al MODULE 5 247 2. How can you manage changes in judgement? Let’s go through an example Ivan is in town visiting his aunt Isabel who has dementia. They are on their way to a restaurant for dinner. In order to get there, Ivan decides to hail a taxi. All of a sudden, the car pulls up alongside Isabel and startles her. Isabel, who is normally a very gentle woman, starts scolding the taxi driver. What would you recommend to Ivan to help him deal with this situation? Please select all correct responses. „ Put his hand on Isabel’s mouth in order to stop her scolding the driver. „ Walk Isabel back to her apartment and leave because what happened is embarrassing. „ Stay calm and reassure Isabel everything is alright. „ Accept the behaviour. If the taxi driver doesn’t seem to notice, let it be. Find ways to adapt. „ Ivan could carry a business card that explains, ‘My companion has dementia, please be patient with us.’ and give this card to the taxi driver. 1. Check your understanding Managing changes in judgement. Le ss on 9 . C ha ng es in ju dg em en t iS u p p o rt In te rv e n ti o n M an u al MODULE 5 248 3. What to do if changes in judgement are more serious? The last example was a brief and one-time experience for Ivan. However, what happens if the changes in judgement experienced by a person living with dementia are more serious? Here are three examples to help you learn how to react. Mishandling finances Sophie has dementia and lives alone. Her cousin Julia has come to visit her. Despite the fact that Sophie has always been organised, Julia arrives to find that there is a large pile of unopened mail on the kitchen table. Julia wonders if Sophie has had some trouble paying her bills. She asks Sophie about her finances. Sophie cannot remember whether she has paid her bills or not, does not know when they are due, and cannot recall how much money she has in her bank account. Julia becomes quite concerned. What would you recommend to Julia? Please select all correct responses. „ Stay calm and call Sophie’s daughter. „ Go to the bank and ask for control of Sophie’s finances. „ Leave because she feels uneasy. „ Ask Sophie if she would like some help in opening her mail. „ ✓Try to find out whether Sophie has someone who handles her finances, like a family member or a professional. 2. Check your understanding Managing more serious changes in judgement (1). Le ss on 9 . C ha ng es in ju dg em en t iS u p p o rt In te rv e n ti o n M an u al MODULE 5 249 Insisting on driving Hugo is living with dementia. His neighbour, Pablo, notices that his car is parked very strangely one day, obstructing some of the other cars on the street. Pablo walks out of his apartment, sees Hugo and attempts to start a conversation. Instead of stopping, Hugo jumps in his car, speeds off and takes an illegal left turn out of the compound. Hugo returns quickly and nothing bad seems to have happened. What would you recommend to Pablo? Please select all correct responses. „ Immediately seize Hugo’s car keys when he returns. This will prevent it from happening again. „ Stay calm and ask whether Hugo has any other places to go that day, and if so, offer him a ride. „ Ignore the situation because it is embarrassing. „ Ask Hugo if he would like some help figuring out transportation. „ Tell Hugo that he is concerned about his driving and suggest visiting his doctor to discuss it. „ Report the incident to Hugo’s carer, friend or family member. 3. Check your understanding Managing more serious changes in judgement (2). It is better if the decision not to drive comes from the person living with dementia. Giving up driving is typically a difficult time in the person’s life where they are losing independence. Alternatives such as offering regular rides, teaching the person how to use public transportation or arranging taxis will help the person stay active and involved in their community activities. It is important that the person does not become isolated or lonely once they give up driving. More effort will be needed to keep them connected to the world outside their home. Tip Le ss on 9 . C ha ng es in ju dg em en t iS u p p o rt In te rv e n ti o n M an u al MODULE 5 250 Inappropriate sexual advances Mateo is in his late 70s, has dementia and lives with his family. Two days a week, an in-home aide, Camila, who is 22 years old, comes to help him take a bath and administer his medication. This arrangement has been working well for several months. One day, while preparing for his bath, Mateo makes some sexual remarks and tries to pull Camila close to him. Camila is shocked and surprised. She runs out of the room and tells the family that she can no longer work there. If the inappropriate advances continue, the family might want to consider hiring a male in-home aide instead of a female one which could prevent this behaviour. They also might seek help from a professional. Tip What would you recommend to Mateo’s family? Please select all correct responses. „ Stay calm and tell Mateo that this behaviour is unacceptable. Explain who Camila is. „ Change the bathing situation. Perhaps Camila can set up a sponge bath and Mateo can do more himself. „ Change the environment. Put a towel or robe over Mateo’s shoulders while he is being bathed to keep him covered for privacy. „ Shout at Mateo, shaming him for his conduct. „ Ignore the situation. 4. Check your understanding Managing more serious changes in judgement (3). Le ss on 9 . C ha ng es in ju dg em en t iS u p p o rt In te rv e n ti o n M an u al MODULE 5 251 Let’s look at your own situation It is important to apply what you have learned to your own situation. Earlier, we asked whether the person you care for sometimes shows changes in judgement. After going through these examples, think again about your own situation. The spaces below are for you, like a diary. Does the person living with dementia sometimes show changes in judgement? In what way could you respond? Take a moment to summarize the points that you have learned, which will help you deal with changes in judgment in the future. 2. Activity Changes in judgement may hamper decision-making. If you want to know more, review Lesson 3. Supported decision-making in Module 2. Remember Le ss on 9 . C ha ng es in ju dg em en t iS u p p o rt In te rv e n ti o n M an u al MODULE 5 252 z Changes in judgement usually increase as dementia progresses. z Changes in judgement can be very upsetting for the person living with dementia and the carer. z It is important to reduce or prevent changes in judgement, whenever possible. z Realize that there may be good and bad days. z Remind yourself that this is a part of the disease. z Take a deep breath and think about the best ways to respond that will be the least distressing to you and the person you care for. z Plan for increasing levels of changes in judgement. You finished this lesson, well done! Let’s review what you have learned Le ss on 9 . C ha ng es in ju dg em en t iS u p p o rt In te rv e n ti o n M an u al MODULE 5 253 iS u p p o rt In te rv e n ti o n M an u al 8 ✓Put his hand on Isabel’s mouth in order to stop her scolding the driver. This response is not good because it may even worsen the situation and cause Isabel further agitation. ✓ 8 Walk Isabel back to her apartment and leave because what happened is embarrassing. This response is not good because Isabel may feel bad and isolated. 9 ✓Stay calm and reassure Isabel everything is alright. This is a good response because it shows Ivan cares about Isabel. It may stop her from scolding the taxi driver and make her feel more relaxed. What would you recommend to Ivan? 9 ✓Accept the behaviour. If the taxi driver doesn’t seem to notice, let it be. Find ways to adapt. This can be an appropriate response if the behaviour is not harming anyone. 9 Ivan could carry a business card that explains, ‘My companion has dementia, please be patient with us.’ and give this card to the taxi driver. This is a good response because it relieves Ivan from explaining the situation to the taxi driver which may embarrass Isabel. 1. Check your understanding Managing changes in judgement. ANSWERS - DEALING WITH BEHAVIOUR CHANGES Lesson 9. Changes in judgement AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 9 iS u p p o rt In te rv e n ti o n M an u al MODULE 5 254 iS u p p o rt In te rv e n ti o n M an u al 9 Stay calm and call Sophie’s daughter. This response is good because Julia shares her worries with Sophie’s closest relative, her daughter, who might know more and can arrange help if needed. 8 Go to the bank and ask for control of Sophie’s finances. This is not appropriate because it is Sophie’s decision to appoint a person that she is comfortable with to help manage her finances. 8 Leave because she feels uneasy. This response is not appropriate. If Sophie has problems dealing with her finances, letting the situation continue could make things worse. What would you recommend to Julia? 9 Ask Sophie if she would like some help with opening her mail. This response is good because Sophie may be able to pay her bills if given the right prompts, such as opening the bills in front of her and cueing her to pay one at a time. 9 Try to find out whether Sophie has someone who handles her finances, like a family member or a professional. This is a good response because Sophie may be at the point in her illness where she is no longer able to handle the finances on her own. If it seems that she is not getting any help with handling her finances, Julia may want to call her daughter to share her worries. 2. Check your understanding Managing more serious changes in judgement (1). ANSWERS - DEALING WITH BEHAVIOUR CHANGES Lesson 9. Changes in judgement AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 9 iS u p p o rt In te rv e n ti o n M an u al MODULE 5 255 iS u p p o rt In te rv e n ti o n M an u al 8 Immediately seize Hugo’s car keys when he returns because this will prevent it from happening again. This is not a good response because Pablo cannot decide whether his neighbour should drive anymore, and Hugo may become angry. 9 Stay calm and ask whether Hugo has any other places to go that day, and if so, offer him a ride. This is a good response because it prevents Hugo from driving unsafely and provides safe transportation, so Hugo can run his errands. 8 Ignore the situation because it is embarrassing. This response is not good because Hugo’s driving may cause harm to himself and others. What would you recommend to Pablo? 9 Ask Hugo if he would like some help figuring out transportation. This response is appropriate because Hugo may be able to safely ride a bus or walk, preventing any unsafe behaviour. 9 Tell Hugo that he is concerned about his driving and suggest visiting his doctor to discuss it. This is a good response as Pablo respects Hugo by being honest and raising a concern. 9 Report the incident to Pablo’s carer, friend or family member. This is a possible response. Pablo may not know if Hugo has dementia and could be concerned about the risk of harm to Hugo and others. 3. Check your understanding Managing more serious changes in judgement (2). AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 9 iS u p p o rt In te rv e n ti o n M an u al MODULE 5 256 iS u p p o rt In te rv e n ti o n M an u al 9 Stay calm and tell Mateo that this behaviour is unacceptable. Explain who Camila is. This option is a good one. Mateo’s family does not overreact because they remember it is the disease taking effect. They redefine the appropriate boundaries for Camila’s safety. 9 Change the bathing situation. Perhaps Camila can set up a sponge bath and Mateo can do more himself. This is a good option. Letting Mateo do more himself will distract him. In this way, both Camila and Mateo’s dignity are maintained. What would you recommend to Mateo’s family? 9 Change the environment. Put a towel or robe over Mateo’s shoulders while he is being bathed to keep him covered for privacy. This is a good response. Perhaps because Mateo is naked, he misunderstands the situation. 8 Shout at Mateo, shaming him for his conduct. This response is not good because as part of his dementia Mateo may not know that these advances are inappropriate. Therefore, try not to overreact. 8 Ignore the situation. This response is not good because Mateo may continue to make inappropriate sexual advances and cause distress to Camila. 4. Check your understanding Managing more serious changes in judgement (3). AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 9 iS u p p o rt In te rv e n ti o n M an u al MODULE 5 257 Why is this lesson important? Certain changes in behaviour can be particularly stressful for the person living with dementia and the carer. How will this lesson help me? This lesson will summarize ways to prevent, reduce or manage behaviour changes. What will I learn? 1. The most important things to keep in mind when dealing with challenging behaviours. 2. Practical tips on not blaming yourself, sharing your feelings with others and making time for yourself. Lesson 10. Putting it all together 1. The most important things to keep in mind when dealing with behaviour changes z Behaviour changes can be stressful for the person you care for and yourself. This is quite common. z Try to make the person you care for feel more comfortable. z Look for ways to prevent or reduce behaviour changes that are stressful, for example by using memory aids. z Try to distract the person you care for, don’t argue. z When one approach does not work, try another one. z Realize that there may be good and bad days. z Consult a medical doctor to identify any causes related to medication or illness. z Identify whether the environment or your approach could be causing the particular symptom. z Remind yourself that behaviour changes are part of the disease but other possible causes should be identified before accepting the disease as a cause. Le ss on 1 0. P ut tin g it al l t og et he r iS u p p o rt In te rv e n ti o n M an u al MODULE 5 258 2. Practical tips on not blaming yourself, sharing your feelings with others and making time for yourself Here are some tips from related lessons. If you did not take these lessons yet, you can complete them after finishing this one. z Don’t blame yourself or the person living with dementia for the problems that you encounter. If you want to work on ways to manage your feelings, take a look at the last page of Lesson 3. Thinking differently in Module 3. z Share your feelings about your experiences as a carer with others. If you keep them to yourself it may be more difficult for you to look after your family member or friend. If you want to learn more about involving others, take a look at Lesson 4. Involving others in Module 2. z It is essential that you make time for yourself. This will allow you to do the things that you value in life, such as spending time with others or enjoying your favourite hobbies. If you want to learn more about doing pleasant activities, take a look at Lesson 2. Making time for pleasant activities in Module 3. You finished this lesson, well done! Le ss on 1 0. P ut tin g it al l t og et he r

Worldwide, carers of people with dementia should have access to information and support in order to effectively respond to, and manage, the physical, mental and social demands associated with caring for someone living with dementia. This iSupport manual has been developed to provide accessible, evidence-based training and information, tailored to carers’ needs. It aims to improve knowledge and caregiving skills, such as carers’ ability to cope with dementia symptoms and care for themselves. iSupport is also available online and can be accessed at www.isupportfordementia.org/en. For further information, please contact: Department of Mental Health and Substance Abuse World Health Organization Avenue Appia 20 CH-1211 Geneva 27 Switzerland Email: whodementia@who.int Wesbite: www.who.int/mental_health/neurology/dementia/en ISBN: 9789241515863

iSupport For Dementia Training and support manual for carers of people with dementia iS u p p o rt In te rv e n ti o n M an u al iSupport For Dementia Training and support manual for carers of people with dementia © World Health Organization 2019 Some rights reserved. This work is available under the Creative Commons Attribution-NonCommercial-ShareAlike 3.0 IGO licence (CC BY-NC-SA 3.0 IGO; https://creativecommons.org/licenses/by-nc-sa/3.0/ igo). Under the terms of this licence, you may copy, redistribute and adapt the work for non-commercial purposes, provided the work is appropriately cited, as indicated below. In any use of this work, there should be no suggestion that WHO endorses any specific organization, products or services. The use of the WHO logo is not permitted. If you adapt the work, then you must license your work under the same or equivalent Creative Commons licence. If you create a translation of this work, you should add the following disclaimer along with the suggested citation: “This translation was not created by the World Health Organization (WHO). WHO is not responsible for the content or accuracy of this translation. The original English edition shall be the binding and authentic edition”. Any mediation relating to disputes arising under the licence shall be conducted in accordance with the mediation rules of the World Intellectual Property Organization. Suggested citation. iSupport for dementia. Training and support manual for carers of people with dementia. Geneva: World Health Organization; 2019. Licence: CC BY-NC-SA 3.0 IGO. Cataloguing-in-Publication (CIP) data. CIP data are available at http://apps.who.int/iris. Sales, rights and licensing. To purchase WHO publications, see http://apps.who.int/bookorders. To submit requests for commercial use and queries on rights and licensing, see http://www.who.int/about/ licensing. Third-party materials. If you wish to reuse material from this work that is attributed to a third party, such as tables, figures or images, it is your responsibility to determine whether permission is needed for that reuse and to obtain permission from the copyright holder. The risk of claims resulting from infringement of any third-party-owned component in the work rests solely with the user. General disclaimers. The designations employed and the presentation of the material in this publication do not imply the expression of any opinion whatsoever on the part of WHO concerning the legal status of any country, territory, city or area or of its authorities, or concerning the delimitation of its frontiers or boundaries. Dotted and dashed lines on maps represent approximate border lines for which there may not yet be full agreement. The mention of specific companies or of certain manufacturers’ products does not imply that they are endorsed or recommended by WHO in preference to others of a similar nature that are not mentioned. Errors and omissions excepted, the names of proprietary products are distinguished by initial capital letters. All reasonable precautions have been taken by WHO to verify the information contained in this publication. However, the published material is being distributed without warranty of any kind, either expressed or implied. The responsibility for the interpretation and use of the material lies with the reader. In no event shall WHO be liable for damages arising from its use. iSupport for dementia. Training and support manual for carers of people with dementia ISBN 978-92-4-151586-3 Layout by Van Cleef Emnacen CONTENTS Module 1. Introduction to dementia 1 Module 2. Being a carer 11 Lesson 1. The journey together 12 Lesson 2. Improving communication 24 Lesson 3. Supported decision-making 42 Lesson 4. Involving others 57 Module 3. Caring for me 69 Lesson 1. Reducing stress in everyday life 70 Lesson 2. Making time for pleasant activities 82 Lesson 3. Thinking differently 92 Module 4. Providing everyday care 107 Lesson 1. Eating and drinking - more pleasant mealtimes 108 Lesson 2. Eating, drinking and preventing health problems 121 Lesson 3. Toileting and continence care 128 Lesson 4. Personal care 140 Lesson 5. An enjoyable day 152 Module 5. Dealing with behaviour changes 165 Lesson 1. Introduction to behaviour changes 166 Lesson 2. Memory loss 177 Lesson 3. Aggression 187 Lesson 4. Depression, anxiety and apathy 201 Lesson 5. Difficulty sleeping 210 Lesson 6. Delusions and hallucinations 223 Lesson 7. Repetitive behaviour 231 Lesson 8. Walking and getting lost 237 Lesson 9. Changes in judgement 245 Lesson 10. Putting it all together 257 ACKNOWLEDGEMENTS i PREFACE iii USER GUIDE iv iS u p p o rt In te rv e n ti o n M an u al i Technical Reviewers and Advisors Emiliano Albanese, WHO Collaborating Center for Training and Research in Mental Health, University of Geneva, Switzerland; Nicole Batsch, Alzheimer’s Disease International, London, UK; Upasana Baruah, National Institute of Mental Health and Neurosciences, Bangalore, India; Kiki Edwards, Rossetti Care, Ibadan, Nigeria; Kieren Egan, WHO Collaborating Center for Training and Research in Mental Health, University of Geneva, Switzerland; Mariella Guerra, Instituto de la Memoria, Lima, Peru; Jayna Holroyd-Leduc, University of Calgary, Canada; Timothy Kwok, Jockey Club Centre for Positive Ageing, The Chinese University of Hong Kong, Hong Kong; Marleen Prins, WHO Collaborating Centre for Dissemination of Good Practices in Mental Health, Trimbos-Institute, Utrecht, Netherlands; Santosh Loganathan, National Institute of Mental Health and Neurosciences, Bangalore, India; Prafulla Shivakumar, National Institute of Mental Health and Neurosciences, Bangalore, India; Iris van Asch, WHO Collaborating Centre for Dissemination of Good Practices in Mental Health, Trimbos-Institute, Utrecht, Netherlands; Mathew Varghese, National Institute of Mental Health and Neurosciences, Bangalore, Vision, conceptualization and project management Tarun Dua, Anne Margriet Pot (project manager), Shekhar Saxena, Diana Zandi. Project coordination and editing The team that coordinated the development of the manual, including writing and editing, was comprised of Neerja Chowdhary, Stéfanie Fréel, Anne Margriet Pot and Katrin Seeher. Contribution Valuable help and advice was received from many organizations, experts, people with dementia, and carers who have contributed to the development of iSupport, including but not limited to those mentioned below. Key Contributions Dolores Gallagher-Thompson, Stanford University, Stanford, USA; Kala Mehta, Stanford University, Stanford, USA; Bernadette Willemse, WHO Collaborating Centre for Dissemination of Good Practices in Mental Health, Trimbos-Institute, Utrecht, Netherlands; Lilly Xiao, Flinders University, Adelaide, Australia. ACKNOWLEDGEMENTS AC KN OW LE DG EM EN TS iS u p p o rt In te rv e n ti o n M an u al ii India; Huali Wang, Dementia Care & Research Center, Peking University Institute of Mental Health, Beijing, China; Marc Wortmann, Marc Wortmann Consulting. WHO Staff, Consultants and Interns Alison Brunier, Kenneth Carswell, Emma Cradock, Sophie D’Souza, Melissa Harper Shehadeh, Marije Kaat, Dévora Kestel, Neha Kinariwalla, Annet Kleiboer, Harleen Rai, Dag Rekve, Hiral Shah, Mark van Ommeren, Shuo Wang. Administrative Support Caroline Herment, Jacqueline Lashley, Adeline Loo, Ophel Riano. Production Team Development (web version): Iris Rosier, Kirsten van der Werff, Katherina Martin Abello, WHO Collaborating Centre for Dissemination of Good Practices in Mental Health, Trimbos-Institute, Utrecht, Netherlands, in collaboration with; Deepak Bhikharie, Edi Recica, Kees Schouten, Aan Zee, Noordwijk aan zee, Netherlands. Illustrations: Janet van der Werff, Drachten, Netherlands. Graphic design and layout (iSupport manual): Van Cleef Emnacen, Philippines. Editing: Harriet Payne, Alzheimer’s Disease International, London, U.K. Financial Support WHO would like to thank the following countries/agencies for supporting the development and production of iSupport: Alzheimer’s Association, U.S.A.; and, the Ministry of Health, Welfare and Sport, Netherlands. Neither of them are individually responsible in any way for the content, functioning of, or views displayed on iSupport. AC KN OW LE DG EM EN TS iS u p p o rt In te rv e n ti o n M an u al iii Being a carer for someone with dementia may affect one’s physical and mental health, well-being, and social relationships. Long- term care systems must account for the significant emotional, financial and social impact of caregiving on families and relatives, while addressing the needs of people with dementia. This includes providing carers with access to education, skills training, respite and social support through affordable, evidence-based resources. To address this need, the World Health Organization (WHO) has developed iSupport, an online skills training and support programme for carers of people with dementia. This iSupport manual allows carers who do not have access to the internet, or who prefer a manual, to benefit from the tool. The iSupport online programme and manual are currently being field-tested. It is our hope that the programme will be adapted by, and implemented in, many countries around the world. Dévora Kestel Director, Department of Mental Health and Substance Abuse Dementia is a major cause of impairement that affects a person’s memory, thinking and behaviour, and interferes with one’s ability to perform daily activities. It affects people worldwide, in particular older people. Globally, families provide the majority of care to people with dementia. The impact of dementia is significant to the individual who lives with dementia, their families, societies and countries, both in financial terms and human costs. The Global action plan on the public health response to dementia 2017-2025 represents an important step forward in achieving physical, mental and social wellbeing for people with dementia, their carers and families. It is an opportunity for individuals, communities and countries to realize the vision of a world in which dementia is prevented and people with dementia and their carers receive the care and support they need to fulfil their potential with dignity, respect, autonomy and equality. P R E FA C E PR EF AC E PREFACE iS u p p o rt In te rv e n ti o n M an u al iv What is included in the iSupport manual? The manual is organized into five modules (see Figure 1 page vi): (1) introduction to dementia; (2) being a carer; (3) caring for me; (4) providing everyday care; and (5) dealing with behaviour changes that might happen in people living with dementia. Module 1 provides an introduction to what dementia is, including what happens to people with dementia and what to do if you think that your family member or friend has dementia. Module 2 focuses on improving communication, shared decision-making and involving others in caring for the person living with dementia. Module 3 aims to reduce carer stress by making time for pleasant activities and thinking differently. Module 4 focuses on eating and drinking, including creating more pleasant mealtimes and preventing health problems, using the toilet and continence care, and personal care. Worldwide, carers of people with dementia should have access to information and support tailored to their needs in order to effectively respond to, and manage, the physical, mental and social demands associated with caring for someone living with dementia. iSupport has been developed to provide accessible, evidence-based training and information, tailored to carers’ needs. It aims to improve knowledge and caregiving skills, such as carers’ ability to cope with dementia symptoms and care for themselves. iSupport seeks to enable people with dementia to live in the community while preventing or reducing carer stress. The lessons included in this manual were carefully designed to help carers tackle the important challenges that they may face when caring for someone living with dementia. US ER G UI DE USER GUIDE iS u p p o rt In te rv e n ti o n M an u al v Finally, Module 5 provides an introduction to common changes in behaviour for people with dementia that might be distressing and upsetting for both the person with dementia and you as the carer. These symptoms include memory loss, aggression, depression and anxiety, difficulty sleeping, delusions and hallucinations, repetitive behaviour, walking and getting lost as well as poor or decreased judgement. Who is the target audience? This iSupport manual is primarily for carers of people with dementia, including family members and relatives, friends, and other carers. However, iSupport may also be of interest to others, for example: z nongovernmental organizations (NGOs) providing skills training, support and/or information to carers of people with dementia; z health and social care workers providing care and information to carers of people with dementia; and z private sector representatives involved in the development of health technologies for dementia, dementia health care service delivery or health care insurance. US ER G UI DE iSUPPORT Caring for me MODULE 3 Being a carer MODULE 2 Providing everyday care MODULE 4 Dealing with behaviour changes MODULE 5 What is dementia and how does it affect someone The journey together Reducing stress in everday life Eating and drinking: more pleasant mealtimes Introduction Delusions and hallucinations Repetitive behaviours Eating, drinking and preventing health problems Memory loss Walking and getting lost Toileting and continence care Aggression Changes in judgement Personal care Depression, anxiety and apathy Putting it all together An enjoyable day Difficulty sleeping Making time for pleasant activities Thinking differently Improving communication Supported decision-making Involving others Introduction to dementia MODULE 1 vi Figure 1 iS u p p o rt In te rv e n ti o n M an u al vii How to use this iSupport manual? iSupport has been developed as a self-help tool for carers of people living with dementia. Each module is divided into individual lessons (see Figure 1). All lessons are structured in the same way. At the beginning, there is an overview of why the lesson is important, how the lesson will help you as a carer and what you will learn. Each lesson then consists of a mixture of brief reading to provide new information, descriptive examples, multiple choice questions and activities to practice what you have learned. You may choose to work through the entire manual from beginning to end or select the lessons that are most relevant to your everyday life. You can also come back to individual lessons. How was iSupport developed? iSupport is grounded in WHO’s Mental Health Gap Action Programme (mhGAP) guidelines for carers of people with dementia. mhGAP aims to scale health and social care services for mental, neurological and substance use disorders for all countries, with a focus on low- and middle-income countries (LMICs). iSupport was developed based on evidence related to the feasibility and effectiveness of carer training and support interventions, both in person and online. Finally, the programme was developed in collaboration with international experts in the field of caregiving for people with dementia and internet-based interventions, and reflects the voices of carers of people with dementia. For more information on the development of iSupport see Pot et al (2019)1. US ER G UI DE 1 Pot AM, Gallagher-Thompson D, Xiao LD, Willemse BM, Rosier I, Mehta KM, Zandi D, Dua T. iSupport: a WHO global online intervention for informal carers of people with dementia. World Psychiatry. 2019. iS u p p o rt In te rv e n ti o n M an u al viii These exercises will help you feel calm and reduce stress. There is an entire lesson on relaxation activities included in Module 3. Relaxation activity Tip/Reminder/Keep in Mind Tips help you reflect on your learning or give practical reminders of how to apply what you have learned to your everyday life. Activity Here you will be asked to reflect upon how caregiving for a person with dementia is affecting your life or the life of the person with dementia. Example. How are you feeling right now? Please select all that apply. † Sad † Happy † Angry † Confused Check your understanding Here you will be asked a question about what you have learned. Answers are at the end of every lesson. Example: What color is the sky? † Green † Blue † Red † Orange US ER G UI DE Below is a guide to the individual exercises and activities that you will encounter throughout the manual. These exercises and activities allow for you to check your understanding and reflect on your learning in practical ways. iS u p p o rt In te rv e n ti o n M an u al ix Other uses of iSupport Although iSupport is primarily a self-help tool, we encourage a broader use. For example, iSupport might be supplemented by guidance from volunteers or health care workers to create more impact. The iSupport manual can also serve as a tool to structure educational or support group meetings for carers of people with dementia, or it may simply be used as a resource tool for participants of self-help groups. Finally, health care workers might find iSupport useful in assisting and supporting carers. Please note that both the iSupport online training programme and this manual are subject to ongoing rigorous field-testing and evaluation. More research is needed to evaluate the effectiveness of local adaptions and implementations. How to adapt iSupport? The iSupport manual represents a template that can be adapted to national or local contexts and needs. An adaptation and implementation guide is available to assist countries/communities in this process. WHO owns the copyright on iSupport. If you are interested in adapting and implementing iSupport, please contact WHO at whodementia@who.int to request a copyright license. This applies to both the iSupport manual and the online programme, accessible at www.iSupportForDementia.org. US ER G UI DE M od ul e 1 . I nt ro du ct io n to d em en tia M od ul e 1 . I nt ro du ct io n to d em en tia INTRODUCTION TO DEMENTIA 1 MODULE iS u p p o rt In te rv e n ti o n M an u al 2 Introduction to dementia Why is this lesson important? Dementia is a disease that can be overwhelming for the person with dementia, but also for you as a carer. There are many myths about dementia and learning more will help explain some common misunderstandings. How will this lesson help me? This lesson helps you to understand the basics of what dementia is and how it affects someone. This information is essential when you are a carer. What will I learn? 1. What is dementia? 2. What causes dementia? 3. What happens to people with dementia as the disease progresses? 4. What to do if you think that the person you care for has dementia? 5. How to reach out for help? 6. What is the focus of this manual? MODULE 1 In tro du ct io n to d em en tia iS u p p o rt In te rv e n ti o n M an u al 3 1. What is dementia? Dementia occurs as a result of a disease process that increasingly damages the brain over time. Dementia affects all groups of society and is not linked to social class, gender, ethnic group, or geographic location. Dementia is not a part of normal ageing. Although dementia is more common among older people, younger people can also be affected. 2. What causes dementia? Dementia is caused by a number of diseases which destroy nerve cells and damage the brain, as outlined below. Alzheimer’s disease Alzheimer’s disease is the most common cause of dementia. It destroys brain cells and nerves, disrupting the transmitters that carry messages in the brain, particularly those responsible for storing memories. Vascular dementia Vascular dementia occurs where blood vessels are damaged, the supply of oxygen to the brain fails and as a result, brain cells die. The symptoms of vascular dementia can occur either suddenly, following a stroke, or over time, through a series of small strokes. Vascular dementia accounts for 20%-30% of all cases of dementia. Dementia with Lewy bodies Dementia with Lewy bodies is similar to Alzheimer’s disease in that it is caused by deteriorating and dying nerve cells in the brain. It takes its name from abnormal deposits of protein - Lewy bodies - in the nerve cells of the brain. It may account for around 10% of all cases of dementia. Approximately, half the people with Lewy body disease also develop signs and symptoms of Parkinson’s disease. MODULE 1 In tro du ct io n to d em en tia iS u p p o rt In te rv e n ti o n M an u al 4 Fronto-temporal dementia In fronto-temporal dementia - including Pick’s disease - damage is usually concentrated in the front part of the brain. In the beginning, personality and behaviour are more affected than memory. Rarer causes of dementia There are many other rarer causes of dementia, such as alcohol-related dementia and dementia due to HIV/AIDS. 3. What happens to people with dementia as the disease progresses? Every person is unique and dementia affects people differently. No two people will develop the same difficulties in exactly the same way. It is not just the brain damage that determines how dementia affects someone, but also other factors including an individual’s personality, life course, general health and functioning, and living environment. MODULE 1 People with dementia often forget things or have trouble with their memory. Select the correct answer. „ TRUE „ FALSE 1. Check your understanding What happens to people with dementia? In tro du ct io n to d em en tia iS u p p o rt In te rv e n ti o n M an u al 5 Dementia symptoms can range from minor memory loss to severe difficulties in memory and thinking that make it impossible to manage daily activities without help. It can be helpful to view dementia as a series of stages to understand the illness. However, it is important to realize that this only provides a rough guide to the progress of dementia. Not all people with dementia will have all symptoms and some of the symptoms may only appear at one stage of the disease. In the early stage of the disease, people with dementia may have memory problems, become disoriented with respect to time, lost in familiar places and show difficulties making decisions. As dementia progresses to the middle stage, people with dementia may become very forgetful and in need of help with daily activities such as shopping, dressing, and washing. Dementia has stages In the late stage, people with dementia may not recognize relatives or friends anymore may display changes in behaviour that can be upsetting and distressing to the person with dementia and those around them. MODULE 1 In tro du ct io n to d em en tia iS u p p o rt In te rv e n ti o n M an u al 6 Here are some common things that may happen to people with dementia. Do you think that your family member/friend/the person that you care for experiences any of the following? Please select all that apply. 1. Activity Does the person you care for… Have trouble remembering things that happened minutes before? Find it difficult to perform daily activities? Struggle to identify time or place? Communicate differently than they did before? Misplace things? Withdraw socially? Show changes in feelings or personality? „ Yes „ No „ Yes „ No „ Yes „ No „ Yes „ No „ Yes „ No „ Yes „ No „ Yes „ No zz Forgetting recent events zz Repeating questions zz Money management zz Shopping zz Preparing dinner zz Forgetting the date and time of appointments zz Difficulty expressing oneself zz Difficulty finding the right words zz Not finding common objects, such as keys zz Suspecting things are stolen zz Showing decline in social activity zz Lacking urge to do something zz Having a lot of ups and downs zz Becoming more anxious than before Examples MODULE 1 In tro du ct io n to d em en tia iS u p p o rt In te rv e n ti o n M an u al 7 4. What to do if you think that the person you care for has dementia? If you think that a family member or friend may have dementia, a good first step is to make sure that they see a medical doctor. The doctor will examine their body and brain functioning. One important point to rule out is whether the person’s memory problems are caused by other treatable conditions such as depression, urinary tract infection, medication side effects, lack of vitamins or a brain tumor. It is important to identify whether the person’s memory problems are really part of dementia or are part of something else. Only a medical doctor can do this, not this manual. What is the first step if you think that a family member or friend has dementia? Please put a check mark () in front of the answers that you think are correct and a cross () in front of those that are wrong. „ Call a friend or relative. „ Use iSupport alone for help. „ Call a medical doctor’s office and make an appointment. „ The person has been to a medical doctor already and has been diagnosed with dementia. First steps MODULE 1 2. Check your understanding What to do if you think that the person you care for has dementia? In tro du ct io n to d em en tia iS u p p o rt In te rv e n ti o n M an u al 8 5. How to reach out for help? It is important to realize that you, alone, are not going to be able to provide all the care that the person living with dementia needs, especially not as things get more complex over time. So, we encourage you to reach out to family members, friends, and professional organizations or services for help. In many countries there are several resources that are very helpful. Some are free while others are not. Please contact your local Alzheimer’s Association for information, support and care that is available in your area and could benefit the person you care for as well as yourself. 6. What is the focus of this manual? The focus is on you, a carer of someone with dementia. Dementia can be overwhelming. For this reason, iSupport provides you with support to cope with caregiving on a day- to-day basis. It is really important that you not only take care of the person living with dementia but also take care of yourself. iSupport will show you how. It will also show you some common scenarios that might happen with people with dementia so that you are aware and can practice how to respond to such situations. Keep in Mind z Dementia affects a person’s brain. z Dementia is common, especially in older people. z Dementia is a disease, not a part of ageing. z As a first step it is important to see a medical doctor, if possible. z It is important for you to take care of yourself, not only the person you care for. z iSupport can support you as a carer. MODULE 1 In tro du ct io n to d em en tia iS u p p o rt In te rv e n ti o n M an u al 9 MODULE 1 In tro du ct io n to d em en tia You finished this lesson, well done! iS u p p o rt In te rv e n ti o n M an u al 10 People with dementia often forget things or have trouble with their memory. 9 True: This is the correct answer. 8 False: This is the incorrect answer. The right answer is that people with dementia often forget things or have trouble with their memory. What is the first step if you think that the person you care for has dementia? 8 ✗Call a friend or relative While friends and family can offer support, this cannot replace a medical exam given by a certified medical doctor. 8 Use iSupport alone for help While this manual provides information and support, it cannot replace a medical exam given by a certified medical doctor. 9 Call a medical doctor’s office and make an appointment This is the best first step if you have not done so already. 9 The person has been to a medical doctor already and has been diagnosed with dementia You have already completed the first important step. MODULE 1 1. Check your understanding What happens to people with dementia? 2. Check your understanding What to do if you think that the person you care for has dementia? ANSWERS - INTRODUCTION TO DEMENTIA AN SW ER S - IN TR OD UC TI ON TO D EM EN TI A M od ul e 2 . B ein g a c ar eg ive r BEING A CARER Lesson 1. The journey together Lesson 2. Improving communication Lesson 3. Supported decision-making Lesson 4. Involving others 2 MODULE iS u p p o rt In te rv e n ti o n M an u al 12 1. How may your roles change over time? You may feel as if your role is changing. In the early stages of dementia, you may still be able to enjoy many different activities together. As dementia progresses, the person will have more difficulty with everyday tasks. This will require a carer to do more to help with everyday life, such as giving medications and taking the person with dementia to appointments. In the middle and later stages of dementia, a carer might need to do even more for the person with dementia. This may include personal care, such as bathing, going to the toilet and dressing. Some tasks may be challenging for carers and cause stress. Why is this lesson important? Dealing with dementia is a journey you will take together, because it changes the daily life of both the person living with dementia and the carer. How will this lesson help me? This lesson teaches you skills for your journey together: to stay connected, involve others, take care of yourself, and plan for the future. What will I learn? 1. How may your roles change over time? 2. How to stay connected with the person you care for? 3. How to plan pleasant activities and relaxation? 4. How to involve others? 5. How to plan well for the future? Lesson 1. The journey together MODULE 2 Le ss on 1 . T he jo ur ne y t og et he r iS u p p o rt In te rv e n ti o n M an u al 13 Olivia has dementia and lives with her husband Jacob. During the past few months, Olivia’s memory loss seems to be more frequent. The last few times Olivia went shopping, she could not remember what to buy. She came home with the wrong things, which was frustrating. Let's look at an example How should Jacob approach Olivia about what happened? Check all the responses you feel are appropriate. „ Leave Olivia alone and see what happens. „ Ask Olivia to ‘work harder’ to remember things. „ Do not let Olivia shop anymore. „ Ask Olivia how she feels about her memory loss. „ Do not blame Olivia, but make a shopping list together with her each time prior to shopping. 1. Check your understanding Frustration about memory loss. MODULE 2 Le ss on 1 . T he jo ur ne y t og et he r iS u p p o rt In te rv e n ti o n M an u al 14 2. How to stay connected with the person with dementia? Here are some small tips to help you communicate better with someone living with dementia: z use simple sentences; z try to stay in control of your feelings; z create time for yourself and for each other. For more tips on how to improve communication with the person living with dementia, including in the later stages of the disease, read Lesson 2. Improving communication in this module. Tip MODULE 2 Le ss on 1 . T he jo ur ne y t og et he r It is important to keep talking together. The sooner you start talking about dementia and its effects on you and the person you care for, the better. Dementia will make doing this more difficult as time goes by. Talk about the changes happening now and what might happen in the future. Stay connected with each other and discuss the changes that may occur over time. It is important to keep talking together. iS u p p o rt In te rv e n ti o n M an u al 15 Providing care may become increasingly time consuming as the disease progresses. Sometimes carers do not take enough time for themselves. It is really important to try and take care of yourself as best as you can, as some carers may break down from the stress. Part of the journey together should include planning pleasant activities and relaxation for yourself. For more tips on how to relax, read Lesson 1. Reducing stress in everyday life in Module 3. For more tips on how to stay in control of your feelings read Lesson 3. Thinking differently in Module 3. For more tips on how to plan pleasant activities for yourself, read Lesson 2. Making time for pleasant activities in Module 3. 3. How to plan pleasant activities and relaxation? MODULE 2 Le ss on 1 . T he jo ur ne y t og et he r Taking care of yourself is important. iS u p p o rt In te rv e n ti o n M an u al 16 Caregiving can sometimes challenge friendships and relationships. It is common for people providing care to feel that no one understands what they are going through. Talking about your thoughts and feelings with others might help make you feel better. 4. How to involve others? Caring for someone with dementia does not have to be a lonely experience. Let friends and family members know when you could use a break. Caring for a loved one with dementia is sometimes too big a job for one person. Molly’s mother-in-law, Jess, has dementia. Molly has a big deadline at work and needs to leave at 7:30 the next morning. The paid in-home helper is not able to arrive until 9:00 in the morning. This leaves Jess alone for over an hour. Molly wonders whether it would be okay to leave Jess alone and feels stressed because she is not sure what to do. How could Molly deal with the situation? Check all of the responses that you feel are appropriate. „ Leave Jess alone and see what happens. „ Ask a neighbour to come visit Jess until the paid in- home helper arrives. „ Ask Jess to ‘take care of herself’. „ Ask her husband to go into work late so he can be with Jess until the paid in-home helper arrives. „ Ask the paid in-home helper to come in early. 2. Check your understanding Feeling stressed due to conflicting duties. MODULE 2 Le ss on 1 . T he jo ur ne y t og et he r iS u p p o rt In te rv e n ti o n M an u al 17 5. How to plan well for the future? Preparing for the future is a topic that will need to be discussed. You will need to make decisions with the person you care for about preferences for who might provide care, planning for the costs of future care needs, and preferences in case of more advanced care needs and end of life decisions. Many people providing care, like you, worry about the future. The earlier you plan for the future, the better and easier it will be for you. Planning early will also ensure that the person you care for will be better able to say what their wishes are. Where possible, discuss topics that concern you. Here are some common questions that carers have. You may want to discuss these with the person you care for. Write down the responses to the questions. What are the person’s preferences when they are no longer able to bathe themselves? For example, would they prefer a male or female to help bathe them? How do they feel about having a close family member bathe them or would they prefer a qualified professional who is unrelated? What does the person you care for want to do themselves for as long as possible? MODULE 2 Le ss on 1 . T he jo ur ne y t og et he r 1. Activity iS u p p o rt In te rv e n ti o n M an u al 18 MODULE 2 Le ss on 1 . T he jo ur ne y t og et he r 1. Activity What are their wishes at the end of life? If you find it helpful, please write down the questions that you might want to discuss in the space below. If more assistance is needed at home, what kind of help would the person you care for prefer now and/or in the future? iS u p p o rt In te rv e n ti o n M an u al 19 What are some ways that Jacob and Olivia can maintain their intimacy as Olivia’s dementia progresses? Think about it before reading on. MODULE 2 Le ss on 1 . T he jo ur ne y t og et he r 2. Activity Let’s revisit the scenario with Olivia and Jacob Intimate relationships may change As you progress through the journey together, partners may experience some changes in their intimate relationship. At first, sexual relationships between partners may still be possible. As the disease progresses, sexual relationships and physical intimacy may become more difficult. Olivia is in the early stages of dementia and lives with her husband Jacob. Olivia and Jacob have a healthy, mutually satisfying physical relationship, but Jacob is worried about the day when these relations may stop. iS u p p o rt In te rv e n ti o n M an u al 20 Ways to stay connected z Use touch, hold hands or do a gentle massage to communicate warmth, connection, safety and love. z Use music – it is truly a universal language. Play music that the person you care for likes and that makes them feel good. z Try to maintain your sense of humour. This will help reduce frustration and tension. z Talk with them about what they like and need – it’s an important conversation to have more than once, as things change over time. z It is okay to take a break. z It is okay to ask for help. z It is okay to feel frustrated sometimes. z It is okay to feel lonely sometimes if you feel that the person you care for is no longer able to meaningfully communicate with you. Taking care of yourself One of the most important things to remember as roles change is that you, as someone providing care for a person with dementia, need to care for yourself too. Throughout this manual we will teach you ways to do this. Here are some tips for partners on how to maintain intimacy, even when sexual relations may no longer be possible with the person living with dementia. MODULE 2 Le ss on 1 . T he jo ur ne y t og et he r Tip Reminder iS u p p o rt In te rv e n ti o n M an u al 21 z As your role changes, it is important to stay connected during your journey together. z Make sure that you plan pleasant activities and relaxation so that your role does not become overwhelming. z Ask for help because providing care to someone with dementia can be tiring. z Make sure that you plan well for the future. z There are many different ways to maintain intimacy and stay connected. Let’s review what you have learned For more tips on how to relax, read Lesson 1. Reducing stress in everyday life in Module 3. MODULE 2 Le ss on 1 . T he jo ur ne y t og et he r You finished this lesson, well done! iS u p p o rt In te rv e n ti o n M an u al 22 9 Ask Olivia how she feels about her memory loss This is a good response because Jacob is addressing the issue by discussing its impact on Olivia and staying ‘connected’. Jacob could also share his own worries about he memory loss. 9 Do not blame Olivia, but make a shopping list together with her each time prior to shopping. This is a very good response, because this will help Olivia to continue shopping and maintain her independence as long as possible. How should Jacob approach Olivia about what happened? 8 Leave Olivia alone and see what happens This is not a helpful response, because Olivia and Jacob both feel frustrated. To stay connected it is important to talk about their frustration and worries about the future. 8 Ask Olivia to ‘work harder’ to remember things This is not a good response, because memory loss is part of living with dementia, it is unlikely to change. 8 Do not let Olivia shop anymore. This is not a good response because doing the shopping is important to Olivia. Shopping may give Olivia purpose in life and a feeling of dignity. ANSWERS - BEING A CARER Lesson 1. The journey together MODULE 2 1. Check your understanding Frustration about memory loss. AN SW ER S - B EI NG A C AR ER • Le ss on 1 iS u p p o rt In te rv e n ti o n M an u al 23 How could Molly deal with the situation? 9 Ask a neighbour to come visit Jess until the paid in- home helper arrives. This is helpful because it ensures Jess’ safety. Molly can do her work and also gets a short break from caregiving. 9 Ask her husband to go into work late so that he can be with Jess until the paid in-home helper arrives. This is a good response. It shows that Molly is trying to involve her family members for support and gives her the break that she needs. 9 Ask the paid-in home helper to come in early. This is a good response but it may not be possible because of the short notice. 8 Leave Jess alone and see what happens. This is not a good response, because it potentially puts Jess in danger and Molly will not be able to perform well at work with the added stress of leaving Jess. 8 Ask Jess to ‘take care of herself’. This is not a good response because her dependence on others is part of living with dementia and unlikely to change. MODULE 2 2. Check your understanding Feeling stressed due to conflicting duties. AN SW ER S - B EI NG A C AR ER • Le ss on 1 iS u p p o rt In te rv e n ti o n M an u al 24 Why is this lesson important? Dementia can often make communication difficult. How will this lesson help me? This lesson helps you to talk in a simple and direct way and show your compassion in everyday situations. What will I learn? 1. How to improve communication? 2. How to check the person’s ability to hear and see? 3. How to get attention in a respectful way? 4. How to keep it simple? 5. How to take the person seriously? 6. How to pay attention to reactions? 7. How to give compliments? 8. How to show compassion? 1. How to improve communication? In this lesson you will learn about tools and tips for good communication. Dementia can often make communication difficult. This can have an impact on your relationship with the person you care for. It can even make them or you frustrated, sad or angry. When you communicate with the person you care for, for example by talking to them or giving them a hug, make sure that they understand what you mean by your action and that you understand them too. Lesson 2. Improving communication MODULE 2 Le ss on 2 . I m pr ov in g co m m un ica tio n iS u p p o rt In te rv e n ti o n M an u al 25 For all communication - talking, touching or gestures – the basics, like the ability to see and hear, are important. Unfortunately, dementia may impair someone’s ability to hear and see. Therefore, it is important that you check whether the person's hearing and sight could be improved by making changes in their environment or arranging for any relevant medical check-ups. 2. How to check the person’s ability to hear and see?Show compassion by listening, take the person you care for seriously, treat them with respect and dignity, show interest, or give them a smile or a hug. This is very important for every human being, including people with dementia. In this lesson we help you to show compassion. Some important basic skills for communication will be explained. MODULE 2 Le ss on 2 . I m pr ov in g co m m un ica tio n Imagine for a moment that you are living with dementia. What would you like other people to do? Please select all that apply. „ Listen to how you feel. „ Talk behind your back. „ Give you a smile. „ Say that they do not care. „ Tell you that they love you. „ Treat you like a child. „ Approach you with respect and dignity. 1. Check your understanding Imagine that you are living with dementia. iS u p p o rt In te rv e n ti o n M an u al 26 Exercise to improve sight The ability to see is important for communication. Check the items below to help improve sight. In general, people with dementia need more light to see clearly. Increase light levels and use daylight where possible. It will help the person living with dementia to see well. You may also think of leaving lights on at night so the person can find the bathroom. Dementia can make it hard to see contrasts. For example, if there is a white plate on a white table, people with dementia may have difficulty seeing the plate. A coloured plate or tablecloth may help. Does the person living with dementia lose or misplace their glasses frequently? Encourage them to always put the glasses in the same spot to reduce frustration over having to look for them. Sometimes a neck cord is also helpful in that case. If the person living with dementia wears glasses, check whether they are clean and still comfortable to wear. Are the glasses comfortable around the ears and nose? If the person living with dementia does not have glasses, but cannot see well anymore, consult a doctor. If the person living with dementia wears glasses, check to see if the prescription is still accurate, or consult a doctor. Is there enough light? „ Yes „ No „ Yes „ No „ Yes „ No „ Yes „ No „ Yes „ No Is there enough contrast in colours? Is the person living with dementia wearing their glasses? Are the glasses still okay? Do you need to consult a doctor? Tips 1. Activity MODULE 2 Le ss on 2 . I m pr ov in g co m m un ica tio n iS u p p o rt In te rv e n ti o n M an u al 27 Exercise to help improve hearing The ability to hear is important for communication. Check the items below to help improve hearing. Minimizing background noise will help to improve hearing. Perhaps take the person living with dementia to a quieter location with fewer distractions. Turn off the television or radio when trying to communicate with them. The person living with dementia may forget to wear the hearing aid or require help or assistance with putting it in properly. If the person living with dementia is wearing a hearing aid, check whether it is clean, fits snugly in the ear canal, is still comfortable to wear and the batteries are charged. If the person living with dementia wears a hearing aid, check if the prescription is still accurate, or whether you need to consult a doctor. If the person living with dementia does not have a hearing aid, but cannot hear well anymore, you should also consult a doctor. Is there too much noise? Is the hearing aid still okay? Do you need to consult a doctor? If the person living with dementia has a hearing aid, is he/she wearing it? Tips MODULE 2 Le ss on 2 . I m pr ov in g co m m un ica tio n 2. Activity „ Yes „ No „ Yes „ No „ Yes „ No „ Yes „ No iS u p p o rt In te rv e n ti o n M an u al 28 3. How to get attention in a respectful way? The person living with dementia is a person with feelings, no matter how serious the disease is or how advanced communication problems are. Therefore, an important first step is to make contact with the person you care for by catching their attention. Below are some suggestions regarding how to capture the attention of a person living with dementia. Please put a check mark () in front of the answers that you think are correct and a cross () in front of those that are wrong. „ Raise your voice or shout. „ Speak clearly and slowly, at a volume that is comfortable for the person, face to face and at eye level. „ Tap a hand, arm or front of the shoulder. „ Stop and hold the person to make him or her listen. „ Approach the person from the back and touch their shoulder. „ Call the person living with dementia by a name that they recognize. MODULE 2 Le ss on 2 . I m pr ov in g co m m un ica tio n 2. Check your understanding Get attention in a respectful way. z Gaining attention is a first important step for good communication. z There are different ways to gain the attention of a person living with dementia in a respectful manner. Remember iS u p p o rt In te rv e n ti o n M an u al 29 Jonathan takes care of his father who has dementia. Jonathan notices that his father does not understand him. Can you tell why? Check the items in the list below that you think could impair communication between Jonathan and his father. „ The radio is on. „ Jonathan is making a phone call. „ Jonathan asks multiple questions at the same time. z Ask or tell the person living with dementia one thing at a time. z Use simple language and keep sentences short. Avoid long and complicated sentences, focus on one subject at a time. z When needed, change from open-ended to closed-ended questions that can be answered with YES or NO. z Make sure there are no distracting background noises such as a television or radio. Often the language we use to get a message across is too complicated. Keeping it simple will help the person you care for understand you better. 4. How to keep it simple? MODULE 2 Le ss on 2 . I m pr ov in g co m m un ica tio n Keep in Mind 3. Check your understanding Keep it simple. iS u p p o rt In te rv e n ti o n M an u al 30 At some point, you may not understand what the person you care for means. The language they use may even seem strange or funny. However, it is important that you take them seriously. The person you care for is trying to tell you something, even though their communication skills may be impaired due to the dementia. 5. How to take the person seriously? MODULE 2 Le ss on 2 . I m pr ov in g co m m un ica tio n It is important that you take the person you care for seriously. iS u p p o rt In te rv e n ti o n M an u al 31 John is visiting his father who has dementia. When his father wants to describe his morning to John, he cannot find the right words. John says to his wife in front of his father: “I have no clue what he means!” His wife answers: “Yes, I don’t know either. He is just like a child!” Let's look at an exampleMODULE 2 Le ss on 2 . I m pr ov in g co m m un ica tio n Which of the following statements do you think is correct? Check all the responses that you feel are appropriate. „ John should not talk about his father when he is in same the room. John could have said: “It is difficult to understand what you mean.” In addition, he could have asked some questions that his father could have answered with ‘YES’ or ‘NO’. For example: “Have you gone outside this morning?” „ John and his wife could be more patient. „ John and his wife could ask John’s father if it is okay when they try to guess what he wants to say. „ It is important that John and his wife talk about the difficulty to understand John’s father in front of him. „ His wife is right: a person living with dementia is just like a child. 4. Check your understanding Take the person seriously. z It is important to take the person that you are caring for seriously and treat them with respect and dignity. z Do not talk about them in their presence. z Be patient and give them time to find the right words. z When the person you care for is difficult to understand, it may help to ask closed- ended questions that can be answered with YES or NO to understand what they mean. Remember iS u p p o rt In te rv e n ti o n M an u al 32 Take a look at the cartoons below. Do you understand these feelings? Select the right answer for each cartoon. You can tell a lot from the way someone speaks and looks. For example, if someone is smiling, you can assume that this person is in a good mood. Keeping this in mind will help you communicate with the person you care for. 6. How to pay attention to reactions? Happy Angry Sad Scared Happy Angry Sad Scared Happy Angry Sad Scared Happy Angry Sad Scared z Facial expressions and body language tell us how a person is feeling. Other examples of body language include fidgeting, having arms crossed or pacing. These can give us messages about how the person may be feeling. For example whether the person may be nervous, upset or anxious. z Take notice of the responses and body language of the person you care for. MODULE 2 Le ss on 2 . I m pr ov in g co m m un ica tio n 5. Check your understanding Pay attention to reactions. Keep in Mind iS u p p o rt In te rv e n ti o n M an u al 33 7. How to give compliments? Complimenting the person you care for is important. In general, it is much more effective to say what someone is doing well, than to say what they are doing wrong. A compliment can range from commenting that someone has done something well to saying that they look nice. You can give compliments in different ways and in different situations. Here is a list of statements. These statements include several compliments. However, there are also some statements that are not compliments. Please put a check mark () in front of the statements that are compliments and a cross () in front of those that are not. „ You look beautiful. „ You are good at ... „ What are you doing?! Stop it! „ You are very helpful. Thank you. „ You are making a mess. „ You should be ashamed of forgetting everything. „ I love having you around. „ You are driving me crazy. „ You have a great smile. Statements MODULE 2 z The person you care for will feel good if you say something positive. z Compliments can be given in many different ways. z Saying something negative will make a person feel bad. Keep in Mind 6. Check your understanding Give compliments. Le ss on 2 . I m pr ov in g co m m un ica tio n iS u p p o rt In te rv e n ti o n M an u al 34 Think about all the things that you like about the person you care for. Now try to write down something you would say to give them a compliment. MODULE 2 3. Activity Le ss on 2 . I m pr ov in g co m m un ica tio n iS u p p o rt In te rv e n ti o n M an u al 35 It is important that you show compassion, even if a person living with dementia is repeating the same questions over and over again, or understanding each other becomes increasingly difficult. You need to remember that dementia is a disease that can make communication difficult. For example, a person living with dementia may have forgotten what they just said. You need to use extra effort and be patient with the person you care for. 8. How to show compassion? MODULE 2 Le ss on 2 . I m pr ov in g co m m un ica tio n William often visits his sister, Elena, who lives with dementia. Elena’s husband passed away six months ago. When William is visiting, Elena often asks where her husband is. William finds this difficult. He knows Elena is missing her husband and may have forgotten that he died. William tries to distract her by asking questions about other things, such as: ”How was your day?” Elena persists in asking where her husband is. Today William tries a different approach William says to Elena: “It must be difficult for you that he died”. He gives Elena a hug. William shows Elena some pictures of her husband that he brought from home and talks to her about her husband. William showed that he understands that Elena is missing her husband and tries to support her. Let's look at an example Did William respond well? Please select the correct answer below. „ YES „ NO Did William respond well? Please select the correct answer below. „ YES „ NO 7. Check your understanding How to show compassion (1). 8. Check your understanding How to show compassion (2). iS u p p o rt In te rv e n ti o n M an u al 36 Keep in mind that people with dementia also have the right to grieve the loss of a loved one in a safe and supportive setting. The example of William and his sister, Elena, shows that: z You can show compassion in different ways. z It is important to take a person living with dementia seriously and to pay attention to the questions they have. z Showing compassion helps to improve your relationship with the person you care for. You have practiced the following communication skills: z check ability to hear and see; z get attention in a respectful way; z keep it simple; z take the person seriously; z pay attention to reactions; z give compliments; z show compassion. Let’s review what you have learned MODULE 2 Le ss on 2 . I m pr ov in g co m m un ica tio n You finished this lesson, well done! iS u p p o rt In te rv e n ti o n M an u al 37 MODULE 2 ANSWERS - BEING A CARER Lesson 2. Improving communications What would you like other people to do? 9 Listen to how you feel 8 Talk behind your back 9 Smile at you 8 Say that they do not care 9 Tell you that they love you 8 Treat you like a child 9 Approach you with respect and dignity 1. Check your understanding Imagine that you are living with dementia. AN SW ER S - B EI NG A C AR ER • Le ss on 2 iS u p p o rt In te rv e n ti o n M an u al 38 MODULE 2 8 ✗Stop and hold the person to make them listen. This is not a respectful way to get attention. It may even make the person living with dementia feel distressed or angry. 8 Approach from the back and touch the person’s shoulder. This may startle someone who is not expecting you or perhaps did not hear you coming. 9 Call the person living with dementia by a name that he or she recognizes. This is a good way to attract the attention of a person living with dementia. You might use their first name or a nickname that was used in the past. Below are some suggested ways to get the attention of a person living with dementia. What are the right and wrong answers? ✗ 8 Raise your voice or shout. Raising your voice is not a respectful way to gain attention. It may even make the person living with dementia feel sad, frustrated or angry. 9 Speak clearly, slowly, at a volume that is comfortable for the person, face to face and at eye level. This is an appropriate way to make contact. It shows that you are seeking contact in a respectful manner. 9 Tap a hand, arm or front of the shoulder. This is a good way to attract the attention of a person living with dementia. 2. Check your understanding Get attention in a respectful way. AN SW ER S - B EI NG A C AR ER • Le ss on 2 iS u p p o rt In te rv e n ti o n M an u al 39 Jonathan takes care of his father who has dementia. Jonathan notices that his father does not understand him. Can you tell why? 9 The radio is on. Very good! A radio can be very distracting. It makes it difficult to follow what someone else is saying, especially for people with dementia who can have difficulty concentrating. 9 Jonathan is making a phone call. Very good! Making a phone call does not show interest and will confuse his father. It’s important for people with dementia to try and stay focused on one task. It will be difficult to get back on the same subject after making a phone call. 9 Jonathan asks multiple questions at the same time. Correct! Asking too many questions at the same time makes it difficult for his father to understand. MODULE 2 3. Check your understanding Keep it simple. AN SW ER S - B EI NG A C AR ER • Le ss on 2 Which of the following statements do you think is correct? 9 John should not talk about his father when his father is in same the room. He could have said, “It is difficult to understand what you mean.” In addition, he could have asked some questions that his father could have answered with ‘YES’ or ‘NO’. For example: “have you gone outside this morning?” Correct! John takes his father seriously when trying to understand what he wants to say. Do not talk about the person you care for while they are in the same room. 9 John and his wife could be more patient. Correct! It takes people with dementia longer to find the right words and they need time and patience to be understood. 9 John and his wife could ask John’s father if it is okay when they try to guess what he wants to say. This is a correct answer because some people with dementia appreciate help with finding the right words or fill in sentences. 4. Check your understanding Pay attention to reactions. iS u p p o rt In te rv e n ti o n M an u al 40 MODULE 2 AN SW ER S - B EI NG A C AR ER • Le ss on 2 Take a look at the cartoons below. Do you understand this feeling? Select the right answer below. Happy 9 Angry Sad Scared 9 Happy Angry Sad Scared Happy Angry 9 Sad Scared Happy Angry Sad 9 Scared 5. Check your understanding Pay attention to reactions. 9 You look beautiful. 9 You are good at … 8 What are you doing?! Stop it! 9 You are very helpful. Thank you. 8 You are making a mess. 8 You should be ashamed of forgetting everything. 9 I love having you around. 8 You are driving me crazy. 9 You have a great smile. 6. Check your understanding Give compliments. iS u p p o rt In te rv e n ti o n M an u al 41 Did William respond well in the first example? 8 No Will wants to distract his sister’s attention because he knows she is missing her husband and will be sad to be reminded that he died. Although Will has the best intentions, ignoring her questions is not the right way to respond especially because his sister persists in asking. Did William respond well in the second example? 9 ✓Yes It is important to try different responses to identify the one which will cause the less distress. Initially William tried to distract his sister with no success. Today, by showing his sister pictures of her husband, they had a good conversation about him. MODULE 2 7. Check your understanding How to show compassion (1). 8. Check your understanding How to show compassion (2). AN SW ER S - B EI NG A C AR ER • Le ss on 2 iS u p p o rt In te rv e n ti o n M an u al 42 Why is this lesson important? Making decisions can become more difficult for a person living with dementia over time. How will this lesson help me? By practicing how to support a person living with dementia to make their own decisions for as long as possible or to assist in making decisions in the person’s best interest. What will I learn? 1. Why is support in decision-making needed? 2. How to make decisions in someone’s best interest? 3. How to support someone with dementia to make everyday decisions? 4. How to support someone with dementia to make everyday decisions as the dementia progresses? 5. How to support someone with dementia in making complex decisions? 1. Why is support in decision-making needed? Supporting someone with dementia to make their own decisions is very important. Like everyone else, people living with dementia have the right to participate in all decisions that affect their lives and wellbeing. However, making decisions may become difficult due to the progression of dementia. Sometimes this results in relatives taking over decision- making, instead of supporting people with dementia to make their own decisions. In this lesson, you will learn how you can support the person you care for when they need to make a decision. Lesson 3. Supported decision-making MODULE 2 Le ss on 3 . S up po rte d de cis io n- m ak in g iS u p p o rt In te rv e n ti o n M an u al 43 z Memory loss Having memory loss will cause someone with dementia to sometimes forget the information that is needed to make a decision. z Problems with thinking or difficulties identifying and describing what someone with dementia thinks When a person living with dementia has problems thinking or describing what they are thinking, it might be more difficult for them to make a decision and share it with you. z Problems with making complex decisions Complex decisions, such as deciding whether or not to go outside alone, can be more challenging, therefore support is important. MODULE 2 Le ss on 3 . S up po rte d de cis io n- m ak in g Everybody needs to make decisions, whether they are big or small. Because the person you care for has dementia, your support is needed to help them clarify what they want. Decisions in line with the interests, needs and wishes of the person you care for will make them more independent. Decision-making can be difficult Why do you think decision-making can be difficult for a person living with dementia? Have a look at the reasons below to find out more. 2. How to make decisions in someone's best interest? iS u p p o rt In te rv e n ti o n M an u al 44 MODULE 2 1. Activity Le ss on 3 . S up po rte d de cis io n- m ak in g Do you support the person you care for to make decisions? You may want to write down the ways that you support their decision-making: Think about your own situation z Making decisions will become more difficult as the dementia progresses. z Your support for the person you care for to make their own decisions is needed. z Enabling them to make their own decisions might not be easy because of their dementia. iS u p p o rt In te rv e n ti o n M an u al 45 It is important to encourage the person you care for to do whatever they are still able to do. Supporting them in making decisions will help them to be more independent. Supporting them in making decisions might also improve their self-esteem. Manuel has Alzheimer's disease and is married to Maria. Manuel always used to lay out his clothes for the next day in the evening. Now he has dementia, he forgets to do so and sometimes wears the same clothes everyday. Let's look at an example 3. How to support someone with dementia to make everyday decisions? MODULE 2 Le ss on 3 . S up po rte d de cis io n- m ak in g z It is important to encourage the person that you care for they continue doing whatever they are still able to do. z Supporting the person you care for in making decisions will help them be more independent. z Support the person you care for in making decisions may add to their self-esteem. Keep in Mind1. Check your understanding Support for making everyday decisions. What do you think is the best way to make sure that Manuel wears clean clothes, without taking over his decisions at the same time? „ Before Maria and Manuel go to bed, Maria asks Manuel what he wants to wear the next day. She then asks Manuel to lay them out. „ Maria chooses clothes for Manuel and she asks him to lay them out. „ Maria chooses clothes for Manuel in the morning and gives them directly to Manuel to wear. iS u p p o rt In te rv e n ti o n M an u al 46 4. How to support someone with dementia to make everyday decisions as the dementia progresses? Let's look at an example After some time, Manuel feels stressed when choosing his clothes for the next day with Maria. He starts to worry about everything else he needs to do the next day and becomes anxious. This makes it difficult for Maria to support Manuel in making his decision. MODULE 2 Le ss on 3 . S up po rte d de cis io n- m ak in g z Supporting someone with dementia in making their own choices is possible, even as dementia progresses. z It may help to simplify decisions by limiting the number of choices or discuss the situation at a better time when the person is in a better mood or less worried. Remember What should Maria do? Please check all the responses that you feel are appropriate. „ Instead of supporting Manuel to choose his clothes the evening before, she asks him in the morning, at the beginning of the day. „ Maria lays out Manuel’s clothes in the evening. „ When Maria asks Manuel what he wants to wear she can give him only a few choices and, for example, ask him whether he wants to wear his blue or black trousers. 2. Check your understanding Support for making decisions as the dementia progresses. iS u p p o rt In te rv e n ti o n M an u al 47 5. How to support someone with dementia to make complex decisions? There comes a time in the course of dementia when someone may not be able to make complex decisions anymore, such as decisions concerning medical treatment. MODULE 2 Le ss on 3 . S up po rte d de cis io n- m ak in g What should the doctor and Chrissy do? Multiple answers are correct. „ Mary says what she wants, so she does not need support in making the decision whether or not to start with the medication. „ The doctor says that she should take the medication because it is good for her health. „ The doctor explains that taking the medication is good for her health, because it will slow down further damage in her brain because of her dementia. „ Her daughter says: "Mom, you know that you are forgetting things and that you have difficulties to find the right words when you want to say something. By taking the medication these problems may slow down a bit." 3. Check your understanding Support for making complex decisions (1). Let's look at an example Mary has vascular dementia and is taken care of by her daugther Chrissy. The doctor advises Mary to start using medication for her blood pressure. Mary says that she does not want to take pills because she does not understand why she needs them. iS u p p o rt In te rv e n ti o n M an u al 48 MODULE 2 Le ss on 3 . S up po rte d de cis io n- m ak in g What do you think are reasons that Jack can no longer make the decision himself? Please check all the responses that you feel are appropriate. „ Jack is unable to understand the information that is relevant to making the decision. „ Jack does not agree with the doctor. „ Jack is unable to communicate his decision (by talking, using body language or any other means). „ Jack is unable to use or weigh the information as part of the decision-making process. 4. Check your understanding Support for making complex decisions (2). Let's look at another example Jack who has dementia lives with his wife, Ella. Jack’s condition deteriorates. Ella decides to make an appointment with the doctor without Jack to discuss his medical condition and to make a decision regarding his medication. Ella discusses the issue with Jack’s sister as well, who asks her what she thinks Jack would have decided before he was diagnosed with dementia. Ella talks to the doctor and tries to imagine what Jack would have decided if given all the information. iS u p p o rt In te rv e n ti o n M an u al 49 The capacity to make a decision may be affected by the following considerations: z The type of decision being made. Someone with dementia might still be able to choose what kind of clothes to wear, but perhaps not whether to take medicines. z Change over time. Imagine that Jack had a severe infection that made him very confused. After this infection is cured, he might be able again to decide whether or not to take the medication. z Can be difficult to assess. Sometimes it is not clear, in which case there is no other alternative other than to help the person living with dementia make a decision that is in their best interest. MODULE 2 Le ss on 3 . S up po rte d de cis io n- m ak in g z Someone with dementia can be involved in making complex decisions, such as medical decisions, with the right support. z Support for making complex decisions should focus on providing correct information to help the person you care for understand what the consequences of the decision are. Remember iS u p p o rt In te rv e n ti o n M an u al 50 You can make decisions in the best interest of a person living with dementia by taking the following aspects into account. z Their past and present wishes and feelings (and, in particular, any relevant statement written when they did not have dementia). z Beliefs and values that may have influenced the person’s decision when he or she did not have dementia. z The views of anyone named by the person you care for as someone to be consulted to help with making decisions. z Be aware that the best interest of the person you care for is not always the same as your own best interest or that of other family members. In the end, it is the best interest of the person you care for that counts, since the decision concerns them. z Take into account that someone’s past wishes can be different from their present ones. Preparing for decisions To prepare for decisions that you might have to make for the person living with dementia it is important to: z Gather the information you need to make informed choices for the person as early in the course of the disease as possible. z Talk about decisions with your family, friends, doctor and any others close to you to help with decisions that are important to you both. z Prepare instructions that accurately reflect the wishes of the person living with dementia, in accordance with your country’s law (advance directives), and inform each other and your doctor about your preferences and decisions concerning medical treatment. MODULE 2 Le ss on 3 . S up po rte d de cis io n- m ak in g Remember iS u p p o rt In te rv e n ti o n M an u al 51 Think of the following choices when you prepare instructions that accurately reflect the wishes of the person you care for. MODULE 2 Le ss on 3 . S up po rte d de cis io n- m ak in g 2. Activity z Where does the person you care for prefer to live if it is no longer possible to stay at home? z What aspects of home/community/facility care are important to the person you care for? z Who does the person you care for want in charge of their finances when they are no longer capable of doing it? z How does the person you care for want to be treated at the end of their life? z Are there medical treatments that the person you care for wants to receive or refuse? z What does the person you care for want when eating is no longer possible? Would they want to get a feeding tube? z Does the person you care for have any particular fears or concerns about medical treatments? iS u p p o rt In te rv e n ti o n M an u al 52 You finished this lesson, well done! MODULE 2 Le ss on 3 . S up po rte d de cis io n- m ak in g iS u p p o rt In te rv e n ti o n M an u al 53 9 ✗Before Maria and Manuel go to bed, Maria asks Manuel what he wants to wear the next day. She then asks Manuel to lay them out. This is the right answer! This way Manuel is encouraged to do the things he is still able to do. 9 Maria chooses clothes for Manuel and she asks Manuel to lay them out. This answer is okay. It is good that Manuel is encouraged to lay out his clothes himself; however, it would have been better if Maria supported Manuel in making his own decision about what to wear. What do you think is the best way to make sure that Manuel wears clean clothes, without taking over his decisions at the same time? 8 Maria chooses clothes for Manuel in the morning and gives them directly to Manuel to wear. This is not a good option. Maria is taking control away from Manuel. It would be better if she supported him in making his own decision and encouraged him to do the things which he is still able to do, such as laying out the clothes. MODULE 2 ANSWERS - BEING A CARER Lesson 3. Supported decision-making 1. Check your understanding Support for making everyday decisions. AN SW ER S - B EI NG A C AR ER • Le ss on 3 iS u p p o rt In te rv e n ti o n M an u al 54 What should Maria do? 9 Instead of supporting Manuel in choosing what he wants to wear in the evening for the next day, she asks him in the morning at the beginning of the day. Correct! Maria still supports Manuel in deciding what he wants to wear, but he will not start to worry the evening before. 8 ✗Maria lays out Manuel’s clothes in the evening. This is not a good option. Maria is deciding for Manuel, while he still might be able to make his own decisions. 8 When Maria asks Manuel what he wants to wear in the evening she can give him only a few choices and, for example, ask him whether he wants to wear his blue or black trousers. In some cases this might be a good option. Even though Maria decides which trousers Manuel should wear the next day, Manuel can still make the final decision himself. However, in this case it might not be the best thing to do, because it might not solve the problem that Manuel will worry about the next day. MODULE 2 ANSWERS - BEING A CARER Lesson 3. Supported decision-making 2. Check your understanding Support for making decisions as the dementia progresses. AN SW ER S - B EI NG A C AR ER • Le ss on 3 iS u p p o rt In te rv e n ti o n M an u al 55 8 ✗Mary says what she wants, so she does not need support in making the decision whether or not to start the medication. This is not correct. Since Mary has dementia, we are not sure whether or not she understands why she needs the medication and what the consequences of taking or not taking the medication might be. 8 ✗✗The doctor says that she should take the medication because it is good for her health. Incorrect. Although it is true that the medication will be good for her health, the doctor is telling Mary what to do, which is not so good. What should the doctor and Chrissy do? Multiple answers are correct. 9 The doctor explains that taking the medication is good for her health because it will slow down damage to her brain resulting from her dementia. This is right! Her doctor’s explanation allows Mary to understand the importance of taking the medication and will enable her to make an informed decision. 9 Her daughter says: “Mom, you know that you are forgetting things and that you have difficulties to find the right words when you want to say something. By taking the medication these problems may slow down a bit.” Correct! Using different words to explain the possible reasons for taking the medication might help Mary understand why taking the medication would be beneficial for her. MODULE 2 ANSWERS - BEING A CARER Lesson 3. Supported decision-making 3. Check your understanding Support for making complex decisions (1). AN SW ER S - B EI NG A C AR ER • Le ss on 3 iS u p p o rt In te rv e n ti o n M an u al 56 9 ✗Jack is unable to understand the information relevant for the decision. 8 ✗Jack does not agree with the doctor. 9 ✗Jack is unable to communicate his decision (by talking, using body language or any other means). 9 ✗Jack is unable to use or weigh the information as part of the decision-making process. What do you think are the reasons that Jack can no longer make the decision himself? Multiple answers are correct. MODULE 2 ANSWERS - BEING A CARER Lesson 3. Supported decision-making 4. Check your understanding Support for making complex decisions (2). AN SW ER S - B EI NG A C AR ER • Le ss on 3 iS u p p o rt In te rv e n ti o n M an u al 57 1. The importance of involving family and friends It might be difficult to involve others caring for the person living with dementia. You could think that others will not be able to provide care as well as you can, that they do not have time or might say ‘no’ when asked for help. As time progresses, the person you care for will need more and more help with daily activities. Therefore, it is important to involve others so that the tasks can be shared. It can also be helpful to have someone to talk to who understands your situation and feelings. Do not wait too long, since help early on will allow you to continue providing care to your family member or acquaintance in the long term. Why is this lesson important? Sharing caregiving responsibilities with other people will help you to continue providing care in the long term. How will this lesson help me? By practicing the skill ‘asking for help’. What will I learn? 1. The importance of involving family and friends. 2. Types of help and support that you might need. 3. Effectively asking for help from others. MODULE 2 Le ss on 4 . I nv ol vin g ot he rs Lesson 4. Involving others iS u p p o rt In te rv e n ti o n M an u al 58 2. Types of help and support that you might need First let’s look at an example to find out whether Li, David and Fatima are receiving help, and if so, what kind of help. z Li takes care of her mother who has dementia. She receives no help from others. She spends a lot of time taking care of her mother and feels overwhelmed. She would like to get some help from others. z David takes care of his wife who has dementia. David has involved his two sisters in the care. The sisters regularly take his wife out for shopping or help clean the house. z Fatima takes care of her husband who has dementia. Fatima receives help from her family, friends and neighbours. Some helpers assist with shopping or cleaning the home, others take her husband for a walk or just listen to the difficulties she has with his memory loss. z Friends: Mohammed is always there to listen when I need it. The types of help and support that Fatima receives are presented below. Practical help z Family: once a month my sister helps with cleaning the house. z Friends: once a week my friend Hiba comes over to help with shopping and cooking. z Family: several family members take my husband out for a walk on a regular basis. Help with pleasant activities Emotional support MODULE 2 Le ss on 4 . I nv ol vin g ot he rs z Acquaintances/neighbours: my neighbours help to find information on dementia. Providing information iS u p p o rt In te rv e n ti o n M an u al 59 What kind of help do you receive? Please write down the types of help that you receive in the spaces below. If the help you receive is not listed below, use the ‘Other help’ box at the end to fill in your answer. Do your family, friends, neighbours or others provide: Practical help? Emotional help? Help with pleasant activities? 1. Activity MODULE 2 Le ss on 4 . I nv ol vin g ot he rs iS u p p o rt In te rv e n ti o n M an u al 60 Information? Other help? 1. Activity Keep in mind that sharing care tasks is common. It may allow you to do something pleasant for yourself, run an errand without having to bring the person you care for, or just enjoy a well-deserved break. Tip MODULE 2 Le ss on 4 . I nv ol vin g ot he rs iS u p p o rt In te rv e n ti o n M an u al 61 Your own support network Take a look at your own network as stated in the previous pages, what do you see? Please select the response that applies to the help that you receive. „ I receive help in one category. It is very good that you are already involving others. You might want to receive help in other ways too. Think about people who might be able to help you. „ I receive help in more than one category. It is very good that you are already involving others in caring for your family member or acquaintance. If needed, you can ask for help from other people as well. Perhaps the examples helped you identify people you had not considered before. „ I do not receive help. Keep in mind that providing care can be difficult. Think about ways to involve others in sharing the tasks. Remember that you do not know whether people will want to help unless you ask. It can be difficult to find help if you don’t have family nearby or live in a rural or isolated area, or if your family refuses to help. Think about alternatives such as your faith community, contacting your doctor for advice, or your national / local dementia association. 2. Activity MODULE 2 Le ss on 4 . I nv ol vin g ot he rs iS u p p o rt In te rv e n ti o n M an u al 62 What would you like to get more help with? Before you ask someone for help, it is important to know what it is you would like to ask. It can help to make a wish list of your needs. Let’s first have a look at Li, David and Fatima. You can see their wish lists below. Li I would like one evening for myself to do a hobby or activity. I would like help with cleaning the house. David I would li ke to hav e someone I can talk to about my feelings. Fatima I would like to get into contact with other carers to share my experiences and receive tips. MODULE 2 Le ss on 4 . I nv ol vin g ot he rs iS u p p o rt In te rv e n ti o n M an u al 63 Make a list of wishes that seem achievable Wish 1 Wish 2 Wish 3 What is on your wish list? Make your own wish list for the help or support that you would like to receive. Wishes could be for example: z I would like help with bathing the person I care for. z I would like advice on how to deal with the person I care for. z I would like adjustments to be made in my home to accommodate the care needs of the person I care for. List those wishes that you think are achievable. If you know beforehand that you might not be able to achieve a certain wish, it might be better to list a different wish that is more attainable. For instance, Li would prefer to hire someone to clean the house every week. However, Li cannot afford this and realizes that her wish is not realistic. She could hire someone to clean the house once every two weeks or ask someone who she does not need to pay, such as a friend or relative. She can ask the person to clean the whole house, or to help with specific tasks that are difficult for her, such as cleaning the floors. 3. Activity MODULE 2 Le ss on 4 . I nv ol vin g ot he rs iS u p p o rt In te rv e n ti o n M an u al 64 Now it is time to think about who could help. Some people have no problem asking for help, other people are not used to it but do not mind giving it a try. There are also people who find it very difficult to ask for help. The next section will teach you skills to ask for help effectively. Keep in mind your support wish list. 3. Effectively asking for help from others If you would like to ask others for help it is important to do so in an effective way. This means that you should be able to talk to others about your thoughts, feelings and experiences. It also means that you stand up for yourself. Things that will help you to effectively ask for help: z Think about what you want or need and what your feelings are about the current situation. z Describe your problem in one or two sentences. z Describe your thoughts and feelings clearly, so that the other person can understand your point of view. Who can I turn to? z Be honest and direct. z Keep the feelings of the other person in mind. z Give detailed information about what kind of help you need. z Be flexible: maybe you won’t get exactly what you asked for, but you will get something that will be helpful. z Break it down into smaller parts – it’s usually easier for people to say yes to a little request than to a big one. z If you reach a point where you do not know what to do anymore: take a break – go back to the discussion at a future time. For example: agree to think about it and talk again tomorrow afternoon. z If appropriate, offer to do the task together first. z Don’t give up. It may take many attempts before things change. z Asking for help will not always lead to the result you want, but it is important that you feel able to ask for it. MODULE 2 Le ss on 4 . I nv ol vin g ot he rs iS u p p o rt In te rv e n ti o n M an u al 65 „ Li tells her sister that she wants to take care of their mother, but that she just needs a short break from caregiving during the week. She says: “I would like to discuss how you could help in a way that is possible for you.” Which of the following examples represents an effective way to ask for help? Please check the one response that you think is correct. She knows who to turn to for help and decides to ask her sister. Li would like to have an evening to herself once a week. She tries to ask for help in three different ways. Let’s have a look at Li again „ Li decides to attend a weekly one-hour class in the evening to have a break from providing care. However, she does not discuss with her sister the importance of having a break during the week. When she asks her sister to take care of their mother for an hour, her sister said: “Sorry, I have no time.” Li cancels her class. „ Li approaches her sister by saying, “I’m sick and tired of you not doing anything! You never have time to help me care for our mother!” 1. Check your understanding Asking for help effectively. MODULE 2 Le ss on 4 . I nv ol vin g ot he rs iS u p p o rt In te rv e n ti o n M an u al 66 Your own plan to involve others Make your own plan to involve others in caring for your family member or acquaintance with dementia. Now think of your wishes and who you can turn to for help. Imagine yourself in a situation in which you will ask for help. Please answer the following questions in the boxes below. Who would you like to ask for help? What would you like to say? What would you do if the person does NOT want to help? What would you do if the person does want to help? 4. Activity MODULE 2 Le ss on 4 . I nv ol vin g ot he rs iS u p p o rt In te rv e n ti o n M an u al 67 You finished this lesson, well done! MODULE 2 Le ss on 4 . I nv ol vin g ot he rs iS u p p o rt In te rv e n ti o n M an u al 68 MODULE 2 AN SW ER S - B EI NG A C AR ER • Le ss on 4 8 Example 2 Passive. This is not an effective way of asking for help. Her sister may not be aware that Li is feeling overwhelmed. Li is not being honest about her feelings and is trying to avoid a conflict with her sister. She does not stand up for herself. It is a passive way of asking for help. 8 Example 3 Aggressive. This is not an effective way of asking for help. Li becomes angry. However, her sister may not be aware that Li is feeling overwhelmed, because she did not clearly mention this. She does not approach her sister in a respectful way. It is an aggressive way of asking for help. Which of the examples is an effective way to ask for help?✗ 9 Example 1 Effective. This is an effective way of asking for help. Li stands up for herself, says what she is thinking and is honest about her need for a regular break. She also keeps the interests of her sister in mind. 1. Check your understanding Asking for help effectively. ANSWERS - BEING A CARER Lesson 4. Involving others M od ul e 3 . C ar in g fo r m e CARING FOR ME Lesson 1. Reducing stress in everyday life Lesson 2. Making time for pleasant activities Lesson 3. Thinking differently 3 MODULE iS u p p o rt In te rv e n ti o n M an u al 70 Why is this lesson important? It is important to take care of yourself while caring for another person. This lesson will help you to keep providing care. How will this lesson help me? This lesson helps to reduce stress and renew your energy with exercises that do not take much time. What will I learn? 1. The importance of relaxing. 2. Different ways to relax: z basic breathing; z mindful breathing; z neck movements; z number counting; z imagery; z total stretching; z muscle relaxation. 3. Relaxing at any time and any place. MODULE 3 Le ss on 1 . R ed uc in g st re ss in ev er yd ay lif e Lesson 1. Reducing stress in everyday life iS u p p o rt In te rv e n ti o n M an u al 71 1. The importance of relaxing Let’s look at an example Diana: no time, no energy Diana takes care of her husband Dan who has dementia. She feels increasingly tense. A friend advises her to try to relax and not ask too much of herself. Diana tells her friend that she does not have the time or energy to relax. Her friend explains that there are ways to relax that do not take much time, and that relaxing might give Diana renewed energy that could help her get tasks done more easily. Diana succeeds in relaxing Diana decides to follow her friend’s advice and tries the breathing exercise her friend showed her. When Diana sees her friend again she says: “Thank you for the good advice. Although I still have a lot to do, I feel less tense.” Diana decides to do the breathing exercise every time she is feeling tense. Relaxation: z makes you feel less tense; z might give you renewed energy; z may make it easier to get tasks done; and z does not have to take much time. MODULE 3 Le ss on 1 . R ed uc in g st re ss in ev er yd ay lif e Reminder iS u p p o rt In te rv e n ti o n M an u al 72 2. Different ways to relax There are different ways you can relax. Try and see which one(s) suit you best. Before you try an exercise ask yourself: “How tense am I feeling”? After the exercise, ask yourself again. This might help you understand whether this type of relaxation helps you feel less tense. In this lesson you will find seven relaxation exercises. The first three exercises will take only a few minutes (i.e. 5 minutes max.). The other exercises will take a little longer (i.e. 10-15 minutes max.). Use the scale below of 1-10 and tick what number describes how tense you are feeling now, 1 is very small amount of tension and 10 is very high amount of tension. VERY SMALL VERY HIGH 1 42 53 6 7 8 9 10 MODULE 3 Le ss on 1 . R ed uc in g st re ss in ev er yd ay lif e Focusing on your breathing is relaxing. By doing a breathing exercise you could reduce tension. This exercise will take: less than 5 minutes. Caution: if you experience difficulty breathing, this exercise might not be the best option for you. This is how you do it: z When sitting down, sit up straight in your chair with your back against the back of your chair. z When standing, stand up straight. z Put both of your feet flat on the surface. z Focus on your breathing. z Keep breathing like you are used to. z Try to feel how you breathe. Put your hand on your stomach to feel how you inhale and exhale. z Exhale from your mouth and pull in your stomach as much as possible. z Follow your breathing in this manner a couple of breaths and then stop the exercise. 1. Relaxation activity - Basic breathing iS u p p o rt In te rv e n ti o n M an u al 73 This exercise will help you feel calm and reduces stress. You will breathe with your stomach according to a rhythm. This exercise will take: 5 minutes. This is how you do it: z Sit straight in a chair and make sure your face and shoulders are relaxed. z Bring your hands to your stomach and breathe into it. z Breathe in for 4 counts and out for 8 counts, at a comfortable pace. z Your stomach should expand with each inhale and contract with each exhale. z Return to your normal breathing and spend one minute just observing yourself breathing and noticing how you feel. z Practice listening to your own thoughts without negative judgement. z If your mind wanders, refocus on breathing and meditation. With this exercise you will feel less tension in your neck. It will also increase the blood flow to your brain. This exercise will take: 5 minutes. This is how you do it: z Make sure to move slowly and with attention. z Bend your neck forward and backward. z Inhale while you lift your head up and back. Exhale while you drop your chin to your chest. z Rotate your chin from side to side. z Inhale when your chin is in the centre. Exhale when you look to the side. z Drop your ear towards your shoulder. z Inhale when you are in the centre. Exhale when you drop your ear to your shoulder. z Repeat 5 times. Relaxation exercise - Neck movements MODULE 3 2. Relaxation activity - Mindful breathing 3. Relaxation activity - Neck movements Le ss on 1 . R ed uc in g st re ss in ev er yd ay lif e iS u p p o rt In te rv e n ti o n M an u al 74 This exercise will take: 5 minutes. This is how you do it: z Sit or lie down comfortably in a quiet place. z Breath slowly. z With each breath, take at least 3 seconds to breathe in and 6 seconds to breath out. z Focus on your breathing and your lower stomach when you breathe until you feel calm and peaceful inside your heart and mind. z Say the word ‘relax’ whenever you breathe out. z Tell yourself that you will start counting down from 20 to 1. You can relax by focusing on your breathing and counting back from 20 to 1. z Tell yourself that you will double your level of relaxation for each and every count, and will be totally relaxed when you reach 1. z Start counting down from 20 to 1 slowly. Say the word ‘relax’ whenever you count (that is, take a deep breath, say ‘20’, breathe out slowly and say ‘relax’, take a deep breath, count ‘19’, breathe out slowly and say ‘relax’, and so on). z Now repeat this exercise but with your eyes closed. Relaxation exercise - Number counting MODULE 3 4. Relaxation activity - Number counting Le ss on 1 . R ed uc in g st re ss in ev er yd ay lif e iS u p p o rt In te rv e n ti o n M an u al 75 You can relax by imagining you are in a place or surrounded by people and things you like. This exercise will take: 5 minutes. Before completing this exercise, take a look at the helpful guidelines below. z Only imagine places, people and things you like. z Imagine what you can hear, feel, smell, and/or taste if you were in that place. z Try to think of very specific details of the place, thing or person. For example, how does the surface of the thing feel and how does it smell? Now try to relax while imagining that you are in a place or with the people or things that you like. This is how you do it: z Sit or lie down comfortably in a quiet place. z Breathe slowly. z With every breath, take at least three seconds to breathe in and at least six seconds to breathe out. z Focus on your breathing and your lower stomach when you breathe until you feel peaceful inside. z Imagine you are in a place or surrounded by things or people you like. z Now do this exercise again but close your eyes. MODULE 3 5. Relaxation activity - Imagery Le ss on 1 . R ed uc in g st re ss in ev er yd ay lif e iS u p p o rt In te rv e n ti o n M an u al 76 This exercise is particularly helpful when your muscles feel tense. This exercise will help you relax by tensing and relaxing your muscles. This exercise will take: 10-15 minutes Caution: if you have any injuries or any other physical limitations, this may not be the best exercise for you. Try one of the other exercises. Below are some general instructions for you to keep in mind. z When you are ready to begin, tighten the muscle group described. Make sure that you can feel the tension, but no pain. Keep the muscle tensed for approximately 5 seconds. z Relax the muscles and keep it relaxed for approximately 10 seconds. It may be helpful to say ‘relax’ as you relax the muscle. z When you have finished the muscle relaxation, remain seated for a few moments allowing yourself to become alert. This is how you do it: z Right hand and forearm: make a fist with your right hand. Hold for 5 seconds and then relax for 10 seconds. Don’t forget to breathe. It might be helpful to inhale while tensing your muscles and exhale while relaxing your muscles. Do the same for your left hand and forearm. z Right upper arm: bring your right forearm up to your shoulder to ‘make a muscle’. Hold for 5 seconds and then relax for 10 seconds. Do the same for your left upper arm. z Forehead: raise your eyebrows as high as they will go, as though you were surprised by something. Hold for 5 seconds and then relax for 10 seconds. z Eyes and cheeks: squeeze your eyes closed. Hold for 5 seconds and then relax for 10 seconds. z Mouth and jaw: open your mouth as wide as you can, as if you are yawning. Hold for 5 seconds and then relax for 10 seconds. MODULE 3 6. Relaxation activity - Muscle relaxation Le ss on 1 . R ed uc in g st re ss in ev er yd ay lif e Please continue the exercise on the following page. iS u p p o rt In te rv e n ti o n M an u al 77 z Neck: be careful as you tense these muscles. Face forward and then pull your head back slowly, as though you are looking up to the ceiling. Hold for 5 seconds and then relax for 10 seconds. z Shoulders: tense the muscles in your shoulders as you bring them up towards your ears. Hold for 5 seconds and then relax for 10 seconds. z Shoulder blades/Back: push your shoulder blades back, trying to almost touch them together, so that your chest is pushed forward. Hold for 5 seconds and then relax for 10 seconds. z Chest and stomach: breathe in deeply, filling up your lungs and chest with air. Hold for 5 seconds and then relax for 10 seconds. z Hips and buttocks: squeeze the muscles in your buttocks. Hold for 5 seconds and then relax for 10 seconds. z Right upper leg: tighten your right thigh. Hold for 5 seconds and then relax for 10 seconds. Repeat for your left upper leg. z Right lower leg: do this slowly and carefully to avoid cramps. Pull your toes towards you to stretch the calf muscle. Hold for 5 seconds and then relax for 10 seconds. Repeat for your left lower leg. z Right foot: curl your toes downwards. Hold for 5 seconds and then relax for 10 seconds. Repeat for your left foot. MODULE 3 6. Relaxation activity - Muscle relaxation (continued) Le ss on 1 . R ed uc in g st re ss in ev er yd ay lif e iS u p p o rt In te rv e n ti o n M an u al 78 Stretching your muscles can help to decrease tension. Stretching exercises are very convenient since you can do them anywhere and anytime. This exercise will take: 10 minutes. This is how you do it: z Stand up, or do this exercise in your chair. z Take a deep breath, all the way down to the bottom of your stomach, and slowly let it out. z As you exhale, feel the tension drain from your body. z Take one more breath and hold it for a moment… and let it out slowly. z With each breath you are becoming more and more relaxed. z Now, gently reach your arms out to the sides as though you were trying to touch the walls. z Relax your shoulders and stretch yourself a little. z Gently reach your arms out in front of you. z Feel the muscles in your back and shoulders loosen up. z Stretch out in front a little further. z And now reach up as high as you can. z Push up your arms towards the sky, as if you were trying to reach the sun. z Again, reach your arms out to the sides as though you were trying to touch the walls, as though you were trying to push them outwards. z Reach out in front of you. z Feel your muscles in your back and shoulders become looser and less tense. z Reach towards the sky one more time. z Reach as high as you can. z Try to touch the sun. z Lower your arms to your sides. MODULE 3 7. Relaxation activity - Total stretching Le ss on 1 . R ed uc in g st re ss in ev er yd ay lif e Please continue the exercise on the following page. iS u p p o rt In te rv e n ti o n M an u al 79 z Now, roll your shoulders back. z Feel the tension drain form your body. z Roll your shoulders back again. One more time roll your shoulders. z Now roll them forward. Forward again. One more time forward. z Now shrug your shoulders, lifting them up and then pushing them down. Shrug your shoulders again. Shrug them one more time. z Now another deep and refreshing breath and exhale all of the tension in your body. z Take one more breath…and exhale letting go of any remaining tension. MODULE 3 7. Relaxation activity - Muscle relaxation (continued) Le ss on 1 . R ed uc in g st re ss in ev er yd ay lif e iS u p p o rt In te rv e n ti o n M an u al 80 You can take some time to relax at any time of the day and in any place. Let’s look at an example Diana: relaxing while waiting in line Diana often feels tense when there is a long line in the store, as she is aware she still has many other things to do. She decides to do the breathing exercise while waiting in line. Afterwards, she feels less tense. You can also plan a specific time to relax, for example every day after lunch. You can choose what suits you best. If necessary, you can use a reminder to make sure that you do not forget to take some time to relax. 3. Relaxing at any time and any place z You can take some time to relax anywhere and at any time of the day. z Set a goal: try to do a relaxation exercise at least once a day. z You can plan a specific time to relax every day (if necessary, use a reminder). z You will benefit from having renewed energy and a better mood after doing the relaxation exercises. z Even a brief exercise can make a difference! z You will also be able to reduce feelings of tension and continue caring for your family member or acquaintance over the long term. MODULE 3 Keep in Mind Le ss on 1 . R ed uc in g st re ss in ev er yd ay lif e iS u p p o rt In te rv e n ti o n M an u al 81 Was this helpful for you? If not, there might be different reasons why relaxation was not helpful to you: z Perhaps you could not focus on relaxing. z Try again at another time! z Maybe you like an exercise, but you need some more practice to really benefit from it. Try to do this exercise regularly. z The exercise you chose may not have suited you. Try a different exercise! z The exercise you chose was too short. z Try this exercise again or do another one! If the exercises are still not helping you after these tips, try to do an activity you enjoy. Have a look at Lesson 2. Making time for pleasant activities in this module to find out which activities you may enjoy. MODULE 3 Le ss on 1 . R ed uc in g st re ss in ev er yd ay lif e You finished this lesson, well done! iS u p p o rt In te rv e n ti o n M an u al 82 1. The importance of pleasant activities Pleasant activities are important because caregiving can last a long time and doing pleasant activities can help you to relax and continue providing care. Pleasant activities can be small things such as going for a walk or talking to a friend. This may not always be easy, because providing care can be time- consuming and someone might have to take over the care for your family member or acquaintance while you are not there. Let’s see how Amy, Jose, and Umit experience caregiving and the importance of planning pleasant activities. Amy Amy takes care of her mother who is living with dementia. She dedicates most of her time to caregiving and rarely takes time for herself. She does not engage in any pleasant activities. Amy notices that recently she is more tired than usual and feels that she is not able to care for her mother as she did before. Why is this lesson important? It is important to take care of yourself while caring for another person. This lesson will help you to keep providing care. How will this lesson help me? This lesson will help you to take time for yourself and do pleasant activities to relax. What will I learn? 1. The importance of pleasant activities. 2. Barriers to doing pleasant activities. 3. Making pleasant activities achievable. 4. Doing pleasant activities together. MODULE 3 Le ss on 2 . M ak in g tim e f or p lea sa nt ac tiv iti es Lesson 2. Making time for pleasant activities iS u p p o rt In te rv e n ti o n M an u al 83 Jose Jose takes care of his brother who is living with dementia. Jose does not get a lot of sleep and rarely has time for afternoon naps. He recently started asking his sister to come by and help with caregiving so he can take a nap and read a magazine each afternoon. Umit Umit takes care of his wife who is living with dementia. Recently, he has hired a professional carer who stops by three times a week to help him care for her. When the professional carer is there, Umit reads the newspaper or goes for a walk. z If you are not able to make time for yourself, you can get very tired which may make you less able to continue providing care. z You can ask family and friends to help care for the person living with dementia so that you can take some time for yourself. z If it is affordable, you could hire a professional carer to help you care for your family member or friend so you can take some time for yourself. MODULE 3 Keep in Mind Le ss on 2 . M ak in g tim e f or p lea sa nt ac tiv iti es iS u p p o rt In te rv e n ti o n M an u al 84 Which pleasant activities would you like to do? Once you have some time for yourself, it can be hard to think of the things you would like to do. There are many possibilities and even in a short amount of time, you can still do an activity that you like. In this exercise you will make a list of pleasant activities that you would like to do. Please check at least two activities that you would like to do more often. If your favourite activity is not listed below, use the ‘other’ box to write your own activity. „ Do a crossword puzzle „ Watch TV „ Visit friends or family „ Cook „ Listen to music „ Do crafts „ Read „ Take a nap „ Go shopping „ Take a walk „ Exercise „ Other: 1. Activity MODULE 3 Le ss on 2 . M ak in g tim e f or p lea sa nt ac tiv iti es iS u p p o rt In te rv e n ti o n M an u al 85 2. Barriers to doing pleasant activities Let’s go back to Amy’s example Amy dedicates most of her time to caring for her mother who has dementia. She does not receive any help and is tired all the time. She is struggling to care for her mother and has stopped doing the things she likes because she feels that she does not have enough time. Eventually, Amy is so tired that she decides to ask her friend for help. She is now able to make some time for herself and engage in pleasant activities. Amy feels more energized afterwards. She also feels that she is better able to handle the care for her mother as a result. Other reasons you may feel unable to do pleasant activities Not having time was the reason that Amy did not feel as though she could do any pleasant activities. However, there are several other reasons. MODULE 3 Le ss on 2 . M ak in g tim e f or p lea sa nt ac tiv iti es iS u p p o rt In te rv e n ti o n M an u al 86 Do you recognize any of the following? Please select any that may apply to you. „ No time. You might feel that you are too busy and not able to find any spare time. It is really important that you try to make some time during the day or in the evening to do something you enjoy. If you have little time, there are some pleasant activities that do not take up a lot of time and which you can fit in around your day. „ No energy. You might have less energy because caregiving can be tiring. Although it is hard to imagine, it is likely that you will feel more energized after doing something you like. „ No money. You might think that you have to spend lots of money to do something pleasant. Pleasant activities do not have to be costly. You can keep the activities as simple as you want them to be. For example, things like meeting a friend for a cup of tea or going for a walk by yourself do not cost money. „ Not in the mood. You might not feel like doing pleasant activities. Although it is hard to imagine, it is likely that your mood will be better after doing something you like. On the other hand, not doing pleasant activities will likely worsen your mood. „ Physical limitations. You might think that if you have physical limitations, you are not able to do a pleasant activity. If you have physical limitations, think of activities that you can do despite your limitations. There are many possibilities, such as reading, playing a game or talking to a friend. „ Guilt. You might feel guilty because you will feel that you are running away from the person you care for. You need time to do things you like, relax and recharge so that you can provide adequate care for them. Being a good carer means taking care of yourself as well. 2. ActivityMODULE3 Le ss on 2 . M ak in g tim e f or p lea sa nt ac tiv iti es iS u p p o rt In te rv e n ti o n M an u al 87 Suggestions for doing pleasant activities z Consider asking someone to help you with some of your day-to-day tasks. z Consider the impact of not doing certain tasks at that moment. For example, what is the impact of not cleaning the house every day? You may realize that you can be more flexible and have more time as a result. z Try to do one activity at a time and finish the things you have started as much as possible. If you leave something unfinished, it may make you feel dissatisfied. You may not be able to focus entirely on your next activity. You could feel more energized if you complete an activity before taking on another. z Think about ways to better manage your time. Consider using an agenda or calendar. z Talk to someone about how you might be able to better manage your time. Seeking another opinion or suggestions may be helpful. MODULE 3 Le ss on 2 . M ak in g tim e f or p lea sa nt ac tiv iti es Consider asking for help. iS u p p o rt In te rv e n ti o n M an u al 88 Now rate how achievable it would be for you to do the pleasant activities that you chose earlier in this lesson (see the exercise on page 84). 3. Making pleasant activities achievable Read every activity and consider whether the activity is: 1. unachievable; 2. unlikely to be achievable; 3. somewhat achievable; 4. achievable; 5. very achievable. Please check at least two activities that you would like to do more often. If your favourite activity is not listed below, use the ‘other’ box to write your own activity. „ Do a crossword puzzle „ Watch TV „ Visit friends or family „ Cook „ Listen to music „ Do crafts „ Read „ Take a nap „ Go shopping „ Take a walk „ Exercise „ Other: MODULE 3 3. Activity Le ss on 2 . M ak in g tim e f or p lea sa nt ac tiv iti es Unlikely to be achievable Somewhat achievable Achievable Very achievableUnachievable iS u p p o rt In te rv e n ti o n M an u al 89 4. Doing pleasant activities together It can be very rewarding to do pleasant activities with the person that you care for. However, it might be difficult at first to think of pleasant activities that are suitable for both of you. In this exercise we will make a list of the pleasant activities that you can do with the person you care for. First, take a look at Jose’s experience from the previous exercise. Jose Jose takes care of his brother who is living with dementia. In addition to taking a nap while his sister takes care of his brother, Jose takes his brother out for walks around the neighbourhood. His brother enjoys the walks and Jose is also able to get some exercise and fresh air. Which of your activities can you do today? It is a good idea to start with your pleasant activities as soon as possible and incorporate them into your routine. Which of your activities can you do today? If it is inconvenient to start an activity today, think about the pleasant activities you could do tomorrow. Start with small goals and add more pleasant activities after you feel successful with your first try. Rethink the activities that you would like to do to help make them more achievable. z Pleasant activities should be achievable. z There are different reasons why you can feel that pleasant activities are not achievable. z There are ways to undertake pleasant activities despite these reasons. Remember MODULE 3 Le ss on 2 . M ak in g tim e f or p lea sa nt ac tiv iti es iS u p p o rt In te rv e n ti o n M an u al 90 Please select at least one activity that you would like to do together more often. If an activity is not listed below, use the ‘other’ box at the bottom of the list to add the activity that you would like to do. Keep in mind that despite the challenges, pleasant activities are good for you and are necessary to ensure that you are able to keep providing care to your family member or acquaintance. What would you like to do more often? Take a look at the list below for examples that you can do with the person that you care for. „ Listen to music „ Play a musical instrument „ Take a relaxing walk „ Listen to or read stories, newspaper articles, poems, etc. „ Go out to eat together „ Cook and prepare snacks „ Watch birds or animals „ Do handiwork or crafts „ Look at photos „ Watch the clouds or explore nature „ Recall and discuss happy memories „ Have friends over to visit „ Other: Activity MODULE 3 Le ss on 2 . M ak in g tim e f or p lea sa nt ac tiv iti es iS u p p o rt In te rv e n ti o n M an u al 91 MODULE 3 Le ss on 2 . M ak in g tim e f or p lea sa nt ac tiv iti es You finished this lesson, well done! iS u p p o rt In te rv e n ti o n M an u al 92 Why is this lesson important? Your thoughts determine how you feel. Unhelpful thoughts can make us feel bad. How will this lesson help me? This lesson will help you think differently and change your unhelpful thoughts into helpful ones. What will I learn? 1. Thoughts determine how we feel. You cannot change what happens, but you can change your response. 2. Learn to think differently by changing unhelpful thoughts into helpful ones. 3. Thinking differently makes you feel better. 1. Thoughts determine how we feel There are different ways to deal with stressful events. One way is to think differently. Let’s look at an example. MODULE 3 Le ss on 3 . T hi nk in g di ffe re nt ly Lesson 3. Thinking differently It is not an event that makes you feel angry, sad, happy or guilty, it is how you think about it. An event can be anything. Here are a few examples: z The person you care for becomes angry when you ask him/her something. z Your family member who promised to help you does not turn up or cancels on you. z The person you care for cannot find something. z Your family member is blaming you for not providing the right care. Many people think that their feelings are a direct consequence of an event. However, it is the way that you think about the event that determines how you feel. iS u p p o rt In te rv e n ti o n M an u al 93 What do you think Jo should do? Please check all the responses that you feel are appropriate. „ Tell Max that she cannot help him search now and leave. „ Search for the keys until she finds them. „ Tell Max that he should be more careful not to lose his keys in the future. „ Think to herself, “Max has dementia and is sometimes worried when he loses things. I can take some time to help and then go.” Then call her friend and explain that she will come later. MODULE 3 1. Check your understanding Feelings and thoughts. z There are many different ways of dealing with events. z Negative thoughts can make us feel bad. z By thinking differently, you might feel better and be able to better deal with events. Keep in mind Le ss on 3 . T hi nk in g di ffe re nt ly Lost keys Jo is married to Max who is living with dementia. She is about to leave the house to visit a friend. Max says, “I can’t find my keys! You cannot leave me without keys!” Jo thinks to herself: “I cannot leave him alone anymore.” She starts to feel miserable. iS u p p o rt In te rv e n ti o n M an u al 94 Jo thinks to herself when Max cannot find his keys: “I cannot leave Max alone anymore.” This makes her feel miserable. This means that Jo is thinking in an unhelpful way. Unhelpful thoughts can make it harder to respond in useful ways to situations like this. Instead, Jo could think: “Max has dementia and is sometimes worried when he loses things. I can take some time to help and then go.” This different way of thinking will probably make Jo feel better and help her stay calm and compassionate. Helpful thoughts can make it easier to respond in useful ways to situations like these. Jo’s unhelpful and helpful thoughts z It is not the event itself that makes you feel angry, sad, happy or miserable. z Helpful or unhelpful thoughts can determine how you respond to a situation. z By changing your thoughts, you could help change the way you feel. MODULE 3 Keep in mind Le ss on 3 . T hi nk in g di ffe re nt ly iS u p p o rt In te rv e n ti o n M an u al 95 Can you indicate which of Aryan’s thoughts may help make her feel better? Aryan might think… „ Making time for myself helps me to provide better care. „ I am a bad carer if my family member is not always happy. „ Maybe the person living with dementia will become better. „ No one understands how hard it is to care. „ No one can provide the care the way I do. „ Asking others for help can help me to share the duties of care. „ Dementia is a disease, it is not my or anyone else’s fault. Unhelpful thoughts make you feel bad Aryan has been caring for her family member who is living with dementia for several years now. She has many thoughts. Some make her feel worse, some make her feel better. z Unhelpful thoughts can make you feel bad. z Helpful thoughts are important to feel better and will assist you in dealing with situations in a more useful way. z To feel better, it is important to identify unhelpful thoughts. MODULE 3 Keep in mind2. Check your understanding Thoughts that can make you feel better. Le ss on 3 . T hi nk in g di ffe re nt ly iS u p p o rt In te rv e n ti o n M an u al 96 How do you think Xavier is feeling? Please check all the responses that you feel are appropriate. „ Angry „ Guilty „ Happy „ Lonely „ Sad „ Supported „ Upset 2. Learn to think differently by changing unhelpful thoughts into helpful ones What if Xavier instead thinks to himself, “if Gabriel thinks I need help, he must care about me and my father and wants to make sure we are doing well”? MODULE 3 3. Check your understanding How thoughts influence our feelings. Le ss on 3 . T hi nk in g di ffe re nt ly Xavier meets his friend Gabriel Xavier takes care of his father, who is living with dementia. While he is shopping, he meets his friend Gabriel, who asks, “How are you? Do you need any help caring for your father?” Xavier thinks to himself, “if Gabriel thinks I need help, he must think that I am a bad carer”. How does Xavier feel now? Please check all the responses that you feel are appropriate. „ Angry „ Guilty „ Happy „ Lonely „ Sad „ Supported „ Upset 4. Check your understanding Match feelings to a helpful thought. Sometimes you cannot change the things that happen (events), but you can change your response (thoughts). Keep in mind iS u p p o rt In te rv e n ti o n M an u al 97 „ I have to do everything alone. „ The person I care for does not care about me anymore. „ When the person I care for is not happy, it means that I am a bad carer. „ Maybe the person I care for will get better. „ I must always be available for the person I care for. „ I should not consider my own needs if I want to be a good carer. „ No one understands how hard it is to care. „ No one can provide care the way I do. „ He/she being diagnosed with dementia has complicated my life. „ I have no time for others as a carer. „ I feel sorry for the person I care for. „ Other people are better off than the person I care for and I. „ Other: MODULE 3 Le ss on 3 . T hi nk in g di ffe re nt ly Which unhelpful thoughts do you have? Please check the unhelpful thoughts that you have or provide additional examples. In an earlier example you indicated which thoughts are helpful and which may be unhelpful. Below you will find a list of unhelpful thoughts. 1. Activity iS u p p o rt In te rv e n ti o n M an u al 98 Changing your unhelpful thoughts to helpful ones can make you feel better.In an earlier example you indicated which thoughts are helpful and which may be unhelpful. Below you will find a list of helpful thoughts. Please check the helpful thoughts that you have or provide additional examples. „ It is okay to take time to relax as it will help me to provide a good standard of care. „ Sharing my feelings with others helps to take the pressure off. „ Asking for help from others can help me to share the burden of care. „ Making time for myself helps me to provide better care. „ Dementia is a disease; it is not my or anyone else’s fault. „ I do not have to give others their way all the time. „ Other: Which helpful thoughts do you have? MODULE 3 Keep in mind Le ss on 3 . T hi nk in g di ffe re nt ly 2. Activity iS u p p o rt In te rv e n ti o n M an u al 99 3. Thinking differently makes you feel better You cannot change the things that happen, but you can change your response. In other words, you cannot change events but you can change your thoughts. Example 1: Wei Wei takes care of his wife Xu, who is living with dementia. He writes the following: Name: Wei Yesterday my wife Xu and I visited some friends. We had tea together. Xu dropped her cup on the floor. When they started to clean the floor, Xu did not help, but she stood in the way. She did not apologise for her behaviour, but laughed. Our friends are upset with my wife and won’t invite us to their house again. My wife has dementia and is unable to think and act in the same way that she used to. Our friends won’t blame my wife as I have explained to them that she has dementia and that her thinking has declined. Instead of feeling worried and ashamed, I would have felt happy about the day we spent with our friends. What was the event that made you feel upset or miserable? What were your unhelpful thoughts? What would be more helpful to think? How could the helpful thoughts make you feel? MODULE 3 Le ss on 3 . T hi nk in g di ffe re nt ly iS u p p o rt In te rv e n ti o n M an u al 100 Example 2: Helen Helen takes care of her brother Matty, who is living with dementia. She writes the following: MODULE 3 Name: Helen A week ago, our sister came to visit us. At the end of the day, I said to Matty, “it was a great day, don’t you think?” Then he said that he was not sure, because he could not remember exactly what we had been doing. He said that he was tired and wanted to sleep. Nothing we do is worthwhile because Matty forgets everything. Everything is ruined because of his dementia. Even though he cannot remember what we did, I know that he had a great day too, and that is what counts. He smiled a lot today and kept saying how nice it was that our sister came. Instead of feeling sad and miserable, I would have felt happy about the day we spent with our sister. What was the event that made you feel upset or miserable? What were your unhelpful thoughts? What would be more helpful to think? How could the helpful thoughts make you feel? Le ss on 3 . T hi nk in g di ffe re nt ly iS u p p o rt In te rv e n ti o n M an u al 101 Now it’s your turn. In the next exercise you will work to change your unhelpful thoughts into helpful ones. Try to think of a recent event that made you feel upset and answer the questions below. You can refer back to the examples on the previous page for some help. MODULE 3 Le ss on 3 . T hi nk in g di ffe re nt ly Name: What was the event that made you feel upset or miserable? What were your unhelpful thoughts? What would be more helpful to think? How could the helpful thoughts make you feel? iS u p p o rt In te rv e n ti o n M an u al 102 Name: What was the event that made you feel upset or miserable? What were your unhelpful thoughts? What would be more helpful to think? How could the helpful thoughts make you feel? Practice makes perfect. Do you want to try one more time? Please answer the questions below for a different event. MODULE 3 Le ss on 3 . T hi nk in g di ffe re nt ly iS u p p o rt In te rv e n ti o n M an u al 103 You finished this lesson, well done! MODULE 3 There are events in which feeling upset, miserable, sad or angry is inevitable. Examples include: if the person you care for needs to go to the hospital or if you lose a dear friend or family member. To change your thoughts in such events would not do justice to your feelings. Keep in mind Le ss on 3 . T hi nk in g di ffe re nt ly z You cannot change what happens, but you can change your response. z You can learn to think differently by changing your unhelpful thoughts into helpful ones. z Thinking differently makes you feel better. Let’s review what you have learned in this lesson iS u p p o rt In te rv e n ti o n M an u al 104 8 Tell Max she cannot help him search now and leave. This is bad advice. Max has dementia and is feeling worried. He could be very upset if Jo leaves the house right now. 8 Search for the keys until she finds them. This could be helpful. Max might feel safer if he has the keys. However, this may mean Jo misses meeting her friend and is left feeling miserable. 8 Tell Max that he should be more careful not to lose his keys in the future. This is not such good advice. Max has dementia, he cannot help misplacing things. What do you think Jo should do? 9 ✓Think to herself, “Max has dementia and is sometimes worried when he loses things. I can take some time to help and then go.” Then call her friend and explain that she will come later. This is good advice. It is not the fact that Max has lost the keys that is making Jo miserable, but her concern that she always needs to help Max and cannot leave him alone anymore. After Jo has called her friend, she can help Max search for the keys, which will make him feel safer. Then she can go to see her friend. 1. Check your understanding Feelings and thoughts. ANSWERS - CARING FOR ME Lesson 3. Thinking differently AN SW ER S - C AR IN G FO R M E • L es so n 3 iS u p p o rt In te rv e n ti o n M an u al 105 9 Making time for myself helps me to provide better care. This is a helpful thought. No one should feel guilty when taking time for themselves. It might help the carer to continue providing care in the long term. 8 I am a bad carer if my family member is not always happy. This thought will make Aryan feel unhappy and sad. The mood of the person living with dementia does not depend solely on the carer. For example, mood can also be related to dementia, depression, functional ability or personality. 8 Maybe the person living with dementia will get better. This thought may make Aryan feel disappointed as people with dementia continue to decline. There are many diseases that cause dementia. Unfortunately, there is no cure for any of these diseases yet. 9 Dementia is a disease, it is not my or anyone else’s fault. This thought is helpful and might prevent feelings of guilt. ✓ Which of Aryan’s thoughts may help make her feel better? 8 No one understands how hard it is to care. This thought may make Aryan feel upset, isolated and lonely. There might be people who do not understand how hard it is to care. However, talking to other people may help them better understand what dementia is and help you to take some pressure off. 8 No one can provide the care the way I do. This thought could make Aryan feel lonely, isolated and under a lot of pressure. Although others may provide care in a different way, that does not mean that it is always of a lower standard. It is important to involve others in caring for a person living with dementia, to avoid getting overwhelmed. 9 ✓Asking others for help can help me to share care duties. This is a helpful thought that may make Aryan feel more in control. Involving other people in caregiving has lots of potential benefits. For instance, the carer will be able to take breaks more regularly and provide care for a longer time. AN SW ER S - C AR IN G FO R M E • L es so n 3 2. Check your understanding Thoughts that can make you feel better. iS u p p o rt In te rv e n ti o n M an u al 106 Xavier thought, “if Gabriel thinks that I need help, he must think I am a bad carer.” How do you think Xavier is feeling? This is an unhelpful thought that may make Xavier feel: 9 upset 9 lonely 9 sad 9 angry 9 guilty Xavier thought, “if Gabriel thinks I need help, he must care about my father and want to make sure that we are doing well”. How does Xavier feel now? This is a helpful thought that may make Xavier feel happy or supported. AN SW ER S - C AR IN G FO R M E • L es so n 3 3. Check your understanding How thoughts influence our feelings. 4. Check your understanding Matching feelings to a helpful thought. M od ul e 4 . P ro vid in g ev er yd ay ca re PROVIDING EVERYDAY CARE Lesson 1. Eating and drinking - more pleasant mealtimes Lesson 2. Eating and drinking - preventing health problems Lesson 3. Toileting and continence care Lesson 4. Personal care Lesson 5. An enjoyable day 4 MODULE iS u p p o rt In te rv e n ti o n M an u al 108 1. Making mealtimes more pleasant Engaging people with dementia in simple tasks around mealtime helps to make the most of people’s skills, promote feelings of self-worth, and enjoy the mealtime. Why is this lesson important? Dementia can affect eating and drinking in various ways depending on the stage of dementia and other health conditions. How will this lesson help me? By learning how to help create more pleasant mealtimes and prevent dehydration. What will I learn? 1. Making mealtimes more pleasant. 2. Promoting a good mealtime atmosphere. 3. Health conditions that affect eating and drinking. 4. Preventing dehydration. MODULE 4 Le ss on 1 . E at in g an d dr in ki ng - m or e p lea sa nt m ea lti m es Lesson 1. Eating and drinking - more pleasant mealtimes iS u p p o rt In te rv e n ti o n M an u al 109 Let’s look at an example MODULE 4 Le ss on 1 . E at in g an d dr in ki ng - m or e p lea sa nt m ea lti m es How would you advise Siya’s family to deal with this situation? Please select the answer that you think is correct from the list. „ Bring Siya’s dinner to her room. „ Demand that Siya joins them for dinner. „ Let Siya help with meal preparation and cleaning activities. 1. Check your understanding Making mealtimes more pleasant. Siya was a housewife and cooked every day for her family for many years. Recently, she lost her husband and now lives with one of her sons. Adi, her daughter-in-law, provides all the cooking in the new household. Siya has been very sad in her new home and says she’s not hungry when she is offered food. She does not join the family for dinner. iS u p p o rt In te rv e n ti o n M an u al 110 Mealtime activities Please select all activities from the list below that you think the person you care for can still engage in and would enjoy. Now, try to think about involving the person that you care for around mealtimes. Mealtime activities Example Washing or drying dishes Shopping together Meal preparation Preparation of the table Cleaning the table „ Let the person living with dementia choose what food and drinks they like to buy for breakfast, lunch and dinner. „ Let the person living with dementia help chopping, stirring, or cooking. „ Let the person living with dementia lay the table for breakfast, lunch and dinner. „ Let the person living with dementia remove everything from the dining table and wipe the table. „ Let the person living with dementia put dishes in the sink or wash and dry the dishes. 1. Activity MODULE 4 Le ss on 1 . E at in g an d dr in ki ng - m or e p lea sa nt m ea lti m es If you think that the person you care for can still engage in and would enjoy any of the listed activities, perhaps you could ask or assist them in trying these activities the next time you have a meal. iS u p p o rt In te rv e n ti o n M an u al 111 2. Promoting a good mealtime atmosphere Mealtime is a good opportunity for carers to show their care and support for the person living with dementia. An enjoyable mealtime atmosphere may help encourage them to eat and drink. Let’s look at an example again. Spilling food Shang has Alzheimer’s disease and lives with his oldest son since his wife passed away a year ago. The family now has four generations who eat together at the table. Shang sees the mealtime as the best time of the day. Recently, Shang’s hands have started to tremble and he often spills or drops food on the table and the floor. How would you advise Shang’s son to deal with this situation? Please check the responses that you feel are appropriate. „ Buy adaptive eating and drinking aids from the shop for Shang. „ Set up a separate table for his father to eat in his own bedroom, because spilling and dropping food may make the family irritated. „ Organize a family meeting to ask all family members to think of more positive and constructive ways to respond to the situation at mealtimes. 2. Check your understanding Promoting a good mealtime atmosphere. MODULE 4 Le ss on 1 . E at in g an d dr in ki ng - m or e p lea sa nt m ea lti m es iS u p p o rt In te rv e n ti o n M an u al 112 Health condition Changes that you may have observed Recommended actions you may try Poor appetite Toothache Poorly fitting artificial dentures „ Does not want to eat the meal „ Eats only small amounts of food „ Takes a long time to eat a small amount of food „ Refuses to eat and drink „ Is restless „ Has a facial expression indicating pain „ Refuses to eat and drink „ Is restless „ Has a facial expression indicating pain „ Refuses to wear dentures „ Throws dentures on the floor z Make food appealing: use different textures, flavours, smells, tastes, sounds and colours that the person enjoys z Eat with the family, rather than alone z Play soft music that they like during mealtime z Increase physical activities that they can do during the day z Ask whether the person is in pain z Ask them to point out the area of pain z Check whether there are loose teeth, mouth ulcers, etc. z Seek help from a doctor or dentist z See above for toothache z Check that the dentures are in good condition and fit properly Health conditions Common health conditions can affect eating and drinking. The activity below teaches you how to improve these conditions, if they are present. 2. Activity Le ss on 1 . E at in g an d dr in ki ng - m or e p lea sa nt m ea lti m es MODULE 4 iS u p p o rt In te rv e n ti o n M an u al 113 Diarrhoea Side effects from medications Does not have bowel movement for more than 7 days „ Liquid faeces „ Increased number of bowel movements „ Incontinency and difficulty controlling bowel movements „ Nausea, vomiting, liquid faeces or constipation „ Does not want to have a meal „ Eats only small amounts of food „ Hard and dry faeces „ Difficulty passing faeces/straining „ Having a feeling of incomplete bowel movements „ Becomes anxious or agitated „ Hard stomach „ Nausea and vomiting z Seek help from a doctor z Seek help from a doctor z Seek help from a doctor z Upon resolution of the problem: { Increase fibre in diet { Increase drinking of fluids { Increase physical activity Body pain „ Refuses to eat and drink „ Is restless „ Unusual body postures „ Has a facial expression of pain z Ask whether the person is in pain z Ask them to point out the area of pain z Seek help from a doctor Health condition Changes that you may have observed Recommended actions you may try 2. Activity Le ss on 1 . E at in g an d dr in ki ng - m or e p lea sa nt m ea lti m es MODULE 4 iS u p p o rt In te rv e n ti o n M an u al 114 Weight loss Weight gain Depression „ Forgets to eat „ Eats smaller amounts of food „ Eats regular amounts of food but still loses weight „ Eats all the food that is served „ Eats more snacks than before because they forget that they already ate „ Is obsessed with food „ Refuses to eat or says they are not hungry „ Eats small amounts of food „ Has no interest in food z Increase the amount of food z Provide foods that they will like z Increase flavourful foods as the person’s taste might be impaired z Seek advice from a doctor z Model eating and drinking z (i.e. eat and drink with the person) z Serve smaller portions z Remove the plate when the person indicates that they are full z Provide low calorie snacks z Seek help from a doctor Memory loss; forgets to eat or drink „ Asks when the next meal is even if it already happened „ The person says that they are hungry even if they already ate z Remind the person to eat and drink regularly z Model eating and drinking (i.e. eat and drink with the person) z Provide snacks between meal times Health condition Changes that you may have observed Recommended actions you may try 2. Activity Le ss on 1 . E at in g an d dr in ki ng - m or e p lea sa nt m ea lti m es MODULE 4 iS u p p o rt In te rv e n ti o n M an u al 115 4. Preventing dehydration People living with dementia have a higher risk of being dehydrated. There can be several reasons for this: z inability to explain their needs; z decreased thirst sensation; z not offered enough to drink; and, z swallowing problems in the late stage of dementia. The person you care for needs to be encouraged to drink 8-10 glasses (1500-2000 millilitres) of fluid (water, iced lollies, soup and juice, not including tea or coffee every day. Severe dehydration Ben has Alzheimer’s disease, but he is able to eat and drink without assistance from his wife, Mary. Ben likes to walk a lot. One hot afternoon, Mary also notices that Ben seems very tired, walks very slowly and then collapses on the floor. Ben is sent to the local hospital’s Emergency Department and is diagnosed with dehydration. After treatment in the hospital, Ben has recovered and is able to go home again. How would you advise Mary to deal with the situation after Ben is discharged home? Please select all the responses that you feel are appropriate. „ Mary needs to let Ben make the decision about when to drink. „ Mary needs to ensure that Ben drinks 8-10 glasses of water during the day. „ Mary records the time and the amount of fluid Ben actually consumes. 3. Check your understanding Severe dehydration. MODULE 4 Le ss on 1 . E at in g an d dr in ki ng - m or e p lea sa nt m ea lti m es iS u p p o rt In te rv e n ti o n M an u al 116 Timetable for eating and drinking The timetable below is for you to remind the person living with dementia to eat and drink. Give them the opportunity to choose what to drink. Time of day Type of fluid (e.g. water) Amount of fluid (e.g. 3 glasses) Morning - Noon Noon - Dinnertime Dinnertime - Bedtime 3. Activity WARNING! If the person you care for is not allowed fluids due to a heart condition, you need to follow the doctor’s order regarding how much to drink. MODULE 4 Le ss on 1 . E at in g an d dr in ki ng - m or e p lea sa nt m ea lti m es iS u p p o rt In te rv e n ti o n M an u al 117 Let’s review what you have learned z The person you care for needs to be encouraged and supported to eat and drink. z You can engage the person you care for in a variety of mealtime activities to create a pleasant mealtime for them, which helps to improve self-worth and a feeling of achievement. z Eating and drinking can be facilitated by modifying food, utensils and the environment. z You can maintain good eating and drinking for the person you care for by improving their health condition. Seeking assistance from health professionals might be necessary. z To help prevent dehydration, it is important to prompt the person living with dementia to drink. z Record and monitor the amount of fluid they consume. MODULE 4 Le ss on 1 . E at in g an d dr in ki ng - m or e p lea sa nt m ea lti m es You finished this lesson, well done! iS u p p o rt In te rv e n ti o n M an u al 118 iS u p p o rt In te rv e n ti o n M an u al How could Siya’s family deal with the situation? 8 Bring Siya dinner in her room. This is not helpful because it might further isolate Siya from her family. Siya may not feel welcome in the new home. She has lost her husband, her own home and now also her previous roles as cook and housekeeper. 8 Demand that Siya joins them for dinner. This is not such a good response because it may make Siya angry or cause her to further withdraw. 9 Siya’s family should let her help with the meal preparation and cleaning activities. This is a good response because her family knows Siya still enjoys cooking and should therefore support her to continue engaging in the activities that she likes and is still able to do. AN SW ER S - P RO VI DI NG E VE RY DA Y CA RE • Le ss on 1 1. Check your understanding Making mealtimes more pleasant. ANSWERS - PROVIDING EVERYDAY CARE Lesson 1. Eating and drinking - more pleasant mealtimes iS u p p o rt In te rv e n ti o n M an u al 119 iS u p p o rt In te rv e n ti o n M an u al 9 Buy adaptive eating and drinking aids from the shop for Shang. This is a good response because Shang’s son recognises that his father is no longer able to manage eating and drinking using the usual utensils. By providing other utensils he is trying to solve this problem. 8 Set up a separate table for his father to eat in his own bedroom, because spilling and dropping food may make the family irritated. This is not helpful because separation will make Shang feel sad or angry, which might prevent him from eating and drinking properly. 9 Organise a family meeting to ask all family members to think of more positive and constructive ways to respond to the situation at mealtimes. This is a good response because Shang’s son is trying to provide a positive mealtime atmosphere for everyone. 2. Check your understanding Promoting a good mealtime atmosphere. How could Shang’s son deal with the situation? AN SW ER S - P RO VI DI NG E VE RY DA Y CA RE • Le ss on 1 iS u p p o rt In te rv e n ti o n M an u al 120 iS u p p o rt In te rv e n ti o n M an u al How could Mary deal with this situation after Ben is discharged home? 8 Mary needs to let Ben make the decision about when to drink. This answer is not so good even though she is respecting Ben’s autonomy. Since people with dementia have decreased thirst sensation, it could be dangerous to leave it up to them whether to drink or not without reminding them. If not reminded, Ben may get dehydrated again and collapse. 9 Mary needs to ensure that Ben drinks 8-10 glasses of water during the day. This is a good response. Mary notices that Ben may forget to drink, so she is trying to help her husband drink enough water every day. 9 Mary records the time and the amount of fluid Ben actually consumes. This is a good response. It can be helpful to establish a routine and record the number of glasses Ben drinks from breakfast time to dinner time. Drinking after dinner time may potentially increase night time visits to the bathroom. 3. Check your understanding Severe dehydration. AN SW ER S - P RO VI DI NG E VE RY DA Y CA RE • Le ss on 1 iS u p p o rt In te rv e n ti o n M an u al 121 1. Improve eating and prevent weight loss In the late stages of dementia, a person living with dementia may experience difficulty chewing and swallowing. Reduced abilities to smell, taste and see may also happen due to ageing and dementia. These can have a negative impact on the person’s health. Depression and changes in eating patterns may also impair eating and digestion. Let’s look at an example Chiu has been living with dementia for 9 years and is cared for by her daughter, Ling. Recently, Ling notices that her mother sleeps during the day and is very difficult to wake and assist with her meals during the normal mealtimes. Ling believes that her mother is not hungry and does not want to disturb her sleep. A recent check-up showed that Chiu has lost 2.5 kg since the last check-up 5 weeks ago (5% of her body weight). Why is this lesson important? Dementia can affect eating and drinking in various ways depending on the stage of dementia and other health conditions. How will this lesson help me? By learning how to improve eating and drinking, prevent weight loss and promote drinking and eating safely. What will I learn? 1. Improve eating and prevent weight loss. 2. Help the person you care for to eat safely and prevent aspiration pneumonia. MODULE 4 Le ss on 2 . E at in g, d rin ki ng a nd p re ve nt in g he al th p ro bl em s Lesson 2. Eating, drinking and preventing health problems iS u p p o rt In te rv e n ti o n M an u al 122 What would you advise Ling to do to improve Chiu’s eating? Please select all the responses that you feel are appropriate. „ Be flexible to have meals when her mother is awake. „ In a diary, keep a record of what and how often her mother eats. „ Ensure Chiu has access to foods she enjoys eating. 2. Help the person you care for to eat safely and prevent aspiration pneumonia People with dementia may experience the problems listed below. z People with dementia may not be able to judge what can or cannot be eaten. They may eat inedible materials that are within reach when feeling hungry. Make sure to keep inedible materials and chemicals in safe places. z If the person is in the late stages of dementia, they may experience swallowing difficulties that can cause a lung infection called aspiration pneumonia. Aspiration pneumonia occurs when food is swallowed in the wrong way and goes into the person’s lungs instead of their stomach. This can then cause an infection. Eating, drinking and feeding methods may need to be modified to prevent this life-threatening problem. 1. Check your understanding How to improve eating and prevent weight loss. MODULE 4 Le ss on 2 . E at in g, d rin ki ng a nd p re ve nt in g he al th p ro bl em s iS u p p o rt In te rv e n ti o n M an u al 123 What do you think Ella should do? Please select all the responses that you feel are appropriate. „ Recognize that she needs to lock household chemicals, such as dishwashing soap, in a cabinet. „ Leave some inedible household materials in the places Oliver is able to reach, because she thinks Oliver should be taught that those cannot be eaten. MODULE 4 Le ss on 2 . E at in g, d rin ki ng a nd p re ve nt in g he al th p ro bl em s 2. Check your understanding Inedible materials. Inedible materials Oliver has been living with dementia for 10 years and is cared for by his wife, Ella. Ella starts to observe her husband closely during the day. Recently, Ella notices that the soaps she put in the kitchen and bathroom have disappeared. She also notices that her husband is eating the flowers that she puts on the dining table. She sees Oliver go to the kitchen and mistakenly pick up a soy sauce bottle and even a bottle of dishwashing detergent to drink. iS u p p o rt In te rv e n ti o n M an u al 124 What do you think Wei should do? Please select all the responses that you feel are appropriate. „ Learn how to make healthy, soft foods and thickened drinks for Lu. „ Not pay attention to how Lu is sitting when he helps her eat. A healthy soft diet can be made by hand without using an electric blender. Thickened fluids can be made by adding corn flour to water or other fluids while heating and stirring it, until it thickens. Note: commercial stir-in thickeners are available in the supermarket in many countries. MODULE 4 Le ss on 2 . E at in g, d rin ki ng a nd p re ve nt in g he al th p ro bl em s 3. Check your understanding Helping a person to eat safely. Tip Helping a person to eat safely Lu has been living with dementia for 10 years and is bedridden. Her husband, Wei, helps her to eat safely. Recently, he found Lu has difficulty swallowing soft foods that he makes for her. He also notices that she coughs when she drinks something. She seems to have a high temperature and is admitted to the hospital. Lu is diagnosed with aspiration pneumonia. After a month of treatment in the hospital, Lu has recovered and is discharged home. The doctor orders a healthy, soft diet and thickened drinks for Lu to consume at home to prevent future aspiration pneumonia. iS u p p o rt In te rv e n ti o n M an u al 125 You finished this lesson, well done! MODULE 4 Le ss on 2 . E at in g, d rin ki ng a nd p re ve nt in g he al th p ro bl em s Let’s review what you have learned z You can modify eating patterns for the person you care for to improve nutrition. z You can help the person living with dementia to eat and drink safely by keeping inedible materials and household chemicals in a safe place. z You can help prevent aspiration pneumonia by modifying the foods and drinks that they eat and positioning the person you care for in an upright position when helping them eat. iS u p p o rt In te rv e n ti o n M an u al 126 iS u p p o rt In te rv e n ti o n M an u al What would you advise Ling to do to improve Chiu’s eating? 9 Be flexible to have meals when her mother is awake. This is a good response. People in late stages of dementia need rest, so flexibility in planning meals will be very helpful when they are sleeping during normal mealtimes. 9 Keep a record of what and how often her mother eats in a diary. This is a good response. Recording what people with dementia eat is important. This way, carers will better understand when and what kind of food is needed for sufficient food intake. 9 Ensure Chiu has access to foods that she enjoys eating. This is a good response. What foods did she enjoy eating before her diagnosis of dementia? What foods does she seem to enjoy now? 1. Check your understanding How to improve eating and prevent weight loss. ANSWERS - PROVIDING EVERYDAY CARE Lesson 2. Eating, drinking and preventing health problems MODULE 4 AN SW ER S - P RO VI DI NG E VE RY DA Y CA RE • Le ss on 2 iS u p p o rt In te rv e n ti o n M an u al 127 iS u p p o rt In te rv e n ti o n M an u al What do you think Ella should do? 9 Recognize that she needs to lock household chemicals, such as dishwashing soap, in a cabinet. This is a good response. Keeping these dangerous things away will help protect the person living with dementia. 8 ✗Leave some inedible household materials in the places Oliver is able to reach because she thinks that Oliver should be taught that those cannot be eaten. This is not a good response. People in late stages of dementia can have a changed judgement of what they can or cannot eat. Keeping these dangerous things away from them is very important. How can Wei help Lu? 9 Learn how to make healthy, soft food and thickened drinks for Lu. This is a good response. Providing healthy, soft food and thickened drinks will make it easier for people in the late stage of dementia to continue to eat and drink on their own and maintain a healthy weight. 8 ✗Not pay attention to how Lu is sitting when they are helping her eat. This is not a good response. They should sit Lu in an upright position which will help her eat and drink better and prevent aspiration pneumonia. 2. Check your understanding Inedible materials. 3. Check your understanding Helping a person to eat safely. MODULE 4 AN SW ER S - E AT IN G, D RI NK IN G AN D PR EV EN TI NG H EA LT H PR OB LE M S • L es so n 2 iS u p p o rt In te rv e n ti o n M an u al 128 1. Possible solutions for problems such as urinating on the floor or losing bladder control Urinating on the floor Dementia can affect a person’s ability to find their way to the bathroom and identify the toilet and/or toilet seat. You should not blame the person living with dementia for this behaviour, nor punish them as this type of response will cause them and yourself stress. Modifying your house may help them use the bathroom. Why is this lesson important? Poor toileting and incontinence may lead to infections and other health problems, low self-esteem and withdrawal from social activities for a person living with dementia. How will this lesson help me? This lesson will help you think about the health concerns, and assist the person you care for with using the toilet and continence. What will I learn? 1. Possible solutions for problems such as urinating on the floor or losing bladder control. 2. Using incontinence aids and equipment. MODULE 4 Le ss on 3 . T oi let in g an d co nt in en ce ca re Lesson 3. Toileting and continence care iS u p p o rt In te rv e n ti o n M an u al 129 Zhen is taking care of her husband, Fu, since he developed vascular dementia several years ago. Fu is able to go to the toilet himself without assistance, but recently, Zhen finds Fu urinating on the floor outside the toilet. Let’s look at an example Below are some tips in case the person you care for experiences difficulties using the toilet. z Put an image of a toilet on the toilet door to help them find it. z Provide directions to the toilet if they are unable to find it. z Provide adequate nightlights in the hallway between the bedroom and the toilet. z Use contrasting colours for the toilet seat. z Change the person’s trousers to some that are easier to remove. z Provide step-by-step instructions to the person if they forget how to use the toilet. What do you think is the right response for Zhen? Please select the correct answer. „ Make some simple changes to the environment and clothing, such as putting an image of a toilet on the bathroom door, using a contrasting colour for the toilet seat or changing Fu’s trousers to a pair of pants that does not need a belt. „ Tell her husband, Fu, that he is making trouble and punish him by not taking him for his daily walk in their neighbourhood. 1. Check your understanding Prevent urinating on the floor. Tip MODULE 4 Le ss on 3 . T oi let in g an d co nt in en ce ca re iS u p p o rt In te rv e n ti o n M an u al 130 Contributing factors Recommended solutions A long distance to go to the toilet in the house Public toilet that is at a distance from the house Not being able to find the toilet Not enough colour contrast of the toilet seat Not enough lighting in the hallway Not enough lighting in the toilet z Direct the person you care for to the toilet z Provide a bedside commode at night z Use nightlights in the bedroom and the house z Provide a commode for them to use in the house z Put a picture of a toilet on the toilet door z Replace the toilet seat with a different colour to increase the contrast z Provide adequate lighting in the hallway z Provide adequate lighting in the toilet What other factors may contribute to urinating on the floor or losing bladder control? Le ss on 3 . T oi let in g an d co nt in en ce ca re iS u p p o rt In te rv e n ti o n M an u al 131 Contributing factors Recommended solutions Narrow toilet doors that do not allow the walker or wheelchair to pass Visual impairment Unable to undo trousers Forgetting what to do in the toilet z Modify the door opening to allow a walker or wheelchair to pass z Direct the person you care for to the toilet during the day z Provide a bedside commode at night z Change trousers to ones that are easily undone and removed z Assist the person you care for to pull on and do up trousers z Remind the person you care for of the activities they need to do z Provide step-by-step instructions for them to use the toilet Le ss on 3 . T oi let in g an d co nt in en ce ca re iS u p p o rt In te rv e n ti o n M an u al 132 What do you think is the right response for Joshua? Please select the correct answer. „ Since this is an embarrassing situation for Joshua, he should stop taking his mother shopping. „ Joshua should try to make sure that his mother uses the toilet before leaving to go shopping. MODULE 4 Le ss on 3 . T oi let in g an d co nt in en ce ca re 2. Check your understanding Dealing with losing bladder control. Urinating in public places Dementia affects the person’s ability to explain their needs, for example needing to go to the bathroom. Additionally, dementia can affect a person’s judgement of what is normal or not in public. You could help prevent these accidents (incontinence) by maintaining a regular, daily schedule to assist the person you care for to go to the toilet. Identifying how often they used the toilet before they had dementia might be helpful. You can also identify whether the person you care for needs to go to the bathroom by the way they behave, e.g. if they become agitated, stressed, anxious or restless. Let’s look at an example Joshua is taking care of his mother Esther, who received a diagnosis of dementia 5 years ago. Joshua usually takes his mother shopping in the neighbourhood as she enjoys meeting people. Recently, Joshua notices that his mother has lost bladder control during the day. iS u p p o rt In te rv e n ti o n M an u al 133 06:00-09:00 09:00-12:00 12:00-15:00 15:00-18:00 18:00-21:00 21:00-00:00 0:00-03:00 03:00-06:00 Time Number of trips to the toilet Number of times lost control of bladder or bowel What possible causes did you observe? Toilet use diary Date: To improve bladder or bowel control, it may help to fill out a toilet diary. Le ss on 3 . T oi let in g an d co nt in en ce ca re iS u p p o rt In te rv e n ti o n M an u al 134 There are numerous disposable and/or washable incontinence aids, pads and equipment. When selecting products, you should consider their cost, effectiveness, comfort and convenience. For bedridden males, using urinals to collect urine may help. Some of these urinals are designed to prevent the backward leaking of urine. In the late stages of dementia, the person living with dementia may not be able to control their bladder and bowel movements. Before using any incontinence aids and equipment, you should ask a health professional to help identify the cause(s) of incontinence, as these may be treatable and therefore reversible. Tip MODULE 4 Le ss on 3 . T oi let in g an d co nt in en ce ca re 2. Using incontinence aids and equipment iS u p p o rt In te rv e n ti o n M an u al 135 Let’s look at an example Gloria is in a late stage of Alzheimer’s disease and is living with her son’s family. Her daughter-in-law, Marina, is taking care of her. Since Gloria cannot control her bladder or bowel movement, the doctor suggests that Marina try incontinence pads for Gloria. In the beginning, Marina encounters a number of problems: z Gloria constantly takes the pad off and throws it on the floor. z Gloria still has wet pants even when using incontinence pads. z Gloria has skin problems in her genital area. MODULE 4 Le ss on 3 . T oi let in g an d co nt in en ce ca re 3. Check your understanding Use of personal hygiene products. What do you think is the right response for Gloria? Please select the correct answer. „ Marina should force Gloria to wear the pad. „ Marina should remind her mother-in-law to use the bathroom at scheduled times if she is not doing so herself. iS u p p o rt In te rv e n ti o n M an u al 136 Tip Constantly taking the pad off and throwing it on the floor Still having wet pants even while using the incontinence pads Having sore or irritated skin in the genital area Having fever, being in pain, strong smelling urine z Feeling uncomfortable with the pad z The pad size is wrong z The pad is wet and needs to be changed z Check whether the pad size is correct z Change the wet pad on time z Consult the doctor regarding the person’s behaviour z Use the right size and type of pad z Maintain scheduled trips to the toilet to minimize the use of pads z Select suitable pad size and type z Change the soiled pad on time and maintain hygiene around genital area z Apply protective creams or lotions that maintain healthy skin z See the doctor z Maintain an intake of 6-8 glasses of water or juice per day except if the person is under fluid or dietary restriction z Maintain good genital care z The pad size is incorrect z The schedule for using the toilet has not been maintained z Incontinence pads can cause skin breakdown z Unsuitable pad size and delaying changes of soiled pads in a timely manner can cause skin infection z Urinary tract infections are triggered by a number of factors, including incontinence and poor genital care Below are some tips for incontinence care. Problems Possible causes Recommended solutions Le ss on 3 . T oi let in g an d co nt in en ce ca re iS u p p o rt In te rv e n ti o n M an u al 137 Let’s review what you have learned z Do not blame the person after any accidents, such as urinating on the floor. z Modify the environment to reduce the chance of bladder and bowel accidents (for example, put a picture of a toilet on the bathroom door). z Take the person living with dementia to the toilet regularly to reduce accidents. z The frequency of toilet visits will need to be established based on the toilet pattern that the person living with dementia had before the onset of dementia. z If these changes do not help, incontinence aids and equipment may help. z Be aware that the use of incontinence aids can irritate the skin if used incorrectly. z Maintain good genital care to reduce the risk of a urinary tract infection. z If the person living with dementia is not under fluid restriction, encourage them to drink 6-8 glasses of water or juice per day to help prevent urinary tract infections. MODULE 4 Le ss on 3 . T oi let in g an d co nt in en ce ca re You finished this lesson, well done! For more tips on how to stay in control of your feelings please refer back to Lesson 3.Thinking differently in Module 3. Tip iS u p p o rt In te rv e n ti o n M an u al 138 iS u p p o rt In te rv e n ti o n M an u al 9 Make some simple changes to the environment and clothing, such as putting an image of a toilet on the bathroom door, using a contrasting colour for the toilet seat or changing Fu’s trousers to a pair of pants that doesn’t need a belt. This is the best answer. People with dementia may have difficulties finding and using the toilet, so these changes could help Fu. What do you think is the right response for Zhen? 8 Tell her husband that he is making trouble and punish him by not taking him for his daily walk in their neighbourhood. This is not a good answer. You should never threaten people with dementia in this way. Fu will feel ashamed and embarrassed and this response could cause him to become upset. 1. Check your understanding Prevent urinating on the floor. ANSWERS - PROVIDING EVERYDAY CARE Lesson 3. Toileting and continence care MODULE 4 AN SW ER S - P RO VI DI NG E VE RY DA Y CA RE • Le ss on 3 iS u p p o rt In te rv e n ti o n M an u al 139 iS u p p o rt In te rv e n ti o n M an u al 8 ✗Since this is an embarrassing situation for Joshua, he should stop taking his mother shopping. This is not the best response because his mother will miss out on a very important pleasant activity. What do you think is the right response for Joshua? 9 Joshua should try to make sure that his mother uses the toilet before leaving to go shopping This is a good response. It is a good way to help prevent Esther from losing bladder control. 8 Marina should force Gloria to have the pad on. This is not the right answer! It’s very important to check why a person living with dementia may feel uncomfortable with the pad. Is the size wrong? Is the pad wet and does it need to be changed? What do you think is the right response for Marina? 9 Marina should remind her mother-in-law to use the toilet at scheduled times if she is not doing so herself. This is the best answer. Scheduled toilet visits may help minimise incontinence and the need for pads. 2. Check your understanding Dealing with losing bladder control. 3. Check your understanding Use of personal hygiene products. AN SW ER S - P RO VI DI NG E VE RY DA Y CA RE • Le ss on 3 iS u p p o rt In te rv e n ti o n M an u al 140 1. Modifying the environment to make personal care easier There are different reasons for not being able to perform personal care. One reason is that people with dementia may not find the things that they need for personal care. For example, when you cannot find your toothbrush and toothpaste due to memory loss, it will be difficult to brush your teeth. However, you can modify the environment to make it easier for them to find things that are needed for personal care. Why is this lesson important? Dementia affects people’s ability to maintain personal care, for example brushing teeth, showering/bathing and grooming. Therefore, assistance with maintaining good personal care is very important. Poor personal care may lead to infections and other health problems, low self-esteem and withdrawal from social activities for people with dementia. How will this lesson help me? This lesson will help you think about the health concerns of the person you care for and assist them with personal care. What will I learn? 1. Modifying the environment to make personal care easier. 2. Tips for daily dressing, oral care and assisting in bathing. MODULE 4 Le ss on 4 . P er so na l c ar e Lesson 4. Personal care iS u p p o rt In te rv e n ti o n M an u al 141 What would you think is the right response for Mohammed? Please select the correct answer. „ Put personal care items in the order of use and label them with large print words and different colours for Mariam to read. „ Ask their daughter-in-law to take Mariam from the table to the bathing room and assist her with washing and changing clothes. Let’s look at an example Mariam has Alzheimer’s disease, but she is able to care for herself without assistance from family members. Recently, her husband, Mohammed, notices that she sits at the table for breakfast in a nightgown without having washed her face, brushed her hair, or doing her make-up as she usually does. There may be several reasons why Mariam may not undertake personal care before breakfast anymore. One of them is that she may be depressed. For more information on depression please see Lesson 4. Depression, anxiety or apathy in Module 5. Below are some tips that may help people with dementia find items or places, and to do personal care activities independently. z To find the bathroom or toilet: put a picture or words on the bathroom door or direct the person to the bathroom. z To find personal care materials: make items easy to see in the bathroom, label items with their name, use pictures or words on the bathroom wall to point out items, use contrasting colours. z To help turn the tap on and off: use colour indicators to label the direction for turning the tap on and off, instruct the person to turn the tap on and turn off, assist if needed. MODULE 4 Le ss on 4 . P er so na l c ar e 1. Check your understanding Promoting personal hygiene. Tip iS u p p o rt In te rv e n ti o n M an u al 142 2. Tips for daily dressing, oral care and assisting in bathing Difficulties choosing the right clothes or dressing appropriately Dementia can affect the person’s ability to choose clothes and dress appropriately. You can assist the person you care for to choose clothes and to dress in a way that makes the most use of their remaining skills. You should not take over these tasks when the person living with dementia can still perform them. What would you think is the right response for Jane? Please select the correct answer. „ Tell Ted that he needs to be less messy, choose clothes for Ted and dress him. „ Remind Ted to lay out his clothes in the evening and encourage him to wear pants that do not need a belt and shoes that do not need laces. Let’s look at an example Ted has Alzheimer’s disease and is cared for by his wife Jane. Ted used to lay out his clothes for the next day in the evening. Recently, Jane found that Ted forgets to do this and is inclined to wear the same clothes every day. Jane also observes that Ted leaves some buttons of his shirt undone, his belt unbuckled and forgets to lace up his shoes. MODULE 4 Le ss on 4 . P er so na l c ar e 2. Check your understanding Getting dressed. iS u p p o rt In te rv e n ti o n M an u al 143 Difficulties brushing one’s teeth Dementia not only affects memory but also organization, coordination and concentration, which are required to perform mouth care. Poor mouth care is associated with poor appetite, bad breath, infections of the teeth or gums and other health problems. The goal of assisting with mouth care is to help the person make the most use of their remaining skills. What would you think is the right response for Lingling? Please select the correct answer. „ Put Guoliang’s dentures into his mouth without asking. „ Instruct her husband how to brush his teeth step-by-step and praise him when he is doing well. Let’s look at an example Guoliang has Alzheimer’s disease but is able to brush his teeth without assistance. Recently, Guoliang’s wife, Lingling notices that her husband makes a big mess in the bathroom with water and toothpaste on the countertop and the floor. She also observes that her husband is unable to brush his teeth in the order that he usually does and can’t insert his artificial dentures himself. MODULE 4 Le ss on 4 . P er so na l c ar e 3. Check your understanding Promoting mouth care. iS u p p o rt In te rv e n ti o n M an u al 144 Please select any mouth care steps that the person you care for needs help with from the list below. „ Putting toothpaste on the toothbrush „ Brushing teeth in an order that will clean teeth and gums „ Rinsing and cleaning mouth „ Using floss or toothpick to clean between teeth daily „ Applying balm to moisturize lips when needed „ Checking for signs of mouth infections or toothache when needed „ Removing, washing, cleaning, and storing artificial dentures if needed 1. Activity MODULE 4 Le ss on 4 . P er so na l c ar e iS u p p o rt In te rv e n ti o n M an u al 145 Difficulties performing personal care and bathing Dementia may also affect the person’s ability to wash their hair and take a shower or a bath. A person living with dementia may view assistance with personal care as a threat to his or her privacy, safety and security, and may refuse or resist any help. Let’s look at an example Feng has Alzheimer’s disease and is cared for by his wife Yuan. Due to her age, Yuan is not strong enough to help bathe Feng anymore, so the family decides that the three sons-in-law could take turns to help with Feng’s weekly bath. The oldest son-in-law is very kind to Feng and reassures him that he will make him comfortable during the bath. He takes Feng to the bathroom and starts to undress him. Feng suddenly pushes him away, shouts at him and tells him to go away. MODULE 4 Le ss on 4 . P er so na l c ar e 4. Check your understanding Resisting help with bathing. What would you think is the right response for Feng’s family? Please select the correct answer. „ Since the family notices that Feng thought his son-in- law was a stranger, Yuan decides to be with Feng while her son-in-law bathes him. „ They should say to Feng that he should be grateful for the help he receives and if he continues to behave this way, he will be sent to a long-term care facility. iS u p p o rt In te rv e n ti o n M an u al 146 People with dementia may show resistance during personal care, or even become aggressive like Feng in this example. To read more about how to prevent or deal with aggression, please refer to Lesson 3. Aggression in Module 5. Below are some tips for assisting with bathing. z Identify the times of day that the person you care for prefers to have a bath/shower. z Switch from a shower/bath to a sponge bath. (Note: bath tubs are particularly difficult as they may lead to falls and it may be hard for the carer to lift the person living with dementia out of the tub.) z If using the shower or bathtub, use a non-slip bath or shower mat to help prevent falls. z Adaptive seating or equipment, such as grab bars and shower chairs, may help. z For people with dementia who are afraid of water, try to reduce the water flow. Tip MODULE 4 Le ss on 4 . P er so na l c ar e When assisting with personal care, ask the person living with dementia for their preferences whenever possible and respect their choice. Reassure them that they are safe and comfortable. iS u p p o rt In te rv e n ti o n M an u al 147 Select any personal care activities that the person living with dementia needs help with. Coach them through the individual steps involved in each activity. „ Selecting daytime clothing „ Undressing before shower/bath „ Taking pyjamas off/on „ Shaving „ Washing and drying face „ Applying body lotion to moisturize skin „ Drying body after washing „ Combing hair „ Preparing for a shower/bath „ Putting on make-up „ Putting non-slip mats on the floor „ Washing hair/body during shower/bath „ Washing and drying hands „ Using towel to dry hair/body „ Washing and drying genital areas „ Dressing after shower/bath „ Washing and drying feet „ Checking for signs of skin problems „ Changing night clothing into daytime clothing „ Using electrical hairdryer „ Turning the tap on, adjusting the water temperature and preparing for bathing „ Cutting fingernails and toenails when needed MODULE 4 Le ss on 4 . P er so na l c ar e 2. Activity iS u p p o rt In te rv e n ti o n M an u al 148 Let’s review what you have learned z Engage the person living with dementia in personal and mouth care as long as possible, using remaining skills. z Modify the environment, for example by providing guidance, encouraging them to select different types of clothes or providing seating while performing personal care. z Engage the person you care for in daily decision making, for example what clothes they would like to wear. z Keep in mind that not have enough assistance with personal care may cause agitation or aggression. z Be compassionate and try to understand why they resist being assisted with personal care. You finished this lesson, well done! MODULE 4 Le ss on 4 . P er so na l c ar e iS u p p o rt In te rv e n ti o n M an u al 149 iS u p p o rt In te rv e n ti o n M an u al 9 Put personal care items in the order of use and label them with large print words and different colours for Mariam to read. This is a good response. People with dementia may lose the ability to find items that are not obvious. Creating an ‘easy to find’ environment for them is very important. What do you think is the right response for Mohammed? 8 Ask their daughter-in-law to take Mariam from the table to the bathing room and assist her with washing and changing clothes. This is not the right answer. Mohammed needs to first find out what the reason is for her not doing the personal care before breakfast anymore. Also, instead of assuming, Mohammed needs to ask his wife first if she wants help from their daughter-in- law. Not asking may upset her. ANSWERS - PROVIDING EVERYDAY CARE Lesson 4. Personal care MODULE 4 AN SW ER S - P RO VI DI NG E VE RY DA Y CA RE • Le ss on 4 1. Check your understanding Promoting personal hygiene. iS u p p o rt In te rv e n ti o n M an u al 150 iS u p p o rt In te rv e n ti o n M an u al What do you think is the right response for Jane? 8 Tell Ted that he needs to be less messy, choose clothes for Ted and dress him. This answer is not helpful. It is not Ted’s fault that he is finding this task challenging. With some extra help, Ted may still be able to dress himself. 9 Remind Ted to lay out his clothes in the evening and encourage him to wear pants that do not need a belt and shoes that do not need laces. You are right! It will enable Ted to dress himself, which may also help improve his sense of self-worth. 8 Put Guoliang’s dentures in his mouth without asking. This is not the right answer. Lingling is completely taking over care tasks and not even asking his permission. This response may upset Guoliang. 9 Instruct Guoliang how to brush his teeth in a step-by- step manner and praise him when he is doing well. This is the best answer. Guoliang maintains a level of independence in this way, which may also help to improve his sense of self-worth. MODULE 4 AN SW ER S - P RO VI DI NG E VE RY DA Y CA RE • Le ss on 4 2. Check your understanding Getting dressed. 3. Check your understanding Promoting mouth care. What do you think is the right response for Lingling? iS u p p o rt In te rv e n ti o n M an u al 151 iS u p p o rt In te rv e n ti o n M an u al 9 Since the family notices that Feng thinks that his son-in-law is a stranger, Yuan decides to be with Feng while her son-in-law bathes him. Good advice! A person living with dementia may no longer recognize people they used to know, so giving them plenty of transition time to get familiar with people is very important. MODULE 4 AN SW ER S - P RO VI DI NG E VE RY DA Y CA RE • Le ss on 4 4. Check your understanding Resisting help with bathing. 8 They should say to Feng that he should be grateful for the help that he receives and if he continues to behave in this way, he will be sent to a long-term care facility. This is bad advice. Never threaten people with dementia in this way. Saying things like this will not help the situation and will make Feng feel very distressed. What do you think is the right response for Feng’s family? iS u p p o rt In te rv e n ti o n M an u al 152 1. Establishing routines for the person with dementia during the day When someone is living with dementia, it is important to create an environment that supports them to do the things that they like to do. This is also true for you. It is important to try and maintain routines and activities that are familiar to the person living with dementia, and to adapt them as their abilities change. Why is this lesson important? It is important to maintain routines and activities that are familiar to a person living with dementia to help create an enjoyable day. How will this lesson help me? By learning how to adapt routines and activities as the abilities of the person living with dementia change. What will I learn? 1. Establishing routines for the person with dementia during the day. 2. Adapting routines to the changing abilities of the person you care for. Lesson 5. An enjoyable day MODULE 4 Le ss on 5 . A n en jo ya bl e d ay iS u p p o rt In te rv e n ti o n M an u al 153 What is a routine? A routine is something that a person does every day or almost every day. It is important to try and continue the routine of the person living with dementia for as long as possible. This is reassuring and can reduce stress at home. Be aware of the person’s usual routine. If there has not been a routine, for example in the evening, then it is helpful to develop one and follow it regularly. This might include drinking a cup of tea, listening to soothing music, or saying prayers. It is helpful to have routines for other times of the day as well, such as immediately after getting up from bed in the morning, when having the midday meal or planning what to do in the afternoon. The simpler and easier these routines are to follow, the more likely they will reassure the person living with dementia and reduce stress at home. Morning time: starting the day It’s helpful to have a set time for waking up and then several things to do in sequence to get the day started. Think of bathing, brushing one’s teeth, getting dressed and then sitting down for breakfast. As dementia progresses, the person you care for will need help with each of these activities but one way to lower stress is to keep the basic routines as similar as possible. During the day, it’s also important to try and make time for activities that the person living with dementia enjoys, such as visiting a friend or another family member, going for a walk, reading, playing games, or listening to the radio. These activities will depend on the person’s prior interests and current abilities. In the early stages of dementia, your family member or friend may be able to do things that they like to do with minimal guidance. However, as the disease progresses, activities will need to be changed or modified so that they can still enjoy them. It’s important to be flexible and creative in figuring out the routines and then adapting them as needed over time. MODULE 4 Le ss on 5 . A n en jo ya bl e d ay iS u p p o rt In te rv e n ti o n M an u al 154 What suggestions do you have for Penny? Please select the correct answer from the responses below. „ If Penny suggests keeping to the routine by drinking tea first, it is likely that Martha will go for a walk afterwards. „ Penny should ask Martha what activities she is used to and in what order she would like to do them. „ Penny should force Martha to go for a walk because it was advised by the doctor. It is important to keep routines (something the person living with dementia does every day or almost every day) for as long as possible. This may help to avoid confusion, agitation, restlessness and boredom. It also helps to honour the person’s dignity. Think for a moment about how you might feel if your routines were changed or planned by another person. MODULE 4 Le ss on 5 . A n en jo ya bl e d ay 1. Check your understanding Morning routines. Keep in Mind Let’s look at an example Martha has dementia and is used to drinking tea immediately after getting ready in the morning. Her daughter Penny really wants to encourage her mother to walk every day, as recommended by her doctor. Penny is not aware of her mother’s usual routine, so when she tries to get Martha to go for a walk right after breakfast, Martha refuses. iS u p p o rt In te rv e n ti o n M an u al 155 z It is important to develop routines for morning activities and maintain them as long as possible. z Make adjustments as needed when the abilities of the person living with dementia change. 2. Adapting routines to the changing abilities of the person you care for It is important to adapt routines as the abilities of the person living with dementia change. Here are some common routines to establish during the day for a person living with dementia. In the morning Wake up at the same time every day z Adaptation: help might be needed to wake up because the person with dementia may not be able to set the alarm correctly. Have breakfast at a fixed time. In the earlier stages of dementia, your family member or friend might be able to make their own breakfast. z Adaptation: the person with dementia may need someone to lay out ingredients. Later on, they may need more help with preparing and eating breakfast. Performing grooming activities, such as brushing teeth, bathing/ cleaning, getting dressed. In the early stages, the person you care for may be able to do all of these activities without help. z Adaptation: items such as the toothbrush, toothpaste, etc. can be laid out in the bathroom in plain view to prompt the activity. In the later stages of dementia, it may be necessary for someone to do these activities for, or with, the person living with dementia. For more tips, please refer back to Lesson 4. Personal care in this module. MODULE 4 Le ss on 5 . A n en jo ya bl e d ay Keep in Mind iS u p p o rt In te rv e n ti o n M an u al 156 MODULE 4 Le ss on 5 . A n en jo ya bl e d ay What suggestions do you have for Penny? Please select the correct answer from the responses below. „ Penny should put away the baking and cooking pans and tell her mother that it’s just not possible to do this anymore. „ Penny should go shopping with her mother and buy easy to prepare cakes and cookies, “out of the box”, with limited added work to enable Martha to continue to do some cooking and baking. „ As Martha’s abilities change, Penny could plan some time during the afternoon to bake and cook with her mother. 2. Check your understanding Maintaining prior activities and interests during the day. Let’s look at an example Martha loves baking and used to prepare special cakes and cookies for family gatherings. Now that she has dementia, she sometimes forgets the ingredients and the order in which to put them in. At first, Martha uses a cookbook to help her continue baking but she finds this increasingly difficult. The cakes and cookies do not taste very good and have to be thrown away. Penny wants to help her mother keep up this activity. During the day It is helpful to plan activities that the person you care for enjoys doing, based on their prior interests and current abilities. iS u p p o rt In te rv e n ti o n M an u al 157 What suggestions do you have for Penny? Please select the correct answer from the responses below. „ Penny could ask another family member to help Martha. „ Penny could ask other people outside the family to walk with Martha to the community centre, such as a neighbour. „ Penny could tell her mother to do a quiet activity in the afternoons such as watching television or listening to the radio. It is important to respect the daily routines of the person you care for and maintain them for as long as possible. When this is no longer possible, adapt the routine to the best of your ability so that the key activities that are important to the person with dementia are maintained for as long as possible. MODULE 4 Le ss on 5 . A n en jo ya bl e d ay 3. Check your understanding Maintaining activities and interests outside the house. Keep in Mind What is sundowning? Sometimes people with dementia become more agitated, aggressive or confused in the late afternoon or early evening. This is often referred to as ‘sundowning’. It can be particularly distressing for carers. The exact cause of sundowning is not yet clear but a loss of routine might be one of the reasons. Try to give the person something meaningful to do at this time of day. Let’s look at an example Martha likes to go to a community centre every day from 12:00 until 15:00. She has lunch there and meets friends to do activities together. At first Martha walks there by herself but as her memory loss becomes more severe, she cannot find her way to the centre anymore. Penny asks another family member to take Martha to the centre and bring her back home. This works well for a while but eventually the family member is unable to take Martha. Penny does not know what to do since she cannot be with Martha every afternoon. iS u p p o rt In te rv e n ti o n M an u al 158 At bedtime z For the morning, afternoon and bedtime, establish and maintain routines for as long as possible, but be prepared to adapt these as the abilities of the person living with dementia change over time. z Printing out a list of daily routines can help. Do one for each day and put it up in a prominent place. MODULE 4 Le ss on 5 . A n en jo ya bl e d ay What suggestions do you have for Penny? Please select the correct answer from the responses below. „ Penny could read to Martha for 15 minutes before she goes to sleep. „ Penny should take the books out of Martha’s room. „ Penny should get some books that have more pictures than words or audiotapes for Martha. 4. Check your understanding Adapting routines. Tip At night, Martha is used to reading quietly for about 30 minutes before she goes to sleep. As her dementia progresses, she finds that she is no longer able to read. Sometimes she is just staring at her book. She increasingly finds reading confusing. Penny wants to adapt this routine to fit Martha’s current abilities. iS u p p o rt In te rv e n ti o n M an u al 159 Do you know any of the routines of the person with dementia that you care for? Please write down any ideas that you have about routines for the person you care for and how they can be adapted. MODULE 4 Le ss on 5 . A n en jo ya bl e d ay 1. Activity iS u p p o rt In te rv e n ti o n M an u al 160 You finished this lesson, well done! MODULE 4 Le ss on 5 . A n en jo ya bl e d ay Let’s review what you have learned z Establishing routines is important for people living with dementia. z Try to keep routines similar to the ones your family member or friend had before developing dementia. z Be prepared to adapt routines as necessary as the abilities of the person living with dementia change over time. iS u p p o rt In te rv e n ti o n M an u al 161 iS u p p o rt In te rv e n ti o n M an u al 9 If Penny suggests keeping to the routine by drinking tea first, it is likely that Martha will go for a walk afterwards. Right! It will help Martha keep her routine. 9 ✓Penny should ask Martha what activities she is used to and in what order she would like to do them. Indeed! Penny can learn Martha’s routines. However, this may only work if Martha is in the early or middle stages of dementia. Later on, Martha might not be able to remember her routines. 8 Penny should force Martha to go for a walk because it was advised by the doctor. This response is not so good because it may make Martha feel agitated and upset. 1. Check your understanding Morning routines. ANSWERS - PROVIDING EVERYDAY CARE Lesson 5. An enjoyable day MODULE 4 AN SW ER S - P RO VI DI NG E VE RY DA Y CA RE • Le ss on 5 What suggestions do you have for Penny? iS u p p o rt In te rv e n ti o n M an u al 162 iS u p p o rt In te rv e n ti o n M an u al 8 ✗Penny should put away the baking and cooking pans and tell her mother that it’s just not possible to do this anymore. This is not very helpful. Penny has not tried to come up with an alternative to help her mother and it may make Martha feel upset. 9 Penny should go shopping with her mother and buy easy to prepare cakes and cookies, “out of the box”, with limited added work to enable Martha to continue to do some cooking and baking. This is a good suggestion. It respects Martha’s routine but adapts the activity to her current abilities. 9 As Martha’s abilities change, Penny could plan some time during the afternoon to bake and cook with her mother. This is an excellent plan for the future! It allows Martha to continue her routine with support as needed. MODULE 4 AN SW ER S - P RO VI DI NG E VE RY DA Y CA RE • Le ss on 5 2. Check your understanding Maintaining activities and interests during the day. What suggestions do you have for Penny? iS u p p o rt In te rv e n ti o n M an u al 163 iS u p p o rt In te rv e n ti o n M an u al 9 Penny could ask another family member to help Martha. This is a good idea. If others can come on a regular basis, this is the best solution for Martha as it maintains her routine and adapts to Martha’s changing abilities. 9 Penny could ask other people outside the family to walk with Martha to the community center such as a neighbour. This is a good response. Family is not always available and sometimes other people don’t know how they can help. This is a concrete way that Penny could ask for help. 8 Penny could tell her mother to do a quiet activity in the afternoons like watching television or listening to the radio. This is not likely to be a good solution at this time. It isolates Martha from other people and doesn’t allow her to engage in the activities that she enjoys. It might be a better solution in the later stages of dementia, when Martha’s abilities change. MODULE 4 AN SW ER S - P RO VI DI NG E VE RY DA Y CA RE • Le ss on 5 3. Check your understanding Maintaining activities and interests outside the house. What suggestions do you have for Penny? iS u p p o rt In te rv e n ti o n M an u al 164 iS u p p o rt In te rv e n ti o n M an u al 9 Penny could read to Martha for 15 minutes before she goes to sleep. This is a good idea. It helps Martha to continue enjoying reading but adapts the activity to her abilities. 8 Penny should take the books out of Martha’s room. This is not a good response because it does not recognise how important reading is to Martha. Penny should recognise that her mother and her can still share this routine; it just needs to be adapted. 9 Penny should get some books that have more pictures than words or audiotapes for Martha. This is a helpful adaption for people in the later stages of dementia who liked to read but find that they are not able to read books with a lot of words. 4. Check your understanding Adapting routines. MODULE 4 AN SW ER S - P RO VI DI NG E VE RY DA Y CA RE • Le ss on 5 What suggestions do you have for Penny? M od ul e 5 . D ea lin g wi th b eh av io ur ch an ge s DEALING WITH BEHAVIOUR CHANGES Lesson 1. Introduction to behaviour changes Lesson 2. Memory loss Lesson 3. Aggression Lesson 4. Depression, anxiety or apathy Lesson 5. Difficulty sleeping Lesson 6. Delusions and hallucinations Lesson 7. Repetitive behaviour Lesson 8. Walking and getting lost Lesson 9. Changes in judgement Lesson 10. Putting it all together 5 MODULE iS u p p o rt In te rv e n ti o n M an u al 166 MODULE 5 Why is this lesson important? Dementia changes the way that people behave, think or act. This can be distressing or upsetting not only for the person with dementia, but also for their families and carers, like you. How will this lesson help me? This lesson helps to improve your skills to prevent and cope with behaviour changes. What will I learn? 1. Behaviour changes that may be particularly stressful. 2. Understanding the cycle of behaviour change. 3. Different approaches to respond to behaviour changes. Lesson 1. Introduction to behaviour changes 1. Behaviour changes that may be particularly stressful Dementia changes the way people behave, think or act. This not only affects the person living with dementia, but can also be distressing and upsetting for carers, like you. ”Any behaviour that gets you or the person you care for upset is stressful.” In this introduction you will learn: z How you can identify behaviours that are potentially upsetting, stressful or difficult for you and the person you care for. z How you might handle behaviour changes. z How you might change circumstances to reduce or prevent behaviour changes. Le ss on 1 . I nt ro du ct io n to b eh av io ur ch an ge s iS u p p o rt In te rv e n ti o n M an u al 167 MODULE 5 Does the person you care for ever experience any of the following behaviour changes? Please select any that apply. Forgetting or losing things, not being able to recall recent events or remember dates and days of the week. Talking or acting in a threatening way, or doing things that make you feel frightened. Feeling sad, worried, frightened, frustrated or angry, being unusually emotional, crying, agitated or restless, withdrawn, unhappy, apathetic or reacting slowly. Restless at night, waking you or other family members up. Misinterpreting the world, having fixed false beliefs, things a person sees or hears that are not there, or becomes suspicious of those around them. „ Memory loss „ Aggression „ Depression, anxiety or apathy „ Difficulty sleeping „ Delusions and hallucinations: seeing or hearing things that are not there Behaviour changes Example 1. Activity Le ss on 1 . I nt ro du ct io n to b eh av io ur ch an ge s iS u p p o rt In te rv e n ti o n M an u al 168 MODULE 5 Repeating a question or an action over and over. Continuously walking around, leaving the house and getting lost. Saying the wrong thing at the wrong time, acting inappropriately in a situation, not understanding own limitations. None of these symptoms are present at this point in time. „ Repetitive behaviour: doing things over and over „ Wandering: walking around a lot „ Changes in judgement „ Not at this time Behaviour changes Example 1. Activity Many things can cause behaviour changes that are upsetting to you or the person you care for. This can have a bad effect on your relationship with the person you care for. It can even make you feel sad, angry, confused, or anxious. In some instances, you might even feel as though you can’t cope with the situation. In this lesson you will learn what you can do to reduce or prevent these situations. Remember Le ss on 1 . I nt ro du ct io n to b eh av io ur ch an ge s iS u p p o rt In te rv e n ti o n M an u al 169 MODULE 5 Understanding any behaviour change and what happens before and after the behaviour is very important. Sometimes you can reduce or even prevent certain behaviours. If you pay attention and understand what happens before or “triggers” the behaviour, this can help you to reduce or prevent the behaviour. Let’s look at the following example Kayla has dementia like the person you care for. Her husband Howard is taking care of her, like you are caring for your family member or friend. Howard often asks Kayla if she can remember who came to visit last week or what she had for dinner yesterday. Kayla cannot remember these things and gets agitated. As a result, Howard feels frustrated. 2.Understanding the cycle of behaviour change “Howard is asking Kayla questions” “Howard feels frustrated” What happens before? Carer’s response to the behaviour Behaviour “Kayla can’t answer the questions and gets agitated” Le ss on 1 . I nt ro du ct io n to b eh av io ur ch an ge s The diagram below shows what’s happening. iS u p p o rt In te rv e n ti o n M an u al 170 MODULE 5 What happens before the behaviour? What do you think happens before Kayla gets agitated that you might be able to change? Below are some examples. 1. Howard asks questions that Kayla cannot answer. 2. The tone of voice that Howard uses to ask these questions makes Kayla feel nervous. Now you try the next one. Please fill in your ideas on what comes before Kayla gets agitated in the box below. When you are done, check the answer section at the end of this lesson for more ideas. 1. Check your understanding Identifying what happens before the behaviour. Le ss on 1 . I nt ro du ct io n to b eh av io ur ch an ge s iS u p p o rt In te rv e n ti o n M an u al 171 MODULE 5 2. Check your understanding Different ways of responding to behaviour change. Now let’s look at Howard’s response So, what are we trying to do? We are trying to separate what comes before the behaviour and what the carer’s response is after the behaviour. How does Howard respond in this example? Howard gets frustrated because his wife Kayla forgot who came to visit and what she had for dinner. Howard can choose to change his response. Here are some responses, some are good, others are not. Please check what you think could be good responses. Howard could: „ Show that he is frustrated. „ Take a deep breath. „ Show his irritation by saying: “I already answered that, please stop bothering me”. „ Remind himself that his wife has dementia and cannot help that she forgets things. She is not forgetting on purpose. „ Next time, remember that asking her such questions will only cause frustration, not only for him, but also for his wife. „ Work with Kayla to record significant family and social events in a family diary. Le ss on 1 . I nt ro du ct io n to b eh av io ur ch an ge s iS u p p o rt In te rv e n ti o n M an u al 172 MODULE 5 3. Different approaches work at different times. What if Howard’s approach doesn’t work the first time? Different approaches work at different times, so Howard should not give up! Howard could try several approaches until he finds one that works. Here are some examples of what Howard could do: z He can ask other people’s advice, for example his health care provider. z He can also ask someone at the Alzheimer’s Association (a community based organisation that provides support for people with dementia and their carers) in his country: https://www.alz.co.uk/associations. z He can search for information on the internet. Le ss on 1 . I nt ro du ct io n to b eh av io ur ch an ge s iS u p p o rt In te rv e n ti o n M an u al 173 MODULE 5 Now think about your own situation It is important to apply what you have just learned to your own situation with the person you care for. Use the spaces below, like a diary. 2. Activity What could you do to change what happened before the behaviour in order to reduce or prevent it? What is the behaviour that was the most distressing or upsetting to you in the past month? How could you respond in that situation? Le ss on 1 . I nt ro du ct io n to b eh av io ur ch an ge s iS u p p o rt In te rv e n ti o n M an u al 174 MODULE 5 Let’s review what you have learned z People with dementia may experience behaviour changes that are distressing or upsetting to them or those around them. z It is helpful to identify what happens before the stressful behaviour to understand what might cause it or make it worse. z It is also helpful to identify how you usually respond, what you feel or what you do. z Take a deep breath and think about the best ways to respond that will be the least distressing to you and the person you care for. z Try different responses and approaches, as the first one does not always work. z Seek professional help if you cannot manage a situation. You finished this lesson, well done! Le ss on 1 . I nt ro du ct io n to b eh av io ur ch an ge s iS u p p o rt In te rv e n ti o n M an u al MODULE 5 175 iS u p p o rt In te rv e n ti o n M an u al z Kayla has dementia. Remembering who came to visit last week is difficult for her. z Kayla has dementia and cannot remember what she had for dinner. 1. Check your understanding Identifying what happens before the behaviour. ANSWERS- DEALING WITH BEHAVIOUR CHANGES Lesson 1. Introduction to behaviour changes AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 1 iS u p p o rt In te rv e n ti o n M an u al MODULE 5 176 iS u p p o rt In te rv e n ti o n M an u al AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 1 8 Show that he is frustrated. This is not the best response. Showing that he is frustrated is an inappropriate way to deal with the stressful behaviour, it may even make the person living with dementia irritable. 9 ✓Take a deep breath. This is a good response. It shows that Howard is trying to control his frustration. 8 Show his irritation by saying: “I already answered that, please stop bothering me”. This reaction is not so good, because Howard’s irritability may upset Kayla even more. 9 ✓Remind himself that his wife has dementia and cannot help that she forgets things. She is not forgetting on purpose. This is a good response, because Howard recognises that Kayla is living with dementia. 9 Next time, remember that asking her such questions will only cause frustration, not only for him, but also for his wife. This is a good response, because it may prevent this frustrating situation. 9 Work with Kayla to record significant family and social events in a family diary. This is a good response, because they can revisit the events from time to time if Kayla is missing family members and friends. 2. Check your understanding Different ways of responding to behaviour change. What are some of the ways that Howard could respond? iS u p p o rt In te rv e n ti o n M an u al MODULE 5 177 Why is this lesson important? Memory loss can be frustrating for the person living with dementia and the carer. How will this lesson help me? In this lesson you will practice several ways to respond to memory loss, and find out what may help you deal with the person’s increasing forgetfulness. What will I learn? 1. What is memory loss? 2. How to respond to memory loss? Lesson 2. Memory loss 1. What is memory loss? People with dementia will increasingly lose their memory over time. In the beginning, they may forget recent events, where they put their keys, their wallet or a particular piece of paper. They find it harder to remember phone numbers, important dates and appointments. However, past memories, such as childhood memories, are often preserved for a longer period of time. Le ss on 2 . M em or y l os s iS u p p o rt In te rv e n ti o n M an u al MODULE 5 178 1. What is memory loss? People with dementia will increasingly lose their memory over time. In the beginning, they may forget recent events, where they put their keys, their wallet or a particular piece of paper. They find it harder to remember phone numbers, important dates and appointments. However, past memories, like childhood memories, are often preserved for a longer period of time. Do s t e person you care for som times forget things? If so, what kinds of things do they forget? Please write them down. 1. Activity Le ss on 2 . M em or y l os s iS u p p o rt In te rv e n ti o n M an u al MODULE 5 179 How would you advise Maya to deal with her mother’s memory loss? Please check all the responses that you feel are appropriate from the list below. „ Ask a neighbour to go with Anne once a week to the market to buy groceries. „ Create a memory aid together with Anne, e.g. a list of groceries that Anne needs to buy, and put the list in a place where it can be seen, so that it is easy to access. „ Go out and buy groceries immediately. „ Ask: “Mom, what’s wrong with you, there is no food in the house”. „ Sit down with Anne and make a list of groceries. Go shopping together. 1. Check your understanding Forgetting to buy groceries. 2. How to respond to memory loss? In this lesson you can practice several ways to respond to memory loss, and find out what may help you deal with it. Let’s have a look at an example Anne is living with dementia. She has a daughter named Maya. They live very close to each other. When Maya goes to visit Anne’s house, she notices that the fridge or cupboard is empty. Anne often forgets what she usually buys from the market. The person you care for might also forget other things. The same goes for Anne. Le ss on 2 . M em or y l os s iS u p p o rt In te rv e n ti o n M an u al MODULE 5 180 What do you think Maya’s response should be? Please check all the responses that you feel are appropriate from the list below. „ Tell her mother what to do over the phone. „ Ask her mother what she usually does on that given day. For example, Monday is wash day; Thursday is going to the market day. „ Move in with her mother. „ Go straight over and take charge of the situation, by ordering her mother around. „ Plan to visit Anne every weekend and write out to-do lists for every day of the week. „ Hire someone to stay with her mother all the time. „ Ask her mother while on the phone to get a pencil and paper. Talk through the plan for the day together. 2. Check your understanding Forgetting daily activities. Let’s look at another example Maya and Anne are talking on the phone. Maya notices that Anne often forgets what she normally does during the day. Maya is impatient with Anne, and tells her mother, “this is getting worse”. Le ss on 2 . M em or y l os s iS u p p o rt In te rv e n ti o n M an u al MODULE 5 181 How do you think Maya should respond to this situation? Please check all the responses that you feel are appropriate from the list below. „ Maya puts notes near the clock when her mother needs to take a pill. „ Maya says, “Mom, how could you forget your medications?”, and “you know you really need them to stay healthy!” „ Maya goes through the medicine cabinet, sits down and cries about her mother’s memory loss. „ Maya goes over the medications with her mom. She purchases a pill box, and puts the pills in the box at the right day and time and calls her mom every day to instruct her to take her medications. 3. Check your understanding Forgetting medication. Sometimes memory loss can be more serious, like in the next example. Let’s look at an example Maya comes to visit and discovers that Anne is having trouble remembering which medications to take and at what time.Le ss on 2 . M em or y l os s iS u p p o rt In te rv e n ti o n M an u al MODULE 5 182 Let’s look at your own situation It is important to apply what you have learned to your own situation. How could you respond to help the person you care for deal with their memory loss? Write down some ideas. 2. Activity Le ss on 2 . M em or y l os s iS u p p o rt In te rv e n ti o n M an u al MODULE 5 183 z Memory loss is very common for people with dementia. z Memory loss can be stressful to deal with. z In case of memory loss, try a memory aid like a note, pill- box, reminder/alarm, etc. z If possible, involve the person you care for to find the best way to support them in case of memory problems. z It is important to remember that the person living with dementia is not to blame, because he/she can’t help that they forget. z When one approach doesn’t work, try another one. z Realize there may be good and bad days. z Remind yourself that memory loss is part of the disease. z Take a deep breath and think about the best ways to respond that will be the least distressing to you and the person you care for in the case of memory loss. You finished this lesson, well done! Let’s review what you have learned Le ss on 2 . M em or y l os s iS u p p o rt In te rv e n ti o n M an u al MODULE 5 184 iS u p p o rt In te rv e n ti o n M an u al Relaxation exercise - Neck movements ANSWERS - DEALING WITH BEHAVIOUR CHANGES Lesson 2. Memory loss 9 Ask a neighbour to go with Anne once a week to the market to buy groceries. This might be helpful. Anne will have groceries and a nice visit with the neighbour. 9 ✓Create a memory aid together with Anne, e.g. a list of groceries that Anne needs to buy, and put it in a prominent place, so that the list is easy to access. This is a good response. It addresses Anne’s memory loss and may become a weekly shared pleasant activity. 8 Go out and buy groceries immediately. This answer is not so good because it is a panic reaction and a one-time solution. It does not solve the problem at hand. 8 Ask: “Mom, what’s wrong with you, there is no food in the house”. This answer is not so good because Anne cannot help that she forgets to buy food and may feel embarrassed that she has done something wrong. It does not improve the situation. 9 Sit down with Anne and make a list of groceries. Go shopping together. This answer may be a good one because Maya is addressing her mother’s needs. However, she might first want to try another approach. For example, with a list of groceries that her mother may still be able to go shopping without help. 1. Check your understanding Forgetting to buy groceries. AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 2 What would you advise Maya? iS u p p o rt In te rv e n ti o n M an u al MODULE 5 185 iS u p p o rt In te rv e n ti o n M an u al Relaxation exercise - Neck movements 8 Tell her mother what to do over the phone. This response is not so good because her mother may not understand or be able to follow a phone conversation. 9 Ask her mother what she usually does on that given day. For example, Monday is wash day; Thursday is going to the market day. This response may be a good one because Maya can use this information to remind her mother. 8 Move in with her mother. This is not the right response. There are several other less drastic approaches that Maya has not yet tried. 8 Go straight over and take charge of the situation, by ordering her mother around. This response is not so good because it is a one-time solution and does not solve the problem at hand. 9 Plan to visit Anne every weekend and write out to-do lists for every day of the week. This is a good response because it may help her mother to remember. 8 Hire someone to stay with mother all the time. This is not the right response. There are several less drastic approaches that Maya has not tried yet. 9 Ask her mother while on the phone to get a pencil and paper. Talk through the plan for the day together. This is a good response because it may help her mother to remember. Maya could call her mother every morning at a certain time, and ask her to get a pencil and paper and to plan her day together. 2. Check your understanding Forgetting daily activities. What do you think Maya’s response should be? AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 2 iS u p p o rt In te rv e n ti o n M an u al MODULE 5 186 iS u p p o rt In te rv e n ti o n M an u al Relaxation exercise - Neck movements 9 Maya puts notes near the clock when her mother needs to take a pill. This may be good to do because a memory aid could help Anne remember to take her pills. 8 Maya says, “Mom, how could you forget your medications?”, and “You know you really need them to stay healthy!” This response is not helpful because Anne cannot help that she forgets to take her medications. Memory loss is part of her disease. 8 Maya goes through the medicine cabinet, sits down and cries about her mother’s memory loss. This is not the way to deal with her mother’s memory loss. Getting upset will not solve her mother’s problem of forgetting to take medications. 9 Maya goes over the medications with her mom. She purchases a pill box, and puts the pills in the box at the right day and time and calls her mom every day to instruct her to take her medications. This is a good response because this memory aid might help Anne to take medications at the right day and time. Some pill reminder boxes come with alarms that are pre-set to remind the person to independently take their medications. 3. Check your understanding Forgetting medication. How should Maya respond? AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 2 iS u p p o rt In te rv e n ti o n M an u al MODULE 5 187 Why is this lesson important? From time to time, people with dementia may become angry, aggressive or violent. This is often one of the most difficult things to cope with for carers. How will this lesson help me? This lesson helps to understand possible causes of aggression and improve your skills to prevent or deal with aggression. What will I learn? 1. Why does aggression happen? 2. How to respond to aggressive behaviour? 3. How to deal with ongoing aggression? Lesson 3. Aggression 1. Why does aggression happen? From time to time, people with dementia may become angry, aggressive or violent. Aggression can happen for a variety of reasons. It can be due to unmet needs, illness such as a urinary tract infection, medication combinations or side effects, or something that is happening around the person with dementia. In addition, people with dementia may have difficulty understanding others, judging social situations, controlling their feelings or expressing themselves like they did before. They may also have personality or mental health changes that contribute to aggressive behaviours. At times, aggression is displayed towards people known to the person living with dementia. At other times it can be with strangers. Aggression is often one of the most difficult things to cope with for carers. Le ss on 3 . A gg re ss io n iS u p p o rt In te rv e n ti o n M an u al MODULE 5 188 Let’s look at your situation Check your answer, yes or no. Does the person you care for ever talk to you or other people in an aggressive way? „ Yes „ No Does the person you care for ever act aggressively towards you or other people? „ Yes „ No 1. Activity WARNING! If the person is suddenly behaving aggressively, there may be an underlying cause (for example a urinary infection) that should be investigated by a doctor. Le ss on 3 . A gg re ss io n iS u p p o rt In te rv e n ti o n M an u al MODULE 5 189 Do you remember the cycle of behaviour change? Just like we mentioned in Lesson 1. Introduction to behaviour changes, it is important to break down the cycle of stressful responses into three parts in order to help you deal with them. What happens before? Carer’s response to the behaviour Behaviour Here they are Le ss on 3 . A gg re ss io n iS u p p o rt In te rv e n ti o n M an u al MODULE 5 190 Neil wants to assist his father-in-law, Amit, in taking a bath because Amit needs to see a doctor. Neil says: “it is time for your bath”. Amit refuses. Neil has little time and tugs on his father-in-law’s arm. He says: “you need to bathe because you’re going to see the doctor.” Amit pulls his arm back and resists. He is much stronger than Neil. Neil tugs it again and says angrily: “you must take a bath because you are going to the doctor and need to be clean”. Amit gets very angry, shouts and even tries to shove Neil, who becomes upset. Amit angrily refuses to take a bath Can you break down the cycle of behaviour change in this example into its three parts? Please fill in the boxes below. What comes before the behaviour? What is the stressful behaviour? What is Neil’s response? 1. Check your understanding Understanding aggressive behaviour. Let’s see how the cycle works with a different example. Le ss on 3 . A gg re ss io n iS u p p o rt In te rv e n ti o n M an u al MODULE 5 191 „ Force his father-in-law to start bathing anyway. „ Maintain the dignity and privacy of his father-in-law. He could keep him in a robe or towel until he actually takes a bath. „ Play soothing music that Amit likes. „ Walk away and come back later. „ Explain logically why he should bathe. „ Put himself in Amit’s shoes and try to understand why Amit might not want to take a bath. 2. Check your understanding Responding to aggressive behaviour. 2. How to respond to aggressive behaviour? There are many ways to respond to aggressive behaviour. Some are good, others are not. In the exercise below you can learn more. How could Neil react differently? Please indicate what you think are good responses. Neil could: Le ss on 3 . A gg re ss io n iS u p p o rt In te rv e n ti o n M an u al MODULE 5 192 „ Make sure that there is enough time so that it is not so stressful. Rather than trying to bathe Amit right before the doctor’s appointment, when things are rushed, Neil might try to assist with bathing the day before. „ Before the next bath time, identify the best time of day for Amit to take a bath and find out whether he prefers a bath or a shower. „ When bathing Amit, keep a towel over his shoulders to help him maintain dignity and to keep him warm. „ Ask for someone else to help with Amit’s bath time. „ Help Amit with a bed bath by using warm, wet towels with soap without taking Amit to the bath. „ Say in an irritated voice: “I have already answered that, please stop bothering me.” “You must take a bath!” 2. Check your understanding (continued) Responding to aggressive behaviour. Le ss on 3 . A gg re ss io n iS u p p o rt In te rv e n ti o n M an u al MODULE 5 193 What could Neil do if his approach does not work the first time? Check all that apply. „ Neil could try several approaches until he finds one that works. „ Neil could get suggestions from others. 3. Check your understanding Ongoing aggressive behaviour. 3. How to deal with ongoing aggression? Sometimes your first approach may not work. Don't get discouraged, different responses may work at different times. Take a deep breath and think about the most positive ways to respond that will be the least distressing to you and the person you care for. Remind yourself that aggression can be a part of the dementia, or a reaction to the disease. Reminder Different responses may work at different times. Le ss on 3 . A gg re ss io n iS u p p o rt In te rv e n ti o n M an u al MODULE 5 194 Let’s look at your own situation It is important to apply what you have just learned to your own situation. Has the person that you care for ever been aggressive towards you? If so, describe the last time that this happened in the spaces below. 2. Activity What happened before the person you care for became aggressive? What could you do to change your response to this behaviour? What could change in the environment to make it more calming? Le ss on 3 . A gg re ss io n iS u p p o rt In te rv e n ti o n M an u al MODULE 5 195 z Aggression like shouting, shoving or pushing can happen to carers of people with dementia. z Aggression can be very upsetting for the person living with dementia as well as the carer. z Try to change the environment to make it more calming. z Try to maintain the dignity of the person living with dementia; do not force them to engage in activities that they do not wish to do. z If one approach does not work, try another one. z Realize that there may be worse, but also better moments. z Remind yourself that aggression can be a part of the dementia, or a reaction to the disease. z If the person is suddenly behaving aggressively, there may be an underlying cause (for example a urinary infection) that should be investigated by a doctor. z Take a deep breath and think about the most positive ways to respond that will be the least distressing to you and the person you care for. z If the person you care for continues to show aggression, there are many resources available on the internet. For example, look at the website of the Alzheimer Association in your country (www.alz.co.uk/associations). You finished this lesson, well done! Let’s review what you have learned Le ss on 3 . A gg re ss io n iS u p p o rt In te rv e n ti o n M an u al MODULE 5 196 iS u p p o rt In te rv e n ti o n M an u al Relaxation exercise - Neck movements ANSWERS - DEALING WITH BEHAVIOUR CHANGES Lesson 3. Aggression AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 3 Amit angrily refuses to take a bath Can you break down the cycle of behaviour change in this example into its three parts? Please fill in the boxes below. What comes before the behaviour? Neil tugs Amit’s arm and says angrily: “you must take a bath because you are going to the doctor and need to be clean”. Amit gets very upset and shouts and even tries to shove Neil. Neil becomes upset. What is the stressful behaviour? What is Neil’s response? 1. Check your understanding Understanding aggressive behaviour. iS u p p o rt In te rv e n ti o n M an u al MODULE 5 197 iS u p p o rt In te rv e n ti o n M an u al Relaxation exercise - Neck movements AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 3 8 Force his father-in-law to start bathing anyway. This is not helpful, because it does not change the situation and may only make it worse. 9 Maintain the dignity and privacy of his father-in-law. He could keep him in a robe or towel until he actually takes a bath. Correct. Maintaining dignity and privacy is always a good idea when caring for someone with dementia. By doing this Neil makes sure that the person living with dementia is comfortable. 9 Play soothing music that Amit likes. Yes. Though it may take extra time to arrange the music, this option may help sooth both Neil and Amit. This may create relaxation and less negative responses from both of them. 9 Walk away and come back later. This is a good response. It gives Neil time to calm down, take a deep breath and come up with a new strategy. It also gives Amit time to forget about the negative encounter and he may be in a better mood if approached differently later. 8 Explain logically why he should bathe. This answer is not so good. It does not take into account that Amit may not be able to understand because of his dementia. 2. Check your understanding Responding to aggressive behaviour. How could Neil react differently? Neil could: iS u p p o rt In te rv e n ti o n M an u al MODULE 5 198 iS u p p o rt In te rv e n ti o n M an u al Relaxation exercise - Neck movements AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 3 9 Make sure that there is enough time so that it is not so stressful. Rather than trying to bathe Amit right before the doctor’s appointment, when things are rushed, Neil might try to assist with bathing the day before. Though taking more time may not always be feasible, this option is good. It may reduce tension for Neil and Amit. 9 Before the next bath time, identify the best time of day for Amit to take a bath and find out whether he prefers a bath or shower. This answer is good. Keeping people with dementia to their regular routines shows attention to their preferences. 9 When bathing Amit, keep a towel over his shoulders to help him maintain dignity and to help keep him warm. This answer is good. Amit could be embarrassed to be naked in front of his son-in-law or the temperature of the water or the room could be too cold. It’s important to look for ways to make the situation more pleasant. 9 ✓Neil could ask for someone else to help with Amit’s bath time. This answer is good. Sometimes the person living with dementia is more comfortable with one family member helping them bathe than another. Sometimes even a stranger might find it easier as the person living with dementia might be less embarrassed than with a family member. 2. Check your understanding (continued) Responding to aggressive behaviour. iS u p p o rt In te rv e n ti o n M an u al MODULE 5 199 iS u p p o rt In te rv e n ti o n M an u al Relaxation exercise - Neck movements AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 3 9 Neil could help Amit with a bed bath by using warm, wet towels with soap without taking Amit to the bath. This answer is good. If the person living with dementia is afraid of the bath, or running water, this option will help relieve their distress and can sometimes be used instead of baths. There are also products such as dry shampoo and cleaning products used for young children that might help. 8 Say in an irritated voice: “I have already answered that, please stop bothering me.” “You must take a bath!” This is not helpful, because it does not change the situation. 2. Check your understanding (continued) Responding to aggressive behaviour. iS u p p o rt In te rv e n ti o n M an u al MODULE 5 200 iS u p p o rt In te rv e n ti o n M an u al Relaxation exercise - Neck movements AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 3 What could Neil do if his approach does not work the first time? 9 Neil could try several approaches until he finds one that works. 9 Neil could get suggestions from others. There may be other approaches that you could try. This can be information from people that you know or that is available on the Internet. See for example: http://www.alz.co.uk/ 3. Check your understanding Ongoing aggressive behaviour. iS u p p o rt In te rv e n ti o n M an u al MODULE 5 201 Why is this lesson important? Dementia may affect a person’s mood and interest in daily activities, people and events. How will this lesson help me? This lesson helps you to understand the possible causes of depression and anxiety, while improving your skills to prevent or reduce mood problems. What will I learn? 1. What are depression, anxiety and apathy? 2. How to respond when a person living with dementia is feeling depressed or anxious? 3. How to respond when a person living with dementia loses interest in daily activities? Lesson 4. Depression, anxiety and apathy 1. What are depression, anxiety and apathy? Depression, anxiety and apathy are common among people with dementia. Dementia may affect a person’s mood and interest in daily activities, people and events. This may be due to changes in the brain, but also to the emotional reaction of what is happening to them. People with dementia may feel sad, worried, frightened, frustrated or angry, may cry and be unusually emotional, agitated or restless. They may also be withdrawn, unhappy and react slowly. These are all behaviours of depression and apathy. Anxiety can lead to behaviours similar to depression. People with dementia can be worried about being left alone, who is handling their money, or where lost items have gone to and become anxious. Le ss on 4 . D ep re ss io n, an xie ty an d ap at hy iS u p p o rt In te rv e n ti o n M an u al MODULE 5 202 2. How to respond when a person living with dementia is feeling depressed or anxious? Let’s look at an example Juan has dementia and lives with his sister, Isabel. On several occasions Isabel has found Juan sitting in his favourite chair looking very sad, hunched over, and sometimes crying. Isabel tries to cheer him up. Unfortunately, everything that she tries does not seem to work. How should Isabel handle this situation? Below are some things that Isabel may do or say. Please select all responses that you think might work. „ Walk over to Juan and say in a calm, reassuring tone, “I have some ideas about how you can feel better, let’s talk. „ Say: “Juan, what’s the matter with you? I’m tired of seeing you like this. Just get up and do something.” „ Say: “men don’t cry and get sad, we used to have so much fun together.” „ Go over and touch Juan on the arm or shoulder. “I know that you feel bad, I do too. What we’re going through is really hard.” „ Sit with Juan and suggest that they do a pleasant activity together. „ Sigh and walk away, thinking that there is nothing that she can do. 1. Check your understanding Responding to a person with dementia who is feeling depressed. Le ss on 4 . D ep re ss io n, an xie ty an d ap at hy iS u p p o rt In te rv e n ti o n M an u al MODULE 5 203 Here is another example Emma has dementia and lives with her family. Benjamin is her grandson. Because Benjamin’s parents work and he is in school, he is the main carer in the afternoons. Benjamin is watching a TV show while his grandmother is sewing. The TV show has loud music and vulgar language. Suddenly, his grandmother jumps up and paces up and down the room, wringing her hands. She is muttering to herself “I need to go home”, “I need to go home”. How do you think that Benjamin should respond to this situation? Below are some things that Benjamin may do or say. Please select all the correct responses. „ Think “Grandmother cannot help the way that she behaves.” „ Say “Grandmother! Sit down, you’re making it impossible for me to watch my show.” „ Give his grandmother a smile and reassure her that she is safe. „ Ask his grandmother to help him with something. „ Turn up the volume to drown out the muttering and turn away from her. „ Look for his headphones and encourage his grandmother to go back to her sewing so that she is busy. 2. Check your understanding Responding to a person with dementia who is feeling anxious. Le ss on 4 . D ep re ss io n, an xie ty an d ap at hy iS u p p o rt In te rv e n ti o n M an u al MODULE 5 204 „ Sofia walks over to George and says “I’m sick and tired of this laziness, get up and let’s go". „ Sofia goes over to George and strokes his hair. She says that she loves him and that she would like to do something together. George turns to her and smiles weakly. „ Sofia says: “you never do anything I want anymore, it is impossible to keep on living with you. I don’t know what I’m going to do.” „ Sofia says: “let’s go for a walk together, I know how much you would enjoy getting out of the house for a little while.” „ Sofia closes the door and doesn’t try to engage with George anymore. „ Sofia thinks back to what George used to really like doing and thinks how she could help, for example by reading the newspaper to him, cooking his favourite dish or visiting a shop to let him straighten the shelves with the shopkeeper’s permission. 3. Check your understanding Responding to a person with dementia who loses interest in daily activities. 3. How to respond when a person living with dementia loses interest in daily activities? Let’s look at an example George has dementia and lives with his wife Sofia. George used to be a shopkeeper and was very active in the community. Recently, George has been sitting in a chair near a large window and staring blankly outside, this type of behaviour can also be known as apathy where the person with dementia has trouble becoming interested in doing something. Sofia has become very concerned, because this is not like him. He seems removed and distant from her. One day, she walks in and says “George, shall we go out for a walk?” He does not respond. How do you think Sofia should react? Please check all the responses that you think are appropriate. Le ss on 4 . D ep re ss io n, an xie ty an d ap at hy iS u p p o rt In te rv e n ti o n M an u al MODULE 5 205 Let’s look at your own situation It is important to apply what you have learned to your own situation. The spaces below are for you, like a diary. Does the person living with dementia ever show changes in mood or interest, or any signs of depression or anxiety? If so, what do these changes look like? What could you do to prevent this? How could you respond in a different way? 1. Activity Le ss on 4 . D ep re ss io n, an xie ty an d ap at hy iS u p p o rt In te rv e n ti o n M an u al MODULE 5 206 z Signs of depression and anxiety are common in people with dementia. z Changes in mood can be very upsetting to the person living with dementia and the carer. z People with mood problems need extra love and support. z It is important to identify ways to stop or reduce mood changes, by comforting and getting the person interested in things that they like to do. z If one approach doesn’t work, try another one. z In case of mood changes, remind yourself that they may be part of the disease or a reaction to the disease. z Take a deep breath and think about the best ways to respond that will be the least distressing to you and the person you care for in case they have mood problems or experience a loss of interest. Let’s review what you have learned It is important to recognize when things get serious. If the person you care for has serious and constant mood changes or you think that they are in danger of harming themselves, it is important to seek medical advice right away. Remember You finished this lesson, well done! Le ss on 4 . D ep re ss io n, an xie ty an d ap at hy iS u p p o rt In te rv e n ti o n M an u al MODULE 5 207 iS u p p o rt In te rv e n ti o n M an u al ANSWERS - DEALING WITH BEHAVIOUR CHANGES Lesson 4. Depression, anxiety and apathy AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 4 9 Walk over to Juan and say in a calm, reassuring tone, “I have some ideas for how you can feel better, let’s talk. This is a good response because Juan needs more support due to the changes in his mood. 8 Say: “Juan, what’s the matter with you? I’m tired of seeing you like this. Just get up and do something.” This response is not helpful because Juan cannot help that he is feeling sad. 8 Say: “men don’t cry and get sad, we used to have so much fun together.” This response is not good because it might embarrass Juan and may make him feel even more sad. Below are some things that Isabel may do or say. Please select all responses that you think might work. 9 Go over and touch Juan on the arm or shoulder. “I know that you feel bad, I do too. What we’re going through is really hard.” This is a good response because people who are feeling sad need extra love, support and understanding. 9 Sit with Juan and suggest that they do a pleasant activity together. This is a good response because it may distract Juan and make him feel better. 8 Sigh and walk away, thinking thinking that there is nothing that she can do. This is not helpful because Isabel is further isolating Juan. 1. Check your understanding Responding to a person with dementia who is feeling depressed. iS u p p o rt In te rv e n ti o n M an u al MODULE 5 208 iS u p p o rt In te rv e n ti o n M an u al AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 4 9 Think “Grandmother cannot help the way that she behaves.” This is a good response because it recognizes that Emma’s reaction might be due to changes in her brain. 8 Say “Grandmother! Sit down, you’re making it impossible for me to watch my show.” This response is not good because a direct order like this may make Emma feel even more anxious. 9 Give his grandmother a smile and reassure her that she is safe. This is a good response because people who are feeling anxious need extra love and support. Below are some things that Benjamin may do or say. Please select all the correct responses. 9 Ask his grandmother to help him with something. This might help because it might distract Emma and change her reaction. 8 Turn up the volume to drown out the muttering and turn away from her. This is not a good response. It will only increase his grandmother’s anxiety. 9 Look for his headphones and encourage his grandmother to go back to her sewing so that she is busy. This is a good response. Benjamin can still watch TV with headphones so it is not too loud for Emma, and Emma might be able to engage in her sewing again. 2. Check your understanding Responding to a person with dementia who is feeling anxious. iS u p p o rt In te rv e n ti o n M an u al MODULE 5 209 iS u p p o rt In te rv e n ti o n M an u al AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 4 8 Sofia walks over to George and says “I’m sick and tired of this laziness, get up and let’s go”. This response is not good because a direct order may make George more withdrawn. It doesn’t show any understanding of his dementia. 9 Sofia goes over to George and strokes his hair. She says that she loves him and that she would like to do something together. George turns to her and smiles weakly. This is a good response because it recognizes that the problem is related to his dementia. She is not taking it personally and is expressing extra love and support. 9 Sofia says: “you never do anything I want anymore, it is impossible to keep on living with you. I don’t know what I’m going to do.” This is not a good response because it shows that she is giving up on George. He may become even more withdrawn from her. How do you think Sofia should react? Please check all the responses that you think are appropriate. 9 Sofia says: “let’s go for a walk together, I know how much you would enjoy getting out of the house for a little while.” This is a good response because it is reassuring and may comfort George. 8 Sofia closes the door and doesn’t try to engage with George anymore. This is not the right response because it may worsen George's loss of interest. 9 Sofia thinks back to what George used to really like doing and thinks how she could help, for example by reading the newspaper to him, cooking his favourite dish or visiting a shop to let him straighten the shelves with the shopkeeper’s permission. This is a good response because it shows Sofia cares about George and wants to help him engage in an activity that he would enjoy. 3. Check your understanding Responding to a person with dementia who loses interest in daily activities. iS u p p o rt In te rv e n ti o n M an u al MODULE 5 210 Why is this lesson important? People with dementia may have difficulty sleeping which can impact the carer’s sleep as well. How will this lesson help me? This lesson will provide examples and practice to promote good sleep. What will I learn? 1. How to deal with sleeping problems in a person with dementia? 2. How to deal with a person with dementia who wakes up in the middle of the night? Lesson 5. Difficulty sleeping 1. How to deal with sleeping problems in a person with dementia? Difficulty sleeping can be a problem for people with dementia and their families. People with dementia can have difficulty falling asleep, may wake up in the middle of the night, or wake up too early in the morning. Carers may have their sleep disrupted as a result, which can make it harder to provide care. In this lesson, you will practice how to promote good sleep for the person living with dementia. Le ss on 5 . D iffi cu lty s le ep in g iS u p p o rt In te rv e n ti o n M an u al MODULE 5 211 What is the main sleeping problems of the person that you care for? Please select all that apply. „ Difficulty falling asleep „ Waking up in the middle of the night „ Combination of the above „ Other (please specify): „ No problems at this point 1. Activity Le ss on 5 . D iffi cu lty s le ep in g iS u p p o rt In te rv e n ti o n M an u al MODULE 5 212 Can you break down the cycle of behaviour change in this example into its three parts? What comes before the behaviour? What is the stressful behaviour? What does this mean for Grace? 1. Check your understanding Understanding sleeping difficulties. Difficulty falling asleep Rosie is an older woman with dementia. She lives with her family. She sleeps near her granddaughter, Grace. Usually, the family has dinner around 6pm. The family is used to doing some activities together afterwards. Rosie does not always like these activities so the family often wants her to go to bed as early as 8pm. Granddaughter Grace notices that Rosie has trouble falling asleep. Rosie continues to open and shut her dresser drawers noisily during the evening. When Grace goes to bed, the noise Rosie is making keeps Grace awake. Le ss on 5 . D iffi cu lty s le ep in g iS u p p o rt In te rv e n ti o n M an u al MODULE 5 213 Here are some examples of what Grace could do. Please select all that you think may be appropriate to help Rosie fall asleep: „ Go for a walk with Rosie and add more physical activity during the day. „ Give her a pill to sleep. „ Try and ensure that Rosie does not drink coffee or too much fluid a few hours before going to bed. „ Make lunch the bigger meal of the day. „ Limit daytime naps to 15 to 30 minutes. „ Play soothing music before bedtime to help Rosie sleep. „ Create a bedtime routine, like lowering the lights, washing face and teeth, and changing into pajamas. „ Keep in mind that some people may require less sleep. Generally, 6 to 8 hours sleep from 20:00 means night waking between 2:00 to 4:00 in the morning. 2. Check your understanding Responding to sleeping difficulties. So far, we have covered some basic steps to help the person with dementia fall asleep. What if the problems are a bit more complex? Le ss on 5 . D iffi cu lty s le ep in g iS u p p o rt In te rv e n ti o n M an u al MODULE 5 214 What can Geeta do to keep Vani from wandering at 3:00 in the morning? Please select all responses that you feel are appropriate. „ Try to understand what will help Vani sleep. Some people prefer to keep the room dark with no television or as little noise as possible while others prefer a night light, soft music or a television playing. „ Give Vani a favourite object to relax (e.g. blanket or stuffed animal). „ Schedule an appointment with the doctor to find out if there is a medical reason for her trouble sleeping (e.g. urinary tract infection, pain, medication causing hallucinations). „ Develop an activity schedule to keep Vani awake and busy during the day. „ Encourage physical exercise during the day (e.g. walking, stretching). „ Tell Vani that you won’t take care of her anymore if you are continuously woken up at night. „ Ask if she has to go to the bathroom or is hungry or thirsty. If she says “yes”, then just assist her to meet these needs. „ Physically take hold of her and put her back in bed. „ Ask for help from a family member, friend or a paid professional. 3. Check your understanding Dealing with waking in the middle of the night (1). 2. How to deal with a person with dementia who wakes up in the middle of the night? Let’s look at another example It is 3:00 in the morning, Vani wakes up and starts walking around the house. Her daughter-in-law, Geeta, is sleeping. Vani paces throughout the house and then goes to Geeta and wakes her up. Vani asks: “Where are we? I want to go home”. Geeta is upset, because she has a long day at work tomorrow. Geeta says: “mother, you need to go back to bed, it is 3:00 in the morning.” Vani says: “I am not sleepy.” Geeta yells: “I can’t take this anymore.” Le ss on 5 . D iffi cu lty s le ep in g iS u p p o rt In te rv e n ti o n M an u al MODULE 5 215 Which of the responses below would you choose if the person you care for experiences sleeping problems? Please select all responses that you feel are appropriate. „ Remind yourself to stay calm and focus on getting the person living with dementia to sleep. This way, you will use your energy to solve the sleeping problem, rather than reacting emotionally. „ Gently remind the person that it is dark outside and it is time to sleep. If needed try to relax the person, for example by playing soothing music. „ Read aloud to the person you care for. Choose something that you know has a calming effect, perhaps a poem or story. Sing a song or chant together. Another option is to pray or meditate for 15 minutes together. „ Comfort the person living with dementia. Give them a stuffed animal and hug or hold them until they fall asleep. 4. Check your understanding Dealing with waking in the middle of the night (2). In the previous exercise, you identified several ways of dealing with waking in the middle of the night. Now let's look at your own situation and some additional responses. Sleeping problems may be related to depression. If the person you care for has difficulty sleeping, you might want to read Lesson 4 Depression, anxiety or apathy. Please also seek advice from a doctor. Tip Le ss on 5 . D iffi cu lty s le ep in g iS u p p o rt In te rv e n ti o n M an u al MODULE 5 216 Let’s look at your own situation In an earlier Activity on page 211, you identified the main sleeping problem of the person you care for. It is important to apply what you have learned to your own situation. The space below is for you, like a diary. What could you do to help tackle the sleeping problems? What could you do to improve your reaction to sleeping problems? 2. Activity Le ss on 5 . D iffi cu lty s le ep in g iS u p p o rt In te rv e n ti o n M an u al MODULE 5 217 z Difficulty sleeping is common in people with dementia. z Sleeping problems can be very stressful to deal with. z If the person you care for is having difficulty sleeping, try to make them more comfortable. z Try to identify circumstances that may increase difficulty sleeping and change or address them. z When one approach doesn’t work, try another one. z Realize that there will be good and bad days. z Remind yourself that difficulty sleeping is part of the disease. z Take a deep breath and think about the best ways to respond that will be the least distressing for you and the person you care for in case of sleeping problems. z Ask for help. It is hard to provide good care on limited sleep. Let’s review what you have learned You finished this lesson, well done! Le ss on 5 . D iffi cu lty s le ep in g iS u p p o rt In te rv e n ti o n M an u al MODULE 5 218 iS u p p o rt In te rv e n ti o n M an u al Can you break down the cycle of behaviour change in this example into its three parts? What comes before the behaviour? Rosie is sent to bed as early as 20:00, so that the family can do activities together that Rosie does not like. Rosie has trouble falling asleep and continues to open and shut her dresser drawers noisily during the evening. This keeps Grace awake. What is the stressful behaviour? What does this mean for Grace? 1. Check your understanding Understanding sleeping difficulties. ANSWERS - DEALING WITH BEHAVIOUR CHANGES Lesson 5. Difficulty sleeping AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 5 iS u p p o rt In te rv e n ti o n M an u al MODULE 5 219 iS u p p o rt In te rv e n ti o n M an u al 9 ✓Go for a walk with Rosie and add more physical activity during the day. This is a good idea! Physical exercise during the day may help sleep at night. 8 Give her a pill to sleep. This is not a good idea. It can make someone with dementia even more confused or agitated and sleeping pills may become addictive. 9 Try to ensure that Rosie does not drink coffee or too much fluid a few hours before going to bed. This is a good response. Coffee, tea, or too much liquid can keep people awake, and cause frequent urination. 9 Make lunch the bigger meal of the day. This is helpful. A light dinner makes it easier to sleep. Rosie has trouble falling asleep 9 Limit daytime naps to 15 to 30 minutes. This might be a good idea. It addresses the need for sleep during the day, but it does not prevent Rosie from falling asleep later on. 9 Play soothing music before bedtime to help Rosie sleep. Good idea. Find relaxing activities before bed such as music, or reading to Rosie. Too much activity before bed can cause a person to be stimulated and stay awake. 9 Create a bedtime routine, like lowering the lights, washing face and teeth, and changing into pajamas. This is a good response because a routine will relax the person living with dementia. 9 Keep in mind that some people may require less sleep. Generally, 6 to 8 hours sleep from 20:00 means night waking between 2:00 to 4:00 in the morning. This is a good response. Select a normal sleeping time as much as possible. 2. Check your understanding Responding to sleeping difficulties. AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 5 iS u p p o rt In te rv e n ti o n M an u al MODULE 5 220 iS u p p o rt In te rv e n ti o n M an u al 9 Try to understand what will help Vani sleep. Some people prefer to keep the room dark with no television or as little noise as possible while others prefer a night light, soft music or a television playing. This answer is a good one. Each person is different and you may need to try several possible solutions before finding one that works. 9 Give Vani a favourite object to relax (e.g. blanket or stuffed animal). This response is a good one. It may help Vani feel relaxed and secure. What can Geeta do to keep Vani from wandering at 3:00 in the morning? 9 Schedule an appointment with the doctor to find out if there is a medical reason for her trouble sleeping (e.g. urinary tract infection, pain, medication causing hallucinations). While it is not necessary to seek medical attention every time that a person living with dementia can’t sleep, seek advice if it worries or upsets you or the person living with dementia. 9 Develop an activity schedule to keep Vani awake and busy during the day. This is a good idea. It may improve sleep at night. 3. Check your understanding Dealing with waking in the middle of the night (1). AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 5 iS u p p o rt In te rv e n ti o n M an u al MODULE 5 221 iS u p p o rt In te rv e n ti o n M an u al 9 Encourage physical exercise during the day (e.g. walking, stretching). This may be helpful to improve sleep at night. 8 Tell Vani that you won’t take care of her anymore if you are continuously woken up at night. This is not a good response. Keep in mind that dementia is a disease and someone with dementia will be dependent on the care that others provide. 9 Ask if Vani has to go to the bathroom or is hungry or thirsty. If she says “yes”, then just assist her to meet these needs. This is helpful. Such a break might help the person go back to sleep. 8 Physically take hold of Vani and put her back in bed. Never do this. Although it may be very difficult to deal with sleeping problems, respect the dignity of someone with dementia. Moreover, they may become agitated or angry. It definitely will not solve the sleeping problems. 9 Ask for help from a family member, friend or a paid professional. This might be helpful. Eventually, the lack of sleep can affect any family’s ability to provide care. Someone else can assist by giving the family member a night or a weekend off. AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 5 3. Check your understanding (continued) Dealing with waking in the middle of the night (1). iS u p p o rt In te rv e n ti o n M an u al MODULE 5 222 iS u p p o rt In te rv e n ti o n M an u al 9 Remind yourself to stay calm and focus on getting the person living with dementia to sleep. This way, you will use your energy to solve the sleeping problem, rather than reacting emotionally. Correct! 9 Gently remind the person that it is dark outside and it is time to sleep. If needed try to relax the person, for example by playing soothing music. Great idea! Which of the responses below would you choose if the person you care for experiences sleeping problems? 9 Read aloud to the person you care for. Choose something that you know has a calming effect, perhaps a poem or story. Sing a song or chant together. Another option is to pray or meditate for 15 minutes together. Good response! 9 Comfort the person living with dementia. Give them a stuffed animal and hug or hold them until they fall asleep. Great idea! 4. Check your understanding Dealing with waking in the middle of the night (2). AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 5 iS u p p o rt In te rv e n ti o n M an u al MODULE 5 223 Why is this lesson important? Unreal thoughts and seeing things that aren’t there (delusions and hallucinations) can be very upsetting to the person living with dementia and the carer. How will this lesson help me? This lesson will help you identify ways to stop or reduce delusions and hallucinations and how you might change the way that you respond to them. What will I learn? 1. Why do people with dementia have unreal thoughts and see or hear things that aren’t there? 2. How to stop or reduce delusions and hallucinations? Lesson 6. Delusions and hallucinations 1. Why do people with dementia have unreal thoughts and see or hear things that aren’t there? People with dementia may not understand the world around them because of changes in their brain. These misunderstandings are called delusions (unreal thoughts) and hallucinations (seeing or hearing things that are not there). A delusion is a fixed false belief. For example, the person may hold the false belief of being under threat or harm from the carer. To the person living with dementia the error in thinking is very real, causes fear and may result in distressing self- protective behaviours. If the person is experiencing a hallucination, they might see or hear things that are not there, for example, people talking in the room. People with dementia with these ideas need a lot of understanding and support from the person taking care of them. Le ss on 6 . D elu sio ns an d ha llu cin at io ns iS u p p o rt In te rv e n ti o n M an u al MODULE 5 224 Has the person you care for ever had any unreal thoughts or seen or heard things that were not there? You can describe them in the space below, like in a diary. 1. Activity Unreal thoughts or seeing/hearing things that are not there are common problems for some people with dementia. In this lesson, you will learn how to deal with them. Remember Le ss on 6 . D elu sio ns an d ha llu cin at io ns iS u p p o rt In te rv e n ti o n M an u al MODULE 5 225 What would you recommend Martin do? Please check all correct answers. „ Soothe her in a calm voice. „ Lead her away from the woman in the park. „ Directly tell the truth, harshly, to set the record straight. „ Argue with Betty that the young woman is not her sister. „ Say that the young woman in the park is someone who looks like her, but it is not her. „ Involve the woman in the park in any way. „ Try to ‘convince’ Betty of the truth. „ Say “Yes you are right, it is Susan”. „ Say “When we get home, you can look at pictures of Susan and remember her”. 1. Check your understanding Mistaking a person for someone else. 2. How to stop or reduce delusions and hallucinations? Let’s look at the following example Martin’s wife Betty is living with dementia. One day, Martin and Betty are out for a walk. They see a woman in the distance. Betty starts calling loudly “Susan, Susan, I’m over here”. Then she starts running towards a woman unknown to Martin; a young lady who is probably about 20 years old. Betty mistakenly believes that the young woman in the park is her sister who died in a car accident over 30 years ago. The young woman ignores her. Betty becomes very upset. Le ss on 6 . D elu sio ns an d ha llu cin at io ns iS u p p o rt In te rv e n ti o n M an u al MODULE 5 226 „ Soothe her father, by saying in a calm voice “You are safe, I am with you”. „ Soothe her father, by taking his hand and patting it. „ Check if there is anything in the environment that could be causing Larry's hallucination, such as shadows in the room from the sunlight. Make changes as necessary. „ Lead him away from the room. „ Say that it is simply not true, that there are no other people in the room. What would you recommend Mercedes do? Please check all correct answers. 2. Check your understanding Seeing people that are not there. Now let’s look at another example Mercedes’ father Larry is living with dementia. One day, Larry is a bit restless. Suddenly, he starts to look very frightened while staring at a corner in the room. He calls out to his daughter and says, “Do you see them talking?” He screams, “What are you doing there?” Mercedes is so overwhelmed that she feels like running away. She thinks to herself “Dad’s illness is much worse than I thought it was.” Check with the doctor regarding medication side effects that the person living with dementia is using. These may contribute to the problem. Tip Le ss on 6 . D elu sio ns an d ha llu cin at io ns iS u p p o rt In te rv e n ti o n M an u al MODULE 5 227 Let’s look at your own situation It is important to apply what you have learned to your own situation. Which one would you try first? Unreal or unusual thoughts do not happen all the time. What would you do if the person you care for experiences them? Try to describe different appropriate responses in the space below. 2. Activity Sometimes people with dementia have pleasant hallucinations, like seeing beautiful colours or children who are not there. If these visions are not causing the person distress then try to enjoy them together. Remember Le ss on 6 . D elu sio ns an d ha llu cin at io ns iS u p p o rt In te rv e n ti o n M an u al MODULE 5 228 z Unreal thoughts or seeing/hearing things that are not there (delusions and hallucinations) are common in people with dementia. z They can be very upsetting to the person living with dementia and the carer. z Often, people with these visions and unreal thoughts need a lot of reassurance. z It is important to identify ways to reduce them, not by arguing with the person you care for, but by comforting and distracting them. z Check the environment to see if there is a cause for the delusion or hallucination. z If one approach doesn’t work, try another one. z Remind yourself that unreal thoughts or visions are part of the disease. z Take a deep breath and think about the best ways to respond that will be the least distressing to you and the person you care for if they are experiencing unreal thoughts or visions. You finished this lesson, well done! Let’s review what you have learned Le ss on 6 . D elu sio ns an d ha llu cin at io ns iS u p p o rt In te rv e n ti o n M an u al MODULE 5 229 iS u p p o rt In te rv e n ti o n M an u al ANSWERS - DEALING WITH BEHAVIOUR CHANGES Lesson 6. Delusions and hallucinations 9 ✓Soothe her in a calm voice. This is a good response because people with delusions and hallucinations may feel frightened and insecure. 9 ✓Lead her away from the woman in the park. This is a good response because it will distract her from the young woman in the park. ✓ 8 Directly tell the truth, harshly, to set the record straight. This is not a good response as it may make Betty even more upset. ✓✓ 8 Argue with Betty that the young woman is not her sister. This is not a good response as it may make Betty even more upset. 9 Say that the young woman in the park is someone who looks like her, but it is not her. This is a good response because it maintains a positive social environment. 8 Involve the woman in the park in any way. This is not helpful because it may make the situation more complicated. 8 Try to ‘convince’ Betty of the truth. This is not a good response as Betty may not understand. 8 Say “Yes you are right, it is Susan”. This is not correct because it is not the truth. 9 Say “When we get home, you can look at pictures of Susan and remember her”. This is a good response because Martin addresses the importance of her sister, without arguing that the young woman Betty saw in the park was not her sister. 1. Check your understanding Mistaking a person for someone else. AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 6 iS u p p o rt In te rv e n ti o n M an u al MODULE 5 230 iS u p p o rt In te rv e n ti o n M an u al ANSWERS - DEALING WITH BEHAVIOUR CHANGES Lesson 6. Delusions and hallucinations 2. Check your understanding Seeing people that are not there. AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 6 9 Soothe him, by saying in a calm voice “You are safe, I am with you”. This is a good response because people with hallucinations are often feeling frightened and insecure. 9 Check if there is anything in the environment that could be causing his hallucinations, such as shadows in the room from the sunlight. Make changes as necessary. This is a good response because although a person’s brain may be misinterpreting the environment there could still be a reasonable cause for confusion. 9 Lead him away from the room. This is a good response because changing the environment may distract her father and end the hallucination. 8 Say that it is simply not true, that there are no other people in the room. This is not a good response because arguing about what one sees or hears will not help a person experiencing delusions or hallucinations to calm down. iS u p p o rt In te rv e n ti o n M an u al MODULE 5 231 Why is this lesson important? If a person living with dementia repeats things over and over it can be stressful for themselves and the carer. We will refer to this as a ‘repetitive behaviour’. How will this lesson help me? This lesson will help you understand why repetitive behaviours occur, and how to respond to, and reduce, them. What will I learn? 1. What is repetitive behaviour? 2. How to comfort a person living with dementia in case of repetitive behaviours? Lesson 7. Repetitive behaviour 1. What is repetitive behaviour? A person living with dementia may forget what they have said, heard or did from one moment to the next, leading to repeated questions and actions. Usually doing things over and over is not harmful to the person living with dementia, if the carer knows how to deal with it. If not, the person living with dementia can become anxious, aggressive or depressed and the carer can become stressed. As a result, carers may respond inappropriately, for example by screaming, which often makes the person with dementia feel guilty. Le ss on 7 . R ep et iti ve b eh av io ur iS u p p o rt In te rv e n ti o n M an u al MODULE 5 232 Let’s look at your own situation Does the person you care for ever do or say things over and over again? What behaviour(s) do they repeat? You can describe them in the space below, like a diary. 1. Activity Le ss on 7 . R ep et iti ve b eh av io ur iS u p p o rt In te rv e n ti o n M an u al MODULE 5 233 What would you recommend to John? Please select all correct responses. „ Say “What’s wrong with you? Can’t you remember? We just had lunch!” „ Stay calm and reassure his father that his wife will be home soon. „ Engage his father in an activity. „ Write down the answers to his questions, for example where his wife is and when she is expected to return. „ Walk away. „ Accept the repetitive questions. If it isn’t harmful, let it be. Find ways to adapt. „ Offer his father a snack or a drink. 1. Check your understanding Repeating questions. Let’s look at this example John is taking care of his father Joe, because his mother, the main carer, is out of the house for a few hours. All seems fine, although John notices that his father is rather tense because John’s mother is not there. John and Joe eat lunch together. Sometime after finishing lunch, Joe asks “When is lunch?” and, “What are we having for lunch?” John does not think much of it at first. Then, again, a few minutes later, Joe asks “When is lunch?”, “What are we having for lunch?”, and “Where is your mother?” Joe repeats these questions again and again. John is confused about why Joe is doing this and gets more and more worried about his father. John continues to answer the questions, but gets a bit upset and raises his voice. John responds, loudly and is annoyed, “I have already answered these questions, why do you keep asking?” 2. How to comfort a person living with dementia in case of repetitive behaviours? Le ss on 7 . R ep et iti ve b eh av io ur iS u p p o rt In te rv e n ti o n M an u al MODULE 5 234 Let’s look at your own situation It is important to apply what you have learned to your own situation. The spaces below are for you, like a diary. Now look back at the examples that you identified in the previous activity. Choose the repetitive behaviour that is the most stressful to the person that you care for, or to yourself, and list it below. What could you do to help reduce this behaviour? How could you change your response to this behaviour? 2. Activity Le ss on 7 . R ep et iti ve b eh av io ur iS u p p o rt In te rv e n ti o n M an u al MODULE 5 235 z Doing or saying things over and over again (repetitive behaviour) is common in people with dementia. z Repetition can be very stressful to deal with. z In case of repetition, try to focus on comforting the person you care for. z Try to identify what comes before the repetitive behaviour and what may increase it. Then try to change it. Try to identify how you respond and change that also. z Realize there may be worse, but also better moments. z Remind yourself that repetitive behaviours are part of the disease. z Take a deep breath and think about the best ways to respond that will be the least distressing to you and the person living with dementia if they do or say things over and over again. You finished this lesson, well done! Let’s review what you have learned Le ss on 7 . R ep et iti ve b eh av io ur iS u p p o rt In te rv e n ti o n M an u al MODULE 5 236 iS u p p o rt In te rv e n ti o n M an u al 8 Say “What’s wrong with you? Can’t you remember? We just had lunch!” This is not a good response because John is blaming his father for something that he can’t help. 9 Stay calm and reassure his father that his wife will be home soon. This is a good response as repetition might worsen due to Joe’s feelings of insecurity. He seems to feel insecure because his wife went out. By reassuring Joe that his wife will come back soon, the repetition may lessen or stop. 9 Engage his father in an activity. This can be a good response because it may distract his father and offer something else to see, hear or do. 9 Write down the answers to his questions, for example where his wife is and when she is expected to return. This might work well, may reassure Joe and stop him from asking again. 8 Walk away. This response is not so good because it will only upset his father more. 9 Accept the repetitive questions. If it isn’t harmful, let it be. Find ways to adapt. This can be a good response. Perhaps if it is just repetitive questioning, by remaining calm the behaviour may decrease. 9 Offer his father a snack or a drink. This might be a good response. Perhaps Joe is still hungry or thirsty. It may help to calm him and meet his need. 1. Check your understanding Repeating questions. ANSWERS - DEALING WITH BEHAVIOUR CHANGES Lesson 7. Repetitive behaviours AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 7 iS u p p o rt In te rv e n ti o n M an u al MODULE 5 237 Why is this lesson important? Concerns about walking and getting lost can cause distress. Carers like you may worry whether the person will get lost. How will this lesson help me? This lesson will help you understand the reasons for walking and what to do to reduce the chances of the person living with dementia getting lost. What will I learn? 1. Why is walking a concern? 2. Why a person with dementia might want to walk around? 3. How can I manage habits and reduce the chances that the person I care for gets lost? Lesson 8. Walking and getting lost 1. Why is walking a concern? People with dementia may have the habit of walking around the home or leaving the house and wanting to walk around the neighbourhood, this is also called wandering. This is very common. However, they may get lost. So, safety is a primary concern when people with dementia are out alone. It is important to prevent wandering. This lesson will teach you why people with dementia may have a desire to walk. You will also learn about the steps that you can take to help make this safer. It is important to find ways to help prevent people with dementia from getting lost or ending up in an unsafe situation. Le ss on 8 . W al ki ng an d ge tti ng lo st iS u p p o rt In te rv e n ti o n M an u al MODULE 5 238 Does the person you care for sometimes walk around or walk away? You can describe what happens in the space below, like in a diary. 1. Activity 2. Why a person with dementia might want to walk around? A person with dementia who wanders or walks away may be: z Wanting to exercise. z Continuing a lifelong habit of walking regularly. z Relieving boredom due to not being sufficiently stimulated. z Using up energy from sitting all day. z Relieving pain and discomfort from joint pain or stiffness. z Responding to stress or anxiety. z Feeling lost or uncertain about their surroundings. z Going out and forgetting where they were going. z Searching for someone or something in the past or present. z Seeking fulfilment and purpose such as the desire to go to work. z Getting confused about the time. Le ss on 8 . W al ki ng an d ge tti ng lo st iS u p p o rt In te rv e n ti o n M an u al MODULE 5 239 There are certain things that may help manage a person’s walking habits and prevent them from getting lost. For example, try to: 3. How can I manage habits and reduce the chances that the person I care for gets lost? z Make sure that the person carries some form of identification. z Make sure that your home is secure, that the person is safe in your home and cannot leave without you knowing. For example, camouflaging doors and door knobs may help, or using a bell or curtain that makes noise when someone uses the door. z Keep an up-to-date photograph in case the person you care for gets lost and you must ask for help from others. z After the person you care for is found, speak calmly, with acceptance and love, try to avoid blaming and showing anger. z Keep to the routines and activities of the person you care for. Identify the most likely times of the day that their walking may occur and plan activities such as a walk in the park together at that time. z Reassure the person you care for if they feel lost, abandoned or disoriented, or want to leave to “go home" or “go to work". For example, try saying: “we are staying here tonight. We are safe and I'll be with you. We can go home in the morning after a good night's rest." Try to refrain from correcting the person living with dementia. z Ensure that all basic needs are met. Has the person gone to the bathroom? Are they thirsty or hungry? z Avoid busy places that are confusing and can cause disorientation, such as shopping malls, markets, grocery stores or other crowded places. Le ss on 8 . W al ki ng an d ge tti ng lo st iS u p p o rt In te rv e n ti o n M an u al MODULE 5 240 Let’s look at an example Amit has dementia and is supported by his wife, Samia. Samia is cooking dinner when she hears Amit heading for the door. She knows that he likes to go for afternoon walks, but now is not a good time since she is cooking. What would you recommend to Samia? Please select all correct responses. „ Yell to Amit from the kitchen, “please stop! I can’t come with you now.” „ Turn the cooker off and follow Amit. „ Forbid Amit to leave and pull him back into the house. „ Go to where Amit is standing by the door and calmly say: “let’s eat dinner first and we’ll go for a walk later.” „ Lock the door so that Amit cannot leave. „ Let Amit leave and call a neighbour to keep an eye out for him. „ Ask another family member to go for a walk with him. „ Ask Amit to help with a task in the kitchen. „ Schedule more afternoon walks before dinner. 1. Check your understanding Dealing with walking away. Le ss on 8 . W al ki ng an d ge tti ng lo st iS u p p o rt In te rv e n ti o n M an u al MODULE 5 241 Let’s look at your own situation It is important to apply what you have learned to your own situation. The spaces below are for you, like a diary. What are the possible reasons why the person you care for may have the desire to walk? Please select all answers that apply. Based on the reasons that you selected, how might you react or respond the next time the person you care for wants to go outside or walk? 2.1. What could you do to help the person enjoy walking in a safe way? Take a moment to summarize the points that you have learned in this lesson, which will help you going forward: „ Wanting to exercise. „ Continuing a lifelong habit of walking regularly. „ Relieving boredom due to not being sufficiently stimulated. „ Using up energy from sitting all day. „ Relieving pain and discomfort from joint pain or stiffness. „ Responding to stress or anxiety. „ Feeling lost or uncertain about their surroundings. „ Going out and forgetting where they were going. „ Searching for someone or something in the past or present. „ Seeking fulfilment and purpose such as the desire to go to work. „ Getting confused about the time „ Other (please state): 2. Activity Le ss on 8 . W al ki ng an d ge tti ng lo st iS u p p o rt In te rv e n ti o n M an u al MODULE 5 242 z Walking around or walking away is common. z Walking can be healthy exercise, reduce boredom, and be a common habit or routine of the person. z Walking away or walking alone might be a safety risk. z Concerns about walking and getting lost can be very upsetting to the person living with dementia and the carer. z It is important to identify possible reasons for walking around or walking away. z How you respond to the desire to walk should be based on the possible reasons for it. z If one approach doesn’t work, try another one. z Realize that there may be worse, but also better moments. z Take a deep breath and think about the best ways to respond that will be the least distressing to you and the person living with dementia. If you want to know more about how to plan an enjoyable day, please refer to the Lesson 5. An enjoyable day in Module 4. You finished this lesson, well done! Let’s review what you have learned Le ss on 8 . W al ki ng an d ge tti ng lo st iS u p p o rt In te rv e n ti o n M an u al MODULE 5 243 iS u p p o rt In te rv e n ti o n M an u al Relaxation exercise - Neck movements AN SW ER S - D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 8 ANSWERS - DEALING WITH BEHAVIOUR CHANGES Lesson 8. Walking and getting lost 8 Yell to Amit from the kitchen, “please stop! I can’t come with you now.” This is not a good response because yelling at Amit from the kitchen may confuse and agitate him. It may also not stop him from going out on his own. 9 Turn the cooker off and follow Amit. This is a good response if there are no other alternatives. 8 Forbid Amit to leave and pull him back into the house. This is not a good response because Amit may get agitated and resist being pulled which could result in Amit or Samia being harmed. 9 Go to where Amit is standing by the door and calmly say: “Let’s eat dinner first and we’ll go for a walk later.” This is a good response because Samia stays calm, does not yell, and honors Amit’s wishes by telling him that they will go together after dinner. 9 Lock the door so that Amit cannot leave. This is a good response if no other options exist and Samia is in the house with Amit. For fire safety reasons, a person living with dementia who requires supervision should never be locked inside a house without another person there. 9 Let Amit leave and call a neighbour to keep an eye out for him. This is a good option if Samia has prearranged with the neighbours to keep an eye out for him. If Amit is in the very early stages of dementia, he may be okay while going out on his own to places that are familiar to him. 9 Ask another family member to go for a walk with him. This is a good option. Samia can finish cooking dinner and Amit can enjoy a nice walk before dinner. 1. Check your understanding Dealing with walking away. iS u p p o rt In te rv e n ti o n M an u al MODULE 5 244 iS u p p o rt In te rv e n ti o n M an u al Relaxation exercise - Neck movements AN SW ER S - D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 8 9 Ask Amit to help with a task in the kitchen. This is a good response because it involves distracting Amit from going for a walk alone and gives him purpose and keeps him occupied. 9 Schedule more afternoon walks before dinner. This is a good response because planning ahead will prevent Samia from being interrupted when cooking dinner to assist Amit. It may also help Amit to release some energy and come home to relax before dinner. 1. Check your understanding (continued) Dealing with walking away. iS u p p o rt In te rv e n ti o n M an u al MODULE 5 245 Why is this lesson important? Changes in judgement can be upsetting to the person living with dementia and the carer. How will this lesson help me? This lesson will help you understand the reasons causing changes in judgement and teach you skills to manage this. What will I learn? 1. What are changes in judgement? 2. How can you manage changes in judgement? 3. What to do if the changes in judgement are more serious? Lesson 9. Changes in judgement 1. What are changes in judgement? Changes in judgement may include saying the wrong thing at the wrong time, acting inappropriately in a situation, or not understanding one’s own limitations. Usually these actions are not harmful, but they can be stressful or embarrassing for the person living with dementia or the carer. People with dementia are often looking for guidance or reassurance. Le ss on 9 . C ha ng es in ju dg em en t iS u p p o rt In te rv e n ti o n M an u al MODULE 5 246 Did you ever notice that the person you care for sometimes has a change in their judgement? If so, what did you observe? Please describe this in the space below. How did it affect you as the carer? 1. Activity Tip Changes in judgement will increase as dementia progresses. In this lesson you can practice several ways of responding to changes in judgement and find out what may help. Le ss on 9 . C ha ng es in ju dg em en t iS u p p o rt In te rv e n ti o n M an u al MODULE 5 247 2. How can you manage changes in judgement? Let’s go through an example Ivan is in town visiting his aunt Isabel who has dementia. They are on their way to a restaurant for dinner. In order to get there, Ivan decides to hail a taxi. All of a sudden, the car pulls up alongside Isabel and startles her. Isabel, who is normally a very gentle woman, starts scolding the taxi driver. What would you recommend to Ivan to help him deal with this situation? Please select all correct responses. „ Put his hand on Isabel’s mouth in order to stop her scolding the driver. „ Walk Isabel back to her apartment and leave because what happened is embarrassing. „ Stay calm and reassure Isabel everything is alright. „ Accept the behaviour. If the taxi driver doesn’t seem to notice, let it be. Find ways to adapt. „ Ivan could carry a business card that explains, ‘My companion has dementia, please be patient with us.’ and give this card to the taxi driver. 1. Check your understanding Managing changes in judgement. Le ss on 9 . C ha ng es in ju dg em en t iS u p p o rt In te rv e n ti o n M an u al MODULE 5 248 3. What to do if changes in judgement are more serious? The last example was a brief and one-time experience for Ivan. However, what happens if the changes in judgement experienced by a person living with dementia are more serious? Here are three examples to help you learn how to react. Mishandling finances Sophie has dementia and lives alone. Her cousin Julia has come to visit her. Despite the fact that Sophie has always been organised, Julia arrives to find that there is a large pile of unopened mail on the kitchen table. Julia wonders if Sophie has had some trouble paying her bills. She asks Sophie about her finances. Sophie cannot remember whether she has paid her bills or not, does not know when they are due, and cannot recall how much money she has in her bank account. Julia becomes quite concerned. What would you recommend to Julia? Please select all correct responses. „ Stay calm and call Sophie’s daughter. „ Go to the bank and ask for control of Sophie’s finances. „ Leave because she feels uneasy. „ Ask Sophie if she would like some help in opening her mail. „ ✓Try to find out whether Sophie has someone who handles her finances, like a family member or a professional. 2. Check your understanding Managing more serious changes in judgement (1). Le ss on 9 . C ha ng es in ju dg em en t iS u p p o rt In te rv e n ti o n M an u al MODULE 5 249 Insisting on driving Hugo is living with dementia. His neighbour, Pablo, notices that his car is parked very strangely one day, obstructing some of the other cars on the street. Pablo walks out of his apartment, sees Hugo and attempts to start a conversation. Instead of stopping, Hugo jumps in his car, speeds off and takes an illegal left turn out of the compound. Hugo returns quickly and nothing bad seems to have happened. What would you recommend to Pablo? Please select all correct responses. „ Immediately seize Hugo’s car keys when he returns. This will prevent it from happening again. „ Stay calm and ask whether Hugo has any other places to go that day, and if so, offer him a ride. „ Ignore the situation because it is embarrassing. „ Ask Hugo if he would like some help figuring out transportation. „ Tell Hugo that he is concerned about his driving and suggest visiting his doctor to discuss it. „ Report the incident to Hugo’s carer, friend or family member. 3. Check your understanding Managing more serious changes in judgement (2). It is better if the decision not to drive comes from the person living with dementia. Giving up driving is typically a difficult time in the person’s life where they are losing independence. Alternatives such as offering regular rides, teaching the person how to use public transportation or arranging taxis will help the person stay active and involved in their community activities. It is important that the person does not become isolated or lonely once they give up driving. More effort will be needed to keep them connected to the world outside their home. Tip Le ss on 9 . C ha ng es in ju dg em en t iS u p p o rt In te rv e n ti o n M an u al MODULE 5 250 Inappropriate sexual advances Mateo is in his late 70s, has dementia and lives with his family. Two days a week, an in-home aide, Camila, who is 22 years old, comes to help him take a bath and administer his medication. This arrangement has been working well for several months. One day, while preparing for his bath, Mateo makes some sexual remarks and tries to pull Camila close to him. Camila is shocked and surprised. She runs out of the room and tells the family that she can no longer work there. If the inappropriate advances continue, the family might want to consider hiring a male in-home aide instead of a female one which could prevent this behaviour. They also might seek help from a professional. Tip What would you recommend to Mateo’s family? Please select all correct responses. „ Stay calm and tell Mateo that this behaviour is unacceptable. Explain who Camila is. „ Change the bathing situation. Perhaps Camila can set up a sponge bath and Mateo can do more himself. „ Change the environment. Put a towel or robe over Mateo’s shoulders while he is being bathed to keep him covered for privacy. „ Shout at Mateo, shaming him for his conduct. „ Ignore the situation. 4. Check your understanding Managing more serious changes in judgement (3). Le ss on 9 . C ha ng es in ju dg em en t iS u p p o rt In te rv e n ti o n M an u al MODULE 5 251 Let’s look at your own situation It is important to apply what you have learned to your own situation. Earlier, we asked whether the person you care for sometimes shows changes in judgement. After going through these examples, think again about your own situation. The spaces below are for you, like a diary. Does the person living with dementia sometimes show changes in judgement? In what way could you respond? Take a moment to summarize the points that you have learned, which will help you deal with changes in judgment in the future. 2. Activity Changes in judgement may hamper decision-making. If you want to know more, review Lesson 3. Supported decision-making in Module 2. Remember Le ss on 9 . C ha ng es in ju dg em en t iS u p p o rt In te rv e n ti o n M an u al MODULE 5 252 z Changes in judgement usually increase as dementia progresses. z Changes in judgement can be very upsetting for the person living with dementia and the carer. z It is important to reduce or prevent changes in judgement, whenever possible. z Realize that there may be good and bad days. z Remind yourself that this is a part of the disease. z Take a deep breath and think about the best ways to respond that will be the least distressing to you and the person you care for. z Plan for increasing levels of changes in judgement. You finished this lesson, well done! Let’s review what you have learned Le ss on 9 . C ha ng es in ju dg em en t iS u p p o rt In te rv e n ti o n M an u al MODULE 5 253 iS u p p o rt In te rv e n ti o n M an u al 8 ✓Put his hand on Isabel’s mouth in order to stop her scolding the driver. This response is not good because it may even worsen the situation and cause Isabel further agitation. ✓ 8 Walk Isabel back to her apartment and leave because what happened is embarrassing. This response is not good because Isabel may feel bad and isolated. 9 ✓Stay calm and reassure Isabel everything is alright. This is a good response because it shows Ivan cares about Isabel. It may stop her from scolding the taxi driver and make her feel more relaxed. What would you recommend to Ivan? 9 ✓Accept the behaviour. If the taxi driver doesn’t seem to notice, let it be. Find ways to adapt. This can be an appropriate response if the behaviour is not harming anyone. 9 Ivan could carry a business card that explains, ‘My companion has dementia, please be patient with us.’ and give this card to the taxi driver. This is a good response because it relieves Ivan from explaining the situation to the taxi driver which may embarrass Isabel. 1. Check your understanding Managing changes in judgement. ANSWERS - DEALING WITH BEHAVIOUR CHANGES Lesson 9. Changes in judgement AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 9 iS u p p o rt In te rv e n ti o n M an u al MODULE 5 254 iS u p p o rt In te rv e n ti o n M an u al 9 Stay calm and call Sophie’s daughter. This response is good because Julia shares her worries with Sophie’s closest relative, her daughter, who might know more and can arrange help if needed. 8 Go to the bank and ask for control of Sophie’s finances. This is not appropriate because it is Sophie’s decision to appoint a person that she is comfortable with to help manage her finances. 8 Leave because she feels uneasy. This response is not appropriate. If Sophie has problems dealing with her finances, letting the situation continue could make things worse. What would you recommend to Julia? 9 Ask Sophie if she would like some help with opening her mail. This response is good because Sophie may be able to pay her bills if given the right prompts, such as opening the bills in front of her and cueing her to pay one at a time. 9 Try to find out whether Sophie has someone who handles her finances, like a family member or a professional. This is a good response because Sophie may be at the point in her illness where she is no longer able to handle the finances on her own. If it seems that she is not getting any help with handling her finances, Julia may want to call her daughter to share her worries. 2. Check your understanding Managing more serious changes in judgement (1). ANSWERS - DEALING WITH BEHAVIOUR CHANGES Lesson 9. Changes in judgement AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 9 iS u p p o rt In te rv e n ti o n M an u al MODULE 5 255 iS u p p o rt In te rv e n ti o n M an u al 8 Immediately seize Hugo’s car keys when he returns because this will prevent it from happening again. This is not a good response because Pablo cannot decide whether his neighbour should drive anymore, and Hugo may become angry. 9 Stay calm and ask whether Hugo has any other places to go that day, and if so, offer him a ride. This is a good response because it prevents Hugo from driving unsafely and provides safe transportation, so Hugo can run his errands. 8 Ignore the situation because it is embarrassing. This response is not good because Hugo’s driving may cause harm to himself and others. What would you recommend to Pablo? 9 Ask Hugo if he would like some help figuring out transportation. This response is appropriate because Hugo may be able to safely ride a bus or walk, preventing any unsafe behaviour. 9 Tell Hugo that he is concerned about his driving and suggest visiting his doctor to discuss it. This is a good response as Pablo respects Hugo by being honest and raising a concern. 9 Report the incident to Pablo’s carer, friend or family member. This is a possible response. Pablo may not know if Hugo has dementia and could be concerned about the risk of harm to Hugo and others. 3. Check your understanding Managing more serious changes in judgement (2). AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 9 iS u p p o rt In te rv e n ti o n M an u al MODULE 5 256 iS u p p o rt In te rv e n ti o n M an u al 9 Stay calm and tell Mateo that this behaviour is unacceptable. Explain who Camila is. This option is a good one. Mateo’s family does not overreact because they remember it is the disease taking effect. They redefine the appropriate boundaries for Camila’s safety. 9 Change the bathing situation. Perhaps Camila can set up a sponge bath and Mateo can do more himself. This is a good option. Letting Mateo do more himself will distract him. In this way, both Camila and Mateo’s dignity are maintained. What would you recommend to Mateo’s family? 9 Change the environment. Put a towel or robe over Mateo’s shoulders while he is being bathed to keep him covered for privacy. This is a good response. Perhaps because Mateo is naked, he misunderstands the situation. 8 Shout at Mateo, shaming him for his conduct. This response is not good because as part of his dementia Mateo may not know that these advances are inappropriate. Therefore, try not to overreact. 8 Ignore the situation. This response is not good because Mateo may continue to make inappropriate sexual advances and cause distress to Camila. 4. Check your understanding Managing more serious changes in judgement (3). AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 9 iS u p p o rt In te rv e n ti o n M an u al MODULE 5 257 Why is this lesson important? Certain changes in behaviour can be particularly stressful for the person living with dementia and the carer. How will this lesson help me? This lesson will summarize ways to prevent, reduce or manage behaviour changes. What will I learn? 1. The most important things to keep in mind when dealing with challenging behaviours. 2. Practical tips on not blaming yourself, sharing your feelings with others and making time for yourself. Lesson 10. Putting it all together 1. The most important things to keep in mind when dealing with behaviour changes z Behaviour changes can be stressful for the person you care for and yourself. This is quite common. z Try to make the person you care for feel more comfortable. z Look for ways to prevent or reduce behaviour changes that are stressful, for example by using memory aids. z Try to distract the person you care for, don’t argue. z When one approach does not work, try another one. z Realize that there may be good and bad days. z Consult a medical doctor to identify any causes related to medication or illness. z Identify whether the environment or your approach could be causing the particular symptom. z Remind yourself that behaviour changes are part of the disease but other possible causes should be identified before accepting the disease as a cause. Le ss on 1 0. P ut tin g it al l t og et he r iS u p p o rt In te rv e n ti o n M an u al MODULE 5 258 2. Practical tips on not blaming yourself, sharing your feelings with others and making time for yourself Here are some tips from related lessons. If you did not take these lessons yet, you can complete them after finishing this one. z Don’t blame yourself or the person living with dementia for the problems that you encounter. If you want to work on ways to manage your feelings, take a look at the last page of Lesson 3. Thinking differently in Module 3. z Share your feelings about your experiences as a carer with others. If you keep them to yourself it may be more difficult for you to look after your family member or friend. If you want to learn more about involving others, take a look at Lesson 4. Involving others in Module 2. z It is essential that you make time for yourself. This will allow you to do the things that you value in life, such as spending time with others or enjoying your favourite hobbies. If you want to learn more about doing pleasant activities, take a look at Lesson 2. Making time for pleasant activities in Module 3. You finished this lesson, well done! Le ss on 1 0. P ut tin g it al l t og et he r

Worldwide, carers of people with dementia should have access to information and support in order to effectively respond to, and manage, the physical, mental and social demands associated with caring for someone living with dementia. This iSupport manual has been developed to provide accessible, evidence-based training and information, tailored to carers’ needs. It aims to improve knowledge and caregiving skills, such as carers’ ability to cope with dementia symptoms and care for themselves. iSupport is also available online and can be accessed at www.isupportfordementia.org/en. For further information, please contact: Department of Mental Health and Substance Abuse World Health Organization Avenue Appia 20 CH-1211 Geneva 27 Switzerland Email: whodementia@who.int Wesbite: www.who.int/mental_health/neurology/dementia/en ISBN: 9789241515863

iSupport For Dementia Training and support manual for carers of people with dementia iS u p p o rt In te rv e n ti o n M an u al iSupport For Dementia Training and support manual for carers of people with dementia © World Health Organization 2019 Some rights reserved. This work is available under the Creative Commons Attribution-NonCommercial-ShareAlike 3.0 IGO licence (CC BY-NC-SA 3.0 IGO; https://creativecommons.org/licenses/by-nc-sa/3.0/ igo). Under the terms of this licence, you may copy, redistribute and adapt the work for non-commercial purposes, provided the work is appropriately cited, as indicated below. In any use of this work, there should be no suggestion that WHO endorses any specific organization, products or services. The use of the WHO logo is not permitted. If you adapt the work, then you must license your work under the same or equivalent Creative Commons licence. If you create a translation of this work, you should add the following disclaimer along with the suggested citation: “This translation was not created by the World Health Organization (WHO). WHO is not responsible for the content or accuracy of this translation. The original English edition shall be the binding and authentic edition”. Any mediation relating to disputes arising under the licence shall be conducted in accordance with the mediation rules of the World Intellectual Property Organization. Suggested citation. iSupport for dementia. Training and support manual for carers of people with dementia. Geneva: World Health Organization; 2019. Licence: CC BY-NC-SA 3.0 IGO. Cataloguing-in-Publication (CIP) data. CIP data are available at http://apps.who.int/iris. Sales, rights and licensing. To purchase WHO publications, see http://apps.who.int/bookorders. To submit requests for commercial use and queries on rights and licensing, see http://www.who.int/about/ licensing. Third-party materials. If you wish to reuse material from this work that is attributed to a third party, such as tables, figures or images, it is your responsibility to determine whether permission is needed for that reuse and to obtain permission from the copyright holder. The risk of claims resulting from infringement of any third-party-owned component in the work rests solely with the user. General disclaimers. The designations employed and the presentation of the material in this publication do not imply the expression of any opinion whatsoever on the part of WHO concerning the legal status of any country, territory, city or area or of its authorities, or concerning the delimitation of its frontiers or boundaries. Dotted and dashed lines on maps represent approximate border lines for which there may not yet be full agreement. The mention of specific companies or of certain manufacturers’ products does not imply that they are endorsed or recommended by WHO in preference to others of a similar nature that are not mentioned. Errors and omissions excepted, the names of proprietary products are distinguished by initial capital letters. All reasonable precautions have been taken by WHO to verify the information contained in this publication. However, the published material is being distributed without warranty of any kind, either expressed or implied. The responsibility for the interpretation and use of the material lies with the reader. In no event shall WHO be liable for damages arising from its use. iSupport for dementia. Training and support manual for carers of people with dementia ISBN 978-92-4-151586-3 Layout by Van Cleef Emnacen CONTENTS Module 1. Introduction to dementia 1 Module 2. Being a carer 11 Lesson 1. The journey together 12 Lesson 2. Improving communication 24 Lesson 3. Supported decision-making 42 Lesson 4. Involving others 57 Module 3. Caring for me 69 Lesson 1. Reducing stress in everyday life 70 Lesson 2. Making time for pleasant activities 82 Lesson 3. Thinking differently 92 Module 4. Providing everyday care 107 Lesson 1. Eating and drinking - more pleasant mealtimes 108 Lesson 2. Eating, drinking and preventing health problems 121 Lesson 3. Toileting and continence care 128 Lesson 4. Personal care 140 Lesson 5. An enjoyable day 152 Module 5. Dealing with behaviour changes 165 Lesson 1. Introduction to behaviour changes 166 Lesson 2. Memory loss 177 Lesson 3. Aggression 187 Lesson 4. Depression, anxiety and apathy 201 Lesson 5. Difficulty sleeping 210 Lesson 6. Delusions and hallucinations 223 Lesson 7. Repetitive behaviour 231 Lesson 8. Walking and getting lost 237 Lesson 9. Changes in judgement 245 Lesson 10. Putting it all together 257 ACKNOWLEDGEMENTS i PREFACE iii USER GUIDE iv iS u p p o rt In te rv e n ti o n M an u al i Technical Reviewers and Advisors Emiliano Albanese, WHO Collaborating Center for Training and Research in Mental Health, University of Geneva, Switzerland; Nicole Batsch, Alzheimer’s Disease International, London, UK; Upasana Baruah, National Institute of Mental Health and Neurosciences, Bangalore, India; Kiki Edwards, Rossetti Care, Ibadan, Nigeria; Kieren Egan, WHO Collaborating Center for Training and Research in Mental Health, University of Geneva, Switzerland; Mariella Guerra, Instituto de la Memoria, Lima, Peru; Jayna Holroyd-Leduc, University of Calgary, Canada; Timothy Kwok, Jockey Club Centre for Positive Ageing, The Chinese University of Hong Kong, Hong Kong; Marleen Prins, WHO Collaborating Centre for Dissemination of Good Practices in Mental Health, Trimbos-Institute, Utrecht, Netherlands; Santosh Loganathan, National Institute of Mental Health and Neurosciences, Bangalore, India; Prafulla Shivakumar, National Institute of Mental Health and Neurosciences, Bangalore, India; Iris van Asch, WHO Collaborating Centre for Dissemination of Good Practices in Mental Health, Trimbos-Institute, Utrecht, Netherlands; Mathew Varghese, National Institute of Mental Health and Neurosciences, Bangalore, Vision, conceptualization and project management Tarun Dua, Anne Margriet Pot (project manager), Shekhar Saxena, Diana Zandi. Project coordination and editing The team that coordinated the development of the manual, including writing and editing, was comprised of Neerja Chowdhary, Stéfanie Fréel, Anne Margriet Pot and Katrin Seeher. Contribution Valuable help and advice was received from many organizations, experts, people with dementia, and carers who have contributed to the development of iSupport, including but not limited to those mentioned below. Key Contributions Dolores Gallagher-Thompson, Stanford University, Stanford, USA; Kala Mehta, Stanford University, Stanford, USA; Bernadette Willemse, WHO Collaborating Centre for Dissemination of Good Practices in Mental Health, Trimbos-Institute, Utrecht, Netherlands; Lilly Xiao, Flinders University, Adelaide, Australia. ACKNOWLEDGEMENTS AC KN OW LE DG EM EN TS iS u p p o rt In te rv e n ti o n M an u al ii India; Huali Wang, Dementia Care & Research Center, Peking University Institute of Mental Health, Beijing, China; Marc Wortmann, Marc Wortmann Consulting. WHO Staff, Consultants and Interns Alison Brunier, Kenneth Carswell, Emma Cradock, Sophie D’Souza, Melissa Harper Shehadeh, Marije Kaat, Dévora Kestel, Neha Kinariwalla, Annet Kleiboer, Harleen Rai, Dag Rekve, Hiral Shah, Mark van Ommeren, Shuo Wang. Administrative Support Caroline Herment, Jacqueline Lashley, Adeline Loo, Ophel Riano. Production Team Development (web version): Iris Rosier, Kirsten van der Werff, Katherina Martin Abello, WHO Collaborating Centre for Dissemination of Good Practices in Mental Health, Trimbos-Institute, Utrecht, Netherlands, in collaboration with; Deepak Bhikharie, Edi Recica, Kees Schouten, Aan Zee, Noordwijk aan zee, Netherlands. Illustrations: Janet van der Werff, Drachten, Netherlands. Graphic design and layout (iSupport manual): Van Cleef Emnacen, Philippines. Editing: Harriet Payne, Alzheimer’s Disease International, London, U.K. Financial Support WHO would like to thank the following countries/agencies for supporting the development and production of iSupport: Alzheimer’s Association, U.S.A.; and, the Ministry of Health, Welfare and Sport, Netherlands. Neither of them are individually responsible in any way for the content, functioning of, or views displayed on iSupport. AC KN OW LE DG EM EN TS iS u p p o rt In te rv e n ti o n M an u al iii Being a carer for someone with dementia may affect one’s physical and mental health, well-being, and social relationships. Long- term care systems must account for the significant emotional, financial and social impact of caregiving on families and relatives, while addressing the needs of people with dementia. This includes providing carers with access to education, skills training, respite and social support through affordable, evidence-based resources. To address this need, the World Health Organization (WHO) has developed iSupport, an online skills training and support programme for carers of people with dementia. This iSupport manual allows carers who do not have access to the internet, or who prefer a manual, to benefit from the tool. The iSupport online programme and manual are currently being field-tested. It is our hope that the programme will be adapted by, and implemented in, many countries around the world. Dévora Kestel Director, Department of Mental Health and Substance Abuse Dementia is a major cause of impairement that affects a person’s memory, thinking and behaviour, and interferes with one’s ability to perform daily activities. It affects people worldwide, in particular older people. Globally, families provide the majority of care to people with dementia. The impact of dementia is significant to the individual who lives with dementia, their families, societies and countries, both in financial terms and human costs. The Global action plan on the public health response to dementia 2017-2025 represents an important step forward in achieving physical, mental and social wellbeing for people with dementia, their carers and families. It is an opportunity for individuals, communities and countries to realize the vision of a world in which dementia is prevented and people with dementia and their carers receive the care and support they need to fulfil their potential with dignity, respect, autonomy and equality. P R E FA C E PR EF AC E PREFACE iS u p p o rt In te rv e n ti o n M an u al iv What is included in the iSupport manual? The manual is organized into five modules (see Figure 1 page vi): (1) introduction to dementia; (2) being a carer; (3) caring for me; (4) providing everyday care; and (5) dealing with behaviour changes that might happen in people living with dementia. Module 1 provides an introduction to what dementia is, including what happens to people with dementia and what to do if you think that your family member or friend has dementia. Module 2 focuses on improving communication, shared decision-making and involving others in caring for the person living with dementia. Module 3 aims to reduce carer stress by making time for pleasant activities and thinking differently. Module 4 focuses on eating and drinking, including creating more pleasant mealtimes and preventing health problems, using the toilet and continence care, and personal care. Worldwide, carers of people with dementia should have access to information and support tailored to their needs in order to effectively respond to, and manage, the physical, mental and social demands associated with caring for someone living with dementia. iSupport has been developed to provide accessible, evidence-based training and information, tailored to carers’ needs. It aims to improve knowledge and caregiving skills, such as carers’ ability to cope with dementia symptoms and care for themselves. iSupport seeks to enable people with dementia to live in the community while preventing or reducing carer stress. The lessons included in this manual were carefully designed to help carers tackle the important challenges that they may face when caring for someone living with dementia. US ER G UI DE USER GUIDE iS u p p o rt In te rv e n ti o n M an u al v Finally, Module 5 provides an introduction to common changes in behaviour for people with dementia that might be distressing and upsetting for both the person with dementia and you as the carer. These symptoms include memory loss, aggression, depression and anxiety, difficulty sleeping, delusions and hallucinations, repetitive behaviour, walking and getting lost as well as poor or decreased judgement. Who is the target audience? This iSupport manual is primarily for carers of people with dementia, including family members and relatives, friends, and other carers. However, iSupport may also be of interest to others, for example: z nongovernmental organizations (NGOs) providing skills training, support and/or information to carers of people with dementia; z health and social care workers providing care and information to carers of people with dementia; and z private sector representatives involved in the development of health technologies for dementia, dementia health care service delivery or health care insurance. US ER G UI DE iSUPPORT Caring for me MODULE 3 Being a carer MODULE 2 Providing everyday care MODULE 4 Dealing with behaviour changes MODULE 5 What is dementia and how does it affect someone The journey together Reducing stress in everday life Eating and drinking: more pleasant mealtimes Introduction Delusions and hallucinations Repetitive behaviours Eating, drinking and preventing health problems Memory loss Walking and getting lost Toileting and continence care Aggression Changes in judgement Personal care Depression, anxiety and apathy Putting it all together An enjoyable day Difficulty sleeping Making time for pleasant activities Thinking differently Improving communication Supported decision-making Involving others Introduction to dementia MODULE 1 vi Figure 1 iS u p p o rt In te rv e n ti o n M an u al vii How to use this iSupport manual? iSupport has been developed as a self-help tool for carers of people living with dementia. Each module is divided into individual lessons (see Figure 1). All lessons are structured in the same way. At the beginning, there is an overview of why the lesson is important, how the lesson will help you as a carer and what you will learn. Each lesson then consists of a mixture of brief reading to provide new information, descriptive examples, multiple choice questions and activities to practice what you have learned. You may choose to work through the entire manual from beginning to end or select the lessons that are most relevant to your everyday life. You can also come back to individual lessons. How was iSupport developed? iSupport is grounded in WHO’s Mental Health Gap Action Programme (mhGAP) guidelines for carers of people with dementia. mhGAP aims to scale health and social care services for mental, neurological and substance use disorders for all countries, with a focus on low- and middle-income countries (LMICs). iSupport was developed based on evidence related to the feasibility and effectiveness of carer training and support interventions, both in person and online. Finally, the programme was developed in collaboration with international experts in the field of caregiving for people with dementia and internet-based interventions, and reflects the voices of carers of people with dementia. For more information on the development of iSupport see Pot et al (2019)1. US ER G UI DE 1 Pot AM, Gallagher-Thompson D, Xiao LD, Willemse BM, Rosier I, Mehta KM, Zandi D, Dua T. iSupport: a WHO global online intervention for informal carers of people with dementia. World Psychiatry. 2019. iS u p p o rt In te rv e n ti o n M an u al viii These exercises will help you feel calm and reduce stress. There is an entire lesson on relaxation activities included in Module 3. Relaxation activity Tip/Reminder/Keep in Mind Tips help you reflect on your learning or give practical reminders of how to apply what you have learned to your everyday life. Activity Here you will be asked to reflect upon how caregiving for a person with dementia is affecting your life or the life of the person with dementia. Example. How are you feeling right now? Please select all that apply. † Sad † Happy † Angry † Confused Check your understanding Here you will be asked a question about what you have learned. Answers are at the end of every lesson. Example: What color is the sky? † Green † Blue † Red † Orange US ER G UI DE Below is a guide to the individual exercises and activities that you will encounter throughout the manual. These exercises and activities allow for you to check your understanding and reflect on your learning in practical ways. iS u p p o rt In te rv e n ti o n M an u al ix Other uses of iSupport Although iSupport is primarily a self-help tool, we encourage a broader use. For example, iSupport might be supplemented by guidance from volunteers or health care workers to create more impact. The iSupport manual can also serve as a tool to structure educational or support group meetings for carers of people with dementia, or it may simply be used as a resource tool for participants of self-help groups. Finally, health care workers might find iSupport useful in assisting and supporting carers. Please note that both the iSupport online training programme and this manual are subject to ongoing rigorous field-testing and evaluation. More research is needed to evaluate the effectiveness of local adaptions and implementations. How to adapt iSupport? The iSupport manual represents a template that can be adapted to national or local contexts and needs. An adaptation and implementation guide is available to assist countries/communities in this process. WHO owns the copyright on iSupport. If you are interested in adapting and implementing iSupport, please contact WHO at whodementia@who.int to request a copyright license. This applies to both the iSupport manual and the online programme, accessible at www.iSupportForDementia.org. US ER G UI DE M od ul e 1 . I nt ro du ct io n to d em en tia M od ul e 1 . I nt ro du ct io n to d em en tia INTRODUCTION TO DEMENTIA 1 MODULE iS u p p o rt In te rv e n ti o n M an u al 2 Introduction to dementia Why is this lesson important? Dementia is a disease that can be overwhelming for the person with dementia, but also for you as a carer. There are many myths about dementia and learning more will help explain some common misunderstandings. How will this lesson help me? This lesson helps you to understand the basics of what dementia is and how it affects someone. This information is essential when you are a carer. What will I learn? 1. What is dementia? 2. What causes dementia? 3. What happens to people with dementia as the disease progresses? 4. What to do if you think that the person you care for has dementia? 5. How to reach out for help? 6. What is the focus of this manual? MODULE 1 In tro du ct io n to d em en tia iS u p p o rt In te rv e n ti o n M an u al 3 1. What is dementia? Dementia occurs as a result of a disease process that increasingly damages the brain over time. Dementia affects all groups of society and is not linked to social class, gender, ethnic group, or geographic location. Dementia is not a part of normal ageing. Although dementia is more common among older people, younger people can also be affected. 2. What causes dementia? Dementia is caused by a number of diseases which destroy nerve cells and damage the brain, as outlined below. Alzheimer’s disease Alzheimer’s disease is the most common cause of dementia. It destroys brain cells and nerves, disrupting the transmitters that carry messages in the brain, particularly those responsible for storing memories. Vascular dementia Vascular dementia occurs where blood vessels are damaged, the supply of oxygen to the brain fails and as a result, brain cells die. The symptoms of vascular dementia can occur either suddenly, following a stroke, or over time, through a series of small strokes. Vascular dementia accounts for 20%-30% of all cases of dementia. Dementia with Lewy bodies Dementia with Lewy bodies is similar to Alzheimer’s disease in that it is caused by deteriorating and dying nerve cells in the brain. It takes its name from abnormal deposits of protein - Lewy bodies - in the nerve cells of the brain. It may account for around 10% of all cases of dementia. Approximately, half the people with Lewy body disease also develop signs and symptoms of Parkinson’s disease. MODULE 1 In tro du ct io n to d em en tia iS u p p o rt In te rv e n ti o n M an u al 4 Fronto-temporal dementia In fronto-temporal dementia - including Pick’s disease - damage is usually concentrated in the front part of the brain. In the beginning, personality and behaviour are more affected than memory. Rarer causes of dementia There are many other rarer causes of dementia, such as alcohol-related dementia and dementia due to HIV/AIDS. 3. What happens to people with dementia as the disease progresses? Every person is unique and dementia affects people differently. No two people will develop the same difficulties in exactly the same way. It is not just the brain damage that determines how dementia affects someone, but also other factors including an individual’s personality, life course, general health and functioning, and living environment. MODULE 1 People with dementia often forget things or have trouble with their memory. Select the correct answer. „ TRUE „ FALSE 1. Check your understanding What happens to people with dementia? In tro du ct io n to d em en tia iS u p p o rt In te rv e n ti o n M an u al 5 Dementia symptoms can range from minor memory loss to severe difficulties in memory and thinking that make it impossible to manage daily activities without help. It can be helpful to view dementia as a series of stages to understand the illness. However, it is important to realize that this only provides a rough guide to the progress of dementia. Not all people with dementia will have all symptoms and some of the symptoms may only appear at one stage of the disease. In the early stage of the disease, people with dementia may have memory problems, become disoriented with respect to time, lost in familiar places and show difficulties making decisions. As dementia progresses to the middle stage, people with dementia may become very forgetful and in need of help with daily activities such as shopping, dressing, and washing. Dementia has stages In the late stage, people with dementia may not recognize relatives or friends anymore may display changes in behaviour that can be upsetting and distressing to the person with dementia and those around them. MODULE 1 In tro du ct io n to d em en tia iS u p p o rt In te rv e n ti o n M an u al 6 Here are some common things that may happen to people with dementia. Do you think that your family member/friend/the person that you care for experiences any of the following? Please select all that apply. 1. Activity Does the person you care for… Have trouble remembering things that happened minutes before? Find it difficult to perform daily activities? Struggle to identify time or place? Communicate differently than they did before? Misplace things? Withdraw socially? Show changes in feelings or personality? „ Yes „ No „ Yes „ No „ Yes „ No „ Yes „ No „ Yes „ No „ Yes „ No „ Yes „ No zz Forgetting recent events zz Repeating questions zz Money management zz Shopping zz Preparing dinner zz Forgetting the date and time of appointments zz Difficulty expressing oneself zz Difficulty finding the right words zz Not finding common objects, such as keys zz Suspecting things are stolen zz Showing decline in social activity zz Lacking urge to do something zz Having a lot of ups and downs zz Becoming more anxious than before Examples MODULE 1 In tro du ct io n to d em en tia iS u p p o rt In te rv e n ti o n M an u al 7 4. What to do if you think that the person you care for has dementia? If you think that a family member or friend may have dementia, a good first step is to make sure that they see a medical doctor. The doctor will examine their body and brain functioning. One important point to rule out is whether the person’s memory problems are caused by other treatable conditions such as depression, urinary tract infection, medication side effects, lack of vitamins or a brain tumor. It is important to identify whether the person’s memory problems are really part of dementia or are part of something else. Only a medical doctor can do this, not this manual. What is the first step if you think that a family member or friend has dementia? Please put a check mark () in front of the answers that you think are correct and a cross () in front of those that are wrong. „ Call a friend or relative. „ Use iSupport alone for help. „ Call a medical doctor’s office and make an appointment. „ The person has been to a medical doctor already and has been diagnosed with dementia. First steps MODULE 1 2. Check your understanding What to do if you think that the person you care for has dementia? In tro du ct io n to d em en tia iS u p p o rt In te rv e n ti o n M an u al 8 5. How to reach out for help? It is important to realize that you, alone, are not going to be able to provide all the care that the person living with dementia needs, especially not as things get more complex over time. So, we encourage you to reach out to family members, friends, and professional organizations or services for help. In many countries there are several resources that are very helpful. Some are free while others are not. Please contact your local Alzheimer’s Association for information, support and care that is available in your area and could benefit the person you care for as well as yourself. 6. What is the focus of this manual? The focus is on you, a carer of someone with dementia. Dementia can be overwhelming. For this reason, iSupport provides you with support to cope with caregiving on a day- to-day basis. It is really important that you not only take care of the person living with dementia but also take care of yourself. iSupport will show you how. It will also show you some common scenarios that might happen with people with dementia so that you are aware and can practice how to respond to such situations. Keep in Mind z Dementia affects a person’s brain. z Dementia is common, especially in older people. z Dementia is a disease, not a part of ageing. z As a first step it is important to see a medical doctor, if possible. z It is important for you to take care of yourself, not only the person you care for. z iSupport can support you as a carer. MODULE 1 In tro du ct io n to d em en tia iS u p p o rt In te rv e n ti o n M an u al 9 MODULE 1 In tro du ct io n to d em en tia You finished this lesson, well done! iS u p p o rt In te rv e n ti o n M an u al 10 People with dementia often forget things or have trouble with their memory. 9 True: This is the correct answer. 8 False: This is the incorrect answer. The right answer is that people with dementia often forget things or have trouble with their memory. What is the first step if you think that the person you care for has dementia? 8 ✗Call a friend or relative While friends and family can offer support, this cannot replace a medical exam given by a certified medical doctor. 8 Use iSupport alone for help While this manual provides information and support, it cannot replace a medical exam given by a certified medical doctor. 9 Call a medical doctor’s office and make an appointment This is the best first step if you have not done so already. 9 The person has been to a medical doctor already and has been diagnosed with dementia You have already completed the first important step. MODULE 1 1. Check your understanding What happens to people with dementia? 2. Check your understanding What to do if you think that the person you care for has dementia? ANSWERS - INTRODUCTION TO DEMENTIA AN SW ER S - IN TR OD UC TI ON TO D EM EN TI A M od ul e 2 . B ein g a c ar eg ive r BEING A CARER Lesson 1. The journey together Lesson 2. Improving communication Lesson 3. Supported decision-making Lesson 4. Involving others 2 MODULE iS u p p o rt In te rv e n ti o n M an u al 12 1. How may your roles change over time? You may feel as if your role is changing. In the early stages of dementia, you may still be able to enjoy many different activities together. As dementia progresses, the person will have more difficulty with everyday tasks. This will require a carer to do more to help with everyday life, such as giving medications and taking the person with dementia to appointments. In the middle and later stages of dementia, a carer might need to do even more for the person with dementia. This may include personal care, such as bathing, going to the toilet and dressing. Some tasks may be challenging for carers and cause stress. Why is this lesson important? Dealing with dementia is a journey you will take together, because it changes the daily life of both the person living with dementia and the carer. How will this lesson help me? This lesson teaches you skills for your journey together: to stay connected, involve others, take care of yourself, and plan for the future. What will I learn? 1. How may your roles change over time? 2. How to stay connected with the person you care for? 3. How to plan pleasant activities and relaxation? 4. How to involve others? 5. How to plan well for the future? Lesson 1. The journey together MODULE 2 Le ss on 1 . T he jo ur ne y t og et he r iS u p p o rt In te rv e n ti o n M an u al 13 Olivia has dementia and lives with her husband Jacob. During the past few months, Olivia’s memory loss seems to be more frequent. The last few times Olivia went shopping, she could not remember what to buy. She came home with the wrong things, which was frustrating. Let's look at an example How should Jacob approach Olivia about what happened? Check all the responses you feel are appropriate. „ Leave Olivia alone and see what happens. „ Ask Olivia to ‘work harder’ to remember things. „ Do not let Olivia shop anymore. „ Ask Olivia how she feels about her memory loss. „ Do not blame Olivia, but make a shopping list together with her each time prior to shopping. 1. Check your understanding Frustration about memory loss. MODULE 2 Le ss on 1 . T he jo ur ne y t og et he r iS u p p o rt In te rv e n ti o n M an u al 14 2. How to stay connected with the person with dementia? Here are some small tips to help you communicate better with someone living with dementia: z use simple sentences; z try to stay in control of your feelings; z create time for yourself and for each other. For more tips on how to improve communication with the person living with dementia, including in the later stages of the disease, read Lesson 2. Improving communication in this module. Tip MODULE 2 Le ss on 1 . T he jo ur ne y t og et he r It is important to keep talking together. The sooner you start talking about dementia and its effects on you and the person you care for, the better. Dementia will make doing this more difficult as time goes by. Talk about the changes happening now and what might happen in the future. Stay connected with each other and discuss the changes that may occur over time. It is important to keep talking together. iS u p p o rt In te rv e n ti o n M an u al 15 Providing care may become increasingly time consuming as the disease progresses. Sometimes carers do not take enough time for themselves. It is really important to try and take care of yourself as best as you can, as some carers may break down from the stress. Part of the journey together should include planning pleasant activities and relaxation for yourself. For more tips on how to relax, read Lesson 1. Reducing stress in everyday life in Module 3. For more tips on how to stay in control of your feelings read Lesson 3. Thinking differently in Module 3. For more tips on how to plan pleasant activities for yourself, read Lesson 2. Making time for pleasant activities in Module 3. 3. How to plan pleasant activities and relaxation? MODULE 2 Le ss on 1 . T he jo ur ne y t og et he r Taking care of yourself is important. iS u p p o rt In te rv e n ti o n M an u al 16 Caregiving can sometimes challenge friendships and relationships. It is common for people providing care to feel that no one understands what they are going through. Talking about your thoughts and feelings with others might help make you feel better. 4. How to involve others? Caring for someone with dementia does not have to be a lonely experience. Let friends and family members know when you could use a break. Caring for a loved one with dementia is sometimes too big a job for one person. Molly’s mother-in-law, Jess, has dementia. Molly has a big deadline at work and needs to leave at 7:30 the next morning. The paid in-home helper is not able to arrive until 9:00 in the morning. This leaves Jess alone for over an hour. Molly wonders whether it would be okay to leave Jess alone and feels stressed because she is not sure what to do. How could Molly deal with the situation? Check all of the responses that you feel are appropriate. „ Leave Jess alone and see what happens. „ Ask a neighbour to come visit Jess until the paid in- home helper arrives. „ Ask Jess to ‘take care of herself’. „ Ask her husband to go into work late so he can be with Jess until the paid in-home helper arrives. „ Ask the paid in-home helper to come in early. 2. Check your understanding Feeling stressed due to conflicting duties. MODULE 2 Le ss on 1 . T he jo ur ne y t og et he r iS u p p o rt In te rv e n ti o n M an u al 17 5. How to plan well for the future? Preparing for the future is a topic that will need to be discussed. You will need to make decisions with the person you care for about preferences for who might provide care, planning for the costs of future care needs, and preferences in case of more advanced care needs and end of life decisions. Many people providing care, like you, worry about the future. The earlier you plan for the future, the better and easier it will be for you. Planning early will also ensure that the person you care for will be better able to say what their wishes are. Where possible, discuss topics that concern you. Here are some common questions that carers have. You may want to discuss these with the person you care for. Write down the responses to the questions. What are the person’s preferences when they are no longer able to bathe themselves? For example, would they prefer a male or female to help bathe them? How do they feel about having a close family member bathe them or would they prefer a qualified professional who is unrelated? What does the person you care for want to do themselves for as long as possible? MODULE 2 Le ss on 1 . T he jo ur ne y t og et he r 1. Activity iS u p p o rt In te rv e n ti o n M an u al 18 MODULE 2 Le ss on 1 . T he jo ur ne y t og et he r 1. Activity What are their wishes at the end of life? If you find it helpful, please write down the questions that you might want to discuss in the space below. If more assistance is needed at home, what kind of help would the person you care for prefer now and/or in the future? iS u p p o rt In te rv e n ti o n M an u al 19 What are some ways that Jacob and Olivia can maintain their intimacy as Olivia’s dementia progresses? Think about it before reading on. MODULE 2 Le ss on 1 . T he jo ur ne y t og et he r 2. Activity Let’s revisit the scenario with Olivia and Jacob Intimate relationships may change As you progress through the journey together, partners may experience some changes in their intimate relationship. At first, sexual relationships between partners may still be possible. As the disease progresses, sexual relationships and physical intimacy may become more difficult. Olivia is in the early stages of dementia and lives with her husband Jacob. Olivia and Jacob have a healthy, mutually satisfying physical relationship, but Jacob is worried about the day when these relations may stop. iS u p p o rt In te rv e n ti o n M an u al 20 Ways to stay connected z Use touch, hold hands or do a gentle massage to communicate warmth, connection, safety and love. z Use music – it is truly a universal language. Play music that the person you care for likes and that makes them feel good. z Try to maintain your sense of humour. This will help reduce frustration and tension. z Talk with them about what they like and need – it’s an important conversation to have more than once, as things change over time. z It is okay to take a break. z It is okay to ask for help. z It is okay to feel frustrated sometimes. z It is okay to feel lonely sometimes if you feel that the person you care for is no longer able to meaningfully communicate with you. Taking care of yourself One of the most important things to remember as roles change is that you, as someone providing care for a person with dementia, need to care for yourself too. Throughout this manual we will teach you ways to do this. Here are some tips for partners on how to maintain intimacy, even when sexual relations may no longer be possible with the person living with dementia. MODULE 2 Le ss on 1 . T he jo ur ne y t og et he r Tip Reminder iS u p p o rt In te rv e n ti o n M an u al 21 z As your role changes, it is important to stay connected during your journey together. z Make sure that you plan pleasant activities and relaxation so that your role does not become overwhelming. z Ask for help because providing care to someone with dementia can be tiring. z Make sure that you plan well for the future. z There are many different ways to maintain intimacy and stay connected. Let’s review what you have learned For more tips on how to relax, read Lesson 1. Reducing stress in everyday life in Module 3. MODULE 2 Le ss on 1 . T he jo ur ne y t og et he r You finished this lesson, well done! iS u p p o rt In te rv e n ti o n M an u al 22 9 Ask Olivia how she feels about her memory loss This is a good response because Jacob is addressing the issue by discussing its impact on Olivia and staying ‘connected’. Jacob could also share his own worries about he memory loss. 9 Do not blame Olivia, but make a shopping list together with her each time prior to shopping. This is a very good response, because this will help Olivia to continue shopping and maintain her independence as long as possible. How should Jacob approach Olivia about what happened? 8 Leave Olivia alone and see what happens This is not a helpful response, because Olivia and Jacob both feel frustrated. To stay connected it is important to talk about their frustration and worries about the future. 8 Ask Olivia to ‘work harder’ to remember things This is not a good response, because memory loss is part of living with dementia, it is unlikely to change. 8 Do not let Olivia shop anymore. This is not a good response because doing the shopping is important to Olivia. Shopping may give Olivia purpose in life and a feeling of dignity. ANSWERS - BEING A CARER Lesson 1. The journey together MODULE 2 1. Check your understanding Frustration about memory loss. AN SW ER S - B EI NG A C AR ER • Le ss on 1 iS u p p o rt In te rv e n ti o n M an u al 23 How could Molly deal with the situation? 9 Ask a neighbour to come visit Jess until the paid in- home helper arrives. This is helpful because it ensures Jess’ safety. Molly can do her work and also gets a short break from caregiving. 9 Ask her husband to go into work late so that he can be with Jess until the paid in-home helper arrives. This is a good response. It shows that Molly is trying to involve her family members for support and gives her the break that she needs. 9 Ask the paid-in home helper to come in early. This is a good response but it may not be possible because of the short notice. 8 Leave Jess alone and see what happens. This is not a good response, because it potentially puts Jess in danger and Molly will not be able to perform well at work with the added stress of leaving Jess. 8 Ask Jess to ‘take care of herself’. This is not a good response because her dependence on others is part of living with dementia and unlikely to change. MODULE 2 2. Check your understanding Feeling stressed due to conflicting duties. AN SW ER S - B EI NG A C AR ER • Le ss on 1 iS u p p o rt In te rv e n ti o n M an u al 24 Why is this lesson important? Dementia can often make communication difficult. How will this lesson help me? This lesson helps you to talk in a simple and direct way and show your compassion in everyday situations. What will I learn? 1. How to improve communication? 2. How to check the person’s ability to hear and see? 3. How to get attention in a respectful way? 4. How to keep it simple? 5. How to take the person seriously? 6. How to pay attention to reactions? 7. How to give compliments? 8. How to show compassion? 1. How to improve communication? In this lesson you will learn about tools and tips for good communication. Dementia can often make communication difficult. This can have an impact on your relationship with the person you care for. It can even make them or you frustrated, sad or angry. When you communicate with the person you care for, for example by talking to them or giving them a hug, make sure that they understand what you mean by your action and that you understand them too. Lesson 2. Improving communication MODULE 2 Le ss on 2 . I m pr ov in g co m m un ica tio n iS u p p o rt In te rv e n ti o n M an u al 25 For all communication - talking, touching or gestures – the basics, like the ability to see and hear, are important. Unfortunately, dementia may impair someone’s ability to hear and see. Therefore, it is important that you check whether the person's hearing and sight could be improved by making changes in their environment or arranging for any relevant medical check-ups. 2. How to check the person’s ability to hear and see?Show compassion by listening, take the person you care for seriously, treat them with respect and dignity, show interest, or give them a smile or a hug. This is very important for every human being, including people with dementia. In this lesson we help you to show compassion. Some important basic skills for communication will be explained. MODULE 2 Le ss on 2 . I m pr ov in g co m m un ica tio n Imagine for a moment that you are living with dementia. What would you like other people to do? Please select all that apply. „ Listen to how you feel. „ Talk behind your back. „ Give you a smile. „ Say that they do not care. „ Tell you that they love you. „ Treat you like a child. „ Approach you with respect and dignity. 1. Check your understanding Imagine that you are living with dementia. iS u p p o rt In te rv e n ti o n M an u al 26 Exercise to improve sight The ability to see is important for communication. Check the items below to help improve sight. In general, people with dementia need more light to see clearly. Increase light levels and use daylight where possible. It will help the person living with dementia to see well. You may also think of leaving lights on at night so the person can find the bathroom. Dementia can make it hard to see contrasts. For example, if there is a white plate on a white table, people with dementia may have difficulty seeing the plate. A coloured plate or tablecloth may help. Does the person living with dementia lose or misplace their glasses frequently? Encourage them to always put the glasses in the same spot to reduce frustration over having to look for them. Sometimes a neck cord is also helpful in that case. If the person living with dementia wears glasses, check whether they are clean and still comfortable to wear. Are the glasses comfortable around the ears and nose? If the person living with dementia does not have glasses, but cannot see well anymore, consult a doctor. If the person living with dementia wears glasses, check to see if the prescription is still accurate, or consult a doctor. Is there enough light? „ Yes „ No „ Yes „ No „ Yes „ No „ Yes „ No „ Yes „ No Is there enough contrast in colours? Is the person living with dementia wearing their glasses? Are the glasses still okay? Do you need to consult a doctor? Tips 1. Activity MODULE 2 Le ss on 2 . I m pr ov in g co m m un ica tio n iS u p p o rt In te rv e n ti o n M an u al 27 Exercise to help improve hearing The ability to hear is important for communication. Check the items below to help improve hearing. Minimizing background noise will help to improve hearing. Perhaps take the person living with dementia to a quieter location with fewer distractions. Turn off the television or radio when trying to communicate with them. The person living with dementia may forget to wear the hearing aid or require help or assistance with putting it in properly. If the person living with dementia is wearing a hearing aid, check whether it is clean, fits snugly in the ear canal, is still comfortable to wear and the batteries are charged. If the person living with dementia wears a hearing aid, check if the prescription is still accurate, or whether you need to consult a doctor. If the person living with dementia does not have a hearing aid, but cannot hear well anymore, you should also consult a doctor. Is there too much noise? Is the hearing aid still okay? Do you need to consult a doctor? If the person living with dementia has a hearing aid, is he/she wearing it? Tips MODULE 2 Le ss on 2 . I m pr ov in g co m m un ica tio n 2. Activity „ Yes „ No „ Yes „ No „ Yes „ No „ Yes „ No iS u p p o rt In te rv e n ti o n M an u al 28 3. How to get attention in a respectful way? The person living with dementia is a person with feelings, no matter how serious the disease is or how advanced communication problems are. Therefore, an important first step is to make contact with the person you care for by catching their attention. Below are some suggestions regarding how to capture the attention of a person living with dementia. Please put a check mark () in front of the answers that you think are correct and a cross () in front of those that are wrong. „ Raise your voice or shout. „ Speak clearly and slowly, at a volume that is comfortable for the person, face to face and at eye level. „ Tap a hand, arm or front of the shoulder. „ Stop and hold the person to make him or her listen. „ Approach the person from the back and touch their shoulder. „ Call the person living with dementia by a name that they recognize. MODULE 2 Le ss on 2 . I m pr ov in g co m m un ica tio n 2. Check your understanding Get attention in a respectful way. z Gaining attention is a first important step for good communication. z There are different ways to gain the attention of a person living with dementia in a respectful manner. Remember iS u p p o rt In te rv e n ti o n M an u al 29 Jonathan takes care of his father who has dementia. Jonathan notices that his father does not understand him. Can you tell why? Check the items in the list below that you think could impair communication between Jonathan and his father. „ The radio is on. „ Jonathan is making a phone call. „ Jonathan asks multiple questions at the same time. z Ask or tell the person living with dementia one thing at a time. z Use simple language and keep sentences short. Avoid long and complicated sentences, focus on one subject at a time. z When needed, change from open-ended to closed-ended questions that can be answered with YES or NO. z Make sure there are no distracting background noises such as a television or radio. Often the language we use to get a message across is too complicated. Keeping it simple will help the person you care for understand you better. 4. How to keep it simple? MODULE 2 Le ss on 2 . I m pr ov in g co m m un ica tio n Keep in Mind 3. Check your understanding Keep it simple. iS u p p o rt In te rv e n ti o n M an u al 30 At some point, you may not understand what the person you care for means. The language they use may even seem strange or funny. However, it is important that you take them seriously. The person you care for is trying to tell you something, even though their communication skills may be impaired due to the dementia. 5. How to take the person seriously? MODULE 2 Le ss on 2 . I m pr ov in g co m m un ica tio n It is important that you take the person you care for seriously. iS u p p o rt In te rv e n ti o n M an u al 31 John is visiting his father who has dementia. When his father wants to describe his morning to John, he cannot find the right words. John says to his wife in front of his father: “I have no clue what he means!” His wife answers: “Yes, I don’t know either. He is just like a child!” Let's look at an exampleMODULE 2 Le ss on 2 . I m pr ov in g co m m un ica tio n Which of the following statements do you think is correct? Check all the responses that you feel are appropriate. „ John should not talk about his father when he is in same the room. John could have said: “It is difficult to understand what you mean.” In addition, he could have asked some questions that his father could have answered with ‘YES’ or ‘NO’. For example: “Have you gone outside this morning?” „ John and his wife could be more patient. „ John and his wife could ask John’s father if it is okay when they try to guess what he wants to say. „ It is important that John and his wife talk about the difficulty to understand John’s father in front of him. „ His wife is right: a person living with dementia is just like a child. 4. Check your understanding Take the person seriously. z It is important to take the person that you are caring for seriously and treat them with respect and dignity. z Do not talk about them in their presence. z Be patient and give them time to find the right words. z When the person you care for is difficult to understand, it may help to ask closed- ended questions that can be answered with YES or NO to understand what they mean. Remember iS u p p o rt In te rv e n ti o n M an u al 32 Take a look at the cartoons below. Do you understand these feelings? Select the right answer for each cartoon. You can tell a lot from the way someone speaks and looks. For example, if someone is smiling, you can assume that this person is in a good mood. Keeping this in mind will help you communicate with the person you care for. 6. How to pay attention to reactions? Happy Angry Sad Scared Happy Angry Sad Scared Happy Angry Sad Scared Happy Angry Sad Scared z Facial expressions and body language tell us how a person is feeling. Other examples of body language include fidgeting, having arms crossed or pacing. These can give us messages about how the person may be feeling. For example whether the person may be nervous, upset or anxious. z Take notice of the responses and body language of the person you care for. MODULE 2 Le ss on 2 . I m pr ov in g co m m un ica tio n 5. Check your understanding Pay attention to reactions. Keep in Mind iS u p p o rt In te rv e n ti o n M an u al 33 7. How to give compliments? Complimenting the person you care for is important. In general, it is much more effective to say what someone is doing well, than to say what they are doing wrong. A compliment can range from commenting that someone has done something well to saying that they look nice. You can give compliments in different ways and in different situations. Here is a list of statements. These statements include several compliments. However, there are also some statements that are not compliments. Please put a check mark () in front of the statements that are compliments and a cross () in front of those that are not. „ You look beautiful. „ You are good at ... „ What are you doing?! Stop it! „ You are very helpful. Thank you. „ You are making a mess. „ You should be ashamed of forgetting everything. „ I love having you around. „ You are driving me crazy. „ You have a great smile. Statements MODULE 2 z The person you care for will feel good if you say something positive. z Compliments can be given in many different ways. z Saying something negative will make a person feel bad. Keep in Mind 6. Check your understanding Give compliments. Le ss on 2 . I m pr ov in g co m m un ica tio n iS u p p o rt In te rv e n ti o n M an u al 34 Think about all the things that you like about the person you care for. Now try to write down something you would say to give them a compliment. MODULE 2 3. Activity Le ss on 2 . I m pr ov in g co m m un ica tio n iS u p p o rt In te rv e n ti o n M an u al 35 It is important that you show compassion, even if a person living with dementia is repeating the same questions over and over again, or understanding each other becomes increasingly difficult. You need to remember that dementia is a disease that can make communication difficult. For example, a person living with dementia may have forgotten what they just said. You need to use extra effort and be patient with the person you care for. 8. How to show compassion? MODULE 2 Le ss on 2 . I m pr ov in g co m m un ica tio n William often visits his sister, Elena, who lives with dementia. Elena’s husband passed away six months ago. When William is visiting, Elena often asks where her husband is. William finds this difficult. He knows Elena is missing her husband and may have forgotten that he died. William tries to distract her by asking questions about other things, such as: ”How was your day?” Elena persists in asking where her husband is. Today William tries a different approach William says to Elena: “It must be difficult for you that he died”. He gives Elena a hug. William shows Elena some pictures of her husband that he brought from home and talks to her about her husband. William showed that he understands that Elena is missing her husband and tries to support her. Let's look at an example Did William respond well? Please select the correct answer below. „ YES „ NO Did William respond well? Please select the correct answer below. „ YES „ NO 7. Check your understanding How to show compassion (1). 8. Check your understanding How to show compassion (2). iS u p p o rt In te rv e n ti o n M an u al 36 Keep in mind that people with dementia also have the right to grieve the loss of a loved one in a safe and supportive setting. The example of William and his sister, Elena, shows that: z You can show compassion in different ways. z It is important to take a person living with dementia seriously and to pay attention to the questions they have. z Showing compassion helps to improve your relationship with the person you care for. You have practiced the following communication skills: z check ability to hear and see; z get attention in a respectful way; z keep it simple; z take the person seriously; z pay attention to reactions; z give compliments; z show compassion. Let’s review what you have learned MODULE 2 Le ss on 2 . I m pr ov in g co m m un ica tio n You finished this lesson, well done! iS u p p o rt In te rv e n ti o n M an u al 37 MODULE 2 ANSWERS - BEING A CARER Lesson 2. Improving communications What would you like other people to do? 9 Listen to how you feel 8 Talk behind your back 9 Smile at you 8 Say that they do not care 9 Tell you that they love you 8 Treat you like a child 9 Approach you with respect and dignity 1. Check your understanding Imagine that you are living with dementia. AN SW ER S - B EI NG A C AR ER • Le ss on 2 iS u p p o rt In te rv e n ti o n M an u al 38 MODULE 2 8 ✗Stop and hold the person to make them listen. This is not a respectful way to get attention. It may even make the person living with dementia feel distressed or angry. 8 Approach from the back and touch the person’s shoulder. This may startle someone who is not expecting you or perhaps did not hear you coming. 9 Call the person living with dementia by a name that he or she recognizes. This is a good way to attract the attention of a person living with dementia. You might use their first name or a nickname that was used in the past. Below are some suggested ways to get the attention of a person living with dementia. What are the right and wrong answers? ✗ 8 Raise your voice or shout. Raising your voice is not a respectful way to gain attention. It may even make the person living with dementia feel sad, frustrated or angry. 9 Speak clearly, slowly, at a volume that is comfortable for the person, face to face and at eye level. This is an appropriate way to make contact. It shows that you are seeking contact in a respectful manner. 9 Tap a hand, arm or front of the shoulder. This is a good way to attract the attention of a person living with dementia. 2. Check your understanding Get attention in a respectful way. AN SW ER S - B EI NG A C AR ER • Le ss on 2 iS u p p o rt In te rv e n ti o n M an u al 39 Jonathan takes care of his father who has dementia. Jonathan notices that his father does not understand him. Can you tell why? 9 The radio is on. Very good! A radio can be very distracting. It makes it difficult to follow what someone else is saying, especially for people with dementia who can have difficulty concentrating. 9 Jonathan is making a phone call. Very good! Making a phone call does not show interest and will confuse his father. It’s important for people with dementia to try and stay focused on one task. It will be difficult to get back on the same subject after making a phone call. 9 Jonathan asks multiple questions at the same time. Correct! Asking too many questions at the same time makes it difficult for his father to understand. MODULE 2 3. Check your understanding Keep it simple. AN SW ER S - B EI NG A C AR ER • Le ss on 2 Which of the following statements do you think is correct? 9 John should not talk about his father when his father is in same the room. He could have said, “It is difficult to understand what you mean.” In addition, he could have asked some questions that his father could have answered with ‘YES’ or ‘NO’. For example: “have you gone outside this morning?” Correct! John takes his father seriously when trying to understand what he wants to say. Do not talk about the person you care for while they are in the same room. 9 John and his wife could be more patient. Correct! It takes people with dementia longer to find the right words and they need time and patience to be understood. 9 John and his wife could ask John’s father if it is okay when they try to guess what he wants to say. This is a correct answer because some people with dementia appreciate help with finding the right words or fill in sentences. 4. Check your understanding Pay attention to reactions. iS u p p o rt In te rv e n ti o n M an u al 40 MODULE 2 AN SW ER S - B EI NG A C AR ER • Le ss on 2 Take a look at the cartoons below. Do you understand this feeling? Select the right answer below. Happy 9 Angry Sad Scared 9 Happy Angry Sad Scared Happy Angry 9 Sad Scared Happy Angry Sad 9 Scared 5. Check your understanding Pay attention to reactions. 9 You look beautiful. 9 You are good at … 8 What are you doing?! Stop it! 9 You are very helpful. Thank you. 8 You are making a mess. 8 You should be ashamed of forgetting everything. 9 I love having you around. 8 You are driving me crazy. 9 You have a great smile. 6. Check your understanding Give compliments. iS u p p o rt In te rv e n ti o n M an u al 41 Did William respond well in the first example? 8 No Will wants to distract his sister’s attention because he knows she is missing her husband and will be sad to be reminded that he died. Although Will has the best intentions, ignoring her questions is not the right way to respond especially because his sister persists in asking. Did William respond well in the second example? 9 ✓Yes It is important to try different responses to identify the one which will cause the less distress. Initially William tried to distract his sister with no success. Today, by showing his sister pictures of her husband, they had a good conversation about him. MODULE 2 7. Check your understanding How to show compassion (1). 8. Check your understanding How to show compassion (2). AN SW ER S - B EI NG A C AR ER • Le ss on 2 iS u p p o rt In te rv e n ti o n M an u al 42 Why is this lesson important? Making decisions can become more difficult for a person living with dementia over time. How will this lesson help me? By practicing how to support a person living with dementia to make their own decisions for as long as possible or to assist in making decisions in the person’s best interest. What will I learn? 1. Why is support in decision-making needed? 2. How to make decisions in someone’s best interest? 3. How to support someone with dementia to make everyday decisions? 4. How to support someone with dementia to make everyday decisions as the dementia progresses? 5. How to support someone with dementia in making complex decisions? 1. Why is support in decision-making needed? Supporting someone with dementia to make their own decisions is very important. Like everyone else, people living with dementia have the right to participate in all decisions that affect their lives and wellbeing. However, making decisions may become difficult due to the progression of dementia. Sometimes this results in relatives taking over decision- making, instead of supporting people with dementia to make their own decisions. In this lesson, you will learn how you can support the person you care for when they need to make a decision. Lesson 3. Supported decision-making MODULE 2 Le ss on 3 . S up po rte d de cis io n- m ak in g iS u p p o rt In te rv e n ti o n M an u al 43 z Memory loss Having memory loss will cause someone with dementia to sometimes forget the information that is needed to make a decision. z Problems with thinking or difficulties identifying and describing what someone with dementia thinks When a person living with dementia has problems thinking or describing what they are thinking, it might be more difficult for them to make a decision and share it with you. z Problems with making complex decisions Complex decisions, such as deciding whether or not to go outside alone, can be more challenging, therefore support is important. MODULE 2 Le ss on 3 . S up po rte d de cis io n- m ak in g Everybody needs to make decisions, whether they are big or small. Because the person you care for has dementia, your support is needed to help them clarify what they want. Decisions in line with the interests, needs and wishes of the person you care for will make them more independent. Decision-making can be difficult Why do you think decision-making can be difficult for a person living with dementia? Have a look at the reasons below to find out more. 2. How to make decisions in someone's best interest? iS u p p o rt In te rv e n ti o n M an u al 44 MODULE 2 1. Activity Le ss on 3 . S up po rte d de cis io n- m ak in g Do you support the person you care for to make decisions? You may want to write down the ways that you support their decision-making: Think about your own situation z Making decisions will become more difficult as the dementia progresses. z Your support for the person you care for to make their own decisions is needed. z Enabling them to make their own decisions might not be easy because of their dementia. iS u p p o rt In te rv e n ti o n M an u al 45 It is important to encourage the person you care for to do whatever they are still able to do. Supporting them in making decisions will help them to be more independent. Supporting them in making decisions might also improve their self-esteem. Manuel has Alzheimer's disease and is married to Maria. Manuel always used to lay out his clothes for the next day in the evening. Now he has dementia, he forgets to do so and sometimes wears the same clothes everyday. Let's look at an example 3. How to support someone with dementia to make everyday decisions? MODULE 2 Le ss on 3 . S up po rte d de cis io n- m ak in g z It is important to encourage the person that you care for they continue doing whatever they are still able to do. z Supporting the person you care for in making decisions will help them be more independent. z Support the person you care for in making decisions may add to their self-esteem. Keep in Mind1. Check your understanding Support for making everyday decisions. What do you think is the best way to make sure that Manuel wears clean clothes, without taking over his decisions at the same time? „ Before Maria and Manuel go to bed, Maria asks Manuel what he wants to wear the next day. She then asks Manuel to lay them out. „ Maria chooses clothes for Manuel and she asks him to lay them out. „ Maria chooses clothes for Manuel in the morning and gives them directly to Manuel to wear. iS u p p o rt In te rv e n ti o n M an u al 46 4. How to support someone with dementia to make everyday decisions as the dementia progresses? Let's look at an example After some time, Manuel feels stressed when choosing his clothes for the next day with Maria. He starts to worry about everything else he needs to do the next day and becomes anxious. This makes it difficult for Maria to support Manuel in making his decision. MODULE 2 Le ss on 3 . S up po rte d de cis io n- m ak in g z Supporting someone with dementia in making their own choices is possible, even as dementia progresses. z It may help to simplify decisions by limiting the number of choices or discuss the situation at a better time when the person is in a better mood or less worried. Remember What should Maria do? Please check all the responses that you feel are appropriate. „ Instead of supporting Manuel to choose his clothes the evening before, she asks him in the morning, at the beginning of the day. „ Maria lays out Manuel’s clothes in the evening. „ When Maria asks Manuel what he wants to wear she can give him only a few choices and, for example, ask him whether he wants to wear his blue or black trousers. 2. Check your understanding Support for making decisions as the dementia progresses. iS u p p o rt In te rv e n ti o n M an u al 47 5. How to support someone with dementia to make complex decisions? There comes a time in the course of dementia when someone may not be able to make complex decisions anymore, such as decisions concerning medical treatment. MODULE 2 Le ss on 3 . S up po rte d de cis io n- m ak in g What should the doctor and Chrissy do? Multiple answers are correct. „ Mary says what she wants, so she does not need support in making the decision whether or not to start with the medication. „ The doctor says that she should take the medication because it is good for her health. „ The doctor explains that taking the medication is good for her health, because it will slow down further damage in her brain because of her dementia. „ Her daughter says: "Mom, you know that you are forgetting things and that you have difficulties to find the right words when you want to say something. By taking the medication these problems may slow down a bit." 3. Check your understanding Support for making complex decisions (1). Let's look at an example Mary has vascular dementia and is taken care of by her daugther Chrissy. The doctor advises Mary to start using medication for her blood pressure. Mary says that she does not want to take pills because she does not understand why she needs them. iS u p p o rt In te rv e n ti o n M an u al 48 MODULE 2 Le ss on 3 . S up po rte d de cis io n- m ak in g What do you think are reasons that Jack can no longer make the decision himself? Please check all the responses that you feel are appropriate. „ Jack is unable to understand the information that is relevant to making the decision. „ Jack does not agree with the doctor. „ Jack is unable to communicate his decision (by talking, using body language or any other means). „ Jack is unable to use or weigh the information as part of the decision-making process. 4. Check your understanding Support for making complex decisions (2). Let's look at another example Jack who has dementia lives with his wife, Ella. Jack’s condition deteriorates. Ella decides to make an appointment with the doctor without Jack to discuss his medical condition and to make a decision regarding his medication. Ella discusses the issue with Jack’s sister as well, who asks her what she thinks Jack would have decided before he was diagnosed with dementia. Ella talks to the doctor and tries to imagine what Jack would have decided if given all the information. iS u p p o rt In te rv e n ti o n M an u al 49 The capacity to make a decision may be affected by the following considerations: z The type of decision being made. Someone with dementia might still be able to choose what kind of clothes to wear, but perhaps not whether to take medicines. z Change over time. Imagine that Jack had a severe infection that made him very confused. After this infection is cured, he might be able again to decide whether or not to take the medication. z Can be difficult to assess. Sometimes it is not clear, in which case there is no other alternative other than to help the person living with dementia make a decision that is in their best interest. MODULE 2 Le ss on 3 . S up po rte d de cis io n- m ak in g z Someone with dementia can be involved in making complex decisions, such as medical decisions, with the right support. z Support for making complex decisions should focus on providing correct information to help the person you care for understand what the consequences of the decision are. Remember iS u p p o rt In te rv e n ti o n M an u al 50 You can make decisions in the best interest of a person living with dementia by taking the following aspects into account. z Their past and present wishes and feelings (and, in particular, any relevant statement written when they did not have dementia). z Beliefs and values that may have influenced the person’s decision when he or she did not have dementia. z The views of anyone named by the person you care for as someone to be consulted to help with making decisions. z Be aware that the best interest of the person you care for is not always the same as your own best interest or that of other family members. In the end, it is the best interest of the person you care for that counts, since the decision concerns them. z Take into account that someone’s past wishes can be different from their present ones. Preparing for decisions To prepare for decisions that you might have to make for the person living with dementia it is important to: z Gather the information you need to make informed choices for the person as early in the course of the disease as possible. z Talk about decisions with your family, friends, doctor and any others close to you to help with decisions that are important to you both. z Prepare instructions that accurately reflect the wishes of the person living with dementia, in accordance with your country’s law (advance directives), and inform each other and your doctor about your preferences and decisions concerning medical treatment. MODULE 2 Le ss on 3 . S up po rte d de cis io n- m ak in g Remember iS u p p o rt In te rv e n ti o n M an u al 51 Think of the following choices when you prepare instructions that accurately reflect the wishes of the person you care for. MODULE 2 Le ss on 3 . S up po rte d de cis io n- m ak in g 2. Activity z Where does the person you care for prefer to live if it is no longer possible to stay at home? z What aspects of home/community/facility care are important to the person you care for? z Who does the person you care for want in charge of their finances when they are no longer capable of doing it? z How does the person you care for want to be treated at the end of their life? z Are there medical treatments that the person you care for wants to receive or refuse? z What does the person you care for want when eating is no longer possible? Would they want to get a feeding tube? z Does the person you care for have any particular fears or concerns about medical treatments? iS u p p o rt In te rv e n ti o n M an u al 52 You finished this lesson, well done! MODULE 2 Le ss on 3 . S up po rte d de cis io n- m ak in g iS u p p o rt In te rv e n ti o n M an u al 53 9 ✗Before Maria and Manuel go to bed, Maria asks Manuel what he wants to wear the next day. She then asks Manuel to lay them out. This is the right answer! This way Manuel is encouraged to do the things he is still able to do. 9 Maria chooses clothes for Manuel and she asks Manuel to lay them out. This answer is okay. It is good that Manuel is encouraged to lay out his clothes himself; however, it would have been better if Maria supported Manuel in making his own decision about what to wear. What do you think is the best way to make sure that Manuel wears clean clothes, without taking over his decisions at the same time? 8 Maria chooses clothes for Manuel in the morning and gives them directly to Manuel to wear. This is not a good option. Maria is taking control away from Manuel. It would be better if she supported him in making his own decision and encouraged him to do the things which he is still able to do, such as laying out the clothes. MODULE 2 ANSWERS - BEING A CARER Lesson 3. Supported decision-making 1. Check your understanding Support for making everyday decisions. AN SW ER S - B EI NG A C AR ER • Le ss on 3 iS u p p o rt In te rv e n ti o n M an u al 54 What should Maria do? 9 Instead of supporting Manuel in choosing what he wants to wear in the evening for the next day, she asks him in the morning at the beginning of the day. Correct! Maria still supports Manuel in deciding what he wants to wear, but he will not start to worry the evening before. 8 ✗Maria lays out Manuel’s clothes in the evening. This is not a good option. Maria is deciding for Manuel, while he still might be able to make his own decisions. 8 When Maria asks Manuel what he wants to wear in the evening she can give him only a few choices and, for example, ask him whether he wants to wear his blue or black trousers. In some cases this might be a good option. Even though Maria decides which trousers Manuel should wear the next day, Manuel can still make the final decision himself. However, in this case it might not be the best thing to do, because it might not solve the problem that Manuel will worry about the next day. MODULE 2 ANSWERS - BEING A CARER Lesson 3. Supported decision-making 2. Check your understanding Support for making decisions as the dementia progresses. AN SW ER S - B EI NG A C AR ER • Le ss on 3 iS u p p o rt In te rv e n ti o n M an u al 55 8 ✗Mary says what she wants, so she does not need support in making the decision whether or not to start the medication. This is not correct. Since Mary has dementia, we are not sure whether or not she understands why she needs the medication and what the consequences of taking or not taking the medication might be. 8 ✗✗The doctor says that she should take the medication because it is good for her health. Incorrect. Although it is true that the medication will be good for her health, the doctor is telling Mary what to do, which is not so good. What should the doctor and Chrissy do? Multiple answers are correct. 9 The doctor explains that taking the medication is good for her health because it will slow down damage to her brain resulting from her dementia. This is right! Her doctor’s explanation allows Mary to understand the importance of taking the medication and will enable her to make an informed decision. 9 Her daughter says: “Mom, you know that you are forgetting things and that you have difficulties to find the right words when you want to say something. By taking the medication these problems may slow down a bit.” Correct! Using different words to explain the possible reasons for taking the medication might help Mary understand why taking the medication would be beneficial for her. MODULE 2 ANSWERS - BEING A CARER Lesson 3. Supported decision-making 3. Check your understanding Support for making complex decisions (1). AN SW ER S - B EI NG A C AR ER • Le ss on 3 iS u p p o rt In te rv e n ti o n M an u al 56 9 ✗Jack is unable to understand the information relevant for the decision. 8 ✗Jack does not agree with the doctor. 9 ✗Jack is unable to communicate his decision (by talking, using body language or any other means). 9 ✗Jack is unable to use or weigh the information as part of the decision-making process. What do you think are the reasons that Jack can no longer make the decision himself? Multiple answers are correct. MODULE 2 ANSWERS - BEING A CARER Lesson 3. Supported decision-making 4. Check your understanding Support for making complex decisions (2). AN SW ER S - B EI NG A C AR ER • Le ss on 3 iS u p p o rt In te rv e n ti o n M an u al 57 1. The importance of involving family and friends It might be difficult to involve others caring for the person living with dementia. You could think that others will not be able to provide care as well as you can, that they do not have time or might say ‘no’ when asked for help. As time progresses, the person you care for will need more and more help with daily activities. Therefore, it is important to involve others so that the tasks can be shared. It can also be helpful to have someone to talk to who understands your situation and feelings. Do not wait too long, since help early on will allow you to continue providing care to your family member or acquaintance in the long term. Why is this lesson important? Sharing caregiving responsibilities with other people will help you to continue providing care in the long term. How will this lesson help me? By practicing the skill ‘asking for help’. What will I learn? 1. The importance of involving family and friends. 2. Types of help and support that you might need. 3. Effectively asking for help from others. MODULE 2 Le ss on 4 . I nv ol vin g ot he rs Lesson 4. Involving others iS u p p o rt In te rv e n ti o n M an u al 58 2. Types of help and support that you might need First let’s look at an example to find out whether Li, David and Fatima are receiving help, and if so, what kind of help. z Li takes care of her mother who has dementia. She receives no help from others. She spends a lot of time taking care of her mother and feels overwhelmed. She would like to get some help from others. z David takes care of his wife who has dementia. David has involved his two sisters in the care. The sisters regularly take his wife out for shopping or help clean the house. z Fatima takes care of her husband who has dementia. Fatima receives help from her family, friends and neighbours. Some helpers assist with shopping or cleaning the home, others take her husband for a walk or just listen to the difficulties she has with his memory loss. z Friends: Mohammed is always there to listen when I need it. The types of help and support that Fatima receives are presented below. Practical help z Family: once a month my sister helps with cleaning the house. z Friends: once a week my friend Hiba comes over to help with shopping and cooking. z Family: several family members take my husband out for a walk on a regular basis. Help with pleasant activities Emotional support MODULE 2 Le ss on 4 . I nv ol vin g ot he rs z Acquaintances/neighbours: my neighbours help to find information on dementia. Providing information iS u p p o rt In te rv e n ti o n M an u al 59 What kind of help do you receive? Please write down the types of help that you receive in the spaces below. If the help you receive is not listed below, use the ‘Other help’ box at the end to fill in your answer. Do your family, friends, neighbours or others provide: Practical help? Emotional help? Help with pleasant activities? 1. Activity MODULE 2 Le ss on 4 . I nv ol vin g ot he rs iS u p p o rt In te rv e n ti o n M an u al 60 Information? Other help? 1. Activity Keep in mind that sharing care tasks is common. It may allow you to do something pleasant for yourself, run an errand without having to bring the person you care for, or just enjoy a well-deserved break. Tip MODULE 2 Le ss on 4 . I nv ol vin g ot he rs iS u p p o rt In te rv e n ti o n M an u al 61 Your own support network Take a look at your own network as stated in the previous pages, what do you see? Please select the response that applies to the help that you receive. „ I receive help in one category. It is very good that you are already involving others. You might want to receive help in other ways too. Think about people who might be able to help you. „ I receive help in more than one category. It is very good that you are already involving others in caring for your family member or acquaintance. If needed, you can ask for help from other people as well. Perhaps the examples helped you identify people you had not considered before. „ I do not receive help. Keep in mind that providing care can be difficult. Think about ways to involve others in sharing the tasks. Remember that you do not know whether people will want to help unless you ask. It can be difficult to find help if you don’t have family nearby or live in a rural or isolated area, or if your family refuses to help. Think about alternatives such as your faith community, contacting your doctor for advice, or your national / local dementia association. 2. Activity MODULE 2 Le ss on 4 . I nv ol vin g ot he rs iS u p p o rt In te rv e n ti o n M an u al 62 What would you like to get more help with? Before you ask someone for help, it is important to know what it is you would like to ask. It can help to make a wish list of your needs. Let’s first have a look at Li, David and Fatima. You can see their wish lists below. Li I would like one evening for myself to do a hobby or activity. I would like help with cleaning the house. David I would li ke to hav e someone I can talk to about my feelings. Fatima I would like to get into contact with other carers to share my experiences and receive tips. MODULE 2 Le ss on 4 . I nv ol vin g ot he rs iS u p p o rt In te rv e n ti o n M an u al 63 Make a list of wishes that seem achievable Wish 1 Wish 2 Wish 3 What is on your wish list? Make your own wish list for the help or support that you would like to receive. Wishes could be for example: z I would like help with bathing the person I care for. z I would like advice on how to deal with the person I care for. z I would like adjustments to be made in my home to accommodate the care needs of the person I care for. List those wishes that you think are achievable. If you know beforehand that you might not be able to achieve a certain wish, it might be better to list a different wish that is more attainable. For instance, Li would prefer to hire someone to clean the house every week. However, Li cannot afford this and realizes that her wish is not realistic. She could hire someone to clean the house once every two weeks or ask someone who she does not need to pay, such as a friend or relative. She can ask the person to clean the whole house, or to help with specific tasks that are difficult for her, such as cleaning the floors. 3. Activity MODULE 2 Le ss on 4 . I nv ol vin g ot he rs iS u p p o rt In te rv e n ti o n M an u al 64 Now it is time to think about who could help. Some people have no problem asking for help, other people are not used to it but do not mind giving it a try. There are also people who find it very difficult to ask for help. The next section will teach you skills to ask for help effectively. Keep in mind your support wish list. 3. Effectively asking for help from others If you would like to ask others for help it is important to do so in an effective way. This means that you should be able to talk to others about your thoughts, feelings and experiences. It also means that you stand up for yourself. Things that will help you to effectively ask for help: z Think about what you want or need and what your feelings are about the current situation. z Describe your problem in one or two sentences. z Describe your thoughts and feelings clearly, so that the other person can understand your point of view. Who can I turn to? z Be honest and direct. z Keep the feelings of the other person in mind. z Give detailed information about what kind of help you need. z Be flexible: maybe you won’t get exactly what you asked for, but you will get something that will be helpful. z Break it down into smaller parts – it’s usually easier for people to say yes to a little request than to a big one. z If you reach a point where you do not know what to do anymore: take a break – go back to the discussion at a future time. For example: agree to think about it and talk again tomorrow afternoon. z If appropriate, offer to do the task together first. z Don’t give up. It may take many attempts before things change. z Asking for help will not always lead to the result you want, but it is important that you feel able to ask for it. MODULE 2 Le ss on 4 . I nv ol vin g ot he rs iS u p p o rt In te rv e n ti o n M an u al 65 „ Li tells her sister that she wants to take care of their mother, but that she just needs a short break from caregiving during the week. She says: “I would like to discuss how you could help in a way that is possible for you.” Which of the following examples represents an effective way to ask for help? Please check the one response that you think is correct. She knows who to turn to for help and decides to ask her sister. Li would like to have an evening to herself once a week. She tries to ask for help in three different ways. Let’s have a look at Li again „ Li decides to attend a weekly one-hour class in the evening to have a break from providing care. However, she does not discuss with her sister the importance of having a break during the week. When she asks her sister to take care of their mother for an hour, her sister said: “Sorry, I have no time.” Li cancels her class. „ Li approaches her sister by saying, “I’m sick and tired of you not doing anything! You never have time to help me care for our mother!” 1. Check your understanding Asking for help effectively. MODULE 2 Le ss on 4 . I nv ol vin g ot he rs iS u p p o rt In te rv e n ti o n M an u al 66 Your own plan to involve others Make your own plan to involve others in caring for your family member or acquaintance with dementia. Now think of your wishes and who you can turn to for help. Imagine yourself in a situation in which you will ask for help. Please answer the following questions in the boxes below. Who would you like to ask for help? What would you like to say? What would you do if the person does NOT want to help? What would you do if the person does want to help? 4. Activity MODULE 2 Le ss on 4 . I nv ol vin g ot he rs iS u p p o rt In te rv e n ti o n M an u al 67 You finished this lesson, well done! MODULE 2 Le ss on 4 . I nv ol vin g ot he rs iS u p p o rt In te rv e n ti o n M an u al 68 MODULE 2 AN SW ER S - B EI NG A C AR ER • Le ss on 4 8 Example 2 Passive. This is not an effective way of asking for help. Her sister may not be aware that Li is feeling overwhelmed. Li is not being honest about her feelings and is trying to avoid a conflict with her sister. She does not stand up for herself. It is a passive way of asking for help. 8 Example 3 Aggressive. This is not an effective way of asking for help. Li becomes angry. However, her sister may not be aware that Li is feeling overwhelmed, because she did not clearly mention this. She does not approach her sister in a respectful way. It is an aggressive way of asking for help. Which of the examples is an effective way to ask for help?✗ 9 Example 1 Effective. This is an effective way of asking for help. Li stands up for herself, says what she is thinking and is honest about her need for a regular break. She also keeps the interests of her sister in mind. 1. Check your understanding Asking for help effectively. ANSWERS - BEING A CARER Lesson 4. Involving others M od ul e 3 . C ar in g fo r m e CARING FOR ME Lesson 1. Reducing stress in everyday life Lesson 2. Making time for pleasant activities Lesson 3. Thinking differently 3 MODULE iS u p p o rt In te rv e n ti o n M an u al 70 Why is this lesson important? It is important to take care of yourself while caring for another person. This lesson will help you to keep providing care. How will this lesson help me? This lesson helps to reduce stress and renew your energy with exercises that do not take much time. What will I learn? 1. The importance of relaxing. 2. Different ways to relax: z basic breathing; z mindful breathing; z neck movements; z number counting; z imagery; z total stretching; z muscle relaxation. 3. Relaxing at any time and any place. MODULE 3 Le ss on 1 . R ed uc in g st re ss in ev er yd ay lif e Lesson 1. Reducing stress in everyday life iS u p p o rt In te rv e n ti o n M an u al 71 1. The importance of relaxing Let’s look at an example Diana: no time, no energy Diana takes care of her husband Dan who has dementia. She feels increasingly tense. A friend advises her to try to relax and not ask too much of herself. Diana tells her friend that she does not have the time or energy to relax. Her friend explains that there are ways to relax that do not take much time, and that relaxing might give Diana renewed energy that could help her get tasks done more easily. Diana succeeds in relaxing Diana decides to follow her friend’s advice and tries the breathing exercise her friend showed her. When Diana sees her friend again she says: “Thank you for the good advice. Although I still have a lot to do, I feel less tense.” Diana decides to do the breathing exercise every time she is feeling tense. Relaxation: z makes you feel less tense; z might give you renewed energy; z may make it easier to get tasks done; and z does not have to take much time. MODULE 3 Le ss on 1 . R ed uc in g st re ss in ev er yd ay lif e Reminder iS u p p o rt In te rv e n ti o n M an u al 72 2. Different ways to relax There are different ways you can relax. Try and see which one(s) suit you best. Before you try an exercise ask yourself: “How tense am I feeling”? After the exercise, ask yourself again. This might help you understand whether this type of relaxation helps you feel less tense. In this lesson you will find seven relaxation exercises. The first three exercises will take only a few minutes (i.e. 5 minutes max.). The other exercises will take a little longer (i.e. 10-15 minutes max.). Use the scale below of 1-10 and tick what number describes how tense you are feeling now, 1 is very small amount of tension and 10 is very high amount of tension. VERY SMALL VERY HIGH 1 42 53 6 7 8 9 10 MODULE 3 Le ss on 1 . R ed uc in g st re ss in ev er yd ay lif e Focusing on your breathing is relaxing. By doing a breathing exercise you could reduce tension. This exercise will take: less than 5 minutes. Caution: if you experience difficulty breathing, this exercise might not be the best option for you. This is how you do it: z When sitting down, sit up straight in your chair with your back against the back of your chair. z When standing, stand up straight. z Put both of your feet flat on the surface. z Focus on your breathing. z Keep breathing like you are used to. z Try to feel how you breathe. Put your hand on your stomach to feel how you inhale and exhale. z Exhale from your mouth and pull in your stomach as much as possible. z Follow your breathing in this manner a couple of breaths and then stop the exercise. 1. Relaxation activity - Basic breathing iS u p p o rt In te rv e n ti o n M an u al 73 This exercise will help you feel calm and reduces stress. You will breathe with your stomach according to a rhythm. This exercise will take: 5 minutes. This is how you do it: z Sit straight in a chair and make sure your face and shoulders are relaxed. z Bring your hands to your stomach and breathe into it. z Breathe in for 4 counts and out for 8 counts, at a comfortable pace. z Your stomach should expand with each inhale and contract with each exhale. z Return to your normal breathing and spend one minute just observing yourself breathing and noticing how you feel. z Practice listening to your own thoughts without negative judgement. z If your mind wanders, refocus on breathing and meditation. With this exercise you will feel less tension in your neck. It will also increase the blood flow to your brain. This exercise will take: 5 minutes. This is how you do it: z Make sure to move slowly and with attention. z Bend your neck forward and backward. z Inhale while you lift your head up and back. Exhale while you drop your chin to your chest. z Rotate your chin from side to side. z Inhale when your chin is in the centre. Exhale when you look to the side. z Drop your ear towards your shoulder. z Inhale when you are in the centre. Exhale when you drop your ear to your shoulder. z Repeat 5 times. Relaxation exercise - Neck movements MODULE 3 2. Relaxation activity - Mindful breathing 3. Relaxation activity - Neck movements Le ss on 1 . R ed uc in g st re ss in ev er yd ay lif e iS u p p o rt In te rv e n ti o n M an u al 74 This exercise will take: 5 minutes. This is how you do it: z Sit or lie down comfortably in a quiet place. z Breath slowly. z With each breath, take at least 3 seconds to breathe in and 6 seconds to breath out. z Focus on your breathing and your lower stomach when you breathe until you feel calm and peaceful inside your heart and mind. z Say the word ‘relax’ whenever you breathe out. z Tell yourself that you will start counting down from 20 to 1. You can relax by focusing on your breathing and counting back from 20 to 1. z Tell yourself that you will double your level of relaxation for each and every count, and will be totally relaxed when you reach 1. z Start counting down from 20 to 1 slowly. Say the word ‘relax’ whenever you count (that is, take a deep breath, say ‘20’, breathe out slowly and say ‘relax’, take a deep breath, count ‘19’, breathe out slowly and say ‘relax’, and so on). z Now repeat this exercise but with your eyes closed. Relaxation exercise - Number counting MODULE 3 4. Relaxation activity - Number counting Le ss on 1 . R ed uc in g st re ss in ev er yd ay lif e iS u p p o rt In te rv e n ti o n M an u al 75 You can relax by imagining you are in a place or surrounded by people and things you like. This exercise will take: 5 minutes. Before completing this exercise, take a look at the helpful guidelines below. z Only imagine places, people and things you like. z Imagine what you can hear, feel, smell, and/or taste if you were in that place. z Try to think of very specific details of the place, thing or person. For example, how does the surface of the thing feel and how does it smell? Now try to relax while imagining that you are in a place or with the people or things that you like. This is how you do it: z Sit or lie down comfortably in a quiet place. z Breathe slowly. z With every breath, take at least three seconds to breathe in and at least six seconds to breathe out. z Focus on your breathing and your lower stomach when you breathe until you feel peaceful inside. z Imagine you are in a place or surrounded by things or people you like. z Now do this exercise again but close your eyes. MODULE 3 5. Relaxation activity - Imagery Le ss on 1 . R ed uc in g st re ss in ev er yd ay lif e iS u p p o rt In te rv e n ti o n M an u al 76 This exercise is particularly helpful when your muscles feel tense. This exercise will help you relax by tensing and relaxing your muscles. This exercise will take: 10-15 minutes Caution: if you have any injuries or any other physical limitations, this may not be the best exercise for you. Try one of the other exercises. Below are some general instructions for you to keep in mind. z When you are ready to begin, tighten the muscle group described. Make sure that you can feel the tension, but no pain. Keep the muscle tensed for approximately 5 seconds. z Relax the muscles and keep it relaxed for approximately 10 seconds. It may be helpful to say ‘relax’ as you relax the muscle. z When you have finished the muscle relaxation, remain seated for a few moments allowing yourself to become alert. This is how you do it: z Right hand and forearm: make a fist with your right hand. Hold for 5 seconds and then relax for 10 seconds. Don’t forget to breathe. It might be helpful to inhale while tensing your muscles and exhale while relaxing your muscles. Do the same for your left hand and forearm. z Right upper arm: bring your right forearm up to your shoulder to ‘make a muscle’. Hold for 5 seconds and then relax for 10 seconds. Do the same for your left upper arm. z Forehead: raise your eyebrows as high as they will go, as though you were surprised by something. Hold for 5 seconds and then relax for 10 seconds. z Eyes and cheeks: squeeze your eyes closed. Hold for 5 seconds and then relax for 10 seconds. z Mouth and jaw: open your mouth as wide as you can, as if you are yawning. Hold for 5 seconds and then relax for 10 seconds. MODULE 3 6. Relaxation activity - Muscle relaxation Le ss on 1 . R ed uc in g st re ss in ev er yd ay lif e Please continue the exercise on the following page. iS u p p o rt In te rv e n ti o n M an u al 77 z Neck: be careful as you tense these muscles. Face forward and then pull your head back slowly, as though you are looking up to the ceiling. Hold for 5 seconds and then relax for 10 seconds. z Shoulders: tense the muscles in your shoulders as you bring them up towards your ears. Hold for 5 seconds and then relax for 10 seconds. z Shoulder blades/Back: push your shoulder blades back, trying to almost touch them together, so that your chest is pushed forward. Hold for 5 seconds and then relax for 10 seconds. z Chest and stomach: breathe in deeply, filling up your lungs and chest with air. Hold for 5 seconds and then relax for 10 seconds. z Hips and buttocks: squeeze the muscles in your buttocks. Hold for 5 seconds and then relax for 10 seconds. z Right upper leg: tighten your right thigh. Hold for 5 seconds and then relax for 10 seconds. Repeat for your left upper leg. z Right lower leg: do this slowly and carefully to avoid cramps. Pull your toes towards you to stretch the calf muscle. Hold for 5 seconds and then relax for 10 seconds. Repeat for your left lower leg. z Right foot: curl your toes downwards. Hold for 5 seconds and then relax for 10 seconds. Repeat for your left foot. MODULE 3 6. Relaxation activity - Muscle relaxation (continued) Le ss on 1 . R ed uc in g st re ss in ev er yd ay lif e iS u p p o rt In te rv e n ti o n M an u al 78 Stretching your muscles can help to decrease tension. Stretching exercises are very convenient since you can do them anywhere and anytime. This exercise will take: 10 minutes. This is how you do it: z Stand up, or do this exercise in your chair. z Take a deep breath, all the way down to the bottom of your stomach, and slowly let it out. z As you exhale, feel the tension drain from your body. z Take one more breath and hold it for a moment… and let it out slowly. z With each breath you are becoming more and more relaxed. z Now, gently reach your arms out to the sides as though you were trying to touch the walls. z Relax your shoulders and stretch yourself a little. z Gently reach your arms out in front of you. z Feel the muscles in your back and shoulders loosen up. z Stretch out in front a little further. z And now reach up as high as you can. z Push up your arms towards the sky, as if you were trying to reach the sun. z Again, reach your arms out to the sides as though you were trying to touch the walls, as though you were trying to push them outwards. z Reach out in front of you. z Feel your muscles in your back and shoulders become looser and less tense. z Reach towards the sky one more time. z Reach as high as you can. z Try to touch the sun. z Lower your arms to your sides. MODULE 3 7. Relaxation activity - Total stretching Le ss on 1 . R ed uc in g st re ss in ev er yd ay lif e Please continue the exercise on the following page. iS u p p o rt In te rv e n ti o n M an u al 79 z Now, roll your shoulders back. z Feel the tension drain form your body. z Roll your shoulders back again. One more time roll your shoulders. z Now roll them forward. Forward again. One more time forward. z Now shrug your shoulders, lifting them up and then pushing them down. Shrug your shoulders again. Shrug them one more time. z Now another deep and refreshing breath and exhale all of the tension in your body. z Take one more breath…and exhale letting go of any remaining tension. MODULE 3 7. Relaxation activity - Muscle relaxation (continued) Le ss on 1 . R ed uc in g st re ss in ev er yd ay lif e iS u p p o rt In te rv e n ti o n M an u al 80 You can take some time to relax at any time of the day and in any place. Let’s look at an example Diana: relaxing while waiting in line Diana often feels tense when there is a long line in the store, as she is aware she still has many other things to do. She decides to do the breathing exercise while waiting in line. Afterwards, she feels less tense. You can also plan a specific time to relax, for example every day after lunch. You can choose what suits you best. If necessary, you can use a reminder to make sure that you do not forget to take some time to relax. 3. Relaxing at any time and any place z You can take some time to relax anywhere and at any time of the day. z Set a goal: try to do a relaxation exercise at least once a day. z You can plan a specific time to relax every day (if necessary, use a reminder). z You will benefit from having renewed energy and a better mood after doing the relaxation exercises. z Even a brief exercise can make a difference! z You will also be able to reduce feelings of tension and continue caring for your family member or acquaintance over the long term. MODULE 3 Keep in Mind Le ss on 1 . R ed uc in g st re ss in ev er yd ay lif e iS u p p o rt In te rv e n ti o n M an u al 81 Was this helpful for you? If not, there might be different reasons why relaxation was not helpful to you: z Perhaps you could not focus on relaxing. z Try again at another time! z Maybe you like an exercise, but you need some more practice to really benefit from it. Try to do this exercise regularly. z The exercise you chose may not have suited you. Try a different exercise! z The exercise you chose was too short. z Try this exercise again or do another one! If the exercises are still not helping you after these tips, try to do an activity you enjoy. Have a look at Lesson 2. Making time for pleasant activities in this module to find out which activities you may enjoy. MODULE 3 Le ss on 1 . R ed uc in g st re ss in ev er yd ay lif e You finished this lesson, well done! iS u p p o rt In te rv e n ti o n M an u al 82 1. The importance of pleasant activities Pleasant activities are important because caregiving can last a long time and doing pleasant activities can help you to relax and continue providing care. Pleasant activities can be small things such as going for a walk or talking to a friend. This may not always be easy, because providing care can be time- consuming and someone might have to take over the care for your family member or acquaintance while you are not there. Let’s see how Amy, Jose, and Umit experience caregiving and the importance of planning pleasant activities. Amy Amy takes care of her mother who is living with dementia. She dedicates most of her time to caregiving and rarely takes time for herself. She does not engage in any pleasant activities. Amy notices that recently she is more tired than usual and feels that she is not able to care for her mother as she did before. Why is this lesson important? It is important to take care of yourself while caring for another person. This lesson will help you to keep providing care. How will this lesson help me? This lesson will help you to take time for yourself and do pleasant activities to relax. What will I learn? 1. The importance of pleasant activities. 2. Barriers to doing pleasant activities. 3. Making pleasant activities achievable. 4. Doing pleasant activities together. MODULE 3 Le ss on 2 . M ak in g tim e f or p lea sa nt ac tiv iti es Lesson 2. Making time for pleasant activities iS u p p o rt In te rv e n ti o n M an u al 83 Jose Jose takes care of his brother who is living with dementia. Jose does not get a lot of sleep and rarely has time for afternoon naps. He recently started asking his sister to come by and help with caregiving so he can take a nap and read a magazine each afternoon. Umit Umit takes care of his wife who is living with dementia. Recently, he has hired a professional carer who stops by three times a week to help him care for her. When the professional carer is there, Umit reads the newspaper or goes for a walk. z If you are not able to make time for yourself, you can get very tired which may make you less able to continue providing care. z You can ask family and friends to help care for the person living with dementia so that you can take some time for yourself. z If it is affordable, you could hire a professional carer to help you care for your family member or friend so you can take some time for yourself. MODULE 3 Keep in Mind Le ss on 2 . M ak in g tim e f or p lea sa nt ac tiv iti es iS u p p o rt In te rv e n ti o n M an u al 84 Which pleasant activities would you like to do? Once you have some time for yourself, it can be hard to think of the things you would like to do. There are many possibilities and even in a short amount of time, you can still do an activity that you like. In this exercise you will make a list of pleasant activities that you would like to do. Please check at least two activities that you would like to do more often. If your favourite activity is not listed below, use the ‘other’ box to write your own activity. „ Do a crossword puzzle „ Watch TV „ Visit friends or family „ Cook „ Listen to music „ Do crafts „ Read „ Take a nap „ Go shopping „ Take a walk „ Exercise „ Other: 1. Activity MODULE 3 Le ss on 2 . M ak in g tim e f or p lea sa nt ac tiv iti es iS u p p o rt In te rv e n ti o n M an u al 85 2. Barriers to doing pleasant activities Let’s go back to Amy’s example Amy dedicates most of her time to caring for her mother who has dementia. She does not receive any help and is tired all the time. She is struggling to care for her mother and has stopped doing the things she likes because she feels that she does not have enough time. Eventually, Amy is so tired that she decides to ask her friend for help. She is now able to make some time for herself and engage in pleasant activities. Amy feels more energized afterwards. She also feels that she is better able to handle the care for her mother as a result. Other reasons you may feel unable to do pleasant activities Not having time was the reason that Amy did not feel as though she could do any pleasant activities. However, there are several other reasons. MODULE 3 Le ss on 2 . M ak in g tim e f or p lea sa nt ac tiv iti es iS u p p o rt In te rv e n ti o n M an u al 86 Do you recognize any of the following? Please select any that may apply to you. „ No time. You might feel that you are too busy and not able to find any spare time. It is really important that you try to make some time during the day or in the evening to do something you enjoy. If you have little time, there are some pleasant activities that do not take up a lot of time and which you can fit in around your day. „ No energy. You might have less energy because caregiving can be tiring. Although it is hard to imagine, it is likely that you will feel more energized after doing something you like. „ No money. You might think that you have to spend lots of money to do something pleasant. Pleasant activities do not have to be costly. You can keep the activities as simple as you want them to be. For example, things like meeting a friend for a cup of tea or going for a walk by yourself do not cost money. „ Not in the mood. You might not feel like doing pleasant activities. Although it is hard to imagine, it is likely that your mood will be better after doing something you like. On the other hand, not doing pleasant activities will likely worsen your mood. „ Physical limitations. You might think that if you have physical limitations, you are not able to do a pleasant activity. If you have physical limitations, think of activities that you can do despite your limitations. There are many possibilities, such as reading, playing a game or talking to a friend. „ Guilt. You might feel guilty because you will feel that you are running away from the person you care for. You need time to do things you like, relax and recharge so that you can provide adequate care for them. Being a good carer means taking care of yourself as well. 2. ActivityMODULE3 Le ss on 2 . M ak in g tim e f or p lea sa nt ac tiv iti es iS u p p o rt In te rv e n ti o n M an u al 87 Suggestions for doing pleasant activities z Consider asking someone to help you with some of your day-to-day tasks. z Consider the impact of not doing certain tasks at that moment. For example, what is the impact of not cleaning the house every day? You may realize that you can be more flexible and have more time as a result. z Try to do one activity at a time and finish the things you have started as much as possible. If you leave something unfinished, it may make you feel dissatisfied. You may not be able to focus entirely on your next activity. You could feel more energized if you complete an activity before taking on another. z Think about ways to better manage your time. Consider using an agenda or calendar. z Talk to someone about how you might be able to better manage your time. Seeking another opinion or suggestions may be helpful. MODULE 3 Le ss on 2 . M ak in g tim e f or p lea sa nt ac tiv iti es Consider asking for help. iS u p p o rt In te rv e n ti o n M an u al 88 Now rate how achievable it would be for you to do the pleasant activities that you chose earlier in this lesson (see the exercise on page 84). 3. Making pleasant activities achievable Read every activity and consider whether the activity is: 1. unachievable; 2. unlikely to be achievable; 3. somewhat achievable; 4. achievable; 5. very achievable. Please check at least two activities that you would like to do more often. If your favourite activity is not listed below, use the ‘other’ box to write your own activity. „ Do a crossword puzzle „ Watch TV „ Visit friends or family „ Cook „ Listen to music „ Do crafts „ Read „ Take a nap „ Go shopping „ Take a walk „ Exercise „ Other: MODULE 3 3. Activity Le ss on 2 . M ak in g tim e f or p lea sa nt ac tiv iti es Unlikely to be achievable Somewhat achievable Achievable Very achievableUnachievable iS u p p o rt In te rv e n ti o n M an u al 89 4. Doing pleasant activities together It can be very rewarding to do pleasant activities with the person that you care for. However, it might be difficult at first to think of pleasant activities that are suitable for both of you. In this exercise we will make a list of the pleasant activities that you can do with the person you care for. First, take a look at Jose’s experience from the previous exercise. Jose Jose takes care of his brother who is living with dementia. In addition to taking a nap while his sister takes care of his brother, Jose takes his brother out for walks around the neighbourhood. His brother enjoys the walks and Jose is also able to get some exercise and fresh air. Which of your activities can you do today? It is a good idea to start with your pleasant activities as soon as possible and incorporate them into your routine. Which of your activities can you do today? If it is inconvenient to start an activity today, think about the pleasant activities you could do tomorrow. Start with small goals and add more pleasant activities after you feel successful with your first try. Rethink the activities that you would like to do to help make them more achievable. z Pleasant activities should be achievable. z There are different reasons why you can feel that pleasant activities are not achievable. z There are ways to undertake pleasant activities despite these reasons. Remember MODULE 3 Le ss on 2 . M ak in g tim e f or p lea sa nt ac tiv iti es iS u p p o rt In te rv e n ti o n M an u al 90 Please select at least one activity that you would like to do together more often. If an activity is not listed below, use the ‘other’ box at the bottom of the list to add the activity that you would like to do. Keep in mind that despite the challenges, pleasant activities are good for you and are necessary to ensure that you are able to keep providing care to your family member or acquaintance. What would you like to do more often? Take a look at the list below for examples that you can do with the person that you care for. „ Listen to music „ Play a musical instrument „ Take a relaxing walk „ Listen to or read stories, newspaper articles, poems, etc. „ Go out to eat together „ Cook and prepare snacks „ Watch birds or animals „ Do handiwork or crafts „ Look at photos „ Watch the clouds or explore nature „ Recall and discuss happy memories „ Have friends over to visit „ Other: Activity MODULE 3 Le ss on 2 . M ak in g tim e f or p lea sa nt ac tiv iti es iS u p p o rt In te rv e n ti o n M an u al 91 MODULE 3 Le ss on 2 . M ak in g tim e f or p lea sa nt ac tiv iti es You finished this lesson, well done! iS u p p o rt In te rv e n ti o n M an u al 92 Why is this lesson important? Your thoughts determine how you feel. Unhelpful thoughts can make us feel bad. How will this lesson help me? This lesson will help you think differently and change your unhelpful thoughts into helpful ones. What will I learn? 1. Thoughts determine how we feel. You cannot change what happens, but you can change your response. 2. Learn to think differently by changing unhelpful thoughts into helpful ones. 3. Thinking differently makes you feel better. 1. Thoughts determine how we feel There are different ways to deal with stressful events. One way is to think differently. Let’s look at an example. MODULE 3 Le ss on 3 . T hi nk in g di ffe re nt ly Lesson 3. Thinking differently It is not an event that makes you feel angry, sad, happy or guilty, it is how you think about it. An event can be anything. Here are a few examples: z The person you care for becomes angry when you ask him/her something. z Your family member who promised to help you does not turn up or cancels on you. z The person you care for cannot find something. z Your family member is blaming you for not providing the right care. Many people think that their feelings are a direct consequence of an event. However, it is the way that you think about the event that determines how you feel. iS u p p o rt In te rv e n ti o n M an u al 93 What do you think Jo should do? Please check all the responses that you feel are appropriate. „ Tell Max that she cannot help him search now and leave. „ Search for the keys until she finds them. „ Tell Max that he should be more careful not to lose his keys in the future. „ Think to herself, “Max has dementia and is sometimes worried when he loses things. I can take some time to help and then go.” Then call her friend and explain that she will come later. MODULE 3 1. Check your understanding Feelings and thoughts. z There are many different ways of dealing with events. z Negative thoughts can make us feel bad. z By thinking differently, you might feel better and be able to better deal with events. Keep in mind Le ss on 3 . T hi nk in g di ffe re nt ly Lost keys Jo is married to Max who is living with dementia. She is about to leave the house to visit a friend. Max says, “I can’t find my keys! You cannot leave me without keys!” Jo thinks to herself: “I cannot leave him alone anymore.” She starts to feel miserable. iS u p p o rt In te rv e n ti o n M an u al 94 Jo thinks to herself when Max cannot find his keys: “I cannot leave Max alone anymore.” This makes her feel miserable. This means that Jo is thinking in an unhelpful way. Unhelpful thoughts can make it harder to respond in useful ways to situations like this. Instead, Jo could think: “Max has dementia and is sometimes worried when he loses things. I can take some time to help and then go.” This different way of thinking will probably make Jo feel better and help her stay calm and compassionate. Helpful thoughts can make it easier to respond in useful ways to situations like these. Jo’s unhelpful and helpful thoughts z It is not the event itself that makes you feel angry, sad, happy or miserable. z Helpful or unhelpful thoughts can determine how you respond to a situation. z By changing your thoughts, you could help change the way you feel. MODULE 3 Keep in mind Le ss on 3 . T hi nk in g di ffe re nt ly iS u p p o rt In te rv e n ti o n M an u al 95 Can you indicate which of Aryan’s thoughts may help make her feel better? Aryan might think… „ Making time for myself helps me to provide better care. „ I am a bad carer if my family member is not always happy. „ Maybe the person living with dementia will become better. „ No one understands how hard it is to care. „ No one can provide the care the way I do. „ Asking others for help can help me to share the duties of care. „ Dementia is a disease, it is not my or anyone else’s fault. Unhelpful thoughts make you feel bad Aryan has been caring for her family member who is living with dementia for several years now. She has many thoughts. Some make her feel worse, some make her feel better. z Unhelpful thoughts can make you feel bad. z Helpful thoughts are important to feel better and will assist you in dealing with situations in a more useful way. z To feel better, it is important to identify unhelpful thoughts. MODULE 3 Keep in mind2. Check your understanding Thoughts that can make you feel better. Le ss on 3 . T hi nk in g di ffe re nt ly iS u p p o rt In te rv e n ti o n M an u al 96 How do you think Xavier is feeling? Please check all the responses that you feel are appropriate. „ Angry „ Guilty „ Happy „ Lonely „ Sad „ Supported „ Upset 2. Learn to think differently by changing unhelpful thoughts into helpful ones What if Xavier instead thinks to himself, “if Gabriel thinks I need help, he must care about me and my father and wants to make sure we are doing well”? MODULE 3 3. Check your understanding How thoughts influence our feelings. Le ss on 3 . T hi nk in g di ffe re nt ly Xavier meets his friend Gabriel Xavier takes care of his father, who is living with dementia. While he is shopping, he meets his friend Gabriel, who asks, “How are you? Do you need any help caring for your father?” Xavier thinks to himself, “if Gabriel thinks I need help, he must think that I am a bad carer”. How does Xavier feel now? Please check all the responses that you feel are appropriate. „ Angry „ Guilty „ Happy „ Lonely „ Sad „ Supported „ Upset 4. Check your understanding Match feelings to a helpful thought. Sometimes you cannot change the things that happen (events), but you can change your response (thoughts). Keep in mind iS u p p o rt In te rv e n ti o n M an u al 97 „ I have to do everything alone. „ The person I care for does not care about me anymore. „ When the person I care for is not happy, it means that I am a bad carer. „ Maybe the person I care for will get better. „ I must always be available for the person I care for. „ I should not consider my own needs if I want to be a good carer. „ No one understands how hard it is to care. „ No one can provide care the way I do. „ He/she being diagnosed with dementia has complicated my life. „ I have no time for others as a carer. „ I feel sorry for the person I care for. „ Other people are better off than the person I care for and I. „ Other: MODULE 3 Le ss on 3 . T hi nk in g di ffe re nt ly Which unhelpful thoughts do you have? Please check the unhelpful thoughts that you have or provide additional examples. In an earlier example you indicated which thoughts are helpful and which may be unhelpful. Below you will find a list of unhelpful thoughts. 1. Activity iS u p p o rt In te rv e n ti o n M an u al 98 Changing your unhelpful thoughts to helpful ones can make you feel better.In an earlier example you indicated which thoughts are helpful and which may be unhelpful. Below you will find a list of helpful thoughts. Please check the helpful thoughts that you have or provide additional examples. „ It is okay to take time to relax as it will help me to provide a good standard of care. „ Sharing my feelings with others helps to take the pressure off. „ Asking for help from others can help me to share the burden of care. „ Making time for myself helps me to provide better care. „ Dementia is a disease; it is not my or anyone else’s fault. „ I do not have to give others their way all the time. „ Other: Which helpful thoughts do you have? MODULE 3 Keep in mind Le ss on 3 . T hi nk in g di ffe re nt ly 2. Activity iS u p p o rt In te rv e n ti o n M an u al 99 3. Thinking differently makes you feel better You cannot change the things that happen, but you can change your response. In other words, you cannot change events but you can change your thoughts. Example 1: Wei Wei takes care of his wife Xu, who is living with dementia. He writes the following: Name: Wei Yesterday my wife Xu and I visited some friends. We had tea together. Xu dropped her cup on the floor. When they started to clean the floor, Xu did not help, but she stood in the way. She did not apologise for her behaviour, but laughed. Our friends are upset with my wife and won’t invite us to their house again. My wife has dementia and is unable to think and act in the same way that she used to. Our friends won’t blame my wife as I have explained to them that she has dementia and that her thinking has declined. Instead of feeling worried and ashamed, I would have felt happy about the day we spent with our friends. What was the event that made you feel upset or miserable? What were your unhelpful thoughts? What would be more helpful to think? How could the helpful thoughts make you feel? MODULE 3 Le ss on 3 . T hi nk in g di ffe re nt ly iS u p p o rt In te rv e n ti o n M an u al 100 Example 2: Helen Helen takes care of her brother Matty, who is living with dementia. She writes the following: MODULE 3 Name: Helen A week ago, our sister came to visit us. At the end of the day, I said to Matty, “it was a great day, don’t you think?” Then he said that he was not sure, because he could not remember exactly what we had been doing. He said that he was tired and wanted to sleep. Nothing we do is worthwhile because Matty forgets everything. Everything is ruined because of his dementia. Even though he cannot remember what we did, I know that he had a great day too, and that is what counts. He smiled a lot today and kept saying how nice it was that our sister came. Instead of feeling sad and miserable, I would have felt happy about the day we spent with our sister. What was the event that made you feel upset or miserable? What were your unhelpful thoughts? What would be more helpful to think? How could the helpful thoughts make you feel? Le ss on 3 . T hi nk in g di ffe re nt ly iS u p p o rt In te rv e n ti o n M an u al 101 Now it’s your turn. In the next exercise you will work to change your unhelpful thoughts into helpful ones. Try to think of a recent event that made you feel upset and answer the questions below. You can refer back to the examples on the previous page for some help. MODULE 3 Le ss on 3 . T hi nk in g di ffe re nt ly Name: What was the event that made you feel upset or miserable? What were your unhelpful thoughts? What would be more helpful to think? How could the helpful thoughts make you feel? iS u p p o rt In te rv e n ti o n M an u al 102 Name: What was the event that made you feel upset or miserable? What were your unhelpful thoughts? What would be more helpful to think? How could the helpful thoughts make you feel? Practice makes perfect. Do you want to try one more time? Please answer the questions below for a different event. MODULE 3 Le ss on 3 . T hi nk in g di ffe re nt ly iS u p p o rt In te rv e n ti o n M an u al 103 You finished this lesson, well done! MODULE 3 There are events in which feeling upset, miserable, sad or angry is inevitable. Examples include: if the person you care for needs to go to the hospital or if you lose a dear friend or family member. To change your thoughts in such events would not do justice to your feelings. Keep in mind Le ss on 3 . T hi nk in g di ffe re nt ly z You cannot change what happens, but you can change your response. z You can learn to think differently by changing your unhelpful thoughts into helpful ones. z Thinking differently makes you feel better. Let’s review what you have learned in this lesson iS u p p o rt In te rv e n ti o n M an u al 104 8 Tell Max she cannot help him search now and leave. This is bad advice. Max has dementia and is feeling worried. He could be very upset if Jo leaves the house right now. 8 Search for the keys until she finds them. This could be helpful. Max might feel safer if he has the keys. However, this may mean Jo misses meeting her friend and is left feeling miserable. 8 Tell Max that he should be more careful not to lose his keys in the future. This is not such good advice. Max has dementia, he cannot help misplacing things. What do you think Jo should do? 9 ✓Think to herself, “Max has dementia and is sometimes worried when he loses things. I can take some time to help and then go.” Then call her friend and explain that she will come later. This is good advice. It is not the fact that Max has lost the keys that is making Jo miserable, but her concern that she always needs to help Max and cannot leave him alone anymore. After Jo has called her friend, she can help Max search for the keys, which will make him feel safer. Then she can go to see her friend. 1. Check your understanding Feelings and thoughts. ANSWERS - CARING FOR ME Lesson 3. Thinking differently AN SW ER S - C AR IN G FO R M E • L es so n 3 iS u p p o rt In te rv e n ti o n M an u al 105 9 Making time for myself helps me to provide better care. This is a helpful thought. No one should feel guilty when taking time for themselves. It might help the carer to continue providing care in the long term. 8 I am a bad carer if my family member is not always happy. This thought will make Aryan feel unhappy and sad. The mood of the person living with dementia does not depend solely on the carer. For example, mood can also be related to dementia, depression, functional ability or personality. 8 Maybe the person living with dementia will get better. This thought may make Aryan feel disappointed as people with dementia continue to decline. There are many diseases that cause dementia. Unfortunately, there is no cure for any of these diseases yet. 9 Dementia is a disease, it is not my or anyone else’s fault. This thought is helpful and might prevent feelings of guilt. ✓ Which of Aryan’s thoughts may help make her feel better? 8 No one understands how hard it is to care. This thought may make Aryan feel upset, isolated and lonely. There might be people who do not understand how hard it is to care. However, talking to other people may help them better understand what dementia is and help you to take some pressure off. 8 No one can provide the care the way I do. This thought could make Aryan feel lonely, isolated and under a lot of pressure. Although others may provide care in a different way, that does not mean that it is always of a lower standard. It is important to involve others in caring for a person living with dementia, to avoid getting overwhelmed. 9 ✓Asking others for help can help me to share care duties. This is a helpful thought that may make Aryan feel more in control. Involving other people in caregiving has lots of potential benefits. For instance, the carer will be able to take breaks more regularly and provide care for a longer time. AN SW ER S - C AR IN G FO R M E • L es so n 3 2. Check your understanding Thoughts that can make you feel better. iS u p p o rt In te rv e n ti o n M an u al 106 Xavier thought, “if Gabriel thinks that I need help, he must think I am a bad carer.” How do you think Xavier is feeling? This is an unhelpful thought that may make Xavier feel: 9 upset 9 lonely 9 sad 9 angry 9 guilty Xavier thought, “if Gabriel thinks I need help, he must care about my father and want to make sure that we are doing well”. How does Xavier feel now? This is a helpful thought that may make Xavier feel happy or supported. AN SW ER S - C AR IN G FO R M E • L es so n 3 3. Check your understanding How thoughts influence our feelings. 4. Check your understanding Matching feelings to a helpful thought. M od ul e 4 . P ro vid in g ev er yd ay ca re PROVIDING EVERYDAY CARE Lesson 1. Eating and drinking - more pleasant mealtimes Lesson 2. Eating and drinking - preventing health problems Lesson 3. Toileting and continence care Lesson 4. Personal care Lesson 5. An enjoyable day 4 MODULE iS u p p o rt In te rv e n ti o n M an u al 108 1. Making mealtimes more pleasant Engaging people with dementia in simple tasks around mealtime helps to make the most of people’s skills, promote feelings of self-worth, and enjoy the mealtime. Why is this lesson important? Dementia can affect eating and drinking in various ways depending on the stage of dementia and other health conditions. How will this lesson help me? By learning how to help create more pleasant mealtimes and prevent dehydration. What will I learn? 1. Making mealtimes more pleasant. 2. Promoting a good mealtime atmosphere. 3. Health conditions that affect eating and drinking. 4. Preventing dehydration. MODULE 4 Le ss on 1 . E at in g an d dr in ki ng - m or e p lea sa nt m ea lti m es Lesson 1. Eating and drinking - more pleasant mealtimes iS u p p o rt In te rv e n ti o n M an u al 109 Let’s look at an example MODULE 4 Le ss on 1 . E at in g an d dr in ki ng - m or e p lea sa nt m ea lti m es How would you advise Siya’s family to deal with this situation? Please select the answer that you think is correct from the list. „ Bring Siya’s dinner to her room. „ Demand that Siya joins them for dinner. „ Let Siya help with meal preparation and cleaning activities. 1. Check your understanding Making mealtimes more pleasant. Siya was a housewife and cooked every day for her family for many years. Recently, she lost her husband and now lives with one of her sons. Adi, her daughter-in-law, provides all the cooking in the new household. Siya has been very sad in her new home and says she’s not hungry when she is offered food. She does not join the family for dinner. iS u p p o rt In te rv e n ti o n M an u al 110 Mealtime activities Please select all activities from the list below that you think the person you care for can still engage in and would enjoy. Now, try to think about involving the person that you care for around mealtimes. Mealtime activities Example Washing or drying dishes Shopping together Meal preparation Preparation of the table Cleaning the table „ Let the person living with dementia choose what food and drinks they like to buy for breakfast, lunch and dinner. „ Let the person living with dementia help chopping, stirring, or cooking. „ Let the person living with dementia lay the table for breakfast, lunch and dinner. „ Let the person living with dementia remove everything from the dining table and wipe the table. „ Let the person living with dementia put dishes in the sink or wash and dry the dishes. 1. Activity MODULE 4 Le ss on 1 . E at in g an d dr in ki ng - m or e p lea sa nt m ea lti m es If you think that the person you care for can still engage in and would enjoy any of the listed activities, perhaps you could ask or assist them in trying these activities the next time you have a meal. iS u p p o rt In te rv e n ti o n M an u al 111 2. Promoting a good mealtime atmosphere Mealtime is a good opportunity for carers to show their care and support for the person living with dementia. An enjoyable mealtime atmosphere may help encourage them to eat and drink. Let’s look at an example again. Spilling food Shang has Alzheimer’s disease and lives with his oldest son since his wife passed away a year ago. The family now has four generations who eat together at the table. Shang sees the mealtime as the best time of the day. Recently, Shang’s hands have started to tremble and he often spills or drops food on the table and the floor. How would you advise Shang’s son to deal with this situation? Please check the responses that you feel are appropriate. „ Buy adaptive eating and drinking aids from the shop for Shang. „ Set up a separate table for his father to eat in his own bedroom, because spilling and dropping food may make the family irritated. „ Organize a family meeting to ask all family members to think of more positive and constructive ways to respond to the situation at mealtimes. 2. Check your understanding Promoting a good mealtime atmosphere. MODULE 4 Le ss on 1 . E at in g an d dr in ki ng - m or e p lea sa nt m ea lti m es iS u p p o rt In te rv e n ti o n M an u al 112 Health condition Changes that you may have observed Recommended actions you may try Poor appetite Toothache Poorly fitting artificial dentures „ Does not want to eat the meal „ Eats only small amounts of food „ Takes a long time to eat a small amount of food „ Refuses to eat and drink „ Is restless „ Has a facial expression indicating pain „ Refuses to eat and drink „ Is restless „ Has a facial expression indicating pain „ Refuses to wear dentures „ Throws dentures on the floor z Make food appealing: use different textures, flavours, smells, tastes, sounds and colours that the person enjoys z Eat with the family, rather than alone z Play soft music that they like during mealtime z Increase physical activities that they can do during the day z Ask whether the person is in pain z Ask them to point out the area of pain z Check whether there are loose teeth, mouth ulcers, etc. z Seek help from a doctor or dentist z See above for toothache z Check that the dentures are in good condition and fit properly Health conditions Common health conditions can affect eating and drinking. The activity below teaches you how to improve these conditions, if they are present. 2. Activity Le ss on 1 . E at in g an d dr in ki ng - m or e p lea sa nt m ea lti m es MODULE 4 iS u p p o rt In te rv e n ti o n M an u al 113 Diarrhoea Side effects from medications Does not have bowel movement for more than 7 days „ Liquid faeces „ Increased number of bowel movements „ Incontinency and difficulty controlling bowel movements „ Nausea, vomiting, liquid faeces or constipation „ Does not want to have a meal „ Eats only small amounts of food „ Hard and dry faeces „ Difficulty passing faeces/straining „ Having a feeling of incomplete bowel movements „ Becomes anxious or agitated „ Hard stomach „ Nausea and vomiting z Seek help from a doctor z Seek help from a doctor z Seek help from a doctor z Upon resolution of the problem: { Increase fibre in diet { Increase drinking of fluids { Increase physical activity Body pain „ Refuses to eat and drink „ Is restless „ Unusual body postures „ Has a facial expression of pain z Ask whether the person is in pain z Ask them to point out the area of pain z Seek help from a doctor Health condition Changes that you may have observed Recommended actions you may try 2. Activity Le ss on 1 . E at in g an d dr in ki ng - m or e p lea sa nt m ea lti m es MODULE 4 iS u p p o rt In te rv e n ti o n M an u al 114 Weight loss Weight gain Depression „ Forgets to eat „ Eats smaller amounts of food „ Eats regular amounts of food but still loses weight „ Eats all the food that is served „ Eats more snacks than before because they forget that they already ate „ Is obsessed with food „ Refuses to eat or says they are not hungry „ Eats small amounts of food „ Has no interest in food z Increase the amount of food z Provide foods that they will like z Increase flavourful foods as the person’s taste might be impaired z Seek advice from a doctor z Model eating and drinking z (i.e. eat and drink with the person) z Serve smaller portions z Remove the plate when the person indicates that they are full z Provide low calorie snacks z Seek help from a doctor Memory loss; forgets to eat or drink „ Asks when the next meal is even if it already happened „ The person says that they are hungry even if they already ate z Remind the person to eat and drink regularly z Model eating and drinking (i.e. eat and drink with the person) z Provide snacks between meal times Health condition Changes that you may have observed Recommended actions you may try 2. Activity Le ss on 1 . E at in g an d dr in ki ng - m or e p lea sa nt m ea lti m es MODULE 4 iS u p p o rt In te rv e n ti o n M an u al 115 4. Preventing dehydration People living with dementia have a higher risk of being dehydrated. There can be several reasons for this: z inability to explain their needs; z decreased thirst sensation; z not offered enough to drink; and, z swallowing problems in the late stage of dementia. The person you care for needs to be encouraged to drink 8-10 glasses (1500-2000 millilitres) of fluid (water, iced lollies, soup and juice, not including tea or coffee every day. Severe dehydration Ben has Alzheimer’s disease, but he is able to eat and drink without assistance from his wife, Mary. Ben likes to walk a lot. One hot afternoon, Mary also notices that Ben seems very tired, walks very slowly and then collapses on the floor. Ben is sent to the local hospital’s Emergency Department and is diagnosed with dehydration. After treatment in the hospital, Ben has recovered and is able to go home again. How would you advise Mary to deal with the situation after Ben is discharged home? Please select all the responses that you feel are appropriate. „ Mary needs to let Ben make the decision about when to drink. „ Mary needs to ensure that Ben drinks 8-10 glasses of water during the day. „ Mary records the time and the amount of fluid Ben actually consumes. 3. Check your understanding Severe dehydration. MODULE 4 Le ss on 1 . E at in g an d dr in ki ng - m or e p lea sa nt m ea lti m es iS u p p o rt In te rv e n ti o n M an u al 116 Timetable for eating and drinking The timetable below is for you to remind the person living with dementia to eat and drink. Give them the opportunity to choose what to drink. Time of day Type of fluid (e.g. water) Amount of fluid (e.g. 3 glasses) Morning - Noon Noon - Dinnertime Dinnertime - Bedtime 3. Activity WARNING! If the person you care for is not allowed fluids due to a heart condition, you need to follow the doctor’s order regarding how much to drink. MODULE 4 Le ss on 1 . E at in g an d dr in ki ng - m or e p lea sa nt m ea lti m es iS u p p o rt In te rv e n ti o n M an u al 117 Let’s review what you have learned z The person you care for needs to be encouraged and supported to eat and drink. z You can engage the person you care for in a variety of mealtime activities to create a pleasant mealtime for them, which helps to improve self-worth and a feeling of achievement. z Eating and drinking can be facilitated by modifying food, utensils and the environment. z You can maintain good eating and drinking for the person you care for by improving their health condition. Seeking assistance from health professionals might be necessary. z To help prevent dehydration, it is important to prompt the person living with dementia to drink. z Record and monitor the amount of fluid they consume. MODULE 4 Le ss on 1 . E at in g an d dr in ki ng - m or e p lea sa nt m ea lti m es You finished this lesson, well done! iS u p p o rt In te rv e n ti o n M an u al 118 iS u p p o rt In te rv e n ti o n M an u al How could Siya’s family deal with the situation? 8 Bring Siya dinner in her room. This is not helpful because it might further isolate Siya from her family. Siya may not feel welcome in the new home. She has lost her husband, her own home and now also her previous roles as cook and housekeeper. 8 Demand that Siya joins them for dinner. This is not such a good response because it may make Siya angry or cause her to further withdraw. 9 Siya’s family should let her help with the meal preparation and cleaning activities. This is a good response because her family knows Siya still enjoys cooking and should therefore support her to continue engaging in the activities that she likes and is still able to do. AN SW ER S - P RO VI DI NG E VE RY DA Y CA RE • Le ss on 1 1. Check your understanding Making mealtimes more pleasant. ANSWERS - PROVIDING EVERYDAY CARE Lesson 1. Eating and drinking - more pleasant mealtimes iS u p p o rt In te rv e n ti o n M an u al 119 iS u p p o rt In te rv e n ti o n M an u al 9 Buy adaptive eating and drinking aids from the shop for Shang. This is a good response because Shang’s son recognises that his father is no longer able to manage eating and drinking using the usual utensils. By providing other utensils he is trying to solve this problem. 8 Set up a separate table for his father to eat in his own bedroom, because spilling and dropping food may make the family irritated. This is not helpful because separation will make Shang feel sad or angry, which might prevent him from eating and drinking properly. 9 Organise a family meeting to ask all family members to think of more positive and constructive ways to respond to the situation at mealtimes. This is a good response because Shang’s son is trying to provide a positive mealtime atmosphere for everyone. 2. Check your understanding Promoting a good mealtime atmosphere. How could Shang’s son deal with the situation? AN SW ER S - P RO VI DI NG E VE RY DA Y CA RE • Le ss on 1 iS u p p o rt In te rv e n ti o n M an u al 120 iS u p p o rt In te rv e n ti o n M an u al How could Mary deal with this situation after Ben is discharged home? 8 Mary needs to let Ben make the decision about when to drink. This answer is not so good even though she is respecting Ben’s autonomy. Since people with dementia have decreased thirst sensation, it could be dangerous to leave it up to them whether to drink or not without reminding them. If not reminded, Ben may get dehydrated again and collapse. 9 Mary needs to ensure that Ben drinks 8-10 glasses of water during the day. This is a good response. Mary notices that Ben may forget to drink, so she is trying to help her husband drink enough water every day. 9 Mary records the time and the amount of fluid Ben actually consumes. This is a good response. It can be helpful to establish a routine and record the number of glasses Ben drinks from breakfast time to dinner time. Drinking after dinner time may potentially increase night time visits to the bathroom. 3. Check your understanding Severe dehydration. AN SW ER S - P RO VI DI NG E VE RY DA Y CA RE • Le ss on 1 iS u p p o rt In te rv e n ti o n M an u al 121 1. Improve eating and prevent weight loss In the late stages of dementia, a person living with dementia may experience difficulty chewing and swallowing. Reduced abilities to smell, taste and see may also happen due to ageing and dementia. These can have a negative impact on the person’s health. Depression and changes in eating patterns may also impair eating and digestion. Let’s look at an example Chiu has been living with dementia for 9 years and is cared for by her daughter, Ling. Recently, Ling notices that her mother sleeps during the day and is very difficult to wake and assist with her meals during the normal mealtimes. Ling believes that her mother is not hungry and does not want to disturb her sleep. A recent check-up showed that Chiu has lost 2.5 kg since the last check-up 5 weeks ago (5% of her body weight). Why is this lesson important? Dementia can affect eating and drinking in various ways depending on the stage of dementia and other health conditions. How will this lesson help me? By learning how to improve eating and drinking, prevent weight loss and promote drinking and eating safely. What will I learn? 1. Improve eating and prevent weight loss. 2. Help the person you care for to eat safely and prevent aspiration pneumonia. MODULE 4 Le ss on 2 . E at in g, d rin ki ng a nd p re ve nt in g he al th p ro bl em s Lesson 2. Eating, drinking and preventing health problems iS u p p o rt In te rv e n ti o n M an u al 122 What would you advise Ling to do to improve Chiu’s eating? Please select all the responses that you feel are appropriate. „ Be flexible to have meals when her mother is awake. „ In a diary, keep a record of what and how often her mother eats. „ Ensure Chiu has access to foods she enjoys eating. 2. Help the person you care for to eat safely and prevent aspiration pneumonia People with dementia may experience the problems listed below. z People with dementia may not be able to judge what can or cannot be eaten. They may eat inedible materials that are within reach when feeling hungry. Make sure to keep inedible materials and chemicals in safe places. z If the person is in the late stages of dementia, they may experience swallowing difficulties that can cause a lung infection called aspiration pneumonia. Aspiration pneumonia occurs when food is swallowed in the wrong way and goes into the person’s lungs instead of their stomach. This can then cause an infection. Eating, drinking and feeding methods may need to be modified to prevent this life-threatening problem. 1. Check your understanding How to improve eating and prevent weight loss. MODULE 4 Le ss on 2 . E at in g, d rin ki ng a nd p re ve nt in g he al th p ro bl em s iS u p p o rt In te rv e n ti o n M an u al 123 What do you think Ella should do? Please select all the responses that you feel are appropriate. „ Recognize that she needs to lock household chemicals, such as dishwashing soap, in a cabinet. „ Leave some inedible household materials in the places Oliver is able to reach, because she thinks Oliver should be taught that those cannot be eaten. MODULE 4 Le ss on 2 . E at in g, d rin ki ng a nd p re ve nt in g he al th p ro bl em s 2. Check your understanding Inedible materials. Inedible materials Oliver has been living with dementia for 10 years and is cared for by his wife, Ella. Ella starts to observe her husband closely during the day. Recently, Ella notices that the soaps she put in the kitchen and bathroom have disappeared. She also notices that her husband is eating the flowers that she puts on the dining table. She sees Oliver go to the kitchen and mistakenly pick up a soy sauce bottle and even a bottle of dishwashing detergent to drink. iS u p p o rt In te rv e n ti o n M an u al 124 What do you think Wei should do? Please select all the responses that you feel are appropriate. „ Learn how to make healthy, soft foods and thickened drinks for Lu. „ Not pay attention to how Lu is sitting when he helps her eat. A healthy soft diet can be made by hand without using an electric blender. Thickened fluids can be made by adding corn flour to water or other fluids while heating and stirring it, until it thickens. Note: commercial stir-in thickeners are available in the supermarket in many countries. MODULE 4 Le ss on 2 . E at in g, d rin ki ng a nd p re ve nt in g he al th p ro bl em s 3. Check your understanding Helping a person to eat safely. Tip Helping a person to eat safely Lu has been living with dementia for 10 years and is bedridden. Her husband, Wei, helps her to eat safely. Recently, he found Lu has difficulty swallowing soft foods that he makes for her. He also notices that she coughs when she drinks something. She seems to have a high temperature and is admitted to the hospital. Lu is diagnosed with aspiration pneumonia. After a month of treatment in the hospital, Lu has recovered and is discharged home. The doctor orders a healthy, soft diet and thickened drinks for Lu to consume at home to prevent future aspiration pneumonia. iS u p p o rt In te rv e n ti o n M an u al 125 You finished this lesson, well done! MODULE 4 Le ss on 2 . E at in g, d rin ki ng a nd p re ve nt in g he al th p ro bl em s Let’s review what you have learned z You can modify eating patterns for the person you care for to improve nutrition. z You can help the person living with dementia to eat and drink safely by keeping inedible materials and household chemicals in a safe place. z You can help prevent aspiration pneumonia by modifying the foods and drinks that they eat and positioning the person you care for in an upright position when helping them eat. iS u p p o rt In te rv e n ti o n M an u al 126 iS u p p o rt In te rv e n ti o n M an u al What would you advise Ling to do to improve Chiu’s eating? 9 Be flexible to have meals when her mother is awake. This is a good response. People in late stages of dementia need rest, so flexibility in planning meals will be very helpful when they are sleeping during normal mealtimes. 9 Keep a record of what and how often her mother eats in a diary. This is a good response. Recording what people with dementia eat is important. This way, carers will better understand when and what kind of food is needed for sufficient food intake. 9 Ensure Chiu has access to foods that she enjoys eating. This is a good response. What foods did she enjoy eating before her diagnosis of dementia? What foods does she seem to enjoy now? 1. Check your understanding How to improve eating and prevent weight loss. ANSWERS - PROVIDING EVERYDAY CARE Lesson 2. Eating, drinking and preventing health problems MODULE 4 AN SW ER S - P RO VI DI NG E VE RY DA Y CA RE • Le ss on 2 iS u p p o rt In te rv e n ti o n M an u al 127 iS u p p o rt In te rv e n ti o n M an u al What do you think Ella should do? 9 Recognize that she needs to lock household chemicals, such as dishwashing soap, in a cabinet. This is a good response. Keeping these dangerous things away will help protect the person living with dementia. 8 ✗Leave some inedible household materials in the places Oliver is able to reach because she thinks that Oliver should be taught that those cannot be eaten. This is not a good response. People in late stages of dementia can have a changed judgement of what they can or cannot eat. Keeping these dangerous things away from them is very important. How can Wei help Lu? 9 Learn how to make healthy, soft food and thickened drinks for Lu. This is a good response. Providing healthy, soft food and thickened drinks will make it easier for people in the late stage of dementia to continue to eat and drink on their own and maintain a healthy weight. 8 ✗Not pay attention to how Lu is sitting when they are helping her eat. This is not a good response. They should sit Lu in an upright position which will help her eat and drink better and prevent aspiration pneumonia. 2. Check your understanding Inedible materials. 3. Check your understanding Helping a person to eat safely. MODULE 4 AN SW ER S - E AT IN G, D RI NK IN G AN D PR EV EN TI NG H EA LT H PR OB LE M S • L es so n 2 iS u p p o rt In te rv e n ti o n M an u al 128 1. Possible solutions for problems such as urinating on the floor or losing bladder control Urinating on the floor Dementia can affect a person’s ability to find their way to the bathroom and identify the toilet and/or toilet seat. You should not blame the person living with dementia for this behaviour, nor punish them as this type of response will cause them and yourself stress. Modifying your house may help them use the bathroom. Why is this lesson important? Poor toileting and incontinence may lead to infections and other health problems, low self-esteem and withdrawal from social activities for a person living with dementia. How will this lesson help me? This lesson will help you think about the health concerns, and assist the person you care for with using the toilet and continence. What will I learn? 1. Possible solutions for problems such as urinating on the floor or losing bladder control. 2. Using incontinence aids and equipment. MODULE 4 Le ss on 3 . T oi let in g an d co nt in en ce ca re Lesson 3. Toileting and continence care iS u p p o rt In te rv e n ti o n M an u al 129 Zhen is taking care of her husband, Fu, since he developed vascular dementia several years ago. Fu is able to go to the toilet himself without assistance, but recently, Zhen finds Fu urinating on the floor outside the toilet. Let’s look at an example Below are some tips in case the person you care for experiences difficulties using the toilet. z Put an image of a toilet on the toilet door to help them find it. z Provide directions to the toilet if they are unable to find it. z Provide adequate nightlights in the hallway between the bedroom and the toilet. z Use contrasting colours for the toilet seat. z Change the person’s trousers to some that are easier to remove. z Provide step-by-step instructions to the person if they forget how to use the toilet. What do you think is the right response for Zhen? Please select the correct answer. „ Make some simple changes to the environment and clothing, such as putting an image of a toilet on the bathroom door, using a contrasting colour for the toilet seat or changing Fu’s trousers to a pair of pants that does not need a belt. „ Tell her husband, Fu, that he is making trouble and punish him by not taking him for his daily walk in their neighbourhood. 1. Check your understanding Prevent urinating on the floor. Tip MODULE 4 Le ss on 3 . T oi let in g an d co nt in en ce ca re iS u p p o rt In te rv e n ti o n M an u al 130 Contributing factors Recommended solutions A long distance to go to the toilet in the house Public toilet that is at a distance from the house Not being able to find the toilet Not enough colour contrast of the toilet seat Not enough lighting in the hallway Not enough lighting in the toilet z Direct the person you care for to the toilet z Provide a bedside commode at night z Use nightlights in the bedroom and the house z Provide a commode for them to use in the house z Put a picture of a toilet on the toilet door z Replace the toilet seat with a different colour to increase the contrast z Provide adequate lighting in the hallway z Provide adequate lighting in the toilet What other factors may contribute to urinating on the floor or losing bladder control? Le ss on 3 . T oi let in g an d co nt in en ce ca re iS u p p o rt In te rv e n ti o n M an u al 131 Contributing factors Recommended solutions Narrow toilet doors that do not allow the walker or wheelchair to pass Visual impairment Unable to undo trousers Forgetting what to do in the toilet z Modify the door opening to allow a walker or wheelchair to pass z Direct the person you care for to the toilet during the day z Provide a bedside commode at night z Change trousers to ones that are easily undone and removed z Assist the person you care for to pull on and do up trousers z Remind the person you care for of the activities they need to do z Provide step-by-step instructions for them to use the toilet Le ss on 3 . T oi let in g an d co nt in en ce ca re iS u p p o rt In te rv e n ti o n M an u al 132 What do you think is the right response for Joshua? Please select the correct answer. „ Since this is an embarrassing situation for Joshua, he should stop taking his mother shopping. „ Joshua should try to make sure that his mother uses the toilet before leaving to go shopping. MODULE 4 Le ss on 3 . T oi let in g an d co nt in en ce ca re 2. Check your understanding Dealing with losing bladder control. Urinating in public places Dementia affects the person’s ability to explain their needs, for example needing to go to the bathroom. Additionally, dementia can affect a person’s judgement of what is normal or not in public. You could help prevent these accidents (incontinence) by maintaining a regular, daily schedule to assist the person you care for to go to the toilet. Identifying how often they used the toilet before they had dementia might be helpful. You can also identify whether the person you care for needs to go to the bathroom by the way they behave, e.g. if they become agitated, stressed, anxious or restless. Let’s look at an example Joshua is taking care of his mother Esther, who received a diagnosis of dementia 5 years ago. Joshua usually takes his mother shopping in the neighbourhood as she enjoys meeting people. Recently, Joshua notices that his mother has lost bladder control during the day. iS u p p o rt In te rv e n ti o n M an u al 133 06:00-09:00 09:00-12:00 12:00-15:00 15:00-18:00 18:00-21:00 21:00-00:00 0:00-03:00 03:00-06:00 Time Number of trips to the toilet Number of times lost control of bladder or bowel What possible causes did you observe? Toilet use diary Date: To improve bladder or bowel control, it may help to fill out a toilet diary. Le ss on 3 . T oi let in g an d co nt in en ce ca re iS u p p o rt In te rv e n ti o n M an u al 134 There are numerous disposable and/or washable incontinence aids, pads and equipment. When selecting products, you should consider their cost, effectiveness, comfort and convenience. For bedridden males, using urinals to collect urine may help. Some of these urinals are designed to prevent the backward leaking of urine. In the late stages of dementia, the person living with dementia may not be able to control their bladder and bowel movements. Before using any incontinence aids and equipment, you should ask a health professional to help identify the cause(s) of incontinence, as these may be treatable and therefore reversible. Tip MODULE 4 Le ss on 3 . T oi let in g an d co nt in en ce ca re 2. Using incontinence aids and equipment iS u p p o rt In te rv e n ti o n M an u al 135 Let’s look at an example Gloria is in a late stage of Alzheimer’s disease and is living with her son’s family. Her daughter-in-law, Marina, is taking care of her. Since Gloria cannot control her bladder or bowel movement, the doctor suggests that Marina try incontinence pads for Gloria. In the beginning, Marina encounters a number of problems: z Gloria constantly takes the pad off and throws it on the floor. z Gloria still has wet pants even when using incontinence pads. z Gloria has skin problems in her genital area. MODULE 4 Le ss on 3 . T oi let in g an d co nt in en ce ca re 3. Check your understanding Use of personal hygiene products. What do you think is the right response for Gloria? Please select the correct answer. „ Marina should force Gloria to wear the pad. „ Marina should remind her mother-in-law to use the bathroom at scheduled times if she is not doing so herself. iS u p p o rt In te rv e n ti o n M an u al 136 Tip Constantly taking the pad off and throwing it on the floor Still having wet pants even while using the incontinence pads Having sore or irritated skin in the genital area Having fever, being in pain, strong smelling urine z Feeling uncomfortable with the pad z The pad size is wrong z The pad is wet and needs to be changed z Check whether the pad size is correct z Change the wet pad on time z Consult the doctor regarding the person’s behaviour z Use the right size and type of pad z Maintain scheduled trips to the toilet to minimize the use of pads z Select suitable pad size and type z Change the soiled pad on time and maintain hygiene around genital area z Apply protective creams or lotions that maintain healthy skin z See the doctor z Maintain an intake of 6-8 glasses of water or juice per day except if the person is under fluid or dietary restriction z Maintain good genital care z The pad size is incorrect z The schedule for using the toilet has not been maintained z Incontinence pads can cause skin breakdown z Unsuitable pad size and delaying changes of soiled pads in a timely manner can cause skin infection z Urinary tract infections are triggered by a number of factors, including incontinence and poor genital care Below are some tips for incontinence care. Problems Possible causes Recommended solutions Le ss on 3 . T oi let in g an d co nt in en ce ca re iS u p p o rt In te rv e n ti o n M an u al 137 Let’s review what you have learned z Do not blame the person after any accidents, such as urinating on the floor. z Modify the environment to reduce the chance of bladder and bowel accidents (for example, put a picture of a toilet on the bathroom door). z Take the person living with dementia to the toilet regularly to reduce accidents. z The frequency of toilet visits will need to be established based on the toilet pattern that the person living with dementia had before the onset of dementia. z If these changes do not help, incontinence aids and equipment may help. z Be aware that the use of incontinence aids can irritate the skin if used incorrectly. z Maintain good genital care to reduce the risk of a urinary tract infection. z If the person living with dementia is not under fluid restriction, encourage them to drink 6-8 glasses of water or juice per day to help prevent urinary tract infections. MODULE 4 Le ss on 3 . T oi let in g an d co nt in en ce ca re You finished this lesson, well done! For more tips on how to stay in control of your feelings please refer back to Lesson 3.Thinking differently in Module 3. Tip iS u p p o rt In te rv e n ti o n M an u al 138 iS u p p o rt In te rv e n ti o n M an u al 9 Make some simple changes to the environment and clothing, such as putting an image of a toilet on the bathroom door, using a contrasting colour for the toilet seat or changing Fu’s trousers to a pair of pants that doesn’t need a belt. This is the best answer. People with dementia may have difficulties finding and using the toilet, so these changes could help Fu. What do you think is the right response for Zhen? 8 Tell her husband that he is making trouble and punish him by not taking him for his daily walk in their neighbourhood. This is not a good answer. You should never threaten people with dementia in this way. Fu will feel ashamed and embarrassed and this response could cause him to become upset. 1. Check your understanding Prevent urinating on the floor. ANSWERS - PROVIDING EVERYDAY CARE Lesson 3. Toileting and continence care MODULE 4 AN SW ER S - P RO VI DI NG E VE RY DA Y CA RE • Le ss on 3 iS u p p o rt In te rv e n ti o n M an u al 139 iS u p p o rt In te rv e n ti o n M an u al 8 ✗Since this is an embarrassing situation for Joshua, he should stop taking his mother shopping. This is not the best response because his mother will miss out on a very important pleasant activity. What do you think is the right response for Joshua? 9 Joshua should try to make sure that his mother uses the toilet before leaving to go shopping This is a good response. It is a good way to help prevent Esther from losing bladder control. 8 Marina should force Gloria to have the pad on. This is not the right answer! It’s very important to check why a person living with dementia may feel uncomfortable with the pad. Is the size wrong? Is the pad wet and does it need to be changed? What do you think is the right response for Marina? 9 Marina should remind her mother-in-law to use the toilet at scheduled times if she is not doing so herself. This is the best answer. Scheduled toilet visits may help minimise incontinence and the need for pads. 2. Check your understanding Dealing with losing bladder control. 3. Check your understanding Use of personal hygiene products. AN SW ER S - P RO VI DI NG E VE RY DA Y CA RE • Le ss on 3 iS u p p o rt In te rv e n ti o n M an u al 140 1. Modifying the environment to make personal care easier There are different reasons for not being able to perform personal care. One reason is that people with dementia may not find the things that they need for personal care. For example, when you cannot find your toothbrush and toothpaste due to memory loss, it will be difficult to brush your teeth. However, you can modify the environment to make it easier for them to find things that are needed for personal care. Why is this lesson important? Dementia affects people’s ability to maintain personal care, for example brushing teeth, showering/bathing and grooming. Therefore, assistance with maintaining good personal care is very important. Poor personal care may lead to infections and other health problems, low self-esteem and withdrawal from social activities for people with dementia. How will this lesson help me? This lesson will help you think about the health concerns of the person you care for and assist them with personal care. What will I learn? 1. Modifying the environment to make personal care easier. 2. Tips for daily dressing, oral care and assisting in bathing. MODULE 4 Le ss on 4 . P er so na l c ar e Lesson 4. Personal care iS u p p o rt In te rv e n ti o n M an u al 141 What would you think is the right response for Mohammed? Please select the correct answer. „ Put personal care items in the order of use and label them with large print words and different colours for Mariam to read. „ Ask their daughter-in-law to take Mariam from the table to the bathing room and assist her with washing and changing clothes. Let’s look at an example Mariam has Alzheimer’s disease, but she is able to care for herself without assistance from family members. Recently, her husband, Mohammed, notices that she sits at the table for breakfast in a nightgown without having washed her face, brushed her hair, or doing her make-up as she usually does. There may be several reasons why Mariam may not undertake personal care before breakfast anymore. One of them is that she may be depressed. For more information on depression please see Lesson 4. Depression, anxiety or apathy in Module 5. Below are some tips that may help people with dementia find items or places, and to do personal care activities independently. z To find the bathroom or toilet: put a picture or words on the bathroom door or direct the person to the bathroom. z To find personal care materials: make items easy to see in the bathroom, label items with their name, use pictures or words on the bathroom wall to point out items, use contrasting colours. z To help turn the tap on and off: use colour indicators to label the direction for turning the tap on and off, instruct the person to turn the tap on and turn off, assist if needed. MODULE 4 Le ss on 4 . P er so na l c ar e 1. Check your understanding Promoting personal hygiene. Tip iS u p p o rt In te rv e n ti o n M an u al 142 2. Tips for daily dressing, oral care and assisting in bathing Difficulties choosing the right clothes or dressing appropriately Dementia can affect the person’s ability to choose clothes and dress appropriately. You can assist the person you care for to choose clothes and to dress in a way that makes the most use of their remaining skills. You should not take over these tasks when the person living with dementia can still perform them. What would you think is the right response for Jane? Please select the correct answer. „ Tell Ted that he needs to be less messy, choose clothes for Ted and dress him. „ Remind Ted to lay out his clothes in the evening and encourage him to wear pants that do not need a belt and shoes that do not need laces. Let’s look at an example Ted has Alzheimer’s disease and is cared for by his wife Jane. Ted used to lay out his clothes for the next day in the evening. Recently, Jane found that Ted forgets to do this and is inclined to wear the same clothes every day. Jane also observes that Ted leaves some buttons of his shirt undone, his belt unbuckled and forgets to lace up his shoes. MODULE 4 Le ss on 4 . P er so na l c ar e 2. Check your understanding Getting dressed. iS u p p o rt In te rv e n ti o n M an u al 143 Difficulties brushing one’s teeth Dementia not only affects memory but also organization, coordination and concentration, which are required to perform mouth care. Poor mouth care is associated with poor appetite, bad breath, infections of the teeth or gums and other health problems. The goal of assisting with mouth care is to help the person make the most use of their remaining skills. What would you think is the right response for Lingling? Please select the correct answer. „ Put Guoliang’s dentures into his mouth without asking. „ Instruct her husband how to brush his teeth step-by-step and praise him when he is doing well. Let’s look at an example Guoliang has Alzheimer’s disease but is able to brush his teeth without assistance. Recently, Guoliang’s wife, Lingling notices that her husband makes a big mess in the bathroom with water and toothpaste on the countertop and the floor. She also observes that her husband is unable to brush his teeth in the order that he usually does and can’t insert his artificial dentures himself. MODULE 4 Le ss on 4 . P er so na l c ar e 3. Check your understanding Promoting mouth care. iS u p p o rt In te rv e n ti o n M an u al 144 Please select any mouth care steps that the person you care for needs help with from the list below. „ Putting toothpaste on the toothbrush „ Brushing teeth in an order that will clean teeth and gums „ Rinsing and cleaning mouth „ Using floss or toothpick to clean between teeth daily „ Applying balm to moisturize lips when needed „ Checking for signs of mouth infections or toothache when needed „ Removing, washing, cleaning, and storing artificial dentures if needed 1. Activity MODULE 4 Le ss on 4 . P er so na l c ar e iS u p p o rt In te rv e n ti o n M an u al 145 Difficulties performing personal care and bathing Dementia may also affect the person’s ability to wash their hair and take a shower or a bath. A person living with dementia may view assistance with personal care as a threat to his or her privacy, safety and security, and may refuse or resist any help. Let’s look at an example Feng has Alzheimer’s disease and is cared for by his wife Yuan. Due to her age, Yuan is not strong enough to help bathe Feng anymore, so the family decides that the three sons-in-law could take turns to help with Feng’s weekly bath. The oldest son-in-law is very kind to Feng and reassures him that he will make him comfortable during the bath. He takes Feng to the bathroom and starts to undress him. Feng suddenly pushes him away, shouts at him and tells him to go away. MODULE 4 Le ss on 4 . P er so na l c ar e 4. Check your understanding Resisting help with bathing. What would you think is the right response for Feng’s family? Please select the correct answer. „ Since the family notices that Feng thought his son-in- law was a stranger, Yuan decides to be with Feng while her son-in-law bathes him. „ They should say to Feng that he should be grateful for the help he receives and if he continues to behave this way, he will be sent to a long-term care facility. iS u p p o rt In te rv e n ti o n M an u al 146 People with dementia may show resistance during personal care, or even become aggressive like Feng in this example. To read more about how to prevent or deal with aggression, please refer to Lesson 3. Aggression in Module 5. Below are some tips for assisting with bathing. z Identify the times of day that the person you care for prefers to have a bath/shower. z Switch from a shower/bath to a sponge bath. (Note: bath tubs are particularly difficult as they may lead to falls and it may be hard for the carer to lift the person living with dementia out of the tub.) z If using the shower or bathtub, use a non-slip bath or shower mat to help prevent falls. z Adaptive seating or equipment, such as grab bars and shower chairs, may help. z For people with dementia who are afraid of water, try to reduce the water flow. Tip MODULE 4 Le ss on 4 . P er so na l c ar e When assisting with personal care, ask the person living with dementia for their preferences whenever possible and respect their choice. Reassure them that they are safe and comfortable. iS u p p o rt In te rv e n ti o n M an u al 147 Select any personal care activities that the person living with dementia needs help with. Coach them through the individual steps involved in each activity. „ Selecting daytime clothing „ Undressing before shower/bath „ Taking pyjamas off/on „ Shaving „ Washing and drying face „ Applying body lotion to moisturize skin „ Drying body after washing „ Combing hair „ Preparing for a shower/bath „ Putting on make-up „ Putting non-slip mats on the floor „ Washing hair/body during shower/bath „ Washing and drying hands „ Using towel to dry hair/body „ Washing and drying genital areas „ Dressing after shower/bath „ Washing and drying feet „ Checking for signs of skin problems „ Changing night clothing into daytime clothing „ Using electrical hairdryer „ Turning the tap on, adjusting the water temperature and preparing for bathing „ Cutting fingernails and toenails when needed MODULE 4 Le ss on 4 . P er so na l c ar e 2. Activity iS u p p o rt In te rv e n ti o n M an u al 148 Let’s review what you have learned z Engage the person living with dementia in personal and mouth care as long as possible, using remaining skills. z Modify the environment, for example by providing guidance, encouraging them to select different types of clothes or providing seating while performing personal care. z Engage the person you care for in daily decision making, for example what clothes they would like to wear. z Keep in mind that not have enough assistance with personal care may cause agitation or aggression. z Be compassionate and try to understand why they resist being assisted with personal care. You finished this lesson, well done! MODULE 4 Le ss on 4 . P er so na l c ar e iS u p p o rt In te rv e n ti o n M an u al 149 iS u p p o rt In te rv e n ti o n M an u al 9 Put personal care items in the order of use and label them with large print words and different colours for Mariam to read. This is a good response. People with dementia may lose the ability to find items that are not obvious. Creating an ‘easy to find’ environment for them is very important. What do you think is the right response for Mohammed? 8 Ask their daughter-in-law to take Mariam from the table to the bathing room and assist her with washing and changing clothes. This is not the right answer. Mohammed needs to first find out what the reason is for her not doing the personal care before breakfast anymore. Also, instead of assuming, Mohammed needs to ask his wife first if she wants help from their daughter-in- law. Not asking may upset her. ANSWERS - PROVIDING EVERYDAY CARE Lesson 4. Personal care MODULE 4 AN SW ER S - P RO VI DI NG E VE RY DA Y CA RE • Le ss on 4 1. Check your understanding Promoting personal hygiene. iS u p p o rt In te rv e n ti o n M an u al 150 iS u p p o rt In te rv e n ti o n M an u al What do you think is the right response for Jane? 8 Tell Ted that he needs to be less messy, choose clothes for Ted and dress him. This answer is not helpful. It is not Ted’s fault that he is finding this task challenging. With some extra help, Ted may still be able to dress himself. 9 Remind Ted to lay out his clothes in the evening and encourage him to wear pants that do not need a belt and shoes that do not need laces. You are right! It will enable Ted to dress himself, which may also help improve his sense of self-worth. 8 Put Guoliang’s dentures in his mouth without asking. This is not the right answer. Lingling is completely taking over care tasks and not even asking his permission. This response may upset Guoliang. 9 Instruct Guoliang how to brush his teeth in a step-by- step manner and praise him when he is doing well. This is the best answer. Guoliang maintains a level of independence in this way, which may also help to improve his sense of self-worth. MODULE 4 AN SW ER S - P RO VI DI NG E VE RY DA Y CA RE • Le ss on 4 2. Check your understanding Getting dressed. 3. Check your understanding Promoting mouth care. What do you think is the right response for Lingling? iS u p p o rt In te rv e n ti o n M an u al 151 iS u p p o rt In te rv e n ti o n M an u al 9 Since the family notices that Feng thinks that his son-in-law is a stranger, Yuan decides to be with Feng while her son-in-law bathes him. Good advice! A person living with dementia may no longer recognize people they used to know, so giving them plenty of transition time to get familiar with people is very important. MODULE 4 AN SW ER S - P RO VI DI NG E VE RY DA Y CA RE • Le ss on 4 4. Check your understanding Resisting help with bathing. 8 They should say to Feng that he should be grateful for the help that he receives and if he continues to behave in this way, he will be sent to a long-term care facility. This is bad advice. Never threaten people with dementia in this way. Saying things like this will not help the situation and will make Feng feel very distressed. What do you think is the right response for Feng’s family? iS u p p o rt In te rv e n ti o n M an u al 152 1. Establishing routines for the person with dementia during the day When someone is living with dementia, it is important to create an environment that supports them to do the things that they like to do. This is also true for you. It is important to try and maintain routines and activities that are familiar to the person living with dementia, and to adapt them as their abilities change. Why is this lesson important? It is important to maintain routines and activities that are familiar to a person living with dementia to help create an enjoyable day. How will this lesson help me? By learning how to adapt routines and activities as the abilities of the person living with dementia change. What will I learn? 1. Establishing routines for the person with dementia during the day. 2. Adapting routines to the changing abilities of the person you care for. Lesson 5. An enjoyable day MODULE 4 Le ss on 5 . A n en jo ya bl e d ay iS u p p o rt In te rv e n ti o n M an u al 153 What is a routine? A routine is something that a person does every day or almost every day. It is important to try and continue the routine of the person living with dementia for as long as possible. This is reassuring and can reduce stress at home. Be aware of the person’s usual routine. If there has not been a routine, for example in the evening, then it is helpful to develop one and follow it regularly. This might include drinking a cup of tea, listening to soothing music, or saying prayers. It is helpful to have routines for other times of the day as well, such as immediately after getting up from bed in the morning, when having the midday meal or planning what to do in the afternoon. The simpler and easier these routines are to follow, the more likely they will reassure the person living with dementia and reduce stress at home. Morning time: starting the day It’s helpful to have a set time for waking up and then several things to do in sequence to get the day started. Think of bathing, brushing one’s teeth, getting dressed and then sitting down for breakfast. As dementia progresses, the person you care for will need help with each of these activities but one way to lower stress is to keep the basic routines as similar as possible. During the day, it’s also important to try and make time for activities that the person living with dementia enjoys, such as visiting a friend or another family member, going for a walk, reading, playing games, or listening to the radio. These activities will depend on the person’s prior interests and current abilities. In the early stages of dementia, your family member or friend may be able to do things that they like to do with minimal guidance. However, as the disease progresses, activities will need to be changed or modified so that they can still enjoy them. It’s important to be flexible and creative in figuring out the routines and then adapting them as needed over time. MODULE 4 Le ss on 5 . A n en jo ya bl e d ay iS u p p o rt In te rv e n ti o n M an u al 154 What suggestions do you have for Penny? Please select the correct answer from the responses below. „ If Penny suggests keeping to the routine by drinking tea first, it is likely that Martha will go for a walk afterwards. „ Penny should ask Martha what activities she is used to and in what order she would like to do them. „ Penny should force Martha to go for a walk because it was advised by the doctor. It is important to keep routines (something the person living with dementia does every day or almost every day) for as long as possible. This may help to avoid confusion, agitation, restlessness and boredom. It also helps to honour the person’s dignity. Think for a moment about how you might feel if your routines were changed or planned by another person. MODULE 4 Le ss on 5 . A n en jo ya bl e d ay 1. Check your understanding Morning routines. Keep in Mind Let’s look at an example Martha has dementia and is used to drinking tea immediately after getting ready in the morning. Her daughter Penny really wants to encourage her mother to walk every day, as recommended by her doctor. Penny is not aware of her mother’s usual routine, so when she tries to get Martha to go for a walk right after breakfast, Martha refuses. iS u p p o rt In te rv e n ti o n M an u al 155 z It is important to develop routines for morning activities and maintain them as long as possible. z Make adjustments as needed when the abilities of the person living with dementia change. 2. Adapting routines to the changing abilities of the person you care for It is important to adapt routines as the abilities of the person living with dementia change. Here are some common routines to establish during the day for a person living with dementia. In the morning Wake up at the same time every day z Adaptation: help might be needed to wake up because the person with dementia may not be able to set the alarm correctly. Have breakfast at a fixed time. In the earlier stages of dementia, your family member or friend might be able to make their own breakfast. z Adaptation: the person with dementia may need someone to lay out ingredients. Later on, they may need more help with preparing and eating breakfast. Performing grooming activities, such as brushing teeth, bathing/ cleaning, getting dressed. In the early stages, the person you care for may be able to do all of these activities without help. z Adaptation: items such as the toothbrush, toothpaste, etc. can be laid out in the bathroom in plain view to prompt the activity. In the later stages of dementia, it may be necessary for someone to do these activities for, or with, the person living with dementia. For more tips, please refer back to Lesson 4. Personal care in this module. MODULE 4 Le ss on 5 . A n en jo ya bl e d ay Keep in Mind iS u p p o rt In te rv e n ti o n M an u al 156 MODULE 4 Le ss on 5 . A n en jo ya bl e d ay What suggestions do you have for Penny? Please select the correct answer from the responses below. „ Penny should put away the baking and cooking pans and tell her mother that it’s just not possible to do this anymore. „ Penny should go shopping with her mother and buy easy to prepare cakes and cookies, “out of the box”, with limited added work to enable Martha to continue to do some cooking and baking. „ As Martha’s abilities change, Penny could plan some time during the afternoon to bake and cook with her mother. 2. Check your understanding Maintaining prior activities and interests during the day. Let’s look at an example Martha loves baking and used to prepare special cakes and cookies for family gatherings. Now that she has dementia, she sometimes forgets the ingredients and the order in which to put them in. At first, Martha uses a cookbook to help her continue baking but she finds this increasingly difficult. The cakes and cookies do not taste very good and have to be thrown away. Penny wants to help her mother keep up this activity. During the day It is helpful to plan activities that the person you care for enjoys doing, based on their prior interests and current abilities. iS u p p o rt In te rv e n ti o n M an u al 157 What suggestions do you have for Penny? Please select the correct answer from the responses below. „ Penny could ask another family member to help Martha. „ Penny could ask other people outside the family to walk with Martha to the community centre, such as a neighbour. „ Penny could tell her mother to do a quiet activity in the afternoons such as watching television or listening to the radio. It is important to respect the daily routines of the person you care for and maintain them for as long as possible. When this is no longer possible, adapt the routine to the best of your ability so that the key activities that are important to the person with dementia are maintained for as long as possible. MODULE 4 Le ss on 5 . A n en jo ya bl e d ay 3. Check your understanding Maintaining activities and interests outside the house. Keep in Mind What is sundowning? Sometimes people with dementia become more agitated, aggressive or confused in the late afternoon or early evening. This is often referred to as ‘sundowning’. It can be particularly distressing for carers. The exact cause of sundowning is not yet clear but a loss of routine might be one of the reasons. Try to give the person something meaningful to do at this time of day. Let’s look at an example Martha likes to go to a community centre every day from 12:00 until 15:00. She has lunch there and meets friends to do activities together. At first Martha walks there by herself but as her memory loss becomes more severe, she cannot find her way to the centre anymore. Penny asks another family member to take Martha to the centre and bring her back home. This works well for a while but eventually the family member is unable to take Martha. Penny does not know what to do since she cannot be with Martha every afternoon. iS u p p o rt In te rv e n ti o n M an u al 158 At bedtime z For the morning, afternoon and bedtime, establish and maintain routines for as long as possible, but be prepared to adapt these as the abilities of the person living with dementia change over time. z Printing out a list of daily routines can help. Do one for each day and put it up in a prominent place. MODULE 4 Le ss on 5 . A n en jo ya bl e d ay What suggestions do you have for Penny? Please select the correct answer from the responses below. „ Penny could read to Martha for 15 minutes before she goes to sleep. „ Penny should take the books out of Martha’s room. „ Penny should get some books that have more pictures than words or audiotapes for Martha. 4. Check your understanding Adapting routines. Tip At night, Martha is used to reading quietly for about 30 minutes before she goes to sleep. As her dementia progresses, she finds that she is no longer able to read. Sometimes she is just staring at her book. She increasingly finds reading confusing. Penny wants to adapt this routine to fit Martha’s current abilities. iS u p p o rt In te rv e n ti o n M an u al 159 Do you know any of the routines of the person with dementia that you care for? Please write down any ideas that you have about routines for the person you care for and how they can be adapted. MODULE 4 Le ss on 5 . A n en jo ya bl e d ay 1. Activity iS u p p o rt In te rv e n ti o n M an u al 160 You finished this lesson, well done! MODULE 4 Le ss on 5 . A n en jo ya bl e d ay Let’s review what you have learned z Establishing routines is important for people living with dementia. z Try to keep routines similar to the ones your family member or friend had before developing dementia. z Be prepared to adapt routines as necessary as the abilities of the person living with dementia change over time. iS u p p o rt In te rv e n ti o n M an u al 161 iS u p p o rt In te rv e n ti o n M an u al 9 If Penny suggests keeping to the routine by drinking tea first, it is likely that Martha will go for a walk afterwards. Right! It will help Martha keep her routine. 9 ✓Penny should ask Martha what activities she is used to and in what order she would like to do them. Indeed! Penny can learn Martha’s routines. However, this may only work if Martha is in the early or middle stages of dementia. Later on, Martha might not be able to remember her routines. 8 Penny should force Martha to go for a walk because it was advised by the doctor. This response is not so good because it may make Martha feel agitated and upset. 1. Check your understanding Morning routines. ANSWERS - PROVIDING EVERYDAY CARE Lesson 5. An enjoyable day MODULE 4 AN SW ER S - P RO VI DI NG E VE RY DA Y CA RE • Le ss on 5 What suggestions do you have for Penny? iS u p p o rt In te rv e n ti o n M an u al 162 iS u p p o rt In te rv e n ti o n M an u al 8 ✗Penny should put away the baking and cooking pans and tell her mother that it’s just not possible to do this anymore. This is not very helpful. Penny has not tried to come up with an alternative to help her mother and it may make Martha feel upset. 9 Penny should go shopping with her mother and buy easy to prepare cakes and cookies, “out of the box”, with limited added work to enable Martha to continue to do some cooking and baking. This is a good suggestion. It respects Martha’s routine but adapts the activity to her current abilities. 9 As Martha’s abilities change, Penny could plan some time during the afternoon to bake and cook with her mother. This is an excellent plan for the future! It allows Martha to continue her routine with support as needed. MODULE 4 AN SW ER S - P RO VI DI NG E VE RY DA Y CA RE • Le ss on 5 2. Check your understanding Maintaining activities and interests during the day. What suggestions do you have for Penny? iS u p p o rt In te rv e n ti o n M an u al 163 iS u p p o rt In te rv e n ti o n M an u al 9 Penny could ask another family member to help Martha. This is a good idea. If others can come on a regular basis, this is the best solution for Martha as it maintains her routine and adapts to Martha’s changing abilities. 9 Penny could ask other people outside the family to walk with Martha to the community center such as a neighbour. This is a good response. Family is not always available and sometimes other people don’t know how they can help. This is a concrete way that Penny could ask for help. 8 Penny could tell her mother to do a quiet activity in the afternoons like watching television or listening to the radio. This is not likely to be a good solution at this time. It isolates Martha from other people and doesn’t allow her to engage in the activities that she enjoys. It might be a better solution in the later stages of dementia, when Martha’s abilities change. MODULE 4 AN SW ER S - P RO VI DI NG E VE RY DA Y CA RE • Le ss on 5 3. Check your understanding Maintaining activities and interests outside the house. What suggestions do you have for Penny? iS u p p o rt In te rv e n ti o n M an u al 164 iS u p p o rt In te rv e n ti o n M an u al 9 Penny could read to Martha for 15 minutes before she goes to sleep. This is a good idea. It helps Martha to continue enjoying reading but adapts the activity to her abilities. 8 Penny should take the books out of Martha’s room. This is not a good response because it does not recognise how important reading is to Martha. Penny should recognise that her mother and her can still share this routine; it just needs to be adapted. 9 Penny should get some books that have more pictures than words or audiotapes for Martha. This is a helpful adaption for people in the later stages of dementia who liked to read but find that they are not able to read books with a lot of words. 4. Check your understanding Adapting routines. MODULE 4 AN SW ER S - P RO VI DI NG E VE RY DA Y CA RE • Le ss on 5 What suggestions do you have for Penny? M od ul e 5 . D ea lin g wi th b eh av io ur ch an ge s DEALING WITH BEHAVIOUR CHANGES Lesson 1. Introduction to behaviour changes Lesson 2. Memory loss Lesson 3. Aggression Lesson 4. Depression, anxiety or apathy Lesson 5. Difficulty sleeping Lesson 6. Delusions and hallucinations Lesson 7. Repetitive behaviour Lesson 8. Walking and getting lost Lesson 9. Changes in judgement Lesson 10. Putting it all together 5 MODULE iS u p p o rt In te rv e n ti o n M an u al 166 MODULE 5 Why is this lesson important? Dementia changes the way that people behave, think or act. This can be distressing or upsetting not only for the person with dementia, but also for their families and carers, like you. How will this lesson help me? This lesson helps to improve your skills to prevent and cope with behaviour changes. What will I learn? 1. Behaviour changes that may be particularly stressful. 2. Understanding the cycle of behaviour change. 3. Different approaches to respond to behaviour changes. Lesson 1. Introduction to behaviour changes 1. Behaviour changes that may be particularly stressful Dementia changes the way people behave, think or act. This not only affects the person living with dementia, but can also be distressing and upsetting for carers, like you. ”Any behaviour that gets you or the person you care for upset is stressful.” In this introduction you will learn: z How you can identify behaviours that are potentially upsetting, stressful or difficult for you and the person you care for. z How you might handle behaviour changes. z How you might change circumstances to reduce or prevent behaviour changes. Le ss on 1 . I nt ro du ct io n to b eh av io ur ch an ge s iS u p p o rt In te rv e n ti o n M an u al 167 MODULE 5 Does the person you care for ever experience any of the following behaviour changes? Please select any that apply. Forgetting or losing things, not being able to recall recent events or remember dates and days of the week. Talking or acting in a threatening way, or doing things that make you feel frightened. Feeling sad, worried, frightened, frustrated or angry, being unusually emotional, crying, agitated or restless, withdrawn, unhappy, apathetic or reacting slowly. Restless at night, waking you or other family members up. Misinterpreting the world, having fixed false beliefs, things a person sees or hears that are not there, or becomes suspicious of those around them. „ Memory loss „ Aggression „ Depression, anxiety or apathy „ Difficulty sleeping „ Delusions and hallucinations: seeing or hearing things that are not there Behaviour changes Example 1. Activity Le ss on 1 . I nt ro du ct io n to b eh av io ur ch an ge s iS u p p o rt In te rv e n ti o n M an u al 168 MODULE 5 Repeating a question or an action over and over. Continuously walking around, leaving the house and getting lost. Saying the wrong thing at the wrong time, acting inappropriately in a situation, not understanding own limitations. None of these symptoms are present at this point in time. „ Repetitive behaviour: doing things over and over „ Wandering: walking around a lot „ Changes in judgement „ Not at this time Behaviour changes Example 1. Activity Many things can cause behaviour changes that are upsetting to you or the person you care for. This can have a bad effect on your relationship with the person you care for. It can even make you feel sad, angry, confused, or anxious. In some instances, you might even feel as though you can’t cope with the situation. In this lesson you will learn what you can do to reduce or prevent these situations. Remember Le ss on 1 . I nt ro du ct io n to b eh av io ur ch an ge s iS u p p o rt In te rv e n ti o n M an u al 169 MODULE 5 Understanding any behaviour change and what happens before and after the behaviour is very important. Sometimes you can reduce or even prevent certain behaviours. If you pay attention and understand what happens before or “triggers” the behaviour, this can help you to reduce or prevent the behaviour. Let’s look at the following example Kayla has dementia like the person you care for. Her husband Howard is taking care of her, like you are caring for your family member or friend. Howard often asks Kayla if she can remember who came to visit last week or what she had for dinner yesterday. Kayla cannot remember these things and gets agitated. As a result, Howard feels frustrated. 2.Understanding the cycle of behaviour change “Howard is asking Kayla questions” “Howard feels frustrated” What happens before? Carer’s response to the behaviour Behaviour “Kayla can’t answer the questions and gets agitated” Le ss on 1 . I nt ro du ct io n to b eh av io ur ch an ge s The diagram below shows what’s happening. iS u p p o rt In te rv e n ti o n M an u al 170 MODULE 5 What happens before the behaviour? What do you think happens before Kayla gets agitated that you might be able to change? Below are some examples. 1. Howard asks questions that Kayla cannot answer. 2. The tone of voice that Howard uses to ask these questions makes Kayla feel nervous. Now you try the next one. Please fill in your ideas on what comes before Kayla gets agitated in the box below. When you are done, check the answer section at the end of this lesson for more ideas. 1. Check your understanding Identifying what happens before the behaviour. Le ss on 1 . I nt ro du ct io n to b eh av io ur ch an ge s iS u p p o rt In te rv e n ti o n M an u al 171 MODULE 5 2. Check your understanding Different ways of responding to behaviour change. Now let’s look at Howard’s response So, what are we trying to do? We are trying to separate what comes before the behaviour and what the carer’s response is after the behaviour. How does Howard respond in this example? Howard gets frustrated because his wife Kayla forgot who came to visit and what she had for dinner. Howard can choose to change his response. Here are some responses, some are good, others are not. Please check what you think could be good responses. Howard could: „ Show that he is frustrated. „ Take a deep breath. „ Show his irritation by saying: “I already answered that, please stop bothering me”. „ Remind himself that his wife has dementia and cannot help that she forgets things. She is not forgetting on purpose. „ Next time, remember that asking her such questions will only cause frustration, not only for him, but also for his wife. „ Work with Kayla to record significant family and social events in a family diary. Le ss on 1 . I nt ro du ct io n to b eh av io ur ch an ge s iS u p p o rt In te rv e n ti o n M an u al 172 MODULE 5 3. Different approaches work at different times. What if Howard’s approach doesn’t work the first time? Different approaches work at different times, so Howard should not give up! Howard could try several approaches until he finds one that works. Here are some examples of what Howard could do: z He can ask other people’s advice, for example his health care provider. z He can also ask someone at the Alzheimer’s Association (a community based organisation that provides support for people with dementia and their carers) in his country: https://www.alz.co.uk/associations. z He can search for information on the internet. Le ss on 1 . I nt ro du ct io n to b eh av io ur ch an ge s iS u p p o rt In te rv e n ti o n M an u al 173 MODULE 5 Now think about your own situation It is important to apply what you have just learned to your own situation with the person you care for. Use the spaces below, like a diary. 2. Activity What could you do to change what happened before the behaviour in order to reduce or prevent it? What is the behaviour that was the most distressing or upsetting to you in the past month? How could you respond in that situation? Le ss on 1 . I nt ro du ct io n to b eh av io ur ch an ge s iS u p p o rt In te rv e n ti o n M an u al 174 MODULE 5 Let’s review what you have learned z People with dementia may experience behaviour changes that are distressing or upsetting to them or those around them. z It is helpful to identify what happens before the stressful behaviour to understand what might cause it or make it worse. z It is also helpful to identify how you usually respond, what you feel or what you do. z Take a deep breath and think about the best ways to respond that will be the least distressing to you and the person you care for. z Try different responses and approaches, as the first one does not always work. z Seek professional help if you cannot manage a situation. You finished this lesson, well done! Le ss on 1 . I nt ro du ct io n to b eh av io ur ch an ge s iS u p p o rt In te rv e n ti o n M an u al MODULE 5 175 iS u p p o rt In te rv e n ti o n M an u al z Kayla has dementia. Remembering who came to visit last week is difficult for her. z Kayla has dementia and cannot remember what she had for dinner. 1. Check your understanding Identifying what happens before the behaviour. ANSWERS- DEALING WITH BEHAVIOUR CHANGES Lesson 1. Introduction to behaviour changes AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 1 iS u p p o rt In te rv e n ti o n M an u al MODULE 5 176 iS u p p o rt In te rv e n ti o n M an u al AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 1 8 Show that he is frustrated. This is not the best response. Showing that he is frustrated is an inappropriate way to deal with the stressful behaviour, it may even make the person living with dementia irritable. 9 ✓Take a deep breath. This is a good response. It shows that Howard is trying to control his frustration. 8 Show his irritation by saying: “I already answered that, please stop bothering me”. This reaction is not so good, because Howard’s irritability may upset Kayla even more. 9 ✓Remind himself that his wife has dementia and cannot help that she forgets things. She is not forgetting on purpose. This is a good response, because Howard recognises that Kayla is living with dementia. 9 Next time, remember that asking her such questions will only cause frustration, not only for him, but also for his wife. This is a good response, because it may prevent this frustrating situation. 9 Work with Kayla to record significant family and social events in a family diary. This is a good response, because they can revisit the events from time to time if Kayla is missing family members and friends. 2. Check your understanding Different ways of responding to behaviour change. What are some of the ways that Howard could respond? iS u p p o rt In te rv e n ti o n M an u al MODULE 5 177 Why is this lesson important? Memory loss can be frustrating for the person living with dementia and the carer. How will this lesson help me? In this lesson you will practice several ways to respond to memory loss, and find out what may help you deal with the person’s increasing forgetfulness. What will I learn? 1. What is memory loss? 2. How to respond to memory loss? Lesson 2. Memory loss 1. What is memory loss? People with dementia will increasingly lose their memory over time. In the beginning, they may forget recent events, where they put their keys, their wallet or a particular piece of paper. They find it harder to remember phone numbers, important dates and appointments. However, past memories, such as childhood memories, are often preserved for a longer period of time. Le ss on 2 . M em or y l os s iS u p p o rt In te rv e n ti o n M an u al MODULE 5 178 1. What is memory loss? People with dementia will increasingly lose their memory over time. In the beginning, they may forget recent events, where they put their keys, their wallet or a particular piece of paper. They find it harder to remember phone numbers, important dates and appointments. However, past memories, like childhood memories, are often preserved for a longer period of time. Do s t e person you care for som times forget things? If so, what kinds of things do they forget? Please write them down. 1. Activity Le ss on 2 . M em or y l os s iS u p p o rt In te rv e n ti o n M an u al MODULE 5 179 How would you advise Maya to deal with her mother’s memory loss? Please check all the responses that you feel are appropriate from the list below. „ Ask a neighbour to go with Anne once a week to the market to buy groceries. „ Create a memory aid together with Anne, e.g. a list of groceries that Anne needs to buy, and put the list in a place where it can be seen, so that it is easy to access. „ Go out and buy groceries immediately. „ Ask: “Mom, what’s wrong with you, there is no food in the house”. „ Sit down with Anne and make a list of groceries. Go shopping together. 1. Check your understanding Forgetting to buy groceries. 2. How to respond to memory loss? In this lesson you can practice several ways to respond to memory loss, and find out what may help you deal with it. Let’s have a look at an example Anne is living with dementia. She has a daughter named Maya. They live very close to each other. When Maya goes to visit Anne’s house, she notices that the fridge or cupboard is empty. Anne often forgets what she usually buys from the market. The person you care for might also forget other things. The same goes for Anne. Le ss on 2 . M em or y l os s iS u p p o rt In te rv e n ti o n M an u al MODULE 5 180 What do you think Maya’s response should be? Please check all the responses that you feel are appropriate from the list below. „ Tell her mother what to do over the phone. „ Ask her mother what she usually does on that given day. For example, Monday is wash day; Thursday is going to the market day. „ Move in with her mother. „ Go straight over and take charge of the situation, by ordering her mother around. „ Plan to visit Anne every weekend and write out to-do lists for every day of the week. „ Hire someone to stay with her mother all the time. „ Ask her mother while on the phone to get a pencil and paper. Talk through the plan for the day together. 2. Check your understanding Forgetting daily activities. Let’s look at another example Maya and Anne are talking on the phone. Maya notices that Anne often forgets what she normally does during the day. Maya is impatient with Anne, and tells her mother, “this is getting worse”. Le ss on 2 . M em or y l os s iS u p p o rt In te rv e n ti o n M an u al MODULE 5 181 How do you think Maya should respond to this situation? Please check all the responses that you feel are appropriate from the list below. „ Maya puts notes near the clock when her mother needs to take a pill. „ Maya says, “Mom, how could you forget your medications?”, and “you know you really need them to stay healthy!” „ Maya goes through the medicine cabinet, sits down and cries about her mother’s memory loss. „ Maya goes over the medications with her mom. She purchases a pill box, and puts the pills in the box at the right day and time and calls her mom every day to instruct her to take her medications. 3. Check your understanding Forgetting medication. Sometimes memory loss can be more serious, like in the next example. Let’s look at an example Maya comes to visit and discovers that Anne is having trouble remembering which medications to take and at what time.Le ss on 2 . M em or y l os s iS u p p o rt In te rv e n ti o n M an u al MODULE 5 182 Let’s look at your own situation It is important to apply what you have learned to your own situation. How could you respond to help the person you care for deal with their memory loss? Write down some ideas. 2. Activity Le ss on 2 . M em or y l os s iS u p p o rt In te rv e n ti o n M an u al MODULE 5 183 z Memory loss is very common for people with dementia. z Memory loss can be stressful to deal with. z In case of memory loss, try a memory aid like a note, pill- box, reminder/alarm, etc. z If possible, involve the person you care for to find the best way to support them in case of memory problems. z It is important to remember that the person living with dementia is not to blame, because he/she can’t help that they forget. z When one approach doesn’t work, try another one. z Realize there may be good and bad days. z Remind yourself that memory loss is part of the disease. z Take a deep breath and think about the best ways to respond that will be the least distressing to you and the person you care for in the case of memory loss. You finished this lesson, well done! Let’s review what you have learned Le ss on 2 . M em or y l os s iS u p p o rt In te rv e n ti o n M an u al MODULE 5 184 iS u p p o rt In te rv e n ti o n M an u al Relaxation exercise - Neck movements ANSWERS - DEALING WITH BEHAVIOUR CHANGES Lesson 2. Memory loss 9 Ask a neighbour to go with Anne once a week to the market to buy groceries. This might be helpful. Anne will have groceries and a nice visit with the neighbour. 9 ✓Create a memory aid together with Anne, e.g. a list of groceries that Anne needs to buy, and put it in a prominent place, so that the list is easy to access. This is a good response. It addresses Anne’s memory loss and may become a weekly shared pleasant activity. 8 Go out and buy groceries immediately. This answer is not so good because it is a panic reaction and a one-time solution. It does not solve the problem at hand. 8 Ask: “Mom, what’s wrong with you, there is no food in the house”. This answer is not so good because Anne cannot help that she forgets to buy food and may feel embarrassed that she has done something wrong. It does not improve the situation. 9 Sit down with Anne and make a list of groceries. Go shopping together. This answer may be a good one because Maya is addressing her mother’s needs. However, she might first want to try another approach. For example, with a list of groceries that her mother may still be able to go shopping without help. 1. Check your understanding Forgetting to buy groceries. AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 2 What would you advise Maya? iS u p p o rt In te rv e n ti o n M an u al MODULE 5 185 iS u p p o rt In te rv e n ti o n M an u al Relaxation exercise - Neck movements 8 Tell her mother what to do over the phone. This response is not so good because her mother may not understand or be able to follow a phone conversation. 9 Ask her mother what she usually does on that given day. For example, Monday is wash day; Thursday is going to the market day. This response may be a good one because Maya can use this information to remind her mother. 8 Move in with her mother. This is not the right response. There are several other less drastic approaches that Maya has not yet tried. 8 Go straight over and take charge of the situation, by ordering her mother around. This response is not so good because it is a one-time solution and does not solve the problem at hand. 9 Plan to visit Anne every weekend and write out to-do lists for every day of the week. This is a good response because it may help her mother to remember. 8 Hire someone to stay with mother all the time. This is not the right response. There are several less drastic approaches that Maya has not tried yet. 9 Ask her mother while on the phone to get a pencil and paper. Talk through the plan for the day together. This is a good response because it may help her mother to remember. Maya could call her mother every morning at a certain time, and ask her to get a pencil and paper and to plan her day together. 2. Check your understanding Forgetting daily activities. What do you think Maya’s response should be? AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 2 iS u p p o rt In te rv e n ti o n M an u al MODULE 5 186 iS u p p o rt In te rv e n ti o n M an u al Relaxation exercise - Neck movements 9 Maya puts notes near the clock when her mother needs to take a pill. This may be good to do because a memory aid could help Anne remember to take her pills. 8 Maya says, “Mom, how could you forget your medications?”, and “You know you really need them to stay healthy!” This response is not helpful because Anne cannot help that she forgets to take her medications. Memory loss is part of her disease. 8 Maya goes through the medicine cabinet, sits down and cries about her mother’s memory loss. This is not the way to deal with her mother’s memory loss. Getting upset will not solve her mother’s problem of forgetting to take medications. 9 Maya goes over the medications with her mom. She purchases a pill box, and puts the pills in the box at the right day and time and calls her mom every day to instruct her to take her medications. This is a good response because this memory aid might help Anne to take medications at the right day and time. Some pill reminder boxes come with alarms that are pre-set to remind the person to independently take their medications. 3. Check your understanding Forgetting medication. How should Maya respond? AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 2 iS u p p o rt In te rv e n ti o n M an u al MODULE 5 187 Why is this lesson important? From time to time, people with dementia may become angry, aggressive or violent. This is often one of the most difficult things to cope with for carers. How will this lesson help me? This lesson helps to understand possible causes of aggression and improve your skills to prevent or deal with aggression. What will I learn? 1. Why does aggression happen? 2. How to respond to aggressive behaviour? 3. How to deal with ongoing aggression? Lesson 3. Aggression 1. Why does aggression happen? From time to time, people with dementia may become angry, aggressive or violent. Aggression can happen for a variety of reasons. It can be due to unmet needs, illness such as a urinary tract infection, medication combinations or side effects, or something that is happening around the person with dementia. In addition, people with dementia may have difficulty understanding others, judging social situations, controlling their feelings or expressing themselves like they did before. They may also have personality or mental health changes that contribute to aggressive behaviours. At times, aggression is displayed towards people known to the person living with dementia. At other times it can be with strangers. Aggression is often one of the most difficult things to cope with for carers. Le ss on 3 . A gg re ss io n iS u p p o rt In te rv e n ti o n M an u al MODULE 5 188 Let’s look at your situation Check your answer, yes or no. Does the person you care for ever talk to you or other people in an aggressive way? „ Yes „ No Does the person you care for ever act aggressively towards you or other people? „ Yes „ No 1. Activity WARNING! If the person is suddenly behaving aggressively, there may be an underlying cause (for example a urinary infection) that should be investigated by a doctor. Le ss on 3 . A gg re ss io n iS u p p o rt In te rv e n ti o n M an u al MODULE 5 189 Do you remember the cycle of behaviour change? Just like we mentioned in Lesson 1. Introduction to behaviour changes, it is important to break down the cycle of stressful responses into three parts in order to help you deal with them. What happens before? Carer’s response to the behaviour Behaviour Here they are Le ss on 3 . A gg re ss io n iS u p p o rt In te rv e n ti o n M an u al MODULE 5 190 Neil wants to assist his father-in-law, Amit, in taking a bath because Amit needs to see a doctor. Neil says: “it is time for your bath”. Amit refuses. Neil has little time and tugs on his father-in-law’s arm. He says: “you need to bathe because you’re going to see the doctor.” Amit pulls his arm back and resists. He is much stronger than Neil. Neil tugs it again and says angrily: “you must take a bath because you are going to the doctor and need to be clean”. Amit gets very angry, shouts and even tries to shove Neil, who becomes upset. Amit angrily refuses to take a bath Can you break down the cycle of behaviour change in this example into its three parts? Please fill in the boxes below. What comes before the behaviour? What is the stressful behaviour? What is Neil’s response? 1. Check your understanding Understanding aggressive behaviour. Let’s see how the cycle works with a different example. Le ss on 3 . A gg re ss io n iS u p p o rt In te rv e n ti o n M an u al MODULE 5 191 „ Force his father-in-law to start bathing anyway. „ Maintain the dignity and privacy of his father-in-law. He could keep him in a robe or towel until he actually takes a bath. „ Play soothing music that Amit likes. „ Walk away and come back later. „ Explain logically why he should bathe. „ Put himself in Amit’s shoes and try to understand why Amit might not want to take a bath. 2. Check your understanding Responding to aggressive behaviour. 2. How to respond to aggressive behaviour? There are many ways to respond to aggressive behaviour. Some are good, others are not. In the exercise below you can learn more. How could Neil react differently? Please indicate what you think are good responses. Neil could: Le ss on 3 . A gg re ss io n iS u p p o rt In te rv e n ti o n M an u al MODULE 5 192 „ Make sure that there is enough time so that it is not so stressful. Rather than trying to bathe Amit right before the doctor’s appointment, when things are rushed, Neil might try to assist with bathing the day before. „ Before the next bath time, identify the best time of day for Amit to take a bath and find out whether he prefers a bath or a shower. „ When bathing Amit, keep a towel over his shoulders to help him maintain dignity and to keep him warm. „ Ask for someone else to help with Amit’s bath time. „ Help Amit with a bed bath by using warm, wet towels with soap without taking Amit to the bath. „ Say in an irritated voice: “I have already answered that, please stop bothering me.” “You must take a bath!” 2. Check your understanding (continued) Responding to aggressive behaviour. Le ss on 3 . A gg re ss io n iS u p p o rt In te rv e n ti o n M an u al MODULE 5 193 What could Neil do if his approach does not work the first time? Check all that apply. „ Neil could try several approaches until he finds one that works. „ Neil could get suggestions from others. 3. Check your understanding Ongoing aggressive behaviour. 3. How to deal with ongoing aggression? Sometimes your first approach may not work. Don't get discouraged, different responses may work at different times. Take a deep breath and think about the most positive ways to respond that will be the least distressing to you and the person you care for. Remind yourself that aggression can be a part of the dementia, or a reaction to the disease. Reminder Different responses may work at different times. Le ss on 3 . A gg re ss io n iS u p p o rt In te rv e n ti o n M an u al MODULE 5 194 Let’s look at your own situation It is important to apply what you have just learned to your own situation. Has the person that you care for ever been aggressive towards you? If so, describe the last time that this happened in the spaces below. 2. Activity What happened before the person you care for became aggressive? What could you do to change your response to this behaviour? What could change in the environment to make it more calming? Le ss on 3 . A gg re ss io n iS u p p o rt In te rv e n ti o n M an u al MODULE 5 195 z Aggression like shouting, shoving or pushing can happen to carers of people with dementia. z Aggression can be very upsetting for the person living with dementia as well as the carer. z Try to change the environment to make it more calming. z Try to maintain the dignity of the person living with dementia; do not force them to engage in activities that they do not wish to do. z If one approach does not work, try another one. z Realize that there may be worse, but also better moments. z Remind yourself that aggression can be a part of the dementia, or a reaction to the disease. z If the person is suddenly behaving aggressively, there may be an underlying cause (for example a urinary infection) that should be investigated by a doctor. z Take a deep breath and think about the most positive ways to respond that will be the least distressing to you and the person you care for. z If the person you care for continues to show aggression, there are many resources available on the internet. For example, look at the website of the Alzheimer Association in your country (www.alz.co.uk/associations). You finished this lesson, well done! Let’s review what you have learned Le ss on 3 . A gg re ss io n iS u p p o rt In te rv e n ti o n M an u al MODULE 5 196 iS u p p o rt In te rv e n ti o n M an u al Relaxation exercise - Neck movements ANSWERS - DEALING WITH BEHAVIOUR CHANGES Lesson 3. Aggression AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 3 Amit angrily refuses to take a bath Can you break down the cycle of behaviour change in this example into its three parts? Please fill in the boxes below. What comes before the behaviour? Neil tugs Amit’s arm and says angrily: “you must take a bath because you are going to the doctor and need to be clean”. Amit gets very upset and shouts and even tries to shove Neil. Neil becomes upset. What is the stressful behaviour? What is Neil’s response? 1. Check your understanding Understanding aggressive behaviour. iS u p p o rt In te rv e n ti o n M an u al MODULE 5 197 iS u p p o rt In te rv e n ti o n M an u al Relaxation exercise - Neck movements AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 3 8 Force his father-in-law to start bathing anyway. This is not helpful, because it does not change the situation and may only make it worse. 9 Maintain the dignity and privacy of his father-in-law. He could keep him in a robe or towel until he actually takes a bath. Correct. Maintaining dignity and privacy is always a good idea when caring for someone with dementia. By doing this Neil makes sure that the person living with dementia is comfortable. 9 Play soothing music that Amit likes. Yes. Though it may take extra time to arrange the music, this option may help sooth both Neil and Amit. This may create relaxation and less negative responses from both of them. 9 Walk away and come back later. This is a good response. It gives Neil time to calm down, take a deep breath and come up with a new strategy. It also gives Amit time to forget about the negative encounter and he may be in a better mood if approached differently later. 8 Explain logically why he should bathe. This answer is not so good. It does not take into account that Amit may not be able to understand because of his dementia. 2. Check your understanding Responding to aggressive behaviour. How could Neil react differently? Neil could: iS u p p o rt In te rv e n ti o n M an u al MODULE 5 198 iS u p p o rt In te rv e n ti o n M an u al Relaxation exercise - Neck movements AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 3 9 Make sure that there is enough time so that it is not so stressful. Rather than trying to bathe Amit right before the doctor’s appointment, when things are rushed, Neil might try to assist with bathing the day before. Though taking more time may not always be feasible, this option is good. It may reduce tension for Neil and Amit. 9 Before the next bath time, identify the best time of day for Amit to take a bath and find out whether he prefers a bath or shower. This answer is good. Keeping people with dementia to their regular routines shows attention to their preferences. 9 When bathing Amit, keep a towel over his shoulders to help him maintain dignity and to help keep him warm. This answer is good. Amit could be embarrassed to be naked in front of his son-in-law or the temperature of the water or the room could be too cold. It’s important to look for ways to make the situation more pleasant. 9 ✓Neil could ask for someone else to help with Amit’s bath time. This answer is good. Sometimes the person living with dementia is more comfortable with one family member helping them bathe than another. Sometimes even a stranger might find it easier as the person living with dementia might be less embarrassed than with a family member. 2. Check your understanding (continued) Responding to aggressive behaviour. iS u p p o rt In te rv e n ti o n M an u al MODULE 5 199 iS u p p o rt In te rv e n ti o n M an u al Relaxation exercise - Neck movements AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 3 9 Neil could help Amit with a bed bath by using warm, wet towels with soap without taking Amit to the bath. This answer is good. If the person living with dementia is afraid of the bath, or running water, this option will help relieve their distress and can sometimes be used instead of baths. There are also products such as dry shampoo and cleaning products used for young children that might help. 8 Say in an irritated voice: “I have already answered that, please stop bothering me.” “You must take a bath!” This is not helpful, because it does not change the situation. 2. Check your understanding (continued) Responding to aggressive behaviour. iS u p p o rt In te rv e n ti o n M an u al MODULE 5 200 iS u p p o rt In te rv e n ti o n M an u al Relaxation exercise - Neck movements AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 3 What could Neil do if his approach does not work the first time? 9 Neil could try several approaches until he finds one that works. 9 Neil could get suggestions from others. There may be other approaches that you could try. This can be information from people that you know or that is available on the Internet. See for example: http://www.alz.co.uk/ 3. Check your understanding Ongoing aggressive behaviour. iS u p p o rt In te rv e n ti o n M an u al MODULE 5 201 Why is this lesson important? Dementia may affect a person’s mood and interest in daily activities, people and events. How will this lesson help me? This lesson helps you to understand the possible causes of depression and anxiety, while improving your skills to prevent or reduce mood problems. What will I learn? 1. What are depression, anxiety and apathy? 2. How to respond when a person living with dementia is feeling depressed or anxious? 3. How to respond when a person living with dementia loses interest in daily activities? Lesson 4. Depression, anxiety and apathy 1. What are depression, anxiety and apathy? Depression, anxiety and apathy are common among people with dementia. Dementia may affect a person’s mood and interest in daily activities, people and events. This may be due to changes in the brain, but also to the emotional reaction of what is happening to them. People with dementia may feel sad, worried, frightened, frustrated or angry, may cry and be unusually emotional, agitated or restless. They may also be withdrawn, unhappy and react slowly. These are all behaviours of depression and apathy. Anxiety can lead to behaviours similar to depression. People with dementia can be worried about being left alone, who is handling their money, or where lost items have gone to and become anxious. Le ss on 4 . D ep re ss io n, an xie ty an d ap at hy iS u p p o rt In te rv e n ti o n M an u al MODULE 5 202 2. How to respond when a person living with dementia is feeling depressed or anxious? Let’s look at an example Juan has dementia and lives with his sister, Isabel. On several occasions Isabel has found Juan sitting in his favourite chair looking very sad, hunched over, and sometimes crying. Isabel tries to cheer him up. Unfortunately, everything that she tries does not seem to work. How should Isabel handle this situation? Below are some things that Isabel may do or say. Please select all responses that you think might work. „ Walk over to Juan and say in a calm, reassuring tone, “I have some ideas about how you can feel better, let’s talk. „ Say: “Juan, what’s the matter with you? I’m tired of seeing you like this. Just get up and do something.” „ Say: “men don’t cry and get sad, we used to have so much fun together.” „ Go over and touch Juan on the arm or shoulder. “I know that you feel bad, I do too. What we’re going through is really hard.” „ Sit with Juan and suggest that they do a pleasant activity together. „ Sigh and walk away, thinking that there is nothing that she can do. 1. Check your understanding Responding to a person with dementia who is feeling depressed. Le ss on 4 . D ep re ss io n, an xie ty an d ap at hy iS u p p o rt In te rv e n ti o n M an u al MODULE 5 203 Here is another example Emma has dementia and lives with her family. Benjamin is her grandson. Because Benjamin’s parents work and he is in school, he is the main carer in the afternoons. Benjamin is watching a TV show while his grandmother is sewing. The TV show has loud music and vulgar language. Suddenly, his grandmother jumps up and paces up and down the room, wringing her hands. She is muttering to herself “I need to go home”, “I need to go home”. How do you think that Benjamin should respond to this situation? Below are some things that Benjamin may do or say. Please select all the correct responses. „ Think “Grandmother cannot help the way that she behaves.” „ Say “Grandmother! Sit down, you’re making it impossible for me to watch my show.” „ Give his grandmother a smile and reassure her that she is safe. „ Ask his grandmother to help him with something. „ Turn up the volume to drown out the muttering and turn away from her. „ Look for his headphones and encourage his grandmother to go back to her sewing so that she is busy. 2. Check your understanding Responding to a person with dementia who is feeling anxious. Le ss on 4 . D ep re ss io n, an xie ty an d ap at hy iS u p p o rt In te rv e n ti o n M an u al MODULE 5 204 „ Sofia walks over to George and says “I’m sick and tired of this laziness, get up and let’s go". „ Sofia goes over to George and strokes his hair. She says that she loves him and that she would like to do something together. George turns to her and smiles weakly. „ Sofia says: “you never do anything I want anymore, it is impossible to keep on living with you. I don’t know what I’m going to do.” „ Sofia says: “let’s go for a walk together, I know how much you would enjoy getting out of the house for a little while.” „ Sofia closes the door and doesn’t try to engage with George anymore. „ Sofia thinks back to what George used to really like doing and thinks how she could help, for example by reading the newspaper to him, cooking his favourite dish or visiting a shop to let him straighten the shelves with the shopkeeper’s permission. 3. Check your understanding Responding to a person with dementia who loses interest in daily activities. 3. How to respond when a person living with dementia loses interest in daily activities? Let’s look at an example George has dementia and lives with his wife Sofia. George used to be a shopkeeper and was very active in the community. Recently, George has been sitting in a chair near a large window and staring blankly outside, this type of behaviour can also be known as apathy where the person with dementia has trouble becoming interested in doing something. Sofia has become very concerned, because this is not like him. He seems removed and distant from her. One day, she walks in and says “George, shall we go out for a walk?” He does not respond. How do you think Sofia should react? Please check all the responses that you think are appropriate. Le ss on 4 . D ep re ss io n, an xie ty an d ap at hy iS u p p o rt In te rv e n ti o n M an u al MODULE 5 205 Let’s look at your own situation It is important to apply what you have learned to your own situation. The spaces below are for you, like a diary. Does the person living with dementia ever show changes in mood or interest, or any signs of depression or anxiety? If so, what do these changes look like? What could you do to prevent this? How could you respond in a different way? 1. Activity Le ss on 4 . D ep re ss io n, an xie ty an d ap at hy iS u p p o rt In te rv e n ti o n M an u al MODULE 5 206 z Signs of depression and anxiety are common in people with dementia. z Changes in mood can be very upsetting to the person living with dementia and the carer. z People with mood problems need extra love and support. z It is important to identify ways to stop or reduce mood changes, by comforting and getting the person interested in things that they like to do. z If one approach doesn’t work, try another one. z In case of mood changes, remind yourself that they may be part of the disease or a reaction to the disease. z Take a deep breath and think about the best ways to respond that will be the least distressing to you and the person you care for in case they have mood problems or experience a loss of interest. Let’s review what you have learned It is important to recognize when things get serious. If the person you care for has serious and constant mood changes or you think that they are in danger of harming themselves, it is important to seek medical advice right away. Remember You finished this lesson, well done! Le ss on 4 . D ep re ss io n, an xie ty an d ap at hy iS u p p o rt In te rv e n ti o n M an u al MODULE 5 207 iS u p p o rt In te rv e n ti o n M an u al ANSWERS - DEALING WITH BEHAVIOUR CHANGES Lesson 4. Depression, anxiety and apathy AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 4 9 Walk over to Juan and say in a calm, reassuring tone, “I have some ideas for how you can feel better, let’s talk. This is a good response because Juan needs more support due to the changes in his mood. 8 Say: “Juan, what’s the matter with you? I’m tired of seeing you like this. Just get up and do something.” This response is not helpful because Juan cannot help that he is feeling sad. 8 Say: “men don’t cry and get sad, we used to have so much fun together.” This response is not good because it might embarrass Juan and may make him feel even more sad. Below are some things that Isabel may do or say. Please select all responses that you think might work. 9 Go over and touch Juan on the arm or shoulder. “I know that you feel bad, I do too. What we’re going through is really hard.” This is a good response because people who are feeling sad need extra love, support and understanding. 9 Sit with Juan and suggest that they do a pleasant activity together. This is a good response because it may distract Juan and make him feel better. 8 Sigh and walk away, thinking thinking that there is nothing that she can do. This is not helpful because Isabel is further isolating Juan. 1. Check your understanding Responding to a person with dementia who is feeling depressed. iS u p p o rt In te rv e n ti o n M an u al MODULE 5 208 iS u p p o rt In te rv e n ti o n M an u al AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 4 9 Think “Grandmother cannot help the way that she behaves.” This is a good response because it recognizes that Emma’s reaction might be due to changes in her brain. 8 Say “Grandmother! Sit down, you’re making it impossible for me to watch my show.” This response is not good because a direct order like this may make Emma feel even more anxious. 9 Give his grandmother a smile and reassure her that she is safe. This is a good response because people who are feeling anxious need extra love and support. Below are some things that Benjamin may do or say. Please select all the correct responses. 9 Ask his grandmother to help him with something. This might help because it might distract Emma and change her reaction. 8 Turn up the volume to drown out the muttering and turn away from her. This is not a good response. It will only increase his grandmother’s anxiety. 9 Look for his headphones and encourage his grandmother to go back to her sewing so that she is busy. This is a good response. Benjamin can still watch TV with headphones so it is not too loud for Emma, and Emma might be able to engage in her sewing again. 2. Check your understanding Responding to a person with dementia who is feeling anxious. iS u p p o rt In te rv e n ti o n M an u al MODULE 5 209 iS u p p o rt In te rv e n ti o n M an u al AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 4 8 Sofia walks over to George and says “I’m sick and tired of this laziness, get up and let’s go”. This response is not good because a direct order may make George more withdrawn. It doesn’t show any understanding of his dementia. 9 Sofia goes over to George and strokes his hair. She says that she loves him and that she would like to do something together. George turns to her and smiles weakly. This is a good response because it recognizes that the problem is related to his dementia. She is not taking it personally and is expressing extra love and support. 9 Sofia says: “you never do anything I want anymore, it is impossible to keep on living with you. I don’t know what I’m going to do.” This is not a good response because it shows that she is giving up on George. He may become even more withdrawn from her. How do you think Sofia should react? Please check all the responses that you think are appropriate. 9 Sofia says: “let’s go for a walk together, I know how much you would enjoy getting out of the house for a little while.” This is a good response because it is reassuring and may comfort George. 8 Sofia closes the door and doesn’t try to engage with George anymore. This is not the right response because it may worsen George's loss of interest. 9 Sofia thinks back to what George used to really like doing and thinks how she could help, for example by reading the newspaper to him, cooking his favourite dish or visiting a shop to let him straighten the shelves with the shopkeeper’s permission. This is a good response because it shows Sofia cares about George and wants to help him engage in an activity that he would enjoy. 3. Check your understanding Responding to a person with dementia who loses interest in daily activities. iS u p p o rt In te rv e n ti o n M an u al MODULE 5 210 Why is this lesson important? People with dementia may have difficulty sleeping which can impact the carer’s sleep as well. How will this lesson help me? This lesson will provide examples and practice to promote good sleep. What will I learn? 1. How to deal with sleeping problems in a person with dementia? 2. How to deal with a person with dementia who wakes up in the middle of the night? Lesson 5. Difficulty sleeping 1. How to deal with sleeping problems in a person with dementia? Difficulty sleeping can be a problem for people with dementia and their families. People with dementia can have difficulty falling asleep, may wake up in the middle of the night, or wake up too early in the morning. Carers may have their sleep disrupted as a result, which can make it harder to provide care. In this lesson, you will practice how to promote good sleep for the person living with dementia. Le ss on 5 . D iffi cu lty s le ep in g iS u p p o rt In te rv e n ti o n M an u al MODULE 5 211 What is the main sleeping problems of the person that you care for? Please select all that apply. „ Difficulty falling asleep „ Waking up in the middle of the night „ Combination of the above „ Other (please specify): „ No problems at this point 1. Activity Le ss on 5 . D iffi cu lty s le ep in g iS u p p o rt In te rv e n ti o n M an u al MODULE 5 212 Can you break down the cycle of behaviour change in this example into its three parts? What comes before the behaviour? What is the stressful behaviour? What does this mean for Grace? 1. Check your understanding Understanding sleeping difficulties. Difficulty falling asleep Rosie is an older woman with dementia. She lives with her family. She sleeps near her granddaughter, Grace. Usually, the family has dinner around 6pm. The family is used to doing some activities together afterwards. Rosie does not always like these activities so the family often wants her to go to bed as early as 8pm. Granddaughter Grace notices that Rosie has trouble falling asleep. Rosie continues to open and shut her dresser drawers noisily during the evening. When Grace goes to bed, the noise Rosie is making keeps Grace awake. Le ss on 5 . D iffi cu lty s le ep in g iS u p p o rt In te rv e n ti o n M an u al MODULE 5 213 Here are some examples of what Grace could do. Please select all that you think may be appropriate to help Rosie fall asleep: „ Go for a walk with Rosie and add more physical activity during the day. „ Give her a pill to sleep. „ Try and ensure that Rosie does not drink coffee or too much fluid a few hours before going to bed. „ Make lunch the bigger meal of the day. „ Limit daytime naps to 15 to 30 minutes. „ Play soothing music before bedtime to help Rosie sleep. „ Create a bedtime routine, like lowering the lights, washing face and teeth, and changing into pajamas. „ Keep in mind that some people may require less sleep. Generally, 6 to 8 hours sleep from 20:00 means night waking between 2:00 to 4:00 in the morning. 2. Check your understanding Responding to sleeping difficulties. So far, we have covered some basic steps to help the person with dementia fall asleep. What if the problems are a bit more complex? Le ss on 5 . D iffi cu lty s le ep in g iS u p p o rt In te rv e n ti o n M an u al MODULE 5 214 What can Geeta do to keep Vani from wandering at 3:00 in the morning? Please select all responses that you feel are appropriate. „ Try to understand what will help Vani sleep. Some people prefer to keep the room dark with no television or as little noise as possible while others prefer a night light, soft music or a television playing. „ Give Vani a favourite object to relax (e.g. blanket or stuffed animal). „ Schedule an appointment with the doctor to find out if there is a medical reason for her trouble sleeping (e.g. urinary tract infection, pain, medication causing hallucinations). „ Develop an activity schedule to keep Vani awake and busy during the day. „ Encourage physical exercise during the day (e.g. walking, stretching). „ Tell Vani that you won’t take care of her anymore if you are continuously woken up at night. „ Ask if she has to go to the bathroom or is hungry or thirsty. If she says “yes”, then just assist her to meet these needs. „ Physically take hold of her and put her back in bed. „ Ask for help from a family member, friend or a paid professional. 3. Check your understanding Dealing with waking in the middle of the night (1). 2. How to deal with a person with dementia who wakes up in the middle of the night? Let’s look at another example It is 3:00 in the morning, Vani wakes up and starts walking around the house. Her daughter-in-law, Geeta, is sleeping. Vani paces throughout the house and then goes to Geeta and wakes her up. Vani asks: “Where are we? I want to go home”. Geeta is upset, because she has a long day at work tomorrow. Geeta says: “mother, you need to go back to bed, it is 3:00 in the morning.” Vani says: “I am not sleepy.” Geeta yells: “I can’t take this anymore.” Le ss on 5 . D iffi cu lty s le ep in g iS u p p o rt In te rv e n ti o n M an u al MODULE 5 215 Which of the responses below would you choose if the person you care for experiences sleeping problems? Please select all responses that you feel are appropriate. „ Remind yourself to stay calm and focus on getting the person living with dementia to sleep. This way, you will use your energy to solve the sleeping problem, rather than reacting emotionally. „ Gently remind the person that it is dark outside and it is time to sleep. If needed try to relax the person, for example by playing soothing music. „ Read aloud to the person you care for. Choose something that you know has a calming effect, perhaps a poem or story. Sing a song or chant together. Another option is to pray or meditate for 15 minutes together. „ Comfort the person living with dementia. Give them a stuffed animal and hug or hold them until they fall asleep. 4. Check your understanding Dealing with waking in the middle of the night (2). In the previous exercise, you identified several ways of dealing with waking in the middle of the night. Now let's look at your own situation and some additional responses. Sleeping problems may be related to depression. If the person you care for has difficulty sleeping, you might want to read Lesson 4 Depression, anxiety or apathy. Please also seek advice from a doctor. Tip Le ss on 5 . D iffi cu lty s le ep in g iS u p p o rt In te rv e n ti o n M an u al MODULE 5 216 Let’s look at your own situation In an earlier Activity on page 211, you identified the main sleeping problem of the person you care for. It is important to apply what you have learned to your own situation. The space below is for you, like a diary. What could you do to help tackle the sleeping problems? What could you do to improve your reaction to sleeping problems? 2. Activity Le ss on 5 . D iffi cu lty s le ep in g iS u p p o rt In te rv e n ti o n M an u al MODULE 5 217 z Difficulty sleeping is common in people with dementia. z Sleeping problems can be very stressful to deal with. z If the person you care for is having difficulty sleeping, try to make them more comfortable. z Try to identify circumstances that may increase difficulty sleeping and change or address them. z When one approach doesn’t work, try another one. z Realize that there will be good and bad days. z Remind yourself that difficulty sleeping is part of the disease. z Take a deep breath and think about the best ways to respond that will be the least distressing for you and the person you care for in case of sleeping problems. z Ask for help. It is hard to provide good care on limited sleep. Let’s review what you have learned You finished this lesson, well done! Le ss on 5 . D iffi cu lty s le ep in g iS u p p o rt In te rv e n ti o n M an u al MODULE 5 218 iS u p p o rt In te rv e n ti o n M an u al Can you break down the cycle of behaviour change in this example into its three parts? What comes before the behaviour? Rosie is sent to bed as early as 20:00, so that the family can do activities together that Rosie does not like. Rosie has trouble falling asleep and continues to open and shut her dresser drawers noisily during the evening. This keeps Grace awake. What is the stressful behaviour? What does this mean for Grace? 1. Check your understanding Understanding sleeping difficulties. ANSWERS - DEALING WITH BEHAVIOUR CHANGES Lesson 5. Difficulty sleeping AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 5 iS u p p o rt In te rv e n ti o n M an u al MODULE 5 219 iS u p p o rt In te rv e n ti o n M an u al 9 ✓Go for a walk with Rosie and add more physical activity during the day. This is a good idea! Physical exercise during the day may help sleep at night. 8 Give her a pill to sleep. This is not a good idea. It can make someone with dementia even more confused or agitated and sleeping pills may become addictive. 9 Try to ensure that Rosie does not drink coffee or too much fluid a few hours before going to bed. This is a good response. Coffee, tea, or too much liquid can keep people awake, and cause frequent urination. 9 Make lunch the bigger meal of the day. This is helpful. A light dinner makes it easier to sleep. Rosie has trouble falling asleep 9 Limit daytime naps to 15 to 30 minutes. This might be a good idea. It addresses the need for sleep during the day, but it does not prevent Rosie from falling asleep later on. 9 Play soothing music before bedtime to help Rosie sleep. Good idea. Find relaxing activities before bed such as music, or reading to Rosie. Too much activity before bed can cause a person to be stimulated and stay awake. 9 Create a bedtime routine, like lowering the lights, washing face and teeth, and changing into pajamas. This is a good response because a routine will relax the person living with dementia. 9 Keep in mind that some people may require less sleep. Generally, 6 to 8 hours sleep from 20:00 means night waking between 2:00 to 4:00 in the morning. This is a good response. Select a normal sleeping time as much as possible. 2. Check your understanding Responding to sleeping difficulties. AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 5 iS u p p o rt In te rv e n ti o n M an u al MODULE 5 220 iS u p p o rt In te rv e n ti o n M an u al 9 Try to understand what will help Vani sleep. Some people prefer to keep the room dark with no television or as little noise as possible while others prefer a night light, soft music or a television playing. This answer is a good one. Each person is different and you may need to try several possible solutions before finding one that works. 9 Give Vani a favourite object to relax (e.g. blanket or stuffed animal). This response is a good one. It may help Vani feel relaxed and secure. What can Geeta do to keep Vani from wandering at 3:00 in the morning? 9 Schedule an appointment with the doctor to find out if there is a medical reason for her trouble sleeping (e.g. urinary tract infection, pain, medication causing hallucinations). While it is not necessary to seek medical attention every time that a person living with dementia can’t sleep, seek advice if it worries or upsets you or the person living with dementia. 9 Develop an activity schedule to keep Vani awake and busy during the day. This is a good idea. It may improve sleep at night. 3. Check your understanding Dealing with waking in the middle of the night (1). AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 5 iS u p p o rt In te rv e n ti o n M an u al MODULE 5 221 iS u p p o rt In te rv e n ti o n M an u al 9 Encourage physical exercise during the day (e.g. walking, stretching). This may be helpful to improve sleep at night. 8 Tell Vani that you won’t take care of her anymore if you are continuously woken up at night. This is not a good response. Keep in mind that dementia is a disease and someone with dementia will be dependent on the care that others provide. 9 Ask if Vani has to go to the bathroom or is hungry or thirsty. If she says “yes”, then just assist her to meet these needs. This is helpful. Such a break might help the person go back to sleep. 8 Physically take hold of Vani and put her back in bed. Never do this. Although it may be very difficult to deal with sleeping problems, respect the dignity of someone with dementia. Moreover, they may become agitated or angry. It definitely will not solve the sleeping problems. 9 Ask for help from a family member, friend or a paid professional. This might be helpful. Eventually, the lack of sleep can affect any family’s ability to provide care. Someone else can assist by giving the family member a night or a weekend off. AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 5 3. Check your understanding (continued) Dealing with waking in the middle of the night (1). iS u p p o rt In te rv e n ti o n M an u al MODULE 5 222 iS u p p o rt In te rv e n ti o n M an u al 9 Remind yourself to stay calm and focus on getting the person living with dementia to sleep. This way, you will use your energy to solve the sleeping problem, rather than reacting emotionally. Correct! 9 Gently remind the person that it is dark outside and it is time to sleep. If needed try to relax the person, for example by playing soothing music. Great idea! Which of the responses below would you choose if the person you care for experiences sleeping problems? 9 Read aloud to the person you care for. Choose something that you know has a calming effect, perhaps a poem or story. Sing a song or chant together. Another option is to pray or meditate for 15 minutes together. Good response! 9 Comfort the person living with dementia. Give them a stuffed animal and hug or hold them until they fall asleep. Great idea! 4. Check your understanding Dealing with waking in the middle of the night (2). AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 5 iS u p p o rt In te rv e n ti o n M an u al MODULE 5 223 Why is this lesson important? Unreal thoughts and seeing things that aren’t there (delusions and hallucinations) can be very upsetting to the person living with dementia and the carer. How will this lesson help me? This lesson will help you identify ways to stop or reduce delusions and hallucinations and how you might change the way that you respond to them. What will I learn? 1. Why do people with dementia have unreal thoughts and see or hear things that aren’t there? 2. How to stop or reduce delusions and hallucinations? Lesson 6. Delusions and hallucinations 1. Why do people with dementia have unreal thoughts and see or hear things that aren’t there? People with dementia may not understand the world around them because of changes in their brain. These misunderstandings are called delusions (unreal thoughts) and hallucinations (seeing or hearing things that are not there). A delusion is a fixed false belief. For example, the person may hold the false belief of being under threat or harm from the carer. To the person living with dementia the error in thinking is very real, causes fear and may result in distressing self- protective behaviours. If the person is experiencing a hallucination, they might see or hear things that are not there, for example, people talking in the room. People with dementia with these ideas need a lot of understanding and support from the person taking care of them. Le ss on 6 . D elu sio ns an d ha llu cin at io ns iS u p p o rt In te rv e n ti o n M an u al MODULE 5 224 Has the person you care for ever had any unreal thoughts or seen or heard things that were not there? You can describe them in the space below, like in a diary. 1. Activity Unreal thoughts or seeing/hearing things that are not there are common problems for some people with dementia. In this lesson, you will learn how to deal with them. Remember Le ss on 6 . D elu sio ns an d ha llu cin at io ns iS u p p o rt In te rv e n ti o n M an u al MODULE 5 225 What would you recommend Martin do? Please check all correct answers. „ Soothe her in a calm voice. „ Lead her away from the woman in the park. „ Directly tell the truth, harshly, to set the record straight. „ Argue with Betty that the young woman is not her sister. „ Say that the young woman in the park is someone who looks like her, but it is not her. „ Involve the woman in the park in any way. „ Try to ‘convince’ Betty of the truth. „ Say “Yes you are right, it is Susan”. „ Say “When we get home, you can look at pictures of Susan and remember her”. 1. Check your understanding Mistaking a person for someone else. 2. How to stop or reduce delusions and hallucinations? Let’s look at the following example Martin’s wife Betty is living with dementia. One day, Martin and Betty are out for a walk. They see a woman in the distance. Betty starts calling loudly “Susan, Susan, I’m over here”. Then she starts running towards a woman unknown to Martin; a young lady who is probably about 20 years old. Betty mistakenly believes that the young woman in the park is her sister who died in a car accident over 30 years ago. The young woman ignores her. Betty becomes very upset. Le ss on 6 . D elu sio ns an d ha llu cin at io ns iS u p p o rt In te rv e n ti o n M an u al MODULE 5 226 „ Soothe her father, by saying in a calm voice “You are safe, I am with you”. „ Soothe her father, by taking his hand and patting it. „ Check if there is anything in the environment that could be causing Larry's hallucination, such as shadows in the room from the sunlight. Make changes as necessary. „ Lead him away from the room. „ Say that it is simply not true, that there are no other people in the room. What would you recommend Mercedes do? Please check all correct answers. 2. Check your understanding Seeing people that are not there. Now let’s look at another example Mercedes’ father Larry is living with dementia. One day, Larry is a bit restless. Suddenly, he starts to look very frightened while staring at a corner in the room. He calls out to his daughter and says, “Do you see them talking?” He screams, “What are you doing there?” Mercedes is so overwhelmed that she feels like running away. She thinks to herself “Dad’s illness is much worse than I thought it was.” Check with the doctor regarding medication side effects that the person living with dementia is using. These may contribute to the problem. Tip Le ss on 6 . D elu sio ns an d ha llu cin at io ns iS u p p o rt In te rv e n ti o n M an u al MODULE 5 227 Let’s look at your own situation It is important to apply what you have learned to your own situation. Which one would you try first? Unreal or unusual thoughts do not happen all the time. What would you do if the person you care for experiences them? Try to describe different appropriate responses in the space below. 2. Activity Sometimes people with dementia have pleasant hallucinations, like seeing beautiful colours or children who are not there. If these visions are not causing the person distress then try to enjoy them together. Remember Le ss on 6 . D elu sio ns an d ha llu cin at io ns iS u p p o rt In te rv e n ti o n M an u al MODULE 5 228 z Unreal thoughts or seeing/hearing things that are not there (delusions and hallucinations) are common in people with dementia. z They can be very upsetting to the person living with dementia and the carer. z Often, people with these visions and unreal thoughts need a lot of reassurance. z It is important to identify ways to reduce them, not by arguing with the person you care for, but by comforting and distracting them. z Check the environment to see if there is a cause for the delusion or hallucination. z If one approach doesn’t work, try another one. z Remind yourself that unreal thoughts or visions are part of the disease. z Take a deep breath and think about the best ways to respond that will be the least distressing to you and the person you care for if they are experiencing unreal thoughts or visions. You finished this lesson, well done! Let’s review what you have learned Le ss on 6 . D elu sio ns an d ha llu cin at io ns iS u p p o rt In te rv e n ti o n M an u al MODULE 5 229 iS u p p o rt In te rv e n ti o n M an u al ANSWERS - DEALING WITH BEHAVIOUR CHANGES Lesson 6. Delusions and hallucinations 9 ✓Soothe her in a calm voice. This is a good response because people with delusions and hallucinations may feel frightened and insecure. 9 ✓Lead her away from the woman in the park. This is a good response because it will distract her from the young woman in the park. ✓ 8 Directly tell the truth, harshly, to set the record straight. This is not a good response as it may make Betty even more upset. ✓✓ 8 Argue with Betty that the young woman is not her sister. This is not a good response as it may make Betty even more upset. 9 Say that the young woman in the park is someone who looks like her, but it is not her. This is a good response because it maintains a positive social environment. 8 Involve the woman in the park in any way. This is not helpful because it may make the situation more complicated. 8 Try to ‘convince’ Betty of the truth. This is not a good response as Betty may not understand. 8 Say “Yes you are right, it is Susan”. This is not correct because it is not the truth. 9 Say “When we get home, you can look at pictures of Susan and remember her”. This is a good response because Martin addresses the importance of her sister, without arguing that the young woman Betty saw in the park was not her sister. 1. Check your understanding Mistaking a person for someone else. AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 6 iS u p p o rt In te rv e n ti o n M an u al MODULE 5 230 iS u p p o rt In te rv e n ti o n M an u al ANSWERS - DEALING WITH BEHAVIOUR CHANGES Lesson 6. Delusions and hallucinations 2. Check your understanding Seeing people that are not there. AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 6 9 Soothe him, by saying in a calm voice “You are safe, I am with you”. This is a good response because people with hallucinations are often feeling frightened and insecure. 9 Check if there is anything in the environment that could be causing his hallucinations, such as shadows in the room from the sunlight. Make changes as necessary. This is a good response because although a person’s brain may be misinterpreting the environment there could still be a reasonable cause for confusion. 9 Lead him away from the room. This is a good response because changing the environment may distract her father and end the hallucination. 8 Say that it is simply not true, that there are no other people in the room. This is not a good response because arguing about what one sees or hears will not help a person experiencing delusions or hallucinations to calm down. iS u p p o rt In te rv e n ti o n M an u al MODULE 5 231 Why is this lesson important? If a person living with dementia repeats things over and over it can be stressful for themselves and the carer. We will refer to this as a ‘repetitive behaviour’. How will this lesson help me? This lesson will help you understand why repetitive behaviours occur, and how to respond to, and reduce, them. What will I learn? 1. What is repetitive behaviour? 2. How to comfort a person living with dementia in case of repetitive behaviours? Lesson 7. Repetitive behaviour 1. What is repetitive behaviour? A person living with dementia may forget what they have said, heard or did from one moment to the next, leading to repeated questions and actions. Usually doing things over and over is not harmful to the person living with dementia, if the carer knows how to deal with it. If not, the person living with dementia can become anxious, aggressive or depressed and the carer can become stressed. As a result, carers may respond inappropriately, for example by screaming, which often makes the person with dementia feel guilty. Le ss on 7 . R ep et iti ve b eh av io ur iS u p p o rt In te rv e n ti o n M an u al MODULE 5 232 Let’s look at your own situation Does the person you care for ever do or say things over and over again? What behaviour(s) do they repeat? You can describe them in the space below, like a diary. 1. Activity Le ss on 7 . R ep et iti ve b eh av io ur iS u p p o rt In te rv e n ti o n M an u al MODULE 5 233 What would you recommend to John? Please select all correct responses. „ Say “What’s wrong with you? Can’t you remember? We just had lunch!” „ Stay calm and reassure his father that his wife will be home soon. „ Engage his father in an activity. „ Write down the answers to his questions, for example where his wife is and when she is expected to return. „ Walk away. „ Accept the repetitive questions. If it isn’t harmful, let it be. Find ways to adapt. „ Offer his father a snack or a drink. 1. Check your understanding Repeating questions. Let’s look at this example John is taking care of his father Joe, because his mother, the main carer, is out of the house for a few hours. All seems fine, although John notices that his father is rather tense because John’s mother is not there. John and Joe eat lunch together. Sometime after finishing lunch, Joe asks “When is lunch?” and, “What are we having for lunch?” John does not think much of it at first. Then, again, a few minutes later, Joe asks “When is lunch?”, “What are we having for lunch?”, and “Where is your mother?” Joe repeats these questions again and again. John is confused about why Joe is doing this and gets more and more worried about his father. John continues to answer the questions, but gets a bit upset and raises his voice. John responds, loudly and is annoyed, “I have already answered these questions, why do you keep asking?” 2. How to comfort a person living with dementia in case of repetitive behaviours? Le ss on 7 . R ep et iti ve b eh av io ur iS u p p o rt In te rv e n ti o n M an u al MODULE 5 234 Let’s look at your own situation It is important to apply what you have learned to your own situation. The spaces below are for you, like a diary. Now look back at the examples that you identified in the previous activity. Choose the repetitive behaviour that is the most stressful to the person that you care for, or to yourself, and list it below. What could you do to help reduce this behaviour? How could you change your response to this behaviour? 2. Activity Le ss on 7 . R ep et iti ve b eh av io ur iS u p p o rt In te rv e n ti o n M an u al MODULE 5 235 z Doing or saying things over and over again (repetitive behaviour) is common in people with dementia. z Repetition can be very stressful to deal with. z In case of repetition, try to focus on comforting the person you care for. z Try to identify what comes before the repetitive behaviour and what may increase it. Then try to change it. Try to identify how you respond and change that also. z Realize there may be worse, but also better moments. z Remind yourself that repetitive behaviours are part of the disease. z Take a deep breath and think about the best ways to respond that will be the least distressing to you and the person living with dementia if they do or say things over and over again. You finished this lesson, well done! Let’s review what you have learned Le ss on 7 . R ep et iti ve b eh av io ur iS u p p o rt In te rv e n ti o n M an u al MODULE 5 236 iS u p p o rt In te rv e n ti o n M an u al 8 Say “What’s wrong with you? Can’t you remember? We just had lunch!” This is not a good response because John is blaming his father for something that he can’t help. 9 Stay calm and reassure his father that his wife will be home soon. This is a good response as repetition might worsen due to Joe’s feelings of insecurity. He seems to feel insecure because his wife went out. By reassuring Joe that his wife will come back soon, the repetition may lessen or stop. 9 Engage his father in an activity. This can be a good response because it may distract his father and offer something else to see, hear or do. 9 Write down the answers to his questions, for example where his wife is and when she is expected to return. This might work well, may reassure Joe and stop him from asking again. 8 Walk away. This response is not so good because it will only upset his father more. 9 Accept the repetitive questions. If it isn’t harmful, let it be. Find ways to adapt. This can be a good response. Perhaps if it is just repetitive questioning, by remaining calm the behaviour may decrease. 9 Offer his father a snack or a drink. This might be a good response. Perhaps Joe is still hungry or thirsty. It may help to calm him and meet his need. 1. Check your understanding Repeating questions. ANSWERS - DEALING WITH BEHAVIOUR CHANGES Lesson 7. Repetitive behaviours AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 7 iS u p p o rt In te rv e n ti o n M an u al MODULE 5 237 Why is this lesson important? Concerns about walking and getting lost can cause distress. Carers like you may worry whether the person will get lost. How will this lesson help me? This lesson will help you understand the reasons for walking and what to do to reduce the chances of the person living with dementia getting lost. What will I learn? 1. Why is walking a concern? 2. Why a person with dementia might want to walk around? 3. How can I manage habits and reduce the chances that the person I care for gets lost? Lesson 8. Walking and getting lost 1. Why is walking a concern? People with dementia may have the habit of walking around the home or leaving the house and wanting to walk around the neighbourhood, this is also called wandering. This is very common. However, they may get lost. So, safety is a primary concern when people with dementia are out alone. It is important to prevent wandering. This lesson will teach you why people with dementia may have a desire to walk. You will also learn about the steps that you can take to help make this safer. It is important to find ways to help prevent people with dementia from getting lost or ending up in an unsafe situation. Le ss on 8 . W al ki ng an d ge tti ng lo st iS u p p o rt In te rv e n ti o n M an u al MODULE 5 238 Does the person you care for sometimes walk around or walk away? You can describe what happens in the space below, like in a diary. 1. Activity 2. Why a person with dementia might want to walk around? A person with dementia who wanders or walks away may be: z Wanting to exercise. z Continuing a lifelong habit of walking regularly. z Relieving boredom due to not being sufficiently stimulated. z Using up energy from sitting all day. z Relieving pain and discomfort from joint pain or stiffness. z Responding to stress or anxiety. z Feeling lost or uncertain about their surroundings. z Going out and forgetting where they were going. z Searching for someone or something in the past or present. z Seeking fulfilment and purpose such as the desire to go to work. z Getting confused about the time. Le ss on 8 . W al ki ng an d ge tti ng lo st iS u p p o rt In te rv e n ti o n M an u al MODULE 5 239 There are certain things that may help manage a person’s walking habits and prevent them from getting lost. For example, try to: 3. How can I manage habits and reduce the chances that the person I care for gets lost? z Make sure that the person carries some form of identification. z Make sure that your home is secure, that the person is safe in your home and cannot leave without you knowing. For example, camouflaging doors and door knobs may help, or using a bell or curtain that makes noise when someone uses the door. z Keep an up-to-date photograph in case the person you care for gets lost and you must ask for help from others. z After the person you care for is found, speak calmly, with acceptance and love, try to avoid blaming and showing anger. z Keep to the routines and activities of the person you care for. Identify the most likely times of the day that their walking may occur and plan activities such as a walk in the park together at that time. z Reassure the person you care for if they feel lost, abandoned or disoriented, or want to leave to “go home" or “go to work". For example, try saying: “we are staying here tonight. We are safe and I'll be with you. We can go home in the morning after a good night's rest." Try to refrain from correcting the person living with dementia. z Ensure that all basic needs are met. Has the person gone to the bathroom? Are they thirsty or hungry? z Avoid busy places that are confusing and can cause disorientation, such as shopping malls, markets, grocery stores or other crowded places. Le ss on 8 . W al ki ng an d ge tti ng lo st iS u p p o rt In te rv e n ti o n M an u al MODULE 5 240 Let’s look at an example Amit has dementia and is supported by his wife, Samia. Samia is cooking dinner when she hears Amit heading for the door. She knows that he likes to go for afternoon walks, but now is not a good time since she is cooking. What would you recommend to Samia? Please select all correct responses. „ Yell to Amit from the kitchen, “please stop! I can’t come with you now.” „ Turn the cooker off and follow Amit. „ Forbid Amit to leave and pull him back into the house. „ Go to where Amit is standing by the door and calmly say: “let’s eat dinner first and we’ll go for a walk later.” „ Lock the door so that Amit cannot leave. „ Let Amit leave and call a neighbour to keep an eye out for him. „ Ask another family member to go for a walk with him. „ Ask Amit to help with a task in the kitchen. „ Schedule more afternoon walks before dinner. 1. Check your understanding Dealing with walking away. Le ss on 8 . W al ki ng an d ge tti ng lo st iS u p p o rt In te rv e n ti o n M an u al MODULE 5 241 Let’s look at your own situation It is important to apply what you have learned to your own situation. The spaces below are for you, like a diary. What are the possible reasons why the person you care for may have the desire to walk? Please select all answers that apply. Based on the reasons that you selected, how might you react or respond the next time the person you care for wants to go outside or walk? 2.1. What could you do to help the person enjoy walking in a safe way? Take a moment to summarize the points that you have learned in this lesson, which will help you going forward: „ Wanting to exercise. „ Continuing a lifelong habit of walking regularly. „ Relieving boredom due to not being sufficiently stimulated. „ Using up energy from sitting all day. „ Relieving pain and discomfort from joint pain or stiffness. „ Responding to stress or anxiety. „ Feeling lost or uncertain about their surroundings. „ Going out and forgetting where they were going. „ Searching for someone or something in the past or present. „ Seeking fulfilment and purpose such as the desire to go to work. „ Getting confused about the time „ Other (please state): 2. Activity Le ss on 8 . W al ki ng an d ge tti ng lo st iS u p p o rt In te rv e n ti o n M an u al MODULE 5 242 z Walking around or walking away is common. z Walking can be healthy exercise, reduce boredom, and be a common habit or routine of the person. z Walking away or walking alone might be a safety risk. z Concerns about walking and getting lost can be very upsetting to the person living with dementia and the carer. z It is important to identify possible reasons for walking around or walking away. z How you respond to the desire to walk should be based on the possible reasons for it. z If one approach doesn’t work, try another one. z Realize that there may be worse, but also better moments. z Take a deep breath and think about the best ways to respond that will be the least distressing to you and the person living with dementia. If you want to know more about how to plan an enjoyable day, please refer to the Lesson 5. An enjoyable day in Module 4. You finished this lesson, well done! Let’s review what you have learned Le ss on 8 . W al ki ng an d ge tti ng lo st iS u p p o rt In te rv e n ti o n M an u al MODULE 5 243 iS u p p o rt In te rv e n ti o n M an u al Relaxation exercise - Neck movements AN SW ER S - D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 8 ANSWERS - DEALING WITH BEHAVIOUR CHANGES Lesson 8. Walking and getting lost 8 Yell to Amit from the kitchen, “please stop! I can’t come with you now.” This is not a good response because yelling at Amit from the kitchen may confuse and agitate him. It may also not stop him from going out on his own. 9 Turn the cooker off and follow Amit. This is a good response if there are no other alternatives. 8 Forbid Amit to leave and pull him back into the house. This is not a good response because Amit may get agitated and resist being pulled which could result in Amit or Samia being harmed. 9 Go to where Amit is standing by the door and calmly say: “Let’s eat dinner first and we’ll go for a walk later.” This is a good response because Samia stays calm, does not yell, and honors Amit’s wishes by telling him that they will go together after dinner. 9 Lock the door so that Amit cannot leave. This is a good response if no other options exist and Samia is in the house with Amit. For fire safety reasons, a person living with dementia who requires supervision should never be locked inside a house without another person there. 9 Let Amit leave and call a neighbour to keep an eye out for him. This is a good option if Samia has prearranged with the neighbours to keep an eye out for him. If Amit is in the very early stages of dementia, he may be okay while going out on his own to places that are familiar to him. 9 Ask another family member to go for a walk with him. This is a good option. Samia can finish cooking dinner and Amit can enjoy a nice walk before dinner. 1. Check your understanding Dealing with walking away. iS u p p o rt In te rv e n ti o n M an u al MODULE 5 244 iS u p p o rt In te rv e n ti o n M an u al Relaxation exercise - Neck movements AN SW ER S - D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 8 9 Ask Amit to help with a task in the kitchen. This is a good response because it involves distracting Amit from going for a walk alone and gives him purpose and keeps him occupied. 9 Schedule more afternoon walks before dinner. This is a good response because planning ahead will prevent Samia from being interrupted when cooking dinner to assist Amit. It may also help Amit to release some energy and come home to relax before dinner. 1. Check your understanding (continued) Dealing with walking away. iS u p p o rt In te rv e n ti o n M an u al MODULE 5 245 Why is this lesson important? Changes in judgement can be upsetting to the person living with dementia and the carer. How will this lesson help me? This lesson will help you understand the reasons causing changes in judgement and teach you skills to manage this. What will I learn? 1. What are changes in judgement? 2. How can you manage changes in judgement? 3. What to do if the changes in judgement are more serious? Lesson 9. Changes in judgement 1. What are changes in judgement? Changes in judgement may include saying the wrong thing at the wrong time, acting inappropriately in a situation, or not understanding one’s own limitations. Usually these actions are not harmful, but they can be stressful or embarrassing for the person living with dementia or the carer. People with dementia are often looking for guidance or reassurance. Le ss on 9 . C ha ng es in ju dg em en t iS u p p o rt In te rv e n ti o n M an u al MODULE 5 246 Did you ever notice that the person you care for sometimes has a change in their judgement? If so, what did you observe? Please describe this in the space below. How did it affect you as the carer? 1. Activity Tip Changes in judgement will increase as dementia progresses. In this lesson you can practice several ways of responding to changes in judgement and find out what may help. Le ss on 9 . C ha ng es in ju dg em en t iS u p p o rt In te rv e n ti o n M an u al MODULE 5 247 2. How can you manage changes in judgement? Let’s go through an example Ivan is in town visiting his aunt Isabel who has dementia. They are on their way to a restaurant for dinner. In order to get there, Ivan decides to hail a taxi. All of a sudden, the car pulls up alongside Isabel and startles her. Isabel, who is normally a very gentle woman, starts scolding the taxi driver. What would you recommend to Ivan to help him deal with this situation? Please select all correct responses. „ Put his hand on Isabel’s mouth in order to stop her scolding the driver. „ Walk Isabel back to her apartment and leave because what happened is embarrassing. „ Stay calm and reassure Isabel everything is alright. „ Accept the behaviour. If the taxi driver doesn’t seem to notice, let it be. Find ways to adapt. „ Ivan could carry a business card that explains, ‘My companion has dementia, please be patient with us.’ and give this card to the taxi driver. 1. Check your understanding Managing changes in judgement. Le ss on 9 . C ha ng es in ju dg em en t iS u p p o rt In te rv e n ti o n M an u al MODULE 5 248 3. What to do if changes in judgement are more serious? The last example was a brief and one-time experience for Ivan. However, what happens if the changes in judgement experienced by a person living with dementia are more serious? Here are three examples to help you learn how to react. Mishandling finances Sophie has dementia and lives alone. Her cousin Julia has come to visit her. Despite the fact that Sophie has always been organised, Julia arrives to find that there is a large pile of unopened mail on the kitchen table. Julia wonders if Sophie has had some trouble paying her bills. She asks Sophie about her finances. Sophie cannot remember whether she has paid her bills or not, does not know when they are due, and cannot recall how much money she has in her bank account. Julia becomes quite concerned. What would you recommend to Julia? Please select all correct responses. „ Stay calm and call Sophie’s daughter. „ Go to the bank and ask for control of Sophie’s finances. „ Leave because she feels uneasy. „ Ask Sophie if she would like some help in opening her mail. „ ✓Try to find out whether Sophie has someone who handles her finances, like a family member or a professional. 2. Check your understanding Managing more serious changes in judgement (1). Le ss on 9 . C ha ng es in ju dg em en t iS u p p o rt In te rv e n ti o n M an u al MODULE 5 249 Insisting on driving Hugo is living with dementia. His neighbour, Pablo, notices that his car is parked very strangely one day, obstructing some of the other cars on the street. Pablo walks out of his apartment, sees Hugo and attempts to start a conversation. Instead of stopping, Hugo jumps in his car, speeds off and takes an illegal left turn out of the compound. Hugo returns quickly and nothing bad seems to have happened. What would you recommend to Pablo? Please select all correct responses. „ Immediately seize Hugo’s car keys when he returns. This will prevent it from happening again. „ Stay calm and ask whether Hugo has any other places to go that day, and if so, offer him a ride. „ Ignore the situation because it is embarrassing. „ Ask Hugo if he would like some help figuring out transportation. „ Tell Hugo that he is concerned about his driving and suggest visiting his doctor to discuss it. „ Report the incident to Hugo’s carer, friend or family member. 3. Check your understanding Managing more serious changes in judgement (2). It is better if the decision not to drive comes from the person living with dementia. Giving up driving is typically a difficult time in the person’s life where they are losing independence. Alternatives such as offering regular rides, teaching the person how to use public transportation or arranging taxis will help the person stay active and involved in their community activities. It is important that the person does not become isolated or lonely once they give up driving. More effort will be needed to keep them connected to the world outside their home. Tip Le ss on 9 . C ha ng es in ju dg em en t iS u p p o rt In te rv e n ti o n M an u al MODULE 5 250 Inappropriate sexual advances Mateo is in his late 70s, has dementia and lives with his family. Two days a week, an in-home aide, Camila, who is 22 years old, comes to help him take a bath and administer his medication. This arrangement has been working well for several months. One day, while preparing for his bath, Mateo makes some sexual remarks and tries to pull Camila close to him. Camila is shocked and surprised. She runs out of the room and tells the family that she can no longer work there. If the inappropriate advances continue, the family might want to consider hiring a male in-home aide instead of a female one which could prevent this behaviour. They also might seek help from a professional. Tip What would you recommend to Mateo’s family? Please select all correct responses. „ Stay calm and tell Mateo that this behaviour is unacceptable. Explain who Camila is. „ Change the bathing situation. Perhaps Camila can set up a sponge bath and Mateo can do more himself. „ Change the environment. Put a towel or robe over Mateo’s shoulders while he is being bathed to keep him covered for privacy. „ Shout at Mateo, shaming him for his conduct. „ Ignore the situation. 4. Check your understanding Managing more serious changes in judgement (3). Le ss on 9 . C ha ng es in ju dg em en t iS u p p o rt In te rv e n ti o n M an u al MODULE 5 251 Let’s look at your own situation It is important to apply what you have learned to your own situation. Earlier, we asked whether the person you care for sometimes shows changes in judgement. After going through these examples, think again about your own situation. The spaces below are for you, like a diary. Does the person living with dementia sometimes show changes in judgement? In what way could you respond? Take a moment to summarize the points that you have learned, which will help you deal with changes in judgment in the future. 2. Activity Changes in judgement may hamper decision-making. If you want to know more, review Lesson 3. Supported decision-making in Module 2. Remember Le ss on 9 . C ha ng es in ju dg em en t iS u p p o rt In te rv e n ti o n M an u al MODULE 5 252 z Changes in judgement usually increase as dementia progresses. z Changes in judgement can be very upsetting for the person living with dementia and the carer. z It is important to reduce or prevent changes in judgement, whenever possible. z Realize that there may be good and bad days. z Remind yourself that this is a part of the disease. z Take a deep breath and think about the best ways to respond that will be the least distressing to you and the person you care for. z Plan for increasing levels of changes in judgement. You finished this lesson, well done! Let’s review what you have learned Le ss on 9 . C ha ng es in ju dg em en t iS u p p o rt In te rv e n ti o n M an u al MODULE 5 253 iS u p p o rt In te rv e n ti o n M an u al 8 ✓Put his hand on Isabel’s mouth in order to stop her scolding the driver. This response is not good because it may even worsen the situation and cause Isabel further agitation. ✓ 8 Walk Isabel back to her apartment and leave because what happened is embarrassing. This response is not good because Isabel may feel bad and isolated. 9 ✓Stay calm and reassure Isabel everything is alright. This is a good response because it shows Ivan cares about Isabel. It may stop her from scolding the taxi driver and make her feel more relaxed. What would you recommend to Ivan? 9 ✓Accept the behaviour. If the taxi driver doesn’t seem to notice, let it be. Find ways to adapt. This can be an appropriate response if the behaviour is not harming anyone. 9 Ivan could carry a business card that explains, ‘My companion has dementia, please be patient with us.’ and give this card to the taxi driver. This is a good response because it relieves Ivan from explaining the situation to the taxi driver which may embarrass Isabel. 1. Check your understanding Managing changes in judgement. ANSWERS - DEALING WITH BEHAVIOUR CHANGES Lesson 9. Changes in judgement AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 9 iS u p p o rt In te rv e n ti o n M an u al MODULE 5 254 iS u p p o rt In te rv e n ti o n M an u al 9 Stay calm and call Sophie’s daughter. This response is good because Julia shares her worries with Sophie’s closest relative, her daughter, who might know more and can arrange help if needed. 8 Go to the bank and ask for control of Sophie’s finances. This is not appropriate because it is Sophie’s decision to appoint a person that she is comfortable with to help manage her finances. 8 Leave because she feels uneasy. This response is not appropriate. If Sophie has problems dealing with her finances, letting the situation continue could make things worse. What would you recommend to Julia? 9 Ask Sophie if she would like some help with opening her mail. This response is good because Sophie may be able to pay her bills if given the right prompts, such as opening the bills in front of her and cueing her to pay one at a time. 9 Try to find out whether Sophie has someone who handles her finances, like a family member or a professional. This is a good response because Sophie may be at the point in her illness where she is no longer able to handle the finances on her own. If it seems that she is not getting any help with handling her finances, Julia may want to call her daughter to share her worries. 2. Check your understanding Managing more serious changes in judgement (1). ANSWERS - DEALING WITH BEHAVIOUR CHANGES Lesson 9. Changes in judgement AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 9 iS u p p o rt In te rv e n ti o n M an u al MODULE 5 255 iS u p p o rt In te rv e n ti o n M an u al 8 Immediately seize Hugo’s car keys when he returns because this will prevent it from happening again. This is not a good response because Pablo cannot decide whether his neighbour should drive anymore, and Hugo may become angry. 9 Stay calm and ask whether Hugo has any other places to go that day, and if so, offer him a ride. This is a good response because it prevents Hugo from driving unsafely and provides safe transportation, so Hugo can run his errands. 8 Ignore the situation because it is embarrassing. This response is not good because Hugo’s driving may cause harm to himself and others. What would you recommend to Pablo? 9 Ask Hugo if he would like some help figuring out transportation. This response is appropriate because Hugo may be able to safely ride a bus or walk, preventing any unsafe behaviour. 9 Tell Hugo that he is concerned about his driving and suggest visiting his doctor to discuss it. This is a good response as Pablo respects Hugo by being honest and raising a concern. 9 Report the incident to Pablo’s carer, friend or family member. This is a possible response. Pablo may not know if Hugo has dementia and could be concerned about the risk of harm to Hugo and others. 3. Check your understanding Managing more serious changes in judgement (2). AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 9 iS u p p o rt In te rv e n ti o n M an u al MODULE 5 256 iS u p p o rt In te rv e n ti o n M an u al 9 Stay calm and tell Mateo that this behaviour is unacceptable. Explain who Camila is. This option is a good one. Mateo’s family does not overreact because they remember it is the disease taking effect. They redefine the appropriate boundaries for Camila’s safety. 9 Change the bathing situation. Perhaps Camila can set up a sponge bath and Mateo can do more himself. This is a good option. Letting Mateo do more himself will distract him. In this way, both Camila and Mateo’s dignity are maintained. What would you recommend to Mateo’s family? 9 Change the environment. Put a towel or robe over Mateo’s shoulders while he is being bathed to keep him covered for privacy. This is a good response. Perhaps because Mateo is naked, he misunderstands the situation. 8 Shout at Mateo, shaming him for his conduct. This response is not good because as part of his dementia Mateo may not know that these advances are inappropriate. Therefore, try not to overreact. 8 Ignore the situation. This response is not good because Mateo may continue to make inappropriate sexual advances and cause distress to Camila. 4. Check your understanding Managing more serious changes in judgement (3). AN SW ER S- D EA LI NG W IT H BE HA VI OU R CH AN GE S • L es so n 9 iS u p p o rt In te rv e n ti o n M an u al MODULE 5 257 Why is this lesson important? Certain changes in behaviour can be particularly stressful for the person living with dementia and the carer. How will this lesson help me? This lesson will summarize ways to prevent, reduce or manage behaviour changes. What will I learn? 1. The most important things to keep in mind when dealing with challenging behaviours. 2. Practical tips on not blaming yourself, sharing your feelings with others and making time for yourself. Lesson 10. Putting it all together 1. The most important things to keep in mind when dealing with behaviour changes z Behaviour changes can be stressful for the person you care for and yourself. This is quite common. z Try to make the person you care for feel more comfortable. z Look for ways to prevent or reduce behaviour changes that are stressful, for example by using memory aids. z Try to distract the person you care for, don’t argue. z When one approach does not work, try another one. z Realize that there may be good and bad days. z Consult a medical doctor to identify any causes related to medication or illness. z Identify whether the environment or your approach could be causing the particular symptom. z Remind yourself that behaviour changes are part of the disease but other possible causes should be identified before accepting the disease as a cause. Le ss on 1 0. P ut tin g it al l t og et he r iS u p p o rt In te rv e n ti o n M an u al MODULE 5 258 2. Practical tips on not blaming yourself, sharing your feelings with others and making time for yourself Here are some tips from related lessons. If you did not take these lessons yet, you can complete them after finishing this one. z Don’t blame yourself or the person living with dementia for the problems that you encounter. If you want to work on ways to manage your feelings, take a look at the last page of Lesson 3. Thinking differently in Module 3. z Share your feelings about your experiences as a carer with others. If you keep them to yourself it may be more difficult for you to look after your family member or friend. If you want to learn more about involving others, take a look at Lesson 4. Involving others in Module 2. z It is essential that you make time for yourself. This will allow you to do the things that you value in life, such as spending time with others or enjoying your favourite hobbies. If you want to learn more about doing pleasant activities, take a look at Lesson 2. Making time for pleasant activities in Module 3. You finished this lesson, well done! Le ss on 1 0. P ut tin g it al l t og et he r

Worldwide, carers of people with dementia should have access to information and support in order to effectively respond to, and manage, the physical, mental and social demands associated with caring for someone living with dementia. This iSupport manual has been developed to provide accessible, evidence-based training and information, tailored to carers’ needs. It aims to improve knowledge and caregiving skills, such as carers’ ability to cope with dementia symptoms and care for themselves. iSupport is also available online and can be accessed at www.isupportfordementia.org/en. For further information, please contact: Department of Mental Health and Substance Abuse World Health Organization Avenue Appia 20 CH-1211 Geneva 27 Switzerland Email: whodementia@who.int Wesbite: www.who.int/mental_health/neurology/dementia/en ISBN: 9789241515863

1iSupport для деменции Руководство по обучению и поддержке для лиц, осуществляющих уход за людьми с деменцией iSupport для деменции. Руководство по обучению и поддержке для лиц, осуществляющих уход за людьми с деменцией © Благотворительный фонд ПАМЯТЬ ПОКОЛЕНИЙ 2023 Этот перевод не был создан Всемирной организацией здравоохранения (ВОЗ). ВОЗ не несет ответственности за содержание или точность этого перевода. Оригинальное английское издание iSupport for dementia: руководство по обучению и поддержке лиц, осуществляющих уход за людьми с деменцией. Женева: Всемирная организация здравоохранения; 2019. Лицензия: CC BY-NC-SA 3.0 IGO является обязательным и аутентичным изданием. Эта переведенная работа доступна под лицензией CC BY-NC-SA 3.0. 3Модуль 4. Обеспечение ежедневного ухода Урок 1. Еда и питье: подходящее время для приема пищи Урок 2. Еда, питье и профилактика проблем со здоровьем Урок 3. Использование туалета и уход за человеком при недержании Урок 4. Личная гигиена Урок 5. Приятный день Модуль 5. Как справляться с изменениями в поведении Урок 1. Введение в вопрос изменения поведения Урок 2. Потеря памяти Урок 3. Агрессия Урок 4. Депрессия, тревожность и апатия Урок 5. Проблемы со сном Урок 6. Бред и галлюцинации Урок 7. Повторяющееся поведение Урок 8. Прогулки и ситуация, когда человек потерялся Урок 9. Изменения в способности здраво мыслить Урок 10. Подведение итогов Модуль 2. Что значит быть лицом, осуществляющим уход Урок 1. Совместный путь Урок 2. Улучшение коммуникаций Урок 3. Поддержка в принятии решений Урок 4. Привлечение к помощи других лиц Модуль 3. Забота о самом себе Урок 1. Снижение уровня стресса в повседневной жизни Урок 2. Выделение времени для приятных занятий Урок 3. Думать по-другому Модуль 1. Введение в понятие «деменция» Выражение признательности Предисловие Руководство пользователя Содержание 4iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м В ы р аж е н и е п р и зн ат е л ьн о ст и Замысел, концепция и управление проектом Тарун Дуа, Энн Маргриет Пот (менеджер проекта), Шекхар Саксена, Дайана Занди. Координация и редактирование проекта В группу, которая координировала разработку руководства, включая написание и редактирование, входили Нирджа Чоудхари, Стефани Фреэль, Энн Маргриет Пот и Катрин Сиэр. Содействие Ценная помощь и советы были получены от многих организаций, экспертов, людей с деменцией и лиц, осуществляющих уход, которые внесли свой вклад в разработку iSupport, включая, помимо прочего, упомянутых ниже специалистов. Содействие по ключевым направлениям Долорес Галлахер-Томпсон, Стэнфордский университет, Стэнфорд, США; Кала Мехта, Стэнфордский университет, Стэнфорд, США; Бернадет Виллемс, Центр сотрудничества ВОЗ по распространению передовой практики в области психического здоровья, Институт «Тримбос», Утрехт, Нидерланды; Лилли Сяо, Университет Флиндерса, Аделаида, Австралия. Технические рецензенты и консультанты Эмилиано Албанезе, Центр сотрудничества ВОЗ по распространению передовой практики в области психического здоровья, Женевский университет, Швейцария; Николь Батч, Международная организация по борьбе с болезнью Альцгеймера, Лондон, Великобритания; Упасана Баруа, Национальный институт психического здоровья и неврологии, Бангалор, Индия; Кики Эдвардс, Розетти Карэ, Ибадан, Нигерия; Кирен Эган, Центр сотрудничества ВОЗ по распространению передовой практики в области психического здоровья, Женевский университет, Швейцария; Мариэлла Герра, Институт памяти, Лима, Перу; Джейна Холройд-Ледук, Университет Калгари, Канада; Тимоти Квок, Центр позитивного старения жокей-клуба, Китайский университет Гонконга, Гонконг; Марлин Принс, Центр сотрудничества ВОЗ по распространению передовой практики в области психического здоровья, Тримбос Инститьют, Утрехт, Нидерланды; Сантош Логанатан, Национальный институт психического здоровья и неврологии, Бангалор, Индия; Прафулла Шивакумар, Национальный институт психического здоровья и неврологии, Бангалор, Индия; Ириш ван Аш, Центр сотрудничества ВОЗ по распространению передовой практики в области психического здоровья, Тримбос Инститьют, Утрехт, Нидерланды; Мэтью Варгезе, Национальный институт психического здоровья и неврологии, Бангалор, Выражение признательности 5Индия; Хуали Ванг, Центр лечения и исследования деменции, Институт психического здоровья Пекинского университета, Пекин, Китай; Марк Вортманн, Марк Вортманн Консалтинг. Персонал, консультанты и стажеры ВОЗ Элисон Брюнье, Кеннет Карсуэлл, Эмма Крэдок, Софи Д’Суза, Мелисса Харпер Шехаде, Марий Каат, Девора Кестель, Неха Кинаривалла, Аннет Кляйбур, Харлин Рай, Даг Рекве, Хирал Шах, Марк ван Оммерен, Шуо Ван. Административная поддержка Кэролайн Хермент, Жаклин Лэшли, Аделина Лу, Офель Риано. Производственная группа Разработка (веб-версия): Ирис Розье, Кирстен ван дер Верфф, Катерина Мартин Абелло,Центр сотрудничества ВОЗ по распространению передовой практики в области психического здоровья, Институт Тримбос, Утрехт, Нидерланды, в сотрудничестве с Дипак Бхикхари, Эди Река, Кес Схоутен, Аан Зее, Нордвейк-ан-Зее, Нидерланды. Иллюстрации: Джанет ван дер Верфф, Драхтен, Нидерланды. Графический дизайн и верстка (руководство iSupport): Ван Клиф Эмнасен, Филиппины. Редактор: Гарриет Пейн, Международная организация по борьбе с болезнью Альцгеймера, Лондон, Великобритания. Финансовая поддержка ВОЗ хотела бы поблагодарить следующие страны/агентства за поддержку разработки и производства iSupport: Ассоциация по борьбе с болезнью Альцгеймера (США) и Министерство здравоохранения, социального обеспечения и спорта Нидерландов. Ни один из них не несет индивидуальной ответственности за содержание, функционирование или отображение данных в iSupport. iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м В ы р аж е н и е п р и зн ат е л ьн о ст и 6Деменция является основной причиной нарушений, которые влияют на память, мышление и поведение человека и мешают ему выполнять повседневные действия. Это затрагивает всех людей на планете, особенно пожилых. Во всем мире реальность такова, что большую часть ухода за людьми с деменцией обеспечивают их семьи. Деменция оказывает существенное влияние на самого человека, живущего с деменцией, а также на его семью, общество и страны как с финансовой точки зрения, так и с точки зрения гуманитарных последствий. Глобальный план действий общественного здравоохранения по реагированию на деменцию на 2017-2025 гг. – это важный шаг вперед для создания физического, психического и социального благополучия людей с деменцией, их семей, а также лиц, осуществляющих уход за ними. Он предлагает отдельным лицам, сообществам и даже целым странам видение мира, при котором отрицательные эффекты деменции сдерживаются, а люди с деменцией и те, кто осуществляет уход за ними, получают заботу и поддержку, реализуют свой потенциал с достоинством и уважением, осознавая свою самостоятельность и имея равные права. Уход за человеком с деменцией может влиять на физическое и психическое здоровье, самочувствие и социальную жизнь лица, осуществляющего такой уход. При организации долгосрочного ухода необходимо учитывать значительную эмоциональную, финансовую и социальную нагрузку ухода за людьми с деменцией на семью и родственников. При этом важно полностью удовлетворять и потребности самих людей с деменцией. Важно предоставить лицам, осуществляющим уход, доступ к образованию, инструментам совершенствования навыков по уходу, отдыху и социальной поддержке с помощью доступных ресурсов. Чтобы удовлетворить эти потребности, Всемирная организация здравоохранения (ВОЗ) разработала iSupport, онлайн-программу обучения и поддержки для лиц, осуществляющих уход за людьми с деменцией. Сейчас онлайн-программа и руководство iSupport проходят испытания. Мы надеемся, что эта программа будет адаптирована и внедрена во многих странах мира. Девора Кестель Директор Департамента по вопросам психического здоровья и употребления психоактивных веществ iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м П р е д и сл о в и е Предисловие 7Во всем мире лица, ухаживающие за людьми с деменцией, должны иметь доступ к информации и поддержке, чтобы эффективно реагировать на физические, психические и социальные потребности человека, живущего с деменцией. iSupport был разработан для предоставления доступного обучения и информации с учетом потребностей лиц, осуществляющих уход. Этот инструмент направлен на улучшение знаний и навыков ухода, таких как способность справляться с проявлениями деменции и не забывать заботиться о себе. iSupport стремится дать людям с деменцией возможность жить в обществе, предотвращая или уменьшая стресс у лиц, осуществляющих уход за ними. Уроки, включенные в данное руководство, были самым тщательным образом продуманы и разработаны, чтобы помочь лицам, осуществляющим уход, справиться с важными проблемами, с которыми они могут столкнуться при уходе за людьми, живущими с деменцией. Что входит в руководство iSupport? Руководство состоит из пяти модулей (см. Рис. 1, стр. 9): (1) введение в понятие «деменция»; (2) что значит быть лицом, осуществляющим уход; (3) проявление заботы о самом себе; (4) обеспечение ежедневного ухода; и (5) реагирование на изменения в поведении, которые могут произойти у людей, живущих с деменцией. Модуль 1 представляет собой введение в определение, что такое деменция, и в том числе описывается, что происходит с людьми с деменцией и что делать, если вы считаете, что у члена вашей семьи или друга есть деменция. Модуль 2 посвящен улучшению коммуникаций, совместному принятию решений и привлечению других людей к уходу за человеком, живущим с деменцией. В Модуле 3 внимание сфокусировано на том, как снизить уровень стресса у лиц, осуществляющих уход, путем выделения времени для себя и для приятных занятий , а также развития умения думать по-другому. Модуль 4 посвящен вопросам жизнеобеспечения людей с деменцией, в том числе, выбору более подходящего времени приема пищи, способам предотвращения проблем со здоровьем, правилам пользования туалетом, уходу при недержании и личной гигиене. iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м Руководство пользователя Р у к о в о д ст в о п о л ьз о в ат е л я 8Наконец, в Модуле 5 представлена информация о распространенных изменениях в поведении людей с деменцией, которые могут быть неприятными и огорчающими, как для человека с деменцией, так и для лица, осуществляющего уход. Эти изменения включают в себя: потерю памяти, агрессию, депрессию и тревогу, проблемы со сном, бред и галлюцинации, повторяющееся поведение, бесцельное хождение и ситуации, когда человек теряется, а также снижение способности здраво мыслить. Кто является целевой аудиторией? Данное руководство предназначено, в первую очередь, для лиц, осуществляющих уход за людьми с деменцией, включая членов семьи и родственников, друзей и других опекунов. Однако, iSupport может заинтересовать и других людей, таких как:  представители неправительственных и некоммерческих организаций (НПО, НКО), обучающие, поддерживающие и предоставляющие информацию лицам, осуществляющим уход за людьми с деменцией;  медицинские и социальные работники, обеспечивающие уход и предоставляющие информацию лицам, осуществляющим уход за людьми с деменцией;  представители бизнеса, разрабатывающие медицинские технологии для лечения деменции, оказывающие медицинскую помощь и предлагающие медицинское страхование.iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м Р у к о в о д ст в о п о л ьз о в ат е л я 9Рисунок 1 iSUPPORT Модуль 1 Введение в понятие «Деменция» Модуль 2 Что значит быть лицом, осуществляющим уход Модуль 3 Забота о самом себе Модуль 4 Обеспечение ежедневного ухода Модуль 5 Как справляться с изменениями в поведении 1.Что такое деменция и как она влияет на человека 1.Введение 2.Потеря памяти 3.Агрессия 4.Депрессия, тревожность и апатия 5.Проблемы со сном 6.Бред и галлюцинации 7.Повторяющее поведение 8.Прогулки и ситуации, когда человек теряется 9.Изменение в способности здраво мыслить 10.Подведение итогов 1.Совместный путь 2.Улучшение коммуникаций 3.Поддерживающее принятие решений 4.Привлечение к помощи других лиц 1.Снижение уровня стресса в повседневной жизни 2.Выделение времени для приятных занятий 3.Думать по-другому 1.Еда и напитки: подходящее время приема пищи 2.Еда, напитки и профилактика проблем со здоровьем 3.Использование туалета и уход при недержании 4.Личная гигиена 5.Приятный день 10 1Пот А.М., Галлахер-Томпсон Д., Сяо Л.Д., Виллемс Б.М., Розье И., Мехта К.М., Занди Д., Дуа Т. iSupport: глобальное руководство ВОЗ по мероприятиям для лиц, осуществляющих неформальный уход за людьми с деменцией. Всемирная психиатрия. 2019 г. Как разрабатывалась программа iSupport? Руководство iSupport опирается на Программу действий по ликвидации пробелов в области психического здоровья (mhGAP) ВОЗ для лиц, осуществляющих уход за людьми с деменцией. Целью этой Программы является расширение услуг здравоохранения и социальной помощи при психических, неврологических расстройствах, а также расстройствах, связанных с употреблением психоактивных веществ для всех стран, при этом особое внимание уделяется странам с низким и средним уровнем дохода (СНСД). Руководство iSupport было разработано на основе фактических данных, касающихся возможности и эффективности обучения лиц, осуществляющих уход, и мероприятий по поддержке, как очно, так и онлайн. Программа была разработана в сотрудничестве с международными экспертами в области ухода за людьми с деменцией и отражает мнение лиц, осуществляющих этот уход. Для получения дополнительной информации о разработке iSupport см. Pot et al (2019)1. Как пользоваться данным руководством iSupport? Программа iSupport была разработана как инструмент самопомощи для лиц, осуществляющих уход за людьми, живущими с деменцией. Каждый модуль разбит на отдельные уроки (см. рис. 1, стр. 9). Все уроки построены по одному принципу. В начале дается обзор того, почему этот урок важен и как он поможет вам как лицу, осуществляющему уход, а также чему вы сможете научиться. Каждый урок включает в себя краткое изложение вопроса, затронутого в данном уроке, и, в том числе новую информацию, примеры, описывающие конкретные ситуации, вопросы с несколькими вариантами ответов и упражнения, позволяющие отработать то, что вы узнали. Вы можете изучить все руководство от начала до конца или выбрать те уроки, изучение которых наиболее актуально в вашей конкретной ситуации. Вы всегда можете вернуться к какому-то конкретному уроку. iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м Р у к о в о д ст в о п о л ьз о в ат е л я 11 Пример. Как вы себя чувствуете сейчас? Выберите все подходящие варианты.  Печальный (ая)  Счастливый (ая)  Злой (ая)  Смущенный (ая) Здесь вам будет предложено подумать о том, как уход за человеком с деменцией влияет на вашу жизнь или на жизнь человека с деменцией. Пример: Какого цвета небо?  Зеленого  Голубого  Красного  Оранжевого Здесь вам будут заданы вопросы о том, что вы узнали в ходе изучения данного урока. В конце каждого урока приведены ответы. Целый урок, посвященный расслаблению включен в Модуль 3 Эти упражнения помогут вам успокоиться и уменьшить уровень стресса Ознакомьтесь с инструкцией по прохождению отдельных упражнений и по действиям, которые вы будете выполнять на протяжении всей программы. Эти упражнения и задания позволят вам проверить свое понимание и поразмышлять над своим обучением на практике. iS u p p o rt Р у к о в о д с т в о п о м е р о п р и я т и я м Р у к о в о д ст в о п о л ьз о в ат е л я Совет Проверьте себя Упражнение Упражнение для расслабления Советы помогут вам задуматься о том, что вы узнали, или подскажут, как применить то, что вы узнали, в вашей повседневной жизни 12 Как адаптировать iSupport? Руководство iSupport представляет собой шаблон, который можно адаптировать к национальным или местным условиям и потребностям. ВОЗ владеет авторскими правами на iSupport. Если вы заинтересованы в адаптации и внедрении iSupport, обратитесь в ВОЗ по адресу whodementia@who.int , чтобы запросить лицензию в соответствии с авторским правом. Это относится как к руководству iSupport, так и к онлайн- программе, доступной по адресу: www.iSupportForDementia.org. iS u p p o rt Р у к о в о д с т в о п о м е р о п р и я т и я м Р у к о в о д ст в о п о л ьз о в ат е л я Другие варианты использования iSupport Хотя iSupport – это, прежде всего, инструмент самопомощи, мы рекомендуем использовать его более широко. Например, чтобы добиться большего эффекта, iSupport можно дополнить рекомендациями волонтеров или медицинских работников. Руководство iSupport также может служить инструментом для организации групповых встреч, образовательных или обеспечивающих поддержку лиц, осуществляющих уход за людьми с деменцией. Оно также может быть использовано как вспомогательный инструмент для участников групп поддержки. Наконец, медицинские работники считают iSupport полезным источником по оказанию помощи и поддержки лицам, осуществляющим уход. Обратите внимание, что как программа онлайн-обучения iSupport, так и данное руководство постоянно анализируются и проходят серьёзную проверку на практике. Также необходимы дополнительные исследования для оценки эффективности адаптации и реализации программы на местном уровне. ВВЕДЕНИЕ В ПОНЯТИЕ «ДЕМЕНЦИЯ» 13 Модуль Введение в понятие «Деменция» В в е д е н и е в п о н я ти е « Д е м е н ц и я » 14 Почему этот урок важен? Деменция – это синдром, который может быть тяжелым не только для человека с деменцией, но и для вас как для лица, осуществляющего уход. Существует множество мифов о деменции, и дополнительная информация поможет объяснить некоторые распространенные заблуждения. Каким образом этот урок поможет мне? Этот урок поможет вам понять, что такое деменция и как она влияет на человека. Эта информация необходима, если вы являетесь лицом, осуществляющим уход. Что я смогу узнать? 1. Что такое деменция? 2. Что вызывает деменцию? 3. Что происходит с людьми с деменцией по мере развития заболевания? 4. Что делать, если вы считаете, что человек, за которым вы осуществляете уход, страдает деменцией? 5. Как добиться помощи? 6. Чему посвящено это руководство? Модуль 1 iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м 2. Что вызывает деменцию? Деменция может быть вызвана рядом заболеваний, которые разрушают нервные клетки и повреждают головной мозг. Болезнь Альцгеймера Болезнь Альцгеймера является наиболее распространенной причиной деменции. Она разрушает клетки и нервы головного мозга, нарушая работу нейромедиаторов, передающих сообщения в мозг, особенно тех, которые отвечают за хранение воспоминаний и краткосрочную память. Болезнь также может разрушить оптико-пространственную функцию мозга, из-за чего человеку будет трудно ориентироваться в окружающей среде. Сосудистая деменция Сосудистая деменция возникает при повреждении кровеносных сосудов, которое, в свою очередь, нарушает снабжение мозга кислородом и, как следствие, вызывает гибель клеток головного мозга. Симптомы сосудистой деменции могут возникать либо внезапно после инсульта, либо с течением времени в результате серии микроинсультов. Сосудистая деменция составляет 20-30% всех случаев деменции. Деменция с тельцами Леви Деменция с тельцами Леви похожа на болезнь Альцгеймера тем, что вызывается ухудшением состояния нервных клеток и последующим их отмиранием в головном мозге. Она получила свое название от аномальных отложений белка – телец Леви – в нервных клетках головного мозга. На её долю может приходиться около 10% всех случаев деменции. Приблизительно у половины людей, живущих с деменцией с тельцами Леви, также развиваются признаки и симптомы болезни Паркинсона. 1. Что такое деменция? Деменция возникает в результате патологического процесса, который с течением времени все больше повреждает головной мозг. Деменция затрагивает людей из любой группы общества и не связана с социальным классом, полом, этнической группой или географическим положением. Деменция не является частью процесса естественного старения. Хотя деменция более распространена среди пожилых людей, более молодые люди также могут быть затронуты этой болезнью. Модуль 1 В в е д е н и е в п о н я ти е « Д е м е н ц и я » iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м 15 Лобно-височная деменция При лобно-височной деменции, включая болезнь Пика, поражение обычно концентрируется в передних отделах головного мозга. При лобно-височной деменции в первую очередь страдают личность и поведение, а затем уже память. Редкие причины деменции Есть много других, более редких причин деменции, таких как деменция, связанная с употреблением алкоголя, или деменция, вызванная ВИЧ/СПИДом. 3. Что происходит с людьми с деменцией по мере развития заболевания? Каждый человек уникален, поэтому деменция по-разному влияет на людей. Никогда два разных человека не будут болеть этой болезнью одинаково, у каждого будут свои специфические проявления и сложности. Влияние деменции на человека определяется не только характером и объемом повреждения головного мозга, но и другими факторами, включающими личность человека, его образ жизни, общее состояние здоровья и функционирования, а также среду обитания. Люди с деменцией часто имеют проблемы с памятью. Выберите правильный ответ  ВЕРНО  НЕВЕРНО 1. Проверьте себя Модуль 1 Что происходит с людьми с деменцией? В в е д е н и е в п о н я ти е « Д е м е н ц и я » iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м 16 На поздней стадии люди с деменцией часто перестают узнавать родственников или друзей, они полностью зависимы от помощи других людей, а также у них проявляются такие изменения в их поведении, которые могут расстраивать и беспокоить как самого человека с деменцией, так и окружающих. Стадии деменции Симптомы деменции могут варьироваться от незначительной потери памяти до серьезных нарушений памяти и мышления, которые делают невозможным выполнение повседневных дел без посторонней помощи. Для понимания болезни может быть полезно рассматривать последовательность стадий развития деменции. Однако важно понимать, что это лишь приблизительное представление о развитии стадий заболевания. Не у каждого человека с деменцией будут проявляться все симптомы, а некоторые из них могут проявляться только на одной из стадий заболевания. На ранней стадии заболевания люди с деменцией могут иметь проблемы с памятью, могут быть дезориентированы во времени, теряться в ранее знакомых местах и испытывать трудности с принятием решений. По мере развития заболевания до средней стадии, люди с деменцией становятся более забывчивыми и начинают нуждаться в помощи при выполнении повседневных дел, таких как поход в магазин, одевание, стирка или оплата счетов. Модуль 1 В в е д е н и е в п о н я ти е « Д е м е н ц и я » iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м 17 1. Упражнение Советs Exercise to improve hearing The ability to hear is important for communication. Check the items below to help improve hearing. • Забывание недавних событий • Повторяющиеся вопросы Да Нет Затрудняется вспомнить, что произошло несколько минут назад? Вот некоторые распространенные изменения, которые могут случиться, если человек страдает деменцией. Считаете ли вы, что член вашей семьи/друг/человек, за которым вы осуществляете уход, испытывает что-либо из перечисленного ниже? Выберите все подходящие варианты Человек, за которым вы осуществляете уход… Примеры Испытывает трудности при выполнении повседневных дел? • Проблемы с распоряжением финансов • Проблемы с совершением покупок • Проблемы с приготовлением обеда Да Нет Затрудняется определить время или место? • Забывание места, даты и времени встречиДа Нет Общается иначе, чем раньше? • Трудности с самовыражением • Сложности с подбором нужных слов Да Нет • Трудности с нахождением простых предметов • Подозрения, что вещи украдены Кладет вещи не на то место? Да Нет • Видимое снижение социальной активности • Отсутствие желания что-либо делать Отдаляется от общества? Да Нет • Резкие перепады настроения • Повышенная тревожность Демонстрирует изменения в личности или в выражении чувств? Да Нет Модуль 1 В в е д е н и е в п о н я ти е « Д е м е н ц и я » iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м Ответ 18 Первые шаги  Позвоните другу или родственнику  Используйте iSupport только для дополнительной помощи  Запишитесь на прием к врачу с членом семьи или другом / Помогите записаться на прием к врачу члену семьи или другу  Выясните, может быть, человек уже обращался к врачу и ему поставлен диагноз 2. Проверьте себя4. Что делать, если вы считаете, что у человека, за которым вы осуществляете уход, деменция? Если вы считаете, что у члена семьи или друга может быть деменция, в первую очередь, следует обратиться к врачу. Врач исследует его состояние здоровья и работу головного мозга. Важно исключить вероятность того, что проблемы с памятью вызваны другими излечимыми состояниями, такими как депрессия, инфекция мочевыводящих путей, переходящая в делирий, побочные эффекты от лекарств, недостаток витаминов или опухоль головного мозга. Важно определить, действительно ли проблемы с памятью человека являются симптомом деменции или это симптомы какой-либо другой болезни. Это может сделать только врач. С помощью данного руководства это определить нельзя. Что делать, если вы считаете, что у человека, за которым вы осуществляете уход, деменция? Что нужно сделать в первую очередь, если вы считаете, что у члена семьи или друга деменция? Пожалуйста, поставьте галочку () напротив тех ответов, которые вы считаете правильными, и крестик () напротив тех, которые неверны Модуль 1 В в е д е н и е в п о н я ти е « Д е м е н ц и я » iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м 19 Помните 5. Как добиться помощи? Важно понимать, что в одиночку вы не сможете обеспечить весь уход, в котором нуждается человек, живущий с деменцией, тем более, что по мере развития болезни ухаживать за ним будет всё сложнее. Поэтому мы рекомендуем вам обратиться за помощью к членам семьи, друзьям и профессиональным организациям или службам помощи людям с деменцией. Во многих странах есть очень полезные специализированные организации и службы. Некоторые из них бесплатны, другие нет. Пожалуйста, свяжитесь с лечащим врачом, специалистами лечебно- профилактических учреждений или обратитесь за помощью в органы здравоохранения и социального обслуживания в вашем регионе для получения информации, поддержки и ухода. Это принесет пользу человеку, за которым вы осуществляете уход, и вам самим. 6. Чему посвящена программа iSupport? В центре внимания вы – лицо, осуществляющее уход за человеком с деменцией. Уход за человеком с деменцией может быть очень сложным. iSupport предоставляет вам полезную информационную помощь, чтобы вы могли справиться с ежедневным уходом за ним. Очень важно, чтобы вы заботились не только о человеке, живущем с деменцией, но и о себе. iSupport покажет, как это можно сделать, и продемонстрирует некоторые распространенные сценарии развития болезни, которые могут происходить с людьми с деменцией, чтобы вы были к ним готовы и могли попрактиковаться в правильной реакции на такие ситуации.  Деменция поражает головной мозг человека  Деменция является распространенным явлением, особенно у пожилых людей  Деменция – это болезнь, а не часть нормального процесса старения  В качестве первого шага важно обратиться к врачу, если это возможно  Вам также важно заботиться и о себе, а не только о человеке, за которым вы осуществляете уход  Если вы – лицо, осуществляющее уход за человеком с деменцией, iSupport может помочь вам Модуль 1 В в е д е н и е в п о н я ти е « Д е м е н ц и я » iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м 20 Отлично, вы закончили данный урок! Модуль 1 В в е д е н и е в п о н я ти е « Д е м е н ц и я » iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м 21 Люди с деменцией часто имеют проблемы с памятью Верно: Это правильный ответ. Неверно: Это неправильный ответ. Правильный ответ: люди с деменцией часто что-то забывают или имеют проблемы с памятью Что делать в первую очередь, если вы считаете, что человек, за которым вы осуществляете уход, страдает деменцией? 1. Проверьте себя Что происходит с людьми с деменцией? 2. Проверьте себя Что делать, если вы считаете, что человек о котором вы заботитесь страдает деменцией? ОТВЕТЫ - Введение в понятие «Деменция» Позвонить другу или родственнику Хотя друзья и семья могут предложить поддержку, это не может заменить медицинский осмотр, проводимый врачом Использовать для помощь только iSupport Хотя программа предоставляет информацию и поддержку, она не может заменить медицинский осмотр, проводимый врачом Записаться на прием к врачу с членом семьи или другом / Помочь записаться на прием к врачу члену семьи или другу Это лучший первый шаг, если вы еще не сделали этого, сделайте его Человек уже обращался к врачу, и ему поставили диагноз «деменция» Вы видите, что человек уже сделал первый важный шаг Модуль 1 О Т В Е Т Ы - В в е д е н и е в п о н я ти е « Д е м е н ц и я » iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м       22 ЧТО ЗНАЧИТ БЫТЬ ЛИЦОМ, ОСУЩЕСТВЛЯЮЩИМ УХОД Урок 1. Совместный путь Урок 2. Улучшение коммуникаций Урок 3. Поддержка принятий решений Урок 4. Привлечение к помощи по уходу других людей 23 Модуль Урок 1. Совместный путь 1. Как ваше участие может меняться со временем? Вы можете чувствовать, что ваша роль и обязанности меняются по мере развития деменции у вашего близкого. На ранних стадиях деменции вы все еще сможете заниматься множеством различных занятий вместе. Но по мере развития заболевания человеку с деменцией будет сложнее справляться с повседневными задачами. Поэтому от лица, осуществляющего уход, потребуется больше помощи в повседневной жизни, например, в приеме лекарств и сопровождении человека на запланированные встречи, а также помощь с выполнением повседневных бытовых дел. На средней и поздней стадиях деменции лицу, осуществляющему уход, будет необходимо делать немного больше. Помощь может включать в себя уходовые процедуры, например, содействие в купании, посещении туалета и одевании. Некоторые задачи для лиц, осуществляющих уход, могут быть сложными и вызывать стресс. У р о к 1 . С о в м е ст н ы й п у ть iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м Модуль 2 Почему этот урок важен? Борьба с деменцией и ее проявлениями – путь, который вы пройдете вместе с близким человеком, потому что деменция меняет повседневную жизнь как человека, живущего с ней, так и лица, осуществляющего уход за ним Каким образом этот урок поможет мне? Этот урок научит вас навыкам совместного преодоления этого пути: поддержанию связи, привлечению к помощи по уходу других людей, заботе о себе и планированию будущего Что я смогу узнать? 1. Как ваше участие может меняться со временем? 2. Как поддерживать связь с человеком, за которым вы осуществляете уход? 3. Как спланировать приятные занятия и отдых? 4. Как привлекать к помощи по уходу других людей? 5. Как правильно спланировать будущее? 24 Рассмотрим пример 1. Проверьте себя Разочарование в связи с потерей памяти У Ольги деменция, и она живет со своим мужем Дмитрием. В последние несколько месяцев у нее участились случаи потери памяти: она ходила по магазинам и не могла вспомнить, что ей необходимо купить. Поэтому Ольга приходила домой не с теми покупками, и это её расстраивало. Как Дмитрию следует реагировать на ситуацию? Отметьте все ответы, которые вы считаете подходящими  Оставить Ольгу одну и посмотреть, что произойдет дальше  Попросить Ольгу, чтобы она более старательно запоминала список покупок  Не позволять Ольге делать покупки  Спросить Ольгу, как она относится к потере памяти  Не винить Ольгу, а каждый раз перед походом в магазин составлять вместе с ней список покупок iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м Модуль 2 У р о к 1 . С о в м е ст н ы й п у ть 25 Совет2. Как поддерживать связь с человеком с деменцией? Важно продолжать разговаривать друг с другом. Чем раньше вы начнете говорить о деменции и её влиянии на вас и человека, за которым вы осуществляете уход, тем лучше. По мере развития заболевания делать это будет все труднее. Поговорите об изменениях, происходящих сейчас, и о том, что может произойти в будущем. Поддерживайте связь друг с другом и обсуждайте изменения, которые могут произойти с течением времени. Вот несколько небольших советов, которые помогут вам лучше общаться с людьми, живущими с деменцией:  Используйте простые предложения  Старайтесь контролировать свои чувства и эмоции по отношению к близкому  Выделяйте время для себя и друг для друга Дополнительные советы о том, как улучшить общение с человеком, живущим с деменцией, в том числе на поздних стадиях заболевания, читайте в данном модуле в Уроке 2. Улучшение коммуникации iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м Модуль 2 У р о к 1 . С о в м е ст н ы й п у ть 26 Забот а о себе очень важна 3. Как спланировать приятные занятия и отдых? По мере развития заболевания оказание помощи может занимать все больше времени. Поэтому иногда лица, осуществляющие уход, не уделяют себе достаточно времени. При этом очень важно стараться как можно больше заботиться о себе, так как стресс и отсутствие отдыха могут сильно влиять на общее самочувствие и состояние здоровья. Часть совместного пути должна включать в себя планирование приятных занятий и отдыха для себя. Дополнительные советы о том, как расслабиться, читайте в Уроке 1. Снижение уровня стресса в повседневной жизни (Модуль 3). Дополнительные советы о том, как контролировать свои чувства и эмоции, читайте в Уроке 3. Думать по-другому (Модуль 3). Дополнительные советы о том, как планировать для себя приятные занятия, читайте в Уроке 2. Выделение времени для приятных занятий (Модуль 3). iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м Модуль 2 У р о к 1 . С о в м е ст н ы й п у ть 27 4. Как привлекать к помощи по уходу других людей? Уход за человеком с деменцией иногда может стать испытанием для дружбы и семейных отношений. Люди, осуществляющие уход, часто чувствуют, что никто не понимает, через что они проходят. В этом случае обсуждение своих мыслей и чувств с другими может помочь вам почувствовать себя лучше. Уход за человеком с деменцией не должен осуществляться только одним человеком. Привлекайте к делу друзей и членов семьи, если вам нужна помощь и перерыв на отдых. Уход за близким человеком, живущим с деменцией, иногда становится слишком тяжелой работой для одного человека. Свекровь Марины, которую зовут Лариса, страдает деменцией. У Марины много дел на работе, и завтра она должна уйти на работу в 7:30 утра. Нанятый помощник по уходу не может прийти до 9:00 утра. То есть Лариса останется дома одна более чем на час. Марина задумывается над вопросом, можно ли оставить Ларису одну, и испытывает стресс, потому что не знает, что делать. 2. Проверьте себя Стресс из-за противоречивых обязанностей Как Марина могла бы поступить в этой ситуации? Отметьте все ответы, которые вы считаете подходящими  Оставить Ларису одну и посмотреть, что произойдет дальше  Попросить соседа/друга навестить Ларису, пока не придет помощник по уходу  Попросить Ларису самостоятельно позаботиться о себе  Попросить мужа пойти на работу позже, чтобы он мог побыть с Ларисой, пока не придет помощник по уходу  Попросить помощника прийти пораньше iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м Модуль 2 У р о к 1 . С о в м е ст н ы й п у ть 28 5. Как правильно спланировать будущее? Подготовка к будущему – это тема, которую будет необходимо обсудить. Вам и человеку, за которым вы осуществляете уход, нужно будет принять решение о его предпочтениях в отношении того, кто может помогать в обеспечении ухода, в отношении финансовых вопросов, а также договориться о его предпочтениях в случае более серьезных нарушений здоровья, требующих специализированного ухода. Многие люди, осуществляющие уход, беспокоятся о будущем. Чем раньше вы его спланируете, тем лучше и проще будем вам в дальнейшем. Заблаговременное планирование также гарантирует, что человек, за которым вы ухаживаете, сможет лучше выразить свои предпочтения. По возможности обсуждайте темы, которые вас волнуют. Вот некоторые распространенные вопросы, которые возникают у лиц, осуществляющих уход. Возможно, вы захотите обсудить это с человеком, о котором заботитесь. Запишите ответы на вопросы. Каковы предпочтения человека в ситуации, когда он больше не сможет самостоятельно ухаживать за собой, например, самостоятельно мыться? Чью помощь он предпочел бы при купании: мужчины или женщины? Как он относится к тому, чтобы его купал близкий член семьи? Или он предпочёл бы, чтобы это делал квалифицированный специалист, не являющийся его родственником? Чем (каким занятием) человек, за которым вы осуществляете уход, хотел бы заниматься как можно дольше? 1. Упражнение iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м Модуль 2 У р о к 1 . С о в м е ст н ы й п у ть 29 1. Упражнение По мере прогрессирования болезни, каковы пожелания человека относительно ухода, который он хотели бы получать? Если вы сочтете это полезным, пожалуйста, запишите вопросы, которые вы, возможно, захотите обсудить, в отведенном ниже месте. Если дома потребуется дополнительная помощь, то какую помощь человек, за которым вы осуществляете уход, предпочел бы сейчас и/или в будущем? iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м Модуль 2 У р о к 1 . С о в м е ст н ы й п у ть 30 Как Дмитрий и Ольга могут поддерживать свою близость, по мере развития заболевания у Ольги? Подумайте об этом, прежде чем читать дальше 2. Упражнение Близкие отношения могут измениться По мере прогрессирования деменции партнеры могут испытать некоторые изменения в близких отношениях между собой. Поначалу сексуальные отношения между партнерами все еще могут быть возможны, но по мере развития заболевания сексуальные отношения и физическая близость могут потребовать большего внимания. Давайте вернемся к примеру с Ольгой и Дмитрием Ольга находится на ранней стадии деменции и живет со своим мужем Дмитрием. Между Ольгой и Дмитрием здоровые близкие отношения, но Дмитрий беспокоится о том, что вскоре из-за развития деменции эти отношения могут прекратиться. iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м Модуль 2 У р о к 1 . С о в м е ст н ы й п у ть 31 Способы оставаться близкими людьми Забота о себе Одна из самых важных вещей, которую следует помнить, заключается в том, что вы как лицо, ухаживающее за человеком с деменцией, также должны заботиться и о себе. В этом руководстве мы дадим советы, как это можно сделать. Вот несколько советов для партнеров о том, как сохранить близость, даже если сексуальные отношения больше невозможны. Совет Напоминание  Используйте прикосновения, держитесь за руки или делайте легкий массаж, чтобы передать тепло, связь, безопасность и любовь  Используйте музыку – это поистине универсальный язык. Включите музыку, которая нравится человеку, за которым вы осуществляете уход, и которая улучшает его настроение  Постарайтесь сохранить чувство юмора. Это поможет снизить напряжение и чувство недовольства  Поговорите с человеком о том, что ему нравится и в чем он нуждается – это важный разговор, который нужно проводить регулярно по мере прогрессирования деменции  Создайте фотоальбом воспоминаний для близкого с деменцией, поместите в него совместные фото с уточняющей подписью и периодически пересматривайте  Позволить себе сделать перерыв для отдыха – это нормально  Попросить о помощи других людей – это нормально  Иногда чувствовать разочарование и усталость – это нормально  Иногда чувствовать себя одиноким, если понимаете, что человек, за которым вы ухаживаете, больше не может осмысленно общаться с вами – это нормально iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м Модуль 2 У р о к 1 . С о в м е ст н ы й п у ть 32 Дополнительные советы о том, как расслабиться, читайте в Уроке 1 в Модуле 3 Отлично, вы закончили данный урок! Краткий обзор того, что вы узнали  Важно поддерживать связь друг с другом во время совместного пути, учитывая изменение ваших ролей  Не забывайте планировать собственные приятные занятия и отдых, чтобы роль ухаживающего человека не стала для вас невыносимой  Обращайтесь за помощью к другим людям, потому что уход за человеком с деменцией может быть утомительным  Убедитесь, что вы хорошо спланировали будущее  Есть много различных способов поддерживать близость и связь друг с другом iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м Модуль 2 У р о к 1 . С о в м е ст н ы й п у ть 33 Спросить Ольгу, как она относится к потере памяти Это удачный ответ, потому что Дмитрий решает проблему, обсуждая ее влияние на Ольгу и при этом поддерживает связь с Ольгой. Дмитрий также мог бы поделиться своими собственными переживаниями по поводу проблем с памятью. Не винить Ольгу, а каждый раз перед походом в магазин составлять вместе с ней список покупок Это очень хороший ответ, потому что это поможет Ольге продолжать делать покупки и сохранять свою независимость как можно дольше. 1. Проверьте себя ОТВЕТЫ – Что значит быть лицом, осуществляющим уход Урок 1. Совместный путь Оставить Ольгу одну и посмотреть, что произойдет дальше Так реагировать бесполезно, потому что это будет нервировать и Ольгу, и Дмитрия. Чтобы поддерживать связь, важно говорить о том, что не нравится и что беспокоит каждого в контексте будущих событий. Попросить Ольгу более старательно запоминать список покупок Это неудачный ответ, потому что потеря памяти – это часть жизни с деменцией, и не стоит ожидать положительных изменений. Не позволять Ольге делать покупки Это неудачный ответ, потому что для Ольги важно делать покупки. Шопинг может дать ей цель в повседневной жизни, сохранить самостоятельность и чувство достоинства. О Т В Е Т Ы – Ч то з н ач и т б ы ть л и ц о м , о су щ е ст в л я ю щ и м у хо д . У р о к 1 Разочарование в связи с потерей памяти Как Дмитрию следует рассказать Ольге о том, что произошло? iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м Модуль 2     34 Стресс из-за противоречивых обязанностей 2. Проверьте себя Как Марина могла бы поступить в этой ситуации? Попросить соседа/друга навестить Ларису, пока не придет помощник по уходу Это правильное решение, потому что обеспечивает безопасность Ларисы. Марина сможет вовремя выйти из дома и выполнить свою работу, а также получит небольшой перерыв в уходе Попросить мужа пойти на работу позже, чтобы он мог побыть с Ларисой, пока не придет помощник по уходу Это удачный ответ. Таким образом Марина пытается привлечь членов своей семьи для помощи и поддержки, а также обеспечивает себе необходимый перерыв в уходе за Ларисой Попросить помощника прийти пораньше Это удачный ответ, но он может быть невыполним из-за слишком поздней просьбы о том, чтобы прийти пораньше. Оставить Ларису одну и посмотреть, что произойдет дальше Это неудачный ответ, потому что это потенциально подвергает Ларису опасности, а Марина будет волноваться за Ларису Попросить Ларису самостоятельно позаботиться о себе Это неудачный ответ, потому что зависимость Ларисы от помощи других является частью жизни с деменцией, и не стоит ожидать положительных изменений в этом вопросе iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м Модуль 2      О Т В Е Т Ы – Ч то з н ач и т б ы ть л и ц о м , о су щ е ст в л я ю щ и м у хо д . У р о к 1 35 1. Как улучшить общение? В этом уроке вы узнаете о способах и инструментах для обеспечения хорошего общения между вами и человеком, за которым вы ухаживаете. Деменция часто может затруднять общение. Это может повлиять на ваши отношения с человеком, уход за которым вы осуществляете, а также расстроить, огорчить или разозлить вас или вашего близкого. Общаясь с человеком, уход за которым вы осуществляете, например, разговаривая с ним или обнимая его, убедитесь, что он понимает, что вы имеете в виду, выполняя такое действие, а также, что вы тоже понимаете его. Урок 2. Улучшение коммуникаций У р о к 2 . У л у чш е н и е к о м м у н и к ац и й iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м Модуль 2 Почему этот урок важен? Деменция часто может затруднять общение между людьми Каким образом этот урок поможет мне? Этот урок поможет вам говорить с вашим подопечным о важных вещах просто и прямо, а также научит проявлять сочувствие к нему в повседневных ситуациях Что я смогу узнать? 1. Как улучшить общение? 2. Как проверить способность человека слышать и видеть? 3. Как привлечь внимание человека с деменцией уважительным способом? 4. Как сделать непростые моменты в общении проще? 5. Как относиться к человеку серьезно? 6. Как обращать внимание на реакции? 7. Как делать комплименты? 8. Как проявлять сочувствие? 36 2. Как проверить способность человека слышать и видеть? Для любого вида общения – разговора, прикосновения или жестов - важны такие основы, как способность собеседников видеть и слышать. К сожалению, деменция может ухудшить эти способности человека. Поэтому важно их проверить, а также узнать,можно ли улучшить слух и зрение человека, внеся некоторые изменения в окружающую его обстановку или по результатам медицинских осмотров и лечения. Слушая человека, сопереживайте ему, а также относитесь серьезно с уважением и достоинством, проявляйте интерес, улыбайтесь или обнимайте его. Это очень важно для любого человека, в том числе и для людей с деменцией. В этом уроке мы поможем вам научиться проявлять сопереживание. Далее будут объяснены некоторые важные базовые навыки общения. Представьте на мгновение, что вы страдаете деменцией. Что бы вы хотели, чтобы делали другие люди? Выберите все подходящие варианты  Слушали то, о чем вы говорите  Обсуждали вас за вашей спиной  Улыбались вам  Говорили, что им все безразлично  Говорили, что они любят вас  Обращались с вами, как с ребёнком  Обращались к вам с уважением и достоинством 1. Проверьте себя Представьте, что вы страдаете деменцией iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м Модуль 2 У р о к 2 . У л у чш е н и е к о м м у н и к ац и й 37 1. Упражнение Да Нет Да Нет Достаточно ли цветового контраста? В порядке ли очки? Носит ли человек, живущий с деменцией, очки? Да Нет Да Нет Если человек, живущий с деменцией, не носит очков, но плохо видит, обратитесь к врачу. Если человек, живущий с деменцией, носит очки, проверьте правильность подбора очков, в том числе по остроте зрения, или обратитесь к врачу. Да Нет Упражнение для улучшения зрения Способность видеть важна для общения. Ознакомьтесь с приведенными ниже пунктами, которые помогут улучшить зрение и отметьте верный ответ Нужна ли консультация врача?iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м Модуль 2 В целом людям с деменцией нужно больше света, чтобы лучше видеть. Увеличьте уровень освещенности и по возможности используйте дневной свет. Это поможет человеку, живущему с деменцией, лучше видеть. Вы также можете, например, оставить ночник включенным на ночь, чтобы человек, при необходимости, мог найти туалет Деменция может затруднить распознавание контрастов. Например, если на белом столе стоит белая тарелка, людям с деменцией может быть сложно увидеть тарелку. Помочь улучшить контраст может цветная тарелка или скатерть Часто ли человек, живущий с деменцией, теряет очки или кладет их не на место? Поощряйте его всегда класть очки на одно и то же место, чтобы уменьшить проявление негативных эмоций из-за необходимости их искать. Иногда в этом случае могут помочь шнурки для очков Если человек, живущий с деменцией, носит очки, проверьте, чистые ли они и удобно ли их носить. Удобно ли сидят очки на ушах и переносице? Достаточно ли света? СоветОтветВопрос У р о к 2 . У л у чш е н и е к о м м у н и к ац и й 38 2. Упражнение Минимизация фонового шума поможет улучшить слух. Можно отвести человека, живущего с деменцией, в более тихое место с меньшим количеством отвлекающих факторов. Выключайте телевизор или радио, когда пытаетесь пообщаться с человеком с деменцией Если человек, живущий с деменцией, носит слуховой аппарат, проверьте, чистый ли он, плотно ли он прилегает к ушному каналу, удобно ли его носить и заряжены ли батарейки Да Нет Человек, живущий с деменцией, может забыть надеть слуховой аппарат или ему может требоваться помощь, чтобы правильно его надеть Да Нет Да Нет Да Нет Слишком много шума? Есть ли у человека слуховой аппарат и носит ли он его? Все ли в порядке со слуховым аппаратом? Нужна ли консультация врача? Если человек с деменцией, носит слуховой аппарат, проверьте, актуально ли ношение ранее подобранного аппарата или нужно проконсультироваться с врачом по поводу подбора нового. Если у человека, нет слухового аппарата, но он уже плохо слышит, вам также следует обратиться к врачу Упражнение для улучшения слуха Способность слышать важна для общения. Ознакомьтесь с приведенными ниже пунктами, которые помогут улучшить зрение и отметьте верный ответ iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м Модуль 2 СоветОтветВопрос У р о к 2 . У л у чш е н и е к о м м у н и к ац и й 39 3. Как привлечь внимание человека уважительным способом? Человек, живущий с деменцией — это человек с чувствами, независимо от того, на какой стадии заболевания он находится и насколько серьезны его коммуникативные проблемы. Поэтому важно установление контакта с ним путем привлечения его внимания. Ниже приведены некоторые варианты того, как привлечь внимание человека с деменцией Пожалуйста, поставьте галочку() напротив тех ответов, которые вы считаете правильными, и крестик () напротив тех, которые неверны  Повысить голос или закричать  Говорить четко и медленно, с комфортной для человека громкостью, лицом к лицу на уровне глаз  Коснуться ладони, предплечья или передней части плеча  Остановить и удерживать человека, чтобы заставить его слушать  Подойти к человеку со спины и дотронуться до его плеча  Называть человека именем, которое он узнает 2. Проверьте себя Привлекайте внимание уважительным способом  Привлечение внимания – первый важный шаг для хорошей коммуникации  Существуют различные способы уважительного привлечения внимания человека с деменцией Запомните iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м Модуль 2 У р о к 2 . У л у чш е н и е к о м м у н и к ац и й 40  Следует спрашивать или рассказывать человеку с деменцией по одной мысли или вопросу за один раз  Стоит использовать простой язык и делать предложения короткими. Избегайте использования длинных и сложных предложений, сосредоточьтесь на одном вопросе или мысли за раз.  При необходимости переходите от открытых вопросов к закрытым – это вопросы, на которые можно ответить ДА или НЕТ  Важно убедиться, что рядом нет отвлекающих фоновых шумов, таких как телевизор или радио  Не будьте слишком критичными: подсказывайте, поддерживайте и чаще хвалите. Человек имеет право на ошибку. 4. Как сделать сложные моменты в общении проще? Часто язык, которым мы пользуемся, чтобы передать сообщение, слишком сложен. Простой язык поможет человеку, за которым вы осуществляете уход, лучше понять вас. Помните 3. Проверьте себя Чем проще, тем лучше Евгений заботится о своем отце, живущем с деменцией. Евгений стал замечать, что отец его не понимает. Вы можете сказать, почему? Отметьте в списке ниже пункты, которые, по вашему мнению, могут помешать общению между Евгением и его отцом  Работает радио  Евгений разговаривает по телефону  Евгений одновременно задает несколько вопросов iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м Модуль 2 У р о к 2 . У л у чш е н и е к о м м у н и к ац и й 41 5. Как относиться к человеку серьезно? В какой-то момент вы можете не понять, что имеет в виду человек, за которым вы осуществляете уход. Используемый этим человеком язык может даже показаться странным или смешным. Однако, несмотря на это, важно относиться к человеку серьезно, ведь он пытается вам что-то сказать, хотя его коммуникативные навыки могут быть нарушены из-за деменции. iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м Модуль 2 У р о к 2 . У л у чш е н и е к о м м у н и к ац и й 42 Рассмотрим пример Евгений навещает своего отца, живущего с деменцией. Когда его отец хочет описать свое утро, он не может подобрать нужных слов. Евгений говорит жене в присутствии отца: «Я не понимаю, что он имеет в виду!» Его жена отвечает: «Да, я тоже не понимаю. Он совсем как ребенок!» Какие из следующих высказываний вы считаете правильными? Отметьте все ответы, которые вы считаете подходящими  Евгению не следует говорить о своем отце, когда тот находится в той же комнате. Евгений мог бы сказать: «Папа, мне трудно понять, что ты имеешь в виду». Кроме того, он мог бы задать некоторые уточняющие вопросы, на которые его отец мог бы ответить «ДА» или «НЕТ». Например: «Ты выходил сегодня утром на улицу?»  Евгений и его жена могли бы проявить больше терпения  Евгений и его жена могут попытаться угадать, что хочет сказать отец  Важно, что Евгений и его жена говорят о том, что им трудно понять отца Евгения, в его присутствии  Его жена права: человек, живущий с деменцией, похож на ребенка 4. Проверьте себя Относитесь к человеку серьезно  Важно серьезно воспринимать человека, о котором вы заботитесь, и относиться к нему с уважением и достоинством  Не говорите о человеке в его присутствии  Наберитесь терпения и дайте человеку время, чтобы подобрать нужные слова  Когда человека, за котором вы ухаживаете, трудно понять, полезно задавать закрытые вопросы, на которые можно ответить «ДА» или «НЕТ», чтобы лучше понять, что он имеет в виду Запомните iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м Модуль 2 У р о к 2 . У л у чш е н и е к о м м у н и к ац и й 43 Посмотрите на картинки ниже. Какие чувства изображены? Выберите правильный ответ для каждой картинки 6. Как обращать внимание на реакции? Можно многое понять по тому, как человек говорит и смотрит. Например, если он улыбается, можно предположить, что у этого человека хорошее настроение. Это поможет вам в общении с человеком, за которым вы осуществляете уход. Довольный (-ая) Злой (-ая) Печальный (-ая) Испуганный (-ая)  Выражение лица и язык тела могут сказать о том, что чувствует человек. Такие примеры языка тела как ерзание, скрещивание рук, или хождение взад- вперед могут сказать о том, что человек нервничает, чем-то обеспокоен или расстроен  Обратите внимание на реакции и язык тела человека, за которым вы осуществляете уход5. Проверьте себя Обращайте внимание на реакции Помните Довольный (-ая) Злой (-ая) Печальный (-ая) Испуганный (-ая) Довольный (-ая) Злой (-ая) Печальный (-ая) Испуганный (-ая) Довольный (-ая) Злой (-ая) Печальный (-ая) Испуганный (-ая) iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м Модуль 2 У р о к 2 . У л у чш е н и е к о м м у н и к ац и й 44 Ниже приведен список высказываний  Ты выглядишь прекрасно  Ты хорошо умеешь...  Что ты делаешь?! Перестань!  Ты очень помогаешь. Спасибо  Ты устраиваешь беспорядок  Тебе должно быть стыдно, что ты все забыл  Мне нравится, когда ты рядом  Ты сводишь меня с ума  У тебя великолепная улыбка  Человек, за которым вы осуществляете уход, почувствует себя хорошо, если вы скажете что-то хорошее  Комплименты можно делать разными способами  Если говорить что-то негативное, то это может привести к тому, что человек почувствует себя плохо Помните 6. Проверьте себя Делайте комплименты 7. Как делать комплименты? Делать комплименты человеку, за которым вы осуществляете уход, очень важно. Гораздо эффективнее сказать, что он делает что-то хорошо, чем говорить, что он делает неправильно. Комплимент может отличаться от комментария о том, что он сделал что-то хорошо, до слов о том, что он хорошо выглядит. Делать комплименты можно разными способами и в разных ситуациях. Эти высказывания включают в себя несколько комплиментов. Однако есть и такие высказывания, которые не являются комплиментами. Пожалуйста, поставьте галочку( ) напротив тех ответов, которые вы считаете правильными, и крестик ( ) напротив тех, которые неверны Высказывания iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м Модуль 2 У р о к 2 . У л у чш е н и е к о м м у н и к ац и й 45 Подумайте о том, что вам нравится в человеке, за которым вы осуществляете уход. А теперь попробуйте записать то, что бы вы сказали, чтобы сделать ему комплимент 3. Упражнение iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м Модуль 2 У р о к 2 . У л у чш е н и е к о м м у н и к ац и й 46 Рассмотрим пример Даниил часто навещает свою сестру Елену с деменцией. Муж Елены скончался полгода назад. Когда Даниил приезжает в гости, Елена часто спрашивает, где ее муж. Даниилу трудно с этим справляться. Он знает, что сестра скучает по мужу и, возможно, забыла, что он умер. Даниил пытается отвлечь ее, задавая вопросы на другие темы, например: «Как прошел твой день?», но Елена продолжает спрашивать, где ее муж. Сегодня Даниил пробует другой подход Даниил говорит Елене: «Тебе должно быть тяжело, что он умер». Он обнимает сестру, показывает ей несколько фотографий мужа, которые он принес из дома, и рассказывает о нем. Даниил показал, что понимает, что Елена скучает по мужу, и пытается ее поддержать. Хорошо ли повел себя Даниил? Пожалуйста, выберите правильный ответ Да Нет Хорошо ли повел себя Даниил? Пожалуйста, выберите правильный ответ Да Нет 7. Проверьте себя Как проявлять сочувствие (1) 8. Проверьте себя Как проявлять сочувствие (2) 8. Как проявлять сочувствие? Важно, чтобы вы проявляли сочувствие, даже если человек с деменцией снова и снова повторяет одни и те же вопросы или вам становится все труднее понимать друг друга. Вы должны помнить, что деменция – это синдром, который может затруднить общение. Например, человек с деменцией может забыть, что он только что сказал. В этом случае вам нужно приложить дополнительные усилия и проявить терпение по отношению к нему. iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м Модуль 2 У р о к 2 . У л у чш е н и е к о м м у н и к ац и й 47 Отлично, вы закончили данный урок! Краткий обзор того, что вы узнали Вы отработали следующие коммуникативные навыки и научились:  Проверять способность слышать и видеть  Привлекать внимание уважительным способом  Упрощать свою речь  Относиться к человеку серьезно и с уважением  Обращать внимание на реакции  Делать комплименты  Проявлять сочувствие Учитывайте, что люди с деменцией также имеют право оплакивать потерю близкого человека в безопасной и комфортной обстановке. На примере Даниила и его сестры Елены видно, что:  Вы можете проявлять сочувствие по-разному  Важно серьезно относиться к человеку с деменцией и обращать внимание на вопросы, которые у него возникают  Проявление сочувствия помогает улучшить ваши отношения с человеком, за которым вы осуществляете уход iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м Модуль 2 У р о к 2 . У л у чш е н и е к о м м у н и к ац и й 48 ОТВЕТЫ – Что значит быть лицом, осуществляющим уход Урок 2. Улучшение коммуникацииs 1. Проверьте себя Представьте, что вы живете с деменцией Слушали то, что вы говорите Обсуждали вас за вашей спиной Улыбались вам Говорили, что им безразлично Говорили, что они любят вас Обращались с вами, как с ребёнком Подходили к вам с уважением и достоинством О Т В Е Т Ы – Ч то з н ач и т б ы ть л и ц о м , о су щ е ст в л я ю щ и м у хо д . У р о к 2 Модуль 2 Что бы вы хотели, чтобы делали другие люди?        49 iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м Привлекайте внимание уважительным способом 2. Проверьте себя Ниже приведены некоторые рекомендуемые способы привлечь внимание человека, живущего с деменцией. Какие ответы правильные, а какие - неправильные? Повысить голос или закричать Повышение голоса – неуважительный способ привлечь внимание. Это может заставить человека, живущего с деменцией, почувствовать грусть, разочарование или гнев. Говорить четко и медленно, с комфортной для человека громкостью, лицом к лицу и на уровне глаз Это подходящий способ установить контакт. Он показывает, что вы ищете контакта в уважительной манере. Коснуться ладони, предплечья или передней части плеча Это хороший способ привлечь внимание человека с деменцией. Остановить и удерживать человека, чтобы заставить его слушать Это не является уважительным способом привлечь внимание. Это может вызвать у человека с деменцией чувство беспокойства или злости. Подойти к человеку со спины и дотронуться до его плеча Это может напугать того, кто не ожидает вас или, возможно, не слышит, как вы приближаетесь. Называть человека, живущего с деменцией, именем, которое он/она узнает Это хороший способ привлечь внимание. Вы можете использовать его имя или прозвище, которое использовалось в прошлом. О Т В Е Т Ы – Ч то з н ач и т б ы ть л и ц о м , о су щ е ст в л я ю щ и м у хо д . У р о к 2 Модуль 2      50 iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м Работает радио Правильно! Радио может сильно отвлекать внимание. Это затрудняет понимание того, что говорит кто-то другой. К тому же, это особенно непросто для людей с деменцией, которые могут испытывать трудности с концентрацией внимания. Евгений разговаривает по телефону Очень хорошо! При звонке по телефону он не проявляет интереса и этим сбивает отца с толку. Людям с деменцией важно пытаться сосредоточиться на одной задаче. После телефонного звонка отцу будет сложно вернуться к той же теме. Евгений одновременно задает несколько вопросов Верно! Когда он задает слишком много вопросов одновременно, отцу становится трудно его понять. 3. Проверьте себя Чем проще, тем лучше Какие из следующих высказываний вы считаете правильными? 4. Проверьте себя Обращайте внимания на реакции Евгению не следует говорить о своем отце, когда он находится в той же комнате. Он мог бы сказать: «Мне трудно понять, что ты имеешь в виду». Кроме того, он мог бы задать некоторые вопросы, на которые его отец мог бы ответить «ДА» или «НЕТ». Например: «Ты выходил сегодня утром на улицу?» Верно! Евгений серьезно относится к отцу, когда пытается понять, что тот хочет сказать. Также не говорите с другими людьми о человеке, за которым вы ухаживаете, пока он находится в одной комнате с вами. Евгений и его жена могли бы проявить больше терпения Верно! Людям с деменцией требуется больше времени, чтобы подобрать нужные слова, и нужно время и терпение, чтобы понять их. Евгений и его жена могут попытаться угадать, что отец хочет сказать Это правильный ответ, потому что некоторые люди с деменцией ценят помощь в подборе правильных слов или составлении предложений. Евгений заботится о своем отце, живущем с деменцией. Евгений стал замечать, что отец его не понимает. Вы можете сказать, почему? О Т В Е Т Ы – Ч то з н ач и т б ы ть л и ц о м , о су щ е ст в л я ю щ и м у хо д . У р о к 2 Модуль 2       51 iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м Посмотрите на картинке ниже. Какие чувства изображены? Выберите правильный ответ ниже 5. Проверьте себя Обращайте внимание на реакции Ты выглядишь прекрасно Ты хорошо умеешь... Что ты делаешь?! Перестань! Ты очень помогаешь. Спасибо Ты устраиваешь беспорядок Тебе должно быть стыдно, что ты все забыл Мне нравится, когда ты рядом Ты сводишь меня с ума У тебя великолепная улыбка 6. Проверьте себя Делайте комплименты О Т В Е Т Ы – Ч то з н ач и т б ы ть л и ц о м , о су щ е ст в л я ю щ и м у хо д . У р о к 2 Модуль 2  Довольный (-ая) Злой (-ая) Печальный (-ая) Испуганный (-ая) Довольный (-ая)  Злой (-ая) Печальный (-ая) Испуганный (-ая) Довольный (-ая) Злой (-ая) Печальный (-ая)  Испуганный (-ая) Довольный (-ая) Злой (-ая)  Печальный (-ая) Испуганный (-ая)          52 iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м Как проявлять сочувствие (1) 8. Проверьте себя 7. Проверьте себя Как проявлять сочувствие (2) Хорошо ли Даниил ответил во втором примере?  Да Важно попробовать разные варианты ответа, чтобы определить тот, который вызовет меньший дискомфорт. Сначала Даниил безуспешно пытался отвлечь сестру. Сегодня, показав сестре фотографии ее мужа, он смог поддержать теплую беседу о нем. Хорошо ли Даниил ответил в первом примере?  Нет Даниил хочет отвлечь внимание сестры, потому что знает, что она скучает по мужу, и ей станет грустно, если напомнить, что он умер. Хотя у Даниила самые лучшие намерения, игнорировать ее вопросы – неправильный способ, особенно потому, что его сестра их настойчиво задает. О Т В Е Т Ы – Ч то з н ач и т б ы ть л и ц о м , о су щ е ст в л я ю щ и м у хо д . У р о к 2 Модуль 2 53 iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м Урок 3. Поддержка в принятии решений 1. Почему необходима поддержка в принятии решений? Очень важно поддерживать человека с деменцией, помогая ему принимать решения самостоятельно. Как и все остальные, люди с деменцией имеют право участвовать во всех решениях, влияющих на их жизнь и благополучие. Однако принятие ими решений может быть затруднено из-за развития заболевания. Иногда это приводит к тому, что родственники полностью берут на себя принятие решений, вместо того, чтобы помогать людям с деменцией принимать решения самостоятельно. В этом уроке вы узнаете, как вы можете поддержать человека, за которым осуществляете уход, когда ему необходимо принять решение. У р о к 3 . П о д д е р ж к а в п р и н я ти и р е ш е н и й iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м Модуль 2 Почему этот урок важен? Со временем человеку, живущему с деменцией, может стать труднее принимать решения. Каким образом этот урок поможет мне? В уроке даны практические советы, как поддерживать человека с деменцией, чтобы он мог самостоятельно принимать решения как можно дольше, или как организовать поддержку в принятии решений, наилучшим образом реализуя интересы человека. Что я смогу узнать? 1. Почему необходима поддержка в принятии решений? 2. Как принимать решения, наилучшим образом реализуя интересы другого человека? 3. Как поддержать человека с деменцией в принятии повседневных решений? 4. Как по мере развития заболевания поддерживать человека с деменцией в принятии повседневных решений? 5. Как поддержать человека с деменцией в принятии сложных решений? 54 Процесс принятия решений может быть непростым Как вы думаете, почему человеку с деменцией может быть трудно принимать решения? Ознакомьтесь с этими причинами ниже, чтобы узнать больше 2. Как принимать решения, наилучшим образом реализуя интересы другого человека? Все люди должны иметь возможность самостоятельно принимать решения. Поскольку человек, за которым вы ухаживаете, страдает деменцией, ваша поддержка необходима, чтобы помочь ему прояснить, чего он хочет. Решения, принятые им в соответствии с его интересами, потребностями и пожеланиями, сделают его более независимым.  Потеря памяти Потеря памяти приводит к тому, что человек с деменцией иногда забывает информацию, необходимую для принятия решения.  Проблемы с мышлением или трудности с определением и описанием того, что думает человек с деменцией Когда у человека с деменцией возникают проблемы с мышлением или выражением того, что он думает, ему может быть труднее принять решение и поделиться им с вами.  Проблемы с принятием сложных решений Сложные решения, например, о том, выходить на улицу одному или нет, могут быть более трудными, поэтому важна ваша поддержка. У р о к 3 . П о д д е р ж к а в п р и н я ти и р е ш е н и й iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м Модуль 2 55 1. Упражнение Подумайте о вашей ситуации  По мере развития заболевания принимать решения становится все труднее.  Человеку, за которым вы осуществляете уход, нужна ваша поддержка, чтобы он мог принимать решения самостоятельно.  Дать ему возможность принимать решения самостоятельно может быть непросто из-за прогрессирования деменции. Поддерживаете ли вы человека, за которым ухаживаете, в принятии решений? Вы можете записать способы, которыми вы поддерживаете его решения: У р о к 3 . П о д д е р ж к а в п р и н я ти и р е ш е н и й iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м Модуль 2 56 3. Как поддержать человека с деменцией в принятии повседневных решений? Важно поощрять человека, за которым вы осуществляете уход, за все, что он еще способен делать. Поддержка в принятии решений поможет ему стать более независимым и повысит самооценку  Важно поощрять человека, за которым вы осуществляете уход, чтобы он продолжал делать то, на что он еще способен  Поддержка человека, за которым вы осуществляете уход, в принятии решений поможет ему стать более независимым  Также ваша поддержка в принятии решений может повысить его самооценку Помните1. Проверьте себя Поддержка в принятии повседневных решений Как, по вашему мнению, было бы правильно помочь Михаилу подготовить чистую одежду, не принимая решения за него? Прежде, чем Мария и Михаил будут ложиться спать, Марии следует спросить Михаила, что он хочет надеть на следующий день. Затем попросить Михаила разложить эту одежду Марии следует выбрать одежду для Михаила и попросить его разложить её Утром Марии следует выбрать одежду для Михаила и отдать ее Михаилу, чтобы он её надел Рассмотрим пример У Михаила болезнь Альцгеймера, он женат на Марии. Михаил всегда вечером выбирал и раскладывал для себя одежду на следующий день. Сейчас у него деменция, поэтому он часто забывает это делать и иногда носит одну и ту же одежду каждый день. У р о к 3 . П о д д е р ж к а в п р и н я ти и р е ш е н и й iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м Модуль 2 57 4. Как поддерживать человека с деменцией в принятии повседневных решений по мере развития заболевания?  Поддерживать человека с деменцией в принятии им решения самостоятельно можно даже тогда, когда деменция прогрессирует  Попробовать упростить принятие решений можно, ограничив количество вариантов или обсудив ситуацию в более подходящее время, когда человек в более хорошем настроении или менее обеспокоен Запомните Вместо того, чтобы поддержать Михаила в выборе одежды накануне вечером, она просит его об этом утром, в начале дня Вечером Мария раскладывает одежду Михаилу Когда Мария спрашивает Михаила, что он хочет надеть, она может дать ему возможность выбрать только несколько вариантов и, например, спросить его, хочет ли он надеть синие или черные брюки Рассмотрим пример Через некоторое время Михаил начинает испытывать стресс, выбирая одежду с Марией на следующий день. Он начинает беспокоиться обо всем, что ему нужно сделать на следующий день, и становится тревожным. Из-за этого Марии трудно поддержать Михаила в принятии решения. 2. Проверьте себя Поддержка принятия решений по мере развития заболевания Что следует сделать Марии? Пожалуйста, отметьте все ответы, которые вы считаете подходящими У р о к 3 . П о д д е р ж к а в п р и н я ти и р е ш е н и й iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м Модуль 2 58 5. Как поддержать человека с деменцией в принятии сложных решений? По мере развития деменции наступает момент, когда человек больше не может принимать сложные решения, например, те, которые касаются лечения. Рассмотрим пример У Екатерины сосудистая деменция, и о ней заботится ее дочь Кристина. Врач советует Екатерине начать принимать лекарства от повышенного артериального давления. Екатерина говорит, что не хочет принимать таблетки, потому что не понимает, зачем они ей нужны и как они могут помочь.  Екатерина сама говорит, что она хочет, поэтому ей не нужна поддержка в принятии решения в том, стоит ли начинать приём лекарств  Врач говорит, что ей следует принимать лекарства, потому что они будут полезны для ее здоровья  Врач объясняет, что прием лекарства полезен для ее здоровья, потому что они снижают артериальное давление и тем самым замедляют дальнейшее развитие деменции и повреждение головного мозга  Её дочь говорит: «Мама, ты знаешь, что ты стала забывчивой и что тебе бывает трудно подобрать нужные слова, когда ты хочешь что-то сказать. При приеме лекарств этих проблем может стать меньше» Что следует сделать врачу и Кристине? Правильными могут быть несколько ответов 3. Проверьте себя Поддержка в принятии сложных решений (1) У р о к 3 . П о д д е р ж к а в п р и н я ти и р е ш е н и й iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м Модуль 2 59 Рассмотрим другой пример Георгий с деменцией живет со своей женой Эллой. Состояние Георгия постепенно ухудшается. Элла решает записаться на прием к врачу без Георгия, чтобы обсудить состояние его здоровья и принять решение относительно приема лекарств. Элла также обсуждает этот вопрос с сестрой Георгия, которая спрашивает ее, какое решение принял бы Георгий до того, как у него диагностировали деменцию. Элла разговаривает с врачом и пытается представить, какое решение принял Георгий, если бы знал всю информацию.  Георгий не в состоянии понять информацию, которая имеет отношение к принятию решения  Георгий не согласен с врачом  Георгий не может сообщить о своем решении (при помощи слов, используя язык телодвижений или иным образом)  Георгий не может использовать или взвешивать информацию в процессе принятия решений Как вы думаете, по каким причинам Георгий больше не может принимать решения самостоятельно? Пожалуйста, отметьте все ответы, которые вы считаете подходящими 4. Проверьте себя Поддержка в принятии сложных решений (2) У р о к 3 . П о д д е р ж к а в п р и н я ти и р е ш е н и й iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м Модуль 2 60 На способность принимать решения могут влиять следующие обстоятельства:  Тип принимаемого решения Некоторые люди с деменцией все еще могут выбирать, какую одежду носить, но, возможно, не могут выбирать, принимать лекарства или нет.  Изменение с течением времени Представьте, что у Георгия есть инфекция, из-за которой он в данный момент сильно растерян. После того, как эта инфекция будет вылечена, он может снова стать способным решить, принимать лекарства или нет.  Трудности с оценкой Если у человека с деменцией нет ясности в вопросе и ему трудно оценить все «за» и «против» данной ситуации, у человека, который ухаживает за ним не остается другого выхода, кроме как принять решение, которое наилучшим образом отвечает интересам его подопечного.  Человек с деменцией при правильной поддержке может быть вовлечен в принятие сложных решений, например, относительно медицинской помощи  Поддержка принятия сложных решений должна быть сосредоточена на предоставлении правильной информации, чтобы помочь человеку, за которым вы осуществляете уход, понять, каковы последствия решения Запомните У р о к 3 . П о д д е р ж к а в п р и н я ти и р е ш е н и й iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м Модуль 2 61 Вы можете принимать решения в интересах человека с деменцией, принимая во внимание следующие аспекты:  Его прошлые и настоящие желания и чувства (и, в частности, любое соответствующее пожелание, высказанное тогда, когда у него еще не было деменции)  Убеждения и ценности, которые были у человека еще до деменции, и которые могли бы сейчас повлиять на его решение  Мнение любого доверенного лица, указанного таковым самим человеком, за которым вы осуществляете уход  Наилучший вариант реализации интересов человека, за которым вы осуществляете уход, не всегда совпадает с вашими собственными интересами или интересами других членов семьи. В конце концов, важны интересы человека, за которым вы осуществляете уход, поскольку решение касается его самого  Текущие желания человека могут отличаться от тех, которые были у него ранее Подготовка к принятию решений Чтобы подготовиться к принятию решений, которые вам, возможно, придется принимать за человека с деменцией, важно:  Собирать информацию, необходимую, чтобы впоследствии сделать осознанный выбор в интересах человека  Обсуждать решения со своей семьей, друзьями, врачом и другими близкими вам людьми, чтобы помочь принять решения, важные для вас и для человека, уход за которым вы осуществляете  Подготовить указания, точно отражающие пожелания человека с деменцией, в соответствии с законодательством страны (заблаговременное распоряжение), и сообщить его врачу о его предпочтениях и решениях относительно лечения Запомните У р о к 3 . П о д д е р ж к а в п р и н я ти и р е ш е н и й iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м Модуль 2 62  Где предпочитает жить человек, за которым вы осуществляете уход, если оставаться дома больше невозможно? 2. Упражнение  Какие аспекты домашнего ухода или ухода в медицинском учреждении важны для человека, уход за которым вы осуществляете?  Кого хочет человек, уход за которым вы осуществляете, видеть ответственным за его финансы, когда он будет больше не в состоянии это делать?  Как человек, уход за которым вы осуществляете, хочет, чтобы с ним обращались в конце его жизни?  Есть ли медицинские процедуры, которые человек, уход за которым вы осуществляете, хочет получать или от которых он отказывается?  Как бы хотел человек, уход за которым вы осуществляете, питаться, когда он больше не сможет принимать пищу? Захочет ли он использовать зонд для кормления?  Есть ли у человека, уход за которым вы осуществляете, какие-либо особые страхи или опасения по поводу лечения? Подумайте о следующем, при подготовке указаний, отражающих пожелания человека, уход за которым вы осуществляете У р о к 3 . П о д д е р ж к а в п р и н я ти и р е ш е н и й iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м Модуль 2 63 Отлично, вы закончили данный урок! У р о к 3 . П о д д е р ж к а в п р и н я ти и р е ш е н и й iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м Модуль 2 64 Как, по вашему мнению, было бы правильно помочь Михаилу подготовить чистую одежду, не принимая решения за него? Это правильный ответ! Таким образом, Михаила поощряют делать то, что он все еще может делать. Марии следует выбрать одежду для Михаила и просить его разложить её Это хороший ответ. Хорошо, что Михаила поощряют за что, что он самостоятельно раскладывает свою одежду; однако было бы лучше, если бы Мария поддержала Михаила в самостоятельном принятии им решения о том, что надеть. Утром Марии следует выбрать одежду для Михаила и отдает ее Михаилу, чтобы он её надел Это не очень хороший вариант. Мария берет все на себя. Было бы лучше, если бы она поддержала Михаила в самостоятельном принятии решения и призвала делать то, что он еще может делать, например, раскладывать одежду. ОТВЕТЫ - Что значит быть лицом, осуществляющим уход Урок 3. Поддержка в принятии решений Как, по вашему мнению, было бы лучше убедиться, что Михаил носит чистую одежду, не принимая при этом решения за него? 1. Проверьте себя Поддержка в принятии повседневных решений   65 О Т В Е Т Ы – Ч то з н ач и т б ы ть л и ц о м , о су щ е ст в л я ю щ и м у хо д . У р о к 3 Модуль 2 iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м 2. Проверьте себя Вместо того, чтобы поддержать вечером Михаила в выборе того, что он хочет надеть на следующий день, она спрашивает его утром Верно! Мария по-прежнему поддерживает Михаила в выборе того, что он хочет надеть, но это не заставляет его волноваться накануне вечером. Вечером Мария раскладывает одежду Михаила Это не очень хороший вариант. Мария решает за Михаила, хотя пока он еще может принимать решения самостоятельно. Когда Мария вечером спрашивает Михаила, что он хочет надеть, она может дать ему несколько вариантов, например, спросить его, хочет ли он надеть свои синие или черные брюки В некоторых случаях это может быть хорошим способом действий. Несмотря на то, что Мария решает, какие брюки надеть Михаилу на следующий день, окончательное решение Михаил может принять сам. Однако в данном случае это может оказаться не лучшим решением, поскольку это может не решить проблему беспокойства Михаила на следующий день. Что следует сделать Марии? Поддержка в принятии решений по мере развития заболевания ОТВЕТЫ - Что значит быть лицом, осуществляющим уход Урок 3. Поддержка в принятии решений   66 О Т В Е Т Ы – Ч то з н ач и т б ы ть л и ц о м , о су щ е ст в л я ю щ и м у хо д . У р о к 3 Модуль 2 iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м Екатерина сама говорит, что она хочет, поэтому ей не нужна поддержка в принятии решения в том, стоит ли начинать приём лекарств Это неправильно. Поскольку у Екатерины деменция, мы не уверены, понимает ли она, зачем ей нужно лекарство и каковы могут быть последствия приема или отказа от приема лекарства. Врач говорит, что ей следует принимать лекарства, потому что они полезны для ее здоровья Неправильно. Хотя лекарство действительно будет полезно для нее, врач говорит Екатерине, что делать, а это уже не очень хорошо. Врач объясняет, что прием лекарств полезен для ее здоровья, потому что они снижают артериальное давление и тем самым замедляют дальнейшее развитие деменции и повреждение головного мозга Правильно! Объяснение врача позволяет Екатерине понять важность приема лекарства и принять обоснованное решение. Её дочь говорит: «Мама, ты знаешь, что у тебя проблемы с памятью и что тебе трудно подобрать нужные слова, когда ты хочешь что-то сказать. При приеме лекарств эти проблемы могут стать меньше» Верно! Использование разных слов для объяснения возможных причин приема лекарства может помочь Екатерине понять, почему прием лекарства принесет ей пользу. Что следует сделать доктору и Кристине? 3. Проверьте себя Поддержка в принятии сложных решений (1) ОТВЕТЫ - Что значит быть лицом, осуществляющим уход Урок 3. Поддержка в принятии решений     67 О Т В Е Т Ы – Ч то з н ач и т б ы ть л и ц о м , о су щ е ст в л я ю щ и м у хо д . У р о к 3 Модуль 2 iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м Как вы думаете, по каким причинам Георгий больше не может принимать решения самостоятельно? Георгий не в состоянии понять информацию, которая имеет отношение к принятию решения Георгий не согласен с врачом Георгий не может сообщить о своем решении (при помощи слов, используя язык телодвижений или любые другие средства) Георгий не может использовать или взвешивать информацию в процессе принятия решений ОТВЕТЫ - Что значит быть лицом, осуществляющим уход Урок 3. Поддержка в принятии решений 4. Проверьте себя Поддержка в принятии сложных решений (2)     68 О Т В Е Т Ы – Ч то з н ач и т б ы ть л и ц о м , о су щ е ст в л я ю щ и м у хо д . У р о к 3 Модуль 2 iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м Урок 4. Привлечение к помощи других лиц 1. Важность вовлечение семьи и друзей в уход за человеком с деменцией Может быть трудно привлечь других людей к уходу за человеком с деменцией. Вы можете подумать, что другие не смогут обеспечить уход так же хорошо, как вы, что у них нет времени или они могут отказать, когда их попросят о помощи. Со временем человек, за которым вы осуществляете уход, будет нуждаться во все большей помощи в повседневных делах. Поэтому важно привлекать к уходу других людей, чтобы можно было разделить задачи и обязанности. Кроме непосредственной помощи, полезно просто поговорить с человеком, который понимает вашу ситуацию и ваши чувства. Не ждите слишком долго, так как помощь других людей на раннем этапе позволит вам продолжать заботиться о члене семьи или знакомом в долгосрочной перспективе. У р о к 4 . П р и в л е че н и е к п о м о щ и д р у ги х л и ц iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м Модуль 2 Почему этот урок важен? Разделение с другими людьми обязанностей по уходу поможет вам продолжать обеспечивать уход более длительное время Каким образом этот урок поможет мне? Посредством тренировки умения просить о помощи Что я смогу узнать? 1. Важность вовлечения семьи и друзей в уход за человеком с деменцией 2. Виды помощи и поддержки, которые могут вам понадобиться 3. Эффективное обращение за помощью к другим 69 2. Виды помощи и поддержки, которые могут вам понадобиться Сначала давайте рассмотрим пример, чтобы узнать, получают ли Лия, Денис и Зарина помощь, и если да, то какую  Лия ухаживает за своей матерью с деменцией. Она не получает помощи от других людей. Она проводит много времени, заботясь о своей матери, и довольно утомлена этим. Ей хотелось бы получить какую-нибудь помощь от других  Денис ухаживает за своей женой с деменцией. Денис привлек к уходу двух своих сестер. Они регулярно ходят с его женой за покупками или помогают убираться в доме  Зарина заботится о своем муже с деменцией. Зарина получает помощь от своей семьи, друзей и соседей. Одни помогают с покупками или уборкой дома, другие ходят с ее мужем на прогулки или просто готовы выслушать её  Друзья: Руслан всегда готов выслушать меня, когда мне это необходимо Ниже представлены виды помощи и поддержки, которые получает Зарина Практическая помощь  Семья: раз в месяц моя сестра помогает с уборкой дома  Друзья: раз в неделю приходит моя подруга Алия, чтобы помочь с покупками и приготовлением пищи  Семья: члены семьи регулярно ходят с мужем на прогулки Помощь в приятных занятиях Эмоциональная поддержка Предоставление информации  Знакомые/соседи: мои соседи помогают найти больше информации о деменции У р о к 4 . П р и в л е че н и е к п о м о щ и д р у ги х л и ц iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м Модуль 2 70 Какую помощь вы получаете? Пожалуйста, ниже запишите, какую помощь от других людей получаете вы. Если помощь, которую вы получаете, не подходит под указанные категории, используйте поле «Другая помощь» для записи своего ответа. Предоставляют ли ваша семья, друзья, соседи или другие лица: Эмоциональную помощь? Помощь в приятных занятиях и отдыхе? 1. Упражнение Практическую помощь? У р о к 4 . П р и в л е че н и е к п о м о щ и д р у ги х л и ц iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м Модуль 2 71 Другие виды помощи? Помните, что совместное выполнение задач по уходу является обычным делом. Делегирование может позволить вам порадовать себя чем-то приятным, заняться своими делами без необходимости брать с собой человека, за которым вы осуществляете уход, или просто насладиться заслуженный отдыхом Информационную помощь? 1. Упражнение Совет У р о к 4 . П р и в л е че н и е к п о м о щ и д р у ги х л и ц iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м Модуль 2 72 Ваша собственная сеть поддержки Взгляните на свою собственную сеть поддержки, указанную на предыдущих страницах, что вы видите? Выберите ответ, который максимально точно описывает вашу ситуацию. 2. Упражнение  Я получаю помощь одной категории Очень хорошо, что вы уже привлекаете других людей к помощи. Возможно, вам необходима дополнительная помощь от других людей. Подумайте о том, кто бы это мог сделать.  Я получаю помощь нескольких категорий Очень хорошо, что вы уже привлекаете других к заботе о члене семьи или знакомых. При необходимости вы также можете обратиться за помощью к другим людям. Возможно, те примеры оказания помощи, о которых вы прочитали на предыдущих страницах, поспособствовали тому, что вы вспомнили о людях, готовых вам помочь.  Я не получаю помощи Помните, что обеспечение ухода может быть долгим и трудоемким процессом. Подумайте о том, как привлечь других людей к совместному выполнению задач. Помните, что вы не узнаете, хотят ли и могут ли люди вам помочь, если вы не попросите их об этом. Вам может быть трудно найти помощь, если поблизости нет семьи или вы живете в сельской или отдаленной местности, или если ваша семья отказывается помочь. Подумайте об альтернативах, таких как обращение к местным службам и обществам, группам поддержки, к врачу. У р о к 4 . П р и в л е че н и е к п о м о щ и д р у ги х л и ц iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м Модуль 2 73 Какую дополнительную помощь вы хотели бы получать? Прежде чем просить кого-то о помощи, важно понять, о чем вы хотели бы попросить. Составьте список желаний по вашим потребностям. Давайте сначала посмотрим на Лию, Дениса и Зарину. Ознакомиться с их списками желаний вы можете ниже. Ур о к 4 . П р и в л е че н и е к п о м о щ и д р у ги х л и ц iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м Модуль 2 74 3. Упражнение Что находится в вашем списке пожеланий помощи? Составьте свой собственный список пожеланий относительно помощи или поддержки, которую вы хотели бы получить Пожелания могут быть, например, такими:  Я хотел бы получить помощь с мытьем человека, за которым осуществляю уход  Я хотел бы получить совет о том, как вести себя с человеком, за которым осуществляю уход  Я хотел бы, чтобы мне помогли адаптировать дом с учетом потребностей человека, за которым ухаживаю Перечислите те пожелания, которые, по вашему мнению, достижимы. Если вы заранее знаете, что вам не удастся достичь желаемого результата, возможно, будет лучше написать другое желание, которое более достижимо. Например, Лия предпочла бы нанимать кого-нибудь для уборки дома каждую неделю. Однако Лия не может себе этого позволить и понимает, что ее желание нереалистично. Она могла бы нанять кого-нибудь для уборки дома раз в две недели или попросить кого-то, кому не нужно платить, например, друга или родственника. Она может попросить человека убрать весь дом или помочь с конкретными трудными для нее задачами, например, с мытьем полов. Составьте список пожеланий, которые кажутся достижимыми Пожелание 1 У р о к 4 . П р и в л е че н и е к п о м о щ и д р у ги х л и ц iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м Модуль 2 Пожелание 2 Пожелание 3 75 К кому я могу обратиться за помощью? Теперь пришло время подумать о том, кто мог бы помочь. Некоторые люди без проблем обращаются за помощью, другие люди не привыкли к этому, им трудно просить о помощи, но попробовать никогда не поздно. Следующий раздел научит вас навыкам эффективного обращения за помощью. Помните о своем списке пожеланий поддержки. 3. Эффективное обращение за помощью к другим Если вы хотите попросить других о помощи, важно сделать это эффективным способом. Это означает, что вы должны иметь возможность открыто говорить с другими о своих мыслях, чувствах и переживаниях. Также это означает, что вы должны уметь постоять за себя. Вещи, которые помогут вам эффективно просить о помощи:  Подумайте о том, чего вы хотите или в чем нуждаетесь, и о том, что вы чувствуете по поводу текущей ситуации  Опишите свою проблему одним-двумя предложениями  Четко опишите свои мысли и чувства, чтобы другой человек мог понять вашу точку зрения  Будьте честными и прямолинейными  Учитывайте восприятие другого человека  Предоставьте подробную информацию о том, какая помощь вам нужна  Будьте гибкими: возможно, вы получите не совсем то, о чем просили, но в любом случае что-то полезное  Разбейте желание на более мелкие составные части: обычно людям легче ответить «да» на маленькую просьбу, чем на большую  Если вы дошли до того, что не знаете, что делать, чтобы убедить ваших близких вам помочь, сделайте перерыв – вернитесь к обсуждению вопроса чуть позже. Например, согласитесь подумать об этом и снова поговорить завтра днем  Если это целесообразно, предложите сначала выполнить задачу вместе  Не сдавайтесь. Может потребоваться много попыток, прежде чем что-то изменится  Просьба о помощи не всегда приводит к желаемому результату, но важно, чтобы вы могли просить о ней У р о к 4 . П р и в л е че н и е к п о м о щ и д р у ги х л и ц iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м Модуль 2 76  Лия говорит сестре, что готова заботиться о матери, но хотела бы взять небольшой перерыв в уходе в течение недели. Она говорит: «Я хотела бы обсудить, как вы могли бы помочь, чтобы вам это тоже было удобно» 1. Проверьте себя Давайте еще раз посмотрим на Лию Она знает, к кому обратиться за помощью, и решает попросить об этом сестру. Лия хотела бы раз в неделю иметь свободный вечер. Она пытается попросить о помощи тремя разными способами  Лия решила посещать еженедельные часовые лекции по вечерам, чтобы отдохнуть от ухода за мамой. Однако она не обсудила с сестрой важность для нее этого перерыва. Когда она попросила свою сестру позаботиться об их матери в течение того времени, что она будет на лекции, ее сестра сказала: «Извини, у меня нет времени». Лия отменяет свои занятия.  Лия подходит к сестре и говорит: «Мне надоело, что ты не помогаешь мне! У тебя никогда нет времени, чтобы помочь мне заботиться о нашей матери!» Какой из следующих примеров представляет собой эффективный способ просьбы о помощи? Пожалуйста, отметьте один ответ, который вы считаете правильным Просить о помощи эффективно У р о к 4 . П р и в л е че н и е к п о м о щ и д р у ги х л и ц iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м Модуль 2 77 Ваш план привлечения к помощи по уходу других людей Составьте свой план по привлечению других людей к уходу за членом вашей семьи или знакомым с деменцией. Подумайте о своих желаниях и о том, к кому вы можете обратиться за помощью. Представьте себя в ситуации, в которой вы просите помощи. Пожалуйста, ответьте на следующие вопросы в ячейках ниже Что бы вы хотели сказать этому человеку? Что бы вы сделали, если бы человек захотел помочь? 4. Упражнение Кого бы вы хотели попросить о помощи? Что бы вы сделали, если бы человек НЕ захотел вам помочь? У р о к 4 . П р и в л е че н и е к п о м о щ и д р у ги х л и ц iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м Модуль 2 78 Отлично, вы закончили данный урок! У р о к 4 . П р и в л е че н и е к п о м о щ и д р у ги х л и ц iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м Модуль 2 79 1. Проверьте себя Пример 1 Эффективный. Это эффективный способ попросить о помощи. Лия отстаивает свои интересы, говорит, что думает, и честно признается, что ей нужен регулярный перерыв. При этом она также помнит об интересах своей сестры. Пример 2 Пассивный. Это не очень эффективный способ попросить о помощи. Сестра может не понимать, что Лия очень устала. Лия не признается в своих чувствах и пытается избежать конфликта с сестрой. Она не может постоять за себя. Это пассивный способ попросить о помощи. ОТВЕТЫ - Что значит быть лицом, осуществляющим уход Урок 4. Привлечение к помощи других лиц Какой из приведенных примеров является эффективным способом просить о помощи? Пример 3 Агрессивный. Это не очень эффективный способ попросить о помощи. Лия злится. Однако ее сестра может не знать, что Лия устала, потому что она не упомянула об этом. Такой подход к сестре неуважителен. Просить о помощи эффективно   О Т В Е Т Ы – Ч то з н ач и т б ы ть л и ц о м , о су щ е ст в л я ю щ и м у хо д . У р о к 4 Модуль 2 iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м 80 ЗАБОТА ОБО МНЕ Урок 1. Снижение уровня стресса в повседневной жизни Урок 2. Выделение времени для приятных занятий и отдыха Урок 3. Умение думать по-другому Модуль Урок 1. Снижение уровня стресса в повседневной жизни У р о к 1 . С н и ж е н и е у р о в н я с тр е сс а в п о в се д н е в н о й ж и зн и iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м Модуль 3 Почему этот урок важен? При уходе за другим человеком важно заботиться и о себе. Этот урок поможет вам продолжать заботиться о себе. Каким образом этот урок поможет мне? Этот урок поможет снизить стресс и восстановить силы с помощью упражнений, которые не занимают много времени Что я смогу узнать? 1. Важность расслабления 2. Разные способы расслабления:  базовое дыхание  осознанное дыхание  движения шеей  подсчёт чисел  создание мысленного образа  общая растяжка  расслабление мышц 3. Как достичь расслабления в любое время и в любом месте 82 1. Важность расслабления Рассмотрим пример Диана: нет ни времени, ни сил Диана заботится о своем муже Олеге, живущем с деменцией. Она чувствует себя все более напряженной. Подруга советует ей постараться расслабиться и не требовать от себя слишком многого. Диана отвечает подруге, что у нее нет ни времени, ни сил, чтобы расслабиться и отдохнуть. Ее подруга объясняет, что есть способы расслабиться, которые не занимают много времени, и что расслабление может дать Диане новые силы, которые помогут ей легче выполнять задачи по уходу. Диане удается расслабиться Диана решает последовать совету своей подруги и пробует дыхательное упражнение, которое ей показала подруга. Когда Диана снова видит свою подругу, она говорит: «Спасибо за хороший совет. Хотя у меня еще много дел, я чувствую себя менее напряженной». Диана решает делать дыхательные упражнения каждый раз, когда чувствует напряжение. Расслабление:  Делает вас менее напряженным  Может придать новые силы  Может облегчить выполнение задач и обязанностей  Не занимает много времени Напоминание У р о к 1 . С н и ж е н и е у р о в н я с тр е сс а в п о в се д н е в н о й ж и зн и iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м Модуль 3 83 Используйте приведенную ниже шкалу от 1 до 10 и отметьте, какое число описывает, насколько вы сейчас напряжены: 1 – очень небольшое напряжение, а 10 – очень сильное напряжение Сосредоточение внимания на дыхании расслабляет. Выполняя дыхательные упражнения, вы можете снизить напряжение. Это упражнение займет: менее 5 минут. Предостережение: если вы испытываете трудности с дыханием, это упражнение может оказаться для вас не лучшим вариантом. Упражнение нужно делать следующим образом:  Сядьте на стул прямо, прислонившись спиной к спинке стула  Если вы стоите, встаньте прямо  Поставьте обе ступни на пол  Сосредоточьтесь на своем дыхании  Продолжайте дышать как обычно  Постарайтесь почувствовать, как вы дышите. Положите руку на живот, чтобы почувствовать, как вы делаете вдох и выдох  Выдохните через рот и втяните живот как можно сильнее  Проследите за дыханием таким образом в течение пары вдохов и затем прекратите упражнение 1. Упражнения для расслабления – Базовое дыхание 1 2 3 4 5 6 7 8 9 10ОЧЕНЬ НЕБОЛЬШОЕ ОЧЕНЬ СИЛЬНОЕ 2. Разные способы расслабления Есть разные способы расслабиться. Попробуйте и посмотрите, какие из них подходят вам больше всего. Прежде чем приступить к выполнению упражнения, спросите себя: «Насколько я напряжен?» После упражнения спросите себя еще раз. Это может помочь вам понять, помогает ли этот тип упражнений чувствовать себя менее напряженным. В этом уроке вы найдете семь упражнений для расслабления. Первые три упражнения займут всего несколько минут (т.е., максимум 5 минут). Другие упражнения займут немного больше времени (максимум 10-15 минут). У р о к 1 . С н и ж е н и е у р о в н я с тр е сс а в п о в се д н е в н о й ж и зн и iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м Модуль 3 84 Это упражнение поможет вам успокоиться и уменьшить уровень стресса. Вы должны дышать животом в соответствии с определенным ритмом. Это упражнение займет: 5 минут. Упражнение нужно делать следующим образом:  Сядьте прямо на стул и убедитесь, что ваше лицо и плечи расслаблены  Поднесите руки к животу и сделайте вдох с участием живота на 4 счета  Выдохните на 8 счетов в удобном для вас темпе  Ваш живот должен наполняться при каждом вдохе и сжиматься при каждом выдохе  Вернитесь к своему обычному дыханию и потратьте одну минуту, просто наблюдая за своим дыханием и замечая, как вы себя чувствуете  Прислушивайтесь к своим мыслям без негативных суждений  Если ваш разум блуждает, сосредоточьтесь на дыхании и медитации Благодаря этому упражнению вы почувствуете меньше напряжения в шее. Это также улучшит приток крови к вашему головному мозгу. Это упражнение займет: 5 минут. Упражнение нужно делать следующим образом:  Старайтесь осуществлять движения медленно и внимательно  Наклоняйте шею вперед и назад  Вдохните, одновременно поднимая и запрокидывая голову назад. Выдохните, опуская подбородок к груди  Поворачивайте подбородок из стороны в сторону влево и вправо  Вдохните, когда ваш подбородок окажется посередине. Выдохните, повернув подбородок в сторону  Наклоните ухо к плечу  Вдохните, когда ваша голова окажется посередине. Выдохните, опуская ухо к плечу  Повторите 5 раз 2. Упражнения для расслабления – Осознанное дыхание 3. Упражнения для расслабления – Движение шеей У р о к 1 . С н и ж е н и е у р о в н я с тр е сс а в п о в се д н е в н о й ж и зн и iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м Модуль 3 85 Вы можете расслабиться, сосредоточившись на своем дыхании и считая в обратном порядке от 20 до 1. Это упражнение займет: 5 минут. Упражнение нужно делать следующим образом:  Удобно сядьте или лягте в спокойном месте  Дышите медленно  Делайте вдох в течение не менее 3 секунд, а выдох – 6 секунд  Когда дышите, сосредоточьтесь на своем дыхании и нижней части живота, пока не почувствуете спокойствие и умиротворение в своем сердце и разуме  Произносите слово «расслабься» всякий раз, когда выдыхаете  Скажите себе, что вы начнете обратный отсчет от 20 до 1 4. Упражнения для расслабления – Подсчет чисел  Скажите себе, что вы удвоите уровень расслабления на каждый счет и полностью расслабитесь, когда дойдете до 1  Начните медленно считать от 20 до 1. Произносите слово «расслабься» всякий раз, когда считаете (то есть сделайте глубокий вдох, скажите «20», медленно выдохните и скажите «расслабься», сделайте глубокий вдох, сосчитайте «19», медленно выдохните и скажите «расслабься») и так далее)  Теперь повторите это упражнение, но уже с закрытыми глазами У р о к 1 . С н и ж е н и е у р о в н я с тр е сс а в п о в се д н е в н о й ж и зн и iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м Модуль 3 86  Представляйте себе места, людей и вещи, которые вам нравятся  Представьте, что бы вы могли слышать, чувствовать, обонять и/или пробовать на вкус, если бы оказались в этом месте  Постарайтесь думать об очень конкретных деталях места, вещи или человека. Например, как ощущается поверхность вещи и как она пахнет?  Удобно сядьте или лягте в спокойном месте  Дышите медленно  Делайте каждый вдох в течение не менее 3 секунд, а выдох – 6 секунд  Сосредоточьтесь на своем дыхании и нижней части живота, когда вы дышите, пока не почувствуете спокойствие внутри себя  Представьте, что вы находитесь в месте, которое вам нравится, или окружены вещами или людьми, которые вам нравятся  Теперь повторите это упражнение, но с закрытыми глазами 5. Упражнения для расслабления – Мысленный образ Вы можете расслабиться, представляя, что находитесь в месте, которое вам нравится, или окружены людьми и вещами, которые вам нравятся. Это упражнение займет: 5 минут. Перед выполнением этого упражнения ознакомьтесь с приведенными ниже полезными рекомендациями. Теперь постарайтесь расслабиться, представляя, что вы находитесь в каком-то месте или с людьми или вещами, которые вам нравятся. Упражнение нужно делать следующим образом: У р о к 1 . С н и ж е н и е у р о в н я с тр е сс а в п о в се д н е в н о й ж и зн и iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м Модуль 3 87 Это упражнение особенно полезно, когда ваши мышцы напряжены. Оно поможет вам расслабиться, напрягая и расслабляя мышцы. Это упражнение займет: 10-15 минут Предостережение: если у вас есть какие-либо травмы или другие физические ограничения, это упражнение может оказаться не самым подходящим для вас. Попробуйте выполнить какое-нибудь другое упражнение. Ниже приведены общие инструкции, о которых следует помнить: Когда будете готовы начать, напрягите описанную группу мышц. Убедитесь, что вы чувствуете напряжение, но не чувствуете боли. Держите мышцы в напряжении в течение примерно 5 секунд.  Расслабьте мышцы и сохраняйте их расслабленными в течение примерно 10 секунд. Может быть полезно сказать «расслабься», когда вы расслабляете мышцы  Когда закончите расслабление мышц, оставайтесь в сидячем положении в течение нескольких минут, готовя себя к активности Упражнение нужно делать следующим образом:  Правая рука и предплечье: сожмите правую руку в кулак. Задержите его в таком положении на 5 секунд, а затем расслабьте на 10 секунд. Не забывайте дышать. Полезно вдыхать, напрягая мышцы, и выдыхать, расслабляя их. Проделайте то же самое с левой рукой и предплечьем  Верхняя часть правой руки: поднимите правое предплечье к плечу, чтобы «напрячь мышцу». Задержите его в таком положении на 5 секунд, а затем расслабьте на 10 секунд. Проделайте то же самое для верхней части левой руки  Лоб: поднимите брови как можно выше, как будто вы чем- то удивлены. Задержите их в таком положении на 5 секунд, а затем расслабьте на 10 секунд  Глаза и щеки: зажмурьте глаза. Задержите их в таком положении на 5 секунд, а затем расслабьте на 10 секунд  Рот и челюсть: откройте рот как можно шире, как будто вы зеваете. Задержите его в таком положении на 5 секунд, а затем расслабьте на 10 секунд 6. Упражнения для расслабления – Расслабление мышц Продолжите упражнение (описание приведено на следующей странице) У р о к 1 . С н и ж е н и е у р о в н я с тр е сс а в п о в се д н е в н о й ж и зн и iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м Модуль 3 88  Шея: будьте осторожны, напрягая эти мышцы. Встаньте и медленно запрокидывайте голову назад, как будто смотрите в потолок. Задержите голову в таком положении на 5 секунд, а затем расслабьте на 10 секунд  Плечи: напрягите мышцы верхней части спины, постепенно поднимая плечи к ушам. Задержите их в таком положении на 5 секунд, а затем расслабьте на 10 секунд  Лопатки/Спина: отведите лопатки назад, стараясь, чтобы они почти коснулись друг друга и грудь выдвинулась вперед. Задержитесь в таком положении на 5 секунд, а затем расслабьтесь на 10 секунд  Грудь и живот: глубоко вдохните, наполняя легкие и грудную клетку воздухом. Задержите их в таком положении на 5 секунд, выдохните, а затем расслабьте живот на 10 секунд  Бедра и ягодицы: сожмите ягодичные мышцы. Задержите их в таком положении на 5 секунд, а затем расслабьте на 10 секунд  Верхняя часть правой ноги: напрягите правое бедро. Задержите его в таком положении на 5 секунд, а затем расслабьте на 10 секунд. Повторите для верхней части левой ноги  Правая голень: выполняйте медленно и осторожно, чтобы избежать судорог. Потяните пальцы ног на себя, чтобы растянуть икроножную мышцу. Задержите её в таком положении на 5 секунд, а затем расслабьте на 10 секунд. Повторите для левой голени  Правая стопа: согните пальцы ног по направлению книзу. Задержите их в таком положении на 5 секунд, а затем расслабьте на 10 секунд. Повторите для левой стопы 6. Упражнения для расслабления – Расслабление мышц (продолжение) У р о к 1 . С н и ж е н и е у р о в н я с тр е сс а в п о в се д н е в н о й ж и зн и iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м Модуль 3 89 Растяжка мышц может помочь снизить напряжение. Упражнения на растяжку очень удобны тем, что их можно выполнять в любом месте и в любое время. Это упражнение займет: 10 минут Упражнение нужно делать следующим образом:  Встаньте или выполните это упражнение, сидя на стуле  Сделайте глубокий вдох до самого низа живота и медленно выдохните  На выдохе почувствуйте, как напряжение покидает ваше тело  Сделайте еще один вдох, задержите его на мгновение… и медленно выдохните  С каждым вдохом вы расслабляетесь все больше и больше  Теперь осторожно разведите руки в стороны, как будто пытаетесь коснуться стен  Расслабьте плечи и немного потянитесь 7. Упражнения для расслабления - Растяжка Продолжите упражнение (описание приведено на следующей странице)  Аккуратно вытяните руки перед собой  Почувствуйте, как расслабляются мышцы спины и плеч  Вытянитесь вперед немного дальше  А теперь поднимитесь как можно выше  Поднимите руки к небу, как будто вы пытаетесь дотянуться до солнца  Снова разведите руки в стороны, как будто пытаетесь коснуться стен и вытолкнуть их наружу  Потянитесь перед собой  Почувствуйте, как ваши мышцы спины и плеч становятся более расслабленными и менее напряженными  Потянитесь к небу еще раз У р о к 1 . С н и ж е н и е у р о в н я с тр е сс а в п о в се д н е в н о й ж и зн и iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м Модуль 3 90  Потянитесь как можно выше  Попробуйте коснуться солнца  Опустите руки по бокам  Теперь отведите плечи назад  Почувствуйте, как напряжение покидает ваше тело  Снова отведите плечи назад  Теперь подайте их вперед. Снова вперед. Ещё раз вперёд  Теперь пожмите плечами, поднимая, а затем опуская их. И снова пожмите плечами  Теперь сделайте еще один глубокий и освежающий вдох и выдохните все напряжение в своем теле  Сделайте еще один вдох… и выдохните, избавляясь от оставшегося напряжения 7. Упражнения для расслабления – Растяжка (продолжение) У р о к 1 . С н и ж е н и е у р о в н я с тр е сс а в п о в се д н е в н о й ж и зн и iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м Модуль 3 91 3. Расслабление в любое время и в любом месте Вы можете найти время для расслабления в любое время дня и в любом месте. Рассмотрим пример Диана: расслабление во время ожидания в очереди Диана часто чувствует напряжение, если ей приходится долго стоять в очереди в магазине, поскольку знает, что у нее еще много других дел. Она решает делать дыхательные упражнения, пока стоит в очереди. После этого она чувствует себя менее напряженной. Вы также можете включать в свой план определенное время для расслабления и отдыха, например, каждый день после обеда. При необходимости вы можете использовать напоминания, например, на телефоне, чтобы не забыть выполнить упражнения для расслабления.  Вы можете найти время для расслабления в любом месте и в любое время дня  Поставьте перед собой цель: старайтесь хотя бы раз в день делать расслабляющее упражнение  Вы можете включать в свой план конкретное время для расслабления каждый день (при необходимости используйте напоминания)  После выполнения упражнений для расслабления вы почувствуете прилив сил и улучшение настроения  Даже простое короткое упражнение может изменить ситуацию!  Вы избавитесь от напряжения и продолжите качественно заботиться о члене семьи или знакомом, нуждающемся в вашей помощи Помните У р о к 1 . С н и ж е н и е у р о в н я с тр е сс а в п о в се д н е в н о й ж и зн и iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м Модуль 3 92 Отлично, вы закончили данный урок! Было полезно? Если нет, можем предположить, что следующие причины не позволили вам расслабиться в полной мере:  Вы не смогли сосредоточиться на расслаблении  Вы просто не нашли подходящее время  Вы не смогли с первой попытки выполнить сложное упражнение, которое требует постоянной практики, и не получили пользы, что является нормальным для новичков  Возможно, выбранное вами упражнение вам не подходит Попробуйте выполнить другое упражнение!  Упражнение, которое вы выбрали, было слишком коротким  Попробуйте выполнить это упражнение еще раз или сделайте другое! Если после этих советов упражнения по-прежнему вам не помогают, попробуйте заняться тем, что вам нравится. Смотрите Урок 2. Выделение времени для приятных занятий и отдыха в этом модуле, чтобы узнать, какие занятия вам могут понравиться. У р о к 1 . С н и ж е н и е у р о в н я с тр е сс а в п о в се д н е в н о й ж и зн и iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м Модуль 3 93 1. Важность приятных занятий Уход за человеком с деменцией – это длительный процесс, от которого время от времени нужно отдыхать. Приятные занятия, например, прогулка или беседа с близким другом, могут помочь вам расслабиться и продолжить качественно ухаживать за близким. Приятные занятия не всегда легко организовать, потому что обеспечение ухода может занимать много времени, и кому-то придется взять на себя уход за членом вашей семьи или знакомым, пока вас нет. Давайте посмотрим, как Элеонора, Лев и Иван относятся к уходу и важности планирования приятных занятий. Элеонора Элеонора ухаживает за своей матерью с деменцией. Она посвящает большую часть своего времени уходу и редко уделяет время себе. Никакими приятными делами она не занимается. Элеонора замечает, что в последнее время она устает больше, чем обычно, и чувствует, что не в состоянии заботиться о своей матери, как раньше. Урок 2. Выделение времени для приятных занятий У р о к 2 . В ы д е л е н и е в р е м е н и д л я п р и я тн ы х за н я ти й iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м Модуль 3 Почему этот урок важен? При уходе за другим человеком важно заботиться и о себе. Этот урок поможет вам продолжать заботиться о близком, не забывая при этом о себе. Каким образом этот урок поможет мне? Этот урок поможет вам найти и уделить время себе и заняться приятными делами, чтобы расслабиться и отдохнуть Что я смогу узнать? 1. Важность приятных занятий. 2. Препятствия для приятных занятий. 3. Как сделать приятные занятия достижимыми. 4. Совместные приятные занятия. 94 Лев Лев ухаживает за своим братом с деменцией. Лев мало спит, и у него редко находится время на дневной сон. Недавно он начал просить свою сестру прийти и помочь с уходом, чтобы он мог вздремнуть и почитать после обеда. Иван Иван ухаживает за своей женой с деменцией. Недавно он нанял профессиональную сиделку, которая приезжает к нему три раза в неделю, чтобы помочь ухаживать за женой. Когда приезжает профессиональная сиделка, Иван отдыхает и занимается своими делами.  Если вы не уделяете достаточно времени себе, в конце концов вы очень устанете и потеряете свою эффективность в уходе за близким  Вы можете попросить родственников и друзей помочь позаботиться о человеке, живущем с деменцией, чтобы уделить немного времени себе и отдохнуть  Если вы можете себе позволить, наймите профессиональную сиделку, которая поможет вам ухаживать за членом вашей семьи или другом, чтобы у вас осталось хоть немного времени на себя Помните У р о к 2 . В ы д е л е н и е в р е м е н и д л я п р и я тн ы х за н я ти й iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м Модуль 3 95 Модуль 3  Посещение театров, музеев  Просмотр фильмов  Встреча с друзьями или семьей  Приготовление еды  Прослушивание музыки  Занятие ремёслами и творчеством  Чтение  Небольшой сон в течение дня  Поход по магазинам  Прогулки  Занятие спортом  Другое: Какими приятными занятиями вы хотели бы заниматься? Когда у вас мало времени для себя, вам может быть трудно думать о вещах, которыми вы хотели бы заниматься. Но даже при нехватке времени вы все равно можете заниматься тем, что вам нравится. Для этого есть много возможностей, даже если у вас не так много свободного времени. В этом упражнении вы составите список приятных занятий, которыми вам хотелось бы заниматься. 1. Упражнение Пожалуйста, отметьте как минимум два вида деятельности, которыми вы хотели бы заниматься чаще. Если вашего любимого занятия нет в списке ниже, используйте поле «Другое», чтобы написать свое собственное занятие У р о к 2 . В ы д е л е н и е в р е м е н и д л я п р и я тн ы х за н я ти й iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м Модуль 3 96 2. Препятствия для приятных занятий Вернемся к примеру Элеоноры Элеонора посвящает большую часть своего времени уходу за матерью с деменцией. Она не получает никакой помощи от других людей и поэтому все время чувствует себя уставшей. Она изо всех сил пытается как можно лучше заботиться о своей матери и перестала заниматься тем, что ей нравится, потому что чувствует, что у нее не хватает на это времени. В конце концов, Элеонора устаёт настолько, что решает обратиться за помощью к подруге. Теперь она может уделить время себе и заняться приятными делами. После этого Элеонора чувствует прилив сил и энергии. Она также чувствует, что в результате ей легче справляться с уходом за матерью. Другие причины, по которым вы можете чувствовать себя не в состоянии заниматься приятными делами Нехватка времени была причиной того, что Элеонора чувствовала, что не может заниматься какими-либо приятными делами. Однако есть и несколько других причин. У р о к 2 . В ы д е л е н и е в р е м е н и д л я п р и я тн ы х за н я ти й iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м Модуль 3 97 Можете ли вы что-нибудь из следующего применить к себе? Пожалуйста, выберите любое утверждение, которое может относиться к вам.  Нет времени. Вы можете чувствовать, что слишком заняты и не можете найти свободное время. Очень важно, чтобы вы попытались найти время в течение дня или вечером, чтобы делать то, что вам нравится. Даже если у вас мало времени, есть занятия, которые не отнимают много времени и которые вы сможете вписать в свои планы на день  Нет сил. У вас может быть мало сил, потому что уход за человеком с деменцией утомителен. Хотя это трудно представить, вполне вероятно, что вы почувствуете больше сил после того, как займетесь любимым делом  Нет денег. Возможно, вы думаете, что вам нужно потратить много денег, чтобы заняться чем-то приятным. Но приятные занятия не обязательно должны быть дорогостоящими. Вы можете выбрать простые приятные занятия. Например, встреча с другом за чашкой чая или прогулка по парку не требуют больших затрат  Нет настроения. Возможно, вам не хочется заниматься приятными делами. Вполне вероятно, что ваше настроение улучшится после того, как вы займетесь любимым делом. С другой стороны, если вы не будете отвлекаться от ухода за близким и заниматься приятными делами, ваше настроение, скорее всего, ухудшится  Физические ограничения. Возможно, вы думаете, что если у вас есть физические ограничения, вы не сможете заняться чем-то приятным для себя. Но помните о том, что существует много возможностей, например, чтение, настольные игры или разговор с другом  Чувство вины. Вы можете чувствовать себя виноватым, потому что вам кажется, что вы убегаете от человека, за которым осуществляете уход. Но вам нужно время на занятия тем, что вам нравится, отдых и подкрепление своих сил, чтобы вы могли обеспечить качественный уход за этим человеком. Осуществлять должный уход означает заботиться и о себе 2. Упражнение У р о к 2 . В ы д е л е н и е в р е м е н и д л я п р и я тн ы х за н я ти й iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м Модуль 3 98 Советы для приятного времяпрепровождения  Попросите членов семьи/родственников/друзей помочь вам с выполнением некоторых повседневных задач  Подумайте о невыполнении некоторых задач в данный момент времени. Например, так ли необходима ежедневная уборка дома? Возможно, вы поймете, что можете быть более гибкими, а в результате у вас будет больше свободного времени  Старайтесь делать одно дело за раз и, насколько это возможно, заканчивайте дела, которые уже начали. Если вы оставите что-то незавершенным, это может вызвать чувство неудовлетворенности. Возможно, вы не сможете полностью сосредоточиться на своем следующем занятии. Но вы почувствуете в себе больше сил, если закончите одно дело, прежде чем приступить к другому  Подумайте, как лучше распоряжаться своим временем. Попробуйте вести планер или ежедневник, куда будете записывать все дела  Поговорите с кем-нибудь о том, как лучше распоряжаться своим временем. Может оказаться полезным узнать другое мнение и опыт, получить советы У р о к 2 . В ы д е л е н и е в р е м е н и д л я п р и я тн ы х за н я ти й iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м Модуль 3 99 3. Сделать приятные занятия осуществимыми Теперь оцените, насколько осуществимо было бы для вас заниматься теми приятными делами, которые вы выбрали ранее в этом уроке (см. упражнение на стр. 96). Посмотрите на каждое из занятий и подумайте, является ли оно: 1. Неосуществимым 2. Трудно осуществимый 3. Осуществимым в некоторой степени Пожалуйста, отметьте как минимум два вида деятельности, которыми вы хотели бы заниматься чаще. Если вашего любимого занятия нет в списке ниже, используйте поле «Другое», чтобы написать свое собственное занятие 3. Упражнение  Посещение театров, музеев  Просмотр фильмов  Встреча с друзьями или семьей  Приготовление еды  Прослушивание музыки  Занятие ремёслами и творчеством  Чтение  Небольшой сон в течение дня  Поход по магазинам  Прогулки  Занятия спортом  Другое: Неосуществимо Трудно осуществимо Сравнительно осуществимо Осуществимо Вполне осуществимо У р о к 2 . В ы д е л е н и е в р е м е н и д л я п р и я тн ы х за н я ти й iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м Модуль 3 4. Осуществимым 5. Вполне осуществимым 100 Какими из перечисленных занятий вы можете заняться сегодня? Неплохая идея – начать приятные занятия как можно скорее и включить их в свой распорядок дня. Какими из упомянутых приятных дел вы можете заняться уже сегодня? Если неудобно начинать какое-то дело сегодня, подумайте о тех приятных делах, которыми вы могли бы заняться завтра Начните с небольших целей и добавляйте больше приятных занятий после того, как почувствуете, что первая попытка увенчалась успехом. Пересмотрите заново приятные дела, которыми вы хотели бы заниматься, чтобы сделать их более осуществимыми.  Приятные занятия должны быть осуществимыми  Есть разные причины, по которым вы можете чувствовать, что приятные занятия для вас неосуществимы  Несмотря на эти причины, есть множество способов заниматься приятными делами Запомните 4. Совместные приятные занятия Заниматься приятными делами с человеком, за которым вы осуществляете уход, может быть очень полезно. Однако поначалу довольно трудно придумать такие занятия, которые подходят вам обоим. В этом упражнении мы составим список приятных занятий, которыми вы можете заниматься с человеком, за которым осуществляете уход. Сначала взгляните на опыт Льва из предыдущего упражнения. Лев Лев ухаживает за своим братом с деменцией. Лев может не только вздремнуть, пока его сестра присматривает за братом, но и взять брата на прогулку по парку. Его брату нравятся прогулки, а Лев в это время может немного потренироваться и подышать свежим воздухом. У р о к 2 . В ы д е л е н и е в р е м е н и д л я п р и я тн ы х за н я ти й iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м Модуль 3 101 Пожалуйста, выберите хотя бы одно занятие, которым вы хотели бы чаще заниматься вместе. Если занятия нет в списке ниже, используйте поле «Другое» в нижней части списка, чтобы добавить занятие, которое вы хотели бы делать Помните, что, несмотря на трудности, приятные занятия полезны вам и необходимы для того, чтобы вы могли продолжать заботиться о члене семьи или знакомом. Чем бы вы хотели заниматься чаще всего Взгляните на приведенный ниже список примеров того, что вы можете делать с человеком, за которым вы осуществляете уход.  Прослушивание музыки  Игра в настольные игры  Прогулка на свежем воздухе  Прослушивание или чтение рассказов, газетных статей, стихов и т.п.  Совместный завтрак/обед/ужин в кафе или ресторане  Приготовление еды  Просмотр фильмов  Занятие рукоделием или ремёслами  Просмотр фотографий  Наблюдение за природой  Обсуждение или беседы  Приглашение друзей или семьи в гости  Другое: 4. Упражнение У р о к 2 . В ы д е л е н и е в р е м е н и д л я п р и я тн ы х за н я ти й iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м Модуль 3 102 Отлично, вы закончили данный урок! У р о к 2 . В ы д е л е н и е в р е м е н и д л я п р и я тн ы х за н я ти й iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м Модуль 3 103 1. Мысли определяют то, как мы себя чувствуем Существуют разные способы справиться со стрессовыми ситуациями. Один из способов – думать по-другому. Не событие заставляет вас испытывать чувство гнева, грусть, радость или вину, а то, как вы думаете об этом событии. При этом событие может быть любым. Вот несколько примеров: Урок 3. Умение думать по-другому  Человек, за которым вы осуществляете уход, злится, когда вы его о чем-то спрашиваете  Член вашей семьи, который обещал помочь, не сдерживает свое обещание или избегает вас  Человек, за которым вы осуществляете уход, не может найти что-либо  Член вашей семьи обвиняет вас в том, что вы не обеспечиваете должного ухода Многие думают, что их чувства являются прямым следствием какого-либо события. Однако определяет ваши чувства именно то, как вы думаете о событии. Почему этот урок важен? Ваши мысли определяют то, как вы себя чувствуете. Бесполезные мысли могут привести к плохому самочувствию. Каким образом этот урок поможет мне? Этот урок поможет вам научиться думать по- другому и превратить бесполезные мысли в полезные. Что я смогу узнать? 1. Мысли определяют то, как мы себя чувствуем. Вы не можете изменить то, что происходит, но вы можете изменить свою реакцию на эти события. 2. Научитесь думать по-другому, заменяя бесполезные мысли полезными. 3. Если будете думать по-другому, вы сможете чувствовать себя лучше. У р о к 3 . У м е н и е д у м ат ь п о -д р у го м у iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м Модуль 3 104 Как, по-вашему, следует поступить Анне? Пожалуйста, отметьте все ответы, которые вы считаете подходящими 1. Проверьте свое понимание  Существует множество различных способов воспринимать события  Негативные мысли могут привести к плохому самочувствию  Думая по-другому, вы сможете чувствовать себя лучше и лучше справляться с событиями Помните Потерянные ключи Анна замужем за Максимом, который живет с деменцией. Она собирается выйти из дома, чтобы встретиться с подругой. Максим говорит: «Я не могу найти свои ключи! Ты не можешь оставить меня без ключей!». Анна думает про себя: «Я больше не могу оставлять его одного», и чувствует себя несчастной. Чувства и мысли  Сказать Максиму, что она сейчас не может помочь ему с поиском ключей, и уйти на встречу с подругой  Искать ключи до тех пор, пока она не найдутся  Сказать Максиму, что он должен быть более осторожным, чтобы не терять ключи  Подумать про себя: «У Максима деменция, и он иногда беспокоится, когда теряет вещи. Я могу потратить некоторое время на то, чтобы помочь найти ключи, а затем уйти». А после позвонить подруге и объяснить, что немного задерживаюсь У р о к 3 . У м е н и е д у м ат ь п о -д р у го м у iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м Модуль 3 105  Не само событие заставляет вас злиться, грустить, быть счастливым или несчастным  Полезные или бесполезные мысли могут определять вашу реакцию на ситуацию  Изменив свои мысли, вы можете изменить свои чувства ПомнитеБесполезные и полезные мысли Анны Когда Максим не может найти свои ключи, Анна думает про себя: «Я больше не могу оставлять Максима одного». Это делает ее несчастной. Это бесполезные мысли, которые могут мешать правильно реагировать на подобные ситуации. Вместо этого Анна могла бы подумать: «У Максима деменция, и он иногда беспокоится, когда теряет вещи. Я могу потратить некоторое время на то, чтобы помочь, а затем уйти». Другой способ мышления, вероятно, даст Анне возможность почувствовать себя лучше и поможет ей оставаться более спокойной и сострадательной. Полезные мысли могут помочь правильно реагировать на подобные ситуации. У р о к 3 . У м е н и е д у м ат ь п о -д р у го м у iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м Модуль 3 106 Укажите, какие мысли Арианы могут помочь ей почувствовать себя лучше? Ариана может подумать, что…  Время, которое я уделяю себе, дарит мне силы на осуществление ухода  Я плохо ухаживаю за человеком, если он не всегда выглядит счастливым  Возможно, человеку, живущему с деменцией, станет лучше  Никто не понимает, как тяжело ухаживать за человеком с деменцией  Никто не может обеспечить уход так, как это делаю я  Обращение за помощью к другим людям может помочь мне разделить обязанности по уходу  Деменция – это болезнь, в ней нет ни моей, ни чьей-либо еще вины Бесполезные мысли приводят к плохому самочувствию Ариана уже несколько лет ухаживает за членом своей семьи, живущим с деменцией. У нее много мыслей. От одних она начинает чувствовать себя хуже, от других – лучше.  Бесполезные мысли могут привести к плохому самочувствию  Полезные мысли важны для того, чтобы чувствовать себя лучше, и они помогут вам справляться с ситуациями более эффективно  Чтобы чувствовать себя лучше, важно выявлять бесполезные мысли и справляться с ними Помните2. Проверьте свое понимание Мысли, которые помогут вам почувствовать себя лучше У р о к 3 . У м е н и е д у м ат ь п о -д р у го м у iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м Модуль 3 107 Как вы думаете, что чувствует Александр? Пожалуйста, отметьте все ответы, которые вы считаете подходящими  Злость  Вину  Счастье  Одиночество  Печаль  Поддержку  Грусть 2. Научитесь думать по-другому, заменяя бесполезные мысли полезными Что, если Александр вместо этого подумает про себя: «Если Константин думает, что мне нужна помощь, он, должно быть, заботится обо мне и моем отце и хочет убедиться, что у нас все хорошо?» 3. Проверьте себя Как мысли влияют на наши чувства Александр встречает своего друга Константина Александр заботится о своем отце, живущем с деменцией. Пока он делает покупки, он встречает своего друга Константина, который спрашивает: «Как дела? Тебе нужна помощь по уходу за отцом?». Александр рассуждает: «Если Константин спрашивает, нужна ли мне помощь, он, должно быть, думает, что я плохо забочусь об отце». Как сейчас чувствует себя Александр? Пожалуйста, отметьте все ответы, которые вы считаете подходящими  Злой  Виноватый  Счастливый  Одинокий  Печальный  Поддерживаемый  Расстроенный 4. Проверьте себя Сопоставьте чувства с полезными мыслями Иногда вы не можете изменить происходящие события, но вы можете изменить свои мысли и реакцию на них Помните У р о к 3 . У м е н и е д у м ат ь п о -д р у го м у iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м Модуль 3 108  Я должен делать все в одиночку  Человек, за которым я осуществляю уход, больше не беспокоится обо мне  Когда человек, о котором я забочусь, недоволен, это означает, что я плохо ухаживаю за ним  Может быть, человеку, за которым я осуществляю уход, станет лучше  Я всегда должен быть доступен для человека, за которым осуществляю уход  Я не должен думать о своих потребностях, если хочу быть хорошим помощником, осуществляющим уход  Никто не понимает, как тяжело ухаживать за человеком с деменцией Какие у вас есть бесполезные мысли? В предыдущем примере вы указали, какие мысли полезны, а какие могут быть бесполезны. Ниже приведен список бесполезных мыслей. Пожалуйста, отметьте бесполезные мысли, которые у вас есть, или приведите дополнительные примеры 1. Упражнение  Никто не может обеспечить уход так, как это делаю я  У него/неё диагностировали деменцию, и это усложнило мою жизнь  У меня нет времени на другие дела  Мне жаль человека, за которым я осуществляю уход  Другим людям лучше, чем мне и человеку, за которым я осуществляю уход  Другое: У р о к 3 . У м е н и е д у м ат ь п о -д р у го м у iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м Модуль 3 109 Замена бесполезных мыслей полезными может помочь вам почувствовать себя лучше Какие у вас есть полезные мысли? В предыдущем примере вы указали, какие мысли полезны, а какие бесполезны. Ниже приведен список полезных мыслей. Пожалуйста, отметьте полезные мысли, которые у вас есть, или приведите дополнительные примеры.  Расслабляться и отдыхать нормально, так как это поможет мне обеспечить хороший уровень ухода  Я сниму напряжение, если поделюсь своими чувствами с другими  Обращение за помощью к другим людям может помочь мне разделить бремя забот  Время, которое я уделяю себе, помогает мне лучше осуществлять уход  Деменция – это болезнь, в ней нет ни моей, ни чьей-либо еще вины  Другое: Помните2. Упражнение У р о к 3 . У м е н и е д у м ат ь п о -д р у го м у iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м Модуль 3 110 3. Если вы будете думать по-другому, вы почувствуете себя намного лучше Вы не можете изменить то, что происходит, но вы можете изменить свою реакцию на эти события. Другими словами, вы не можете изменить события, но вы можете изменить свои мысли. Пример 1: Владимир Владимир ухаживает за своей женой Светланой, которая живет с деменцией. Он пишет следующее: Вчера мы с женой Светланой навестили друзей. Мы пили чай вместе. Светлана уронила чашку на пол. Когда начали мыть пол, Светлана не помогла, а мешала. Она не стала извиняться за свое поведение, а наоборот рассмеялась Наши друзья расстроены из-за моей жены и больше не пригласят нас к себе домой Что было бы полезнее думать? Какие у вас были бесполезные мысли? Что заставило вас чувствовать себя расстроенным? Имя: Владимир Какие чувства могут вызвать у вас полезные мысли? Вместо того, чтобы волноваться и стыдиться, я был рад провести этот день с друзьями У моей жены деменция, и она не может думать и действовать так, как раньше. Наши друзья не будут винить мою жену, поскольку я объяснил им, что у нее деменция и что ее мышление ухудшилось У р о к 3 . У м е н и е д у м ат ь п о -д р у го м у iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м Модуль 3 111 Пример 2: Лилия Лилия заботится о своем брате Матвее, живущем с деменцией. Она пишет следующее: Неделю назад к нам в гости приехала сестра. В конце дня я сказала Матвею: «Это был отличный день, правда?» Потом он сказал, что не уверен, потому что не может точно вспомнить, что мы делали. После этого он сказал, что устал и хочет спать Имя: Лилия Ничто из того, что мы делали, не имеет смысла, потому что Матвей не помнит об этом. Все рушится из-за деменции Хотя он и не помнит, что мы делали, я знаю, что у него тоже был отличный день, а это главное. Сегодня он много улыбался и продолжал говорить, как хорошо, что мы увиделись с сестрой Вместо того, чтобы грустить и переживать, я радуюсь тому дню, который мы провели с нашей сестрой Что было бы полезнее думать? Какие у вас были бесполезные мысли? Что заставило вас чувствовать себя расстроенным или несчастным? Какие чувства могут вызвать у вас полезные мысли? У р о к 3 . У м е н и е д у м ат ь п о -д р у го м у iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м Модуль 3 112 Теперь ваша очередь. В следующем упражнении вы будете работать над тем, чтобы превратить бесполезные мысли в полезные. Попробуйте вспомнить недавнее событие, которое расстроило вас, и ответьте на приведенные ниже вопросы. Вы можете обратиться за помощью к примерам на предыдущей странице. У р о к 3 . У м е н и е д у м ат ь п о -д р у го м у iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м Модуль 3 Имя: Что было бы полезнее думать? Какие у вас были бесполезные мысли? Что заставило вас чувствовать себя расстроенным или несчастным? Какие чувства могут вызвать у вас полезные мысли? 113 Практика приводит к совершенству. Вы хотите попробовать еще раз? Пожалуйста, ответьте на вопросы ниже для другого события. У р о к 3 . У м е н и е д у м ат ь п о -д р у го м у iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м Модуль 3 Имя: Что было бы полезнее думать? Какие у вас были бесполезные мысли? Что заставило вас чувствовать себя расстроенным или несчастным? Какие чувства могут вызвать у вас полезные мысли? 114 Отлично, вы закончили данный урок! Краткий обзор того, что вы узнали в этом уроке  Вы не можете изменить то, что происходит, но вы можете изменить свою реакцию на события  Вы можете научиться думать по-другому, заменяя бесполезные мысли полезными  Если вы будете думать по-другому, вы будете лучше чувствовать себя Помните Есть события, которые неизбежно заставляют вас чувствовать себя расстроенным, несчастным, вызывают грусть или гнев. Например, если человеку, за которым вы ухаживаете, необходимо лечь в больницу, или если вы потеряли дорогого друга или члена семьи. В таких ситуациях вы будете испытывать грусть, горе или гнев, и эти чувства вряд ли можно изменить. У р о к 3 . У м е н и е д у м ат ь п о -д р у го м у iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м Модуль 3 115 Подумать про себя: «У Максима деменция, и он иногда беспокоится, когда теряет вещи. Я могу потратить некоторое время на то, чтобы помочь, а затем уйти». А после позвонить подруге и объяснить, что немного задерживаюсь. Это хороший совет. Анна несчастна не из-за того, что Максим потерял ключи, а из-за понимания, что ей всегда нужно помогать Максиму и что она не может больше оставлять его одного. После того, как Анна позвонит своей подруге, она может помочь Максиму найти ключи, что подарит ему чувство безопасности. Тогда она сможет пойти к своей подруге. 1. Проверьте себя ОТВЕТЫ – Забота обо мне Урок 3. Умение думать по-другому Как вы думаете, что должна сделать Анна? Чувства и мысли Сказать Максиму, что она сейчас не может помочь ему с поиском ключей, и уйти. Это плохая идея. У Максима деменция, и он беспокоится. Он может очень расстроиться, если Анна прямо сейчас выйдет из дома. Искать ключи до тех пор, пока она их не найдет. Это может быть полезно. Максим мог бы почувствовать себя в большей безопасности, если бы у него были ключи. Однако это повлечет за собой то, что Анна расстроится из-за задержки встречи со своей подругой и почувствует себя несчастной. Сказать Максиму, что он должен быть более осторожным, чтобы не потерять свои ключи в будущем. Это не очень хороший совет. У Максима деменция, он не может класть вещи на свои места.    О Т В Е Т Ы – З аб о та о б о м н е . У р о к 3 Модуль 3 iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м 116 Время, которое я уделяю себе, помогает мне лучше осуществлять уход. Это полезная мысль. Никто не должен чувствовать себя виноватым, если уделяет время себе. Это может дать силы человеку, помогающему своему близкому, осуществлять уход за ним в течение долгого времени. Я плохо ухаживаю, если член моей семьи не всегда счастлив. Эта мысль сделает Ариану несчастной и грустной. Настроение человека, живущего с деменцией, зависит не только от лица, осуществляющего уход. Например, его настроение также может быть связано с деменцией, депрессией, функциональными способностями или свойствами личности. Возможно, человеку, живущему с деменцией, станет лучше. Эта мысль может разочаровать Ариану, поскольку состояние людей с деменцией продолжает ухудшаться. Заболеваний, вызывающих деменцию, много. К сожалению, ни от одной из этих болезней пока нет лекарства. Деменция – это болезнь, в ней нет ни моей, ни чьей-либо еще вины. Эта мысль полезна и может помочь избавиться от чувства вины. 2. Проверьте себя Никто не понимает, как тяжело осуществлять уход. Эта мысль может заставить Ариану чувствовать себя расстроенной, изолированной и одинокой. Возможно, есть люди, которые не понимают, как трудно осуществлять уход за другими. Тем не менее, ваше общение с другими людьми даст им возможность лучше понять, что такое деменция, и поможет вам снять некоторое напряжение. Никто не может обеспечить уход так, как это делаю я. Эта мысль могла заставить Ариану чувствовать себя одинокой, изолированной и находящейся под давлением обстоятельств. Хотя другие люди могут ухаживать по-другому, это не означает, что она будет плохо выполнена. Важно привлекать других людей к помощи по уходу за человеком, живущим с деменцией, чтобы избежать чрезмерной перегрузки. Обращение за помощью к другим людям может помочь мне разделить обязанности по уходу. Это полезная мысль, которая может побудить Ариану чувствовать себя более уверенно. Вовлечение других людей в уход за больными имеет много потенциальных преимуществ. Например, у человека, осуществляющего уход, появится больше времени для себя и для отдыха, а поэтому он сможет обеспечивать уход в течение более длительного времени. Мысли, которые помогут вам почувствовать себя лучше Какие мысли Арианы могут помочь ей почувствовать себя лучше?        117 О Т В Е Т Ы – З аб о та о б о м н е . У р о к 3 Модуль 3 iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м Александр рассуждает: «Если Константин спрашивает, нужна ли мне помощь, он, должно быть, думает, что я плохо осуществляю уход». Как вы думаете, что чувствует Александр? Это бесполезная мысль, которая может заставить Александра чувствовать себя: Расстроенным Одиноким Печальным Злым Виноватым Александр рассуждает: «Если Константин думает, что мне нужна помощь, он, должно быть, заботится обо мне и моем отце и хочет убедиться, что у нас все хорошо». Как сейчас чувствует себя Александр? Это полезная мысль, которая может побудить Александра чувствовать поддержку и быть счастливым. 3. Проверьте себя Как мысли влияют на наши чувства 4. Проверьте себя Сопоставьте чувства с полезными мыслями      118 О Т В Е Т Ы – З аб о та о б о м н е . У р о к 3 Модуль 3 iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м ОБЕСПЕЧЕНИЕ ЕЖЕДНЕВНОГО УХОДА Урок 1. Еда и питье – более приятное времяпрепровождение Урок 2. Еда и питье – профилактика проблем со здоровьем Урок 3. Использование туалета и уход при недержании Урок 4. Личная гигиена Урок 5. Приятный день Модуль 1. Как сделать прием пищи более приятным Привлечение людей с деменцией к выполнению простых задач во время приема пищи помогает максимально задействовать их навыки, повышает чувство их значимости и собственного достоинства, а также приносит удовольствие от еды. Урок 1. Еда и напитки – более приятное времяпрепровождение Почему этот урок важен? Деменция может по-разному влиять на процесс приема пищи и питьевой режим в зависимости от стадии протекания синдрома и состояния здоровья. Каким образом этот урок поможет мне? Вы узнаете, как сделать прием пищи более приятным и предотвратить обезвоживание Что я смогу узнать? 1. Как сделать прием пищи более приятным. 2. Как создать благоприятную атмосферу во время еды. 3. Как заботиться о состоянии здоровья, которое может влиять на процесс приема пищи и питья. 4. Как предотвратить обезвоживание. У р о к 1 . Е д а и н ап и тк и – б о л е е п р и я тн о е в р е м я п р е п р о в о ж д е н и е iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м Модуль 4 120 121 Рассмотрим пример Юлия была домохозяйкой и на протяжении многих лет каждый день готовила для своей семьи. Недавно она потеряла мужа и сейчас живет с одним из сыновей. В доме сына обязанность по приготовлению еды полностью лежит на плечах Аллы, невестки Юлии. Из-за этого Юлия очень грустит в новом доме и говорит, что не хочет есть, когда ей предлагают обедать. Она не присоединяется к семье за обедом. Как бы вы посоветовали семье Юлии поступить в этой ситуации? Пожалуйста, выберите из списка ответ, который вы считаете правильным  Принести обед Юлии в ее комнату  Потребовать, чтобы Юлия присоединялась к ним за обедом  Позволить Юлии помочь с приготовлением еды и уборкой со стола Проверьте себя Как сделать прием пищи более приятным У р о к 1 . Е д а и н ап и тк и – б о л е е п р и я тн о е в р е м я п р е п р о в о ж д е н и е iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м Модуль 4 А теперь подумайте о том, как можно привлечь человека, за которым вы осуществляете уход, к процессу приготовления и употребления еды Мероприятия, связанные с приемом пищи Пример Совместный шоппинг  Позвольте человеку с деменцией выбирать, какую еду и напитки ему хотелось купить на завтрак, обед и ужин Приготовление пищи  Позвольте человеку с деменцией помогать вам готовить: измельчать, мешать или сервировать блюдо Сервировка стола  Позвольте человеку с деменцией накрывать на стол к завтраку, обеду и ужину Уборка стола  Позвольте человеку с деменцией убирать посуду и приборы с обеденного стола и протирать его Мытье или вытирание посуды  Позвольте человеку с деменцией ставить посуду в раковину или мыть и вытирать ее Если вы считаете, что человек, за которым вы ухаживаете, все еще может выполнять любое из перечисленных занятий и ему нравится это делать, возможно, вы могли бы попросить его помочь вам или попробовать выполнить эти занятия вместе в следующий раз. 1. Упражнение Действия, связанные с приемом пищи Выберите из приведенного ниже списка все виды деятельности, которыми, по вашему мнению, человек, за которым вы осуществляете уход, все еще может заниматься и которые ему понравятся У р о к 1 . Е д а и н ап и тк и – б о л е е п р и я тн о е в р е м я п р е п р о в о ж д е н и е iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м Модуль 4 122 2. Проверьте себя Создание благоприятной атмосферы во время еды Как бы вы посоветовали сыну Сергея поступить в этой ситуации? Пожалуйста, отметьте все ответы, которые вы считаете подходящими  Купить для Сергея в магазине адаптивные приспособления для приема пищи и напитков  Поставить для Сергея отдельный стол в его собственной спальне, потому что пролитая и рассыпанная еда может вызвать раздражение семьи  Организовать семейное собрание, чтобы попросить всех членов семьи подумать о более позитивных и конструктивных способах реагирования на эту ситуацию 2. Создание благоприятной атмосферы во время еды Время приема пищи – это хорошая возможность для лиц, осуществляющих уход, показать свою заботу и поддержку человеку, живущему с деменцией. Приятная атмосфера во время еды может пробудить у человека аппетит. Давайте снова рассмотрим пример Пролитая или упавшая еда У Сергея болезнь Альцгеймера, и он живет со своим старшим сыном, так как его жена скончалась год назад. Сейчас в семье четыре поколения, которые вместе едят за одним столом. Сергей считает время приема пищи лучшим временем дня. В последнее время у Сергея начали дрожать руки, и он часто проливает или роняет еду на стол и пол. У р о к 1 . Е д а и н ап и тк и – б о л е е п р и я тн о е в р е м я п р е п р о в о ж д е н и е iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м Модуль 4 123 Состояние здоровья Общее состояние здоровья человека с деменцией может повлиять на прием пищи и питья. Приведённые ниже мероприятия научат вас, как улучшить его состояние здоровья. 2. Упражнение Состояние здоровья Изменения, которые вы могли заметить Рекомендуемые действия, которые вы можете попробовать Плохой аппетит  Не хочет принимать пищу  Ест только небольшое количество пищи  Долго ест даже небольшое количество пищи  Сделать еду привлекательной: использовать различные текстуры, вкусы, запахи и цвета, которые нравятся человеку  Дать человеку возможность есть вместе с семьей  Во время еды включать спокойную музыку, которая нравится ему  Увеличить объем физической активности, которую человек с деменцией может выполнять в течение дня Зубная боль  Отказывается есть и пить  Ведёт себя беспокойно  Выражение лица, указывающее на боль  Спросить, испытывает ли человек боль  Попросить его указать на область боли  Проверить, нет ли шатающихся зубов, язв во рту и т.д.  Обратиться за помощью к врачу или стоматологу Плохо подобранные зубные протезы  Отказывается есть и пить  Ведёт себя беспокойно  Выражение лица, указывающее на боль  Отказывается от ношения зубных протезов  Бросает зубные протезы на пол  См. выше пункт о зубной боли  Убедитесь, что зубные протезы находятся в хорошем состоянии и правильно установлены У р о к 1 . Е д а и н ап и тк и – б о л е е п р и я тн о е в р е м я п р е п р о в о ж д е н и е iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м Модуль 4 124 2. Упражнение Состояние здоровья Изменения, которые вы могли заметить Рекомендуемые действия, которые вы можете попробовать Боль в теле  Отказывается есть и пить  Ведёт себя беспокойно  Принимает необычные позы  Выражение лица, указывающее на боль  Спросить, испытывает ли человек боль  Попросить его указать на область боли  Обратиться за помощью к врачу Отсутствие дефекации более 7 дней  Твердый и сухой кал  Затрудненная дефекация/натуживание  Ощущение неполной дефекации  Тревожное или возбужденное состояние  Твердый живот  Тошнота и рвота  Обратиться за помощью к врачу После разрешения проблемы:  Увеличить количество клетчатки в рационе питания  Увеличить потребление жидкости  Увеличить физическую активность Диарея  Жидкий стул  Увеличение количества дефекаций  Недержание мочи и трудности с контролем дефекации  Обратиться за помощью к врачу Побочные эффекты от лекарств  Тошнота, рвота, жидкие стул или запор  Не хочет принимать пищу  Ест только небольшое количество пищи  Обратиться за помощью к врачу У р о к 1 . Е д а и н ап и тк и – б о л е е п р и я тн о е в р е м я п р е п р о в о ж д е н и е iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м Модуль 4 125 2. Упражнение Состояние здоровья Изменения, которые вы могли заметить Рекомендуемые действия, которые вы можете попробовать Потеря памяти: забывает есть или пить  Спрашивает, когда следующий прием пищи, даже если он уже был  Говорит, что голоден, даже если уже поел  Следить за временем, регулярностью и количеством приемов пищи  Есть и пить вместе с подопечным  Обеспечить перекус между приемами пищи Депрессия  Отказывается от еды или говорит, что не голоден  Ест небольшое количество пищи  Не проявляет интереса к пище  Обратиться за помощью к врачу Потеря веса  Забывает поесть  Ест меньшее количество пищи  Ест постоянное количество пищи, но все равно худеет  Увеличить количество еды  Предложить продукты, которые ему нравятся  Увеличить количество ароматной пищи, так как вкус человека может быть нарушен  Обратиться за советом к врачу Увеличение веса  Ест всю еду, которую подают  Ест больше, чем раньше, потому что забывает, что уже ел  Помешан на еде  Есть и пить вместе  Подавать порции меньшего размера  Убирать тарелку, когда человек скажет, что он сыт  Предлагать низкокалорийные блюда У р о к 1 . Е д а и н ап и тк и – б о л е е п р и я тн о е в р е м я п р е п р о в о ж д е н и е iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м Модуль 4 126 4. Профилактика обезвоживания Люди с деменцией подвержены более высокому риску обезвоживания. Причин этому может быть несколько:  неспособность объяснить свои потребности;  снижение чувства жажды;  предлагается недостаточное количество питья;  проблемы с глотанием на поздней стадии деменции. Человеку, за которым вы осуществляете уход, необходимо ежедневно выпивать 8-10 стаканов (1500-2000 миллилитров) жидкости (вода, сок, не считая чая или кофе). Сильное обезвоживание У Бориса болезнь Альцгеймера, но он может есть и пить без помощи своей жены Екатерины. Борис любит много гулять. Однажды жарким днем Екатерина замечает, что Борис выглядит уствшим, ходит очень медленно, а затем падает на пол. Бориса госпитализируют в местную больницу, где ему диагностируют обезвоживание. После лечения в больнице Борис поправился и снова может вернуться домой. 2. Проверьте себя Сильное обезвоживание Как бы вы посоветовали Екатерине поступить в ситуации после выписки Бориса домой Выберите все ответы, которые считаете подходящими  Екатерине нужно позволить Борису самому решать, когда следует пить  Екатерине нужно следить, чтобы Борис выпивал 8-10 стаканов воды в течение дня  Екатерина должна записывать время и количество жидкости, которую Борис употребляет У р о к 1 . Е д а и н ап и тк и – б о л е е п р и я тн о е в р е м я п р е п р о в о ж д е н и е iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м Модуль 4 127 3. Упражнение График приема пищи и напитков Приведенное ниже расписание предназначено для того, чтобы вы могли напомнить человеку с деменцией о том, что нужно пить достаточное количество жидкости, а также иметь возможность контролировать объем употребленной жидкости. Давайте человеку возможность самому выбирать, что он будет пить. Время суток Тип жидкости (например, вода) Количество жидкости (например, 3 стакана) Утро - Полдень Полдень - Обед Ужин - Сон ПРЕДУПРЕЖДЕНИЕ! Если у человека, за которым вы ухаживаете, есть ограничения по количеству употребляемой жидкости из-за болезни сердца, вам необходимо следовать указаниям врача относительно того, сколько жидкость в день можно употреблять. У р о к 1 . Е д а и н ап и тк и – б о л е е п р и я тн о е в р е м я п р е п р о в о ж д е н и е iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м Модуль 4 128 Краткий обзор того, что вы узнали  Человека, за которым вы осуществляете уход, нужно поощрять и поддерживать в еде и питье  Вы можете вовлечь человека, за которым вы осуществляете уход, в разные этапы приготовления еды, сервировки и уборки стола. Это поможет ему чувствовать себя нужным и самостоятельным  Процесс приема пищи и напитков можно облегчить, изменив способ приготовления пищи, сервировку стола и окружающее пространство  Вы можете улучшить состояние здоровья вашего близкого при помощи хорошего питания и регулярного питья. В этом вам может потребоваться помощь медицинских работников  Чтобы предотвратить обезвоживание, важно побуждать человека с деменцией пить, а также напоминать ему об этом  Записывайте и контролируйте количество потребляемой им жидкости Отлично, вы закончили данный урок! У р о к 1 . Е д а и н ап и тк и – б о л е е п р и я тн о е в р е м я п р е п р о в о ж д е н и е iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м Модуль 4 129 О Т В Е Т Ы – О б е сп е че н и е е ж е д н е в н о го у хо д а. У р о к 1 Модуль 4 iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м ОТВЕТЫ - Обеспечение ежедневного ухода Урок 1. Еда и питье– более приятное времяпрепровождение 1. Проверьте себя Как сделать прием пищи более приятным Как семья Юлии могла поступить в этой ситуации? Принести обед Юлии в ее комнату. Это не очень полезно, поскольку может еще больше изолировать Юлию от ее семьи. Юлия может почувствовать себя в новом доме нежеланной. Она потеряла мужа, собственный дом, и больше не может готовить для всей семьи как прежде. Потребовать, чтобы Юлия присоединялась к ним за обедом. Это не очень хороший ответ, потому что он может рассердить Юлию и заставить ее еще больше отдалиться от семьи. Семья Юлии должна позволить ей помогать с приготовлением пищи и уборкой. Это хороший ответ, потому что ее семья знает, что Юлия по-прежнему любит готовить, и поэтому должна поддержать ее и позволить заниматься тем, что ей нравится и что она все еще может делать. 130 Модуль 4 2. Проверьте себя Как сделать прием пищи более приятным Как сын Сергея мог поступить в этой ситуации? Купить для Сергея адаптивные приспособления для приема пищи и напитков в магазине. Это хороший ответ, потому что сын Сергея понимает, что его отец больше не может есть и пить, используя обычную посуду. Покупка адаптивной посуды может решить проблему с приемом пищи и напитков. Поставить для отца отдельный стол в его собственной спальне, потому что пролитая и рассыпанная еда может вызвать раздражение семьи. Это не очень хорошо, потому что такая изоляция расстроит Сергея и может помешать ему спокойно есть и пить. Организовать семейное собрание, чтобы попросить всех членов семьи подумать о более позитивных и конструктивных способах реагирования на ситуацию во время приема пищи. Это хороший ответ, потому что сын Сергея старается создать для всех позитивную атмосферу во время еды. 131 iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м О Т В Е Т Ы – О б е сп е че н и е е ж е д н е в н о го у хо д а. У р о к 1 Модуль 4 3. Проверьте себя Как сделать прием пищи более приятным Как Екатерина может поступить после того, как Бориса выпишут домой? Екатерине нужно позволить Борису самому решать, когда следует пить Этот ответ не так хорош, хотя при этом Екатерина уважает самостоятельность Бориса. Поскольку у людей с деменцией снижено чувство жажды, может быть небезопасно оставлять за ними право решать, пить или нет, не напоминая им об этом. Если не напомнить и не контролировать количество употребленной жидкости, Борис может снова подвергнуться обезвоживанию и потерять сознание. Екатерине нужно следить, чтобы Борис выпивал 8-10 стаканов воды в течение дня. Это удачный ответ. Екатерина замечает, что Борис может забывать пить, поэтому старается помочь мужу каждый день пить достаточное количество воды. Екатерина записывает время и количество жидкости, которую Борис употребляет. Это удачный ответ. Может быть полезно установить график приема жидкости и записывать количество стаканов, которые Борис выпивает с утра и до вечера. При этом необходимо помнить, что употребление напитков после обеда потенциально может увеличить количество посещений туалета в ночное время. 132 iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м О Т В Е Т Ы – О б е сп е че н и е е ж е д н е в н о го у хо д а. У р о к 1 Урок 2. Прием пищи, питья и профилактика проблем со здоровьем Почему этот урок важен? Деменция может по-разному влиять на процесс приема пищи и питья в зависимости от стадии деменции и состояния здоровья. Каким образом этот урок поможет мне? Вы узнаете, как улучшить процесс приема пищи и питья, предотвратить потерю веса и способствовать безопасному употреблению пищи и питья. Что я смогу узнать? 1. Как улучшить питание и предотвратить потерю веса. 2. Как помочь человеку, за которым вы осуществляете уход, безопасно питаться и предотвратить аспирационную пневмонию 1. Улучшить питание и предотвратить стресс На поздних стадиях деменции человек с деменцией может испытывать трудности при жевании и глотании. Также из-за старения и деменции может снижаться обоняние, вкусовое восприятии и зрение. Это может оказывать негативное влияние на здоровье человека. Депрессия и изменения в режиме питания также могут усложнить процесс приема пищи и пищеварения. Рассмотрим пример У Маргариты уже 9 лет деменция, и о ней заботится дочь Елизавета. В последнее время Елизавета замечает, что ее мать спит в течение дня, и после этого ее очень трудно разбудить. Елизавета не хочет тревожить сон мамы. Из-за этого Маргарита не ест в обычное для нее время. Недавний осмотр у врача показал, что Маргарита похудела на 2,5 кг с момента последнего посещения врача, который был 5 недель назад (5% от ее массы тела). Модуль 4 У р о к 2 . П р и е м п и щ и , н ап и тк о в и п р о ф и л ак ти к а п р о б л е м с о з д о р о в ье м iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м 133 2. Помогите человеку, за которым вы осуществляете уход, безопасно питаться и предотвратить аспирационную пневмонию Люди с деменцией могут столкнуться с перечисленными ниже проблемами  Люди с деменцией могут быть не в состоянии понять, что можно или нельзя есть. Они могут есть непищевые продукты, которые находятся в пределах досягаемости, когда чувствуют голод. Поэтому храните непищевые продукты и химические вещества в труднодоступном месте.  Если у человека тяжелая стадия деменции, у него могут возникнуть трудности с глотанием, которые, в свою очередь, могут вызвать легочную инфекцию, называемую аспирационной пневмонией. Аспирационная пневмония возникает, когда пища проглатывается неправильным образом и попадает в легкие человека, а не в желудок. Это может привести к инфекции. Чтобы предотвратить эту опасную для жизни проблему, возможно, потребуется изменить методы приема пищи, питья и кормления. Модуль 4 1. Проверьте себя Как улучшить питание и предотвратить потерю веса Что бы вы посоветовали Елизавете сделать, чтобы улучшить питание Маргариты? Выберите все ответы, которые считаете подходящими  Быть гибкой, подавать еду, когда мать бодрствует  Вести записи в дневнике, что и как часто ест мама  Убедиться, что у Маргариты есть доступ к продуктам, которые она любит 134 У р о к 2 . П р и е м п и щ и , н ап и тк о в и п р о ф и л ак ти к а п р о б л е м с о з д о р о в ье м iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м Несъедобные вещи У Владислава уже 10 лет деменция, и за ним ухаживает его жена Элла. Элла внимательно наблюдает за мужем в течение дня. В последнее время Элла стала замечать, что мыло, которое она кладёт на кухню и в ванную, исчезает. Также она замечает, что ее муж ест цветы, которые она покупает и ставит в вазу на обеденный стол. Она видит, как Владислав идет на кухню и по ошибке берет бутылку с соевым соусом или даже со средством для мытья посуды, чтобы попить. Модуль 4 2. Проверьте себя Несъедобные вещи Как, по-вашему, стоит поступить Элле? Выберите все ответы, которые считаете подходящими  Понять, что бытовую химию, в том числе жидкость для мытья посуды, необходимо хранить в закрытом шкафу  Оставить часть используемых в быту непищевых продуктов в пределах досягаемости, поскольку Владиславу следует научиться тому, что их есть нельзя 135 У р о к 2 . П р и е м п и щ и , н ап и тк о в и п р о ф и л ак ти к а п р о б л е м с о з д о р о в ье м iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м Помощь человеку для безопасного приема пищи Луиза прикована к постели и живет с деменцией уже 10 лет. Ее муж Владимир помогает ей принимать пищу. Недавно он заметил, что Луиза стала с трудом проглатывать даже мягкую пищу, которую он готовит для нее. Также он заметил, что она кашляет, когда что-нибудь пьет. Позже у нее поднялась температура, и ее госпитализировали в больницу. Луизе диагностировали аспирационную пневмонию. После месяца лечения в больнице Луизе стало лучше, и ее выписали домой. Врач назначает Луизе здоровое и мягкое питание и рекомендует использовать загустители для напитков для предотвращения аспирационной пневмонии в будущем. Модуль 4 3. Проверьте себя Помощь человеку для безопасного приема пищи Как, по-вашему, следует поступить Владимиру? Выберите все ответы, которые считаете подходящими  Научиться готовить для Луизы здоровую мягкую пищу и загущенные напитки  Не обращать внимание на то, как сидит Луиза во время приема пищи Совет Здоровую мягкую пищу можно приготовить вручную, без использования блендера. Загущенные напитки можно приготовить, добавляя в воду или другие жидкости кукурузную муку при нагреве и помешивая до загустения. Примечание: во многих странах в супермаркетах продаются специальные смеси-загустители. 136 У р о к 2 . П р и е м п и щ и , н ап и тк о в и п р о ф и л ак ти к а п р о б л е м с о з д о р о в ье м iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м Отлично, вы закончили данный урок! О Т В Е Т Ы – О б е сп е че н и е е ж е д н е в н о го у хо д а. У р о к 2 Модуль 4 iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м Краткий обзор того, что вы узнали  Вы можете скорректировать режим питания человека, за которым вы ухаживаете, чтобы улучшить качество питания  Вы можете помочь человеку с деменцией есть и пить безопасно, если будете хранить несъедобные вещи и бытовую химию в труднодоступном месте  Вы можете предотвратить аспирационную пневмонию за счет того, что будете предлагать своему близкому человеку подходящие ему по консистенции продукты питания и напитки, а также будете следить за тем, чтобы человек во время приема пищи сидел ровно и с прямой спиной 137 Модуль 4 iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м ОТВЕТЫ - Обеспечение ежедневного ухода Урок 2. Прием пищи, питья и профилактика проблем со здоровьем 1. Проверьте себя Как улучшить питание и предотвратить потерю веса Что бы вы посоветовали Елизавете сделать, чтобы улучшить питание Маргариты? Быть гибкой, подавать еду, когда ее мать бодрствует. Это удачный ответ. Людям на поздних стадиях деменции требуется больше времени для отдыха, поэтому гибкость в части планирования времени приема пищи будет очень полезна, поскольку иначе есть риск, что они пропустят время приема пищи из-за сна. Вести дневник записей о том, что и как часто ела ее мать. Это удачный ответ. Вести записи о том, что ели люди с деменцией – это важно. Таким образом лицо, осуществляющее уход, сможет лучше понять, сколько и какой пищи нужно для того, чтобы составить полноценный рацион питания. Убедиться, что у Маргариты есть доступ к продуктам, которые она любит. Это удачный ответ. Елизавете нужно выяснить, какая еда Маргарите нравилась до диагностирования деменции? Что ей нравится есть сейчас? 138 О Т В Е Т Ы – О б е сп е че н и е е ж е д н е в н о го у хо д а. У р о к 2 Модуль 4 iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м 2. Проверьте себя Несъедобные вещи Как, по-вашему, следует поступить Элле? Понять, что бытовую химию, в том числе жидкость для мытья посуды, необходимо хранить в закрытом шкафу. Это удачный ответ. Хранение таких опасных вещей вне досягаемости поможет защитить человека с деменцией. Оставить часть используемых в быту непищевых продуктов в пределах досягаемости, поскольку Владиславу следует научиться тому, что их есть нельзя. Это неудачный ответ. У людей на поздних стадиях деменции может меняться представление о том, что они могут, а что не могут есть. Очень важно хранить опасные вещи в недоступном для них месте. 3. Проверьте себя Помощь человеку в безопасном приеме пищи Как Владимир может помочь Луизе? Научиться готовить для Луизы здоровую мягкую пищу и загущенные напитки. Это удачный ответ. Приготовление здоровой и мягкой пищи, а также сгущенных напитков позволит избежать проблем со здоровьем, а также позволит людям с деменцией продолжать самостоятельно есть, пить и поддерживать здоровый вес Не обращать внимание на то, как сидит Луиза, когда ей помогают во время приема пищи. Это неудачный ответ. Нужно постараться, чтобы Луиза сидела ровно и с прямой спиной, поскольку так ей будет легче есть и пить, и это поможет предотвратить аспирационную пневмонию. 139 О Т В Е Т Ы – О б е сп е че н и е е ж е д н е в н о го у хо д а. У р о к 2 Урок 3. Использование туалета и уход при недержании Почему этот урок важен? Ошибки при пользовании туалетом и недержание мочи могут привести к возникновению у человека с деменцией инфекций и других проблем со здоровьем, а также к низкой самооценке и прекращению социальной активности. Каким образом этот урок поможет мне? Данный урок поможет вам обратить внимание на вопросы здоровья и помогать человеку, за которым вы ухаживаете, при использовании туалета и в уходе за ним при недержании. Что я смогу узнать? 1. Возможные решения в случае таких проблем, как мочеиспускание на пол или недержание мочи. 2. Использование гигиенических средств и приспособлений в случае недержания 1. Возможные решения в случае таких проблем, как мочеиспускание на пол или недержание мочи Мочеиспускание на пол Деменция может повлиять на способность человека находить дорогу в ванную комнату и идентифицировать туалет и/или туалетное сиденье. В таких ситуациях вы не должны обвинять человека с деменцией или наказывать его, поскольку такая реакция вызовет стресс и у него, и у вас. Небольшие изменения в вашем доме могут помочь таким людям пользоваться ванной комнатой. Модуль 4 У р о к 3 . И сп о л ьз о в ан и е т у а л е та и у х о д п р и н е д е р ж ан и и iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м 140 Рассмотрим пример Алина осуществляет уход за своим мужем Антоном, у которого несколько лет назад была обнаружена сосудистая деменция. Антон в состоянии самостоятельно, без чьей-либо помощи, сходить в туалет, но недавно Алина увидела, как Антон мочится на пол рядом с туалетом. Модуль 4 1. Проверьте себя Как предотвратить мочеиспускание на пол Как, по-вашему, следует реагировать Алине? Выберите правильный ответ  Внести простые изменения в обстановку и одежду, например, закрепить на дверях туалета и ванной комнаты соответствующие картинки, использовать туалетные сиденья контрастного цвета или сменить брюки Антона на такие, в которых не используется ремень, чтобы ему было удобнее снимать их  Сказать своему супругу Антону, что он создает проблемы, и в качестве наказания не взять его на прогулку Совет Ниже приведено несколько советов на случай, если человек, за которым вы ухаживаете, испытывает трудности при пользовании туалетом.  Разместите на двери туалета изображение, чтобы человеку было легче его найти  Показывайте дорогу в туалет, если человек сам не может сориентироваться  Предусмотрите ночники в коридоре по пути из спальни в туалет  Используйте туалетные сиденья контрастных цветов  Замените брюки человека на такие, которые легче снимать  Если человек забыл, как пользоваться туалетом, терпеливо объясните ему последовательность действий 141 У р о к 3 . И сп о л ьз о в ан и е т у а л е та и у х о д п р и н е д е р ж ан и и iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м Какие еще факторы могут влиять на ситуацию с мочеиспусканием на пол или недержанием мочи? Влияющие факторы Рекомендуемые решения Слишком далеко идти до туалета ● Проводите человека, за которым вы ухаживаете, в туалет ● Поставьте, при необходимости, в ночное время возле кровати стул-туалет Туалет находится на удалении от дома ● Предусмотрите в спальне и в доме ночники ● Поставьте возле кровати стул-туалет, чтобы человек мог воспользоваться им, не выходя из дома Человек не может найти туалет ● Разместите на двери туалета соответствующую картинку Недостаточно контрастный цвет туалетного сиденья ● Замените туалетное сиденье, выбрав более контрастный цвет Недостаточное освещение в коридоре ● Обеспечьте достаточное освещение в коридоре Недостаточное освещение в самом туалете ● Обеспечьте достаточное освещение в туалете Модуль 4 142 У р о к 3 . И сп о л ьз о в ан и е т у а л е та и у х о д п р и н е д е р ж ан и и iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м Влияющие факторы Рекомендуемые решения Узкие двери в туалет, не позволяющие человеку нормально войти или въехать на инвалидном кресле ● Расширьте дверной проем, чтобы человек мог нормально войти или въехать в туалет на инвалидном кресле Нарушения зрения ● В течение дня сопровождайте человека, за которым вы ухаживаете, в туалет ● Поставьте в ночное время возле кровати стул-туалет Человек не способен самостоятельно снять брюки ● Замените брюки на такие, которые легко расстегивать и снимать ● Помогайте человеку, за которым вы ухаживаете, надевать и застегивать брюки при необходимости Человек забывает, что нужно делать в туалете ● Напоминайте человеку, за которым вы ухаживаете, о том, что необходимо сделать ● Терпеливо объясняйте последовательность действий по пользованию туалетом Модуль 4 143 У р о к 3 . И сп о л ьз о в ан и е т у а л е та и у х о д п р и н е д е р ж ан и и iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м Мочеиспускание в общественных местах Деменция может мешать человеку нормально объяснить свои потребности, например, необходимость сходить в туалет или ванную комнату. Кроме того, деменция может влиять на мнение человека о том, что является нормальным и чего не следует делать в общественных местах. Вы можете предотвратить инциденты недержания посредством соблюдения стандартного распорядка дня, в соответствии с которым вы будете помогать человеку, за которым ухаживаете, посещать туалет. Полезно будет выяснить, как часто этот человек посещал туалет до того, как был поставлен диагноз деменция. Также вы можете определить, пора ли человеку, за которым вы ухаживаете, идти в туалетную комнату, исходя из его поведения, например, возбужден ли он, испытывает ли стресс, становится ли беспокойным или тревожным. Рассмотрим пример Кирилл присматривает за своей матерью Галиной, которой 5 лет назад диагностировали деменцию. Обычно Кирилл берет свою мать с собой за покупками в магазины, расположенные по соседству, поскольку ей нравится общаться с людьми. Недавно Кирилл заметил, что его мать потеряла контроль над мочевым пузырем во время такой прогулки. Модуль 4 2. Проверьте себя Как справляться с недержанием мочи Как, по-вашему, следует реагировать Кириллу? Выберите правильный ответ  Поскольку для Кирилла такая ситуация неловкая, ему следует перестать водить свою мать по магазинам  Кириллу следует контролировать, чтобы перед тем, как отправиться по магазинам, его мать сходила в туалет 144 У р о к 3 . И сп о л ьз о в ан и е т у а л е та и у х о д п р и н е д е р ж ан и и iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м Чтобы лучше контролировать потенциальное недержание мочи или кала, полезно заполнять дневник посещения туалета. График посещения туалета Время Число походов в туалет Количество раз, когда произошло недержание мочи или кала Возможные причины данной ситуации, по вашим наблюдениям? 06:00-09:00 09:00–12:00 12:00–15:00 15:00–18:00 18:00–21:00 21:00–00:00 00:00–03:00 03:00–06:00 Дата: _____________________ Модуль 4 145 У р о к 3 . И сп о л ьз о в ан и е т у а л е та и у х о д п р и н е д е р ж ан и и iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м 2. Использование гигиенических средств и приспособлений в случае недержания На поздних стадиях деменции человек может быть не в состоянии контролировать мочеиспускание и дефекацию. Перед тем, как использовать какие-либо гигиенические средства и приспособления в случае недержания, вам следует посоветоваться со специалистом, чтобы он помог вам определить причины недержания, поскольку они могут быть излечимы и, следовательно, обратимы. Модуль 4 Совет Существует огромное количество одноразовых и/или многоразовых гигиенических средств, прокладок и приспособлений, которые используются при недержании. При выборе продукции вам следует учесть ее стоимость, эффективность, комфорт и удобство в использовании. Для лежачих мужчин хорошим решением может стать использование мочеприёмников. Некоторые из них предусматривают предотвращение вытекания мочи в обратном направлении. 146 У р о к 3 . И сп о л ьз о в ан и е т у а л е та и у х о д п р и н е д е р ж ан и и iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м Рассмотрим пример У Наташи поздняя стадия болезни Альцгеймера. Она проживает вместе с семьей сына. За Наташей ухаживает ее невестка Марина. Поскольку Наташа не может контролировать мочеиспускание и дефекацию, врач предложил Марине попробовать использовать урологические прокладки. Сначала Марина столкнулась с рядом проблем:  Наташа постоянно вытаскивала прокладку и кидала ее на пол  Даже при использовании прокладки нижнее белье Наташи оставалось влажным  У Наташи появились воспаления на коже в области гениталий Модуль 4 3. Проверьте себя Использование средств личной гигиены Как, по-вашему, следует реагировать Марине? Выберите правильный ответ  Марине следует заставить Наташу пользоваться прокладками  Марине следует напоминать своей свекрови посещать ванную комнату в определенные часы, если она не делает этого самостоятельно 147 У р о к 3 . И сп о л ьз о в ан и е т у а л е та и у х о д п р и н е д е р ж ан и и iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м Совет Ниже приведено несколько советов по уходу в случае недержания. Проблемы Возможные причины Рекомендуемое решение Постоянное вытаскивание прокладки и бросание ее на пол  Человек чувствует себя некомфортно с прокладкой  Размер прокладки неправильный  Прокладка мокрая и нуждается в замене  Проверьте, подходящего ли размера выбраны прокладки  Своевременно меняйте ставшие влажными прокладки  Проконсультируйтесь с врачом относительно поведения человека в такой ситуации Нижнее белье остается мокрым даже при использовании урологических прокладок  Неправильный размер прокладки  Отсутствует график посещения туалета  Используйте прокладки нужного типа и нужного размера  Установите график посещения туалета, чтобы минимизировать использование прокладок Воспаление или раздражение кожи в области гениталий  Прокладки повреждают кожу  Неподходящий размер прокладки и несвоевременная замена намокших прокладок могут привести к возникновению кожной инфекции  Подберите подходящий тип и размер прокладок  Вовремя меняйте намокшие прокладки и поддерживайте гигиену в области гениталий  Используйте защитные кремы или лосьоны, которые будут поддерживать здоровое состояние кожи Лихорадка, боль, сильный запах мочи  Инфекции мочевыводящих путей провоцируются рядом факторов, включая недержание мочи и плохую гигиену в области гениталий  Посетите врача  Поддерживайте потребление 6-8 стаканов воды или сока в день, за исключением случаев, когда человек должен ограничивать потребление жидкости  Поддерживайте надлежащую гигиену в области гениталий Модуль 4 148 У р о к 3 . И сп о л ьз о в ан и е т у а л е та и у х о д п р и н е д е р ж ан и и iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м Отлично, вы закончили данный урок! Модуль 4 Краткий обзор того, что вы узнали  Не обвиняйте человека, если случилась ситуация, связанная с мочеиспусканием на пол или недержанием  Измените обстановку в квартире, чтобы сократить количество случаев недержания (например, повесьте изображение туалета на дверь ванной комнаты)  Чтобы сократить количество инцидентов, регулярно отводите человека с деменцией в туалет  Определите периодичность посещений туалета, основываясь на том, каковы были привычки у человека до того, как была выявлена деменция  Если такие изменения не помогут, то приобретите соответствующие гигиенические средства и приспособления  Помните, что при неправильном использовании гигиенические средства, применяемые при недержании, могут вызывать раздражение кожи и инфекции  Соблюдайте надлежащую гигиену области гениталий, чтобы снизить риск инфекции мочевыводящих путей  Если человеку с деменцией не предписано ограничение приема жидкости, то старайтесь, чтобы он выпивал 6-8 стаканов воды или сока в день для предотвращения инфекции мочевыводящих путей Совет Больше советов о том, как контролировать свое эмоциональное восприятие см. в Уроке 3. Мыслить по-другому в Модуле 3. 149 У р о к 3 . И сп о л ьз о в ан и е т у а л е та и у х о д п р и н е д е р ж ан и и iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м О Т В Е Т Ы - О б е сп е че н и е е ж е д н е в н о го у хо д а. У р о к 3 Модуль 4 ОТВЕТЫ - Обеспечение ежедневного ухода Урок 3. Использование туалета и уход при недержании 1. Проверьте себя Как предотвратить мочеиспускание на пол Как, по-вашему, следует реагировать Алине? Внести простые изменения в обстановку и одежду, например, закрепить на дверях туалета и ванной комнаты соответствующие картинки, использовать туалетные сиденья контрастного цвета или сменить брюки Антона на такие, в которых не используется ремень, чтобы ему было удобнее снимать их Это самая правильная реакция. Люди с деменцией могут испытывать трудности с тем, чтобы найти туалет и правильно воспользоваться им, поэтому такие изменения могут помочь Антону. Сказать своему супругу Антону, что он создает проблемы, и в качестве наказания не взять на ежедневную прогулку. Это неправильное решение. Вам никогда не следует угрожать таким образом людям с деменцией. Антону будет очень стыдно и неловко, такая реакция может сильно опечалить его. 150 iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м Модуль 4 2. Проверьте себя Как справляться с недержанием мочи Как, по-вашему, следует реагировать Кириллу? Поскольку для Кирилла такая ситуация неловкая, ему следует перестать водить свою мать по магазинам. Это не самый удачный ответ, поскольку его мать будет лишена важного для нее и доставляющего удовольствие дела. Кириллу следует контролировать, чтобы перед тем, как отправиться по магазинам, его мать сходила в туалет. Это удачный ответ. Это очень хороший способ помочь Галине предотвратить недержание мочи. 3. Проверьте себя Использование средств личной гигиены Как, по-вашему, следует реагировать Марине? Марине следует заставить Наташу пользоваться прокладками. Это неправильный ответ! Очень важно выяснить, почему человек с деменцией может чувствовать дискомфорт при использовании прокладки. Правильно ли выбран размер прокладки? Или прокладка намокла и необходимо ее заменить? Марине следует напоминать своей свекрови пользоваться туалетом в определенные часы, если она не делает этого самостоятельно. Это самая правильная реакция. Запланированные посещения туалета могут помочь минимизировать количество случаев недержания и необходимости замены прокладки. 151 О Т В Е Т Ы - О б е сп е че н и е е ж е д н е в н о го у хо д а. У р о к 3 iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м Почему этот урок важен? Деменция влияет на способность людей поддерживать личную гигиену, например, чистить зубы, принимать душ/ванну и расчесывать волосы. Следовательно, очень важно помогать человеку ухаживать за собой. Ненадлежащая личная гигиена может привести к возникновению инфекций, низкой самооценке и прекращению социальной активности человека с деменцией. Каким образом этот урок поможет мне? Данный урок поможет вам продумать вопросы здоровья человека, за которым вы ухаживаете, и помочь ему в части соблюдения личной гигиены. Что я смогу узнать? 1. Изменение окружающего пространства с целью упрощения процесса соблюдения личной гигиены. 2. Советы по ежедневной процедуре одевания, уходу за ротовой полостью и помощи в проведении водных процедур. 1. Изменение окружающего пространства с целью упростить личную гигиену Человек может быть неспособен поддерживать личную гигиену по разным причинам. Одна из причин заключается в том, что люди, живущие с деменцией, могут забывать где находятся предметы личной гигиены и для каких целей служит тот или иной предмет. Например, если он не может найти зубную щетку из-за проблем с памятью, то ему будет трудно почистить зубы. Однако, вы можете немного изменить окружающее пространство, чтобы человеку легче было найти необходимые предметы. Модуль 4 У р ок 4 . Л и чн ая г и ги ен а iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м Урок 4. Личная гигиена 152 Рассмотрим пример У Мариам болезнь Альцгеймера, но она в состоянии без помощи членов семьи поддерживать личную гигиену. Недавно ее муж Руслан заметил, что она села за стол завтракать в ночной рубашке, с неумытым лицом, с непричесанными волосами и без обычного макияжа. Возможны разные причины, по которым Мариам перестала приводить себя в порядок перед завтраком. Одной из них может быть депрессия. Более подробно о депрессии см. Урок 4. Депрессия, тревожность или апатия в Модуле 5. 1. Проверьте себя Содействие личной гигиене Как, по вашему мнению, следует отреагировать Руслану? Выберите правильный ответ  Расположить предметы личной гигиены в порядке их использования и подписать каждый большими печатными буквами и разным цветом, чтобы Мариам могла все прочитать  Попросить невестку проводить Мариам в ванную комнату и помочь ей умыться и переодеться, а после этого присоединиться к завтраку Совет Ниже приведено несколько советов, как помочь человеку с деменцией самостоятельно ухаживать за собой:  Чтобы он мог найти ванную комнату или туалет, прикрепите табличку с изображением или словами на дверь или самостоятельно провожайте человека в ванную комнату или туалет  Чтобы ему было легче находить предметы личной гигиены, сделайте так, чтобы эти предметы были более заметны, подпишите их, расположите последовательно, используйте контрастные цвета  Чтобы помочь открывать и закрывать кран, используйте цветные таблички, указывающие направления движений для открытия и закрытия крана, объясняйте человеку, как открывать и закрывать кран, помогайте при необходимости Модуль 4 У р о к 4 . Л и чн ая г и ги е н а iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м 153 2. Советы по ежедневной процедуре одевания, уходу за ротовой полостью и помощи в проведении водных процедур Трудности с выбором нужной одежды или с тем, как одеться надлежащим образом Деменция может повлиять на способность человека выбирать одежду и одеваться надлежащим образом. Вы можете помогать человеку, за котором ухаживаете, выбирать одежду и одеваться так, чтобы максимально использовать сохраняющиеся у него навыки. Вам не следует брать на себя те задачи, которые человек с деменцией может выполнять самостоятельно. Рассмотрим пример У Анатолия болезнь Альцгеймера, уход за ним осуществляет его жена Дарья. Анатолий привык вечером выбирать одежду, которую он наденет на следующий день. Недавно Дарья обнаружила, что Анатолий стал забывать это делать и начал надевать одну и ту же одежду каждый день. Также она заметила, что Анатолий застегивает не все пуговицы на рубашке, не застегивает ремень и забывает завязать шнурки. 2. Проверьте себя Одевание Как, по-вашему, следует реагировать Дарье? Выберите правильный ответ  Сказать Анатолию, что ему не следует быть таким неряшливым и самой выбирать одежду и одевать его  Напоминать Анатолию накануне вечером выбирать одежду, подсказывать, что необходимо застегивать пуговицы и ремень, а также завязывать шнурки. Или посоветовать ему надевать брюки, которые можно носить без ремня и носить обувь без шнурков У р ок 4 . Л и чн ая г и ги ен а 154 Модуль 4 У р о к 4 . Л и чн ая г и ги е н а iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м Трудности при чистке зубов Деменция влияет не только на память, но и на способности в части организации, координации и концентрации, которые необходимы для ухода за ротовой полостью. Ненадлежащий уход за ротовой полостью может стать одной из причин плохого аппетита, инфекций зубов и десен, а также иных проблем со здоровьем. Когда вы помогаете человеку чистить зубы, то цель состоит в том, чтобы он по максимуму делал это сам, исходя из сохраняющихся у него навыков. Рассмотрим пример У Игоря болезнь Альцгеймера, но он может чистить зубы без посторонней помощи. Недавно жена Игоря, Лиля, заметила, что ее муж оставляет за собой большой беспорядок в ванной: пол и столешница забрызганы и испачканы водой и зубной пастой. Также она стала замечать, что ее муж не в состоянии почистить зубы так, как он делал это раньше, а также он не может самостоятельно вставить свои зубные протезы. 2. Проверьте себя Содействие уходу за ротовой полостью Как, по-вашему, следует реагировать Лиле? Выберите правильный ответ  Самостоятельно поставить Игорю зубные протезы, не спрашивая его, как он к этому отнесется  Дать Игорю пошаговую инструкцию, как чистить зубы, и хвалить его всякий раз, когда он делает это правильно У р ок 4 . Л и чн ая г и ги ен а 155 Модуль 4 У р о к 4 . Л и чн ая г и ги е н а iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м 1. Упражнение Выберите из списка ниже все действия, касающиеся процесса ухода за ротовой полостью, в которых человеку, за которым вы ухаживаете, требуется помощь  Выдавливание зубной пасты на зубную щетку  Чистка зубов  Споласкивание и промывание ротовой полости  Использование зубной нити или зубочистки  Нанесение бальзама на губы, если необходимо их увлажнение  Проверка признаков инфекции ротовой полости или больных зубов, если это необходимо  Снятие, промывание, очистка и хранение зубных протезов, если это необходимо 156 Модуль 4 У р о к 4 . Л и чн ая г и ги е н а iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м Трудности при уходе за собой и принятии ванны/душа Деменция может также влиять на способность человека мыть голову и принимать душ или ванну. Человек, живущий с деменцией, может рассматривать помощь в личной гигиене как вмешательство в свое личное пространство или даже как угрозу безопасности. Поэтому он может отказываться от любой помощи или сопротивляться ей. Рассмотрим пример У Павла болезнь Альцгеймера, и за ним ухаживает его жена Юлианна. В силу возраста, у Юлианны уже не хватает сил помогать Павлу мыться, поэтому семья приняла решение, что три их зятя могут по очереди помогать Павлу принимать душ. Старший зять хорошо относится к Павлу и заверил его, что сможет помочь ему принять душ, не доставляя никакого дискомфорта. Он сопроводил Павла в ванную комнату и начал помогать раздеваться. Неожиданно Павел оттолкнул его, стал кричать и прогонять зятя 2. Проверьте себя Сопротивление помощи при принятии душа или ванны Как, по-вашему, следует реагировать семье Павла? Выберите правильный ответ  Поскольку семья понимает, что Павел принял зятя за постороннего человека, то Юлианна принимает решение, что будет присутствовать в ванной комнате в то время, когда их зять будет помогать Павлу с купанием  Им следует сказать Павлу, что он должен быть благодарен за помощь, которую получает, и если он будет продолжать вести себя подобным образом, то они отправят его в дом престарелых 157 Модуль 4 У р о к 4 . Л и чн ая г и ги е н а iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м Когда вы помогаете человеку поддерживать личную гигиену, спрашивайте его о том, в какой форме он хотел бы получить такую помощь, и при возможности обязательно учитывайте его пожелания. Заверьте его, что он будет находиться в безопасности и не почувствует дискомфорта. Люди е с деменцией могут оказывать сопротивление, когда им помогают поддерживать личную гигиену, или даже вести себя агрессивно, как было показано на примере Павла. Чтобы узнать больше о том, как предотвратить агрессию или как вести себя во время ее проявления, смотрите Урок 3. Агрессия в Модуле 5. Совет Ниже приведено несколько советов относительно помощи при водных процедурах:  Выясните, в какое время суток человек, за которым вы ухаживаете, предпочитает принимать душ/ванну.  Перейдите от принятия душа/ванны на обтирание тела мокрой губкой (примечание: организовать принятие ванны наиболее сложно, поскольку в ванне можно упасть, и, кроме того, лицу, осуществляющему уход, может быть тяжело помогать человеку выбраться из ванны)  Если человек принимает душ или ванну, то поверхность должна быть не скользкой, либо, чтобы снизить риск падения, должен использоваться специальный коврик для душа.  Могут помочь адаптивные сиденья или приспособления, такие как поручни и стулья для душа.  Если человек, живущий с деменцией, боится воды, то постарайтесь сделать напор воды поменьше. 158 Модуль 4 У р о к 4 . Л и чн ая г и ги е н а iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м 2. Упражнение Выберите все действия в процессе поддержания личной гигиены, в которых человеку, за которым вы ухаживаете, требуется помощь. Пошагово помогите ему научиться выполнять необходимые действия.  Выбор одежды для носки в течение дня  Мытье головы/тела во время принятия душа/ванны  Выкладывание на пол противоскользящих ковриков  Бритье  Снятие и надевание пижамы  Использование полотенца для того, чтобы вытереть волосы/тело  Мытье и вытирание рук  Применение увлажняющего крема или других косметических средств для тела  Мытье и вытирание лица  Проверка кожи на наличие воспалений/раздражений/язв  Мытье и вытирание ног  Одевание после душа/ванны  Мытье и вытирание области гениталий  Расчесывание волос  Вытирание всего тела после водных процедур  Использование фена для сушки волос  Смена одежды для сна на дневную  Нанесение макияжа  Подготовка к принятию душа/ванны  Подстригание ногтей на руках и ногах  Открывание крана, настройка требуемой температуры воды, подготовка к принятию ванны/душа 159 Модуль 4 У р о к 4 . Л и чн ая г и ги е н а iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м Отлично, вы закончили данный урок! Краткий обзор того, что вы узнали  Поощряйте самостоятельное осуществление человеком с деменцией личной гигиены и ухода за ротовой полостью как можно дольше в рамках сохранившихся у него навыков  Вносите изменения в окружающее пространство, например, раскладывая предметы для совершения того или иного действия в порядке их использования, поощряйте самостоятельный выбор подходящей одежды  Вовлекайте человека, за которым вы ухаживаете, в принятие решений по рутинным вопросам, например, какую именно одежду надеть в данный момент  Учитывайте, что недостаточная помощь в уходе за собой может вызвать нервозность или агрессию  Проявляйте сострадание и пытайтесь понять, почему человек сопротивляется, когда ему помогают в процедурах по поддержанию личной гигиены 160 Модуль 4 У р о к 4 . Л и чн ая г и ги е н а iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м ОТВЕТЫ - Обеспечение ежедневного ухода Урок 4. Личная гигиена 1. Проверьте себя Содействие личной гигиене Как, по-вашему, следует реагировать Алине? Расположить предметы личной гигиены в порядке их использования и подписать каждый большими печатными буквами и разным цветом, чтобы Мариам могла все прочитать. Это удачный ответ. Люди с деменцией могут терять способность находить предметы, если они не лежат на видных местах. Создание для человека адаптивной среды, учитывающей потребности пожилого человека, является очень важным аспектом. Попросить невестку проводить Мариам в ванную комнату и помочь ей умыться и переодеться, а после этого присоединиться к завтраку. Это неправильный ответ. Руслан сначала должен выяснить, почему она перестала, как раньше, приводить себя в порядок перед завтраком. Также Руслан должен спросить жену, хочет ли она, чтобы невестка помогала ей. Если не задать такой вопрос, помощь невестки может ее рассердить или расстроить 161 Модуль 4 О Т В Е Т Ы - О б е сп е че н и е е ж е д н е в н о го у хо д а. У р о к 4 iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м 3. Проверьте себя Сопротивление помощи при принятии душа или ванны Как, по-вашему, следует реагировать Лиле? Самостоятельно поставить Игорю зубные протезы, не спрашивая его, как он к этому отнесется. Это неправильный ответ. В таком случае Лиля полностью берет на себя решение всех вопросов. Такой ответ может не понравиться Игорю. Дать Игорю пошаговую инструкцию, как чистить зубы, и хвалить его всякий раз, когда он делает это правильно. Это самая правильная реакция. Игорь таким образом поддерживает уровень своей независимости и чувство собственного достоинства. 2. Проверьте себя Содействие личной гигиене Как, по-вашему, следует реагировать Дарье? Сказать Анатолию, что ему не следует быть таким неряшливым, и самой выбирать одежду и одевать его. Отвечать таким образом бесполезно. Анатолий не виноват в том, что эта задача стала для него трудной. При небольшой помощи Анатолий, возможно, сохранит способность и дальше одеваться самостоятельно Напоминать Анатолию накануне вечером выбрать одежду, подсказывать, что необходимо застегивать пуговицы и ремень, а также завязывать шнурки. Или посоветовать ему надевать брюки, которые можно носить без ремня, и носить обувь без шнурков. Вы правы! Это поможет Анатолию и дальше одеваться самостоятельно и, как следствие, сохранять чувство собственного достоинства. 162 Модуль 4 О Т В Е Т Ы - О б е сп е че н и е е ж е д н е в н о го у хо д а. У р о к 4 iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м 4. Проверьте себя Сопротивление помощи при принятии ванны или душа Как, по-вашему, следует реагировать семье Павла? Поскольку семья понимает, что Павел принял зятя за постороннего человека, то Юлианна принимает решение, что будет присутствовать в ванной комнате в то время, когда их зять будет помогать Павлу с купанием Хорошая идея! Человек с деменцией может перестать узнавать людей, которых он прекрасно знал раньше. Поэтому очень важно дать больше времени на то, чтобы сориентироваться в ситуации при общении с другими людьми. Им следует сказать Павлу, что он должен быть благодарен за помощь, которую получает, и если он будет продолжать вести себя подобным образом, то они отправят его в дом престарелых Это плохая идея. Никогда не поступайте таким образом с людьми с деменцией. Подобные высказывания не улучшат ситуацию, а только заставят Павла чувствовать себя виноватым и ненужным. 163 Модуль 4 О Т В Е Т Ы - О б е сп е че н и е е ж е д н е в н о го у хо д а. У р о к 4 iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м Почему этот урок важен? Важно поддерживать распорядок дня и выполнять все действия, к которым привык человек с деменцией, чтобы помочь ему получать удовольствие от обычной жизни. Каким образом этот урок поможет мне? Вы научитесь адаптировать распорядок дня и выполнение различных действий к текущей ситуации и по мере изменения способностей человека, живущего с деменцией. Что я смогу узнать? 1. Как составить распорядок дня для человека с деменцией. 2. Как адаптировать распорядок дня в соответствии с изменениями возможностей человека, за которым вы ухаживаете. 1. Составление распорядка дня для человека, живущего с деменцией Очень важно создать для человека с деменцией такую окружающую обстановку, которая поможет ему делать какие-то дела с удовольствием. Кстати, тот же подход актуален и в отношении вас самих. Важно стараться следовать привычному для человека с деменцией распорядку дня и выполнять все привычные действия, а также адаптировать их по мере изменения его способностей. Модуль 4 У р о к 5 . П р и я тн ы й д е н ь iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м Урок 5. Приятный день 164 Что такое распорядок дня? Распорядок дня — это действия, которые человек выполняет каждый или почти каждый день. Важно постараться продлить следование распорядку дня человеку с деменцией как можно дольше. Это будет его успокаивать и снижать стресс. Необходимо знать, что представляет собой распорядок дня данного конкретного человека. Если в какой-то промежуток времени у человека нет привычного распорядка, например, нет привычки что-то делать каждый вечер, то полезно сформировать новую привычку и регулярно следовать намеченному плану. Это может быть чаепитие, прослушивание спокойной музыки или чтение. Полезно составить определенную последовательность действий и на другие интервалы времени в течение дня, например, на время после утреннего подъема, на обеденное или послеобеденное время. Чем проще распланированные действия и чем легче следовать распорядку дня, тем больше вероятность, что он будет принят человеком, живущим с деменцией, и тем спокойнее он будет проводить время дома. Утренние часы: начало дня Полезно начинать каждый день однообразно: стандартное время подъема и последующая последовательность действий. Подумайте о том, чтобы включить в эту последовательность умывание, чистку зубов, одевание, а затем усаживание за стол для завтрака. По мере прогрессирования деменции человеку, за которым вы ухаживаете, потребуется помощь в каждой из этих процедур, но один из способов снизить стресс – это сохранить основную последовательность действий. В течение дня также важно стараться находить время для занятий, которые нравятся человеку с деменцией, например, встреча с друзьями или родственниками, прогулки, чтение, игры или просмотр передач. Такие мероприятия следует включать в план, в зависимости от того, чем интересовался человек ранее и от его текущих возможностей. На ранних стадиях деменции ваш близкий, вероятно, сможет выполнять все точно так же, как и раньше, с вашей минимальной помощью. Однако по мере прогрессирования болезни мероприятия придется немного перестроить или изменить, так чтобы человек смог продолжать в них участвовать. При составлении распорядка дня и последующей его адаптации важно проявлять гибкость и смекалку. Модуль 4 У р о к 5 . П р и я тн ы й д е н ь iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м 165 Рассмотрим пример У Марты деменция, и она привыкла после всех обычных утренних процедур утром пить чай. Ее дочь Полина очень хочет уговорить свою мать ежедневно, в соответствии с рекомендацией доктора, совершать прогулку. Полина не знает, какого распорядка обычно придерживалась ее мать раньше. Когда она приглашает Марту пойти на прогулку сразу после завтрака, Марта отказывается. 1. Проверьте себя Содействие личной гигиене Что бы вы предложили Полине? Выберите из представленных ниже вариантов правильный ответ  Если Полина предложит Марте придерживаться привычного распорядка, то есть сначала попить чаю, то, скорее всего, Марта согласится потом пойти на прогулку  Полине следует спросить Марту, что и в каком порядке она обычно предпочитает делать  Полине следует заставить Марту пойти на прогулку, поскольку это рекомендовано доктором Очень важно придерживаться распорядка дня (то есть делать все то, что человек с деменцией делал каждый или почти каждый день) как можно дольше. Это может помочь ему избежать дезориентации, волнения, беспокойства и скуки. Также это помогает человеку сохранять чувство собственного достоинства. Представьте на минуту, как вы бы чувствовали себя, если бы кто-то попытался изменить привычный вам распорядок дня? Модуль 4 У р о к 5 . П р и я тн ы й д е н ь iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м 166 Помните 2. Адаптация распорядка дня в соответствии с изменениями возможностей человека, за которым вы ухаживаете Важно адаптировать распорядок дня по мере изменения способностей человека с деменцией. Вот несколько аспектов, которые следует учитывать, планируя день человека с деменцией. Утром Ежедневный подъем в одно и то же время  Адаптация: возможно, потребуется ваша помощь, поскольку человек с деменцией может не справится с установкой будильника самостоятельно. Ежедневный завтрак в одно и то же время. На ранних стадиях деменции ваш подопечный, возможно, сможет готовить завтрак и кушать самостоятельно.  Адаптация: возможно, потребуется, чтобы кто-то предварительно подготовил ингредиенты для готовки или приготовил завтрак для человека с деменцией. Позднее может понадобиться еще больше помощи при приготовлении завтрака и при самом приеме пищи. Гигиенические процедуры, такие как чистка зубов, умывание, одевание. На ранних стадиях человек, за которым вы ухаживаете, возможно, будет проделывать все эти действия без посторонней помощи.  Адаптация: необходимые предметы, то есть зубную щетку, зубную пасту и т.д. можно выложить в ванной комнате на видном месте, чтобы таким образом подсказать, что надо делать. На поздних стадиях деменции может понадобиться, чтобы кто-то помогал человеку с деменцией выполнять все нужные действия или даже делал это за него. Больше советов вы можете найти в Уроке 4. Личная гигиена в данном модуле. Помните  Важно продумать порядок действий на утро и придерживаться его как можно дольше.  Адаптируйте распорядок по мере изменения способностей человека с деменцией. Модуль 4 У р о к 5 . П р и я тн ы й д е н ь iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м 167 В течение дня Полезно планировать занятия, которые нравятся человеку, о котором вы заботитесь, исходя из его прежних интересов и текущих способностей. Рассмотрим пример Марте нравится печь, и раньше она всегда готовила торты и печенье для семейных встреч. Сейчас у нее деменция и она стала забывать необходимые для выпечки ингредиенты, а также порядок, в котором их следует добавлять, и этапы приготовления выпечки. Сначала Марта пользовалась кулинарной книгой, чтобы продолжить готовить выпечку, но вскоре заметила, что делать это становится все труднее. Печенье и торты были невкусными, и их приходилось выкидывать. Полина хочет помочь матери продолжить готовить 2. Проверьте себя Поддержание выполнения ранее привычных интересов и занятий в течение дня Что бы вы предложили Полине? Выберите из представленных ниже вариантов правильный ответ  Полине следует убрать посуду для выпечки и объяснить матери, что Марта больше не в состоянии готовить  Полине стоит сходить с мамой в магазин и купить готовые смеси для выпечки тортов и печенья. В таком случае потребуется минимум дополнительных действий, и Марта сможет продолжить печь  По мере изменения возможностей Марты, Полина могла бы выделить какое-то время в течение дня, чтобы готовить вместе с матерью Модуль 4 У р о к 5 . П р и я тн ы й д е н ь iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м 168 Что такое «вечернее обострение»? Иногда люди с деменцией становятся более тревожными, агрессивными или дезориентированными после обеда или в самом начале вечера. Это часто называют вечерним обострением. Это время может быть особенно тяжелым для лиц, осуществляющих уход. Точная причина вечернего обострения все еще неясна, но одной из них может быть отсутствие привычного распорядка дня. Постарайтесь занять человека каким-нибудь делом в это время Рассмотрим пример Марта любит ежедневно с 12:00 до 15:00 посещать местный культурный центр. Там она обедает и встречается с друзьями, с которыми ходит на различные досуговые занятия. Поначалу Марта ходила туда одна, но поскольку проблемы с памятью проявляются все больше, сейчас она уже не может дойти до центра самостоятельно. Полина попросила родственника, друга Марты, посещающего центр, сопровождать также и Марту. Некоторое время этот вариант работал нормально, но в конце концов родственник не смог больше брать с собой Марту. Полина не знает, что делать, поскольку она сама не может сопровождать Марту туда каждый день. Модуль 4 3. Проверьте себя Поддержание выполнения ранее привычных интересов и занятий вне дома Что бы вы предложили Полине? Выберите из представленных ниже вариантов правильный ответ  Полина могла бы попросить другого члена семьи помочь Марте  Полина могла бы попросить кого-то не из членов её семьи помогать Марте ходить в центр, например, соседку  Полина могла бы предложить своей матери заниматься чем-нибудь, например, смотреть телевизор или слушать радио дома Помните Важно с уважением относиться к привычному для человека, за которым вы ухаживаете, распорядку дня и поддерживать такой распорядок как можно дольше. Если далее это становится уже невозможно, то нужно адаптировать распорядок, максимально продумав, как сохранить все виды деятельности, которые важны для человека с деменцией, и как поддерживать уже адаптированный распорядок как можно дольше. 169 Перед сном Вечером Марта привыкла проводить около 30 минут за чтением перед тем, как ложиться спать. Поскольку деменция прогрессирует, она больше не может нормально читать. Иногда она просто смотрит в книгу. Чтение становится для Марты все более и более сложным занятием. Полина хочет адаптировать привычку матери читать перед сном, исходя из ее текущих возможностей. Модуль 4 4. Проверьте себя Адаптация распорядка дня Что бы вы предложили Полине? Выберите из представленных ниже вариантов правильный ответ  Полина могла бы читать Марте вслух минут 15 перед тем, как она пойдет спать  Полине следует забрать все книги из комнаты Марты  Полина может подобрать несколько книг, в которых больше картинок и меньше слов, или предложить Марте слушать аудиокниги Совет  Установите и как можно дольше поддерживайте распорядок на протяжении всего дня: утро, послеобеденное время и вечернее время. При этом будьте готовы со временем адаптировать занятия в соответствии с возможностями человека с деменцией.  В ряде случаев полезно будет распечатывать ежедневный распорядок дня на отдельном листе и размещать его на видном месте. У р о к 5 . П р и я тн ы й д е н ь iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м 170 Знаете ли вы какие-либо привычные занятия для человека с деменцией, за которым вы ухаживаете? Напишите все, что вы знаете или думаете относительно привычных занятий человека, за которым вы ухаживаете, а также подумайте, как их можно было бы адаптировать. 1. Упражнение Модуль 4 У р о к 5 . П р и я тн ы й д е н ь iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м 171 Отлично, вы закончили данный урок! Модуль 4 Краткий обзор того, что вы узнали  Если человек страдает деменцией, то очень важно составить для него распорядок дня.  Старайтесь придерживаться распорядка дня, аналогичного тому, который был у человека до того, как у него подтвердилась деменция.  Будьте готовы адаптировать распорядок дня по мере изменения способностей человека с деменцией У р о к 5 . П р и я тн ы й д е н ь iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м 172 Модуль 4 ОТВЕТЫ - Обеспечение ежедневного ухода Урок 5. Приятный день 1. Проверьте себя Утренний распорядок дня Что бы вы предложили Полине? Если Полина предложит придерживаться привычного распорядка, то есть сначала попить чаю, то, скорее всего, Марта согласится потом пойти на прогулку. Правильно! Такое решение поможет Марте сохранить привычный распорядок. Полине следует спросить Марту, что и в каком порядке она обычно предпочитает делать. Совершенно верно! Полина может выяснить, каков был стандартный распорядок Марты. Однако это сработает только в том случае, если Марта находится на средних стадиях развития деменции. На более поздних стадиях Марта, возможно, будет не в состоянии вспомнить свой стандартный распорядок. Полине следует заставить Марту пойти на прогулку, поскольку это рекомендовано доктором. Реагировать таким образом не очень хорошо, поскольку Марта может заволноваться и расстроиться. 173 О Т В Е Т Ы - О б е сп е че н и е е ж е д н е в н о го у хо д а. У р о к 5 iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м Модуль 4 2. Проверьте себя Поддержание выполнения ранее привычных интересов и занятий в течение дня Что бы вы предложили Полине? Полине следует убрать противни и формы для выпечки и объяснить матери, что Марта больше не в состоянии этим заниматься. Такое решение нельзя назвать полезным. Полина не постаралась и не предложила какую-то альтернативу, чтобы помочь своей матери, поэтому Марта может сильно расстроиться. Полине следует сходить с мамой в магазин и купить готовые смеси для выпечки тортов и печенья. В таком случае потребуется минимум дополнительных действий, и Марта сможет продолжить готовить выпечку. Это хорошее предложение. В этом случае мы с уважением относимся к привычному для Марты распорядку дня, но адаптируем занятия к ее текущим возможностям. По мере изменения возможностей Марты, Полина могла бы выделить какое-то время в течение дня, чтобы заниматься готовкой и выпечкой вместе с матерью. Это прекрасный план на будущее! Он позволит Марте продолжать привычные занятия и получать необходимую поддержку. 174 О Т В Е Т Ы - О б е сп е че н и е е ж е д н е в н о го у хо д а. У р о к 5 iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м Модуль 4 3. Проверьте себя Поддержание выполнения ранее привычных интересов и занятий вне дома Что бы вы предложили Полине? Полина могла бы попросить другого члена семьи помочь Марте. Хорошая идея. Если кто-то может помогать на регулярной основе, то это самый лучший вариант для Марты, поскольку можно будет поддерживать привычный для нее распорядок дня и приспосабливаться к ее изменяющимся возможностям. Полина могла бы попросить кого-то не из членов семьи помогать Марте ходить в культурный центр, например, соседку. Это удачный ответ. Не всегда можно найти помощника внутри семьи, при этом иногда другие люди могут согласить помочь вам Полина могла бы предложить своей матери заниматься чем-нибудь, например, смотреть телевизор или слушать радио дома Вряд ли это будет хорошим решением на данный момент. Марта будет изолирована от других людей и не сможет присутствовать на занятиях, которые ей нравятся. На более поздних стадиях деменции, когда способности Марты изменятся еще больше, это решение может стать более подходящим вариантом. 175 О Т В Е Т Ы - О б е сп е че н и е е ж е д н е в н о го у хо д а. У р о к 5 iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м Модуль 4 4. Проверьте себя Адаптация распорядка дня Что бы вы предложили Полине? Полина могла бы читать Марте вслух минут 15 перед тем, как она пойдет спать. Хорошая идея. Это поможет Марте продолжать получать удовольствие от чтения, при этом такой вариант будет адаптирован к ее возможностям. Полине следует забрать все книги из комнаты Марты. Это неудачный ответ, поскольку в данном случае не учитывается, насколько чтение важно для Марты. Полине следует понять, что она и мама могут заниматься чтением вместе, просто нужно немного адаптироваться к текущей ситуации. Полине следует подобрать несколько книг, в которых больше картинок и меньше слов или предложить Марте слушать аудиокниги. Это полезный вариант адаптации для людей на более поздних стадиях деменции, которые любят читать, но теперь им стало трудно читать книги с большим количеством слов. 176 О Т В Е Т Ы - О б е сп е че н и е е ж е д н е в н о го у хо д а. У р о к 5 iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м КАК СПРАВЛЯТЬСЯ С ИЗМЕНЕНИЯМИ В ПОВЕДЕНИИ Урок 1. Введение в вопрос изменения поведения Урок 2. Потеря памяти Урок 3. Агрессия Урок 4. Депрессия, тревожность или апатия Урок 5. Трудности со сном Урок 6. Бред и галлюцинации Урок 7. Повторяющееся поведение Урок 8. Прогулки и опасность потеряться Урок 9. Изменения в способности здраво мыслить Урок 10. Подведение итогов Модуль Урок 1. Введение в вопрос изменения поведения Почему этот урок важен? Деменция приводит к изменениям в поведении, мышлении и действиях людей. Это может тревожить и расстраивать не только самого человека с деменцией, но также его семью и вас как лицо, осуществляющее уход. Каким образом этот урок поможет мне? Пройдя данный урок, вы сможете повысить свои навыки управления изменениями в поведении вашего подопечного. Что я смогу узнать? 1. Какие изменения в поведении человека с деменцией могут стать особенно трудными для вас. 2. Как принимать во внимание цикл изменения поведения. 3. Различные подходы к реагированию на изменения в поведении. 1. Изменения в поведении человека с деменцией могут стать особенно трудными Деменция приводит к изменениям в поведении, мышлении и действиях людей. Это влияет не только на человека с деменцией, но также может расстраивать и тревожить лицо, осуществляющее уход, то есть в данном случае – вас. Любое поведение, которое беспокоит вас или человека, за которым вы ухаживаете, является стрессовым фактором. Этот модуль поможет вам ответить на следующие вопросы:  Как вы можете распознавать поведение, которое потенциально расстроит или вызовет напряжение в ваших отношениях с человеком, за которым вы ухаживаете  Как вы можете справляться с изменениями в поведении  Как вы можете изменить обстоятельства, чтобы предотвратить или уменьшить изменения в поведении Модуль 5 У р о к 1 . В в е д е н и е в в о п р о с и зм е н е н и я п о в е д е н и я iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м 178 2. Упражнение Были ли у человека, за которым вы ухаживаете, какие-либо из перечисленных ниже изменений в поведении? Выберите любой подходящий вариант Изменения в поведении Примеры  Потеря памяти Забывание или потеря вещей, ситуации, когда человек не в состоянии вспомнить недавние события или запомнить даты и дни недели  Агрессия Ситуации, когда человек угрожает словами, действиями или же делает что-то такое, что вас пугает  Депрессия, тревожность или апатия Ситуации, когда человек испытывает беспричинную грусть, беспокойство, страх, раздражение или злость, когда он необычно эмоционален, плачет, возбужден или обеспокоен, замыкается в себе, подавлен, апатичен или его реакции замедлены  Трудности со сном Человек не спит ночью, будит вас или других членов семьи  Бред и галлюцинации: видит или слышит то, чего нет Неверная интерпретация окружающего мира, ложные убеждения и ситуации, когда человек видит или слышит что-либо, чего в реальности не существует, или становится подозрительным по отношению к окружающим Модуль 5 У р о к 1 . В в е д е н и е в в о п р о с и зм е н е н и я п о в е д е н и я iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м 179 2. Упражнение Изменения в поведении Примеры  Повторяющееся поведение: делает или говорит что-то снова и снова Повторение одного и того же вопроса или действия снова и снова  Блуждание: бесцельное длительное хождение Человек постоянно бесцельно бродит, уходит из дома и теряется  Изменения в способности здраво мыслить Человек говорит неправильные вещи в неподходящее время, ведет себя неподобающим образом, не понимает собственных ограничений  Изменений нет Никакие из этих симптомов не присутствуют на данном этапе Модуль 5 Запомните Многое может стать причиной изменений в поведении, которые будут неприятны для вас или для человека, за которым вы ухаживаете. Это может негативным образом отразиться на ваших отношениях, а также расстроить, разозлить или привести вас в замешательство. В некоторых случаях вам может показаться, что вы не можете справиться с ситуацией. Изучив данный урок, вы узнаете, как можно предотвратить такие ситуации или как их сгладить. У р о к 1 . В в е д е н и е в в о п р о с и зм е н е н и я п о в е д е н и я iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м 180 2. Понимание цикла изменения поведения Понимание причины любых изменений в поведении и того, что происходит до и после этого поведения, очень важно. Иногда можно сгладить нежелательное поведение или даже предотвратить его. Если вы обратите внимание и разберетесь в том, что происходит перед таким проявлением необычного поведения или что провоцирует его, то у вас будет возможность сглаживать или предотвращать его Рассмотрим следующий примеры У Карины деменция, как и у человека, за которым вы ухаживаете. Уход за ней осуществляет ее супруг Андрей, аналогично тому, как вы осуществляете уход за членом вашей семьи или другом. Андрей часто спрашивает Карину, может ли она вспомнить, кто приходил к ним в гости на прошлой неделе или что она ела на ужин вчера. Карина не может вспомнить ничего из этого и начинает волноваться. В результате этого Андрей раздражается. «Андрей задает Карине вопросы» «Андрей раздражен» Что произошло перед этим? Реагирование на это поведение со стороны ухаживающего лица Поведение человека с деменцией «Карина не может ответить на вопросы и начинает волноваться» Приведенная ниже схема показывает, что происходитМодуль 5 У р о к 1 . В в е д е н и е в в о п р о с и зм е н е н и я п о в е д е н и я iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м 181 Что происходит перед таким поведением? Что, по-вашему, происходит перед тем, как Карина начинает волноваться и что вы могли бы изменить? Ниже приведены примеры. 1. Андрей задает вопросы, на которые Карина не может ответить. 2. Тон, которым Андрей задает такие вопросы, заставляет Карину нервничать. Модуль 5 1. Проверьте себя Выявление того, что происходит перед таким поведением Попробуйте сделать следующее. На полях ниже напишите свои идеи относительно того, что происходит перед тем, как Карина начинает волноваться. После того, как вы это сделаете, проверьте раздел с ответами в конце данного урока, чтобы узнать еще больше. У р о к 1 . В в е д е н и е в в о п р о с и зм е н е н и я п о в е д е н и я iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м 182 Рассмотрим, как реагирует Андрей Итак, что мы пытаемся сделать? Мы пытаемся разобраться, что происходит до того, как началось нежелательное поведение, и как реагирует лицо, осуществляющее уход, на такое поведение. Как реагирует Андрей в данном примере? Андрей становится раздраженным из-за того, что его жена Карина забыла, кто приходил к ним в гости и что она ела на ужин. У Андрея есть выбор, он может начать реагировать по-другому. Модуль 5 2. Проверьте себя Разные способы реагирования на изменение поведения Ниже приведены некоторые варианты реагирования, удачные и неудачные  Показать, что он раздражен  Сделать глубокий вдох и постараться расслабиться  Напомнить себе, что жена страдает деменцией и не по своей воле забывает какие-то вещи  В следующий раз помнить, что такие вопросы вызовут раздражение не только у него, но и у жены  Вместе с Кариной начать записывать важные события в дневник У р о к 1 . В в е д е н и е в в о п р о с и зм е н е н и я п о в е д е н и я iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м 183 3. В разных ситуациях работают разные подходы Что будет, если подход Андрея не сработает в первый раз? В разные моменты работают разные подходы, поэтому Андрею не следует отчаиваться! Он может попробовать несколько вариантов и найти тот, который будет работать. Ниже несколько примеров того, что мог бы сделать Андрей:  Он может спросить совета у других людей, например, в группах помощи и поддержки или обратиться за рекомендациями в учреждение здравоохранения.  Он может поискать информацию в интернете. Модуль 5 У р о к 1 . В в е д е н и е в в о п р о с и зм е н е н и я п о в е д е н и я iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м 184 Теперь подумайте о вашей ситуации Важно применить то, что вы только что усвоили в вашей ситуации с человеком, за которым вы ухаживаете. Используйте место ниже для заполнения информации аналогично записям в дневнике. 2. Упражнение Что вы могли бы изменить из того, что предшествовало такому поведению, чтобы сгладить или предотвратить его? Как вы могли бы реагировать в данной ситуации? Какое именно поведение больше всего тревожило или расстроило вас в прошлом месяце? Модуль 5 У р о к 1 . В в е д е н и е в в о п р о с и зм е н е н и я п о в е д е н и я iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м 185 Отлично, вы закончили данный урок! Модуль 5 Краткий обзор того, что вы узнали  Люди с деменцией могут сталкиваться с таким изменениями поведения, которые тревожат или огорчают их самих и окружающих.  Полезно выяснить, что происходит до того, как начинается нежелательное поведение, чтобы понять, каковы могли быть причины такого поведения или что может усугублять его.  Также полезно разобраться, как вы обычно реагируете на происходящее с вашим подопечным, что вы чувствуете и что вы делаете.  Сделайте глубокий вдох и подумайте о том, какой ответ будет самым щадящим для вас и для человека, за которым вы ухаживаете.  Попробуйте разные варианты и подходы к реагированию на такие ситуации, поскольку первый вариант не всегда срабатывает.  Если вы не можете справиться с какой-то ситуацией самостоятельно, обратитесь за помощью к профессионалам. У р о к 1 . В в е д е н и е в в о п р о с и зм е н е н и я п о в е д е н и я iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м 186 175 Урок 1. Введение в вопрос изменения поведенияОТВЕТЫ - Как справляться с изменениями в поведении 1. Проверьте себя Выявление того, что происходит перед таким поведением  У Карины деменция. Ей трудно вспомнить, кто приходил в гости на прошлой неделе  У Карины деменция, и она не помнит, что она ела на ужин 187 Модуль 5 О Т В Е Т Ы – К ак с п р ав л я ть ся с и зм е н е н и я м и в п о в е д е н и и . У р о к 1 iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м Модуль 5 175 2. Проверьте себя Разные способы реагирование на изменения в поведении Какие варианты реагирования были у Андрея? Показать, что он раздражен. Это не самый хороший способ реагирования. Показать свое раздражение – это неподходящий способ справиться с нежелательным поведением, он может вызвать нервозность у человека с деменцией. Сделать глубокий вдох и постараться расслабиться. Это удачный ответ. Таким образом Андрей может расслабиться и сдержать себя. Напомнить себе, что Карина страдает деменцией и не по своей воле забывает какие-то вещи. Это удачный ответ, поскольку в таком случае Андрей учитывает, что у Карины деменция. В следующий раз помнить, что если задавать Карине такие вопросы, это только вызовет раздражение, не только у него, но и у жены. Это удачный ответ, поскольку таким образом можно предотвратить повторение неприятной ситуации. Вместе с Кариной начать записывать важные события в дневник. Это удачный ответ, поскольку так они смогут иногда возвращаться к прошедшим событиям и вспоминать их, если Карина соскучится по родственникам или друзьям. 188 О Т В Е Т Ы – К ак с п р ав л я ть ся с и зм е н е н и я м и в п о в е д е н и и . У р о к 1 iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м Почему этот урок важен? Потеря памяти может быть раздражающим фактором как для человека с деменцией, так и для человека, осуществляющего уход за ним. Каким образом этот урок поможет мне? В ходе этого урока вы попрактикуетесь в некоторых способах реагирования на потерю памяти и узнаете, что может помочь вам справиться с растущей забывчивостью человека Что я смогу узнать? 1. Что такое потеря памяти? 2. Как реагировать на потерю памяти? 1. Что такое потеря памяти? У людей с деменцией со временем проявляются все большие проблемы с памятью. Сначала они могут забывать недавние события, например, куда они положили свои ключи, кошелек или какой-то документ. Они замечают, что им все труднее запоминать номера телефонов, важные даты и договоренности о встречах. Однако воспоминания о том, что было раньше, например, о своем детстве, часто сохраняются в течение длительного периода времени. Урок 2. Потеря памяти Модуль 5 У р о к 2 . П о те р я п ам я ти iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м 189 1. What is Потеря памяти? People with dementia will increasingly lose their memory over time. In the beginning, they may forget recent events, where they put their keys, their wallet or a particular piece of paper. They find it harder to remember phone numbers, important dates and appointments. However, past memories, like childhood memories, are often preserved for a longer period of time. Забывает ли что-то время от времени человек, за которым вы ухаживаете? Если так, то что именно он забывает? Запишите, пожалуйста 1. Упражнение Модуль 5 У р о к 2 . П о те р я п ам я ти iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м 190 2. Как реагировать на потерю памяти? В ходе этого урока вы попрактикуетесь в некоторых способах реагирования на потерю памяти и узнаете, что может помочь вам справиться с этим. Рассмотрим пример Аня страдает деменцией. У нее есть дочь Майя. Они живут рядом с друг к другом. Когда Майя заходит в гости к Ане, она замечает, что в холодильнике или кухонном шкафу нет продуктов. Когда Аня ходит в магазин, она часто забывает, что необходимо купить. Возможно, человек, уход за которым осуществляете вы, забывает какие-то другие вещи. 1. Проверьте себя Человек забывает купить продукты Каким образом вы посоветовали бы Майе справляться с потерей памяти у ее матери? Выберите из списка ниже все ответы, которые вы считаете подходящими  Попросить соседку ходить раз в неделю вместе с Аней в магазин за продуктами  Составить вместе с Аней список продуктов, которые надо купить, и повесить эту памятку на видном месте  Самой купить продукты для Ани  Спросить: «Мам, ты что?! У тебя же совершенно пустой холодильник!»  Сесть и составить вместе с Аней список продуктов, которые надо купить и пойти вместе за продуктами Модуль 5 У р о к 2 . П о те р я п ам я ти iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м 191 Рассмотрим другой пример Майя и Аня разговаривают по телефону. Майя стала замечать, что мама часто забывает, чем она занималась в течение дня. У Майи не хватает терпения, и она говорит матери: «Мама, ты стала забывать еще больше, чем раньше». 2. Проверьте себя Человек забывает об обычных повседневных делах Как, по-вашему, следует реагировать Майе? Выберите из списка ниже все ответы, которые вы считаете подходящими.  По телефону сказать матери, что ей необходимо делать  Спросить у матери, что она обычно делает в данный день недели. Например, понедельник – стирка; четверг – поход в магазин за продуктами  Переехать жить к матери  Навещать Аню каждые выходные и составлять список планов на каждый день недели  Нанять помощника по уходу, который будет постоянно присматривать за ее мамой  Во время разговора по телефону вместе с мамой проговорить план дел на текущий день и попросить маму записать этот план Модуль 5 У р о к 2 . П о те р я п ам я ти iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м 192 Иногда потеря памяти может быть более серьезной, как в примере, изложенном ниже Рассмотрим пример Майя приходит проведать мать и обнаруживает, что Аня не помнит, какие лекарства и в какое время она должна принимать. 3. Проверьте себя Человек забывает принимать лекарства Как, по-вашему, следует отреагировать Майе на эту ситуацию? Выберите из списка ниже все ответы, которые вы считаете подходящими  Майя оставляет возле часов памятку, на которой написано, когда и какие нужно принимать лекарства  Майя говорит: «Мам, как ты могла забыть про лекарства?!» или «Ты же знаешь, как тебе важно следить за здоровьем!»  Майя плачет, переживая о том, что ее мать теряет память  Майя вместе с мамой составляет список лекарств, которые необходимо принять. Затем Майя покупает органайзер для таблеток и раскладывает их по дням и по времени, а затем ежедневно звонит матери и напоминает ей о приеме таблеток Модуль 5 У р о к 2 . П о те р я п ам я ти iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м 193 Рассмотрим вашу ситуацию Важно применить то, что вы узнали, в вашей ситуации. Как вы могли бы помочь человеку, за которым ухаживаете, справляться с потерей памяти. Напишите несколько идей 2. Упражнение Модуль 5 У р о к 2 . П о те р я п ам я ти iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м 194 195 Отлично, вы закончили данный урок! Краткий обзор того, что вы узнали  Потеря памяти свойственна людям, живущим с деменцией.  Справляться с потерей памяти может быть непросто в эмоциональном плане.  Чтобы справляться с потерей памяти вашего подопечного, попробуйте использовать разные средства напоминания, например, записки, инструкции, памятки, органайзеры для таблеток, будильники и т.п.  Если это возможно, то вовлекайте человека, за которым вы ухаживаете, в поиск оптимального варианта его поддержки в случае проблем, связанных с потерей памяти.  Важно помнить, что человек с деменцией не виноват, поскольку он не может ничего сделать со своей забывчивостью.  Если какой-то подход не срабатывает, пробуйте другой вариант.  Учитывайте, что могут быть как удачные, так и неудачные дни.  Напоминайте сами себе, что потеря памяти – это одно из проявлений деменции.  Сделайте глубокий вдох и подумайте о том, какая реакция будет самой щадящей для вас и для человека, за которым вы ухаживаете, в случае потери памяти. Модуль 5 У р о к 2 . П о те р я п ам я ти iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м 175 Модуль 5 ОТВЕТЫ - Как справляться с изменениями в поведении Урок 2. Потеря памяти 1. Проверьте себя Человек забывает покупать продукты Что вы посоветуете Майе? Попросить соседку ходить раз в неделю вместе с Ани в магазин за продуктами. Это может помочь решить проблему. У Ани дома будут продукты, кроме того, она пообщается с соседкой. Составить вместе с Ани список продуктов, которые надо купить, и повесить эту памятку на видном месте. Это удачный ответ. Это поможет решить проблему. Аня проведет время с Майей за составлением списка покупок, а затем самостоятельно сделает покупки. Это повысит самооценку Ани Самой купить продукты для Ани. Этот ответ не очень хорош, поскольку является панической реакцией и одноразовым решением. В целом имеющаяся проблема не решается вообще. Спросить: «Мам, ты что?! У тебя ж совершенно пустой холодильник!» Этот ответ не очень хорош, поскольку Аня ничего не может сделать с тем, что забывает покупать продукты. Кроме того, ей может быть очень неловко, если выяснится, что она сделала что-то не так. Это не улучшит ситуацию. Сесть и составить вместе с Ани список продуктов, которые надо купить и пойти вместе за продуктами. Такой ответ может быть хорошим вариантом, поскольку таким образом Майя решает имеющуюся проблему. Однако, возможно, сначала лучше попробовать другой вариант. Например, вместе составить список продуктов, за которыми позже ее мама самостоятельно сходит в магазин без посторонней помощи. 196 О Т В Е Т Ы – К ак с п р ав л я ть ся с и зм е н е н и я м и в п о в е д е н и и . У р о к 2 iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м  175 Модуль 5 2. Проверьте себя Человек забывает об обычных повседневных делах Что вы посоветуете Майе? По телефону сказать своей матери, что ей необходимо делать. Этот ответ не очень хорош, поскольку, возможно, по итогам телефонного разговора ее мама не поймет и не запомнит, что ей надо сделать Спросить у матери, что она обычно делает в данный день недели. Например, понедельник – стирка; четверг – поход в магазин за продуктами. Такой вариант может оказаться хорошим, поскольку на основе такой информации Майя сможет напоминать своей матери о том, что надо сделать. Переехать жить к матери. Такой ответ нельзя назвать хорошим. Есть несколько других, менее радикальных подходов, которые Майя еще не пробовала. Навещать Аню каждые выходные и составлять список планов на каждый день недели. Это удачный ответ, поскольку это может помочь ее матери помнить необходимое. Нанять помощника по уходу, который будет постоянно присматривать за ее мамой. Такой ответ нельзя назвать хорошим. Есть несколько других, менее радикальных подходов, которые Майя еще не пробовала. Во время разговора по телефону вместе с мамой проговорить план дел на текущий день и попросить маму записать этот план. Это удачный ответ, поскольку это может помочь ее матери помнить необходимое. Майя могла бы звонить матери каждое утро в одно и то же время и вместе планировать день Ани. 197 О Т В Е Т Ы – К ак с п р ав л я ть ся с и зм е н е н и я м и в п о в е д е н и и . У р о к 2 iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м  175 Модуль 5 3. Проверьте себя Человек забывает принимать лекарства Что вы посоветуете Майе? Майя оставляет памятку возле часов, на которой написано, когда и какие нужно принимать лекарства. Возможно, было бы хорошо сделать так, поскольку такое напоминание могло бы помочь Ане помнить про прием таблеток. Майя говорит: «Мам, как ты могла забыть про лекарства?!» или «ты же знаешь, как тебе важно следить за здоровьем!» Такое реагирование бесполезно, поскольку Аня не может ничего сделать с тем, что забывает принимать лекарства. Потеря памяти – это часть деменции. Майя плачет, переживая о том, что ее мать теряет память. Это вообще не метод, который поможет справиться с потерей памяти у ее мамы. Если просто расстраиваться, это никак не решит проблему матери, которая забывает принимать лекарства. Майя вместе с мамой составляет список лекарств, которые необходимо принять. Затем Майя покупает органайзер для таблеток и раскладывает их по дням и по времени, а затем ежедневно звонит матери и напоминает ей о приеме таблеток. Это удачный ответ, поскольку такое напоминание поможет Ане принимать лекарства в нужное время и в нужный день. В некоторых органайзерах для таблеток предусмотрены таймеры и сделаны предварительные настройки, которые помогут человеку самостоятельно принимать лекарства. 198 О Т В Е Т Ы – К ак с п р ав л я ть ся с и зм е н е н и я м и в п о в е д е н и и . У р о к 2 iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м Почему этот урок важен? Время от времени люди с деменцией могут сердиться, становиться агрессивными или даже жестокими. Часто это является одним из самых сложных аспектов, с которыми приходится сталкиваться лицам, осуществляющим уход. Каким образом этот урок поможет мне? Данный урок поможет вам понять возможные причины агрессии и дать вам знания о том, как можно предотвратить агрессию и как действовать в случае ее возникновения. Что я смогу узнать? 1. Почему возникает агрессия? 2. Как реагировать на агрессивное поведение? 3. Как реагировать на продолжающуюся агрессию? 1. Почему возникает агрессия? Время от времени люди с деменцией могут сердиться, становиться агрессивными или даже жестокими. Агрессия может возникать по разным причинам. Это может быть связано с их неудовлетворенными потребностями, заболеваниями, например, с инфекцией. Также агрессию могут вызывать комбинация лекарств или побочные эффекты от их приема или что-то, что происходит в окружении человека с деменцией. Кроме того, людям с деменцией может быть трудно понимать других, правильно оценивать ситуацию при взаимодействии с другими людьми, контролировать свои чувства или выражать себя так, как они делали раньше. У человека также может произойти изменение личности или психического здоровья, которые способствуют проявлению агрессивного поведения. Иногда агрессия проявляется по отношению к людям, хорошо знакомым человеку с деменцией. Но также это может быть и агрессия по отношению к незнакомому человеку. Агрессия является одним из самых сложных аспектов, с которыми приходится сталкиваться лицам, осуществляющим уход. Урок 3. Агрессия Модуль 5 У р о к 3 . А гр е сс и я iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м 199 2. Упражнение Рассмотрим вашу ситуацию Проверьте, каков ответ – «да» или «нет» Разговаривает ли когда-либо человек, за которым вы ухаживаете, с вами или с кем-то еще в агрессивной манере?  Да  Нет Ведет ли себя когда-либо человек, за которым вы ухаживаете, с вами или с кем-то еще агрессивно?  Да  Нет Если человек внезапно начинает вести себя агрессивно, возможно, существует какая-то первопричина (например, инфекция или побочные эффекты от лекарств), с которой следует обратиться к врачу. Модуль 5 У р о к 3 . А гр е сс и я iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м 200 ПРЕДУПРЕЖДЕНИЕ! Помните ли вы о цикле изменения поведения? Это то, о чем говорилось в Уроке 1. Введение в вопрос изменения поведения: важно разбить цикл создающих напряжение реакций на три части. Это поможет понять причины агрессии и справиться с ними Реагирование на это поведение со стороны ухаживающего лица Поведение человека с деменцией Вот он: Что произошло перед этим? Модуль 5 У р о к 3 . А гр е сс и я iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м 201 Давайте посмотрим, как работает цикл, на другом примере. Артур хочет помочь своему тестю Амину принять ванну, поскольку Амину необходимо сходить к врачу. Артур говорит: «Тебе пора принять ванну». Амин отказывается. У Артура мало времени, и он тянет своего тестя за руку и говорит: «Тебе надо принять ванну, потому что ты собираешься к врачу». Амин выдергивает свою руку и сопротивляется. Он намного сильнее Артура. Артур снова тянет его и сердито говорит: «Ты должен принять ванну, потому что ты идешь к врачу и должен быть чистым». Амин злится, кричит и даже пытается оттолкнуть Артура, который, в свою очередь, расстраивается из-за сложившейся ситуации. 2. Проверьте себя Понимание агрессивного поведения Амин сердится и отказывается принимать ванну Можете ли вы разбить цикл изменения поведения в данном примере на три соответствующие части? Заполните ячейки ниже Что происходит перед таким поведением? Как проявляется нежелательное поведение? Как реагирует Артур? Модуль 5 У р о к 3 . А гр е сс и я iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м 202 2. Как реагировать на агрессивное поведение? Существует много вариантов, как реагировать на агрессивное поведение. Какие-то из них удачные, какие-то – нет. Упражнение ниже поможет вам разобраться в этом 2. Проверьте себя Понимание агрессивного поведения Как еще мог бы отреагировать Артур? Отметьте, какие варианты реагирования вы считаете удачными Артур мог бы:  Так или иначе заставить тестя начать принимать ванну  Уважительно отнестись к тестю и не вторгаться в его личное пространство. Он мог бы не хвать Амина за руку и оставить его в халате или полотенце до тех пор, пока он сам не захочет принять ванну  Включить успокаивающую музыку, которая нравится Амину и поможет ему расслабиться  Оставить его в покое и попробовать еще раз позднее  Объяснить подробно, почему Амину надо принять ванну Модуль 5 У р о к 3 . А гр е сс и я iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м 203 2. Проверьте себя Реагирование на агрессивное поведение  Артуру стоило не оставлять это дело на последний момент, а запланировать принятие ванны заранее, чтобы не создавать нервной обстановки. Вместо того, чтобы уговаривать Амина принять ванну непосредственно перед временем приема у врача, когда уже начинается суматоха, Артур мог бы постараться организовать это накануне  Перед следующим приемом ванны Артуру нужно выяснить, какое время в течение дня наиболее подходит Амину для посещения ванны, а также что он предпочитает, ванну или душ  При купании Амина оставить полотенце у него на плечах, чтобы помочь ему чувствовать себя более уверенно и чтобы ему не было холодно  Попросить кого-то еще помочь с купанием Амина  Вместо ванны организовать обтирание теплыми влажными полотенцами или специальными моющими средствами  Сказать: «Прекрати мне мешать. Ты должен принять ванну!» Модуль 5 У р о к 3 . А гр е сс и я iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м 204 3. Как реагировать на продолжающуюся агрессию? Иногда первый вариант реагирования на агрессию может не сработать. Не отчаивайтесь, попробуйте другие подходы. В разное время работают разные методы 3. Проверьте себя Продолжающееся агрессивное поведение Что мог бы сделать Артур, если бы его метод с первого раза не сработал? Отметьте, что из этого подходит  Артур мог бы попробовать несколько разных подходов и найти тот, который будет работать  Артур мог бы узнать, что делают в подобных ситуациях другие люди Напоминание Сделайте глубокий вдох и подумайте о том, какой ответ будет самым щадящим для вас и для человека, за которым вы ухаживаете. Напомните сами себе, что агрессия может быть одним из проявлений деменции или следствием другого заболевания. Модуль 5 У р о к 3 . А гр е сс и я iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м 205 2. Упражнение Рассмотрим вашу ситуацию Важно применить то, что вы только что узнали, в вашей конкретной ситуации. Проявлял ли когда-нибудь человек, за которым вы ухаживаете, агрессию по отношению к вам? Если да, то опишите в ниже отведенных для этого местах, как это происходило последний раз. Что вы могли бы сделать, чтобы изменить свою реакцию на такое поведение? Как можно было бы изменить окружающую обстановку, чтобы сделать ее более успокаивающей? Что произошло перед тем, как человек, за которым вы ухаживаете, стал проявлять агрессию? Модуль 5 У р о к 3 . А гр е сс и я iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м 206 Отлично, вы закончили данный урок! Краткий обзор того, что вы узнали  Лица, осуществляющие уход за людьми с деменцией, могут сталкиваться с такими проявлениями агрессии, как крик или отталкивание  Проявления агрессии могут очень расстраивать человека с деменцией, а также лицо, осуществляющее уход  Попробуйте изменить окружающую обстановку, чтобы сделать ее более успокаивающей и расслабляющей  Постарайтесь уважительно отнестись к человеку с деменцией; не заставляйте его силой выполнять то, что он не хочет делать.  Если какой-то подход не срабатывает, пробуйте другой.  Помните, что иногда ситуация складывается хуже, а иногда – лучше.  Напомните сами себе, что агрессия может быть одним из проявлений деменции или следствием другого заболевания.  Если человек внезапно начинает вести себя агрессивно, возможно, существует какая-то первопричина (например, инфекция или побочные действия лекарств), с которой следует обратиться к врачу.  Сделайте глубокий вдох и подумайте о том, какая реакция на ситуацию будет самой щадящей для вас и для человека, за которым вы ухаживаете. Модуль 5 У р о к 3 . А гр е сс и я iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м 207 Модуль 5 175 ОТВЕТЫ - Как справляться с изменениями в поведении Урок 3. Агрессия 1. Проверьте себя Понимание агрессивного поведения Амин сердится и отказывается принимать ванну Можете ли вы разбить цикл изменения поведения в данном примере на три соответствующие части? Заполните ячейки ниже Что происходит перед таким поведением? Как проявляется нежелательное поведение? Как реагирует Артур? Артур тянет Амина за руку и сердито говорит: «Ты должен принять ванну, потому что ты идешь к врачу и должен быть чистым». Амин ужасно расстраивается, кричит и даже пытается оттолкнуть Артура Артур тоже расстраивается 208 О Т В Е Т Ы – К ак с п р ав л я ть ся с и зм е н е н и я м и в п о в е д е н и и . У р о к 3 iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м 175 Модуль 5 2. Проверьте себя Реагирование на агрессивное поведение Как еще мог бы отреагировать Артур? Артур мог бы: Так или иначе заставить тестя начать принимать ванну. Это бесполезно, поскольку ситуация не изменится в лучшую сторону, а напротив, может ухудшиться. Уважительно отнестись к тестю и не вторгаться в его личное пространство. Он мог бы не хватать Амина за руку и оставлять его в халате или полотенце до тех пор, пока он сам не захочет принять ванну. Верно. Уважительно относиться и не вторгаться в личное пространство – это всегда правильно при уходе за человеком с деменцией. Поступая таким образом, Артур обеспечивает комфорт для Амина. Включить успокаивающую музыку, которая нравится Амину и поможет ему расслабиться. Это правильный ответ. Хотя для того, чтобы включить музыку, может понадобиться дополнительное время, такая музыка поможет успокоиться как Артуру, так и Амину. Таким образом они оба смогут немного расслабиться и уменьшить свои негативные эмоции. Оставить его в покое и попробовать еще раз позднее. Это удачный ответ. У Артура будет время успокоиться и попробовать снова, используя другую стратегию. У Амина, в свою очередь, будет время забыть неприятную ситуацию, и, возможно, он будет в более хорошем настроении. Объяснить подробно, почему Амину надо принять ванну. Этот ответ не очень хорош. Здесь не учитывается, что Амин, возможно, не поймет объяснение из-за имеющейся деменции. 209 О Т В Е Т Ы – К ак с п р ав л я ть ся с и зм е н е н и я м и в п о в е д е н и и . У р о к 3 iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м 175 Модуль 5 2. Проверьте себя Реагирование на агрессивное поведение Не делать такие дела в последний момент, а запланировать принятие ванны заранее, чтобы не создавать нервной обстановки. Чем уговаривать Амина принять ванну непосредственно перед временем приема у врача, когда уже начинается суматоха, Артур мог бы постараться организовать ванну накануне. Несмотря на то, что дополнительное время не всегда возможно выделить, этот вариант хороший. Таким образом можно снизить напряжение, возникшее между Артуром и Амином. Перед следующим приемом ванны Артуру нужно выяснить, какое время в течение дня наиболее подходит Амину для посещение ванны, а также что он предпочитает, ванну или душ. Это хороший ответ. Уважение к их обычному распорядку дня для людей с деменцией означает, что окружающие внимательно относятся к их предпочтениям. При купании Амина оставить полотенце у него на плечах, чтобы помочь ему чувствовать себя более уверенно и чтобы ему не было холодно. Это хороший ответ. Амин, возможно, стесняется раздеваться перед своим зятем или, возможно, температура воды или воздуха в ванной комнате слишком низкая. Важно поискать варианты, как сделать ситуацию более комфортной. Артур может попросить кого-то еще помочь с купанием Амина Это хороший ответ. Иногда для человека с деменцией принять при купании помощь одного из членов семьи более комфортно, нежели другого. Иногда может даже оказаться, что человеку, живущему с деменцией, будет комфортнее принять помощь незнакомого человека, чем члена семьи. 210 О Т В Е Т Ы – К ак с п р ав л я ть ся с и зм е н е н и я м и в п о в е д е н и и . У р о к 3 iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м 175 Модуль 5 2. Проверьте себя Реагирование на агрессивное поведение Вместо ванны организовать обтирание теплыми важными полотенцами или специальными моющими средствами. Это хороший ответ. Если человек с деменцией боится принимать ванну или боится потока текущей воды, то такой вариант поможет снизить стресс, и иногда вместо ванны можно прибегать к такому методу. Можно также попробовать использовать такие продукты, как сухой шампунь и средства для очищения кожи, предназначенные для гигиены пожилых людей. Сказать: «Прекрати мне мешать. Ты должен принять ванну!» Это бесполезно, поскольку не изменит ситуацию. 211 О Т В Е Т Ы – К ак с п р ав л я ть ся с и зм е н е н и я м и в п о в е д е н и и . У р о к 3 iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м 175 3. Проверьте себя Продолжающееся агрессивное поведение Что мог бы сделать Артур, если его метод с первого раза не сработал бы? Артур мог бы попробовать несколько разных подходов и найти тот, который будет работать. Артур мог бы узнать, что делают в подобных ситуациях другие люди. Модуль 5 212 О Т В Е Т Ы – К ак с п р ав л я ть ся с и зм е н е н и я м и в п о в е д е н и и . У р о к 3 iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м 1.Что такое депрессия, тревожность и апатия? Людям с деменцией свойственны депрессия, тревожность и апатия. Деменция может влиять на настроение и интерес человека к повседневной деятельности, людям и событиям. Это может быть связано с изменениями в головном мозге, но также это бывает эмоциональной реакцией на то, что с ними происходит. Человек с деменцией может испытывать грусть, беспокойство, страх, раздражение или злость, может плакать и вести себя необычно эмоционально, быть возбужденным или обеспокоенным. Также человек может замыкаться в себе, быть подавленным или демонстрировать замедленную реакцию. Все эти виды поведения свойственны состояниям депрессии и апатии. Тревога может привести к поведению, похожему на депрессию. Люди с деменцией могут беспокоиться о том, что останутся в одиночестве, о том, что не знают, кто занимается их финансами или куда пропали потерянные вещи, и находтся из-за этого в состоянии тревожности. Урок 4. Депрессия, тревожность и апатия Модуль 5 У р о к 4 . Д е п р е сс и я , тр е в о ж н о ст ь и а п ат и я iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м Почему этот урок важен? Деменция может влиять на настроение и интерес человека к повседневной деятельности, людям и событиям. Каким образом этот урок поможет мне? Этот урок поможет вам понять возможные причины депрессии и тревожности, а также улучшить ваши навыки в части предотвращения или уменьшения проблем, связанных с настроением. Что я смогу узнать? 1. Что такое депрессия, тревожность и апатия? 2. Как реагировать на ситуацию, когда человек с деменцией находится в подавленном состоянии или обеспокоен? 3. Как реагировать на ситуацию, когда человек с деменцией теряет интерес к повседневной деятельности? 213 1. Проверьте себя Реагирование на ситуацию, когда человек с деменцией чувствует себя подавленным Как Ульяна может справиться с ситуацией? Ниже несколько вариантов, что могла бы сделать или сказать Ульяна. Выберите все варианты реагирования, которые, по вашему мнению, могли бы сработать  Подойти к Егору и спокойным, ободряющим тоном сказать: «У меня есть несколько идей, как помочь тебе чувствовать себя лучше. Давай поговорим»  Сказать: «Егор, что случилось? Мне надоело видеть тебя в таком состоянии. Поднимайся и займись чем-нибудь»  Сказать: «Мужчины не плачут и не грустят так! Мы с тобой раньше так хорошо проводили время!»  Подойти и дотронуться до руки или плеча Егора: «Я знаю, что ты плохо себя чувствуешь. Я тоже. Мы сейчас вместе проходим непростое испытание»  Сесть рядом с Егором и предложить заняться чем-то приятным вместе  Вздохнуть и уйти, подумав, что она ничем здесь не поможет 2. Как реагировать на ситуацию, когда человек с деменцией находится в подавленном состоянии или обеспокоен? Рассмотрим пример У Егора деменция. Он живет со своей сестрой Ульяной. Было несколько случаев, когда Ульяна обнаруживала Егора сидящим с очень печальным видом, сгорбившимся и иногда плачущим. Ульяна пыталась развеселить его. К сожалению, ее попытки не увенчивались успехом. Модуль 5 У р о к 4 . Д е п р е сс и я , тр е в о ж н о ст ь и а п ат и я iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м 214 1. Проверьте себя Реагирование на ситуацию, когда человек с деменцией испытывает беспокойство Как, по-вашему, следует реагировать Семёну на эту ситуацию? Ниже несколько вариантов, что мог бы сделать или сказать Семён. Выберите все варианты правильного реагирования  Подумать: «Бабушка так вдет себя из-за деменции»  Сказать: «Бабушка! Сядь, ты не даешь мне смотреть телевизор»  Улыбнуться бабушке и заверить ее, что она в безопасности и находится дома  Попросить бабушку помочь ему в каком-то деле  Прибавить звук, чтобы не слышать то, что говорит бабушка, и не обращать на нее внимания  Найти наушники для телевизора и попросить бабушку вернуться к вязанию, чтобы чем-то занять ее Рассмотрим еще один пример У Аллы деменция, и она живет со своей семьей. У нее есть внук Семён. Поскольку родители Семёна работают, а он ходит в школу, то после обеда за бабушкой присматривает Семён. Семён смотрит телевизор, а его бабушка в это время занимается вязанием. В передаче по телевизору очень громко играет музыка, и люди громко разговаривают, используя вульгарную лексику. Внезапно бабушка вскакивает и начинает ходить туда-сюда по комнате. Она бормочет себе под нос: «Мне надо домой! Мне надо домой!» Модуль 5 У р о к 4 . Д е п р е сс и я , тр е в о ж н о ст ь и а п ат и я iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м 215 3. Проверьте себя Реагирование на ситуацию, когда человек с деменцией теряет интерес к повседневной деятельности Как, по-вашему, следует реагировать Софии на эту ситуацию? Выберите все ответы, которые вы считаете подходящими  София подходит к Петру и говорит: «Я устала от того, что ты ничего не делаешь, вставай и пойдем!».  София подходит к Петру и гладит его по голове. Она говорит, что любит его и хотела бы, чтобы они занялись чем-нибудь вместе. Петр поворачивается к ней и слабо улыбается.  София говорит: «Ты теперь никогда ничего не делаешь из того, что я прошу. С тобой стало невозможно вместе жить. Я просто не представляю, что делать».  София говорит: «Пойдем немного прогуляемся вместе. Я знаю, что тебе хотелось бы выйти из дома и погулять».  София уходит и больше не пытается привлечь Петра к каким-либо делам.  София вспоминает, чем Петр раньше действительно любил заниматься, и думает, что она могла бы помочь, например, почитав ему газету, приготовив его любимое блюдо или вместе сходить в магазин, где раньше работал Петр 2. Как реагировать на ситуацию, когда человек с деменцией теряет интерес к повседневной деятельности? Рассмотрим пример У Петра был небольшой магазин и он был очень активным членом местного общества. Теперь у Петра деменция, и он живет со своей женой Софией. Недавно Петр сидел у окна и бесцельно смотрел на улицу. Когда у человека пропадает интерес к каким-то занятиям, это можно назвать апатией. София очень обеспокоилась, поскольку такое поведение раньше было не свойственно Петру. Казалось, что он отстраняется и отдаляется от неё. Она сказала: «Петя, пойдем прогуляемся?» Он не ответил. Модуль 5 У р о к 4 . Д е п р е сс и я , тр е в о ж н о ст ь и а п ат и я iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м 216 Рассмотрим вашу ситуацию Важно применить то, что вы узнали, в вашей конкретной ситуации. Используйте место ниже для заполнения информации, аналогично записям в дневнике. Что вы можете сделать, чтобы предотвратить это? Как иначе вы могли бы реагировать? 1. Упражнение Проявляются ли у вашего человека с деменцией изменения в настроении, отсутствие интереса или какие-то признаки депрессии или тревожности? Если да, то что представляют собой эти изменения? Модуль 5 У р о к 4 . Д е п р е сс и я , тр е в о ж н о ст ь и а п ат и я iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м 217 Отлично, вы закончили данный урок! Краткий обзор того, что вы узнали  Признаки депрессии и тревожности – это обычное явление при деменции.  Изменения в настроении могут очень расстраивать и человека с деменцией, и лицо, осуществляющее уход.  Если у человека есть проблемы с настроением, то ему нужна дополнительная поддержка и любовь.  Важно выявить способы, которые помогут остановить или сократить изменения в настроении, успокоив человека и заинтересовав его какими-нибудь делами, которые ему нравилось делать раньше.  Если какой-то подход не срабатывает, пробуйте другой.  Если вы сталкиваетесь со сменами настроения, помните, что это может быть одним из проявлений деменции.  Сделайте глубокий вдох и подумайте о том, какая реакция будет самой щадящей для вас и для человека, за которым вы ухаживаете, в ситуации, когда у него имеются проблемы с настроением или потерей интереса. Модуль 5 У р о к 4 . Д е п р е сс и я , тр е в о ж н о ст ь и а п ат и я iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м 218 207 Модуль 5 ОТВЕТЫ - Как справляться с изменениями в поведении Урок 4. Депрессия, тревожность и апатия 1. Проверьте себя Реагирование на ситуацию, когда человек с деменцией чувствует себя подавленным Ниже несколько вариантов, что могла бы сделать или сказать Ульяна Выберите все варианты реагирования, которые, по вашему мнению, могли бы сработать Подойти к Егору и спокойным, ободряющим тоном сказать: «У меня есть несколько идей, как помочь тебе чувствовать себя лучше. Давай поговорим». Это удачный ответ, поскольку Егору нужно больше поддержки из-за изменений в его настроении. Сказать: «Егор, что случилось? Мне надоело видеть тебя в таком состоянии. Поднимайся и займись чем-нибудь». Реагировать таким образом бесполезно, потому что Егор никак не может повлиять на то, что ему грустно. Сказать: «Мужчины не плачут и не грустят так! Мы с тобой раньше так хорошо проводили время!» Такой ответ не очень хорош, поскольку Егор может смутиться и ему станет еще более грустно. Подойти и дотронуться до руки или плеча Егора: «Я знаю, что ты плохо себя чувствуешь. Я тоже. Мы сейчас вместе проходим непростое испытание». Это удачный ответ, поскольку когда людям грустно, они нуждаются в дополнительной поддержке, любви и понимании. Сесть рядом с Егором и предложить заняться чем-то приятным вместе. Это удачный ответ, поскольку это может отвлечь Егора, и он будет чувствовать себя лучше. Вздохнуть и уйти, подумав, что она ничем здесь не поможет. Это бесполезно, поскольку таким образом Ульяна отдалит от себя Егора еще больше. 219 О Т В Е Т Ы – К ак с п р ав л я ть ся с и зм е н е н и я м и в п о в е д е н и и . У р о к 4 iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м 175 Модуль 5 Реагирование на ситуацию, когда человек с деменцией испытывает беспокойство Ниже несколько вариантов, что Алла могла бы сделать или сказать Семёну Выберите все варианты правильного реагирования Подумать: «Бабушка так ведет себя из-за деменции». Это удачный ответ, поскольку в данном случае учитывается, что реакция Аллы может быть вызвана деменцией. Сказать: «Бабушка! Сядь, ты не даешь мне смотреть телевизор». Такой ответ не очень хорош, поскольку после такого резкого ответа Алла может разволноваться еще больше. Улыбнуться бабушке и заверить ее, что она в безопасности и находится дома. Это удачный ответ, поскольку когда люди испытывают беспокойство, они нуждаются в дополнительной поддержке, любви и понимании. Попросить бабушку помочь ему в каком-то деле. Это может быть хорошим вариантом, поскольку это может отвлечь Аллу и изменить ее реакцию. Прибавить звук, чтобы не слышать то, что говорит бабушка не обращать на не внимания. Это неудачный ответ. Это только увеличит тревожность бабушки. Найти наушники для телевизора и попросить бабушку вернуться к вязанию, чтобы чем-то занять ее. Это удачный ответ. Семён сможет продолжить смотреть телевизор в наушниках, то есть громкий звук не будет мешать Алле, а Алла получит возможность снова заняться вязанием. 220 О Т В Е Т Ы – К ак с п р ав л я ть ся с и зм е н е н и я м и в п о в е д е н и и . У р о к 4 iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м 2. Проверьте себя 175 Модуль 5 Реагирование на ситуацию, когда человек с деменцией теряет интерес к повседневной деятельности Как, по-вашему, следует реагировать Софии? Выберите все варианты правильного реагирования София подходит к Петру и говорит: «Я устала о того, что ты ничего не делаешь, вставай и пойдем!». Такой ответ не очень хорош, поскольку после такого прямолинейного приказа Петр может отстраниться еще больше. София подходит к Петру и гладит его по голове. Она говорит, что любит его и хотела бы, чтобы они занялись чем-нибудь вместе. Петр поворачивается к ней и слабо улыбается. Это удачный ответ, поскольку в данном случае учитывается, что проблема связана с деменцией. Она не принимает его апатию на свой счет, а просто выражает свою любовь и поддержку. София говорит: «Ты теперь никогда ничего не делаешь из того, что я прошу. С тобой стало невозможно вместе жить. Я просто не представляю, что делать». Это неудачный ответ, поскольку в данном случае она просто отказывается помочь решить проблему Петра. Он может отдалиться от нее еще больше. София говорит: «Пойдем немного прогуляемся вместе. Я знаю, что тебе хотелось бы выйти из дома и погулять». Это удачный ответ, поскольку так можно подбодрить и успокоить Петра. София уходит и не пытается больше привлечь Петра к каким-либо делам. Такой ответ нельзя назвать хорошим, поскольку это может только ухудшить ситуацию. София вспоминает, чем Петр раньше действительно любил заниматься, и думает, что она могла бы помочь, например, почитав ему газету, приготовив его любимое блюдо или вместе с ним посетив магазин, где раньше работал Петр. Это удачный ответ, поскольку таким образом София заботится о Петре и хочет помочь ему снова заняться тем, что ему всегда нравилось. 221 О Т В Е Т Ы – К ак с п р ав л я ть ся с и зм е н е н и я м и в п о в е д е н и и . У р о к 4 iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м 3. Проверьте себя  1. Как справляться с проблемами сна у человека с деменцией? Трудности со сном могут представлять собой проблему для людей с деменцией и их семей. Люди с деменцией могут испытывать трудности с засыпанием, просыпаться среди ночи или слишком рано просыпаться по утрам. Как следствие, сон лица, осуществляющего уход, также может прерываться. В данном уроке вы сможете узнать, как помочь обеспечить хороший сон человеку с деменцией Модуль 5 У р о к 5 . Т р у д н о ст и с о с н о м iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м Урок 5. Трудности со сном Почему этот урок важен? Люди с деменцией могут испытывать трудности со сном, что может также негативно влиять и на сон человека, осуществляющего за ними уход. Каким образом этот урок поможет мне? В данном уроке представлены примеры и практические советы по обеспечению хорошего сна. Что я смогу узнать? 1. Как справляться с проблемами сна у человека с деменцией? 2. Как справляться с ситуацией, когда человек с деменцией просыпается среди ночи? 222 1. Упражнение Какие основные проблемы со сном у человека, за которым Вы ухаживаете? Выберите все, что применимо  У него трудности с засыпанием  Просыпается посреди ночи  И то, и другое  Другое (укажите, пожалуйста):  Нет проблем в данном аспекте Модуль 5 У р о к 5 . Т р у д н о ст и с о с н о м iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м 223 Можете ли вы разбить цикл изменения поведения в данном примере на три соответствующие части? Как проявляется нежелательное поведение? Что это значит для Элины? 1. Проверьте себя Понимание трудностей со сном Трудности с засыпанием Раиса – пожилая женщина с деменцией. Она живет вместе со своей семьей и спит недалеко от своей внучки Элины. Обычно семья ужинает около 6 часов вечера. Часто после этого они занимаются чем-то все вместе. Раису зачастую не очень привлекают эти занятия, поэтому семья часто отправляет ее ложиться спать уже в 8 вечера. Но Раисе сложно заснуть, поэтому весь вечер Раиса шумно открывает и закрывает шкафчики своего комода. Когда Элина ложится спать, ей никак не удается заснуть из-за шума, который устраивает Раиса. Что происходит перед таким поведением? Модуль 5 У р о к 5 . Т р у д н о ст и с о с н о м iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м 224 Все это самые простые шаги, с помощью которых можно помочь человеку с деменцией заснуть. Но что делать, если проблема более сложная? 2. Проверьте себя Реагирование на трудности со сном Ниже несколько примеров того, что могла бы сделать Элина Выберите все варианты, следование которым, по вашему мнению, может помочь Раисе заснуть  Сходить с Раисой на прогулку и добавить больше физической активности в течение дня  Дать бабушке снотворное  Постараться проследить за тем, чтобы Раиса не пила кофе или слишком много жидкости за несколько часов до сна  Сделать обед основным приемом пищи в течение дня  Ограничить короткие промежутки дневного сна 15-30 минутами  Включать успокаивающую музыку перед сном, чтобы помочь Раисе заснуть  Организовать определенный порядок действий перед сном, например, выключить свет, умыть лицо, почистить зубы и переодеться в пижаму  Принять во внимание, что некоторым людям требуется меньше времени, чтобы выспаться. Очевидно, необходимые 6-8 часов сна при отходе ко сну в 20:00 означают, что человек проснется между 2 и 4 часами утра Модуль 5 У р о к 5 . Т р у д н о ст и с о с н о м iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м 225 2. Как справляться с ситуацией, когда человек с деменцией просыпается среди ночи? Рассмотрим другой пример В 3 часа ночи Мила просыпается и начинает ходить по дому. Ее невестка Ирина все еще спит. Мила какое-то время бродит по дому, а потом идет и будит Ирину. Мила начинает задавать Ирине вопросы: «Где мы находимся? Я хочу домой». Ирина недовольна тем, что ее разбудили, поскольку завтра у нее насыщенный рабочий день. Ирина старается успокоить Милу: «Мама, тебе надо пойти и снова лечь спать, сейчас только 3 часа утра». Мила отвечает: «Я не хочу спать». Ирина восклицает: «Я больше не могу это терпеть!» 3. Проверьте себя Как справляться с тем, что человек не спит посреди ночи (1) Что может сделать Ирина, чтобы предотвратить блуждание Милы в 3 часа ночи? Выберите все ответы, которые вы считаете подходящими.  Постараться понять, что поможет Миле спать лучше. Некоторые люди предпочитают, чтобы в комнате было темно, а телевизор был выключен, либо звук был на минимуме, в то время как другие люди предпочитают включенный ночник, мягкую музыку или работающий телевизор  Дать Миле какой-то любимый предмет, чтобы она могла расслабиться и быстрее уснуть (например, одеяло или мягкую игрушку)  Записать Милу к врачу, чтобы выяснить, нет ли какой-то причины медицинского характера, которая мешает ей спать (причины могут быть разные, например, инфекция мочевыводящих путей, боль, галлюцинации вследствие приема лекарств)  Разработать распорядок дня, согласно которому Мила в течение дня будет занята различными делами и не будет спать днем  Поощрять физические упражнения в течение дня (например, прогулка, зарядка)  Сказать Миле, что вы перестанете заботиться о ней, если она продолжит будить Ирину каждую ночь  Спросить Милу, не хочет ли она в туалет, перекусить или попить. Если она ответит «да», то помочь ей реализовать эту потребность  Заставить Милу снова улечься в постель  Попросить помощи у члена семьи, друга или профессиональной сиделки Модуль 5 У р о к 5 . Т р у д н о ст и с о с н о м iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м 226 На примере предыдущего упражнения вы узнали несколько способов, как справиться с бесцельным хождением посреди ночи. Давайте теперь рассмотрим вашу конкретную ситуацию и некоторые дополнительные варианты реагирования. 4. Проверьте себя Как справляться с тем, что человек не спит посреди ночи (2) Какие из приведенных ниже вариантов реагирования выбрали бы вы, если бы человек, за которым вы ухаживаете, испытывал проблемы со сном? Выберите все ответы, которые вы считаете подходящими  Напомнить самому себе, что надо сохранять спокойствие и сосредоточиться на том, чтобы организовать нормальный сон человека с деменцией. Таким образом вы направите свою энергию на решение проблемы со сном, а не будете сфокусированы на своих эмоциях  Мягко напомнить человеку, что на улице темно и сейчас время спать. При необходимости постараться помочь человеку расслабиться, например, включив спокойную музыку  Почитать вслух человеку, за которым вы ухаживаете. Выбрать что- либо, что, как вы знаете, подействует успокаивающе, например, стихи или рассказ. Спеть человеку песенку или напеть ее с ним вместе. Или заняться чем-то еще  Успокоить человека с деменцией. Дать ему плюшевую игрушку и побыть с человеком, пока он не уснет Совет Проблемы со сном могут быть связаны с депрессией. Если человек, за которым вы ухаживаете, испытывает трудности со сном, то вам, возможно, будет полезно прочитать Урок 4 «Депрессия, тревожность или апатия». Также посоветуйтесь с доктором. Модуль 5 У р о к 5 . Т р у д н о ст и с о с н о м iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м 227 Рассмотрим вашу конкретную ситуацию Ранее при выполнении упражнения на стр. 211, вы идентифицировали основную проблему со сном для человека, за которым вы ухаживаете. Важно применить то, что вы усвоили, в вашей конкретной ситуации. Используйте место ниже для заполнения информации, аналогично записям в ежедневнике. Как вы могли бы улучшить свое реагирование на проблемы со сном? 2. Упражнение Что вы могли бы сделать, чтобы помочь решить проблемы со сном? Модуль 5 У р о к 5 . Т р у д н о ст и с о с н о м iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м 228 Отлично, вы закончили данный урок! Модуль 5 У р о к 5 . Т р уд н о ст и с о с н о м iS u p p o rt Р у к о в о д с тв о п о м е р о п р и я ти я м Краткий обзор того, что вы узнали  Трудности со сном - довольно распространенная проблема у людей с деменцией.  Решение проблемы со сном может оказаться очень сложным вопросом.  Если человек, за которым вы ухаживаете, испытывает трудности со сном, постарайтесь создать ему максимально комфортную обстановку.  Постарайтесь выявить обстоятельства, которые могут мешать человеку спать, и устранить эти причины.  Если какой-то подход не срабатывает, пробуйте другой.  Помните, что какие-то дни будут проходить лучше, а какие-то – хуже.  Напоминайте сами себе, что трудности со сном – это одно из проявлений болезни.  Сделайте глубокий вдох и подумайте о том, какой ответ будет самым щадящим для вас и для человека, за которым вы ухаживаете, в ситуации проблем со сном.  Обратитесь за помощью. Если вы сами не досыпаете, то вам будет сложно обеспечивать должный уход. 229 175 Модуль 5 ОТВЕТЫ - Как справляться с изменениями в поведении Урок 5. Трудности со сном 1. Проверьте себя Понимание трудностей со сном Можете ли вы разбить цикл изменения поведения в данном примере на три соответствующие части? Что происходит перед таким поведением? Как проявляется нежелательное поведение? Что это значит для Элины? Раису отправляют спать рано, в 20:00, чтобы семья могла вместе заняться какими-то делами, которые Раису не привлекают. У Раисы трудности с засыпанием, и весь вечер она шумно открывает и закрывает шкафчики своего комода. Элина не может заснуть 230 О Т В Е Т Ы – К ак с п р ав л я ть ся с и зм е н е н и я м и в п о в е д е н и и . У р о к 5 iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м 175 2. Проверьте себя Реагирование на трудности со сном У Раисы трудности с засыпанием Сходить с Раисой на прогулку и добавить больше физической активности в течение дня. Хорошая идея! Физические упражнения в течение дня могут помочь хорошо спать ночью. Дать бабушке снотворное. Это не очень хорошая идея. Это может привести человека с деменцией в еще большее замешательство или возбуждение, кроме того, снотворное может вызвать привыкание. Постараться проследить за тем, чтобы Раиса не пила кофе или слишком много жидкости за несколько часов до сна. Это удачный ответ. Кофе, чай или слишком большое количество жидкости могут не дать людям спокойно спать, провоцируя частую потребность использования туалета. Сделать обед основным приемом пищи в течение дня. Это может помочь. Легкий ужин может помочь решить проблему со сном. Ограничить короткие промежутки дневного сна 15-30 минутами. Это может оказаться хорошей идеей. Здесь учитывается потребность Раисы поспать в течение дня, но это не помешает ей спокойно уснуть позже. Включать успокаивающую музыку перед сном, чтобы помочь Раисе заснуть. Хорошая идея. Придумать для Раисы какие-то успокаивающие занятия перед отходом ко сну, например, прослушивание музыки или чтение. Слишком много занятий перед сном могут привести к перевозбуждению и помешают человеку уснуть. Организовать определенный порядок действий перед сном, например, выключить свет, умыть лицо, почистить зубы, переодеться е в пижаму. Это удачный ответ, поскольку привычные занятия помогут расслабиться человеку с деменцией. Принять во внимание, что некоторым людям требуется меньше времени, чтобы выспаться. Очевидно, необходимые 6-8 часов сна при отходе ко сну в 20:00 означают, что человек проснется между 2 и 4 часами утра. Это удачный ответ. Выберите наиболее приемлемый интервал для сна, исходя из имеющихся возможностей. Модуль 5 231 О Т В Е Т Ы – К ак с п р ав л я ть ся с и зм е н е н и я м и в п о в е д е н и и . У р о к 5 iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м 175 3. Проверьте себя Как справиться с тем, что человек не спит посреди ночи (1). Что может сделать Ирина, чтобы предотвратить блуждание Милы в 3 часа ночи? Постараться понять, что поможет Миле спать лучше. Некоторые люди предпочитают, чтобы в комнате было темно, а телевизор был выключен, либо звук был на минимуме, в то время как другие люди предпочитают включенный ночник, мягкую музыку или работающий телевизор. Это хороший ответ. Все люди разные и, возможно, вам придется попробовать несколько вариантов решения, прежде чем вы подберете тот, который сработает. Дать Миле какой-то любимый предмет, чтобы она могла расслабиться и быстрее уснуть (например, одеяло или мягкую игрушку). Это хороший ответ. Это может помочь Миле расслабиться и почувствовать себя в безопасности. Записаться ко врачу, чтобы выяснить, нет ли какой-то причины медицинского характера, которая мешает спать (причины могут быть разные, например, инфекция мочевыводящих путей, боль, галлюцинации вследствие приема лекарств). Хотя совсем не обязательно обращаться к врачу всякий раз, когда человек с деменцией не может уснуть, обратитесь за советом, если это беспокоит и огорчает вас или человека, живущего с деменцией. Разработать распорядок дня, согласно которому Мила в течение дня будет занята различными делами и не будет спать. Хорошая идея. Это может улучшить ночной сон. Модуль 5 232 О Т В Е Т Ы – К ак с п р ав л я ть ся с и зм е н е н и я м и в п о в е д е н и и . У р о к 5 iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м 175 3. Проверьте себя (продолжение) Как справиться с тем, что человек не спит посреди ночи (1). Что может сделать Ирина, чтобы предотвратить блуждание Милы в 3 часа ночи? Поощрять физические упражнения в течение дня (например, прогулка, зарядка). Это может помочь улучшить ночной сон. Сказать Миле, что вы перестанете заботиться о ней, если она продолжит будить Ирину каждую ночь. Это неудачный ответ. Помните, что деменция – это заболевание, и человек с деменцией зависим от других людей и нуждается в уходе. Спросить Милу, не хочет ли она в туалет, перекусить или попить. Если она ответит «да», то помочь ей реализовать эту потребность. Это может помочь. Такой перерыв может помочь человеку снова лечь спать. Заставить Милу снова улечься в постель. Никогда так не делайте. Хотя справляться с нарушениями сна бывает очень трудно, относитесь с уважением к человеку с деменцией. Более того, так человек может разволноваться и разозлиться. Это совершенно точно не решит проблемы со сном. Попросить помощи у члена семьи, друга или профессиональной сиделки. Это может помочь решить проблему. В конце концов, недосыпание может также повлиять на возможность семьи обеспечивать уход за человеком с деменцией. Кто- то другой может помочь, дав отдохнуть члену семьи ночью или устроив ему выходной. Модуль 5 233 О Т В Е Т Ы – К ак с п р ав л я ть ся с и зм е н е н и я м и в п о в е д е н и и . У р о к 5 iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м 175 4. Проверьте себя Как справиться с тем, что человек не спит посреди ночи (2). Какие из приведенных ниже вариантов реагирования выбрали бы вы, если бы человек, за которым вы ухаживаете, испытывал проблемы со сном Напомнить самому себе, что надо сохранять спокойствие и сосредоточиться на том, чтобы организовать нормальный сон человека с деменцией. Таким образом вы направите свою энергию на решении проблемы со сном, а не будете сфокусированы на своих эмоциях. Верно! Мягко напомнить человеку, что на улице темно и сейчас время спать. При необходимости постараться помочь человеку расслабиться, например, включив спокойную музыку. Отличная идея! Почитать вслух человеку, за которым вы ухаживаете. Выбрать что-либо, что, как вы знаете, подействует успокаивающе, например, стихи или рассказ. Спеть человеку песенку или напеть ее с ним вместе. Или заняться чем-то еще. Отличный ответ! Успокоить человека с деменцией. Дать ему плюшевую игрушку и побыть с человеком, пока он не уснет. Отличная идея! Модуль 5 234 О Т В Е Т Ы – К ак с п р ав л я ть ся с и зм е н е н и я м и в п о в е д е н и и . У р о к 5 iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м 1. Почему у людей с деменцией бывают навязчивые мысли? Почему они видят и слышат то, чего в реальности не существует? Люди с деменцией могут неадекватно воспринимать окружающий мир вследствие изменений в их головном мозге. Такое искажение восприятия называется бредом (навязчивые мысли) и галлюцинациями (ситуации, когда человек видит или слышит несуществующие вещи). Бред – это навязчивое ложное суждение. Например, человек может придерживаться ложного суждения от том, что ему угрожает опасность или вред со стороны лица, осуществляющего уход. Человеку с деменцией ошибочное суждение кажется очень реальным, вызывает страх и может привести к тревожному поведению в стиле самозащиты. При галлюцинациях человек может видеть или слышать вещи, которых в реальности не существует, например, беседующих людей в комнате, где он находится. Люди с деменцией, которым свойственны такие проявления, очень сильно нуждаются в понимании и поддержке со стороны лица, осуществляющего уход. Модуль 5 У р о к 6 . Б р е д и г ал л ю ц и н ац и и iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м Урок 6. Бред и галлюцинации Почему этот урок важен? Навязчивые мысли и несуществующие образы (бред и галлюцинации) могут доставлять дискомфорт человеку с деменцией, а также лицу, осуществляющему уход. Каким образом этот урок поможет мне? Данный урок поможет вам идентифицировать способы, которые помогут прекратить или сократить случаи появления бреда и галлюцинаций, а также изменить свое отношение к таким ситуациям. Что я смогу узнать? 1. Почему у людей с деменцией бывают навязчивые мысли? Почему они видят и слышат то, чего в реальности не существует? 2. Как прекратить или сократить случаи появления бреда и галлюцинаций? 235 Были ли у вашего подопечного навязчивые мысли или ситуации, когда он видел или слышал то, чего не существует? 1. Упражнение Навязчивые мысли или ситуации, когда человек видит/слышит то, чего не существует свойственны для некоторых людей с деменцией. В данном уроке вы сможете узнать, как справляться с ними. Вы можете описать ситуацию, используя строки ниже аналогично записям в ежедневнике Запомните Модуль 5 У р о к 6 . Б р е д и г ал л ю ц и н ац и и iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м 236 2. Как прекратить или сократить случаи появления бреда и галлюцинаций? Рассмотрим пример У жены Вадима Татьяны деменция. Однажды Вадим и Татьяна пошли на прогулку. Вдали они увидели женщину. Татьяна неожиданно начала кричать: «Наташа, Наташа, я здесь!» Затем она побежала по направлению к женщине. Это была молодая женщина лет 20. Татьяна по ошибке приняла ее за свою сестру, которая погибла в автомобильной аварии более 30 лет назад. Молодая женщина проигнорировала Татьяну, что очень расстроило ее. 1. Проверьте себя Человек ошибочно принимает одного человека за другого Что бы вы посоветовали Вадиму? Выберите все правильные ответы  Успокоить Татьяну тихим голосом  Увести ее от женщины в парке  Прямо и резко сказать ей правду, чтобы сразу прояснить ситуацию  Поспорить с Татьяной, что молодая женщина – это не ее сестра  Сказать, что молодая женщина в парке просто очень похожа на сестру, но не является ей  Привлечь каким-то образом молодую женщину из парка к разрешению ситуации  Постараться объяснить Татьяне то, что реально происходит  Сказать: «Ты права, это – Наташа»  Сказать: «Когда мы вернемся домой, ты сможешь посмотреть на фото Наташи и вспомнить ее» Модуль 5 У р о к 6 . Б р е д и г ал л ю ц и н ац и и iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м 237 Рассмотрим другой пример У отца Миланы, которого зовут Ларион, деменция. В один день Ларион начал вести себя очень беспокойно. Внезапно, он очень сильно испугался чего-то, взглянув в угол комнаты. Он позвал свою дочь и спросил: «Ты видишь, как они там разговаривают?». После этого Ларион продолжил разговор с кем-то и закричал: «Эй, что вы там делаете?». На Милану это произвело жуткое впечатление, она была готова ринуться прочь. Она подумала про себя: «Состояние отца еще хуже, чем я думала». 2. Проверьте себя Человек видит людей, которых в реальности нет Что бы вы посоветовали Милане? Выберите все правильные ответы  Успокоить отца, приговаривая тихим голосом: «Ты в безопасности, я с тобой»  Успокоить отца, взяв его за руку и похлопывая по ней  Проверить, нет ли чего-то такого в интерьере, что может провоцировать галлюцинации Лариона, например, игры теней при освещении солнечным светом. При необходимости внести изменения  Увести его из комнаты  Просто сказать, что это неправда, что в комнате нет других людей Совет Уточните у доктора, возможно ли, что в данном случае проявились какие-то побочные эффекты лекарств, принимаемых человеком с деменцией. Такие эффекты могут усугублять проблему. Модуль 5 У р о к 6 . Б р е д и г ал л ю ц и н ац и и iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м 238 Рассмотрим вашу конкретную ситуацию Важно применить, что вы усвоили, в вашей конкретной ситуации. Навязчивые или странные мысли не сопровождают человека непрерывно. Что бы вы сделали, если бы столкнулись с такими ситуациями у человека, за которым вы ухаживаете? Постарайтесь описать разные варианты реакции ниже, используя строки ниже, аналогично записям в ежедневнике. Что из этого вы попробовали бы в первую очередь? 2. Упражнение Запомните Иногда у людей с деменцией бывают галлюцинации, которые не вызывают негативных эмоций. Если такие видения не причиняют человеку страданий, попробуйте не тревожить его, оставайтесь рядом, пока подобное состояние не пройдет. Модуль 5 У р о к 6 . Б р е д и г ал л ю ц и н ац и и iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м 239 Отлично, вы закончили данный урок! Краткий обзор того, что вы узнали  Навязчивые мысли или ситуации, когда человек видит/слышит то, чего не существует (бред и галлюцинации) – эти проблемы свойственны для людей с деменцией.  Такие явления могут беспокоить и человека с деменцией, и лицо, осуществляющее уход.  Люди с такими видениями и навязчивыми мыслями нуждаются в поддержке.  Важно найти способы снизить остроту таких состояний, не вступая в спор с человеком, за которым вы ухаживаете, а просто успокаивая и переключая его внимание.  Проверьте, нет ли в окружающей обстановке чего-либо, что провоцировало бы бред или галлюцинации.  Если какой-то подход не срабатывает, пробуйте другой.  Напомните сами себе, что навязчивые мысли и видения – это одно из проявлений болезни.  Сделайте глубокий вдох и подумайте о том, какой ответ будет самым щадящим для вас и для человека с навязчивыми мыслями и видениями. Модуль 5 У р о к 6 . Б р е д и г ал л ю ц и н ац и и iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м 240 175 Модуль 5 ОТВЕТЫ — Как справляться с изменениями в поведении Урок 6. Бред и галлюцинации 1. Проверьте себя Человек ошибочно принимает одного человека за другого Успокоить Татьяну тихим голосом. Это удачный ответ, поскольку люди, у которых наблюдаются бред и галлюцинации, могут испытывать страх и чувствовать, что они в опасности. Увести ее от женщины в парке. Это удачный ответ, поскольку это отвлечет ее от молодой женщины в парке. Прямо и резко сказать ей правду, чтобы сразу прояснить ситуацию. Это неудачный ответ, поскольку таким образом Татьяна может расстроиться еще больше. Поспорить с Татьяной, что молодая женщина – это не ее сестра. Это неудачный ответ, поскольку таким образом Татьяна может расстроиться еще больше. Сказать, что молодая женщина в парке просто очень похожа на сестру, но не является ей. Это удачный ответ, поскольку таким образом поддерживается позитивная социальная среда. ✕ Привлечь каким-то образом молодую женщину из парка к разрешению ситуации. Это бесполезно, поскольку может только осложнить ситуацию. Постараться объяснить Татьяне то, что реально происходит. Это неудачный ответ, поскольку Татьяна вряд ли сможет понять Сказать: «Ты права, это – Наташа». Это неправильно, поскольку это неправда. Сказать: «Когда мы вернемся домой, ты сможешь посмотреть на фото Наташи и вспомнить ее». Это удачный ответ, поскольку таким образом Вадим учитывает важность этого вопроса для своей жены, не оспаривая то, что молодая женщина, которую они встретили в парке, не ее сестра. 241  О Т В Е Т Ы – К ак с п р ав л я ть ся с и зм е н е н и я м и в п о в е д е н и и . У р о к 6 iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м 175 ОТВЕТЫ - Как справляться с изменениями в поведении Урок 6. Бред и галлюцинации 2. Проверьте себя Человек видит людей, которых в реальности нет Успокоить отца, приговаривая тихим голосом: «Ты в безопасности, я с тобой». Это удачный ответ, поскольку люди, у которых наблюдается бред и галлюцинации, могут испытывать страх и чувствовать, что они в опасности. Проверить, нет ли чего-то такого в интерьере, что может провоцировать галлюцинации Лариона, например, игры теней при освещении солнечным светом. При необходимости изменить обстановку. Это удачный ответ, поскольку мозг человека может, конечно, неверно интерпретировать реальность, но остается также вероятность того, что имеется какая-то физическая причина в окружающей среде, приводящая к такой путанице. Увести его из комнаты. Это удачный ответ, поскольку, меняя окружающую среду, она может отвлечь отца, и галлюцинация прекратится. Просто сказать, что это неправда, что в комнате нет других людей. Это неудачный ответ, поскольку спор о том, что он видит или слышит, не поможет успокоиться человеку, подверженному бреду и галлюцинациям. Модуль 5 242 О Т В Е Т Ы – К ак с п р ав л я ть ся с и зм е н е н и я м и в п о в е д е н и и . У р о к 6 iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м 1. Что такое повторяющееся поведение? Человек с деменцией может забывать, что он говорил, слышал или делал в предыдущий момент, что приводит к повторению вопросов или действий. Обычно непрерывное повторение чего-либо снова и снова не опасно для человека с деменцией, если лицо, осуществляющее уход, знает, как с этим справиться. В противном случае человек с деменцией может становиться тревожным, агрессивным или подавленным, что, в свою очередь, вызовет стресс у человека, осуществляющего уход. В результате он может отреагировать неудачно, например, закричит, тем самым вызывая чувство вины у человека с деменцией. Модуль 5 У р о к 7 . П о в то р я ю щ е е ся п о в е д е н и е iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м Почему этот урок важен? Если человек, живущий с деменцией, повторяет одно и то же снова и снова, это может быть очень утомительно как для него самого, так и для лица, осуществляющего уход. Мы будем называть это «повторяющееся поведение». Каким образом этот урок поможет мне? Данный урок поможет вам понять, почему происходит повторяющееся поведение, а также как реагировать на него и как сокращать такие проявления. Что я смогу узнать? 1. Что такое повторяющееся поведение? 2. Как успокоить человека с деменцией, если у него случается повторяющееся поведение? Урок 7. Повторяющееся поведение 243 Рассмотрим вашу конкретную ситуацию Повторяет ли когда-нибудь человек, за которым вы ухаживаете, действия или слова снова и снова? Какое именно повторяющееся поведение ему свойственно? Вы можете описать это ниже, используя строки ниже, аналогично записям в ежедневнике. 1. Упражнение Модуль 5 У р о к 7 . П о в то р я ю щ е е ся п о в е д е н и е iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м 244 2. Как успокоить человека с деменцией, если у него случается повторяющееся поведение? Рассмотрим пример Евгений в данный момент заботится о своем отце Николае, поскольку мать, которая обычно присматривает за ним, ушла из дома на несколько часов. Все вроде бы идет хорошо, но Евгений замечает, что отец немного напряжен из-за того, что матери нет дома. Евгений и Николай вместе обедают. Через некоторое время после обеда Николай спрашивает: «А когда обед?» и «Что у нас будет на обед?» Сначала Евгений не обращает на это внимания. Затем, через несколько минут, Николай опять спрашивает: «А когда обед?» и «Что у нас будет на обед?», а также: «Где твоя мама?» Николай повторяет эти вопросы снова и снова. Евгений сбит с толку, не понимает, почему Николай так делает, и начинает все больше беспокоиться о своем отце. Евгений продолжает отвечать на вопросы, но эта ситуация раздражает его и он повышает голос. Евгений отвечает громко и раздраженно: «Я уже ответил на эти вопросы, зачем ты снова спрашиваешь?» 1. Проверьте себя Повторяющееся поведение Что бы вы порекомендовали Евгению? Пожалуйста, выберите все правильные варианты ответов  Сказать: «Да что с тобой? Ты не можешь запомнить? Мы только что пообедали!»  Сохранять спокойствие и заверить отца, что его жена скоро вернется  Занять отца чем-нибудь  Написать ответы на его вопросы, например, где его жена, и когда она должна прийти  Уйти  Смириться с подобным поведением, если они не влияют на состояние человека с деменцией. Найти способы подстроиться  Предложить отцу легкий перекус или напиток Модуль 5 У р о к 7 . П о в то р я ю щ е е ся п о в е д е н и е iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м 245 Рассмотрим ваш конкретный пример Важно применить то, что вы усвоили, в вашей конкретной ситуации. Используйте место ниже для заполнения информации аналогично записям в дневнике. Что вы могли бы сделать, чтобы такого поведения было меньше? Как вы могли бы изменить свою реакцию на такое поведение? 2. Упражнение Модуль 5 У р о к 7 . П о в то р я ю щ е е ся п о в е д е н и е iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м 246 Отлично, вы закончили данный урок! Краткий обзор того, что вы узнали  Ситуации, когда человек делает или говорит что-то снова и снова (повторяющееся поведение) свойственны для людей с деменцией.  Справиться с проблемой повторения может быть непросто.  В ситуации повторяющегося поведения постарайтесь сосредоточиться на том, чтобы успокоить человека, за которым вы ухаживаете.  Постарайтесь определить, что происходит перед тем, как начинается повторяющееся поведение, и что может усугублять его. Затем постарайтесь повлиять на это. Постарайтесь проанализировать, как вы реагируете и как скорректировать отклик.  Помните, что моменты бывают разные: некоторые ситуации хуже, некоторые – лучше.  Напомните сами себе, что повторяющееся поведение – это одно из проявлений болезни.  Сделайте глубокий вдох и подумайте о том, какой ответ будет самым щадящим для вас и для человека, за которым вы ухаживаете, если он повторяет одни и те же слова или действия снова и снова. Модуль 5 У р о к 7 . П о в то р я ю щ е е ся п о в е д е н и е iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м 247 175 Модуль 5 ОТВЕТЫ — Как справляться с изменениями в поведении Урок 7. Повторяющееся поведение 1. Проверьте себя Повторяющиеся вопросы Сказать: «Да что с тобой? Ты не можешь запомнить? Мы только что пообедали!». Это неудачный ответ, поскольку Евгений обвиняет своего отца в том, что Николай изменить не в силах. Сохранять спокойствие и заверить отца, что его жена скоро вернется. Это удачный ответ, поскольку если Николай не будет чувствовать себя в безопасности, его поведение может усугубиться. Похоже, что он чувствует тревогу, когда жены нет дома. Если убедить Николая в том, что его жена скоро вернется, повторяющееся поведение может стать менее выраженным или вообще прекратиться. Занять отца чем-нибудь. Это хороший вариант, поскольку занятие может отвлечь отца, и у него будет возможность видеть, слышать или делать что-то другое. Написать ответы на его вопросы, например, где его жена и когда она должна прийти. Это может сработать хорошо. Вероятно, Николай успокоится и перестанет спрашивать одно и то же. Уйти. Реагировать таким образом не очень хорошо, поскольку это только еще больше огорчит отца. Смириться с подобным поведением, если они не влияют на состояние человека с деменцией. Найти способы подстроиться. Это может быть хорошим вариантом. Если это всего лишь повторяющиеся вопросы, то, возможно, просто оставаясь спокойным, можно смягчить проявления такого поведения Предложить отцу легкий перекус или напиток. Это может оказаться хорошим вариантом реагирования. Возможно, Николай не наелся или хочет пить. Если удовлетворить эти потребности и успокоить его, это может сработать. 248 О Т В Е Т Ы – К ак с п р ав л я ть ся с и зм е н е н и я м и в п о в е д е н и и . У р о к 7 iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м 1. Почему бесцельное хождение это серьезная проблема? Люди с деменцией могут иметь привычку ходить вокруг дома или уходить из дома и бродить по окрестностям, это также называется блужданием. Это довольно распространенная проблема. Однако они могут потеряться. Поэтому, когда люди с деменцией остаются на улице одни, главной задачей становится их безопасность. Важно предотвращать блуждание Из данного урока вы узнаете, почему у людей с деменцией может возникать желание побродить. Также вы узнаете, какие шаги вы можете предпринять, чтобы сделать такую ситуацию более безопасной. Важно найти способы помочь людям с деменцией не потеряться или не оказаться в опасной ситуации Урок 8. Прогулки и опасность потеряться Почему этот урок важен? Озабоченность тем, что человек пойдет гулять и потеряется, может вызывать тревогу. Лица, осуществляющие уход, могут беспокоиться о том, не заблудится ли подопечный. Каким образом этот урок поможет мне? Данный урок поможет вам понять причины бесцельного хождения и ответить на вопрос, что делать, чтобы снизить опасность того, что человек с деменцией потеряется. Что я смогу узнать? 1. Почему бесцельное хождение – это проблема? 2. Почему у человека с деменцией может возникать желание бесцельно бродить по окрестностям? 3. Как я могу справляться с такой привычкой и снизить вероятность того, что человек, уход за которым я осуществляю, потеряется? Модуль 5 У р о к 8 . П р о гу л к и и о п ас н о ст ь п о те р я ть ся iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м 249 Бродит ли бесцельно или уходит один время от времени человек, за которым вы ухаживаете? Ниже вы можете описать, что происходит, аналогично записям в ежедневнике. 1. Упражнение 2. Почему у человека с деменцией может возникать желание бесцельно бродить?  Желание получить физическую нагрузку.  Следование выработанной годами привычке регулярно осуществлять пешие прогулки.  Попытка избавиться от скуки, связанной с недостаточной активностью.  Расходование энергии, накопившейся в результате длительного сиденья в течение дня.  Облегчение дискомфорта от боли или скованности в суставах.  Реагирование на стресс и беспокойство.  Ощущение потерянности или неуверенности в своем окружении.  Ситуация, когда человек выходит на улицу и забывает, куда он направлялся.  Ситуация, когда человек ищет кого-либо или что-либо из своей прошлой или текущей жизни.  Следование какой-то цели, например, стремление пойти на работу.  Путаница относительно текущего времени. Модуль 5 У р о к 8 . П р о гу л к и и о п ас н о ст ь п о те р я ть ся iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м 250 3. Как я могу справляться с такой привычкой и снизить вероятность того, что человек, уход за которым я осуществляю, потеряется? Есть определенные приемы, которые могут помочь управлять ситуациями привычной для человека ходьбы и не дать ему потеряться. Например, попробуйте следующее:  Сделайте так, чтобы у человека всегда был с собой документ, идентифицирующий его личность.  Убедитесь, что ваш дом защищен, что человек в доме находится в безопасности и не может уйти без вашего ведома. Например, полезной может оказаться маскировка дверей и дверных ручек, а также использование звонка или занавески, которые издают шум, когда кто-то пользуется дверью.  Необходимо, чтобы у вас была свежая фотография на случай, если человек, за которым вы ухаживаете, потеряется, чтобы вы смогли обратиться за помощью к другим людям.  Если ваш подопечный все же потерялся, то, когда вы его найдете, говорите с ним спокойно, с принятием и любовью, старайтесь избегать обвинений и проявления гнева.  Поддерживайте распорядок дня и организуйте другие занятия для человека, за которым вы ухаживаете. Выясните наиболее вероятное время суток, когда он может пойти гулять, и предусмотрите соответствующий план действий, например, совместная прогулка в парке в это время.  Постарайтесь разубедить человека, за которым вы ухаживаете, если он чувствует себя потерянным, брошенным или дезориентированным и решил уйти, чтобы «попасть домой» или «пойти на работу». Например, скажите ему: «Сегодня мы останемся здесь. Мы здесь в безопасности, я буду с тобой. Мы можем пойти домой утром, после того, как хорошо выспимся здесь ночью». Постарайтесь не спорить с человеком, живущим с деменцией.  Убедитесь, что все основные потребности удовлетворены. Сходил ли человек в ванную комнату? Хочет ли он пить или есть?  Избегайте посещения оживленных мест, в которых человек может запутаться и которые могут привести к дезориентации, таких как торговые центры, рынки, продуктовые магазины или другие людные места. Модуль 5 У р о к 8 . П р о гу л к и и о п ас н о ст ь п о те р я ть ся iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м 251 Рассмотрим пример У Амина деменция, и его поддерживает жена Самира. Самира готовит ужин и слышит, что Амин направляется к двери. Она знает, что Амин любит ходить на прогулку после обеда, но сейчас время для этого неподходящее, поскольку она занимается готовкой. 1. Проверьте себя Ситуация, когда человек уходит из дома Что бы вы посоветовали Самире? Выберите все подходящие ответы  Крикнуть Амину из кухни: «Не уходи! Я не могу сейчас пойти с тобой»  Выключить плиту и пойти с Амином  Запретить Амину уходить и затащить его обратно в дом  Подойти к Амину, стоящему у двери, и спокойно сказать: «Давай сначала поужинаем, а гулять пойдем позже»  Запереть дверь, чтобы Амин не мог уйти  Дать Амину уйти и позвонить соседке, чтоб она присмотрела за ним  Попросить другого члена семьи присмотреть пока за Амином  Попросить Амина помочь с делами на кухне  Запланировать ежедневную более длинную прогулку во второй половине дня перед ужином Модуль 5 У р о к 8 . П р о гу л к и и о п ас н о ст ь п о те р я ть ся iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м 252 2. Упражнение Рассмотрим вашу конкретную ситуацию Важно применить то, что вы усвоили, в вашей конкретной ситуации. Используйте место ниже для заполнения информации аналогично записям в дневнике. Какие возможны причины, по которым у человека, за которым вы ухаживаете, может возникать желание погулять? Выберите все ответы, которые применимы 1.  Желание получить физическую нагрузку.  Следование выработанной годами привычки регулярно осуществлять пешие прогулки.  Избавление от скуки, связанной с недостаточной активностью  Расходование энергии, накопившейся в результате длительного сиденья в течение дня.  Облегчение боли и дискомфорта от боли или скованности в суставах.  Реагирование на стресс и беспокойство.  Ощущение потерянности или неуверенности в своем окружении.  Ситуация, когда человек выходит на улицу и забывает, куда он направлялся.  Ситуация, когда человек ищет кого-либо или что-либо из своей прошлой или текущей жизни.  Следование какой-то цели.  Стремление пойти на работу.  Путаница относительно текущего времени  Другое (укажите, пожалуйста): 2. В зависимости от причин, которые вы выбрали, как вы могли бы отреагировать в следующий раз, когда человек, за которым вы ухаживаете, захочет выйти из дома и пойти погулять? Что бы вы сделали, чтобы помочь человеку наслаждаться безопасной прогулкой? Выделите немного времени и обобщите моменты, которые вы усвоили, пройдя данный урок, это поможет вам двигаться дальше: Модуль 5 У р о к 8 . П р о гу л к и и о п ас н о ст ь п о те р я ть ся iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м 253 Отлично, вы закончили данный урок! Чтобы узнать больше о том, как спланировать день, доставляющий удовольствие, см. Урок 5. Приятный день в Модуле 4. Краткий обзор того, что вы узнали  Бесцельное хождение или уход из дома – это довольно распространенное явление.  Ходьба может быть полезна как физическое упражнение, она помогает избавиться от скуки и может быть привычным видом времяпрепровождения или элементом распорядка дня человека.  Бесцельное хождение или уход из дома в одиночку могут быть рискованным мероприятием с точки зрения безопасности.  Озабоченность тем, что человек пойдет гулять и потеряется, может очень тревожить и человека с деменцией и лицо, осуществляющее уход.  Важно идентифицировать возможные причины бесцельного хождения или ухода из дома.  Ваша реакция на желание человека пройтись или погулять должна быть разной, в зависимости от фактических причин.  Если какой-то подход не срабатывает, пробуйте другой.  Помните, что иногда ситуация складывается хуже, а иногда – лучше.  Сделайте глубокий вдох и подумайте о том, какой ответ будет самым щадящим для вас и для человека с деменцией. Модуль 5 У р о к 8 . П р о гу л к и и о п ас н о ст ь п о те р я ть ся iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м 254 175 ОТВЕТЫ — Как справляться с изменениями в поведении Урок 8. Прогулки и опасность потеряться 1. Проверьте себя Как справляться с тем, что человек уходит из дома Крикнуть Амину из кухни: «Не уходи! Я не могу сейчас пойти с тобой». Это неудачный ответ, поскольку если кричать Амину из кухни, он может прийти в замешательство и разволноваться. И это не обязательно остановит его, он все равно может уйти один на улицу. Выключить плиту и пойти с Амином. Это удачный ответ, если нет других альтернатив Запретить Амину уходить и затащить его обратно в дом. Это неудачный ответ, поскольку Амин может разволноваться и начать сопротивляться, в результате чего Амин или Самира могут пострадать физически. Подойти к Амину, стоящему у двери, и спокойно сказать: «Давай сначала поужинаем, а гулять пойдем позже». Это удачный ответ, поскольку Самира сохраняет спокойствие, не кричит и демонстрирует уважение к желаниям Амина, говоря ему, что они пойдут вместе после ужина. Запереть дверь, чтобы Амин не мог уйти. Это удачный ответ, если других вариантов не осталось, и Самира остается дома вместе с Амином. По соображениям пожарной безопасности, человек с деменцией и нуждающийся в наблюдении никогда не должен оставаться запертым в доме в отсутствии другого человека. Дать Амину уйти и позвонить соседке, чтоб она присмотрела за ним. Это хороший вариант, если Самира заранее договорилась с соседкой о том, что она будет присматривать за Амином в такой ситуации. Если Амин находится на самых ранних стадиях деменции, то, возможно, ему не опасно сходить куда-то недалеко самостоятельно, если он хорошо знаком с местом прогулки. Попросить другого члена семьи присмотреть пока за Амином. Это хороший вариант. Самира может закончить готовить ужин, а Амин может хорошо прогуляться перед ужином. Модуль 5 255 О Т В Е Т Ы – К ак с п р ав л я ть ся с и зм е н е н и я м и в п о в е д е н и и . У р о к 8 iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м 175 1. Проверьте себя (продолжение) Как справляться с тем, что человек уходит из дома Попросить Амина помочь с делами на кухне. Это удачный ответ, поскольку таким образом можно одновременно отвлечь Амина от прогулки в одиночку и занять его чем-то конструктивным. Запланировать ежедневную более длинную прогулку во второй половине дня, перед ужином. Это удачный ответ, поскольку заблаговременное планирование позволит Самире не отвлекаться от приготовления ужина, чтобы помочь Амину. Также это поможет Амину потратить какую-то часть энергии и прийти домой к ужину более расслабленным Модуль 5 256 О Т В Е Т Ы – К ак с п р ав л я ть ся с и зм е н е н и я м и в п о в е д е н и и . У р о к 8 iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м 1. Что значат изменения в способности здраво мыслить? Изменения в способности здраво мыслить могут проявляться в том, что человек говорит неправильные вещи в неподходящее время, ведет себя неподобающим образом, не понимает собственных ограничений. Обычно такое поведение не несет вреда, но оно может очень нервировать и смущать человека, живущего с деменцией, а также лицо, осуществляющее уход. Людям с деменцией часто хочется, чтобы им кто-то подсказывал, что нужно делать, или подбадривал. Урок 9. Изменения в способности здраво мыслить Почему этот урок важен? Изменения в способности здраво мыслить могут очень тревожить и человека с деменцией и лицо, осуществляющее уход. Каким образом этот урок поможет мне? Данный урок поможет вам понять причины изменения способности здраво мыслить и получить навыки, которые помогут справляться с этой проблемой. Что я смогу узнать? 1. Что такое изменения в способности здраво мыслить? 2. Каким образом вы можете справляться с изменениями в способности здраво мыслить? 3. Что делать в случае более серьезных изменений в способности здраво мыслить? Модуль 5 У р о к 9 . И зм е н е н и я в с п о с о б н о с ти з д р а в о м ы сл и ть iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м 257 Замечали ли вы когда-нибудь у человека, за которым вы ухаживаете, изменения в способности здраво мыслить? Если да, что именно вы замечали? Опишите это ниже, там специально оставлено место Как это повлияло на вас как на лицо, осуществляющее уход? 1. Упражнение Совет Изменения в способности здраво мыслить становятся серьезнее по мере прогрессирования деменции. В ходе этого урока вы сможете попрактиковаться в различных способах реагирования на изменения в способности здраво мыслить и узнаете, что может помочь вам справиться с этим. Модуль 5 У р о к 9 . И зм е н е н и я в с п о с о б н о с ти з д р а в о м ы сл и ть iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м 258 2. Каким образом вы можете справляться с изменениями в способности здраво мыслить? Рассмотрим пример Иван приехал в город навестить свою тетю Ульяну, у которой деменция. Они собираются поужинать в ресторане. Иван решает заказать такси, чтобы добраться до ресторана. Когда машина неожиданно останавливается возле Ульяны, это пугает ее. Ульяна, которая в обычной обстановке всегда ведет себя вежливо, начала ругаться на водителя такси. 1. Проверьте себя Как управлять изменениями в способности здраво мыслить Что бы вы посоветовали Ивану, чтобы помочь ему справиться с ситуацией? Выберите все варианты правильного реагирования  Прикрыть рот Ульяны рукой, чтобы остановить поток ругательств в сторону водителя  Увести Ульяну назад в дом и оставить ее там, поскольку произошла очень неприятная ситуация  Оставаться спокойным и убедить Ульяну, что все в порядке  Принять такое поведение. Если водитель такси делает вид, что ничего не замечает, то пусть так и будет. Найти способы подстроиться  Ивану следует иметь с собой карточку, на которой будет написано: «У моей спутницы деменция, пожалуйста, будьте снисходительны к нам», и дать эту карточку водителю Модуль 5 У р о к 9 . И зм е н е н и я в с п о с о б н о с ти з д р а в о м ы сл и ть iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м 259 3. Что делать в случае более серьезных изменений в способности здраво мыслить? Описанный пример демонстрирует ситуацию, когда Иван сталкивается с коротким и единоразовым проявлением проблемы. Однако что будет происходить, если изменения в способности здраво мыслить у человека с деменцией будут проявляться гораздо более серьезно? Ниже три примера, которые помогут вам научиться реагировать на такие ситуации. Неправильное управление финансами У Анастасии деменция, и она живет одна. Ее приходит навещать двоюродная сестра Ангелина. Анастасия всегда была организованным человеком, но в этот раз Ангелина обнаруживает, что на кухонном столе лежит большая стопка нераспечатанной почты. Ангелина задает себе вопрос о том, оплатила ли Анастасия все счета вовремя. Она спрашивает Анастасию о том, что происходит с оплатой счетов. Анастасия не может вспомнить, оплатила она свои счета или нет, не знает, когда они должны быть оплачены, и не может вспомнить, сколько денег у нее на банковском счете. Ангелина начинает беспокоиться в связи с этим. 2. Проверьте себя Как управлять более серьезными изменениями в способности здраво мыслить (1) Что бы вы посоветовали Ангелине? Выберите все варианты правильного реагирования  Сохранять спокойствие и позвонить дочери Анастасии  Пойти в банк и попросить оформить контроль над финансами Анастасии  Уйти, потому что ее это сильно нервирует  Спросить Анастасию, хочет ли она, чтобы кто-нибудь помог ей разбирать почту  Постараться выяснить, помогает ли Анастасии кто-то управлять ее финансами, например, член семьи или специалист Модуль 5 У р о к 9 . И зм е н е н и я в с п о с о б н о с ти з д р а в о м ы сл и ть iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м 260 Вождение автомобиля У Никиты деменция. Его сосед Филипп в один из дней замечает, что машина Никиты припаркована неправильно и создает препятствие другим автомобилям на улице. Филипп выходит из своей квартиры, видит Никиту и пытается завязать разговор. Вместо того, чтобы остановиться, Никита запрыгивает в машину, быстро набирает скорость и выезжает с территории комплекса, поворачивая налево там, где это делать запрещено. Затем Никита быстро возвращается, и кажется, что ничего катастрофического не случилось. 3. Проверьте себя Как управлять более серьезными изменениями в способности здраво мыслить (2) Что бы вы посоветовали Филиппу? Выберите все варианты правильного реагирования  Немедленно, как только Никита вернется, отобрать у него ключи от автомобиля. Это предотвратит повторение такой ситуации  Сохранять спокойствие и спросить, надо ли Никите посетить еще какие-нибудь места сегодня, и если да, то предложить подвезти его  Игнорировать ситуацию, поскольку она неприятная  Спросить Никиту, нужна ли ему какая-то помощь в части обеспечения передвижения  Сказать Никите, что его вождение немного тревожит, и предложить сходить к врачу, чтобы обсудить это  Рассказать об этом инциденте лицу, осуществляющему уход за Никитой, другу или члену семьи Совет Будет лучше, если решение отказаться от вождения автомобиля исходит от самого человека с деменцией. Отказ от вождения автомобиля обычно достаточно тяжело дается человеку, поскольку он теряет свою независимость. Такие альтернативы, как предложение регулярных поездок на автомобиле, обучение человека пользованию общественным транспортом или организация такси, помогут ему оставаться активным и быть частью общества. Важно, чтобы человек не оставался изолированным или одиноким после того, как он отказался от вождения автомобиля. Потребуется больше усилий, чтобы поддерживать связь такого человека с внешним миром. Модуль 5 У р о к 9 . И зм е н е н и я в с п о с о б н о с ти з д р а в о м ы сл и ть iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м 261 Неуместные знаки внимания противоположному полу Станиславу далеко за 70, у него деменция и он живет со своей семьей. Два дня в неделю помощница на дому Кира, которой 22 года, приходит, чтобы помочь ему принять ванну и сделать уколы. Эта договоренность хорошо работает уже несколько месяцев. Однажды при подготовке к принятию ванны Станислав сделал несколько замечаний сексуального характера и попробовал притянуть Киру поближе к себе. Кира была шокирована и очень сильно удивлена. Она выбежала из комнаты и сказала его семье, что больше не сможет здесь работать. 4. Проверьте себя Как управлять более серьезными изменениями в способности здраво мыслить (3) Что бы вы посоветовали семье Станислава? Выберите все варианты правильного реагирования  Сохранить спокойствие и сказать Станиславу, что его поведение неприемлемо. Объяснить, кто такая Кира  Изменить ситуацию с принятием ванны. Возможно, Кира может приготовить все необходимое, при этом Станислав может принимать ванну самостоятельно  Изменить окружающую обстановку. Оставлять полотенце или халат на плечах Станислава, пока он моется в ванне, чтобы не вторгаться в его интимную сферу  Накричать на Станислава и пристыдить его за такое поведение  Игнорировать ситуацию Совет Если такие неадекватные знаки внимания противоположному полу будут продолжаться, то семья может принять решение нанять помощника-мужчину, и это, возможно, предотвратит такое поведение. Также они могут обратиться за помощью к профессионалу. Модуль 5 У р о к 9 . И зм е н е н и я в с п о с о б н о с ти з д р а в о м ы сл и ть iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м 262 Рассмотрим вашу конкретную ситуацию Важно применить то, что вы усвоили, в вашей конкретной ситуации. Ранее мы задавали вопрос, демонстрирует ли иногда человек, за которым вы ухаживаете, признаки изменения в способности здраво мыслить. После проработки данных примеров подумайте еще раз о своей собственной ситуации. Используйте место ниже для заполнения информации, аналогично записям в дневнике. Каким образом вы могли бы отреагировать? Выделите чуть больше времени и обобщите моменты, которые вы усвоили, пройдя данный урок. Это поможет вам в дальнейшем справляться с изменениями в способности здраво мыслить 2. Упражнение Совет Изменения в способности здраво мыслить могут затруднять процесс принятия решений. Если хотите узнать больше, вернитесь еще раз к Уроку 3. Поддерживающее принятие решений в Модуле 2. Демонстрирует ли иногда человек с деменцией изменения в способности здраво мыслить? Модуль 5 У р о к 9 . И зм е н е н и я в с п о с о б н о с ти з д р а в о м ы сл и ть iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м 263 Отлично, вы закончили данный урок! Краткий обзор того, что вы узнали  Изменения в способности здраво мыслить увеличиваются по мере прогрессирования деменции.  Изменения в способности здраво мыслить могут тревожить человека с деменцией, и лицо, осуществляющее уход.  Важно всегда, когда это возможно, сокращать или предотвращать проявления изменений в способности здраво мыслить.  Помните, что какие-то дни будут проходить лучше, а какие-то – хуже.  Напомните себе, что это – одно из проявлений болезни.  Сделайте глубокий вдох и подумайте о том, какой ответ будет самым щадящим для вас и для человека, за которым вы ухаживаете.  Планируйте заранее действия на случай дальнейшего ухудшения способности здраво мыслить. Модуль 5 У р о к 9 . И зм е н е н и я в с п о с о б н о с ти з д р а в о м ы сл и ть iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м 264 175 Модуль 5 ОТВЕТЫ — Как справляться с изменениями в поведении Урок 9. Изменения в способности здраво мыслить 1. Проверьте себя Как управлять справляться изменениями в способности здраво мыслить Что бы вы посоветовали Ивану? Прикрыть рот Ульяны рукой, чтобы остановить поток ругательств в сторону водителя. Такой ответ не очень хорош, поскольку после этого ситуация может даже ухудшиться, и Ульяна занервничает еще больше. Увести Ульяну назад в дом и оставить ее там, поскольку произошла очень неприятная ситуация. Такой ответ не очень хорош, поскольку Ульяне может быть очень обидно и одиноко. Оставаться спокойным и убедить Ульяну, что все в порядке. Это удачный ответ, поскольку он показывает, что Иван заботится об Ульяне. Это может помочь ей прекратить ругать водителя и немного успокоиться. Принять такое поведение. Если водитель такси делает вид, что ничего не происходит, то пусть так и будет. Найти способы подстроиться. Это может быть уместным вариантом реагирования, если такое поведение никому не вредит. Ивану следует иметь с собой карточку, на которой будет написано: «У моей спутницы деменция, пожалуйста, будьте снисходительны к нам», и дать эту карточку водителю. Это удачный ответ, поскольку это избавляет Ивана от необходимости объяснять ситуацию водителю, что могло бы смутить Ульяну. 265 О Т В Е Т Ы – К ак с п р ав л я ть ся с и зм е н е н и я м и в п о в е д е н и и . У р о к 9 iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м 175 ОТВЕТЫ — Как справляться с изменениями в поведении Урок 9. Изменения в способности здраво мыслить 2. Проверьте себя Как управлять справляться с более серьезными изменениями в способности здраво мыслить (1) Что бы вы посоветовали Ангелине? Сохранять спокойствие и позвонить дочери Анастасии. Это хороший ответ, поскольку Ангелина поделится своей озабоченностью с самым близким родственником Анастасии, ее дочерью, которая, возможно, знает больше и при необходимости сможет организовать помощь. Пойти в банк и попросить оформить контроль над финансами Анастасии. Этот вариант не подходит, поскольку только Анастасия может выбрать лицо, которому ей будет комфортно поручить управление финансами. Уйти, потому что ее это сильно нервирует. Этот ответ не подходит. Если у Анастасии проблемы с оплатой счетов, то, не вмешиваясь в ситуацию, мы можем усугубить ее. Спросить Анастасию, хочет ли она, чтобы кто-нибудь помог ей разбирать почту. Это хороший ответ, поскольку Анастасия, возможно, в состоянии сама оплачивать свои счета при небольших подсказках, например, если кто-то будет открывать письма и помогать разбираться с одним из счетов в данный конкретный момент. Постараться выяснить, помогает ли Анастасии кто-то управлять ее финансами, например, член семьи или специалист. Это удачный ответ, поскольку Анастасия на данном этапе болезни, возможно, больше не в состоянии самостоятельно разбираться со своими счетами. Если есть предположение, что ей никто не помогает со счетами, то Ангелина вполне может позвонить ее дочери, чтобы поделиться своей озабоченностью. Модуль 5 266 О Т В Е Т Ы – К ак с п р ав л я ть ся с и зм е н е н и я м и в п о в е д е н и и . У р о к 9 iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м 175 3. Проверьте себя Как управлять справляться с более серьезными изменениями в способности здраво мыслить (2) Что бы вы посоветовали Филипп? Немедленно, как только Никита вернется, отобрать у него ключи от автомобиля, поскольку таким образом можно будет предотвратить повторение такой ситуации. Это неудачный ответ, поскольку Филипп не может решать, разрешить ли соседу водить машину, а Никита может разозлиться. Сохранять спокойствие и спросить, надо ли Никите посетить еще какие-нибудь места сегодня, и если да, то предложить подвезти его. Это удачный ответ, поскольку Никита больше не будет водить автомобиль, создавая опасные ситуации, при этом ему будет обеспечено безопасное передвижение для выполнения всех его дел. Игнорировать ситуацию, поскольку она неприятная. Такой ответ не очень хорош, поскольку, продолжая водить машину, Никита может причинить вред себе и другим. Спросить Никиту, нужна ли ему какая-то помощь в части обеспечения передвижения. Такой ответ вполне уместен, поскольку Никита, возможно, в состоянии безопасно пользоваться автобусом или ходить пешком и контролировать небезопасное поведение. Сказать Никите, что его вождение вас немного тревожит, и предложить сходить ко врачу, чтобы обсудить это. Это удачный ответ, поскольку таким образом Филипп показывает Никите свое уважение, ведет себя честно и поднимает этот вопрос. Рассказать об этом инциденте лицу, осуществляющему уход за Никитой другу или члену семьи. Такое реагирование возможно. Филипп может не знать, страдает ли Никита деменцией, и может быть обеспокоен риском причинения вреда самому Никите и другим людям. Модуль 5 О Т В Е Т Ы – К ак с п р ав л я ть ся с и зм е н е н и я м и в п о в е д е н и и . У р о к 9 iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м 175 4. Проверьте себя Как управлять справляться с более серьезными изменениями в способности здраво мыслить (2) Что бы вы посоветовали семье Станислава? Сохранить спокойствие и сказать Станиславу, что его поведение неприемлемо. Объяснить, кто такая Кира Это хороший вариант. Реакция семьи Станислава не будет избыточной, поскольку они понимают, что у него развивается болезнь. Они по-новому определят границы для обеспечения безопасности Киры. Изменить ситуацию с принятием ванны. Возможно, Кира может приготовить все необходимое, при этом Станислав может принимать ванну самостоятельно Это хороший вариант. Если дать возможность Станиславу больше делать самостоятельно, это поможет отвлечь его. Таким образом будет проявлено уважительное отношение по отношению к Кире и Станиславу. Изменить окружающую обстановку. Оставлять полотенце или халат на плечах Станислава, пока он моется в ванне, чтобы не вторгаться в его интимную сферу. Это удачный ответ. Возможно, Станислав неверно понимает ситуацию, поскольку он без одежды. Накричать на Станислава и пристыдить его за такое поведение. Такой ответ не очень хорош, поскольку Станислав при его заболевании может не осознавать, что такие знаки внимания неприемлемы. Поэтому постарайтесь реагировать не слишком остро. Игнорировать ситуацию. Такой ответ не очень хорош, поскольку Станислав может продолжать проявлять неадекватные знаки внимания сексуального характера и неуважение к Кире. Модуль 5 268 О Т В Е Т Ы – К ак с п р ав л я ть ся с и зм е н е н и я м и в п о в е д е н и и . У р о к 9 iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м 1. Самое важное, что надо учитывать, когда сталкиваешься с изменениями в поведении  Изменения в поведении могут быть очень тяжелы, как для человека, за которым вы ухаживаете, так и для вас самих. Это довольно обычная ситуация.  Постарайтесь сделать так, чтобы человек, за которым вы ухаживаете, чувствовал себя максимально комфортно.  Ищите способы предотвратить или сократить проявления изменений в поведении, которые вызывают значительный стресс, например, с помощью памяток.  Попытайтесь отвлечь человека, за которым вы ухаживаете, и не спорьте с ним.  Если какой-то подход не срабатывает, пробуйте другой.  Помните, что какие-то дни будут проходить лучше, а какие-то – хуже.  Проконсультируйтесь с врачом, чтобы выявить какие-либо причины изменения в поведении, связанные с приемом лекарств или болезнью.  Постарайтесь определить, может ли что-то в окружающей обстановке быть причиной проявления какого-то конкретного симптома.  Напомните сами себе, что изменения в поведении – это одно из проявлений болезни, но также следует исключить другие возможные причины, прежде чем прийти к выводу, что дело только в болезни. Модуль 5 У р о к 1 0 . П о д в е д е н и е и то го в iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м Урок 10. Подведение итогов Почему этот урок важен? Определенные изменения в поведении могут быть особенно трудным моментом как для человека с деменцией, так и для лица, осуществляющего уход. Каким образом этот урок поможет мне? В данном уроке дается обзор способов предотвращения, сокращения или управления проявлениями изменений в поведении. Что я смогу узнать? 1. Самое важное, что надо учитывать, когда сталкиваешься со сложными изменениями в поведении близкого. 2. Практические советы о том, как не винить себя, делиться своими чувствами с другими и находить время для себя. 269 Отлично, вы закончили данный урок! 2. Практические советы о том, как не винить себя, делиться своими чувствами с другими и находить время для себя Ниже приведены несколько советов из соответствующих уроков. Если вы еще не изучили эти уроки, вы можете сделать это после того, как закончите работу с текущим уроком  Не вините себя или человека, за которым вы ухаживаете, за те проблемы, с которыми вы сталкиваетесь. Если вы хотите поработать над тем, как управлять своими эмоциями, взгляните на последнюю страницу в Уроке 3. «Мыслить по-другому» в Модуле 3.  Делитесь с другими людьми своими эмоциями, которые вы испытываете, будучи лицом, осуществляющим уход за человеком с деменцией. Если вы будете держать все в себе, то вам будет намного труднее присматривать за членом вашей семьи или другом. Если вы хотите узнать больше о том, как вовлекать других людей в уход, смотрите Урок 4. «Привлечение других» в Модуле 2.  Важно, чтобы вы оставляли время для себя. Это позволит вам уделить время тому, что вы цените в своей жизни, например, общению с близкими или любимым увлечениям. Если вы хотите узнать больше о том, как уделять время любимым занятиям, смотрите Урок 2. «Выделение времени для приятных занятий» в Модуле 3. Модуль 5 У р о к 1 0 . П о д в е д е н и е и то го в iS u p p o rt Р у к о в о д ст в о п о м е р о п р и я ти я м 270 Во всем мире лица, осуществляющие уход за людьми с деменцией, должны иметь доступ к информации и поддержке, чтобы эффективно реагировать на физические, психические и социальные потребности, связанные с уходом за человеком, живущим с деменцией, и управлять ими. iSupport был разработан для предоставления доступного, основанного на фактических данных, обучения и доступной информации с учетом потребностей лиц, осуществляющих уход. Платформа предназначена для усовершенствования знаний и приобретения навыков, которые позволят лицам, осуществляющим уход, справляться с симптомами деменции у их подопечных, учитывая собственные потребности.

Ònkọwé àti Ìkìlọ

Chief Tony Anenih Geriatric Centre, UCH, Ibadan, Nigeria 2025.

Ìtúmọ yìí kì í ṣe ti Ẹgbẹ Àgbáyé tó ń ṣètò ìlera (WHO). WHO kò ní ojuse kankan lórí akoonu tàbí ìtóótọ ìtúmọ yìí. Ẹ dà Gẹ ẹsì àkọkọ ni yóò jẹ ẹ dà tó ní agbára òfin àti tó dájú.

Geneva: Ilé Ẹkọ Àgbáyé Lórí Ìlera; [2019].Ìyàtọ àṣẹ: CC BY-NC-SA 3.0 IGO ni yóò jẹ ẹdà tó wúlò àti tó ní agbára ofin.

Ìtúmọ iṣẹ yìí wà lábẹ àṣẹ CC BY-NC-SA 3.0."

Ìtẹjáde Gẹẹsì àkọkọ ti Ẹgbẹ Àgbáyé tó ń ṣètò ìlera (WHO, 2018). iSupport fún àìlera ọpọlọ: Ìtòsọnà ìkẹkọọ àti ìtìlẹyìn fún àwọn tó ń tọjú àwọn ará tó ní àìlera ọpọlọ.

Lawrence A. Adebusoye. E-mail: lawrenceadebusoye@gmail.com.

Abiola O. Obadare. E-mail: obadareabiola@gmail.com.

Eniola O. Cadmus. E-mail: eniyolacadmus@gmail.com.

Mofoluwake Majekodunmi. E-mail: folukemajek@gmail.com.

Olufisayo O. Elugbadebo. E-mail: fisayoelu08@yahoo.com.

Olufemi O. Olowokere. E-mail: femikemi2001ng@yahoo.com.

Abimbola O. Atanda. E-mail: bimboatanda1@gmail.com.

Taiwo O. Adebowale. E-mail: adebowaletaiwo1963@gmail.com.

Olusegun O. Olawunni. E-mail: olabamijioluwasegun1@gmail.com.

Victor Ogaji. E-mail: vicogaji@gmail.com.

Adesola Ogunniyi. E-mail: aogunniyi53@yahoo.com.�

Ìjẹwọ àti Ìtẹwọgbà

Ìran, ìmúlò àfọmọ àti iṣakoso iṣẹ Adesola Ogunniyi (Olùdarí), Lawrence Adebusoye, Abiola Obadare, Eniola Cadmus.

Àwọn tó ṣe àfikún pàtàkì Àjọ àwọn àgbàlagbà ti CTAGC, UCH.

Àwọn ọmọ ẹgbẹ

ǹ

ǹ

iSupport-Korea

치매돌봄자를 위한

교육 및 지원 지침서

iS u

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돌 봄

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위 한

교 육

및 지

원 지

침 서

「iSupport-Korea(치매돌봄자를 위한 교육 및 지원 지침서)」 ⓒ 한국보건의료연구원 · 충남대학교 간호대학 2025

본 저작물은 세계보건기구(World Health Organization, WHO)에 의해 제작된 것이 아닙니다.

WHO는 문화적 적응을 거친 본 한국어판의 내용 또는 정확성에 대하여 어떠한 책임도 지지 않습니다.

원저작물인 영문판 iSupport for Dementia. Geneva: World Health Organization; 2019. Licence: CC BY-NC-SA 3.0 IGO가

법적 효력을 가지는 공식적이고 정본인 판본입니다.

본 한국어판은 크리에이티브 커먼즈 저작자표시-비영리-동일조건변경허락 3.0 라이선스(CC BY-NC-SA 3.0) 하에 제공됩니다.

본 책자는 2025년 한국보건의료연구원에서 수행한 「세계보건기구 치매돌봄자 온라인 지원프로그램 iSupport의 한국형 지침 개발 및 평가

(과제번호: NA25-008)」 연구의 일환으로 제작되었습니다.

본 책자의 내용을 활용하거나 문의 사항이 있을 경우에는 연구책임자 또는 연구진에게 문의하여 주시기 바랍니다.

iS u

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위 한

교 육

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집 필 진

박명화 │ 충남대학교 간호대학 교수

이　민 │ 한국보건의료연구원 연구위원

오응석 │ 충남대학교 의과대학 교수

이미현 │ 대전보건대학교 간호대학 교수

서성우 │ 한국보건의료연구원 주임연구원

손진솔 │ 충남대학교 간호대학 연구보조원

김민지 │ 충남대학교 간호대학 연구보조원

iSupport-Korea

치매돌봄자를 위한

교육 및 지원 지침서

iS u

p p

o rt-K

o re

a 치 매

돌 봄

자 위

한 교

육 및

지 원

지 침

서

목　차

사용 설명서

부록. 도움 받을 수 있는 기관

1부. 치매 이해하기

1장. 치매 이해하기

2부. 돌봄자 되기

1장. 함께하는 여정

2장. 의사소통 증진하기

3장. 의사결정 지지하기

4장. 주변의 도움 활용하기

3부. 나 자신 돌보기

1장. 일상생활의 스트레스 줄이기

2장. 즐거운 활동을 위한 시간 만들기

3장. 다른 관점으로 생각하기

4부. 일상생활 돌보기

1장. 즐거운 식사 시간 만들기

2장. 건강한 식사와 수분 섭취

3장. 배변 보조와 실금 관리

4장. 개인위생 관리

5장. 즐거운 하루 보내기

5부. 행동 변화에 대처하기

1장. 행동 변화에 대한 이해

2장. 기억력 저하

3장. 공격적인 행동

4장. 우울, 불안, 무감동

5장. 수면장애

6장. 망상과 환각

7장. 반복적인 행동

8장. 배회와 길 잃기

9장. 판단력 변화

10장. 조화롭게 대처하기

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목차

VI

사용설명서

전 세계 치매대상자의 돌봄자들은 자신의 필요에 맞는 정보와 지원에 접근할 수 있어야 합니다. 이러한 정보와 지원은 치매대상자를

돌보는 과정에서 발생하는 신체적, 정신적, 사회적 요구에 효과적으로 대응하기 위해 필수적입니다. 세계보건기구(WHO)가 개발한

치매돌봄자를 위한 교육 및 지원 지침서인 iSupport for Dementia – training and support manual for carers of people with

dementia는 돌봄자의 요구에 기반한 근거 기반 교육과 정보를 제공하기 위해 개발되었습니다.

본 지침서는 돌봄자가 치매 증상에 효과적으로 대처하고 돌봄자 스스로를 돌보는 능력을 향상시키는데 필요한 지식과 기술을

제공합니다. 또한 치매대상자가 지역사회에서 가능한 한 오래 생활할 수 있도록 돕는 한편, 돌봄자의 스트레스를 예방하고 완화하는

것을 목표로 합니다. 지침서의 모든 내용은 치매대상자를 돌보는 과정에서 돌봄자가 직면할 수 있는 주요 문제를 해결할 수 있도록

세심하게 구성되어 있습니다.

지침서는 어떤 내용으로 구성되어 있을까요?

1부: 치매 이해하기 치매로 인해 치매대상자에게 나타날 수 있는 주요 변화와 가족이나 친구가 치매 진단을

받았다면 어떻게 대응해야 하는지 등 치매에 대한 기본적인 정보를 제공합니다.

2부: 돌봄자 되기 치매대상자를 효과적으로 돌보기 위해 필요한 역량을 다룹니다. 특히, 의사소통을 개선하고,

의사결정을 함께 하는 방법 및 다른 사람들을 돌봄에 참여시키는 방법을 중점적으로 다룹니다.

3부: 나 자신 돌보기 돌봄자의 스트레스를 완화시키기 위해 즐거운 활동을 위한 시간을 마련하고 돌봄상황에 대해

긍정적으로 생각하도록 전환하는 것을 목표로 합니다.

사용설명서

VII

사용설명서

4부: 일상생활 돌보기 즐거운 식사 시간 만들기와 건강 문제를 예방하기 위한 식사 및 수분 섭취 방법, 배변 보조와

실금 관리, 개인위생과 일상생활 지원 등의 내용을 다룹니다.

5부: 행동 변화에

대처하기

치매대상자에게 흔히 나타날 수 있는 행동 변화를 소개합니다. 이러한 변화는 대상자뿐 아니라

돌봄자도 고통스럽고 힘든 과정입니다. 흔히 나타날 수 있는 행동 변화로는 기억력 저하, 공격성,

우울, 불안, 수면장애, 망상과 환각, 반복 행동, 배회와 길 잃기, 그리고 판단력 변화 등이

포함됩니다.

지침서는 누구에게 도움이 될까요?

본 지침서는 치매대상자를 돌보는 모든 돌봄자, 즉 가족, 친지, 친구뿐만 아니라 공식적 〮비공식적 돌봄자를 위해 만들어졌습니다.

또한 다음과 같은 경우에 도움이 될 수 있습니다.

• 치매대상자의 돌봄자를 대상으로 기술 훈련, 지원 및 정보를 제공하는 민간기관이나 단체

• 돌봄자에게 지원과 정보를 제공하는 보건 및 사회서비스 분야 종사자

• 치매에 대한 의료기술 개발, 서비스 제공, 보험 정책 등에 관여하는 관계자

VIII

사용설명서

지침서의 구성

• 치매는 무엇이며 어떤

영향을 미치는지

알아보기

• 함께하는 여정

• 의사소통 증진하기

• 의사결정 지지하기

• 주변의 도움 활용하기

• 일상생활의 스트레스

줄이기

• 즐거운 활동을 위한

시간 만들기

• 다른 관점으로 생각하기

• 즐거운 식사 시간

만들기

• 건강한 식사와 수분

섭취

• 배변 보조와 실금 관리

• 개인위생 관리

• 즐거운 하루 보내기

• 행동 변화에 대한 이해

• 기억력 저하

• 공격적인 행동

• 우울증, 불안, 무감동

• 수면장애

• 망상과 환각

• 반복적인 행동

• 배회와 길 잃기

• 판단력 변화

• 조화롭게 대처하기

부록: 도움 받을 수 있는 기관

1부

치매 이해하기

2부

돌봄자 되기

3부

나 자신 돌보기

4부

일상생활 돌보기

5부

행동변화에

대처하기

IX

사용설명서

지침서는 어떻게 만들어졌나요?

본 지침서는 세계보건기구(WHO)의 치매대상자의 돌봄자를 위한 정신건강 격차 해소 프로그램(mhGAP) 가이드라인에 근거를

두고 있습니다. 정신건강 격차 해소 프로그램은 모든 국가를 대상으로 정신건강 및 신경건강 문제와 약물 사용 장애에 대처하기

위한 의료 및 사회적 서비스의 확대를 목표로 하고 있습니다. 지침서의 돌봄자 교육 및 지원 방법은 프로그램의 실행 가능성과

효과성에 대한 근거를 바탕으로 개발되었으며 대면 및 비대면 방식 모두 가능합니다.

지침서는 치매대상자 돌봄과 인터넷 기반 중재 분야의 국제적 전문가들의 협력으로 개발되었으며, 치매대상자를 보살피는

돌봄자의 목소리를 반영하고 있습니다.

지침서 개발과정에 대한 자세한 내용은 Pot et al (2019)¹의 자료를 참고하기를 바랍니다.

지침서는 어떻게 사용할 수 있을까요?

본 지침서는 치매대상자를 보살피는 돌봄자를 위한 자기관리 안내서입니다. 각 부는 세부내용을 다루는 장으로 나눠져 있습니다.

모든 장은 동일한 방식으로 구성되어 있으며, 도입부에서는 해당 내용이 왜 중요한지, 돌봄자로서 어떤 도움을 받을 수 있는지,

무엇을 배울 것인지에 대한 전반적인 정보를 제공합니다. 이어지는 내용으로는 필요한 정보를 전달하기 위한 자료, 이야기식 사례,

선택형 질문, 그리고 배운 내용을 적용하는 활동으로 구성되어 있습니다. 사용자는 지침서의 내용을 처음부터 끝까지 전체적으로,

혹은 자신의 상황과 가장 연관된 부분만 선택하여 활용할 수 있습니다. 또한 필요에 따라 원하는 내용으로 돌아가 다시 시작할

수도 있습니다.

(1) Pot AM, Gallagher-Thompson D, Xiao LD, Willemse BM, Rosier I, Mehta KM, Zandi D, Dua T. iSupport: a WHO global online intervention

for informal carers of people with dementia. World Psychiatry. 2019. Oct; 18(3): 365-366

X

사용설명서

지침서 전반에 걸쳐 참여하게 될 학습과정과 활동은 다음과 같이 구성되어 있습니다.

이러한 학습과정과 활동을 통해 치매 돌봄에 대한 이해도를 높이고, 배운 내용을 실제 돌봄에 효과적으로 적용하는데 도움이 될 것입니다.

도움말/알림/기억하기

배운 내용을 되돌아보고, 해당 내용을 일상생활에 적용할

수 있도록 실질적으로 도움이 되는 정보를 강조하여

알려줍니다.

확인하기

지침서에서 다룬 내용을 점검할 수 있는 질문을 제시합니다.

해답은 각 장의 마지막에서 확인할 수 있습니다.

예: 치매가 있으면 기억력에 문제가 생깁니다.

□ 예

□ 아니오

활동하기

활동을 통해 치매대상자를 돌보는 일이 돌봄자 자신과

대상자의 삶에 어떤 영향을 미치는지 되돌아보는 시간을

가집니다.

예: 지금 기분이 어떠신가요?

해당하는 항목에 모두 표시해 보세요.

□ 슬픔

□ 기쁨

□ 화남

□ 혼란

이완활동

이완 활동은 돌봄자가 편안함을 느끼고 스트레스를

줄이는 데 도움이 됩니다. 3부에서는 이러한 이완 활동에

대해 보다 자세한 내용을 안내합니다.

XI

사용설명서

지침서의 그 외 활용 방법

돌봄자의 자기관리를 위한 지침을 주목적으로 하지만, 그 외 목적을 위해서도 폭넓게 사용할 수 있습니다.

예를 들어

1) 자원봉사자나 의료종사자에게 도움이 되는 내용을 추가하여 사용할 수 있습니다.

2) 치매대상자의 돌봄자를 위한 체계적 교육이나 지원 모임 등 집단 활동을 위한 도구로도 사용할 수 있습니다.

3) 자조 모임 참여자를 위한 참고 도구로도 사용될 수 있습니다.

4) 의료 종사자들이 돌봄자를 돕고 지원하는 데 유용하게 사용할 수 있습니다.

교육 프로그램과 지침서는 지속적인 현장 검증과 평가를 실시하고 있습니다.

지역의 특성에 따른 적용 및 실행 효과를 평가하기 위해 추가적인 연구가 계속 진행되고 있습니다.

지침서를 지역에 맞게 적용하는 방법은 무엇인가요?

iSupport 지침서는 국가별 또는 지역별 상황과 필요에 맞게 적용할 수 있게 제공됩니다. 이 과정에서 국가별, 지역별 적용 과정을

위한 적용 및 실행 가이드가 함께 제공됩니다.

WHO는 iSupport의 저작권을 소유하고 있습니다. iSupport의 적용과 실행에 관심이 있다면 WHO(whodementia@who.int)로

연락하여 저작권 라이선스를 요청하세요. 이는 iSupport 지침서와 관련된 모든 온라인 프로그램에 적용됩니다.

iS u

p p

o rt-K

o re

a 치 매

돌 봄

자 를

위 한

교 육

및 지

원 지

침 서

1장. 치매 이해하기

제1부

치매 이해하기

제1부 치매 이해하기

1부. 치매 이해하기

2

1장. 치매 이해하기

왜 중요한가요? 치매는 대상자뿐만 아니라 돌봄자에게도 큰 부담이 될 수 있는 질병입니다.

치매에 대한 여러 가지 오해가 존재하기 때문에, 치매에 대해 올바르게 이해하는 것은 흔히 가지기

쉬운 잘못된 인식을 바로잡는데 도움이 됩니다.

어떤 도움이

되나요?

치매가 무엇이며, 치매가 어떤 영향을 미치는지에 대한 기본적인 이해를 돕습니다.

이러한 내용은 돌봄자가 꼭 알아두어야 할 정보입니다.

배우게 될 내용은

무엇인가요?

1. 치매란 무엇인가요?

2. 치매의 원인은 무엇인가요?

3. 치매가 진행되면 치매대상자에게

어떤 일이 일어날 수 있나요?

4. 가족이 치매에 걸렸다고 생각된다면

어떻게 해야 할까요?

5. 도움을 요청하는 방법은 무엇인가요?

6. 본 지침서의 목적은 무엇인가요?

1장. 치매 이해하기

1부. 치매 이해하기

3

1장. 치매 이해하기

1. 치매란 무엇인가요?

치매는 시간이 지나면서 뇌가 점차 손상되는 질병입니다. 치매는 사회적 지위, 성별, 경제상태, 민족, 지리적 위치와 관계없이

누구에게나 영향을 미칠 수 있습니다. 치매는 일반적인 노화 과정이 아닙니다. 주로 고령자에게 더 흔하지만, 젊은 사람에게도

발생할 수 있습니다.

2. 치매의 원인은 무엇인가요?

치매는 신경세포를 파괴하고 뇌를 손상시키는 다음의 여러 원인 질환에 의해 발생합니다.

알츠하이머병

알츠하이머병은 전체 치매 중 약

50-60%의 높은 비율을 차지하는

가장 흔한 원인입니다. 이 질환은 뇌의

세포와 신경을 조금씩 손상시키며,

기억을 저장하고 정보를 전달하는

데 필요한 화학물질을 감소시킵니다.

이로 인해 시간이 지남에 따라 기억력,

언어 능력, 판단력이 점점 저하됩니다.

혈관성 치매

혈관성 치매는 혈관이 손상되어

뇌로 가는 산소 공급이 차단되어

뇌세포가 죽고, 이로 인해 기억력,

언어, 운동기능 등에 문제가 생기는

질환입니다. 혈관성 치매의 증상은

갑작스러운 뇌졸중 후 나타나거나,

여러 차례의 작은 뇌졸중이 누적된

후 서서히 나타날 수도 있습니다.

혈관성 치매는 전체 치매 사례 중 약

20~30%를 차지합니다.

루이소체 치매

루이소체 치매는 알츠하이머병

다음으로 흔한 치매의 퇴행성 원인

질환으로 뇌신경 세포에 루이소체라고

하는 비정상적 단백질 덩어리가

축적되어 뇌세포가 퇴화하고 죽어가는

과정에서 발생합니다. 루이소체

치매는 알츠하이머병과 유사한 치매의

특징적인 증상 외에도, 파킨슨병과

같은 운동증상도 흔하게 함께

나타납니다.

1부. 치매 이해하기

4

1장. 치매 이해하기

전두측두엽 치매

전두측두엽 치매는 초기에 성격변화, 감정 조절의 어려움,

이상행동 등 정서와 행동에 많은 영향을 주는 것이

특징입니다. 뇌의 앞부분인 전두엽과 옆쪽 아래 부분인

측두엽에 국한된 병리적 변화로 인해 전두엽-측두엽의

기능이 저하되는 퇴행성 치매의 일종입니다.

드물게 나타나는 원인

이외에도 알코올성 치매나

후천성면역결핍증(HIV/AIDS)으로 인한 치매처럼

다소 드물게 발생하는 원인들도 있습니다.

3. 치매가 진행되면 치매대상자에게 어떤 일이 일어날 수 있나요?

치매는 모든 사람에게 동일하게 나타나지 않습니다. 사람마다 고유한 특성을 지니고 있기 때문에, 치매가 미치는 영향도 다르게

나타납니다. 치매로 인한 어려움은 단지 뇌가 어느 정도 손상되었는지 뿐만 아니라, 그 사람의 성격, 인생 경험, 전반적인

건강상태와 기능, 그리고 생활환경 같은 다른 요인들에 의해 달라질 수 있습니다.

확인하기 1. 치매에 걸리면 어떤 일이 생기나요?

치매가 있는 사람들은 물건을 자주 잃어버리거나 기억력에 문제가 있습니다.

맞으면 ‘예’, 틀리면 ‘아니오’에 표시하세요.

□ 예

□ 아니오 정답확인

1부. 치매 이해하기

5

1장. 치매 이해하기

치매의 단계

치매 증상은 가벼운 기억력 저하부터, 일상생활을 혼자서는 관리할 수 없을 정도로 심각한 기억력

및 사고력 저하까지 다양합니다. 치매를 이해하는 데 도움이 되는 방법 중 하나는 이를 여러 단계로

나누어 살펴보는 것입니다.

하지만 이렇게 단계를 구분하는 것도 치매의 진행에 대한 대략적인 안내일 뿐이라는 것을 기억해야

합니다. 모든 치매대상자가 동일한 증상을 겪는 것은 아니며, 일부 증상은 특정 단계에서만 나타날 수

있으며 개인에 따라 양상과 속도가 달라질 수 있습니다.

치매 초기 단계에서는 기억력 저하가 나타나고, 시간 감각에 혼란을 느끼며, 익숙한 장소에서 길을 잃거나 결정을 내리는데

어려움을 겪을 수 있습니다.

치매가 중기 단계로 진행되면, 기억력 저하가 더욱 심해지고 쇼핑, 옷 입기, 세면 등 일상 활동에 타인의 도움이 필요할 수

있습니다.

말기 단계의 치매대상자는 더 이상 가까운 가족이나 친구를 알아보지 못할 수 있으며, 자신과 주변 사람들을 불편하고 힘들게 하는

행동 변화를 보일 수 있습니다.

1부. 치매 이해하기

6

1장. 치매 이해하기

활동하기

다음은 치매대상자에게 흔히 일어날 수 있는 증상이나 변화입니다.

가족, 친구, 또는 돌보고 있는 사람이 다음 중 어떤 경험을 하고 있다고 생각하나요?

적절하다고 생각하는 항목에 모두 표시해 보세요.

가족, 친구, 또는 돌보고 있는 사람이... 예시

몇 분 전의 일을 기억하는 데 어려움이 있나요? □ 예

□ 아니오

- 최근의 일을 기억하지 못합니다.

- 같은 질문을 여러 번 합니다.

일상적인 활동을 하는 것을 어려워 하나요? □ 예

□ 아니오

- 돈 관리에 어려움이 있습니다.

- 물건 구매에 어려움이 있습니다.

- 식사 준비에 어려움이 있습니다.

시간이나 장소 파악에 어려움을 겪나요? □ 예

□ 아니오 - 약속한 날짜와 시간을 잊어버립니다.

전과 다른 방식으로 의사소통하고 있나요? □ 예

□ 아니오

- 본인의 의사를 표현하는 데 어려움이 있습니다.

- 정확한 단어를 찾기 어려워 합니다.

물건을 다른 곳에 두는 일이 있나요? □ 예

□ 아니오

- 열쇠같이 일상적인 물건을 잘 찾지 못합니다.

- 물건을 누군가 훔쳐 갔다고 의심합니다.

사회생활을 하는데 문제가 있나요? □ 예

□ 아니오

- 사회적인 활동에 참여할 때 어려움이 있습니다.

- 무언가 하고 싶은 욕구가 줄어들어 보입니다.

감정이나 성격에 변화가 있나요? □ 예

□ 아니오

- 감정 기복이 심해집니다.

- 이전보다 불안을 더 자주 느낍니다.

1부. 치매 이해하기

7

1장. 치매 이해하기

4. 가족이 치매에 걸렸다고 생각된다면 어떻게 해야 할까요?

가족이나 친구가 치매일 가능성이 있다고 생각된다면, 가장 먼저 해야 할 일은 우선 의료진을 만나도록 하는 것이 좋습니다.

의료진은 신체와 뇌 기능에 대한 전반적인 검사를 통해 기억력 저하의 원인을 평가합니다. 우울증, 요로 감염, 약물 부작용, 비타민

결핍, 뇌종양과 같은 치료 가능한 다른 원인으로 인해 발생했는지 확인하는 것이 중요합니다. 기억력 저하가 치매로 인한 것인지

아니면 다른 원인으로 인한 것인지 파악해야 합니다. 이러한 판단은 본 지침서가 아니라 의료진만 할 수 있습니다.

확인하기 2. 당신이 돌보는 사람이 치매에 걸렸다고 생각된다면 어떻게 해야 할까요?

가족이나 친구가 치매에 걸렸다고 생각된다면, 첫 번째 단계는 무엇일까요?

적절하다고 생각하는 항목에 모두 표시해 보세요.

□ 의료진과 상의하지 않고, 다른 친구나 친지에게 연락해 해결 방법을 결정합니다.

□ 도움을 받기 위해 본 지침서만을 참고합니다.

□ 병원 진료를 예약합니다.

□ 가까운 치매 안심센터에 방문합니다. 정답확인

1부. 치매 이해하기

8

1장. 치매 이해하기

5. 도움을 요청하는 방법은 무엇인가요?

중요한 것은 치매대상자에게 필요한 모든 돌봄을 돌봄자 혼자 감당하기는 어렵다는 점을 인정하는 것입니다.

특히 시간이 지나고 상황이 복잡해질수록 더욱 그렇습니다.

따라서 가족, 친구, 전문 기관이나 지역사회 서비스에 적극적으로 도움을 요청할 것을 권장합니다.

지역마다 그 지역에서 활용가능한 자원이 있습니다. 무료로 제공되는 서비스도 있고, 유료로 제공되는 서비스도 있습니다.

가까운 치매안심센터에 문의하면, 본인의 지역에서 이용할 수 있는 정보, 지원 및 돌봄서비스를 안내받을 수 있습니다.

이처럼 필요한 정보를 미리 알아보는 것이 돌봄자뿐만 아니라 치매대상자에게도 도움이 됩니다.

6. 본 지침서의 목적은 무엇인가요?

본 지침서는 치매대상자를 돌보는 여러분, 즉 돌봄자를 위한 내용으로 구성되어 있습니다.

치매 돌봄은 때로는 감당하기 어려울 수 있기 때문에, 본 지침서는 일상적인 돌봄을 보다 잘 해낼 수 있도록 실질적인 지원을

제공합니다.

또한 치매대상자를 돌보는 것뿐만 아니라, 돌봄자 자신을 돌보는 일도 매우 중요합니다. 따라서 본 지침서는 돌봄자가 자신을

스스로 돌보는 방법도 함께 안내할 것입니다.

치매대상자에게 흔히 일어날 수 있는 다양한 상황들을 소개하고, 그러한 상황에서 어떻게 대처할지 미리 준비하고 연습할 수

있도록 돕고자 합니다.

1부. 치매 이해하기

9

1장. 치매 이해하기

기억하기

• 치매는 뇌에 영향을 미치는 질병입니다.

• 치매는 흔히 발생하며 특히 고령자에게 더 많이 발생합니다.

• 치매는 노화의 일부 과정이 아니라 뇌에 영향을 미치는 질병입니다.

• 치매가 의심된다면 가능한 먼저 의료진과 상담하는 것이 중요합니다.

• 치매대상자를 돌보는 것만큼 돌봄자인 자신을 돌보는 일도 매우 중요합니다.

• 본 지침서는 돌봄자인 당신을 지원하기 위해 만들어졌습니다.

1부. 치매 이해하기

10

1장. 치매 이해하기 (해답)

확인하기 1. 치매에 걸리면 어떤 일이 생기나요?

치매가 있는 사람들은 물건을 자주 잃어버리거나 기억력에 문제가 있습니다.

Ｏ 예

치매대상자들은 종종 무언가를 잊어버리거나 기억하는 데 어려움을 겪습니다.

Ｘ 아니오

확인하기 2. 당신이 돌보는 사람이 치매에 걸렸다고 생각된다면 어떻게 해야 할까요?

가족이나 친구가 치매에 걸렸다고 생각된다면, 첫 번째 단계는 무엇일까요?

Ｘ 의료진과 상의하지 않고, 다른 친구나 친지에게 연락해 해결 방법을 결정합니다.

친구와 친지들이 도와줄 수 있지만, 전문가에 의한 의학적 검진을 대신할 수는 없습니다.

Ｘ 도움을 받기 위해 본 지침서만을 참고합니다.

지침서는 정보와 지원을 제공하지만, 전문가에 의한 의학적 검진을 대신할 수는 없습니다.

Ｏ 병원 진료를 예약합니다.

아직 진료를 받지 않았다면, 이것이 가장 중요한 첫 번째 단계입니다.

Ｏ 가까운 치매 안심센터에 방문합니다.

이미 중요한 첫 번째 단계를 마쳤음을 의미합니다.

1부. 치매 이해하기

11

1장. 치매 이해하기

이번 과정을 마쳤습니다!

잘하셨습니다!

iS u

p p

o rt-K

o re

a 치 매

돌 봄

자 를

위 한

교 육

및 지

원 지

침 서

1장. 함께하는 여정

2장. 의사소통 증진하기

3장. 의사결정 지지하기

4장. 주변의 도움 활용하기

돌봄자 되기

제2부

제2부 돌봄자 되기

2부. 돌봄자 되기

13

1장. 함께하는 여정

왜 중요한가요? 치매는 치매대상자와 돌봄자 모두의 일상에 많은 변화를 가져오기 때문에 함께 걸어가야 하는

여정입니다.

어떤 도움이 되나요? 돌봄자와 치매대상자가 함께하는 여정을 이어갈 수 있도록 도와줍니다.

돌봄자와 대상자가 서로 관계를 유지하고, 다른 사람들을 돌봄에 참여시키며, 돌봄자 자신을 돌보고

미래를 계획하는 방법을 배울 수 있습니다.

배우게 될 내용은

무엇인가요?

1. 시간이 지나면서 돌봄자의 역할은 어떻게 달라질까요?

2. 치매대상자와의 관계를 어떻게 유지할 수 있을까요?

3. 즐거운 활동과 휴식을 어떻게 계획하면 좋을까요?

4. 다른 사람들을 돌봄에 어떻게 참여시킬 수 있을까요?

5. 미래를 잘 계획하기 위해서는 어떻게 해야 할까요?

1장. 함께하는 여정

2부. 돌봄자 되기

14

1장. 함께하는 여정

1. 시간이 지나면서 돌봄자의 역할은 어떻게 달라질까요?

치매가 진행되면서 돌봄자로서 자신의 역할이 달라지고 있다고 느낄 수 있습니다. 하지만 치매의 초기 단계에서는 여전히 다양한

활동을 함께 즐길 수 있습니다. 치매가 진행됨에 따라, 치매대상자는 일상적인 활동을 하는데 더 많은 어려움을 겪게 됩니다.

돌봄자는 약을 복용하게 하거나 병원에 데려가는 등 일상생활에서 다양한 도움을 제공하게 됩니다. 치매 중기와 후기 단계에서는

더 많은 돌봄을 제공하게 됩니다. 목욕, 화장실 사용, 옷 입기 같은 개인적인 돌봄까지 요구되어, 때로는 돌봄자에게 큰 부담이 될

수 있으며 스트레스를 유발할 수 있습니다.

사례를 살펴봅시다.

이정심 씨는 치매를 진단받았으며 남편과 함께 살고 있습니다. 지난 몇 달 사이, 기억력 문제가 점점 더 자주 발생하고 있습니다.

최근에는 쇼핑을 하러 갔다가 무엇을 사야 할지 기억나지 않아 엉뚱한 물건을 사서 집에 돌아왔고, 이에 대해 심한 좌절감을

느꼈습니다.

확인하기 1. 기억력 저하와 관련된 좌절감

남편은 아내 이정심 씨의 기억력 저하를 어떻게 대해야 할까요?

적절하다고 생각하는 항목에 모두 표시해 보세요.

□ 아내가 혼자 있을 때, 어떤 일이 일어나는지 지켜봅니다.

□ 기억하기 위해 더 노력하라고 말합니다.

□ 더 이상 쇼핑을 하지 못하도록 합니다.

□ 기억력 저하에 대해 어떻게 느끼는지 묻습니다.

□ 비난하지 않고, 쇼핑 전에 함께 쇼핑 목록을 작성합니다. 정답확인

2부. 돌봄자 되기

15

1장. 함께하는 여정

2. 치매대상자와 관계를 유지하는 방법은 무엇인가요?

함께 대화를 계속하는 것이 중요합니다. 가능한 한 빨리 돌봄을 받는 사람과 돌봄자가 치매가 각자에게 어떤 영향을 미칠 수

있는지에 대해 서로 이야기하는 것이 좋습니다.

시간이 지나면 치매로 인해 이런 대화가 점점 더 어려워질 수 있습니다.

현재 일어나고 있는 변화와 앞으로 예상되는 변화에 대해 함께 이야기하세요.

서로 관계를 유지하면서 시간이 지나면서 나타날 수 있는 변화에 지속적으로 상의하는 것이 필요합니다.

도움말

다음은 치매대상자와 보다 잘 소통하는 데 도움이 되는 몇 가지 방법입니다:

• 간단한 문장을 사용합니다.

• 돌봄자는 자신의 감정을 조절하려고 노력합니다.

• 돌봄자 자신을 위한 시간과 함께 보내는 시간을 균형있게 마련합니다.

치매대상자와의 소통을 원활히 하는 데 도움이 되는 추가 정보는

2부 2장 <의사소통 증진하기>에서 확인할 수 있습니다.

특히 치매 후기 단계에서의 소통 방법을 자세히 다루고 있습니다. 함께 대화를 계속하는 것이 중요합니다.

2부. 돌봄자 되기

16

1장. 함께하는 여정

3. 즐거운 활동과 휴식을 어떻게 계획하나요?

질병이 진행될수록 돌봄에 필요한 시간이 점점 늘어날 수 있습니다.

그로 인해 일부 돌봄자는 자신을 위한 시간을 충분히 갖기 어려워지기도 합니다.

하지만 돌봄자가 자신을 잘 돌보지 못하면, 돌봄을 받는 사람에게도 충분한 지원을 제공하기 어렵습니다.

따라서 스트레스를 해소하고 건강을 챙기는 것은 돌봄자에게 매우 중요합니다.

함께하는 여정을 지속하기 위해서는 돌봄자 자신을 위한 즐거운 활동과 휴식을 계획하는 것이 필요합니다.

휴식을 취하는 방법에 대한 자세한 내용은

3부 <나 자신 돌보기>의 1장 <일상생활의 스트레스 줄이기>를 참고하세요.

감정을 다스리는 방법에 대한 자세한 내용은

3부 3장 <다른 관점으로 생각하기>를 참고하세요.

자신을 위한 즐거운 활동을 계획하는 방법에 대해서는

3부 2장 <즐거운 활동을 위한 시간 만들기>를 참고하세요.

중요한 것은 자신을 돌보는 것입니다.

2부. 돌봄자 되기

17

1장. 함께하는 여정

4. 다른 사람들을 어떻게 돌봄에 참여시킬 수 있나요?

돌봄은 때때로 친구나 가족과의 관계에 어려움을 줄 수 있습니다. 돌봄자는 자신이 겪는 일을 주변 사람들이 잘 이해하지 못한다고

느끼기 쉽습니다. 하지만 자신의 생각과 감정을 다른 사람과 나누면 기분이 훨씬 좋아질 수 있습니다. 치매대상자를 돌보는 일은

결코 혼자 감당해야 할 외로운 경험이 아닙니다. 한 사람이 전부 책임지기에 너무 벅찬 일이기 때문에, 휴식이 필요할 때는 친구나

가족에게 도움을 요청하세요. ‘확인하기’를 통해 주변 사람들을 어떻게 돌봄에 참여시킬 수 있을지 함께 알아봅시다.

확인하기 2. 상충하는 일정으로 인한 스트레스

강선율 씨의 시어머니는 치매 진단을 받았으며, 외출 후 길을 잃으신 적이 있습니다. 강 씨는 다음

날 회사에서 중요한 일정이 있어서 아침 7시 30분에 출근해야 하지만, 요양보호사는 오전 9시에

도착할 예정입니다. 이로 인해 시어머니가 한 시간 이상 혼자 있어야 하는 상황이 되었고, 강 씨는

시어머니를 혼자 두어도 괜찮을지 고민하며, 어떻게 해야 할지 몰라 스트레스를 느끼고 있습니다.

며느리 강선율 씨는 이 상황에 어떻게 대처할 수 있을까요?

적절하다고 생각하는 항목에 모두 표시해 보세요.

□ 시어머니를 혼자 두고 상황을 지켜봅니다.

□ 근처에 사는 가족에게 요양보호사가 올 때까지 시어머니를 지켜봐 달라고 부탁합니다.

□ 시어머니에게 혼자 잘 있어달라고 부탁합니다.

□ 남편에게 출근을 늦추고 요양보호사가 올 때까지 시어머니와 함께 있어 달라고 부탁합니다.

□ 요양보호사에게 가능하면 조금 더 일찍 와 달라고 요청합니다. 정답확인

2부. 돌봄자 되기

18

1장. 함께하는 여정

5. 미래를 잘 계획하기 위해서는 어떻게 해야 하나요?

미래에 대한 준비는 반드시 함께 상의해야 할 중요한 주제입니다. 누가 돌봄을 맡을지, 앞으로의 돌봄 비용을 어떻게 감당할지,

더 집중적인 돌봄이 필요할 때 어떻게 해야 할지, 그리고 임종에 관한 결정까지도 함께 상의해서 결정해야 합니다.

많은 돌봄자들이 그러하듯 누구나 미래가 걱정될 수 있습니다. 하지만 앞날을 일찍 계획할수록 준비가 쉬워지고, 더 나은 결과를

얻을 수 있으며 돌봄을 받는 사람도 자신의 의사를 더 잘 표현할 수 있습니다. 가능하다면, 걱정되는 주제에 대해 미리 이야기를

나누는 것이 바람직합니다.

1. 활동하기

다음은 돌봄자가 자주하는 질문들입니다.

이 질문들은 여러분이 돌보고 있는 사람과 함께 미리 상의해 볼 수 있는 좋은 주제들입니다.

다음 질문에 대한 답변을 적어 보세요:

돌봄을 받는 사람이 더 이상 혼자 목욕할 수 없을 때, 어떤 도움을 원하나요?

예를 들어, 남성이나 여성 중 누가 목욕을 도와주기를 원하나요?

가까운 가족이 목욕을 도와주는 것에 대해 어떻게 느끼나요?

자격을 갖춘 전문가에게 도움 받는 것을 더 선호하나요?

돌봄을 받는 사람이 가능한 한 오래 스스로 하고 싶어 하는 활동은 무엇인가요?

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19

1장. 함께하는 여정

1. 활동하기

집에서 생활하면서 더 많은 도움이 필요해진다면, 당신이 돌보고 있는 사람은 현재 또는 앞으로 어떤 종류의 도움을 원할

것이라 생각하나요? (예: 목욕이나 식사 준비 같은 일상생활 지원, 병원 진료 예약 등 의료서비스 도움, 장례나 유언 관련)

삶의 마지막 순간에 가까워졌을 때, 당신이 돌보고 있는 사람이 바라는 것은 무엇일까요?

(예: 통증 없이 편안하게 지내는 것, 가족과 함께 있는 것, 자신의 의사를 존중 받는 것)

이외에도, 당신이 돌보고 있는 사람과 함께 미리 상의하고 싶은 질문이 있다면 자유롭게 적어보세요.

(예: 어떤 치료를 원하거나 원하지 않는지, 누가 돌봄 결정을 대신해주길 바라는지, 자산관리를 어떻게 하고 싶은지)

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20

1장. 함께하는 여정

친밀한 관계는 변화할 수 있습니다.

치매라는 여정을 함께 겪어오면서, 부부간의 친밀한 관계에도 변화가 생길 수 있습니다.

초기에는 배우자 간 친밀한 관계가 여전히 가능할 수 있습니다.

그러나 치매가 진행되면서 성적 관계나 신체적 친밀감을 느끼는 것이

점점 더 어려워질 수 있습니다.

사례를 살펴봅시다.

이화담 씨는 치매 초기 단계에 있으며, 남편과 함께 살고 있습니다.

현재 두 사람은 여전히 건강하고 만족스러운 신체적 관계를 유지하고 있지만,

남편은 언젠가 이러한 관계가 변하거나 사라질 날을 걱정하고 있습니다.

2. 활동하기

아내 이화담 씨의 치매가 점점 진행되고 있습니다. 남편이 아내와의 친밀감을 유지하기 위해서는 어떤 방법을 시도해 볼 수

있을까요?

본격적으로 친밀감에 대해 알아보기 전에 한 번 생각해 보세요.

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21

1장. 함께하는 여정

치매대상자와의 신체적 관계가 더 이상 가능하지 않을 때에도, 서로의 친밀감을 유지하는 데 도움이 되는 몇 가지 방법이 있습니다.

도움말 관계를 유지하는 방법

• 적절한 신체 접촉을 활용하세요: 손을 잡아주세요. 따뜻함, 유대감, 안정감, 사랑을 전달할 수 있도록 부드러운 마사지를

해주세요.

• 음악을 활용하세요: 음악은 보편적인 언어입니다. 치매대상자가 좋아하고, 두 사람 모두 기분 좋게 만드는 음악을 함께

들어보세요.

• 유머 감각을 유지하세요: 유머는 좌절감과 긴장감을 줄여줍니다.

• 좋아하는 것과 원하는 것에 관해 이야기 나누세요: 시간이 지나면서 좋아하는 것도 바뀌기 때문에 자주 이야기를 나누는

것이 서로를 이해하는 데 도움이 됩니다.

자신을 돌보세요.

치매가 진행됨에 따라 돌봄자의 역할도 함께 변화하게 됩니다. 꼭 기억해야 할 중요한 것은 치매대상자를 돌보는 것과 동시에

돌봄자 자신도 잘 돌봐야 한다는 것입니다.

기억하기

• 휴식을 취해도 괜찮습니다.

• 도움을 요청해도 괜찮습니다.

• 가끔 좌절감을 느껴도 괜찮습니다.

• 돌보고 있는 사람이 더 이상 당신과 의미 있는 의사소통을 할 수 없다고 느껴질 때, 외로움을 느끼는 것은 자연스러운 감정입니다.

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1장. 함께하는 여정

지금까지의 내용을 정리해 봅시다.

• 돌봄의 여정에서 당신의 역할이 달라지더라도, 치매대상자와 유대감을 지속하는 것이 중요합니다.

• 당신의 역할이 부담되지 않도록, 즐거운 활동과 휴식을 계획합니다.

• 치매대상자를 돌보는 일은 때때로 힘들 수 있으므로, 필요한 경우 도움을 요청하는 것도 중요합니다.

• 미래를 잘 계획해야 합니다.

• 친밀감을 유지하고 유대감을 지속할 방법은 많습니다. 당신과 치매대상자에게 적절한 방법을 찾아보세요.

돌봄의 여정에서 긴장을 완화하는 방법에 대한 자세한 정보는

3부 1장 <일상생활의 스트레스 줄이기>를 참고하세요.

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1장. 함께하는 여정 (해답)

확인하기 1. 기억력 저하와 관련된 좌절감

남편은 아내 이정심 씨의 기억력 저하를 어떻게 대해야 할까요?

Ｘ 아내가 혼자 있을 때, 어떤 일이 일어나는지 지켜봅니다.

이 방법은 도움이 되지 않습니다. 치매가 있는 아내를 혼자 두고 무슨 일이 일어나는지 지켜보는 것은 남편인

돌봄자에게 오히려 좌절감을 줄 수 있습니다. 유대감을 유지하려면, 서로 느끼는 좌절감과 미래에 대한 걱정을 함께

이야기를 나누는 것이 중요합니다.

Ｘ 기억하기 위해 더 노력하라고 말합니다.

이 방법은 도움이 되지 않습니다. 기억력 저하는 치매 증상의 일부로, 대상자 스스로 변화시키기 어려운 문제입니다.

Ｘ 더 이상 쇼핑을 하지 못하도록 합니다.

이 방법은 도움이 되지 않습니다. 쇼핑은 아내에게 삶의 의미와 품위를 지키는 중요한 활동일 수 있습니다.

Ｏ 기억력 저하에 대해 어떻게 느끼는지 묻습니다.

이 방법은 도움이 될 수 있습니다. 기억력 저하로 인한 변화를 아내와 함께 이야기 나누며 유대감을 지속하는 방식으로

접근하기 때문입니다. 더불어 돌봄자 자신이 가지고 있는 기억력 저하에 대한 염려도 함께 나눌 수 있습니다.

Ｏ 비난하지 않고, 쇼핑 전에 함께 쇼핑 목록을 작성합니다.

이 방법은 도움이 될 수 있습니다. 아내가 가능한 오랫동안 쇼핑을 계속하고 독립심을 유지할 수 있도록 돕는 것이

중요하기 때문입니다.

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1장. 함께하는 여정 (해답)

확인하기 2. 상충하는 일정으로 인한 스트레스

며느리 강선율 씨는 이 상황에 어떻게 대처할 수 있을까요?

Ｘ 시어머니를 혼자 두고 상황을 지켜봅니다.

이 방법은 도움이 되지 않습니다. 혼자서는 시어머니가 안전하지 않을 수 있고 강 씨는 시어머니를 내버려두고 왔다는

스트레스 탓에 업무에 집중하기 어려울 것입니다.

Ｏ 근처에 사는 가족에게 요양보호사가 올 때까지 시어머니를 지켜봐 달라고 부탁합니다.

이 방법은 도움이 될 수 있습니다. 시어머니의 안전이 보장되고 강선율 씨도 자신의 일을 할 수 있고, 돌봄에서도 잠시

벗어날 기회가 될 수 있습니다.

Ｘ 시어머니에게 혼자서 잘 있어 달라고 부탁합니다.

이 방법은 도움이 되지 않습니다. 치매대상자는 일상생활에서 타인의 도움이 필요하며, 이런 부분은 대상자의

노력만으로 쉽게 바뀌지 않습니다.

Ｏ 남편에게 출근을 늦추고 요양보호사가 올 때까지 시어머니와 함께 있어 달라고 부탁합니다.

이 방법은 도움이 될 수 있습니다. 가족을 돌봄에 참여시킴으로써 강선율 씨가 잠시 돌봄에서 벗어나 자신의 시간을

가질 수 있기 때문입니다.

Ｏ 요양보호사에게 가능하면 조금 더 일찍 와 달라고 요청합니다.

이 방법은 도움이 될 수 있지만, 갑작스러운 요청이라 불가능할 수 있습니다.

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25

1장. 함께하는 여정

이번 과정을 마쳤습니다!

잘하셨습니다!

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26

2장. 의사소통 증진하기

왜 중요한가요? 치매는 종종 의사소통을 어렵게 만듭니다.

따라서 치매대상자와 효과적으로 의사소통하는 방법을 배우는 것은 매우 중요합니다.

어떤 도움이 되나요? 일상에서 쉽고 직접적인 방식으로 대화하고, 공감을 자연스럽게 표현할 수 있도록 도와줍니다.

배우게 될 내용은

무엇인가요?

1. 의사소통을 어떻게 개선할 수 있을까요?

2. 청력과 시력을 어떻게 확인할 수 있을까요?

3. 존중하는 태도를 유지하면서 어떻게 관심을 끌 수 있을까요?

4. 쉽게 의사소통하는 방법은 무엇일까요?

5. 상대방을 진지하게 대하는 방법은 무엇일까요?

6. 상대방의 반응에 어떻게 주의를 기울일 수 있을까요?

7. 상대방을 칭찬하는 방법은 어떤 것이 있을까요?

8. 공감은 어떻게 표현할 수 있을까요?

2장. 의사소통 증진하기

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27

2장. 의사소통 증진하기

1. 의사소통을 어떻게 개선할 수 있을까요?

치매는 의사소통을 어렵게 만들 수 있으며, 이는 당신과 치매대상자의 관계에 영향을 줄 수 있습니다. 의사소통이 원활하지 않으면,

돌봄자와 돌봄을 받는 사람 모두 좌절감, 우울감, 분노를 경험할 수 있습니다. 치매대상자와 대화하거나 손을 잡는 등 신체적

접촉을 할 때에는 당신의 행동을 상대방이 이해하는지, 당신 역시 상대방을 이해하고 있는지를 확인하는 것이 중요합니다.

상대의 말을 경청하고, 존중과 격식을 갖추어 진지하게 대하며, 관심, 따뜻한 미소와 포옹을 통해 표현할 수 있습니다. 이러한

태도는 치매가 있는 사람뿐만 아니라 모든 사람과의 관계에서도 매우 중요합니다. 이 장에서는 공감을 표현하는 방법과

의사소통에서 중요한 기본 원칙들을 소개합니다.

확인하기 1. 자신이 치매가 있는 사람이라고 상상해 보세요

만약 여러분이 치매가 있는 사람이라면, 다른 사람들이 여러분을 어떻게 대해 주기를 원하나요?

적절하다고 생각하는 항목에 모두 표시해 보세요.

□ 내 기분이 어떤지 귀 기울여줍니다.

□ 내가 없는 자리에서 내 이야기를 합니다.

□ 나에게 웃어줍니다.

□ 나를 신경 쓰지 않는다고 말합니다.

□ 나를 사랑한다고 말해줍니다.

□ 나를 어린아이처럼 대합니다.

□ 나를 존중해 줍니다. 정답확인

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28

2장. 의사소통 증진하기

2. 청력과 시력을 어떻게 확인할 수 있을까요?

모든 의사소통, 예를 들어 말하기, 신체 접촉, 몸짓 등에는 기본적인 시력과 청력이 중요하게 작용합니다.

그러나 치매로 인해 보고 듣는 능력이 영향을 받을 수 있습니다.

따라서 환경을 조정하거나 필요한 건강검진을 통해 시력과 청력을 개선할 수 있는 방법을 확인하는 것이 중요합니다.

1. 활동하기 시력 향상을 위한 활동

시력은 의사소통에 중요합니다. 시력 향상에 도움이 되는 방법을 아래에서 확인해 보세요.

빛이 충분한가요? □ 예

□ 아니오

• 치매대상자는 선명하게 보기 위해 더 많은 빛이 필요합니다. 따라서 조명을 밝게 하고,

가능하면 자연광을 활용하는 것이 좋습니다.

• 밤에 화장실을 쉽게 찾을 수 있도록 약한 조명을 켜두는 것도 도움이 됩니다.

색을 잘 구분할 수

있나요?

□ 예

□ 아니오

• 치매는 색의 대비를 인식하는 능력을 떨어뜨릴 수 있습니다. 예를 들어, 하얀 테이블 위에

하얀 접시가 놓여 있으면 접시를 구분하는 것이 어려울 수 있습니다. 이런 경우, 색이

뚜렷한 접시나 식탁보를 사용하는 것이 도움이 됩니다.

치매대상자가 안경을

쓰고 있나요?

□ 예

□ 아니오

• 치매대상자가 안경을 잃어버리거나 잘못 둘 수 있습니다. 이럴 때에는, 안경을 항상 같은

자리에 두도록 격려하는 것이 안경을 찾는 데 도움이 될 수 있습니다.

• 또한 안경에 목걸이용 끈을 연결해 사용하는 방법도 도움이 됩니다.

안경 상태는 괜찮나요? □ 예

□ 아니오

• 치매대상자가 안경을 착용하고 있다면 안경이 깨끗한지, 착용 시 불편함은 없는지 확인해

보세요. 특히, 귀와 코 주위가 편안한지 점검하는 것도 중요합니다.

의료진과 상담이

필요한가요?

□ 예

□ 아니오

• 치매대상자가 안경을 착용하지 않는데 잘 보지 못한다면, 시력 문제를 확인하기 위해

의료진과 상담 하는 것이 필요합니다.

• 또한 안경을 착용한 경우에도 현재 시력에 맞는지 확인하기 위해 정기적인 검진이 필요합니다.

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2. 활동하기 청력 향상을 위한 활동

청력은 의사소통에 중요합니다. 청력 향상에 도움이 되는 방법을 아래에서 확인해 보세요.

소음이 심한가요? □ 예

□ 아니오

• 주변 소음을 최소화하는 것은 치매대상자의 청력에 도움이 됩니다.

• 가능하면 치매대상자를 방해 요소가 적은 조용한 장소로 안내하고, 의사소통

할 때에는 텔레비전이나 라디오를 끄는 것이 좋습니다.

보청기를 착용하고 있나요? □ 예

□ 아니오

• 보청기 착용을 잊어버릴 수 있으며 제대로 착용하지 못해 도움을 요청하는

경우도 있을 수 있습니다.

보청기의 상태가 괜찮나요? □ 예

□ 아니오

• 보청기를 착용하고 있다면 보청기가 깨끗한지, 귀에 잘 맞는지, 착용감은

편안한지, 그리고 배터리가 충분히 충전되어 있는지 확인해 주세요.

의료진과 상담이 필요한가요? □ 예

□ 아니오

• 보청기를 착용하고 있다면, 적절하게 작동하는지 확인하고 필요시 의료진과

상담하세요.

• 보청기를 착용하지 않았는데 청력이 좋지 않다면, 청력검사를 포함한 상담을

위해 의료진을 방문할 필요가 있습니다.

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3. 존중하는 태도를 유지하면서 어떻게 관심을 끌 수 있을까요?

치매대상자는 질병의 정도나 의사소통의 어려움과 관계없이, 감정을 가진 소중한 한 사람입니다.

따라서 의사소통의 가장 중요한 첫 단계는 대상자의 관심을 이끌고, 그와 진심으로 소통하려는 태도를 갖는 것입니다.

기억하기

• 관심을 이끄는 것은 효과적인 의사소통을 위한 중요한 첫 단계입니다.

• 치매대상자에게 존중을 나타내며 관심을 유도하는 다양한 방법이 있습니다.

확인하기 2. 존중하는 태도로 관심을 끌어내세요

치매대상자의 관심을 끌어내는 방법에는 어떤 것이 있을까요?

적절하다고 생각하는 항목에 모두 표시해 보세요.

□ 목소리를 높이거나 소리를 지릅니다.

□ 얼굴을 마주 보고 눈높이를 맞춘 후, 편안한 목소리로 천천히 분명하게 이야기합니다.

□ 손, 팔, 또는 어깨를 가볍게 두드립니다.

□ 말을 듣게 하려고 멈춰 세우고 붙잡습니다.

□ 뒤에서 다가가 어깨를 만집니다.

□ 상대방이 인식할 수 있는 이름으로 부릅니다. 정답확인

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4. 쉽게 의사소통하는 방법은 무엇일까요?

우리가 평상시 사용하는 언어가 치매대상자에게는 너무 복잡할 수 있습니다.

간단하고 쉬운 말을 사용하면 대상자가 당신의 말을 더 잘 이해할 수 있습니다.

기억하기

• 한 번에 한 가지씩 질문하거나 이야기합니다.

• 짧고 간단하게 말합니다. 긴 문장이나 복잡한 문장은 피합니다. 한 가지 주제에 집중합니다.

• 필요하면, ‘예’나 ‘아니오’로 대답할 수 있는 질문으로 바꿉니다.

• 텔레비전이나 라디오같이 주변에 방해되는 소음이 없도록 합니다.

확인하기 3. 이해하기 쉽게 말하세요

아들 고온결 씨는 치매 진단을 받은 아버지를 돌보고 있습니다. 최근 그는 아버지가 자신의 말을 잘 알아듣지 못한다는 사실을

깨달았습니다. 아버지는 아들의 말을 왜 잘 알아듣지 못할까요?

아래 목록에서 아들과 아버지의 의사소통에 방해가 될 수 있는 것에 모두 표시해 보세요.

□ 라디오가 켜져 있습니다.

□ 이야기 도중 걸려 온 전화를 받습니다.

□ 여러 가지 질문을 동시에 합니다. 정답확인

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5. 상대방을 진지하게 대하는 방법은 무엇일까요?

어느 순간, 당신이 돌보는 사람의 말이 잘 이해되지 않을 수 있습니다.

치매대상자가 하는 말이 이상하거나 어색하게 들릴 수 있습니다.

하지만 그럴 때 일수록 그 사람을 진심으로 존중하고 진지하게 대해주세요.

치매로 인해 의사소통 능력이 떨어졌을 수 있지만, 그들이 여전히 당신과 소통하려 애쓰고 있다는 사실을 잊지 마세요.

당신이 돌보는 사람을

진지하게 대하는 것이 중요합니다.

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사례를 살펴봅시다.

아들 조무결 씨는 치매가 있는 아버지댁을 방문했습니다. 아버지는 아침에 있었던 일을 아들에게 설명하려 했지만 적절한 단어를

찾지 못합니다. 아들은 아버지가 듣고 있는 앞에서 “아버지가 무슨 말씀을 하는지 도저히 모르겠어.”라고 아내에게 말합니다. 곁에

있던 며느리도 “나도 모르겠어. 꼭 어린아이같이 행동하셔!”라고 합니다.

확인하기 4. 상대방을 진지하게 대하세요

다음 중 적절한 아들의 행동은 무엇일까요?

적절하다고 생각하는 항목에 모두 표시해 보세요.

□ 아버지와 같은 방에 있을 때, 다른 사람과 아버지에 대한 이야기를 하지 않습니다.

□ 아버지에게 “말씀이 잘 이해되지 않아요.” 라고 말하거나 ‘예’ 또는 ‘아니오’로 답할 수 있는 질문을 합니다.

예를 들어 “오늘 아침에 산책 다녀오셨어요?”라고 질문합니다.

□ 인내심을 가지고 아버지의 대답을 기다립니다.

□ 아버지가 이런 뜻으로 말씀하신 건지 물어봅니다.

기억하기

• 치매대상자의 행동을 진지하게 받아들이고 존중과 예의를 갖추어 대하는 것이 중요합니다.

• 치매대상자가 있는 자리에서는 다른 사람들과 그에 대해 이야기를 나누지 않도록 주의합니다.

• 대상자가 적절한 말을 떠올릴 수 있도록 인내심을 가지고 충분한 시간을 줘야 합니다.

• 대상자의 말을 이해하기 어려울 때는, ‘예’ 또는 ‘아니오’로 대답할 수 있는 쉬운 질문을 하는 것이 도움이 될 수 있습니다.

정답확인

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6. 상대방의 반응에 어떻게 주의를 기울일 수 있을까요?

상대방의 말투와 표정을 통해 많은 것을 알 수 있습니다. 예를 들어, 상대방이 웃고 있다면 기분이 좋다는 것을 짐작할 수 있습니다.

이렇게 상대방의 반응을 잘 살피면 돌보고 있는 사람과 더 잘 소통할 수 있습니다.

확인하기 5. 상대방의 반응에 주의를 기울이세요

아래의 그림을 살펴보고 각 그림에 어울리는 감정에 표시해 보세요.

□ 기쁨

□ 화남

□ 슬픔

□ 두려움

□ 기쁨

□ 화남

□ 슬픔

□ 두려움

□ 기쁨

□ 화남

□ 슬픔

□ 두려움

□ 기쁨

□ 화남

□ 슬픔

□ 두려움

기억하기

• 표정과 몸짓은 사람의 감정을 이해하는데 도움이 됩니다. 예를 들어, 손을 꼼지락거리거나, 팔짱을 끼거나, 서성대는 몸짓은

그 사람이 긴장하고 있는지, 기분이 상했는지, 불안한지 등을 알려주는 신호가 될 수 있습니다.

• 따라서 치매대상자의 반응과 행동을 주의 깊게 살펴보는 것이 매우 중요합니다.

정답확인

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7. 상대방을 칭찬하는 방법은 어떤 것이 있을까요?

치매대상자를 칭찬하는 것은 매우 중요합니다. 일반적으로 누군가에게 잘한 점을 말해주는 것이 잘못한 점을 지적하는 것보다

훨씬 더 효과적입니다. 칭찬은 잘한 일에 대해 말해 주는 것부터, 멋져 보인다고 하는 것까지 매우 다양합니다. 상황에 따라, 여러

가지 방식으로 칭찬을 표현할 수 있습니다.

기억하기

• 돌보고 있는 사람에게 긍정적인 말을 건네면 기분이 좋아질 수 있습니다.

• 칭찬은 상황에 따라 다양한 방법으로 표현할 수 있습니다.

• 하지만, 부정적인 말은 상대방의 기분을 상하게 할 수 있습니다.

확인하기 6. 칭찬해 보세요

다음 문장 중에는 상대방을 칭찬하는 말도 있고, 그렇지 않은 말도 있습니다.

칭찬하는 말이라고 생각되는 문장에 모두 표시해 보세요.

□ 오늘 너무 예쁘시네요.

□ ~~~을 참 잘하시네요.

□ 뭐 하고 있는 거예요? 그만하세요!

□ 정말 도움이 되었어요. 고마워요.

□ 엉망으로 해 놓으셨네요.

□ 기억하지 못하는 것을 부끄러워해야 해요.

□ 곁에 있으니, 기분이 좋아요.

□ 나를 짜증 나게 만들어요.

□ 웃는 모습이 정말로 아름다워요. 정답확인

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3. 활동하기

당신이 돌보고 있는 사람의 장점을 떠올려 보세요. 그들에게 건넬 수 있는 칭찬의 말을 적어 보세요.

8. 공감은 어떻게 표현할 수 있을까요?

치매대상자가 같은 질문을 반복하거나 서로 이해하기 어려운 상황이 생기더라도, 공감하는

태도를 보이는 것이 중요합니다. 치매는 의사소통을 어렵게 만드는 질병이라는 사실을

기억해야 합니다.

예를 들어, 치매대상자는 방금 한 말을 잊어버릴 수 있습니다. 그런 상황에서도 돌봄자는

인내심을 가지고 치매대상자의 입장을 이해하려는 마음이 필요합니다.

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사례를 살펴봅시다.

오빠 김담헌 씨는 치매가 있는 여동생을 자주 방문합니다. 여동생의 남편은 6개월 전에 세상을 떠났습니다. 하지만, 오빠가 방문할

때마다 여동생은 남편이 어디 있는지 반복해서 묻습니다. 김씨는 여동생이 남편을 그리워하고 있으며, 남편이 세상을 떠난 사실을

잊었을 수 있다는 것을 알게 되었습니다. 하지만 이런 상황이 반복될 수록 여동생의 행동이 힘들게 느껴집니다. 그럴 때마다 김담헌

씨는 “오늘 하루 어땠어?” 같은 질문을 통해 여동생의 주의를 다른 데로 돌리려 하지만, 여동생은 여전히 남편이 어디 있는지를

반복해서 묻습니다.

확인하기 7. 공감을 표현하는 방법 (1)

위 사례에서 오빠 김담헌 씨의 반응은 적절했나요?

□ 예

□ 아니오

오늘, 오빠는 다른 방식을 시도합니다. 그는 여동생에게 “남편이 세상을 떠나서 정말 힘들었겠구나.”라고 말하며 따뜻하게

안아줍니다. 그리고 집에서 가져온 여동생의 남편 사진을 보여주며, 그에 대한 추억을 함께 나눕니다. 오빠는 여동생이 남편을

그리워하고 있다는 사실을 이해하고, 그 마음에 공감하며 여동생을 지지하려고 노력합니다.

확인하기 8. 공감을 표현하는 방법 (2)

위 사례에서 오빠 김담헌 씨의 반응은 적절했나요?

□ 예

□ 아니오

정답확인

정답확인

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지금까지의 내용을 정리해 봅시다.

다음과 같은 의사소통 기술을 살펴보았습니다.

• 의사소통을 개선하는 방법

• 청력과 시력을 확인하는 방법

• 존중하는 태도로 관심을 끌어내는 방법

• 쉽게 말하는 방법

• 상대방을 진지하게 대하는 방법

• 상대방의 반응에 주의를 기울이는 방법

• 상대방을 칭찬하는 방법

• 공감을 표현하는 방법

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2장. 의사소통 증진하기 (해답)

확인하기 1. 자신이 치매가 있는 사람이라고 상상해 보세요

만약 여러분이 치매가 있는 사람이라면, 다른 사람들이 여러분을 어떻게 대해 주기를 원하나요?

Ｏ 내 기분이 어떤지 귀 기울여줍니다.

Ｘ 내가 없는 자리에서 내 이야기를 합니다.

Ｏ 나에게 웃어줍니다.

Ｘ 나를 신경 쓰지 않는다고 말합니다.

Ｏ 나를 사랑한다고 말해줍니다.

Ｘ 나를 어린아이처럼 대합니다.

Ｏ 나를 존중해 줍니다.

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확인하기 2. 존중하는 태도로 관심을 끌어내세요

아래는 치매대상자의 관심을 끌어내는 몇 가지 방법입니다.

Ｘ 목소리를 높이거나 소리를 지릅니다.

이 방법은 도움이 되지 않습니다. 목소리를 높이는 것은 존중을 표현하는 방식이 아닙니다. 오히려 상대방을 우울하게

하거나, 좌절하게 하거나, 화나게 만들 수 있습니다.

Ｏ 얼굴을 마주 보고 눈높이를 맞춘 후, 편안한 목소리로 천천히 분명하게 이야기합니다.

이 방법은 도움이 될 수 있습니다. 이는 상대방을 존중하는 태도로 접근하는 적절한 방법입니다.

Ｏ 손, 팔, 또는 어깨를 가볍게 두드립니다.

이 방법은 도움이 될 수 있습니다. 가볍게 접촉하는 것은 부드럽게 주의를 끌 수 있는 좋은 방법입니다.

Ｘ 말을 듣게 하려고 멈춰 세우고 붙잡습니다.

이 방법은 도움이 되지 않습니다. 이런 행동은 상대방을 스트레스 받게 하거나 화나게 만들 수 있습니다.

Ｘ 뒤에서 다가가 어깨를 만집니다.

이 방법은 도움이 되지 않습니다. 상대방이 당신을 예상하지 못했거나 당신이 다가오는 소리를 듣지 못해 놀랄 수

있습니다.

Ｏ 상대방이 인식할 수 있는 이름으로 부릅니다.

이 방법은 도움이 될 수 있습니다. 이름이나 애칭을 부르면 주의를 끌고, 친근하게 다가가는데 도움이 됩니다.

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2장. 의사소통 증진하기 (해답)

확인하기 3. 이해하기 쉽게 말하세요

아들 고온결 씨는 치매 진단을 받은 아버지를 돌보고 있습니다.

최근 그는 아버지가 자신의 말을 잘 알아듣지 못한다는 사실을 깨달았습니다.

아버지는 아들의 말을 왜 잘 알아듣지 못할까요?

Ｏ 라디오가 켜져 있습니다.

라디오는 주의를 산만하게 할 수 있습니다.

특히 치매대상자는 집중하기 어려운 경우가 많으므로, 라디오소리는 다른 사람의 말을 더 이해하기 어렵게 만들 수

있습니다.

Ｏ 이야기 도중 걸려 온 전화를 받습니다.

이야기하는 도중 전화 통화는 치매대상자를 혼란스럽게 하거나 자신에게 관심이 부족하다고 느끼게 할 수 있습니다.

대상자와 함께 할 때는 한 가지 일에 집중하는 것이 중요합니다.

또한, 전화 통화를 마친 뒤에는 이야기를 원래 주제로 되돌리기 어려울 수 있습니다.

Ｏ 여러 가지 질문을 동시에 합니다.

한꺼번에 많은 질문을 하면 대상자가 내용을 이해하기 어렵습니다. 따라서 질문 하나를 마친 후 다음 질문을 해야

합니다.

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2장. 의사소통 증진하기 (해답)

확인하기 4. 상대방을 진지하게 대하세요

다음 중 적절한 아들의 행동은 무엇일까요?

Ｏ 아버지와 같은 방에 있을 때, 다른 사람과 아버지에 대한 이야기를 하지 않습니다.

돌보는 사람이 같은 방에 있을 때는, 그 사람에 대해 이야기하지 않는 것이 좋습니다.

Ｏ 아버지에게 “말씀이 잘 이해되지 않아요.” 라고 말하거나 ‘예’ 또는 ‘아니오’로 답할 수 있는 질문을 합니다.

예를 들어 “오늘 아침에 산책 다녀오셨어요?”라고 질문합니다.

상대방의 말을 이해하려고 노력하는 것이 그를 진지하게 대하는 자세입니다.

Ｏ 인내심을 가지고 아버지의 대답을 기다립니다.

치매대상자는 적절한 단어를 찾는 데 시간이 더 걸립니다.

돌봄자가 이들을 이해하기 위해서는 더 많은 시간과 인내심을 가지고 기다리는 자세가 필요합니다.

Ｏ 아버지가 이런 뜻으로 말씀하신 건지 물어봅니다.

치매대상자는 적절한 단어를 찾거나 말을 완성하기 위해 도움을 필요로 할 수 있습니다.

이럴 때는 조심스럽게 확인해 주는 것이 도움이 됩니다.

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2장. 의사소통 증진하기 (해답)

확인하기 5. 상대방의 반응에 주의를 기울이세요

아래의 그림을 살펴보고 각 그림에 어울리는 감정에 표시해 보세요.

■ 기쁨

□ 화남

□ 슬픔

□ 두려움

□ 기쁨

■ 화남

□ 슬픔

□ 두려움

□ 기쁨

□ 화남

□ 슬픔

■ 두려움

□ 기쁨

□ 화남

■ 슬픔

□ 두려움

확인하기 6. 칭찬해 보세요

다음 문장 중에는 상대방을 칭찬하는 말도 있고, 그렇지 않은 말도 있습니다.

칭찬하는 말이라고 생각되는 문장에 모두 표시해 보세요.

Ｏ 오늘 너무 예쁘시네요.

Ｏ ~~~을 참 잘하시네요.

Ｘ 뭐 하고 있는 거예요? 그만하세요!

Ｏ 정말 도움이 되었어요. 고마워요.

Ｘ 엉망으로 해 놓으셨네요.

Ｘ 기억하지 못하는 것을 부끄러워해야 해요.

Ｏ 곁에 있으니, 기분이 좋아요.

Ｘ 나를 짜증 나게 만들어요.

Ｏ 웃는 모습이 정말로 아름다워요.

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2장. 의사소통 증진하기 (해답)

확인하기 7. 공감을 표현하는 방법 (1)

위 사례에서 오빠 김담헌 씨의 반응은 적절했나요?

□ 예

■ 아니오

오빠는 여동생이 남편을 그리워하고 있으며, 그가 사망했다는 사실을 상기시키면 슬퍼할 것이라고 생각합니다.

그래서 여동생의 주의를 다른 곳으로 돌리려 했습니다. 오빠의 반응은 선한 의도에서 비롯된 것이지만,

여동생이 계속 질문하는데도 이를 무시하는 것은 올바른 대처 방법이 아닐 수 있습니다.

확인하기 8. 공감을 표현하는 방법 (2)

위 사례에서 오빠 김담헌 씨의 반응은 적절했나요?

■ 예

다양한 방법을 시도해서, 여동생의 아픔을 덜어 줄 수 있는 방법을 찾는 것이 중요합니다.

처음에는 여동생의 주의를 다른 곳으로 돌리려 했지만, 그 방법은 큰 효과가 없었습니다.

이후 그는 여동생에게 남편의 사진을 보여주며 대화를 이어가는 새로운 접근을 시도했습니다.

이와 같은 시도는 감정을 존중하면서 소통을 이어가는 점에서 적절한 방법이 될 수 있습니다.

□ 아니오

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2장. 의사소통 증진하기

이번 과정을 마쳤습니다!

잘하셨습니다!

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3장. 의사결정 지지하기

왜 중요한가요? 시간이 지날수록 사고력과 판단력이 저하되어, 치매대상자는 스스로 결정을 내리기 어려워질 수

있습니다.

따라서 가능한 빠른 시점에 의사결정을 진행하는 것이 중요합니다.

어떤 도움이 되나요? 치매대상자가 스스로 결정할 수 있는 시간을 충분히 갖도록 돕고, 그 사람에게 가장 좋은 결정을

내릴 수 있도록 돕는 방법을 알아봅니다.

배우게 될 내용은

무엇인가요?

1. 왜 의사결정에 대한 도움이 필요한가요?

2. 그 사람의 관점에서 최선의 결정을 내리는 방법은 무엇인가요?

3. 일상생활 속에서 치매대상자의 의사결정을 어떻게 도울 수

있나요?

4. 치매가 진행되면 일상생활속에서의 의사결정을 돕는 방법은

어떻게 달라져야 하나요?

5. 치매대상자가 복잡하고 중요한 의사결정을 할 때 어떻게 도울 수

있나요?

3장. 의사결정 지지하기

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3장. 의사결정 지지하기

1. 왜 의사결정에 대한 도움이 필요한가요?

치매대상자가 자신에 대한 의사결정을 스스로 내릴 수 있도록 돕는 것은 매우 중요합니다. 치매대상자도 다른 사람들과

마찬가지로, 자신의 삶과 행복에 영향을 미치는 모든 결정에 참여할 권리가 있습니다. 하지만 치매가 진행될수록 이러한 결정을

내리는 것이 점점 어려워질 수 있습니다. 이로 인해 가족들이 치매대상자를 대신해 결정을 내리게 되는 경우가 생기기도 합니다.

그렇다면 치매대상자가 결정을 내려야 할 때 어떻게 도움을 줄 수 있을지 알아보겠습니다.

2. 그 사람의 관점에서 최선의 결정을 내리는 방법은 무엇인가요?

누구나 크고 작은 결정을 내려야 합니다. 치매대상자가 자신이 원하는 것이 무엇인지 명확히 할 수 있도록 돕는 것이 중요합니다.

치매대상자의 선호, 필요, 희망에 맞는 결정을 내릴 수 있으면, 그들의 삶은 보다 독립적이 될 수 있습니다.

결정을 내리는 일은 쉽지 않을 수 있습니다. 치매대상자가 결정을 내리는 것이 왜 어려울까요? 아래의 이유들을 살펴보겠습니다.

기억력 저하

기억력이 저하되면,

결정을 내리는 데 필요한 정보를

잊어버릴 수 있습니다.

사고력 저하 및 자기 생각을

알아듣게 설명하기 어려움

어떤 문제를 생각해 보거나

자신이 생각한 것을 표현하는 데

어려움이 있으면, 결정을 내리거나

결정에 대한 의견을 나누는 일이

어려워질 수 있습니다.

복잡한 의사결정의 어려움

예를 들어, 혼자서 밖에 나가도

되는지를 판단하는것이 어렵다면,

복잡한 결정을 내리는 것은 더

어려울 수 있습니다. 이런 경우

적절한 도움이 필요합니다.

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3장. 의사결정 지지하기

1. 활동하기

다음의 상황을 한 번 생각해 보세요.

- 치매가 진행될수록 결정을 내리는 일이 더 어려워질 수 있습니다.

- 치매대상자가 자신에 관한 결정을 내릴 수 있도록 돕는 것이 중요합니다.

- 치매는 치매대상자들이 자신에 대한 의사결정을 내리는 데 어려움을 겪게 만듭니다.

당신이 돌보고 있는 사람이 결정을 내릴 수 있도록 돕고 있나요?

이전에 결정을 도왔던 사례와, 이러한 결정을 내리는 과정에서 당신이 어떤 도움을 줄 수 있는지 자유롭게 적어보세요.

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3장. 의사결정 지지하기

3. 일상생활 속에서 치매대상자의 의사결정을 어떻게 도울 수 있나요?

치매대상자가 스스로 할 수 있는 일을 계속하도록 격려하는 것이 중요합니다.

결정을 지지하는 것은 치매대상자를 보다 독립적으로 만들고, 이는 그 사람의 자존감을 높이는 데에도 도움이 됩니다.

사례를 살펴봅시다.

박선결 씨는 알츠하이머병을 진단받았으며, 아내와 함께 살고 있습니다.

박선결 씨는 원래 전날 저녁이면 다음 날 입을 옷을 미리 준비해두곤 했습니다. 하지만 치매가 진행되면서, 이 습관을 잊어버리고

매일 같은 옷을 입는 경우가 많아졌습니다.

확인하기 1. 일상적인 의사결정을 위한 도움

남편이 스스로 깨끗한 옷을 선택해 입을 수 있도록 돕는 최선의 방법은 무엇일까요?

적절하다고 생각하는 항목에 모두 표시해 보세요.

□ 남편이 잠자리에 들기 전, 다음 날 무슨 옷을 입을지 물어보고, 직접 옷을 꺼내어 놓도록 합니다.

□ 아내가 옷을 고른 후 , 남편에게 그 옷을 꺼내어 놓으라고 합니다.

□ 아내가 다음 날 아침에 남편의 옷을 고르고, 바로 건네줍니다.

기억하기

• 치매대상자가 스스로 할 수 있는 일을 계속하도록 격려합니다.

• 치매대상자의 결정을 지원하는 것은 그들을 더욱 독립적으로 만듭니다.

• 스스로 결정을 내릴 수 있도록 돕는 것은 치매대상자의 자존감을 높여주는 일이기도 합니다.

정답확인

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3장. 의사결정 지지하기

4. 치매가 진행되면 일상생활속에서의 의사결정을 돕는 방법은 어떻게 달라져야 하나요?

사례를 살펴봅시다.

치매가 더 진행되자 남편은 아내와 함께 다음날 입을 옷을 고를 때 스트레스를 느끼기 시작했습니다. 그는 다음 날 해야 할 일들을

걱정하며 불안해했고, 이로 인해 아내는 남편이 스스로 결정을 내리도록 돕는 일이 점점 더 어려워졌습니다.

확인하기 2. 치매의 진행 상태에 따라 의사결정 돕기

아내는 어떻게 대처해야 할까요?

적절하다고 생각하는 항목에 모두 표시해 보세요.

□ 전날 저녁이 아니라, 다음 날 아침에 남편이 옷을 고르도록 합니다.

□ 아내가 전날 저녁에 남편이 입을 옷을 미리 꺼내 놓습니다.

□ 남편이 스스로 옷을 고를 수 있도록 단순한 선택지를 제공합니다.

예를 들어, 파란 바지를 입고 싶은지, 검은 바지를 입고 싶은지 물어봅니다.

기억하기

• 치매가 진행되더라도, 치매대상자가 스스로 선택하게 도울 수 있습니다.

• 선택의 폭을 제한하면, 결정을 단순하게 만들 수 있습니다.

• 당사자가 기분이 좋거나 마음이 편안할 때 함께 상의하는 것도 좋은 방법입니다.

정답확인

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5. 치매대상자가 복잡하고 중요한 의사결정을 할 때 어떻게 도울 수 있나요?

치매가 진행되면, 의학적 치료와 같은 복잡한 결정을 스스로 내리기 어려워 질 수 있습니다.

사례를 살펴봅시다.

김단휘 씨는 혈관성 치매를 진단받았으며, 딸이 돌보고 있습니다. 의사는 김단휘 씨에게 고혈압 약 복용을 권유했지만,

김단휘 씨는 약을 먹어야 하는 이유를 이해하지 못하고 “먹고 싶지 않다”고 말합니다.

확인하기 3. 복잡한 의사결정을 위한 지원 (1)

의사와 딸은 어떻게 대처해야 할까요?

적절하다고 생각하는 항목에 모두 표시해 보세요.

□ 어머니가 자신이 원하는 것을 말한 것이므로 혈압약을 먹을지 말지 결정하는 것을 도울 필요가 없습니다.

□ 의사는 혈압약을 무조건 먹어야만 한다고 말합니다.

□ 의사는 혈압약을 먹으면 치매로 인한 뇌의 추가 손상을 늦출 수 있기 때문에 어머니의 건강에 좋다고 설명합니다.

□ 딸은 “엄마, 엄마는 뭔가 자주 잊어버리고, 말할 때 정확한 단어를 찾기 어려워하시잖아요.

이 약을 먹으면 그런 문제들이 조금 나아질 수 있어요.”라고 말합니다. 정답확인

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다른 사례를 살펴봅시다.

이도결 씨는 치매대상자로, 아내와 함께 살고 있습니다. 남편의 치매 상태가 악화하자, 아내는 남편과 상의 없이 병원 진료를

예약하고, 남편의 건강 상태에 대해 의사와 상담한 결과 약 복용을 결정합니다.

아내는 남편의 여동생과도 이 문제를 상의하였고, 시누이는 오빠가 치매 진단을 받기 전이었다면 이 상황에서 어떤 결정을

내렸을지 아내에게 물어봅니다. 이후 아내는 의사와 다시 상담하면서, 남편이 지금의 상황을 모두 이해할 수 있다면 어떤 결정을

내렸을지 다시 한번 곰곰이 생각해 봅니다.

확인하기 4. 복잡한 의사결정을 위한 지원 (2)

아내가 남편이 더 이상 스스로 결정을 내릴 수 없다고 생각하는 이유는 무엇인가요?

적절하다고 생각하는 항목에 모두 표시해 보세요.

□ 남편은 결정을 내리는 데 필요한 정보를 이해하기 어렵습니다.

□ 남편이 의사의 말에 동의하지 않기 때문입니다.

□ 남편은 말하거나, 몸짓 언어를 사용하거나, 그 외 다른 방법으로 자신의 결정을 전달하는 것이 어렵습니다.

□ 남편은 주어진 정보를 자신의 의사결정에 활용하거나 따져 보기 어렵습니다. 정답확인

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의사결정 능력은 다음과 같은 요인들에 의해 달라질 수 있습니다:

기억하기

• 적절한 도움을 받으면, 치매대상자도 의학적 판단과 같은 복잡한 결정을 내릴 수 있는 경우도 있습니다.

• 복잡한 의사결정을 지원하기 위해서는 치매대상자가 의사결정의 결과를 이해할 수 있도록, 올바른 정보를 제공하는 것이

중요합니다.

결정해야 하는 주제에 따라

의사결정 능력이

달라질 수 있습니다.

입을 옷을 선택하는 건

가능하지만, 약 복용과 같은

복잡한 결정은 어려울 수

있습니다.

시간이 지나면

상황이 변할 수 있습니다.

심각한 감염으로 인해 혼돈

상태가 심해지면 결정이

어렵지만, 감염이 치료된 후에는

해당 문제에 대해 결정할 수

있습니다.

치매대상자의 의사결정 능력을

평가하는 일이 쉽지 않습니다.

치매대상자의 의사결정 능력이

명확하지 않은 때도 있습니다.

이런 경우에는 대상자가 최선의

결정을 내릴 수 있도록 최대한

돕는 것이 최선일 수 있습니다.

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기억하기

다음과 같은 사항을 고려하여 치매대상자가 최선의 결정을 내릴 수 있도록 도울 수 있습니다.

• 과거와 현재의 희망 사항과 감정, 특히 치매진단 이전에 작성된 진술을 존중해야 합니다.

• 치매를 앓기 전, 대상자의 결정에 영향을 미쳤던 신념과 가치관을 고려해야 합니다.

• 자신과 관련된 의사결정을 도와줄 사람으로 대상자가 선택한 사람들의 의견도 고려해야 합니다.

• 대상자의 최선의 이익이 다른 가족들의 최선의 이익과 항상 일치하는 것은 아닙니다.

결국 대상자와 관련된 결정이므로, 가장 중요한 것은 대상자에게 최선인가 하는 것입니다.

• 과거의 희망 사항이 현재의 희망 사항과 다를 수 있다는 점을 고려해야 합니다.

결정을 위한 준비

치매대상자를 위한 결정에 대비하려면 다음과 같은 준비가 중요합니다:

• 질병 초기 단계에, 가능한 한 빨리 대상자의 의견을 알아내어 결정을 내릴 수 있도록 준비합니다.

• 가족, 친구, 의료진, 가까운 사람들과 중요한 결정에 관해 이야기를 나누어, 의사결정에 대한 도움을 받습니다.

• 치료 방향에 관한 치매대상자의 의견을 반영하고, 대상자의 의견과 결정을 의료진과 공유합니다.

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2. 활동하기

치매대상자의 희망 사항을 정확하게 반영한 목록을 준비하기 위해서, 다음과 같은 사항을 고려해 보세요.

만약 치매대상자가 더 이상 집에서 지낼 수 없다면, 어디에서 지내기를 원하나요?

가정, 지역사회 또는 시설에서 돌봄을 받게 된다면 어떤 점을 중요하게 생각하나요?

더 이상 스스로 재정을 관리할 능력이 없다면, 누구에게 재정 관리를 맡기고 싶은가요?

생의 마지막을 맞이할 때, 어떻게 돌봄을 받기를 바라나요?

받고 싶거나, 혹은 거부하는 의학적 치료가 있나요?

더 이상 음식을 먹을 수 없을 때, 어떻게 하길 원하나요? 영양관을 통해 영양을 공급받기를 원하나요?

치료와 관련해 특별히 걱정되거나 두려운 점이 있나요?

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확인하기 1. 일상적인 의사결정을 위한 도움

남편이 스스로 깨끗한 옷을 선택해 입을 수 있도록 돕는 최선의 방법은 무엇일까요?

Ｏ 남편이 잠자리에 들기 전, 다음 날 무슨 옷을 입을지 물어보고, 직접 옷을 꺼내어 놓도록 합니다.

이 방법은 좋은 방법입니다. 남편에게 여전히 스스로 옷을 준비할 수 있다고 격려하는 방법입니다.

Ｏ 아내가 옷을 고른 후 , 남편에게 그 옷을 꺼내어 놓으라고 합니다.

이 방법은 좋은 선택이 될 수 있습니다. 남편이 직접 옷을 꺼내 놓도록 격려하는 것은 좋습니다.

하지만 무엇을 입을지 스스로 결정하게 하는 것이 더욱 도움이 됩니다.

Ｘ 아내가 다음 날 아침에 남편의 옷을 고르고, 바로 건네줍니다.

이 방법은 좋은 방법이 아닙니다. 아내는 남편이 스스로 결정할 수 있는 기회를 빼앗고 있습니다.

그보다는 아내가 남편이 스스로 결정할 수 있도록 도와주고, 아직 할 수 있는 일들, 예를 들어 옷을 직접 꺼내 놓는 것을

계속 하도록 격려하는 것이 더 좋습니다.

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확인하기 2. 치매의 진행 상태에 따라 의사결정 돕기

아내는 어떻게 대처해야 할까요?

Ｏ 전날 저녁이 아니라, 다음 날 아침에 남편이 옷을 고르도록 합니다.

이 방법은 도움이 될 수 있습니다. 아내는 남편이 무엇을 입고 싶은지 스스로 결정할 수 있도록 계속 도와주면서, 전날

저녁에 옷 입는 것을 걱정하지 않게 도와주는 방법입니다.

Ｘ 아내가 전날 저녁에 남편이 입을 옷을 미리 꺼내 놓습니다.

이 방법은 도움이 되지 않습니다. 남편이 아직 스스로 결정을 내릴 수 있음에도 불구하고 아내가 남편 대신 결정하고

있기 때문입니다.

Ｘ 남편이 스스로 옷을 고를 수 있도록 단순한 선택지를 제공합니다.

예를 들어, 파란 바지를 입고 싶은지, 검은 바지를 입고 싶은지 물어봅니다.

어떤 경우에는 이 방법도 좋은 선택이 될 수 있습니다. 아내가 다음날 남편이 입을 바지를 고르더라도,

남편이 최종 결정은 스스로 내릴 수 있습니다. 그러나 이 경우 다음날에 대한 남편의 걱정을 해결하지 못하기 때문에

최선의 방법이 아닐 수 있습니다.

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확인하기 3. 복잡한 의사결정을 위한 지원 (1)

의사와 딸은 어떻게 대처해야 할까요?

Ｘ 어머니가 자신이 원하는 것을 말한 것이므로 혈압약을 먹을지 말지 결정하는 것을 도울 필요가 없습니다.

이 방법은 도움이 되지 않습니다. 어머니는 치매를 가지고 있으므로 약을 먹어야 하는 이유와 복용 여부에 따른 결과를

충분히 이해하지 못하고 있을 수 있습니다. 따라서 정보를 제공하는 등 결정을 도와드리는 것이 필요합니다.

Ｘ 의사는 혈압약을 무조건 먹어야만 한다고 말합니다.

이 방법은 도움이 되지 않습니다. 약이 어머니의 건강에 도움이 되는 것은 사실이지만, 의사가 일방적으로 지시하는

것은 어머니의 이해와 협조를 얻는데 도움이 되지 않습니다.

Ｏ 의사는 혈압약을 먹으면 치매로 인한 뇌의 추가 손상을 늦출 수 있기 때문에 어머니의 건강에 좋다고 설명합니다.

이 방법은 도움이 될 수 있습니다. 의사의 설명은 약 복용의 중요성을 이해할 수 있게 해주는 것은 물론, 이러한 정보를

바탕으로 결정을 내릴 수 있게 도와줍니다.

Ｏ 딸은 “엄마, 엄마는 뭔가 자주 잊어버리고, 말할 때 정확한 단어를 찾기 어려워하시잖아요.

이 약을 먹으면 그런 문제들이 조금 나아질 수 있어요.”라고 말합니다.

이 방법은 도움이 될 수 있습니다. 약을 먹어야 하는 이유를 다른 방식으로 구체적으로 설명하는 것은 약 복용이 이로운

이유를 어머니에게 이해시킬 수 있는 방법이 될 수 있습니다.

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확인하기 4. 복잡한 의사결정을 위한 지원 (2)

아내가 남편이 더 이상 스스로 결정을 내릴 수 없다고 생각하는 이유는 무엇인가요?

Ｏ 남편은 결정을 내리는 데 필요한 정보를 이해하기 어렵습니다.

Ｘ 남편이 의사의 말에 동의하지 않기 때문입니다.

Ｏ 남편은 말하거나, 몸짓 언어를 사용하거나, 그 외 다른 방법으로 자신의 결정을 전달하는 것이 어렵습니다.

Ｏ 남편은 주어진 정보를 자신의 의사결정에 활용하거나 따져 보기 어렵습니다.

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이번 과정을 마쳤습니다!

잘하셨습니다!

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4장. 주변의 도움 활용하기

왜 중요한가요? 다른 사람들과 돌봄의 책임을 나누는 것은, 장기적으로 지속가능한 돌봄을 제공하는 데 도움이 됩니다.

어떤 도움이 되나요? ‘도움을 요청하는 기술’을 연습하고 익힐 수 있습니다.

배우게 될 내용은

무엇인가요?

1. 가족과 친구를 돌봄에 참여시키는 것이 왜 중요할까요?

2. 필요한 도움과 지원에는 어떤 것들이 있을까요?

3. 효과적으로 도움을 요청하는 방법은 무엇일까요?

1. 가족과 친구를 돌봄에 참여시키는 것이 왜 중요할까요?

치매대상자의 돌봄에 다른 사람을 참여시키는 것은 쉽지 않을 수 있습니다. 다른 사람들이 당신만큼 잘 돌보지 못할 것 같거나,

시간이 없을 것이라 생각하거나, 도움을 요청했을 때 거절할 것 같다는 생각이 들 수 있습니다.

하지만, 시간이 지날수록 치매대상자는 일상적인 활동에서도 점점 더 많은 도움이 필요하게 됩니다.

따라서 돌보는 일을 분담할 수 있도록 다른 사람을 참여시키는 것이 중요합니다.

또한, 당신의 상황과 감정을 이해하는 사람과 이야기를 나누는 것도 도움이 될 수 있습니다.

무엇보다 초기 단계부터 도움을 받는 것이 중요합니다. 초기부터 도움을 받으면 장기적으로 돌보는 데 큰 도움이 됩니다.

4장. 주변의 도움 활용하기

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2. 필요한 도움과 지원에는 어떤 것이 있을까요?

사례를 살펴봅시다.

• 김한결 씨는 치매가 있는 어머니를 돌보고 있습니다. 그러나 다른 사람들의 도움 없이 대부분의 시간을 어머니를 돌보는 데 쓰고

있습니다. 이로 인해 심하게 지쳐 있으며, 이제는 다른 사람들의 도움을 받고 싶어 합니다.

• 이서온 씨는 치매가 있는 아내를 돌보고 있습니다. 그는 아내의 두 여동생에게 도움을 요청했고, 여동생들은 정기적으로 아내를

쇼핑에 데려가거나 집 청소를 도와주고 있습니다.

• 박민람 씨는 치매가 있는 남편을 돌보며 가족, 친구, 지인들의 도움을 받고 있습니다. 장보기나 집 청소를 도와주거나, 남편과

함께 산책을 해줍니다. 또한 남편의 기억력 저하로 인해 박민람 씨가 겪는 어려움을 들어주고 공감해 줍니다.

박민람 씨가 남편을 돌보면서 받는 도움과 지원의 종류는 다음과 같습니다.

실질적인 도움

- 가족: 한 달에 한 번 집 청소를 도와줍니다.

- 친구: 일주일에 한 번 장보기와 요리를 도와주러 옵니다.

여가 시간을 위한 도움

- 가족: 정기적으로 남편과 함께 산책하러 나갑니다.

정서적 도움

- 친구: 그녀가 필요할 때마다 항상 곁에서 이야기를 들어줍니다.

정보 제공

- 지인: 치매에 대한 정보를 찾는 것을 도와줍니다.

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1. 활동하기

당신은 어떤 종류의 도움을 받고 있나요?

빈칸에 당신이 받고 있는 도움의 종류를 적어보세요. 아래에 나열된 항목 외에 다른 도움도 받고 있다면, ‘기타’란에 적어주세요.

가족, 친구 또는 다른 사람이 제공하는 도움:

실질적인 도움을 받은 적이 있나요? (청소, 요리 등)

정서적인 도움을 받은 적이 있나요? (대화 등)

여가 시간을 보내기 위해 도움을 받은 적이 있나요? (산책, 소일거리 등)

주변 사람들로부터 정보를 제공받은 적이 있나요?

기타: 그 외 다른 도움을 받은 적이 있나요?

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기억하기

• 돌봄을 적절히 나누는 것은 자연스러운 일입니다.

• 이를 통해 자신이 좋아하는 일을 할 시간을 갖거나, 쇼핑을 하러 외출하거나, 충분한 휴식을 취할 수 있습니다.

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2. 활동하기

돌봄자 자신의 도움지원망을 만들어 보세요.

지금까지 도움을 받을 수 있는 다양한 지원망에 대해 살펴보았습니다.

아래 항목 중 당신이 도움을 받았다고 생각되는 부분에 모두 표시해 보세요.

□ 한 가지 정도 도움을 받고 있습니다.

이미 다른 사람들의 도움을 받고 있다면 그것만으로도 매우 바람직한 일입니다. 하지만 경우에 따라 다른 도움도 필요할

수 있습니다. 도움을 줄 수 있는 사람이 누가 있을지 한 번 생각해 보세요.

□ 여러 가지 도움을 받고 있습니다.

이미 주변 사람들이 앞서 살펴본 돌봄에 참여하고 있다면 정말 바람직한 상황입니다. 필요하다면 다른 사람들에게 더

도움을 요청할 수 있다는 것을 기억하세요. 소개된 사례들을 통해, 이전에 미처 생각하지 못했던 도움을 줄 수 있는

사람들을 새롭게 떠올릴 수도 있습니다.

□ 아직 도움을 받고 있지 않습니다.

누군가를 돌보는 일은 결코 쉽지 않다는 것을 잊지 마세요. 돌봄을 혼자 감당하지 말고, 어떻게 다른 사람들과 나눌 수

있을지 고민해 보세요. 도움을 요청하지 않으면, 다른 사람들이 도와주고 싶어 하는지조차 알 수 없습니다. 가족이 멀리

있거나, 시골이나 외딴 지역에 거주하거나, 도움을 거절한다면 종교단체, 의료진, 또는 국가나 지역의 치매 관련 기관을

고려해 볼 수 있습니다.

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어떤 도움을 더 받기 원하나요?

누군가에게 도움을 요청하기 전에, 자신에게 어떤 도움이 필요한지 명확하게 아는 것이 중요합니다.

자신이 필요로 하는 도움 희망 목록을 미리 만들어 두는 것이 좋습니다.

사례를 살펴봅시다.

김한결 씨

저는 저녁시간에 취미활동이나 운동을 할 수 있는 시간을

갖고 싶어, 집 청소를 도와줄 사람이 필요합니다.

이서온 씨

제 감정을 솔직하게 이야기할 수 있는 사람이

있었으면 좋겠습니다.

박민람 씨

저는 제 경험을 나누고 조언을 주고 받을 수 있는

다른 돌봄자들과 교류하고 싶습니다.

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당신의 도움 희망 목록은 무엇인가요?

필요한 도움이나 지원에 대한 희망 목록을 만들어 보세요. 희망 목록의 예시는 다음과 같습니다:

• 치매대상자를 목욕시킬 때 도움을 받고 싶습니다.

• 치매대상자를 어떻게 돌봐야 할지 조언을 듣고 싶습니다.

• 치매대상자의 돌봄 요구에 맞게 집을 개조하고 싶습니다.

실현 가능한 희망 사항을 작성해 보세요.

만약 현재 상황에서 실현되기 어려울 것 같다면, 실현 가능한 도움으로 바꾸어 작성하는 것이 좋습니다.

예를 들어, 김조현 씨는 매주 집 청소를 도와줄 사람을 고용하고 싶습니다. 하지만 비용을 감당할 수 없으므로 현실적이지 않다는

것을 깨닫게 되었습니다. 이럴 경우, 2주에 한 번 집 청소를 도와줄 사람을 고용하거나, 비용을 받지 않는 친구나 친척에게 도움을

요청해 볼 수 있습니다. 또한 집 전체가 아닌, 바닥 청소처럼 어려운 일만 특정해서 도와달라고 요청할 수도 있습니다.

3. 활동하기

실현 가능한 희망 사항 목록을 작성합니다.

희망사항 1 :

희망사항 2 :

희망사항 3 :

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누구한테 도움을 청할 수 있나요?

이제 누구에게 도움을 요청할 수 있을지 생각해 봅니다.

어떤 사람에게는 도움을 요청하는 것이 어렵지 않을 수 있고, 또 어떤 사람은 도움을 요청하는 것이 익숙치 않을 수 있지만 한번

시도는 해볼 수 있습니다. 다음은 효과적으로 도움을 요청하는 방법입니다.

중요한 것은 내가 어떤 도움을 희망하는지 항상 기억하고 있는 것입니다.

3. 효과적으로 도움을 요청하는 방법은 무엇일까요?

다른 사람에게 도움을 요청하고 싶다면, 효과적인 방법으로 요청하는 것이 중요합니다.

여기서 효과적인 방법이란, 자신의 생각, 감정, 경험을 솔직하게 이야기 하는 것을 의미합니다.

즉, 스스로 도움을 요청하는 것에 주저하지 않고 당당해지는 것이 필요합니다.

효과적으로 도움을 요청하는 방법은 다음과 같습니다:

• 내가 원하는 것, 필요한 것이 무엇인지, 현재 상황에 대한 자신의 감정이 어떤지 생각해 봅니다.

• 자신의 문제를 한두 문장으로 간결하게 설명합니다.

• 자신의 생각과 감정을 명확하게 표현함으로써 상대방이 당신의 처지를 잘 이해하도록 합니다.

• 솔직하게 직설적으로 이야기합니다.

• 상대방의 기분을 고려합니다.

• 어떤 도움이 필요한지 구체적으로 설명합니다.

• 융통성을 발휘합니다. 원하는 도움을 다 받지 못하더라도, 필요한 도움은 어느정도 받을 수 있습니다.

• 요청을 작은 단위로 나누는 것이 중요합니다. 일반적으로 사람들은 큰 요청보다 작은 요청에 더 쉽게 응답하는 경향이 있습니다.

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효과적으로 도움을 요청하는 방법은 그 외에도 다양하게 있습니다:

• 더 이상 무엇을 요청해야 할지 모르겠다면, 잠시 멈춰 휴식을 취합니다. 나중에 다시 이야기해보는 것도 좋은 방법입니다.

예를 들어, 생각을 정리한 후 내일 오후에 다시 이야기하자고 제안할 수 있습니다.

• 적절하다고 판단되면, 먼저 함께 해보자고 제안합니다.

• 도움을 요청하는 일을 포기하지 않습니다. 여러 번 요청해야 할 수도 있습니다.

• 도움을 요청한다고 해서 늘 원하는 결과로 이어지지는 않지만, 중요한 점은 도움을 요청할 수 있다는 자신감을 가지는

것입니다.

사례를 살펴봅시다.

김유견 씨는 일주일에 한 번 혼자만의 저녁 시간을 갖기 위해 언니에게 도움을 요청하기로 결심했습니다.

아래와 같이 세 가지 방법으로 도움을 요청하려고 합니다.

확인하기 1. 효과적으로 도움을 요청하기

다음 중 김유견 씨가 효과적으로 도움을 요청하는 방법은 무엇인가요?

적절하다고 생각하는 항목에 모두 표시해 보세요.

□ 어머니를 돌보고 있지만, 주중에는 잠깐의 휴식이 필요하다고 언니에게 이야기합니다.

그리고, “언니가 할 수 있는 범위 내에서 어떻게 도와줄 수 있는지 함께 이야기해 보고 싶어.”라고 말합니다.

□ 돌봄에서 벗어나 휴식을 취하기 위해 주중 1시간짜리 수업을 듣기로 결심했지만, 그 이유를 설명하지 않고 단지

어머니를 1시간만 봐 달라고 부탁했습니다. 언니는 “미안하지만, 시간이 없어.”라고 답하고, 김유견 씨는 결국 수업을

취소하게 됩니다.

□ “언니가 아무것도 도와주지 않아 너무 힘들어! 언니는 엄마를 한 번도 돌본 적이 없잖아!”라고 언니에게 말합니다.

정답확인

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4. 활동하기

다른 사람들을 돌봄에 참여시키기 위한 계획

치매가 있는 사람을 돌보는 일에 다른 사람들을 어떻게 참여시킬 수 있을지 생각해 봅니다. 당신이 바라는 도움과 도움을

요청하고 싶은 사람들을 생각해 보세요. 그리고 도움을 요청하는 상황을 떠올려보며, 아래의 질문에 답해 보세요.

도움을 요청하고 싶은 사람은 누구인가요?

그 사람이 도움을 주고 싶어 하지 않는다면,

어떻게 하면 좋을까요?

도움을 받기 위해 어떻게 말할 수 있을까요?

그 사람이 도움을 주고 싶어 한다면, 어떻게 하면 좋을까요?

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4장. 주변의 도움 활용하기 (해답)

확인하기 1. 효과적으로 도움을 요청하기

다음 중 김유견 씨가 효과적으로 도움을 요청하는 방법은 무엇인가요?

Ｏ 어머니를 돌보고 있지만, 주중에는 잠깐의 휴식이 필요하다고 언니에게 이야기합니다.

그리고, “언니가 할 수 있는 범위 내에서 어떻게 도와줄 수 있는지 함께 이야기해 보고 싶어.”라고 말합니다.

효과적인 방법입니다. 자기 생각을 솔직하게 말하고 정기적인 휴식이 필요하다는 점을 전달합니다. 또한, 언니의 입장도

배려하며 말하고 있습니다.

Ｘ 돌봄에서 벗어나 휴식을 취하기 위해 주중 1시간짜리 수업을 듣기로 결심했지만, 그 이유를 설명하지 않고 단지

어머니를 1시간만 봐 달라고 부탁했습니다. 언니는 “미안하지만, 시간이 없어.”라고 답하고, 김유견 씨는 결국 수업을

취소하게 됩니다.

수동적인 방법입니다. 도움을 요청하는 데 효과적이지 않습니다. 언니는 동생이 힘들어하고 있다는 사실을 알지 못할

수 있습니다. 또한 동생은 갈등을 피하려는 마음에 솔직하게 자신의 어려움을 표현하지 않고, 자신감 없는 수동적인

태도로 도움을 요청하고 있습니다.

Ｘ “언니가 아무것도 도와주지 않아 너무 힘들어! 언니는 엄마를 한 번도 돌본 적이 없잖아!”라고 언니에게 말합니다.

공격적인 방법입니다. 도움을 요청하는 데 효과적이지 않습니다. 동생은 화가 나 있지만, 자신의 어려움을 명확히

표현하지 않아, 언니는 동생이 힘들어하고 있다는 것을 알지 못할 수 있습니다. 또한, 언니를 존중하지 않는 태도로

대화하는 것은 공격적인 방식으로 도움을 요청하는 것입니다.

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이번 과정을 마쳤습니다!

잘하셨습니다!

iS u

p p

o rt-K

o re

a 치 매

돌 봄

자 를

위 한

교 육

및 지

원 지

침 서

1장. 일상생활의 스트레스 줄이기

2장. 즐거운 활동을 위한 시간 만들기

3장. 다른 관점으로 생각하기

나 자신 돌보기

제3부

제3부. 나 자신 돌보기

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1장. 일상생활의 스트레스 줄이기

왜 중요한가요? 다른 사람을 돌보는 동안, 당신 자신을 돌보는 일도 중요합니다.

스트레스를 줄여야 돌봄이 덜 힘들어지고, 돌봄을 지속할 수 있는 힘도 생기게 됩니다.

어떤 도움이

되나요?

많은 시간을 들이지 않고도 스트레스를 줄이고,

에너지를 회복하는데 도움이 되는 방법을 알아 봅니다.

배우게 될 내용은

무엇인가요?

1. 이완이 왜 돌봄자에게 중요한가요?

2. 돌봄 스트레스를 줄이기 위해 어떤 이완 방법이 있을까요?

- 기본 호흡법

- 마음 챙김 호흡법

- 목 운동

- 숫자 세기

- 심상 기법

- 전신 스트레칭

- 근육 이완

3. 언제 어디서든 실천할 수 있는 이완 방법에는 어떤 것들이 있을까요?

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1. 이완이 왜 돌봄자에게 중요한가요?

사례를 살펴봅시다.

정휴안 씨는 치매가 있는 남편을 돌보며 일상생활에서 점점 더 긴장감을 느끼고 있습니다. 그녀의 친구는 이완을 통해 긴장을 풀고

부담을 줄이라고 조언하지만, 정휴안 씨는 그럴 시간도, 에너지도 없다고 말합니다. 그러자 친구는 시간이 많이 들지 않는 방법도

있고 오히려 이완을 통해서 에너지를 얻어 돌봄이 더 수월해질 거라고 조언합니다.

정휴안 씨는 친구의 조언을 따르기로 결심하고, 친구가 알려준 호흡 운동을 시도해 봅니다.

그 결과 호흡 운동을 통해 몸이 이완되고 긴장이 풀리는 느낌이 들어 “좋은 조언 고마워. 여전히 해야 할 일이 많지만, 긴장이 덜

느껴져.”라고 친구에게 고마움을 전했습니다. 이후 정휴안 씨는 긴장이 느껴질 때마다 호흡 운동을 실천하기로 결심합니다.

기억하기

이완의 장점:

• 긴장감을 완화해 줍니다.

• 에너지를 되찾게 해줍니다.

• 일을 더 수월하게 해낼 수 있게 합니다.

• 시간이 오래 걸리지 않습니다.

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2. 돌봄 스트레스를 줄이기 위해 어떤 이완방법이 있을까요?

이완을 취하는 방법에는 여러 가지가 있습니다. 다양한 방법을 시도해 보고, 자신에게 가장 잘 맞는 방법을 찾는 것이 중요합니다.

활동을 시작하기 전에 “나는 지금 얼마나 긴장하고 있지?”라고 스스로에게 물어봅니다. 활동이 끝난 후에 같은 질문을 다시

해봅니다. 이렇게 하면, 해당 활동이 긴장을 줄이는 데 얼마나 효과적이었는지 알 수 있습니다.

이제 일곱가지 이완 활동을 소개하고자 합니다. 이 중 세 가지 활동은 몇 분 이내에 마칠 수 있는 활동입니다(최대 5분).

나머지 활동은 조금 더 시간이 걸릴 수 있습니다(최대 10~15분).

다음 척도를 사용해, 현재 느끼는 긴장 정도를 1에서 10까지의 숫자로 표시해 보세요.

1은 긴장이 거의 없는 상태이고, 10은 긴장이 매우 높은 상태입니다.

이완 활동 전과 후에 긴장 정도를 확인해 봅니다.

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이완활동 1. 기본 호흡법

호흡에 집중하는 것은 긴장을 완화하는데 도움이 됩니다. 이 활동은 약 5분 정도 소요되며,

호흡을 통해 긴장을 줄일 수 있습니다.

주의: 만약 호흡에 어려움이 있다면, 이 활동은 적절하지 않을 수 있습니다.

수행 방법:

• 앉아서 하는 경우 의자 등받이에 등을 기대고 똑바로 앉습니다.

• 서서 하는 경우 허리를 펴고 똑바로 섭니다.

• 두 발을 바닥에 평평하게 놓습니다.

• 호흡에 집중하며 평소처럼 자연스럽게 호흡을 계속합니다.

• 배에 손을 얹고, 들이쉬고 내쉬는 호흡의 움직임을 느껴봅니다.

• 입으로 천천히 숨을 내쉬며 배를 최대한 끌어당깁니다.

• 이 과정을 여러 번 반복한 후 활동을 마무리합니다.

마음 안정화를 위한 복식훈련 기법

출처: 보건복지부 국립정신건강센터 유튜브,

2020.1

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이완활동 2. 마음 챙김 호흡법

마음 챙김 호흡은 마음을 진정시키고 스트레스를 줄이는

것을 도와줍니다. 이 활동은 리듬에 맞춰 배로 호흡하는

방식이며, 약 5분 정도 소요됩니다.

수행 방법:

• 의자에 바르게 앉아 얼굴과 어깨를 편안히 이완합니다.

• 손을 배에 올리고, 배로 호흡합니다.

• 편안한 속도로 4초간 숨을 들이마시고, 8초간 내쉽니다.

• 숨을 들이마실 때 배가 부풀고, 내쉴 때 배가 수축하는

것을 느낍니다.

• 평소 호흡으로 돌아가 1분간 자신의 호흡을 관찰하며

어떤 기분인지 느껴봅니다.

• 부정적인 판단 없이 자기 생각을 있는 그대로

받아들이기 위해 노력합니다.

• 마음이 산만해진다면 마음을 가라앉히고, 다시 호흡과

명상에 집중합니다.

이완활동 3. 목 운동

목 운동은 목의 긴장을 완화하고 뇌로 가는 혈류를

증가시킬 수 있습니다. 이 운동은 약 5분 정도 소요됩니다.

수행 방법:

• 천천히 집중하면서 시작합니다.

• 목을 앞으로 기울였다가 뒤로 젖힙니다.

• 고개를 들어 숨을 들이마시고, 턱을 가슴 쪽으로

떨어뜨리며 숨을 내쉽니다.

• 턱을 좌우로 돌립니다.

• 턱이 중앙에 있을 때 숨을 들이마시고, 옆을 볼 때 숨을

내쉽니다.

• 귀를 어깨 쪽으로 기울입니다.

• 머리가 가운데 있을 때 숨을 들이마시고, 귀가 어깨에

가까워질 때 숨을 내쉽니다.

• 이 동작을 5회 반복합니다.

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이완활동 4. 숫자 세기

숫자 세기는 호흡에 집중하고 20부터 1까지 숫자를 거꾸로 세면서 이완을 취하는 활동입니다.

이 활동은 약 5분 정도 소요됩니다.

수행 방법:

• 조용한 공간에서 편안하게 앉거나 누운 자세로 있습니다.

• 천천히 숨을 쉬며, 최소 3초간 들이마시고, 6초간 내쉽니다.

• 호흡에 집중하고, 숨을 들이마실 때마다 배꼽 아래 부위를 느껴봅니다.

• 마음과 정신이 차분해질 때까지 계속해서 호흡에 집중합니다.

• 숨을 내쉴 때마다 몸의 긴장이 서서히 풀리며 편안함을 느낍니다.

• 천천히 20부터 1까지 거꾸로 세기를 시작합니다.

• 각 숫자를 셀 때마다 더욱더 긴장이 완화될 것이며, 1에 도달할 때는 완전히 이완된다고 상상해 봅니다.

• 깊게 숨을 들이마시고 20을 세고, 천천히 숨을 내쉬며 몸을 이완합니다.

이후 다시 깊게 숨을 들이마시고 19를 세며, 천천히 숨을 내쉬며 몸을 이완하는 방식으로 계속합니다.

• 눈을 감은 채 이 활동을 반복합니다.

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이완활동 5. 심상 기법

자신이 좋아하는 장소나 사람들과 함께 있는 모습을 상상하며 몸과 마음을 이완하는 활동입니다.

이 활동은 약 5분 정도 소요됩니다. 이 활동을 시작하기 전에 다음을 떠올려 보세요.

• 자신이 좋아하는 장소, 사람, 음식, 물건을 상상해 보세요.

• 좋아하는 장소에 있다면 무엇을 듣고, 느끼고, 냄새 맡고, 맛볼 수 있을지 상상해 보세요.

• 장소, 사물, 또는 사람에 대해 매우 구체적으로 생각해 보세요. 예를 들어, 사물의 표면은 어떤 느낌인지, 어떤 냄새가

나는지 떠올려 보세요.

이제 자신이 좋아하는 장소에 있거나 좋아하는 사람들과 함께 있다고 상상하며 몸을 이완해 보세요.

수행 방법:

• 조용한 곳에서 편안하게 앉거나 눕습니다.

• 천천히 숨을 쉽니다.

• 숨을 들이마실 때 적어도 3초간 들이마시고, 내쉴 때 6초간 내쉽니다.

• 숨을 쉴 때, 자신의 호흡과 아랫배에 집중하면서 평온함을 느낍니다.

• 이제 자신이 좋아하는 장소에 있거나, 좋아하는 물건이나 사람들에 둘러싸여 있다고 상상해 봅니다.

• 눈을 감고 다시 반복합니다.

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이완활동 6. 근육 이완

근육 이완은 근육이 긴장될 때 특히 효과적입니다. 근육을 수축시키고 이완시켜 긴장을 줄이는 데 도움이 됩니다.

이 활동은 약 10~15분 정도 소요됩니다.

주의: 부상이 있거나 신체적으로 제약이 있는 경우, 이 활동은 적합하지 않을 수 있습니다. 이런 경우 다른 활동을 시도해

보세요.

다음은 유의해야 할 몇 가지 사항입니다:

• 각 근육 부위를 수축할 때 긴장이 느껴질 정도로만 조이며, 통증이 생기지 않도록 합니다.

• 근육을 약 5초간 긴장 상태로 유지합니다.

• 근육을 풀고 약 10초간 이완 상태를 유지합니다. 이완할 때 천천히 숨을 내쉬면 더 효과적입니다.

• 근육 이완을 마친 후, 몸이 활기를 되찾을 때까지 잠시 앉아 있습니다.

수행 방법:

• 손과 팔뚝: 주먹을 쥐고 5초간 유지한 다음, 10초간 긴장을 풀어줍니다. 숨을 쉬는 것을 잊지 않습니다. 근육을

긴장시키면서 숨을 들이마시고, 이완시키면서 숨을 내쉽니다.

• 팔: 팔을 어깨까지 올려 근육을 긴장시킨 다음, 5초간 유지하고 10초간 긴장을 풀어줍니다.

• 이마: 눈썹을 놀란 듯이 최대한 추어올린 상태로 5초 간 유지한 다음, 10초간 긴장을 풀어줍니다.

• 눈과 볼: 눈을 꼭 감고 5초간 유지한 다음, 10초간 긴장을 풀어줍니다.

• 입과 턱: 입을 하품하듯이 최대한 크게 벌려 5초간 유지한 다음, 10초간 긴장을 풀어줍니다.

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이완활동 6. 근육 이완 (계속)

• 목: 목 근육을 긴장시킬 때는 주의가 필요합니다. 정면을 보고, 머리를 뒤로 천천히 젖혀 천장을 올려다보는 자세를

취합니다. 5초간 유지한 후, 10초간 긴장을 풀어줍니다.

• 어깨: 어깨를 귀 쪽으로 올려 힘을 준 채 5초간 유지한 다음, 10초간 긴장을 풀어줍니다.

• 어깨뼈/등: 어깨뼈를 뒤로 밀어 서로 닿을 만큼 유지하고, 가슴이 앞으로 밀려 나오도록 합니다. 5초간 유지한 다음 10

초간 긴장을 풀어줍니다.

• 가슴과 배: 숨을 깊게 들이마셔, 폐와 가슴에 공기를 가득 채운 다음, 5초간 유지하고 10초간 긴장을 풀어줍니다.

• 엉덩이: 엉덩이 근육을 조인 채 5초간 유지한 다음, 10초간 긴장을 풀어줍니다.

• 허벅지: 허벅지 근육을 조인 채 5초간 유지한 다음, 10초간 긴장을 풀어줍니다.

• 종아리: 경련이 생기지 않도록 천천히 조심스럽게 진행합니다. 발가락을 몸 쪽으로 당겨 종아리 근육을 늘린 채, 5초간

유지한 다음, 10초간 긴장을 풀어줍니다.

• 발가락: 발가락을 아래쪽으로 구부리고 5초간 유지한 다음, 10초간 긴장을 풀어줍니다.

마음 안정화를 위한 근육이완운동

출처: 보건복지부 국립정신건강센터 유튜브,

2020.1

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이완활동 7. 전신 스트레칭

전신 스트레칭은 긴장을 줄일 수 있게 도와주고, 언제 어디서나 쉽게 할 수 있어 매우 편리합니다.

이 활동은 약 10분 정도 소요됩니다.

수행 방법:

• 서서 하거나 의자에 앉아서 합니다.

• 숨을 깊게 들이마셔 뱃속 깊숙한 곳까지 공기를 채운

다음, 천천히 내쉽니다.

• 숨을 내쉴 때, 몸에서 긴장이 사라지는 것을 느낍니다.

• 한 번 더 숨을 들이마신 다음, 잠시 멈추고 천천히

내쉽니다.

• 양팔을 옆으로 부드럽게 뻗어 펼칩니다.

• 어깨에 힘을 빼고 몸을 조금씩 스트레칭합니다.

• 양팔을 앞으로 부드럽게 뻗습니다.

• 등과 어깨의 근육이 풀리는 것을 느낍니다.

• 팔을 앞으로 조금 더 뻗으며 가능한 한 높이 들어

올립니다.

• 팔을 위로 뻗어 하늘에 닿을 것처럼 들어 올립니다.

• 양팔을 옆으로 뻗어 벽을 밀어내듯이 펼칩니다.

• 다시 팔을 앞으로 뻗습니다.

• 한 번 더 가능한 한 높이 손을 위로 뻗습니다.

• 천천히 팔을 옆으로 내립니다.

• 어깨를 뒤로 돌립니다.

• 몸에서 긴장이 사라지는 것을 느낍니다.

• 다시 한번 더 어깨를 뒤로 돌립니다.

• 어깨를 앞으로 돌립니다.

• 어깨를 으쓱하며 올렸다가 아래로 내립니다.

• 한 번 더 어깨를 으쓱하고, 마지막으로 한번 더

으쓱합니다.

• 상쾌한 숨을 깊게 한번 들이마시고 내쉬며 몸의 긴장을

모두 날려보냅니다.

• 한 번 더 숨을 들이마시고 내쉬며 긴장을 내려놓습니다.

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3. 언제 어디서든 실천할 수 있는 이완 방법에는 어떤 것들이 있을까요?

하루 중 언제 어디서든 이완을 취할 수 있습니다.

사례를 살펴봅시다.

장시온 씨는 가게에서 줄을 서서 기다릴 때조차, 해야 할 일이 많다는 생각에 자주 긴장감을 느꼈습니다.

그래서 앞으로는 줄을 서 있는 동안 호흡 운동을 하기로 결심했습니다.

실제로 호흡운동을 해보니 긴장감이 조금씩 줄어드는 것을 느꼈습니다.

매일 이완을 위해 특정 시간, 예를 들어 점심시간 후와 같은 시간을 정해보세요. 자신에게 제일 잘 맞는 시간대를 선택해보세요.

필요하다면 알람을 설정하여 이완시간을 잊지 않도록 하는 것도 도움이 됩니다.

기억하기

• 하루 중 언제 어디서나 이완을 취할 수 있습니다.

• 하루에 최소한 한 번은 긴장을 푸는 활동을 하기로 목표를 정합니다.

• 매일 이완을 위한 특정 시간을 설정할 수 있습니다. 필요하다면 알람을 활용할 수 있습니다.

• 긴장을 푸는 활동을 하면 새로운 에너지를 얻고 기분이 좋아질 수 있습니다.

• 짧은 시간의 활동이라도 큰 변화를 만들 수 있습니다.

• 이러한 활동은 긴장감을 줄이고, 장기적으로 치매대상자를 돌보는 일에 도움이 될 것입니다.

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이완활동

만약 이완이 도움이 되지 않았다면, 그 원인은 여러 가지가 있을 수 있습니다.

• 이완에 집중하기 어려운 상황일 수 있습니다. 집중할 수 있는 시간을 찾아 다시 시도해보는 것이 좋습니다.

• 좋아하는 활동이더라도 효과를 느끼기까지 시간이 더 필요할 수 있습니다.

• 선택한 활동을 규칙적으로 어느 정도 기간 동안 꾸준히 시도해 보는 것이 좋습니다.

• 선택한 활동이 자신에게 잘 맞지 않았을 수도 있습니다.

이럴 경우, 다른 활동을 시도해 보는 것이 좋습니다.

• 활동 시간이 너무 짧았을 수도 있습니다.

같은 활동을 반복하거나 다른 활동을 찾아보는 것도 도움이 됩니다.

이와 같이 이완 활동을 시도한 후에도 여전히 도움이 되지 않는다면,

여러분이 즐길 수 있는 다른 활동을 해보는 것도 좋습니다.

3부 2장 <즐거운 활동을 위한 시간 만들기>를 참고하여

자신이 즐길 수 있는 활동을 찾아보세요.

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이번 과정을 마쳤습니다!

잘하셨습니다!

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2장. 즐거운 활동을 위한 시간 만들기

왜 중요한가요? 다른 사람을 돌보는 동안에도 자기 자신을 돌보는 일은 중요합니다.

즐거운 활동은 돌봄자가 지치지 않고 지속적으로 돌봄을 제공할 수 있도록 도와줍니다.

어떤 도움이 되나요? 즐거운 활동은 돌봄자가 자신을 위한 시간을 갖고, 휴식을 취할 수 있도록 도와줍니다.

배우게 될 내용은

무엇인가요?

1. 즐거운 활동은 왜 중요할까요?

2. 즐거운 활동을 실천하는 데 어떤 방해요소가 있을까요?

3. 즐거운 활동을 실천할 수 있도록 돕는 방법에는 어떤 것들이

있을까요?

4. 즐거운 활동을 돌보는 사람과 함께 하려면 어떻게 해야 할까요?

1. 즐거운 활동은 왜 중요할까요?

장기간 지속되는 돌봄 속에서 즐거운 활동은 긴장을 완화시키고 돌봄을 계속할 수 있는 힘을 줍니다.

즐거운 활동은 산책이나 친구와의 대화처럼 소소한 일일 수도 있습니다.

하지만 즐거운 활동을 하는 동안 누군가가 돌봄을 대신 맡아야 하는 경우, 즐거운 활동을 실천하는 것이 쉽지 않을 수도 있습니다.

다음 여러 사례를 살펴보고, 즐거운 활동이 왜 중요한지 함께 알아보겠습니다.

2장. 즐거운 활동을 위한 시간 만들기

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사례를 살펴봅시다.

딸 김서담 씨는 치매가 있는 어머니를 돌보고 있습니다. 그녀는 대부분의 시간을 돌봄에 쏟고 있어서, 자신을

위한 시간을 거의 갖지 못하고 즐거운 활동에도 전혀 참여하지 못하고 있습니다. 최근 들어 김서담 씨는

피로감을 더 느끼고, 자신이 예전만큼 어머니를 잘 돌보지 못하고 있다는 생각이 듭니다.

동생 정현로 씨는 치매가 있는 형을 돌보고 있습니다.

평상시 충분한 수면을 취하지 못하고, 오후에 낮잠을 자는 것조차 어렵습니다.

최근에는 매일 오후, 여동생에게 도움을 요청하여 잠시 낮잠을 자거나 신문을 읽는 시간을 마련하고 있습니다.

남편 이온재 씨는 치매가 있는 아내를 돌보고 있습니다. 최근 요양보호사를 고용해 주 3회 아내를 돌보게 하고 있습니다.

요양보호사가 와 있는 시간동안 신문을 읽거나 산책을 하는 등 자신을 위한 시간을 보냅니다.

기억하기

• 자신을 위한 시간을 만들지 못하면, 결국 지치게 되어 돌봄을 계속하기 어려워질 수 있습니다.

• 가족이나 친구에게 도움을 요청하여 자신을 위한 시간을 가져야 합니다.

• 경제적 여건이 된다면, 요양보호사를 통해 돌봄에 도움을 받을 수 있습니다.

이와 같이 필요한 도움을 구하면, 자신을 위한 시간을 가질 수 있습니다.

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어떤 즐거운 활동을 하고 싶나요?

자신을 위한 시간이 생기더라도, 어떤 활동을 하고 싶은 지 바로 생각해 내기 어려울 수도 있습니다.

하지만, 선택할 수 있는 활동은 다양하며, 짧은 시간안에서도 좋아하는 활동을 즐길 수 있습니다.

아래의 활동을 참고하여 자신이 하고 싶은 즐거운 활동 목록을 작성해 보세요.

활동하기

하고 싶은 활동이라고 생각되는 항목에 최소 두 가지 이상 표시해 보세요.

만약 좋아하는 활동이 목록에 없다면, ‘기타’에 자유롭게 적어주세요.

□ 신문 읽기

□ TV 보기

□ 친구나 가족 만나기

□ 요리하기

□ 음악듣기

□ 식물 키우기

□ 책 읽기

□ 낮잠 자기

□ 쇼핑 가기

□ 산책/등산하기

□ 운동하기

□ 동영상 감상하기

□ 화투놀이하기

□ 기타:

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2. 즐거운 활동을 실천하는 데 어떤 방해가 되는 요소가 있을까요?

사례를 살펴봅시다.

딸 김여은 씨는 치매가 있는 어머니를 돌보기 위해 대부분의 시간을 할애하고 있습니다.

그녀는 어떤 도움도 받지 못하고 있어 항상 피곤합니다.

어머니를 돌보느라 힘들고, 시간도 없어 좋아하던 활동도 그만두게 되었습니다.

결국, 너무 지친 김여은 씨는 친구에게 도움을 요청하기로 결심합니다.

그 결과 자신을 위한 시간을 가질 수 있게 되었고, 즐거운 활동에 다시 참여할 수 있게 되었습니다.

이후, 몸과 마음에 활력을 되찾고, 어머니를 돌보는 일도 예전보다 더 잘하고 있다고 느낍니다.

즐거운 활동을 할 수 없게 만드는 여러 가지 이유

많은 돌봄자들이 김여은 씨처럼 시간이 없어 즐거운 활동을 할 수 없다고 느낄 수 있습니다.

하지만 그 외에도, 즐거운 활동을 하지 못하는 이유는 다양하게 있을 수 있습니다.

다음에서 그 이유들을 살펴보고 어떻게 하면 즐거운 활동을 실천할 수 있을지

함께 고민해 보겠습니다.

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활동하기

다음은 즐거운 활동을 하지 못하는 여러 가지 이유입니다. 자신에게 해당하는 것에 표시해 보세요.

□ 시간 부족

너무 바빠서 여유 시간을 찾기 어렵다고 느낄 수 있습니다. 하지만 낮이든 밤이든 잠깐이라도 자신을 위한 시간을 마련하는 것은

매우 중요합니다. 시간이 부족하더라도 일과 속 짧은 시간동안 할 수 있는 즐거운 활동은 많습니다.

□ 에너지 부족

피로가 쌓여 에너지가 부족할 수 있습니다. 하지만 즐거운 활동을 통해 몸과 마음에 활력을 불어넣으면 에너지를 회복할 수

있습니다.

□ 경제적 어려움

즐거운 활동을 하려면 돈을 많이 써야 한다고 생각할 수 있습니다. 하지만, 비용이 많이 들지 않고도 즐거운 활동은 가능합니다.

친구와 차 마시기, 혼자 산책하기와 같은 간단한 활동으로도 충분히 즐거운 시간을 보낼 수 있습니다.

□ 정서적으로 힘든 상태

마음이 지쳐 즐거운 활동을 하고 싶은 기분이 들지 않을 수 있습니다. 그럴 때는 활동을 시작하는 것 조차 힘들게 느껴질 수

있지만, 일단 시작하면 기분이 훨씬 나아질 수 있습니다. 오히려, 아무런 활동도 하지 않으면 기분이 더 가라앉을 수 있습니다.

□ 신체적 제약

신체적인 제약이 있으면 즐거운 활동을 할 수 없다고 생각할 수 있습니다. 하지만, 몸을 움직이기 힘들어도 가능한 활동을 찾을

수 있습니다. 예를 들어, 책 읽기, 게임, 친구와 대화하기 등은 신체적 제약에도 불구하고 가능한 활동들입니다.

□ 죄책감

잠시라도 자신이 돌보는 사람에게서 벗어나 있는 것에 대해 죄책감을 느낄 수 있습니다. 그러나 좋아하는 활동을 하고 휴식을

취하는 시간은 에너지를 회복할 뿐 아니라 다시 돌봄을 잘 제공하기 위해서도 필요합니다. 좋은 돌봄자는 자기 자신도 잘 돌보는

사람입니다.

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즐거운 활동을 위한 제안

• 일상적인 일 중 일부는 다른 사람에게 도움을 요청하는 것도 좋은 방법입니다.

• 해야 할 일을 하지 않았을 때 어떤 문제가 생길지 생각해 봅니다. 예를 들어, 집 청소를 매일 하지 않는다고 무슨 문제가

생길까요? 이렇게 생각하면 더 융통성을 갖게 되고, 그만큼 더 많은 시간을 가질 수 있습니다.

• 한 번에 한 가지 활동에 집중하고, 시작한 일은 가능하면 마무리하도록 합니다. 시작한 일을 마치지 못하면 만족스럽지 못하고,

다음 일에 집중하기 어려울 수 있습니다. 일을 마친 후 다음 일을 시작하면 더 많은 활력을 느낄 수 있습니다.

• 시간을 잘 관리할 수 있는 방법에 대해 생각해 보세요. 일정표나 달력을 사용하여

해야 할 일을 정리하는 것도 좋은 방법입니다.

• 시간을 잘 관리하는 방법에 대해 다른 사람과 이야기를 나누어 보세요. 다른 사람의

의견이나 제안을 듣는 것도 도움이 될 수 있습니다.

도움을 요청해 보세요.

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3. 즐거운 활동을 실천할 수 있도록 돕는 방법에는 어떤 것들이 있을까요?

앞서 선택한 즐거운 활동들을 얼마나 잘 실천할 수 있을지 평가해 보세요.

각 활동에 대해 다음 중 어느 정도에 해당하는지 생각해 보세요:

3. 활동하기

하고 싶은 활동이라고 생각되는 항목에 최소 두 가지 이상 표시해 보세요. 그리고 그 활동을 어느정도 잘 실천할 수 있을지

평가해보세요. 아래 목록에 좋아하는 활동이 없다면, ‘기타’란에 자신이 원하는 활동을 작성해 보세요.

1. 전혀 할 수 없다 2. 거의 할 수 없다 3. 어느 정도 할 수 있다 4. 할 수 있다 5. 매우 잘 할 수 있다

□ 신문보기 □ □ □ □ □

□ TV 보기 □ □ □ □ □

□ 친구나 가족 만나기 □ □ □ □ □

□ 요리하기 □ □ □ □ □

□ 음악 듣기 □ □ □ □ □

□ 식물 키우기 □ □ □ □ □

□ 책 읽기 □ □ □ □ □

□ 낮잠 자기 □ □ □ □ □

□ 쇼핑 가기 □ □ □ □ □

□ 산책/등산하기 □ □ □ □ □

□ 운동하기 □ □ □ □ □

□ 동영상 감상하기 □ □ □ □ □

□ 화투놀이하기 □ □ □ □ □

□ 기타: □ □ □ □ □

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2장. 즐거운 활동을 위한 시간 만들기

오늘 할 수 있는 즐거운 활동은 무엇인가요?

기억하기

작은 목표부터 시작해 보세요. 첫 번째 시도가 성공적이었다면 즐거운 활동을 하나씩 더 추가해 보세요.

더 많이 실천할 수 있도록 자신이 원하는 활동을 계속해서 더 생각해 봅니다.

• 즐거운 활동은 실천 가능한 것이어야 합니다.

• 즐거운 활동이 실천 불가능하다고 느낀다면, 여러 가지 이유가 있을 수 있습니다.

• 그럼에도 불구하고, 즐거운 활동을 시도할 수 있는 방법은 생각보다 많이 있습니다.

4. 즐거운 활동을 돌보는 사람과 함께 하려면 어떻게 해야 할까요?

당신이 돌보고 있는 사람과 함께 즐거운 활동을 하는 것도 매우 의미 있는 경험이 될 수 있습니다.

하지만 처음에는 두 사람 모두에게 적합한 활동을 찾기 어려울 수도 있습니다.

이번 활동에서는 함께 할 수 있는 즐거운 활동 목록을 만들어 보겠습니다. 먼저 아래의 사례를 한번 살펴보겠습니다.

사례를 살펴봅시다.

장휘담 씨는 치매가 있는 형을 돌보고 있습니다. 장휘담 씨는 여동생이 형을 돌보는 동안 낮잠을 자기도 하고, 형과 함께 동네를

산책하기도 합니다. 산책을 하는 동안 형은 기분이 좋아지고 장휘담 씨도 운동이 되고 신선한 공기를 마실 수 있습니다.

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2장. 즐거운 활동을 위한 시간 만들기

돌보는 사람과 함께, 더 자주 하고 싶은 활동은 무엇인가요?

아래 활동 목록을 살펴보고 당신이 돌보는 사람과 함께 할 수 있는 활동을 확인해 보세요.

활동하기

아래 목록에서 돌보는 사람과 함께 더 자주 하고 싶은 활동을 최소한 하나 이상 표시해 보세요.

목록에 없는 활동이 있다면, ‘기타’란에 원하는 활동을 추가해 보세요.

□ 음악 듣기

□ 악기 연주하기

□ 산책하기

□ 소설, 신문, 기사 등을 듣거나 읽기

□ 외식하기

□ 요리하고 간식 준비하기

□ 새나 동물 구경하기

□ 공예 하기 (뜨개질, 자수 등)

□ 사진 감상하기

□ 나들이 나가서 맛있는 음식 먹기

□ 행복한 기억을 떠올리며 대화하기

□ 친구 초대하기

□ 기타:

비록 실천하기 어렵더라도 즐거운 활동은 자신에게 도움이 되며, 누군가를 지속적으로 돌보기 위해서도 꼭 필요한 일이라는 것을

기억하기 바랍니다.

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이번 과정을 마쳤습니다!

잘하셨습니다!

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3장. 다른 관점으로 생각하기

왜 중요한가요? 당신의 생각이 감정을 좌우할 수 있습니다.

부정적인 생각은 우리의 기분을 나쁘게 만들 수 있습니다.

어떤 도움이

되나요?

새로운 관점을 갖고,

부정적인 생각을 긍정적으로 바꾸도록 도와줄 것입니다.

배우게 될 내용은

무엇인가요?

1. 우리의 생각은 어떻게 감정에 영향을 줄까요?

2. 부정적인 생각을 긍정적으로 바꾸려면 어떻게 하면 좋을까요?

3. 관점을 바꾸어 기분을 전환하는 방법에는 어떤 것이 있을까요?

3장. 다른 관점으로 생각하기

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1. 우리의 생각은 어떻게 감정에 영향을 줄까요?

스트레스 상황을 다루는 방법에는 여러 가지가 있습니다. 그중 하나는 다른 관점에서 생각하는 것입니다.

화가 나거나, 슬프거나, 행복하거나, 죄책감을 느끼는 것은 상황 그 자체가 아니라,

그 상황을 어떻게 생각하느냐에 따라 달라집니다. 다음 예시를 살펴봅시다.

• 무언가를 물을 때마다, 돌보는 사람이 화를 냅니다

• 도움을 주겠다고 약속한 가족이 오지 않거나, 약속을 취소합니다.

• 치매대상자가 물건을 자꾸 잃어버립니다.

• 치매대상자를 잘 돌보지 않았다고 가족들에게 비난을 받았습니다.

사람들은 흔히 감정은 사건 그 자체로 인해 생긴다고 생각합니다.

그러나 실제로는, 그 사건을 어떻게 받아들이고 생각하느냐에 따라 감정이 달라질 수 있습니다.

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3장. 다른 관점으로 생각하기

사례를 살펴봅시다.

아내 박해연 씨는 치매가 있는 남편과 함께 지내고 있습니다. 어느 날, 박해연 씨가 친구를 만나러 나가려 하자 남편이 이렇게

말합니다. “리모컨 어디 갔지? 리모컨이 없는데 당신 나가면 어떡해!” 이 말을 들은 박해연씨는 ‘앞으로 남편을 혼자 두고

외출하기가 점점 더 어려워지겠구나.’라는 생각이 들기 시작했습니다. 그리고 이런 생각은 그녀를 점점 더 우울하게 만들었습니다.

확인하기 1. 감정과 생각

아내는 어떻게 대처해야 할까요?

적절하다고 생각하는 항목에 모두 표시해 보세요.

□ 남편에게 지금은 리모컨 찾는 것을 도와줄 수 없다고 말하고, 친구를 만나러 외출합니다.

□ 리모컨을 발견할 때까지 계속 찾습니다.

□ 남편에게 앞으로 리모컨을 잃어버리지 않도록 조심하라고 말합니다.

□ ‘남편은 치매가 있고, 물건을 잃어버리면 걱정을 많이 해. 리모컨을 찾는 걸 먼저 도와주고 약속 장소에 가면 되지.’ 라고

생각하고, 친구에게 전화를 걸어 상황을 설명한 후 늦을 것 같다고 말합니다.

기억하기

• 부정적인 사건을 해결하는 방법에는 여러 가지가 있습니다. 그 중에서 중요한 한 가지는 생각을 바꾸는 것입니다.

• 부정적인 생각은 우리의 기분을 나쁘게 만들 수 있지만, 다른 관점에서 생각하면, 기분이 좋아지고 상황을 더 잘 해결할 수

있습니다.

정답확인

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아내의 부정적인 생각과 긍정적인 생각

아내는 남편이 리모컨을 찾지 못했을 때 ‘이제 남편을 혼자 두고 외출하기가 점점 더 어려워지겠구나.’

라고 생각했고, 이러한 생각은 그녀를 점점 더 우울하게 만들었습니다.

이 사례는 아내가 상황을 부정적인 방식으로 생각하고 있다는 것을 보여줍니다.

이와 같은 부정적인 생각은 상황에 대한 효과적인 대처를 어렵게 만들 수 있습니다.

하지만, 이렇게 생각을 바꿔볼 수도 있습니다.

‘남편은 치매가 있고, 물건을 잃어버리면 걱정할 때가 많아. 리모컨 찾는 걸 먼저 도와주고 약속 장소에 가면 되지.’ 이렇게 생각을

달리하면 마음이 차분히 가라 앉고 상대방을 더 배려하게 됩니다.

이와 같은 긍정적인 생각은 상황을 더 효과적으로 대처하도록 도와줍니다.

기억하기

• 당신을 화나게 하거나, 슬프게 하거나, 행복하거나, 비참하게 만드는 것은 사건 그 자체가 아닙니다.

• 그 보다는 긍정적인 생각을 하느냐 부정적인 생각을 하느냐에 따라 상황에 대한 당신의 반응과 기분이 달라질 수 있습니다.

• 생각을 바꾸면, 기분도 바뀔 수 있습니다.

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부정적인 생각은 우리의 기분을 더 힘들게 만들 수 있습니다.

고이담 씨는 치매대상자를 몇 년간 돌보고 있습니다. 그 과정에서 여러 가지 생각들을 많이 하게 되는데 어떤 생각은 그녀를 더

힘들게 만들고, 어떤 생각은 오히려 기분을 좋게 만들어줍니다.

확인하기 2. 기분을 좋게 만들어 주는 생각들

어떻게 하면 고이담 씨의 기분이 더 좋아질 수 있을까요?

적절하다고 생각하는 항목에 모두 표시해 보세요.

□ 휴식 시간을 갖는 것은 더 나은 돌봄을 제공하는 데 도움이 된다고 생각합니다.

□ 돌보고 있는 가족이 잘 지내지 못하면 자신이 잘 돌보지 못해서라고 생각합니다.

□ 내가 혼자서 돌보면 대상자의 치매가 좋아질 것이다.

□ 돌보는 일이 얼마나 힘든지 아무도 이해하지 못한다고 생각합니다.

□ 내가 아니면 제대로 돌볼 사람이 없다고 생각합니다.

□ 다른 사람에게 도움을 요청합니다.

□ 치매는 질병이므로, 누구의 잘못도 아니라고 생각합니다.

기억하기

• 부정적인 생각은 우리의 기분을 더 힘들게 만들 수 있습니다.

• 긍정적인 생각은 기분을 좋게 하고, 상황에 더 효과적으로 대처할 수 있도록 도와줍니다.

• 기분이 좋아지기 위해서는, 먼저 내가 어떤 부정적인 생각을 하고 있는지 알아차리는 것이 중요합니다.

정답확인

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2. 부정적인 생각을 긍정적으로 바꾸려면 어떻게 하면 좋을까요?

사례를 살펴봅시다.

최윤하 씨는 치매가 있는 아버지를 돌보고 있습니다. 어느 날 쇼핑 중 우연히 만난 친구가 ‘요즘 어떻게 지내? 아버님 돌보는 데

도움이 필요하지 않아?’ 라고 물었습니다. 그 순간 최윤하 씨는 마음속으로 ‘도움이 필요하냐고 묻는 건.. 내가 아버지를 제대로

돌보지 못한다고 생각해서 그런걸까?’라고 생각합니다.

확인하기 3. 생각이 우리의 감정에 어떤 영향을 미치나요?

최윤하 씨는 어떤 기분일까요?

적절하다고 생각하는 항목에 모두 표시해 보세요.

□ 화가 납니다　 □ 죄책감을 느낍니다　 □ 행복합니다　 □ 외롭습니다　 □ 슬픕니다　 □ 든든합니다　 □ 속상합니다

만약 최윤하 씨가 속으로 ”도움이 필요하냐고 묻는 건, 친구가 나와 아버지를 걱정하고, 우리가 잘 지내고 있는지 확인하고 싶어서

그런거겠지” 라고 생각했다면 어땠을까요?

확인하기 4. 감정을 긍정적인 생각과 연결하면 기분이 좋아질 수 있어요

긍정적인 생각으로 바꾼 후 최윤하 씨는 어떤 기분이 들었을까요?

적절하다고 생각하는 항목에 모두 표시해 보세요.

□ 화가 납니다　 □ 죄책감을 느낍니다　 □ 행복합니다　 □ 외롭습니다　 □ 슬픕니다　 □ 든든합니다　 □ 속상합니다

기억하기

• 일어난 사건 자체는 바꿀 수 없지만, 그 사건에 대한 나의 반응이나 생각은 바꿀 수 있습니다.

정답확인

정답확인

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1. 활동하기

당신이 가지고 있는 부정적인 생각은 무엇인가요?

앞서 긍정적인 생각과 부정적인 생각의 예시를 살펴봤습니다. 아래는 돌봄 상황에서 흔히 가질 수 있는 부정적인 생각의 목록입니다.

당신이 가지고 있는 부정적인 생각에 모두 표시해보고, 그 외 부정적인 생각들이 있다면 ‘기타‘에 적어 보세요.

□ 나는 모든 일을 혼자 감당해야 한다고 생각합니다.

□ 내가 돌보는 사람이 더 이상 나를 배려하지 않는다고 생각합니다.

□ 내가 돌보는 사람이 잘 지내지 못하면, 내가 제대로 돌보지 못했기 때문이라고 생각합니다.

□ 내가 잘 돌보면 치매 증상이 더 좋아질 수 있다고 생각합니다.

□ 치매대상자를 위해 내가 항상 옆에 있어야 한다고 생각합니다.

□ 좋은 돌봄자는 자신의 욕구나 필요를 우선시해서는 안 된다고 생각합니다.

□ 아무도 돌보는 일로 내가 얼마나 힘든 지 이해하지 못한다고 생각합니다.

□ 내가 아니면 제대로 돌볼 사람이 없다고 생각합니다.

□ 가족이 치매 진단을 받은 뒤로 내 삶이 더 힘들어졌다고 생각합니다.

□ 돌봄자로서 나를 위한 시간을 낼 여유가 없다고 생각합니다.

□ 치매대상자에게 미안한 마음이 듭니다.

□ 다른 사람들은 나보다 더 나은 상황에 있다고 생각합니다.

□ 기타:

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2. 활동하기

당신이 가지고 있는 긍정적인 생각은 무엇인가요?

앞서 긍정적인 생각과 부정적인 생각의 예시를 함께 살펴봤습니다. 아래는 돌봄 상황에서 느낄 수 있는 긍정적인 생각의

목록입니다. 당신이 가지고 있는 긍정적인 생각에 모두 표시해보고, 그 외 긍정적인 생각들이 있다면 ‘기타’에 적어 보세요.

□ 휴식 시간을 갖는 것은 더 나은 돌봄을 제공하는 데 도움이 된다고 생각합니다.

□ 다른 사람과 나의 감정을 나누는 것은 돌봄 부담을 덜어주는 데 도움이 된다고 생각합니다.

□ 다른 사람에게 도움을 요청하는 것은 돌봄 부담을 나누는 데 도움이 된다고 생각합니다.

□ 나만의 시간을 가지는 것은 더 나은 돌봄을 제공하는 데 도움이 된다고 생각합니다.

□ 치매는 질병이므로, 누구의 잘못도 아니라고 생각합니다.

□ 항상 다른 사람들의 의견을 따를 필요는 없습니다.

□ 기타:

기억하기

• 부정적인 생각을 긍정적인 생각으로 바꾸면, 기분이 훨씬 나아질 수 있습니다.

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3. 다른 관점으로 기분 전환하기

일어난 일 자체는 바꿀 수 없지만, 그 일에 대한 나의 반응은 바꿀 수 있습니다.

즉, 상황을 바꿀 수는 없지만, 상황에 관한 나의 생각은 바꿀 수 있습니다.

사례를 살펴봅시다.

이남온 씨는 치매가 있는 아내를 돌보고 있습니다. 다음은 이남온 씨가 작성한 글입니다.

당신을 속상하게 하거나 우울하게 만든 사건은 무엇인가요?

어제 아내와 함께 친구 집을 방문해 함께 차를 마셨습니다.

차를 마신 뒤 컵을 치우는 중에, 아내가 실수로 컵을 바닥에 떨어뜨렸습니다.

친구들이 컵을 치우려 하자, 아내는 도와주지 않고 오히려 방해했습니다.

그런데 아내는 자신의 행동에 대해 사과 하지도 않고, 아무 말 없이 그저 웃기만 했습니다.

어떤 부정적인 생각이 들었나요?

친구들이 아내의 행동에 화가 나서, 다시는 우리를 자기 집에 초대하지 않을 거라는 생각이 들었습니다.

어떻게 생각하는 것이 도움이 될까요?

치매가 있는 아내는 예전처럼 생각하거나 행동하기 어렵습니다.

아내가 치매로 인해 사고능력이 저하됐다고 친구들에게 설명했기 때문에, 그들도 아내를 비난하지 않을 거라 생각합니다.

긍정적인 생각이 어떻게 당신을 기분 좋게 만들 수 있나요?

걱정하거나 부끄러워 하는 대신, 친구들과 함께 하루를 즐겁게 보냈다고 느낀다면 기분이 좋아질 수 있다고 생각합니다.

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사례를 살펴봅시다.

김온재 씨는 치매가 있는 아내를 돌보고 있습니다. 다음은 김온재 씨가 작성한 글입니다.

당신을 속상하게 하거나 우울하게 만든 사건은 무엇인가요?

일주일 전, 여동생이 우리 집을 방문했습니다. 하루가 끝날 무렵, 나는 치매가 있는 남동생에게 ‘오늘 하루 정말 좋았어,

그렇지?’라고 물었습니다. 하지만 남동생은 오늘 무엇을 했는지 기억나지 않아 잘 모르겠다며, 피곤해서 빨리 자고 싶다고

말했습니다.

어떤 부정적인 생각이 들었나요?

남동생이 모든 걸 잊어버리기 때문에, 우리가 함께 하는 모든 일이 의미 없게 느껴졌습니다. 그의 치매 때문에 모든 것이 엉망이

되어버렸다는 생각이 들었습니다.

어떻게 생각하는 것이 도움이 될까요?

비록 남동생이 우리가 함께 한 일을 기억하지 못하더라도 좋은 하루를 보냈다는 그 사실이 중요합니다.

남동생은 오늘 많이 웃었고, 여동생이 와서 얼마나 좋았는지를 계속 말했습니다. 기억을 못 한다는 건 꼭 나쁜 일이 아니라는

생각이 들었습니다. 남동생은 이제 ‘바로 지금, 이 순간’을 살아가는 사람으로 변한 것뿐이라고 생각합니다. 어쩌면 모든 것을

기억하려 한다면, 오히려 ‘지금, 이 순간’을 행복하게 사는 것이 어려울 수도 있겠다는 생각이 들었습니다.

긍정적인 생각이 어떻게 당신을 기분 좋게 만들 수 있나요?

슬프고 비참한 기분을 느끼는 대신, 저와 남동생이 여동생과 보낸 하루를 행복하게 받아들일 수 있었습니다.

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이제 당신 차례입니다.

다음 활동에서는 부정적인 생각을 긍정적인 생각으로 바꾸는 활동을 해보겠습니다.

최근 당신을 속상하게 했던 사건을 하나 떠올려보고, 아래 질문에 답해 보세요.

도움이 필요하면, 앞서 다룬 예시를 참고해서 답을 작성해 보세요.

당신을 속상하게 하거나 우울하게 만든 사건은 무엇인가요?

어떤 부정적인 생각이 들었나요?

어떻게 생각하는 것이 도움이 될까요?

긍정적인 생각이 어떻게 당신을 기분 좋게 만들 수 있나요?

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당신을 속상하게 만든 또 다른 사건이 있다면, 그것에 대해서도 적어 보세요.

당신을 속상하게 하거나 우울하게 만든 사건은 무엇인가요?

어떤 부정적인 생각이 들었나요?

어떻게 생각하는 것이 도움이 될까요?

긍정적인 생각이 어떻게 당신을 기분 좋게 만들 수 있나요?

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지금까지의 내용을 정리해 봅시다.

• 일어난 일은 바꿀 수 없지만, 그 일에 대한 나의 생각은 바꿀 수 있습니다.

• 부정적인 생각을 긍정적인 생각으로 바꿈으로써, 기분이 더 좋아질 수 있습니다.

• 새로운 관점으로 생각하면, 같은 상황도 다르게 느껴지고 기분이 한결 좋아질 수 있습니다.

기억하기

• 속상하거나 우울하고, 슬프거나 화가 나는 감정을 피할 수 없는 순간들이 있습니다.

• 예를 들어, 돌보는 사람이 크게 아파서 병원에 가야 할 때나, 소중한 가족이나 친구를 잃었을 때처럼 말입니다.

• 이런 상황에서 무조건 생각을 바꾸려고 하는 것은 오히려 나의 진짜 감정을 인정하지 않는 것일 수 있습니다.

• 먼저 지금의 감정을 있는 그대로 알아차리고, 조금씩 새로운 관점으로 생각할 수 있도록 노력해 봅니다.

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확인하기 1. 감정과 생각

아내는 어떻게 대처해야 할까요?

Ｘ 남편에게 지금은 리모컨 찾는 것을 도와줄 수 없다고 말하고, 친구를 만나러 외출합니다.

이 방법은 도움이 되지 않습니다. 치매가 있는 남편은 지금 리모컨을 잃어버려 걱정하고 있습니다. 아내가 그냥 외출해

버리면, 남편은 화를 내며 불안해할 수 있습니다.

Ｘ 리모컨을 발견할 때까지 계속 찾습니다.

이 방법은 도움이 되지 않습니다. 물론 남편은 리모컨이 있어야 안정감을 느낄 수 있겠지만 그로 인해 친구를 만나는

기회를 놓친다면 아내는 우울해질 수 있습니다.

Ｘ 남편에게 앞으로 리모컨을 잃어버리지 않도록 조심하라고 말합니다.

이렇게 말하는 것은 도움이 되지 않습니다. 치매가 있는 남편이 물건 둔 곳을 잊어버리는 것은 어쩔 수 없는 일입니다.

Ｏ ‘남편은 치매가 있고, 물건을 잃어버리면 걱정을 많이 해. 리모컨을 찾는 걸 먼저 도와주고 약속 장소에 가면 되지.’ 라고

생각하고, 친구에게 전화를 걸어 상황을 설명한 후 늦을 것 같다고 말합니다.

이 방법은 도움이 될 수 있습니다. 남편이 리모컨을 잃어버린 사실 자체보다, 남편을 항상 도와주어야 하고, 더 이상

그를 혼자 두면 안 된다는 걱정이 아내를 더 힘들게 할 수 있습니다. 친구에게 전화를 걸어 양해를 구한 후, 남편을 도와

리모컨을 찾으면 남편도 안심할 수 있고 아내도 친구를 만날 수 있습니다.

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확인하기 2. 기분을 좋게 만들어 주는 생각들

치매대상자를 몇 년간 돌보고 있는 고이담 씨의 기분을 더 좋게 만들 수 있는 생각에 모두 표시해 보세요.

Ｏ 휴식 시간을 갖는 것은 더 나은 돌봄을 제공하는 데 도움이 된다고 생각합니다.

이 생각은 도움이 되는 생각입니다. 누구든 자신을 위한 시간을 가질 때 죄책감을 느낄 필요는 없습니다. 자신을 위한

시간을 갖는 것은 장기적인 돌봄에도 도움이 될 수 있습니다.

Ｘ 돌보고 있는 가족이 잘 지내지 못하면 자신이 잘 돌보지 못해서라고 생각합니다.

이러한 생각은 기분을 더 우울하게 만듭니다. 치매대상자의 기분은 돌봄자의 노력만으로 결정되지 않으며, 치매,

우울증, 기능상태, 또는 성격과도 관련이 있을 수 있습니다.

Ｘ 내가 혼자서 돌보면 대상자의 치매가 좋아질 것이다.

이런 생각은 실망감을 줄 수 있습니다. 치매는 시간이 지날수록 악화하며, 아직 명확한 치료법은 없습니다.

Ｘ 돌보는 일이 얼마나 힘든지 아무도 이해하지 못한다고 생각합니다.

이런 생각은 속상함, 고립감, 외로움을 느끼게 합니다. 돌봄이 얼마나 힘든 일인지 이해 못 하는 사람도 있겠지만, 다른

사람들에게 이야기하는 것은 그들이 치매를 더 잘 이해하게 하고, 당신의 부담을 덜어줄 수 있습니다.

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확인하기 2. 기분을 좋게 만들어 주는 생각들 (계속)

치매대상자를 몇 년간 돌보고 있는 고이담 씨의 기분을 더 좋게 만들 수 있는 생각에 모두 표시해 보세요.

Ｘ 내가 아니면 제대로 돌볼 사람이 없다고 생각합니다.

이런 생각은 외로움과 고립감, 압박감을 줄 수 있습니다. 다른 사람들이 나와 다르게 돌본다고 해서 잘 돌보지 못한다는

것을 의미하지는 않습니다. 오히려 돌봄에 다른 사람들을 참여시키는 것이, 돌봄자의 부담을 줄여주는 중요한 일

입니다.

Ｏ 다른 사람에게 도움을 요청합니다.

이런 생각은 돌봄자에게 더 많은 선택권을 줄 수 있습니다. 다른 사람들을 돌봄에 참여시키는 것은 여러 가지 장점이

있습니다. 예를 들어, 돌봄자가 정기적으로 휴식을 취할 수 있어 더 오랫동안 안정적으로 돌봄을 제공할 수 있습니다.

Ｏ 치매는 질병이므로, 누구의 잘못도 아니라고 생각합니다.

이 생각은 도움이 될 수 있습니다. 이런 생각은 죄책감을 느끼는 것을 막아줍니다.

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확인하기 3. 생각이 우리의 감정에 어떤 영향을 미치나요?

최윤하 씨는 어떤 기분일까요?

최윤하 씨는 ‘도움이 필요하냐고 묻는 건 내가 아버지를 제대로 돌보지 못한다고 생각해서 그런걸까?’라고 생각합니다.

다음은 그에게 도움이 되지 않는 생각입니다.

■ 화가 납니다　 ■ 죄책감을 느낍니다　 □ 행복합니다　 ■ 외롭습니다　 ■ 슬픕니다　 □ 든든합니다　 ■ 속상합니다

확인하기 4. 감정을 긍정적인 생각과 연결하면 기분이 좋아질 수 있어요

긍정적인 생각으로 바꾼 후 최윤하 씨는 어떤 기분이 들었을까요?

최윤하 씨는 속으로 ‘도움이 필요하냐고 묻는 건, 친구가 나와 아버지를 걱정하고, 우리가 잘 지내고 있는지 확인하고 싶어서

그런거겠지’라고 생각합니다.

이런 생각은 그가 행복하거나 누군가로부터 지지를 받고 있다고 느끼게 해줄 수 있습니다.

□ 화가 납니다　 □ 죄책감을 느낍니다　 ■ 행복합니다　 □ 외롭습니다　 □ 슬픕니다　 ■ 든든합니다　 □ 속상합니다

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이번 과정을 마쳤습니다!

잘하셨습니다!

iS u

p p

o rt-K

o re

a 치 매

돌 봄

자 를

위 한

교 육

및 지

원 지

침 서

1장. 즐거운 식사 시간 만들기

2장. 건강한 식사와 수분 섭취

3장. 배변 보조와 실금 관리

4장. 개인위생 관리

5장. 즐거운 하루 보내기

일상생활 돌보기

제4부

제4부. 일상생활 돌보기

4부. 일상생활 돌보기

116

1장. 즐거운 식사 시간 만들기

왜 중요한가요? 치매의 단계와 건강 상태에 따라, 식사하거나 음료를

마시는 데 어려움이 생길 수 있습니다.

어떤 도움이

되나요?

즐겁게 식사하는 방법과

탈수를 예방하는 방법을 배울 수 있습니다.

배우게 될 내용은

무엇인가요?

1. 식사를 더 즐겁게 하는 방법에는 무엇이 있을까요?

2. 좋은 식사 분위기를 만들기 위해 어떤 노력을 할 수

있을까요?

3. 건강 상태 중 어떤 요인이 음식물 섭취에 영향을 줄

수 있을까요?

4. 탈수를 예방하려면 어떤 방법들이 있을까요?

1장. 즐거운 식사 시간 만들기

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1. 식사를 더 즐겁게 하는 방법에는 무엇이 있을까요?

치매대상자가 식사 준비를 조금이라도 도울 수 있으면 스스로 할 수 있다는 기쁨에 자존감이 높아지고, 식사 시간이 더 즐거워질

수 있습니다.

사례를 살펴봅시다.

치매가 있는 박선휘 씨는 예전에는 오랫동안 가족들을 위해 요리해왔습니다.

하지만 최근 남편을 잃고, 아들 내외와 함께 살게 되었습니다.

이제는 며느리가 주로 식사를 준비하는데, 박선휘 씨는 매우 우울해 하며 식사 때마다 배가 고프지 않다고 말합니다.

저녁 식사도 가족들과 함께먹지 않고 혼자 먹는 일이 많아졌습니다.

확인하기 1. 더 즐겁게 식사하는 방법

박선휘 씨의 가족은 이 상황에 어떻게 대처할 수 있을까요?

적절하다고 생각하는 항목에 모두 표시해 보세요.

□ 저녁 식사를 방으로 가져다 줍니다.

□ 저녁 식사를 함께하자고 강요합니다.

□ 식사 준비와 뒷정리를 도울 수 있도록 합니다. 정답확인

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식사 시간 활동에 치매대상자가 함께 참여할 방법을 생각해보세요.

1. 활동하기

식사 시간 활동

식사 시간에 치매대상자가 함께하고 즐길 수 있는 활동을 아래에서 골라보세요.

식사 시간 활동 예시

함께 장보기 □ 아침, 점심, 저녁 식사로 먹을 음식과 마실 것을 선택하게

합니다.

식사 준비 □ 요리 재료를 준비하거나, 요리를 돕게 합니다.

상 차리기 □ 아침, 점심, 저녁 식사를 위한 식탁에 음식을 차리게 합니다.

식탁 정리 □ 식탁을 치우고 닦게 합니다.

설거지 □ 설거지 하게 합니다.

위의 활동 중 치매대상자가 할 수 있는 일이 있다면,

다음 식사 시간에 함께 하자고 부탁하거나 도와달라고 말해보세요.

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2. 좋은 식사 분위기를 만들기 위해 어떤 노력을 할 수 있을까요?

식사 시간은 가족이 치매대상자에게 관심과 사랑을 표현할 수 있는 소중한 기회입니다.

즐거운 식사 분위기는 치매 대상자가 음식을 더 잘 먹을 수 있게 해줍니다. 사례를 한번 살펴보겠습니다.

음식을 흘림

강화담 씨는 알츠하이머병을 진단받았고, 1년 전 아내가 세상을 떠난 후 큰아들과 함께 살고 있습니다.

4대가 함께 모여 식사하는 이 시간이 강화담 씨에게는 하루 중 가장 즐거운 시간입니다.

하지만 최근 들어 강화담 씨는 손이 떨리는 증상으로 인해 음식을 자주 엎지르거나, 식탁과 바닥에 흘리는 일이 잦아졌습니다.

확인하기 2. 좋은 식사 분위기 만들기

강화담 씨의 가족은 이 상황에 어떻게 대처할 수 있을까요?

적절하다고 생각하는 항목에 모두 표시해 보세요.

□ 아버지가 음식과 음료를 쉽게 드실 수 있도록 도움이 되는 식기류를 구매합니다.

□ 음식을 엎지르거나 흘리면 다른 가족이 신경 쓰일 수 있기 때문에, 아버지가 본인 방에서 혼자 식사하도록 별도의

식탁을 마련합니다.

□ 가족회의를 열어, 긍정적이고 기분 좋은 방법으로 식사를 할 수 있도록 함께 고민하자고 제안합니다.

□ 깨지지 않는 식기로 교체합니다. 정답확인

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3. 건강 상태 중 어떤 요인이 음식물 섭취에 영향을 줄 수 있을까요?

건강 상태는 먹고 마시는 능력에 영향을 줄 수 있습니다. 이와 같은 문제를 해결하기 위한 방법은 다음과 같습니다.

2. 활동하기

건강 상태 관찰될 수 있는 특이 사항 문제 해결에 도움이 될 만한 방법

식욕 저하

□ 음식을 먹고 싶지 않아 한다.

□ 소량의 음식만 먹는다.

□ 소량의 음식을 먹는 데도 시간이 오래

걸린다.

- 더 맛있게 만든다. 대상자가 좋아하는 다양한 맛,

냄새, 식감을 고려해 음식을 준비한다.

- 혼자 먹기보다는 가족과 함께 먹게 한다.

- 식사 시간에 좋아하는 음악을 틀어 놓는다.

- 낮동안 몸을 더 많이 움직이게 한다.

치통이 있음

□ 음식을 먹고 싶어 하지 않는다.

□ 안절부절 못한다.

□ 통증을 나타내는 표정을 짓는다.

- 통증이 있는지 물어본다.

- 통증 부위를 가리켜보라고 한다.

- 치아가 흔들리거나 입안에 궤양 등이 있는지

확인한다.

- 필요한 경우 치과 진료를 받게 한다.

틀니가 잘 맞지 않음

□ 음식을 먹고 싶어 하지 않는다.

□ 안절부절 못한다.

□ 통증을 나타내는 표정을 짓는다.

□ 틀니 착용을 거부한다.

□ 틀니를 바닥에 던진다.

- 치통에 대해서는 앞서의 내용을 참고한다.

- 틀니 상태가 양호한지 확인하고, 대상자에게 제대로

맞는지 살펴본다.

- 필요한 경우 치과 진료를 받게 한다.

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2. 활동하기

건강 상태 관찰될 수 있는 특이 사항 문제 해결에 도움이 될 만한 방법

몸의 통증

□ 음식물 섭취를 거부한다.

□ 안절부절 못한다.

□ 비정상적인 자세를 취한다.

□ 고통스러운 표정을 짓는다.

- 통증이 있는지 물어본다.

- 통증 부위를 직접 가리켜보라고 한다.

- 의사의 진료를 받게 한다.

7일 이상 배변을

하지 못한 경우

□ 딱딱하고 건조한 대변을 본다.

□ 배변에 어려움을 호소한다.

□ 배변 후 잔여감이 있다고 한다.

□ 불안해하거나 초조해 한다.

□ 복통을 호소한다.

□ 메스꺼움을 느끼고 구토를 한다.

- 의사의 진료를 받게 한다.

- 식단에 섬유질을 늘린다.

- 수분 섭취를 늘린다.

- 신체 활동량을 증가시킨다.

설사

□ 묽은 대변을 본다.

□ 배변 횟수가 증가한다.

□ 변실금 및 대변을 참기 어려워한다.

- 의사의 진료를 받게 한다.

약물 부작용

□ 메스꺼움, 구토, 설사, 변비를 경험한다.

□ 식사를 거부한다.

□ 소량의 음식만 먹는다

- 의사의 진료를 받게 한다.

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2. 활동하기

건강 상태 관찰될 수 있는 특이 사항 문제 해결에 도움이 될 만한 방법

먹거나 마시는 것을

잊어버림

□ 이미 식사했는데도 다음 식사가 언제인지 묻는다.

□ 이미 식사했는데 배가 고프다고 말한다.

- 규칙적으로 먹고 마시게 한다.

- 식사를 함께한다.

- 식사 사이에 간식을 제공한다.

우울감

□ 식사를 거부하거나 배가 고프지 않다고 말한다.

□ 소량의 음식을 먹는다.

□ 음식에 관심이 없다.

- 의사의 진료를 받게 한다.

체중 저하

□ 음식을 거의 먹지 않는다.

□ 적은 양의 음식을 먹는다.

□ 같은 양의 음식을 규칙적으로 먹지만 체중이

줄어든다.

- 음식 섭취량을 늘린다.

- 좋아하는 음식을 제공한다.

- 입맛이 없을 수 있으므로 입맛을

돋우는 음식을 제공한다.

- 의사의 진료를 받게 한다.

체중 증가

□ 음식을 많이 먹는다.

□ 먹었다는 사실을 잊어버리고 간식을 더 많이 먹으려

한다.

□ 음식에 집착한다.

- 식사를 함께한다.

- 한 번에 소량의 음식을 제공한다.

- 배부르다고 표현하면 그만 먹게 한다.

- 저칼로리 간식을 제공한다.

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4. 탈수 예방 방법

치매대상자는 탈수 위험이 더 큽니다. 그 이유는 다음과 같습니다.

• 자신에게 필요한 것을 표현하기 어려워서

• 갈증을 잘 느끼지 못해서

• 충분한 물이 제공되지 않아서

• 치매가 심해짐에 따라 음식을 삼키기 어려워서

하루에 물과 같은 수분을 8~10잔, 1500~2000mL정도 섭취하는 것이 권장됩니다.

여기서 말하는 음료에는 물, 과일 주스, 국 등이 포함되며, 차나 커피와 같은 카페인이 함유된 음료는 제외됩니다.

심한 탈수

한도진 씨는 알츠하이머병을 진단받았지만, 일상적인 식사와 음료 섭취는 아내의 도움 없이도 스스로 할 수 있었고 걷기를 즐겨

했습니다. 어느 무더운 오후, 아내는 남편이 매우 지친 모습으로 천천히 걷더니 바닥에 쓰러지는 장면을 목격했습니다. 그는

근처 병원 응급실로 옮겨졌고, 탈수 진단을 받았습니다. 병원에서 치료를 받고 난 후, 건강을 회복하여 다시 집으로 돌아올 수

있었습니다.

확인하기 3. 심한 탈수

한도진 씨의 가족은 이 상황에 어떻게 대처할 수 있을까요?

적절하다고 생각하는 항목에 모두 표시해 보세요.

□ 남편이 언제 물을 마실지 스스로 결정할 수 있도록 합니다.

□ 하루 동안 8~10잔의 수분을 섭취할 수 있도록 도와줍니다.

□ 실제로 물을 마시는 시간과 양을 기록합니다. 정답확인

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3. 활동하기

식사와 수분 섭취 시간표

아래 시간표는 치매대상자의 수분 섭취를 기억하도록 돕기 위한 것입니다.

가능한 치매대상자가 무엇을 마실지 선택할 기회를 제공하세요.

하루 중 시간 수분의 종류 (예: 물) 섭취량 (예: 3컵)

기상 - 점심 시간

점심 시간 - 저녁 시간

저녁 시간 - 취침 시간

기억하기

심장 질환 등으로 인해 수분 섭취가 제한되는 경우, 얼마나 마셔도 되는지 의료진의 지시에 따라야 합니다!

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지금까지의 내용을 정리해 봅시다.

• 치매대상자가 즐겁게 먹고 마실 수 있도록 격려하고 도와주는 것이 중요합니다.

• 치매대상자가 다양한 식사 준비 활동에 함께 참여하도록 하면, 식사시간이 더 즐거워지고 자존감과 성취감을 높일 수

있습니다.

• 음식 섭취에 도움이 되는 환경을 조성하면, 식사와 수분 섭취를 도울 수 있습니다.

• 건강 상태가 개선되면 좋은 식습관 유지에 도움이 되므로, 필요한 경우 의료진의 도움을 받는 것이 중요합니다.

• 탈수를 예방하기 위해서 물을 자주 마시도록 유도하고, 섭취한 음료의 양을 기록하며 지켜보는 것이 도움이 됩니다.

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확인하기 1. 더 즐겁게 식사하는 방법

박선휘 씨의 가족은 이 상황에 어떻게 대처할 수 있을까요?

Ｘ 저녁 식사를 방으로 가져다 줍니다.

이 방법은 도움이 되지 않습니다. 박선휘 씨는 가족들과 더 멀어졌다고 느낄 수 있으며, 자신이 환영 받지 못한다고 생각

할 수 있습니다. 남편과 사별 한 뒤 아들 집으로 이사 왔고, 이제는 예전처럼 요리하거나 집안일을 할 수 없어 위축되어

있을 수 있습니다.

Ｘ 저녁 식사를 함께하자고 강요합니다.

이 방법은 도움이 되지 않습니다. 박선휘 씨를 화나게 하거나 더 위축되게 할 수 있습니다.

Ｏ 식사 준비와 뒷정리를 도울 수 있도록 합니다.

이 방법은 도움이 될 수 있습니다. 박선휘 씨가 요리를 좋아한다는 것을 알고 있으므로, 여전히 할 수 있고 좋아하는

활동에 계속 참여하게 하는 것이 좋습니다.

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확인하기 2. 좋은 식사 분위기 만들기

강화담 씨의 가족은 이 상황에 어떻게 대처할 수 있을까요?

Ｏ 아버지가 음식과 음료를 쉽게 드실 수 있도록 도움이 되는 식기류를 구매합니다.

이 방법은 도움이 될 수 있습니다. 아들은 아버지가 예전에 사용하던 식기를 이용해 먹고 마시는 것이 이제는

어려워졌다는 것을 알고 있습니다. 따라서 적절한 식기류를 제공함으로써 이 문제를 해결할 수 있습니다.

Ｘ 음식을 엎지르거나 흘리면 다른 가족이 신경 쓰일 수 있기 때문에, 아버지가 본인 방에서 혼자 식사하도록 별도의

식탁을 마련합니다.

이 방법은 도움이 되지 않습니다. 따로 혼자 식사하게 되면 아버지는 우울하거나 화가 나 오히려 제대로 식사하지 못할

수도 있기 때문입니다.

Ｏ 가족회의를 열어, 긍정적이고 기분 좋은 방법으로 식사를 할 수 있도록 함께 고민하자고 제안합니다.

이 방법은 도움이 될 수 있습니다. 가족 모두가 긍정적이고 좋은 분위기에서 식사할 수 있도록 노력할 수 있기

때문입니다.

Ｏ 깨지지 않는 식기로 교체합니다.

이 방법은 도움이 될 수 있습니다. 식사 중 실수를 하더라도 안전사고를 예방할 수 있고, 스트레스 없이 편안하게

식사할 수 있어 강화담 씨의 자존감을 유지하는 데도 도움이 됩니다.

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확인하기 3. 심한 탈수

한도진 씨의 가족은 이 상황에 어떻게 대처할 수 있을까요?

Ｘ 남편이 언제 물을 마실지 스스로 결정할 수 있도록 합니다.

이 방법은 도움이 되지 않습니다. 남편의 자율성을 존중하는 것은 중요하지만, 치매로 인해 갈증을 느끼는 능력이

떨어지거나 물을 마셔야 한다는 사실을 기억하지 못할 수 있습니다. 따라서 스스로 알아서 마시게 두면, 다시 탈수가

생길 위험이 있습니다.

Ｏ 하루 동안 8~10잔의 수분을 섭취할 수 있도록 도와줍니다.

이 방법은 도움이 될 수 있습니다. 아내는 남편이 물 마시는 것을 잊어버릴지 모른다는 것을 염두에 두고, 매일 충분한

수분을 섭취할 수 있도록 도와줘야 합니다.

Ｏ 실제로 물을 마시는 시간과 양을 기록합니다.

이 방법은 도움이 될 수 있습니다. 아침부터 저녁까지 남편이 마신 물의 양을 기록해 두는 것이 좋습니다. 하지만 저녁

식사 후 물을 많이 마시면 밤에 화장실에 자주 갈 수 있으므로, 저녁에는 수분 섭취를 조절하는 것이 좋습니다.

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이번 과정을 마쳤습니다!

잘하셨습니다!

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2장. 건강한 식사와 수분 섭취

왜 중요한가요? 치매의 단계나 건강 상태는 식사와 수분 섭취에 여러 가지 영향을 미칠 수 있습니다.

어떤 도움이

되나요?

식습관을 개선하고, 체중 감소를 예방하는 데 도움이 되며, 안전하게 식사하고

충분한 수분을 섭취하는 방법을 배울 수 있습니다.

배우게 될 내용은

무엇인가요?

1. 식사 방법을 개선하고 체중 감소를 예방하려면 어떻게 해야 할까요?

2. 안전하게 식사하고, 흡인성 폐렴을 예방하려면 어떤 점에 주의해야 할까요?

2장. 건강한 식사와 수분 섭취

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1. 식사 방법을 개선하고 체중 감소를 예방하려면 어떻게 해야 할까요?

치매 말기에는 음식을 씹고 삼키는 과정이 어려워질 수 있습니다. 나이가 들거나 치매가 진행되면서 후각, 미각, 시각과 같은 감각

기능이 약해져, 건강에 부정적인 영향을 줄 수 있습니다. 또한, 기분이 우울하거나 식습관이 변하면 음식 섭취와 소화에 어려움을

겪을 수 있습니다.

사례를 살펴봅시다.

딸 김유담 씨는 9년 전 치매를 진단받은 어머니를 돌보고 있습니다. 최근 어머니는 낮잠을 자는 시간이 길어져, 식사 시간마다

어머니를 깨워 식사 하는 것이 점점 더 어려워졌습니다. 딸은 어머니가 배고프지 않다고 생각해 깨우지 않은 경우가 많아졌습니다.

하지만, 최근 건강검진에서 어머니의 체중이 지난 5주 동안 체중의 5%인 2.5kg이나 빠진 것을 알게 되었습니다.

확인하기 1. 식사 방법을 개선하고 체중 감소를 예방하기

어머니의 식사를 개선하기 위해 무엇을 할 수 있을까요?

적절하다고 생각하는 항목에 모두 표시해 보세요.

□ 깨어 있을 때 식사할 수 있도록 유연한 식사 계획을 세웁니다.

□ 무엇을 얼마나 자주 먹는지 기록합니다.

□ 좋아하는 음식을 먹을 수 있도록 돕습니다. 정답확인

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2. 안전하게 식사하고, 흡인성 폐렴을 예방하려면 어떤 점에 주의해야 할까요?

치매대상자는 다음과 같은 어려움을 경험할 수 있습니다.

• 먹을 수 있는 것과 없는 것을 구별하지 못할 수 있어, 배가 고플 때 먹으면 안 되는 것을 먹을 수 있습니다. 따라서, 먹을 수

없는 물건이나 위험한 화학 물질은 안전한 곳에 보관해야 합니다.

• 치매 말기에는 음식을 삼키는 것이 어려워질 수 있습니다. 음식을 잘못 삼켜 위가 아닌 폐로 들어가면, 흡인성 폐렴이 생길

수 있습니다. 이러한 감염은 매우 위험하고 생명에 위협을 줄 수 있으므로 이를 예방하려면, 섭취 방법과 음식물을 조절해야

합니다.

사례를 살펴봅시다.

김재온 씨는 10년 전 치매를 진단받았고, 현재 아내가 돌보고 있습니다. 최근 아내는 부엌과 욕실의 비누가 사라진 것을 알게

됐고, 남편이 식탁에 놓인 꽃을 먹고 있는 모습을 발견하게 됩니다. 그러던 중, 남편이 부엌에서 간장과 세제를 마시려는 것도

목격하게 됩니다.

확인하기 2. 먹을 수 없는 것

아내의 올바른 대처는 무엇일까요?

적절하다고 생각하는 항목에 모두 표시해 보세요.

□ 세제와 같은 가정용 화학 제품은 서랍 안에 두고 잠근 상태로 보관합니다.

□ 남편이 먹을 수 없는 물건을 먹으면 안 된다는 것을 배우도록, 손이 닿을 수 있는 곳에 일부러 먹지 못하는 물건을

그대로 둡니다.

정답확인

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사례를 살펴봅시다.

배인설 씨는 치매가 있으며, 침대에서 누워 지내고 있습니다. 남편은 아내가 안전하게 음식을 먹을 수 있도록 돕고 있습니다.

최근 들어 아내는 부드러운 음식을 삼키는 것도 어려워하고, 음식을 먹거나 마실 때 기침을 자주 하더니 결국 고열로 병원에

입원하게 되었습니다. 아내는 흡인성 폐렴을 진단받고 한 달간 치료받은 뒤 건강을 회복해 퇴원했습니다.

의사는 앞으로 흡인성 폐렴을 예방하기 위해, 건강에 좋은 부드러운 음식과 걸쭉한 음료를 섭취하라고 권유했습니다.

확인하기 3. 안전하게 식사할 수 있도록 돕기

남편은 아내를 어떻게 도울 수 있을까요?

적절하다고 생각하는 항목에 모두 표시해 보세요.

□ 아내를 위해 건강에 좋은 부드러운 음식과 걸쭉한 음료를 만드는 방법을 배웁니다.

□ 식사를 도울 때 아내가 어떤 자세로 앉아 있는지 주의를 기울이지 않습니다.

도움말

• 연하곤란은 치매대상자에게 흔히 나타나는 증상으로 음식을 삼키기 어려운 상태를 말합니다.

• 이로 인해 사레가 자주 들리거나, 기침·체중 감소가 나타날 수 있으며 심하면 흡인성 폐렴같은 합병증으로 이어질 수 있습니다.

• 음식을 부드럽게 만들거나(믹서기 사용), 연하 보조제를 넣어 걸쭉하게 만들어 삼키기 쉽게 할 수 있습니다.

• 연하 보조제를 사용하거나 증상이 심할 때는 반드시 의료진과 상의하세요.

정답확인

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지금까지의 내용을 정리해 봅시다.

• 영양 상태를 개선하기 위해서는 적절한 식사 방법을 실천하는 것이 중요합니다.

• 치매대상자는 먹을 수 없는 물건이나 가정용 화학 물질을 구분하지 못할 수 있으므로, 이러한 물건들은 안전한 장소에

보관해야 합니다.

• 흡인성 폐렴을 예방하기 위해서는 음식과 음료의 질감을 조절하고, 음식을 먹을 때 똑바로 앉는 자세를 유지하는 것이

중요합니다.

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2장. 건강한 식사와 수분 섭취 (해답)

확인하기 1. 식사 방법을 개선하고 체중 감소를 예방하기

어머니의 식사를 개선하기 위해 무엇을 할 수 있을까요?

Ｏ 깨어 있을 때 식사할 수 있도록 유연한 식사 계획을 세웁니다.

이 방법은 도움이 될 수 있습니다. 치매 말기에 접어든 사람들은 더 많은 휴식이 필요하므로 식사 시간 조정이 도움이

될 수 있습니다. 기존 식사 시간에 잠을 자고 있다면, 식사 계획을 유연하게 바꾸는 것이 좋습니다.

Ｏ 무엇을 얼마나 자주 먹는지 기록합니다.

이 방법은 도움이 될 수 있습니다. 치매대상자가 무엇을 먹었는지 기록하면 언제 어떤 음식을 더 섭취해야 하는지 잘 알

수 있습니다.

Ｏ 좋아하는 음식을 먹을 수 있도록 돕습니다.

이 방법은 도움이 될 수 있습니다. 어머니가 치매 진단 전에 어떤 음식을 즐겨 먹었고, 지금은 어떤 음식을 좋아하는지

파악하면 도움이 될 수 있습니다.

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확인하기 2. 먹을 수 없는 것

아내의 올바른 대처는 무엇일까요?

Ｏ 세제와 같은 가정용 화학 제품은 서랍 안에 두고 잠근 상태로 보관합니다.

이 방법은 도움이 될 수 있습니다. 위험한 물건들을 멀리 치워 놓으면 치매대상자의 보호에 도움이 됩니다.

Ｘ 남편이 먹을 수 없는 물건을 먹으면 안 된다는 것을 배우도록, 손이 닿을 수 있는 곳에 일부러 먹지 못하는 물건을

그대로 둡니다.

이 방법은 도움이 되지 않습니다. 치매 말기에는 먹을 수 있는 것과 없는 것을 구별하지 못할 수 있습니다.

따라서, 위험한 물건을 멀리 치워 놓는 것이 매우 중요합니다.

확인하기 3. 안전하게 식사할 수 있도록 돕기

남편은 아내를 어떻게 도울 수 있을까요?

Ｏ 아내를 위해 건강에 좋은 부드러운 음식과 걸쭉한 음료를 만드는 방법을 배웁니다.

이 방법은 도움이 될 수 있습니다. 건강에 좋은 부드러운 음식과 걸쭉한 음료는 치매 말기 대상자가 보다 쉽게 스스로

먹고 마시는 것을 도와줍니다. 또한 치매대상자의 건강한 체중 유지에도 도움이 됩니다.

Ｘ 식사를 도울 때 아내가 어떤 자세로 앉아 있는지 주의를 기울이지 않습니다.

이 방법은 도움이 되지 않습니다. 아내를 똑바로 앉혀야 음식을 안전하게 삼킬 수 있고, 흡인성 폐렴을 예방할 수

있습니다.

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이번 과정을 마쳤습니다!

잘하셨습니다!

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3장. 배변 보조와 실금 관리

왜 중요한가요? 배변이 잘되지 않거나 실금이 생기면 감염이나 건강

문제가 발생할 위험이 커집니다.

또한, 자존감이 떨어지거나 사회 활동을 못 하게 만들

수 있습니다.

어떤 도움이

되나요?

화장실을 사용하도록 돕고, 배변과 실금을 적절히

관리하는 데 도움이 됩니다.

배우게 될 내용은

무엇인가요?

1. 바닥에 소변을 보거나, 소변을 참기 어려운 경우 어떤 방법으로 도울 수 있을까요?

2. 실금 보조 기구는 어떻게 사용하면 좋을까요?

1. 바닥에 소변을 보거나 소변을 참기 어려운 경우 어떤 방법으로 도울 수 있을까요?

바닥에 소변을 보는 경우 치매가 화장실 위치를 기억하거나 변기를 인식하고 사용하는 능력에 영향을 주어 나타날 수 있습니다.

이러한 행동을 탓하거나 처벌해서는 안 됩니다. 부정적인 반응은 치매대상자 뿐 아니라 돌봄자 자신에게도 스트레스를 유발할 수

있습니다.이럴 때는, 집안 환경에 변화를 주어 화장실을 더 쉽게 찾고 이용할 수 있도록 도울 수 있습니다.

3장. 배변 보조와 실금 관리

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사례를 살펴봅시다.

지하온 씨는 몇 년 전부터 혈관성 치매가 있는 남편을 돌보고 있습니다.

남편은 한동안 도움 없이 혼자 화장실에 갈 수 있었지만, 최근 변기 옆 바닥에 소변을 보기 시작했습니다.

확인하기 1. 바닥에 소변보는 일 예방하기

남편의 행동에 대해 어떻게 대처해야 할까요?

적절하다고 생각하는 항목에 모두 표시해 보세요.

□ 화장실 문에 변기 그림을 붙이거나, 변기 시트를 눈에 띄는 색상으로 바꾸고, 남편의 바지를 벨트 없이 입고 벗기 쉬운

옷으로 바꾸는 등 환경이나 복장에 간단한 변화를 줍니다.

□ 남편의 실수를 지적하거나, 평소 좋아하던 산책을 금지합니다.

기억하기

화장실 사용에 어려움을 겪을 때 도움이 되는 방법입니다.

• 화장실 문에 변기 그림을 붙여 화장실을 쉽게 찾을 수 있도록 도와줍니다.

• 화장실을 찾지 못하는 경우, 화장실로 가는 길을 직접 알려줍니다.

• 침실과 화장실 사이 복도에는 적절한 야간 조명등을 설치합니다.

• 변기 시트를 눈에 잘 띄는 색상으로 바꿉니다.

• 대상자의 바지를 벗기 쉬운 바지로 바꿉니다.

• 화장실 사용법을 잊어버렸다면, 단계별로 차근차근 알려줍니다.

정답확인

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바닥에 소변을 보거나 소변을 참지 못하는 데 영향을 미칠 수 있는 요인은 무엇인가요?

영향을 미칠 수 있는 요인 해결 방법

집 안에서 화장실까지의 거리가 멂

- 화장실까지 안내한다.

- 밤에는 침대 옆에 간이 변기를 준비한다.

- 야간 조명을 설치한다.

화장실을 찾기 어려워함 - 화장실 문에 변기 사진을 붙인다.

변기 시트의 색상이 잘 구분되지 않음 - 변기 시트를 눈에 잘 띄는 색상으로 교체하여 잘 구분되도록 한다.

화장실이나 복도에 조명이 충분하지 않음 - 화장실이나 복도에 적절한 조명을 설치한다.

- 화장실이나 복도 바닥에 동작 감지 센서를 설치한다.

보행기나 휠체어가 지나갈 수 없는 좁은 화장실 문 - 보행기나 휠체어가 지나갈 수 있도록 화장실 문을 개조한다.

시각적 장애 - 낮에는 직접 화장실까지 안내해준다.

- 밤에는 침대 옆에 간이변기를 준비한다.

바지를 입고 벗을 수 없음 - 쉽게 입고 벗을 수 있는 바지로 바꿔준다.

- 화장실 사용 후 바지를 올릴 수 있도록 도와준다.

화장실에서 무엇을 해야 하는지 잊어버림 - 화장실에서 해야 할 활동을 상기시킨다.

- 화장실 사용 방법을 단계별로 안내하는 그림이나 문구를 붙여둔다.

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공공장소에서 소변을 보는 일

치매는 화장실에 가고 싶다는 욕구를 표현하는 능력뿐만 아니라, 공공장소에서의 적절한 행동을 판단하는 능력에도 영향을

줍니다. 따라서 매일 일정한 시간에 화장실에 갈 수 있도록 하면 요실금 등의 실수를 줄이는 데 도움이 될 수 있습니다.

치매가 있기 전에 얼마나 화장실을 자주 사용했는지 알아두는 것도 도움이 될 수 있습니다.

또한, 초조해 하거나 불안해하거나 안절부절못하는 행동은 화장실에 가고 싶다는 신호일 수 있으니 주의해서 살펴야 합니다.

사례를 살펴봅시다.

조서안 씨는 5년 전 치매 진단을 받은 어머니를 돌보고 있습니다. 어머니는 사람들을 만나는 것을 좋아해서, 딸은 어머니와 함께 집

근처에서 쇼핑하는 시간을 가지곤 합니다. 그런데 최근 들어 어머니가 낮에 소변을 잘 참지 못한다는 것을 알게 되었습니다.

확인하기 2. 소변 조절 능력 감소에 대처하기

딸은 어떻게 대처해야 할까요?

적절하다고 생각하는 항목에 모두 표시해 보세요.

□ 난처한 상황이기 때문에, 어머니를 모시고 쇼핑하는 것을 그만둡니다.

□ 쇼핑하러 가기 전에 어머니가 화장실에 다녀오도록 합니다. 정답확인

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배설 활동을 보다 잘 조절할 수 있도록 돕기 위해, 화장실 사용 일지를 작성하는 것이 도움이 될 수 있습니다.

화장실 사용 일지 날짜:

시간 화장실에 간 횟수 배뇨나 배변을 실수한 횟수 배뇨나 배변 실수를 한 원인

06:00 - 09:00

09:00 - 12:00

12:00 - 15:00

15:00 - 18:00

18:00 - 21:00

21:00 - 00:00

00:00 - 03:00

03:00 - 06:00

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2. 실금 보조 기구 사용 방법

치매 말기에는 소변이나 대변을 조절하는 능력이 저하될 수 있습니다. 이럴 때는 실금 관리를 위한 실금 패드나 보조 기구가 도움이

될 수 있으나 사용하기 전, 의료진과 상담하여 실금의 원인을 확인하고 치료할 수 있는지를 먼저 알아보는 것이 중요합니다.

기억하기

• 일회용 또는 세척 가능한 패드, 보조 기구 등이 다양하게 있습니다.

• 제품을 선택할 때는 비용, 효과, 착용감, 편리성 등을 생각해야 합니다.

• 병상에 누워지내는 남성의 경우, 소변기 사용이 더 편리할 수 있습니다.

• 최근에는 소변이 역류해 새지 않게 만들어진 소변기들도 소개되고 있습니다.

• 거주지의 치매안심센터 등과 같은 지원기관에서 실금 패드 등 조호물품을 신청할 수 있는지 상담해 보는 것이 좋습니다.

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사례를 살펴봅시다.

송단희 씨는 알츠하이머병 말기인 시어머니를 돌보고 있습니다. 시어머니는 소변이나 대변 실수가 잦았고, 의사는 며느리에게

시어머니의 실금 패드 사용을 권했습니다.

하지만 이후 며느리는 여러 가지 문제에 직면하게 되었습니다.

• 시어머니가 실금 패드를 자꾸 빼서 바닥에 던지는 행동을 반복합니다.

• 실금 패드를 사용하고 있음에도 불구하고, 바지가 젖어 있는 경우가 있습니다.

• 시어머니의 생식기 부위에 피부 문제가 생겼습니다.

확인하기 3. 개인 위생용품 사용하기

며느리는 어떻게 대처해야 할까요?

적절하다고 생각하는 답에 모두 표시해 보세요.

□ 실금 패드의 착용을 강요합니다.

□ 화장실을 스스로 가지 않을 경우, 정해진 시간에 화장실을 가도록 상기시킵니다.

정답확인

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도움말

다음은 실금 관리를 위한 몇 가지 방법입니다.

문제 가능한 원인 해결 방법

실금 패드를 계속

벗어 바닥에 던짐

- 실금 패드 착용 시 불편함을 느낀다.

- 실금 패드 크기가 안 맞는다.

- 실금 패드가 젖어 교체해야 한다.

- 실금 패드 크기가 적절한지 확인한다.

- 실금 패드를 제시간에 교체한다.

- 이러한 행동이 지속되면, 의료진과 상담한다.

실금 패드를

사용하는 동안에도

바지가 젖어 있음

- 실금 패드 크기가 안 맞는다.

- 정해진 시간에 화장실을 사용하지 않고 있다.

- 크기와 종류가 올바른 실금 패드를 사용한다.

- 실금 패드 사용 시간을 줄이기 위해 정해진

시간에 맞춰 화장실에 간다.

생식기 주위의

피부가 아프거나

자극을 받음

- 실금 패드는 피부에 손상을 유발할 수 있다.

- 실금 패드 크기가 적합하지 않거나 패드를 제때

교체하지 않으면 피부 감염이 생길 수 있다.

- 크기와 종류가 적절한 실금 패드를 사용한다.

- 젖거나 더러워진 실금 패드를 자주 교체하고,

생식기 주위를 위생적으로 관리한다.

- 건강한 피부를 유지하기 위해 보습 크림이나

로션을 바른다.

열이 나거나 아프고,

소변에서 악취가 남

- 요로 감염은 실금이나 잘못된 생식기 위생 등

여러 요인에 의해 유발된다.

- 의사의 진료를 받는다.

- 수분 제한이 있는 경우를 제외하고는 하루에

6~8잔의 물이나 음료를 섭취한다.

- 생식기 부위를 항상 청결하게 유지한다.

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지금까지의 내용을 정리해 봅시다.

• 바닥에 소변을 보는 등의 실수를 하더라도 비난하지 않습니다.

• 소변이나 대변 실수를 줄이기 위해 집 안 환경을 바꿉니다. 예를 들어 화장실 문에 변기 그림을 붙여 화장실 위치를 쉽게

알아볼 수 있게 합니다.

• 배설 실수를 줄이기 위해 정해진 시간에 화장실에 갈 수 있도록 합니다.

• 화장실에 가는 시간은 치매 전 평소에 화장실을 이용하던 시간을 참고해 정하는 것이 좋습니다.

• 이러한 방법으로도 해결되지 않는다면, 실금 보조 기구나 실금 패드를 사용하는 것도 도움이 될 수 있습니다.

• 실금 패드나 보조 기구를 잘못 사용하면 피부에 자극이나 손상이 생길 수 있으니 주의해야 합니다.

• 요로감염의 위험을 줄이기 위해 생식기 위생을 잘 관리해야 합니다.

• 수분 섭취가 제한되지 않는다면 요로감염의 예방을 위해 하루에 6~8잔의 수분을 섭취하도록 권장합니다.

기억하기

• 실금과 관련된 상황에서 돌봄자의 감정을 조절하는 방법에 대해 자세히 알고 싶다면 3부 3장 <다른 관점으로 생각하기>를

참고하세요.

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확인하기 1. 바닥에 소변보는 일 예방하기

남편의 행동에 대해 어떻게 대처해야 할까요?

Ｏ 화장실 문에 변기 그림을 붙이거나, 변기 시트를 눈에 띄는 색상으로 바꾸고, 남편의 바지를 벨트 없이 입고 벗기 쉬운

옷으로 바꾸는 등 환경이나 복장에 간단한 변화를 줍니다.

이 방법은 도움이 될 수 있습니다. 치매대상자는 화장실을 찾거나 사용하는 데 어려움을 겪을 수 있기 때문에 이러한

변화는 남편에게 도움이 될 수 있습니다.

Ｘ 남편의 실수를 지적하거나, 평소 좋아하던 산책을 금지합니다.

이 방법은 도움이 되지 않습니다. 이런 식으로 비난하면, 치매대상자를 부끄럽고 당황스럽게 만들어 화가 날 수

있습니다.

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확인하기 2. 소변 조절 능력 감소에 대처하기

딸은 어떻게 대처해야 할까요?

Ｘ 난처한 상황이기 때문에, 어머니를 모시고 쇼핑하는 것을 그만둡니다.

이 방법은 도움이 되지 않습니다. 어머니가 좋아하는 활동을 하지 못하기 때문입니다.

Ｏ 쇼핑하러 가기 전에 어머니가 화장실에 다녀오도록 합니다.

이 방법은 도움이 될 수 있습니다. 어머니가 소변 조절 능력을 잃지 않도록 도와줄 수 있는 좋은 방법입니다.

확인하기 3. 개인 위생용품 사용하기

며느리는 어떻게 대처해야 할까요?

Ｘ 실금 패드의 착용을 강요합니다.

이 방법은 도움이 되지 않습니다. 치매대상자가 패드에 불편함을 느끼는 이유를 먼저 확인하는 것이 중요합니다. 패드

크기가 맞지 않는지, 패드가 젖어서 교체해야 하는지를 확인합니다.

Ｏ 화장실을 스스로 가지 않을 경우, 정해진 시간에 화장실을 가도록 상기시킵니다.

이 방법은 도움이 될 수 있습니다. 정해진 시간에 화장실을 가는 것은 실금 예방에 도움이 되고, 패드 사용을 줄이는 데

도움이 될 수 있습니다.

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이번 과정을 마쳤습니다!

잘하셨습니다!

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왜 중요한가요? 치매는 양치질, 샤워, 목욕과 같은 개인위생 관리에 영향을 줄 수 있습니다. 개인위생 관리를

잘하지 못하면 감염과 같은 건강 문제로 이어질 수 있으며, 자신감이 떨어져 다른 사람들과

어울리기 어려워지는 문제도 발생할 수 있습니다.

어떤 도움이

되나요?

개인위생과 관련된 문제를 이해하고,

이를 보다 효과적으로 관리하는 데 도움이 될 수 있습니다.

배우게 될 내용은

무엇인가요?

1. 개인위생 관리를 보다 더 쉽게 할 수 있도록 환경을 어떻게 바꿀 수 있을까요?

2. 옷 입기, 구강 관리, 목욕 등 일상적인 위생관리를 돕는 구체적인 방법은 무엇일까요?

1. 개인위생 관리를 보다 더 쉽게 할 수 있도록 환경을 어떻게 바꿀 수 있을까요?

치매대상자가 개인위생 관리를 어려워하는 데는 여러 가지 이유가 있습니다.

그 중 하나는 필요한 물건을 제 때 찾지 못하는 경우입니다.

예를 들어, 기억력 저하로 인해 칫솔과 치약을 찾지 못하면 양치질을 하지 못하게 될 수 있습니다.

이러한 문제를 해결하기 위해서는, 필요한 물건을 보다 쉽게 찾을 수 있도록 주변 환경을 바꿔볼 필요가 있습니다.

4장. 개인위생 관리

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사례를 살펴봅시다.

임윤재 씨의 아내는 알츠하이머병을 진단받았지만, 그동안 가족의 도움 없이 자신을 돌볼 수 있었습니다. 그런데 최근에는 평소에

하던 세면, 머리 빗기, 화장 등을 하지 않는 것은 물론이고, 잠옷을 입은 채 아침 식탁에 앉아 있는 모습이 발견되었습니다.

아내가 아침 식사 전에 더 이상 개인위생을 신경 쓰지 않는 이유는 다양할 수 있습니다. 그 중 하나는 우울하기 때문일 수

있습니다. 우울감에 대한 자세한 내용은 5부 4장 <우울, 불안, 또는 무감동>에서 확인할 수 있습니다.

확인하기 1. 개인 위생 관리하기

남편 임윤재 씨의 올바른 대처는 무엇일까요?

적절하다고 생각하는 항목에 모두 표시해 보세요.

□ 개인위생 용품을 사용 순서대로 배치하고, 아내가 읽기 쉽도록 큰 글씨로 다양한 색상의 이름표를 붙입니다.

□ 며느리에게 식탁 앞에 있는 아내를 화장실로 데리고 가서, 씻고 옷을 갈아입는 것을 도와달라고 부탁합니다.

기억하기

다음은 치매대상자가 물건이나 장소를 쉽게 찾고 스스로 개인 위생을 관리할 수 있도록 돕는 방법입니다.

• 화장실 찾기: 화장실 문에 사진이나 이름을 붙이거나, 화장실로 직접 안내합니다.

• 개인위생용품 찾기: 욕실 안의 물건이 눈에 잘 띄게 정리하고, 칫솔이나 비누에 이름표나 그림을 붙입니다. 눈에 띄는 색을

사용하면 도움이 될 수 있습니다.

• 불 끄고 켜기: 전등 스위치의 불을 켜고 끄는 방향에 색깔로 표시를 해 켜거나 끄도록 알려주는 것이 좋습니다. 도움이

필요한 경우 옆에서 도와주는 것도 좋은 방법입니다.

정답확인

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2. 옷 입기, 구강 관리, 목욕 등 일상적인 위생관리를 돕는 구체적인 방법은 무엇일까요?

치매대상자는 적절한 옷을 선택하거나 입는 데 어려움이 있을 수 있습니다.

치매로 인해 옷을 고르고 입는 능력이 저하될 수 있지만 가능한 한 계속해서 치매대상자가

스스로 옷을 고를 수 있도록 돕고, 스스로 할 수 있는 일은 하도록 하는 것이 좋습니다.

치매대상자가 할 수 있는 일을 대신해주는 것은 바람직하지 않습니다.

사례를 살펴봅시다.

황도연 씨는 알츠하이머병 진단을 받은 남편을 돌보고 있습니다. 예전에는 남편이 다음날 스스로 입을 옷을 정리하곤 했지만,

최근 들어 이를 잊어버리고 매일 같은 옷을 입는 일이 반복되고 있습니다. 또한, 셔츠 단추를 몇 개 잠그지 않거나 벨트를 하지 않고

신발 끈을 묶지 않은 채 나가려는 모습도 자주 보입니다.

확인하기 2. 옷 입기

아내의 올바른 대처는 무엇일까요?

적절하다고 생각하는 항목에 모두 표시해 보세요.

□ 지저분하면 안 된다고 말하고, 남편을 위해 옷을 골라 입혀줍니다.

□ 저녁에 옷을 골라 놓아야 한다고 상기시키고, 벨트가 필요 없는 바지와 끈이 없는 신발을 착용하도록 격려합니다.

정답확인

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양치질의 어려움

치매는 기억력뿐만 아니라, 구강 관리에 필요한 준비성, 조절 능력, 집중력에도 영향을 미칩니다.

구강 관리를 제대로 하지 않으면 식욕이 저하되거나, 구취가 생기고, 치아와 잇몸이 감염될 수 있습니다.

구강 관리를 돕는 목적은 치매대상자가 아직 스스로 할 수 있는 일을 최대한 잘할 수 있게 하는 것입니다.

사례를 살펴봅시다.

아내는 알츠하이머병을 진단받은 남편을 돌보고 있습니다. 남편은 원래 도움 없이 양치질을 잘했지만, 최근에는 물과 치약을

세면대와 바닥에 흘리는 일이 많아졌습니다. 양치질이 서툴러졌을 뿐만 아니라 틀니도 스스로 끼우지 못하기 시작했습니다.

확인하기 3. 구강관리 촉진

아내의 올바른 대처는 무엇일까요?

적절하다고 생각하는 항목에 모두 표시해 보세요.

□ 남편에게 묻지 않고 남편의 입에 틀니를 끼웁니다.

□ 이 닦는 방법을 단계별로 알려주고, 남편이 잘할 때마다 칭찬합니다. 정답확인

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1. 활동하기

아래 구강 관리 단계에서, 당신이 돌보는 사람에게 도움이 필요한 단계를 표시해 보세요.

□ 칫솔에 치약 바르기

□ 치아와 잇몸을 깨끗이 양치질하기

□ 입안 헹구기

□ 매일 치실이나 이쑤시개를 사용하여 치아 사이 깨끗이 하기

□ 필요할 때, 입술에 수분을 공급하기 위해 입술보호제 바르기

□ 구강 감염 또는 치통 증상 확인하기

□ 틀니 빼기. 세척, 보관하기

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개인위생 관리 및 목욕의 어려움

치매는 머리 감기, 샤워, 목욕을 하는 능력에도 영향을 줄 수 있습니다. 치매대상자는 개인위생에

도움을 받는 것이 자신의 사생활을 침해하고 안전에 위협이 된다고 생각해 도움을 거부할 수

있습니다.

사례를 살펴봅시다.

김정관 씨는 알츠하이머병을 진단받은 후 아내의 도움을 받고 있습니다. 하지만 아내도 고령이라

더 이상 남편의 목욕을 도와주기 어려워 사위 셋이 서로 번갈아 목욕을 돕기로 했습니다. 어느

날 목욕을 도와주려 온 맏사위가 친절하게 말하며 장인을 안심시켰습니다. 그러나 사위가 장인을

화장실로 데려가 옷을 벗기려 하자, 김정관 씨는 갑자기 사위를 밀쳐내고 소리를 지르며 “저리 가”라고 외쳤습니다.

확인하기 4. 목욕 보조에 대한 저항

아내와 사위의 올바른 대처 방식은 무엇일까요?

적절하다고 생각하는 항목에 모두 표시해 보세요.

□ 장인이 사위를 낯선 사람으로 생각하고 있다는 것을 알아차리고, 사위가 목욕시키는 동안 아내가 함께 옆에 있어줍니다.

□ 가족의 도움에 감사해야 한다고 말하고, 계속 이런 행동을 하면 요양시설로 보내겠다고 합니다.

정답확인

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치매대상자를 돌볼 때는 가능한 한 대상자의 선호를 물어보고, 그들의 선택을 존중해야 합니다.

대상자가 안전함과 편안함을 느낄 수 있도록 계속 안심시켜주세요.

치매대상자는 개인위생 동안에 종종 거부 반응을 보이거나 공격적으로 변할 수 있습니다.

공격성을 예방하거나 대처하는 자세한 방법은 5부 3장 <공격적인 행동>을 참고하세요.

기억하기

다음은 치매대상자의 목욕을 도울 때 유용한 방법입니다.

• 하루 중 대상자가 목욕이나 샤워를 하기 좋아하는 시간을 파악하세요.

• 서서 하는 샤워나 욕조에서 하는 목욕 대신 샤워타월을 이용하여 닦아주는 목욕도 도움이 될 수도 있습니다.

• 욕조는 미끄러질 위험이 있고, 돌봄자가 대상자를 욕조에서 들어올리기 어려울 수 있습니다.

• 샤워기나 욕조를 사용하는 경우 낙상 방지를 위해 미끄럼 방지 욕조나 매트를 사용합니다.

• 욕실용 손잡이나 샤워 의자 같은 도구가 도움이 됩니다.

• 물을 무서워하는 대상자에게는 물의 세기를 줄여 진행하는 것이 도움이 됩니다.

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2. 활동하기

당신이 돌보는 치매대상자가 도움이 필요하다고 생각되는 개인위생 활동에 표시해 보세요.

각 활동을 할 때, 단계별로 차근차근 설명하며 도움을 주세요.

□ 바닥에 미끄럼 방지 매트 깔기

□ 샤워시 물 틀기, 물 온도 조절, 입욕 준비하기

□ 샤워·목욕 전 옷벗기

□ 샤워·목욕 중 머리/몸 씻기

□ 생식기 부위 씻기 및 말리기

□ 발 씻기 및 말리기

□ 피부 문제 확인하기

□ 샤워 후 몸 말리기

□ 수건을 이용하여 머리카락·몸 닦기

□ 피부에 수분을 공급하기 위해 보디로션 바르기

□ 세안 및 말리기

□ 손 씻기 및 말리기

□ 면도하기

□ 헤어 드라이어 사용하기

□ 머리 빗질하기

□ 샤워·목욕 준비하기

□ 손톱·발톱 깎기

□ 화장하기

□ 잠옷에서 일상복으로 갈아입기

□ 옷 입기·벗기

□ 샤워·목욕 후 옷 입기

□ 일상복 고르기

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지금까지의 내용을 정리해 봅시다.

• 치매대상자가 가지고 있는 능력을 최대한 활용하여 가능한 한 오랫동안 개인위생과 구강 관리에 스스로 참여할 수 있게

합니다.

• 간단한 지시를 주거나, 다양한 옷 중에 고르게 하거나, 개인위생을 할 때 앉을 수 있는 의자를 제공하는 등 환경을

조정하는 것도 좋은 방법입니다.

• “오늘 어떤 옷을 입고 싶으세요?”와 같은 질문을 통해 일상적인 의사결정에 참여하도록 격려합니다.

• 물품 준비나 씻기 등 개인위생 관리에 충분한 도움이 없으면, 대상자가 불안해하거나 공격적인 반응을 보일 수 있습니다.

• 대상자의 감정에 공감하고, 목욕이나 샤워를 거부하는 이유를 이해하려 노력합니다.

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확인하기 1. 개인 위생 관리하기

남편 임윤재 씨의 올바른 대처는 무엇일까요?

Ｏ 개인위생 용품을 사용 순서대로 배치하고, 아내가 읽기 쉽도록 큰 글씨로 다양한 색상의 이름표를 붙입니다.

이 방법은 도움이 될 수 있습니다. 치매대상자는 물건을 찾는 능력이 떨어져 있을 수 있으므로 ‘물건을 찾기 쉬운’

환경을 만드는 것이 도움이 됩니다.

Ｘ 며느리에게 식탁 앞에 있는 아내를 화장실로 데리고 가서, 씻고 옷을 갈아입는 것을 도와달라고 부탁합니다.

이 방법은 도움이 되지 않습니다. 남편은 아내가 아침 식사 전에 더 이상 개인 위생을 하지 않는 이유를 먼저 알아내야

합니다. 또한 아내에게 며느리의 도움을 원하는지 물어볼 필요가 있습니다. 아내의 의사를 묻지 않고 도움을 주면,

아내의 기분이 상할 수 있습니다.

확인하기 2. 옷 입기

아내의 올바른 대처는 무엇일까요?

Ｘ 지저분하면 안 된다고 말하고, 남편을 위해 옷을 골라 입혀줍니다.

이 방법은 도움이 되지 않습니다. 옷 입기를 어려워하는 것이 남편의 잘못은 아닙니다. 조금만 도와주면, 아직 스스로

옷을 입을 수 있는 능력이 남아 있을 수 있습니다.

Ｏ 저녁에 옷을 골라 놓아야 한다고 상기시키고, 벨트가 필요 없는 바지와 끈이 없는 신발을 착용하도록 격려합니다.

이 방법은 도움이 될 수 있습니다. 남편이 스스로 옷을 입도록 도와주어 남편의 자존감을 높일 수 있습니다.

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확인하기 3. 구강관리 촉진

아내의 올바른 대처는 무엇일까요?

Ｘ 남편에게 묻지 않고 남편의 입에 틀니를 끼웁니다.

이 방법은 도움이 되지 않습니다. 남편의 허락을 구하지 않은 채 돌봄을 제공하면 오히려 불쾌감을 유발할 수 있습니다.

Ｏ 이 닦는 방법을 단계별로 알려주고, 남편이 잘할 때마다 칭찬합니다.

이 방법은 도움이 될 수 있습니다. 이를 통해 남편의 독립심을 유지시키고, 자존감을 높여줄 수 있습니다.

확인하기 4. 목욕 보조에 대한 저항

아내와 사위의 올바른 대처 방식은 무엇일까요?

Ｏ 장인이 사위를 낯선 사람으로 생각하고 있다는 것을 알아차리고, 사위가 목욕시키는 동안 아내가 함께 옆에 있어줍니다.

이 방법은 도움이 될 수 있습니다. 치매대상자는 이전에 알던 사람도 더 이상 알아보지 못할 수 있어, 사람들에게

친숙해질 수 있는 충분한 시간을 주는 것이 매우 중요합니다.

Ｘ 가족의 도움에 감사해야 한다고 말하고, 계속 이런 행동을 하면 요양시설로 보내겠다고 합니다.

이 방법은 도움이 되지 않습니다. 이런 말로 위협하는 것은 상황 해결에 도움이 되지 않고, 치매대상자를 위축시키고

좌절하게 만들 수 있습니다.

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이번 과정을 마쳤습니다!

잘하셨습니다!

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왜 중요한가요? 치매대상자가 즐거운 하루를 보내기 위해서는 익숙한 일상과 활동을 유지하는 것이 중요합니다.

어떤 도움이

되나요?

치매대상자의 인지 및 신체 기능이 변함에 따라, 일상과 활동을 어떻게 바꿔야 하는지 배우게 됩니다.

배우게 될 내용은

무엇인가요?

1. 치매대상자의 하루 일과를 어떻게 계획하면 좋을까요?

2. 치매대상자의 능력 변화에 맞게 일상활동을 어떻게 조정해야 할까요?

1. 치매대상자의 하루일과를 어떻게 계획하면 좋을까요?

치매대상자가 자신이 하고 싶은 일을 스스로 할 수 있도록 돕는 환경을 조성해야 합니다.

돌봄자에게도 도움이 되는 환경을 마련하는 것이 중요합니다.

치매대상자가 익숙한 일상과 활동을 유지하는 것이 중요하며, 대상자의 능력이 변화함에 따라 활동을 조정하는 것도 필요합니다.

5장. 즐거운 하루 보내기

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일상이란 무엇인가요?

일상이란 거의 매일 반복하는 일을 의미합니다.

치매대상자가 이러한 일상을 가능한 한 오래 유지할 수 있도록 돕는 것이 중요합니다. 익숙한 일상이 지속되면 대상자가

안심하고, 스트레스를 덜 느낄 수 있습니다.

우선, 대상자의 평소 일상을 파악해야 합니다. 예를 들어, 저녁에 특별한 일과가 없다면, 차 한 잔을 마시거나, 편안한 음악을

듣거나, 기도 하기와 같은 활동을 새로운 일과로 만들어 규칙적으로 반복하는 것이 좋습니다.

또한, 아침에 일어난 직후, 점심시간, 오후에 무엇을 할 지와 같이 하루 동안의 시간대에 맞는 일상을 계획하는 것이 좋습니다.

일상이 간단하고 따르기 쉬울수록, 치매대상자가 더 안심할 수 있고 집에서도 스트레스를 덜 느끼게 됩니다.

정해진 시간에 일어나고 하루를 시작하는 일련의 활동을 정해 순서대로 하는 것이 좋습니다. 예를 들어, 세면, 양치질, 옷

입기, 아침 식사를 순서대로 하는 것입니다. 치매의 진행에 따라 돌봄자가 각 활동을 도와야 할 수 있지만, 기본적인 일상을

가능한 한 비슷하게 유지하는 것이 대상자에게 안정감을 주고 스트레스를 줄이는 데 효과적입니다.

낮에는 친구나 다른 가족을 만나거나, 산책, 책 읽기, 게임, 라디오 듣기 등 대상자가 즐길 수 있는 활동 시간을 갖는 것도

중요합니다. 이런 활동은 개인의 관심사와 현재 능력에 따라 달라질 수 있습니다.

치매 초기에는 가족이나 친구에게 최소한의 도움을 받아 원하는 활동을 할 수 있지만, 치매가 진행되면서 활동을 수정하거나

변경해야 할 수도 있습니다. 대상자의 일상을 파악한 후, 시간이 지나면서 필요에 따라 일과를 유연하고 창의적으로 조정하는

것이 중요합니다.

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사례를 살펴봅시다.

치매를 진단받은 백미연 씨는 아침에 일어나자마자 차를 마시는 습관이 있습니다.

백씨의 딸은 의사의 권고에 따라 어머니가 매일 산책하기를 원했습니다.

그러나 어머니의 평소 일상에 익숙하지 않았던 딸은 아침 식사 후 산책할 것을 제안했고, 어머니는 이를 거절했습니다.

확인하기 1. 아침 일상

딸의 올바른 대처는 무엇일까요?

적절하다고 생각하는 항목에 모두 표시해 보세요.

□ 평소처럼 어머니가 차를 먼저 마시도록 하면, 차를 마신 후 산책할 가능성이 높아집니다.

□ 어머니에게 어떤 일상이 익숙한지, 어떤 순서로 하고 싶은지 물어봐야 합니다.

□ 의사의 권고에 따라 산책을 강요해야 합니다.

기억하기

• 가능한 한 오래 치매대상자의 평상시 일상을 유지하는 것이 중요합니다.

• 일상을 유지하는 것이 대상자의 혼란, 초조감, 조바심, 권태로움 등을 줄이는데 도움이 되며 무엇보다 본인이 존중받고

있다고 느끼게 합니다.

• 만약, 당신의 일상이 다른 사람에 의해 일방적으로 계획되거나 바뀐다면 어떤 기분이 들지 생각해 보세요.

정답확인

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2. 치매대상자의 능력 변화에 맞게 일상활동을 어떻게 조정해야 할까요?

치매대상자의 능력 변화에 맞추어 일상을 조정하는 것이 중요합니다.

다음 내용은 치매대상자를 위해 계획할 수 있는 하루 동안의 평상시 일과입니다.

< 아침 시간 >

매일 같은 시간에 일어나기

→ 조정: 치매대상자는 알람을 정확하게 설정하기 어려울 수 있으므로, 일어날 때

주변의 도움이 필요할 수 있습니다.

정해진 시간에 아침 식사 하기

치매 초기에는 대상자가 스스로 아침 식사를 준비할 수 있습니다.

→ 조정: 시간이 지나면서, 재료를 준비하거나 아침 식사를 차려서 먹는 데 더 많은 도움이 필요할 수 있습니다.

양치질, 목욕, 옷 입기 같은 개인위생 관리

치매 초기에는 도움 없이 개인위생 관리를 할 수 있습니다.

→ 조정: 칫솔, 치약 등은 화장실에서 잘 보이는 곳에 배치하는 것이 좋습니다. 치매 말기에는 이러한 활동을 함께 하거나 대신해

주어야할 수도 있습니다.

기억하기

• 아침 활동을 위한 일상 계획을 수립하고 가능한 한 오랫동안 이를 유지하는 것이 중요합니다.

• 치매대상자의 능력이 바뀜에 따라 그에 맞게 일상 계획을 조정할 필요가 있습니다.

개인위생 관리에 대한 자세한 내용은 4부 4장 <개인위생 관리>를 참고하세요.

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< 낮 시간 >

치매대상자의 예전 관심사와 현재 능력을 함께 고려하여 좋아하는 활동을 계획하는 것이 도움이 됩니다.

사례를 살펴봅시다.

백소망 씨는 요리를 좋아해서 가족 모임을 위한 특별한 음식을 자주 만들곤 했습니다.

하지만 치매가 진행되면서 재료 준비와 음식 만드는 순서를 자주 잊어버리게 되었습니다.

처음에는 요리책을 보면서 계속할 수 있었지만, 이조차 점점 어려워졌고, 기껏 준비한 음식도

예전처럼 맛이 없을 때가 많았습니다. 하지만 딸은 어머니가 요리를 계속할 수 있도록 돕고 싶어 합니다.

확인하기 2. 이전에 하던 활동과 관심사 유지하기

딸의 올바른 대처는 무엇일까요?

적절하다고 생각하는 항목에 모두 표시해 보세요.

□ 요리 재료와 도구를 치우고, 어머니에게 더 이상 요리를 할 수 없다고 말합니다.

□ 어머니가 요리를 계속할 수 있도록 함께 장을 보고, 쉬운 요리나 조리된 간편식을 준비합니다.

□ 오후 시간을 내어, 어머니의 현재 능력에 맞추어 함께 요리를 합니다. 정답확인

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일몰 증후군이란 무엇인가요?

치매대상자는 종종 늦은 오후나 이른 저녁에 더 초조해지거나, 공격적이 되거나, 혼란스러워 합니다. 이를 ‘일몰 증후군’이라고 부릅니다.

일몰 증후군은 치매대상자와 돌봄자 모두에게 힘든 증상일 수 있습니다. 일몰 증후군의 정확한 원인은 밝혀지지 않았지만, 일상생활의

변화가 그 중 한 원인일 수 있습니다. 일몰 증후군이 생기는 시간대에는 치매대상자가 익숙하고 의미 있는 활동을 할 수 있도록 하는

것이 좋습니다.

사례를 살펴봅시다.

백선이 씨는 매일 정오부터 오후 3시까지 문화센터에 가서, 점심을 먹고 친구들을 만나 문화 활동을 하는 것을 좋아했습니다. 처음에는

혼자 문화센터까지 걸어갔지만, 기억력 저하가 심해지면서 더 이상 가는 길을 찾지 못하게 되었습니다. 이에 딸은 다른 가족에게

어머니를 센터로 데려다 주고, 마친 후 다시 집으로 모시고 와 달라고 부탁했습니다. 한동안은 문제가 없었지만, 점차 어머니를 데려다

줄 사람을 구하기 힘들어졌습니다. 딸은 어머니와 매일 오후 함께 있을 수 없는 상황이어서 어떻게 해야 할지 고민하고 있습니다.

확인하기 3. 바깥 활동과 관심사 유지하기

딸의 올바른 대처는 무엇일까요?

적절하다고 생각하는 항목에 모두 표시해 보세요.

□ 다른 가족에게 어머니를 문화센터로 데려다 달라고 부탁합니다.

□ 가족 이외의 다른 믿을 수 있는 사람에게 어머니와 함께 문화센터까지 동행해 달라고 부탁합니다.

□ 오후 시간에는 집에서 텔레비전을 보거나 라디오를 듣는 것 같은 조용한 활동을 하게 합니다.

기억하기

• 치매대상자의 일상을 존중하고, 가능한 한 오랫동안 유지하는 것이 중요합니다. 만약 더 이상 이전과 같은 일상생활이

불가능하다면, 대상자에게 의미있고 중요한 활동이 계속될 수 있도록 최선을 다해 일상생활을 조정해나가야 합니다.

정답확인

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< 취침 시간 >

백은난 씨는 밤에 잠자리에 들기 전 30분 간 조용히 책 읽는 것을 좋아했습니다.

그러나 치매가 진행되면서 점점 책 읽는 것이 어려워져서 가끔은 책을 멍하니 쳐다보고 있기만 합니다.

책 읽기가 점점 더 어려워지자, 딸은 어머니의 현재 능력에 맞게 저녁 일과를 조정하려고 합니다.

확인하기 4. 일과 조정

딸의 올바른 대처는 무엇일까요?

적절하다고 생각하는 항목에 모두 표시해 보세요.

□ 잠들기 전 15분정도 어머니에게 책을 읽어 줍니다.

□ 어머니의 방에서 책을 치웁니다.

□ 어머니를 위해 글보다는 그림이 많은 책이나 오디오북을 준비합니다.

기억하기

• 오전, 오후, 취침 시간에는 가능한 한 일과를 정해 유지하되, 치매대상자의 능력에 맞게 조정하는 것이 중요합니다.

• 하루 일과를 순서대로 정리해 눈에 잘 띄는 곳에 놓아두면, 하루동안 무엇을 해야 할지 더 쉽게 기억할 수 있습니다.

정답확인

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1. 활동하기

당신이 돌보는 치매대상자의 일과를 잘 알고 있나요?

치매대상자의 하루 일과를 적어보고, 이를 대상자의 현재 능력에 맞게 어떻게 잘 조정할지 고민해 보세요.

<아침>

<점심>

<저녁>

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지금까지의 내용을 정리해 봅시다.

• 치매대상자의 일상을 정하는 것이 중요합니다.

• 치매를 진단받기 전에 가졌던 일상을 최대한 유지할 수 있도록 도와주세요.

• 시간이 지나면서 치매대상자의 능력이 변할 수 있으므로, 그에 맞춰 일상을 조정할 준비가 필요합니다.

4부. 일상생활 돌보기

171

5장. 즐거운 하루 보내기 (해답)

확인하기 1. 아침 일상

딸의 올바른 대처는 무엇일까요?

Ｏ 평소처럼 어머니가 차를 먼저 마시도록 하면, 차를 마신 후 산책할 가능성이 높아집니다.

이 방법은 도움이 될 수 있습니다. 이 방법은 어머니가 일상을 유지하는 데 도움이 될 것입니다.

Ｏ 어머니에게 어떤 일상이 익숙한지, 어떤 순서로 하고 싶은지 물어봐야 합니다.

이 방법은 도움이 될 수 있습니다. 이를 통해 어머니의 일상을 이해할 수 있습니다. 다만, 이 방법은 치매 초기나 중기에

효과적이며, 시간이 지나면 어머니가 자신의 일상을 기억하지 못할 수도 있습니다.

Ｘ 의사의 권고에 따라 산책을 강요해야 합니다.

이 방법은 도움이 되지 않습니다. 어머니가 원하지 않는 산책을 강요하면, 불편해하거나 스트레스를 받을 수 있습니다.

4부. 일상생활 돌보기

172

5장. 즐거운 하루 보내기 (해답)

확인하기 2. 이전에 하던 활동과 관심사 유지하기

딸의 올바른 대처는 무엇일까요?

Ｘ 요리 재료와 도구를 치우고, 어머니에게 더 이상 요리를 할 수 없다고 말합니다.

이 방법은 도움이 되지 않습니다. 대안이 될 방법을 시도해 보지 않는 것은 어머니를 화나게 할 수 있습니다.

Ｏ 어머니가 요리를 계속할 수 있도록 함께 장을 보고, 쉬운 요리나 조리된 간편식을 준비합니다.

이 방법은 도움이 될 수 있습니다. 어머니의 일상을 존중하면서 현재 능력에 맞게 활동을 조정하는 것입니다.

Ｏ 오후 시간을 내어, 어머니의 현재 능력에 맞추어 함께 요리를 합니다.

이 방법은 도움이 될 수 있습니다. 이 방법은 어머니가 도움을 받으며 일상을 계속할 수 있게 합니다.

4부. 일상생활 돌보기

173

5장. 즐거운 하루 보내기 (해답)

확인하기 3. 바깥 활동과 관심사 유지하기

딸의 올바른 대처는 무엇일까요?

Ｏ 다른 가족에게 어머니를 문화센터로 데려다 달라고 부탁합니다.

이 방법은 도움이 될 수 있습니다. 가족 중 누군가가 규칙적으로 어머니를 데려다 줄 수 있다면, 어머니의 일상을

유지하는 동시에 능력에 맞게 일상을 조정할 수 있는 좋은 해결책이 될 것입니다.

Ｏ 가족 이외의 다른 믿을 수 있는 사람에게 어머니와 함께 문화센터까지 동행해 달라고 부탁합니다.

이 방법은 도움이 될 수 있습니다. 가족이 항상 곁에 있을 수 없는 상황에서 주변의 다른 사람이 어떻게 도와야 할지

모를 때, 도움을 요청할 수 있는 구체적인 방법입니다.

Ｘ 오후 시간에는 집에서 텔레비전을 보거나 라디오를 듣는 것 같은 조용한 활동을 하게 합니다.

이 방법은 도움이 되지 않습니다. 이 방법은 어머니를 다른 사람들로부터 소외시키고, 평소 즐기던 활동에 참여하지

못하게 만들 수 있습니다. 하지만, 치매 말기 단계에는 조용한 활동이 안정감을 주는 좋은 방법이 될 수도 있습니다.

4부. 일상생활 돌보기

174

5장. 즐거운 하루 보내기 (해답)

확인하기 4. 일과 조정

딸의 올바른 대처는 무엇일까요?

Ｏ 잠들기 전 15분정도 어머니에게 책을 읽어 줍니다.

이 방법은 도움이 될 수 있습니다. 어머니가 계속 독서를 즐길 수 있도록 도와주며, 현재 능력에 맞게 활동을 조정하는

좋은 방법입니다.

Ｘ 어머니의 방에서 책을 치웁니다.

이 방법은 도움이 되지 않습니다. 어머니에게 독서가 얼마나 중요한지 고려하지 못한 행동입니다. 어머니와 딸은 여전히

이러한 일상활동을 함께할 수 있다는 점을 인식해야 합니다. 단지 약간의 조정이 필요할 뿐입니다.

Ｏ 어머니를 위해 글보다는 그림이 많은 책이나 오디오북을 준비합니다.

이 방법은 도움이 될 수 있습니다. 독서를 좋아하지만, 글이 많은 책을 더 이상 읽을 수 없는 치매 말기 대상자에게

여전히 독서의 즐거움을 줄 수 있는 유용한 방법입니다.

4부. 일상생활 돌보기

175

5장. 즐거운 하루 보내기

이번 과정을 마쳤습니다!

잘하셨습니다!

iS u

p p

o rt-K

o re

a 치 매

돌 봄

자 를

위 한

교 육

및 지

원 지

침 서

1장. 행동 변화에 대한 이해

2장. 기억력 저하

3장. 공격적인 행동

4장. 우울, 불안, 무감동

5장. 수면 장애

6장. 망상과 환각

7장. 반복적인 행동

8장. 배회와 길 잃기

9장. 판단력 변화

10장. 조화롭게 대처하기

행동 변화에 대처하기

제5부

제5부. 행동 변화에 대처하기

5부. 행동 변화에 대처하기

177

1장. 행동 변화에 대한 이해

왜 중요한가요? 치매는 사람의 행동과 사고방식을 변화시킵니다.

이로 인해 치매대상자뿐 아니라 그들을 돌보는 돌봄자도 스트레스와 불안을 느낄 수 있습니다.

어떤 도움이

되나요?

치매로 인한 행동 변화를 이해 및 예방하고, 그에 적절히 대처하는 기술을 익히는데 도움이

됩니다.

배우게 될 내용은

무엇인가요?

1. 치매로 인한 행동 변화는 어떻게 나타나고

돌봄자에게 어떤 영향을 미칠까요?

2. 치매로 인한 행동 변화는 어떤 단계로

진행될까요?

3. 행동 변화에 효과적으로 대응하기 위한 접근

방법에는 무엇이 있을까요?

1장. 행동 변화에 대한 이해

5부. 행동 변화에 대처하기

178

1장. 행동 변화에 대한 이해

1. 치매로 인한 행동 변화는 어떻게 나타나고 돌봄자에게 어떤 영향을 미칠까요?

치매는 사람의 행동과 사고방식을 변화시킬 수 있습니다. 이로 인해 치매대상자뿐 아니라 그들을 돌보는 돌봄자도 스트레스와

불안을 느낄 수 있습니다.

“돌봄자나 치매대상자가 불편감을 느끼는 모든 행동은 스트레스를 유발할 수 있습니다.”

이 장에서 배우게 될 내용은 다음과 같습니다:

• 돌봄자와 치매대상자가 불편하거나 스트레스를 받을 수 있는 행동은 어떻게 알아차릴 수 있을까요?

• 치매대상자의 행동 변화에 어떻게 대처할 수 있을까요?

• 치매대상자의 행동 변화를 줄이거나 예방하기 위해 상황을 어떻게 바꿀 수 있을까요?

기억하기

• 여러 가지 요인들이 당신이나 당신이 돌보고 있는 사람에게 불편한 행동 변화를 일으킬 수 있습니다.

• 이러한 변화는 돌봄자와 치매대상자의 관계에도 부정적인 영향을 미칠 수 있습니다.

• 때로는 우울, 분노, 혼란, 불안 등을 느낄 수 있으며, 상황을 감당하기 어려운 경우도 있습니다.

• 다양한 행동 변화를 확인한 후 이러한 상황을 줄이거나 예방하는 방법을 알아보겠습니다.

5부. 행동 변화에 대처하기

179

1장. 행동 변화에 대한 이해

1. 활동하기

당신이 돌보고 있는 사람에게서 다음과 같은 행동 변화를 경험한 적이 있나요? 해당하는 항목에 표시해 보세요.

행동 변화 예시

□ 기억력 저하 물건을 잃어버리거나, 최근에 일어난 일을 기억하지 못하고, 날짜와 요일을 헷갈려 합니다.

□ 공격적인 행동 위협적인 말이나 행동을 합니다. 상대방에게 두려움을 느끼게 하는 행동을 합니다.

□ 우울, 불안, 무감동

슬픔, 걱정, 두려움, 좌절, 분노를 느끼고, 감정적으로 불안해하거나 지나치게

슬퍼하거나 초조해합니다. 안절부절못하거나, 위축되고, 우울해 보이고, 반응이 없거나

반응 속도가 느려집니다.

□ 수면 장애 밤에 불안해하며 돌아다니거나, 가족을 깨웁니다.

□ 환각 실제로 존재하지 않는 감각을 경험합니다. 실제로는 없는 소리, 없는 이미지, 없는 냄새

등을 경험하며, 이것들이 실제로 존재한다고 믿습니다.

□ 망상 실제와 다른 잘못된 믿음을 고집합니다. 명백한 증거에도 불구하고 자신이 가진 믿음이

맞다고 확신합니다.

□ 반복적인 행동 같은 질문이나 행동을 계속 반복합니다.

□ 배회: 주위를 계속 돌아다님 계속해서 주변을 걸어 다니거나, 집을 나가 길을 잃곤 합니다.

□ 판단력 변화 상황에 맞지 않는 말이나 행동을 하고, 자신이 할 수 없는 일을 시도하며, 자신의

한계를 이해하지 못합니다.

□ 어떠한 행동 변화도 발생하지 않음 현재 어떠한 증상도 나타나지 않았습니다.

5부. 행동 변화에 대처하기

180

1장. 행동 변화에 대한 이해

2. 치매로 인한 행동 변화는 어떤 단계로 진행될까요?

치매대상자의 행동 변화와 그 행동 전후에 일어나는 상황을 이해하는 것은 매우 중요합니다.

이에 대한 이해가 깊어지면, 특정 행동을 줄이거나 예방할 수 있습니다. 특정 행동이 나타나기 전, “유발 요인”이 무엇인지

주의 깊게 살펴보고 이해하면, 그 행동을 줄이거나 예방하는 데 도움이 될 수 있습니다.

사례를 살펴봅시다.

이전화 씨는 치매를 가지고 있으며 남편이 아내를 보살피고 있습니다.

남편은 아내에게 지난주에 누가 찾아왔는지, 어제 저녁에 무엇을 먹었는지 자주 물어봅니다.

하지만, 아내는 이런 것들을 기억해내지 못해 불안해하고, 남편은 그로 인해 좌절감을 느끼게 됩니다.

아래의 단계를 참고하여 이 상황에서 어떤 일이 있었는지 생각해 보세요.

행동 행동이 발생하기 전에

어떤 일이 있었나요?

“남편은 아내에게 질문을 한다＂ “남편은 좌절감을 느낀다”“아내는 질문에 대답하지 못하고 불안해진다”

행동에 대한

돌봄자의 반응

5부. 행동 변화에 대처하기

181

1장. 행동 변화에 대한 이해

행동 전에 무슨 일이 있었나요?

아내가 불안해하기 전에 어떤 일이 있었는지 살펴보고 이중, 바꿀 수 있는 부분이

무