A guide to help you better manage the responsibilities of providing care to a person with dementia.

Transcription

1 A guide to help you better manage the responsibilities of providing care to a person with dementia.

2 DEMENTIA & ALZHEIMER S DISEASE GUIDE

3 TABLE OF CONTENTS 2 Understanding Dementia & Alzheimer s Disease 3 What Is Alzheimer s Disease? 4 The Importance of Early Diagnosis 5 Coping Strategies for Caregivers 6 Communication Techniques 7 8 Challenging Responsive Behaviours & Ways to Reduce Stress 9 10 Ways to Cope with Responsive Behaviours 11 The Importance of a Familiar Environment 12 Where to Find Community Support Sharing the Caring 16 Choosing a Home Care Agency Keeping Yourself Strong and Healthy 20 Additional Information at Your Fingertips ALL CONTENTS 2018 CBI HOME HEALTH ALL RIGHTS RESERVED DEMENTIA & ALZHEIMER S DISEASE GUIDE

4 Understanding Dementia & Alzheimer s Disease Alzheimer s disease is the most prevalent type of dementia, but there are many other forms. Dementia is defined as a syndrome characterized by a set of symptoms including: Impairments of memory, judgment and thinking Challenges with speech, language and comprehension Changes in personality, mood, orientation and balance Some dementias are reversible or treatable, including some forms of depression or delirium, caused by vitamin B 12 deficiencies, thyroid disorders, infections and reactions to certain medications. There are also non-reversible types of dementia: frontotemporal dementia, Lewy body disease, Parkinson s disease, Pick s disease, stroke and, of course, Alzheimer s disease. It s important to note that although the cognitive abilities of a person with Alzheimer s disease or another dementia will decline over time, the process is gradual. Some days will be better than others. It s important to focus on your loved one s remaining abilities and to do what you can to promote an active and rewarding lifestyle. 2 DEMENTIA & ALZHEIMER S DISEASE GUIDE

5 THE SMITH FAMILY S STORY: What is Alzheimer s Disease? Alzheimer s disease is a progressive, degenerative brain disease that causes a gradual decline in a person s cognitive ability. Alzheimer s disease is the most common type of dementia; it accounts for approximately 64% of all dementias. With Alzheimer s disease, abnormal proteins known as plaques and tangles literally choke healthy brain cells, destroying them and causing loss of function. As the disease advances, it affects different areas of the brain, resulting in changes to an individual s abilities, memory, behaviour and personality. Why these proteins develop in the brain remains unknown. A few approved drugs are commonly prescribed to help delay or modify some of the behavioural symptoms, but there is currently no cure for Alzheimer s disease. There is hope: scientists all over the world have been making great strides in research over the past few decades and continue to offer promising results. The Smith family s get-togethers were always filled with music, food and fun. But as Emily s cognitive abilities began to decline, she often became very agitated, especially with the greatgrand-children. She would often yell at them to settle down. She also began asking to go home, even though she had just arrived at an event. Her son would try to encourage her to stay and have fun with everyone, but this only increased her agitation. Many of the family members wondered if it was worth involving Emily in every family gathering. Eventually, they decided that large family gatherings were causing her to be more upset than happy. They decided to establish a new family tradition centred around shorter visits involving fewer people. This significantly improved Emily s mood and resulted in more enjoyable visits with her family members. DEMENTIA & ALZHEIMER S DISEASE GUIDE 3

6 The Importance of Early Diagnosis Getting an early diagnosis can help individuals and families be more proactive and gain more control over their lives. It s natural to fear an unwelcome diagnosis, but delaying the investigation may actually make matters worse. As we ve already mentioned, some dementias are treatable and are, in fact, reversible. Early diagnosis will help to better deal with the situation and will better allow for: Gaining insight and education on the condition Exploring treatment options Creating plans for the future Developing support networks Although receiving a diagnosis is difficult, many people experience a measure of relief once they understand the reason for their symptoms. OBTAINING A DIAGNOSIS When did they begin and how often do they occur? How are the symptoms affecting your ability to manage everyday activities? The answers to these questions will help the doctor rule out certain causes of dementia. The doctor may also complete a physical exam, a review of medical history and order laboratory exams such as blood work. A referral to a specialist, such as a neurologist or a geriatrician, may also occur at this time. A CAT scan or an MRI may also be suggested by your familydoctor or the specialist. Lastly, the doctor will likely test your memory and other cognitive functions to assess short-term memory and recall. Many Alzheimer s societies in Canada offer programs that accelerate access to care for patients with dementia and their families. Ask a member of your healthcare team for a referral or go to your provincial or national Alzheimer s society website for more information. Your family doctor will want to know more about the symptoms you or your loved one is experiencing. 4 DEMENTIA & ALZHEIMER S DISEASE GUIDE

7 Coping Strategies for Caregivers You may find that the progression of dementia in your loved one can result in a decrease in functioning and ability. As a caregiver for someone with dementia, you may experience a variety of emotions. For example, the additional support and demands on your time, energy and finances may bring out feelings of distress or of anger. Feelings of hopelessness or of being overwhelmed are common and normal for any caregiver under these strains. It s what you do with these emotions that is most important. Talking about these feelings with a close friend, family, clergy, doctor, a support group or even a professional has been shown to reduce stress and help families cope with their experiences. To learn more, please refer to CBI s informative booklet called Being a Family Caregiver Guide. See bit.ly/caregiverguide Stress is a very real health hazard. Caregivers often ignore the signs of stress, often resulting in caregiver burnout or other health problems. Caregivers needs are important and must be addressed. That s why it s best to seek and accept help before the onset of stress-related symptoms. Accepting that you have limitations, and being assertive in asking for help before a situation becomes a crisis is what being proactive is all about. It s important for you and for the person who depends on you. Obtaining information about dementia and/or Alzheimer s disease will better equip any caregiver for the journey ahead. It will help you form realistic expectations. Alzheimer Society chapters in Canada. DEMENTIA & ALZHEIMER S DISEASE GUIDE 5

8 Communication Techniques How you communicate can make a big difference, especially to someone with damage to the communication centres of their brain. Incorporating some of the following communication tips is a great way to provide positive support. In the early stage: Be patient Give the person time to express themselves Don t interrupt Be supportive Don t talk about the person as if they are not there Don t be condescending Don t be patronizing Avoid asking questions that rely on their memory Try communicating simple reminders by using sticky notes or other communication aids Limit distractions as much as possible Find a quiet place to talk to minimize distractions Avoid criticizing, correcting or arguing Look beyond the words; watch body language to understand what the person is experiencing and/or expressing As communication becomes more difficult in later stages: Approach the person calmly from the front Make eye contact Identify yourself clearly Avoid sudden movements, which may frighten them Call the person by their name Use short, simple sentences Ask one question at a time and wait for a response Ask simple yes or no questions (instead of asking What would you like to wear? say Would you like to wear this? ) Avoid vague instructions, such as Put it over there. Instead, try saying, Put it on the table. If repeating yourself, use exactly the same words again but speak more slowly. If you are still not understood, rephrase using shorter, simpler sentences. Give visual cues by pointing to the object you are talking about Ask the person to point or gesture if they can t find the right word or expression Pay attention to your body language and facial expressions as your loved one may pick up on stress or anxiety, which may impact the mood they are in Practice makes perfect; using the above techniques will take time and practice so be patient with yourself. Reviewing these techniques often will help along the journey to ensure supportive communication. 6 DEMENTIA & ALZHEIMER S DISEASE GUIDE

9 Look for the reason behind the behaviour. Challenging Responsive Behaviours & Ways to Reduce Stress Behaviours associated with dementia can be challenging, but it s very important to understand that the behaviour is often the result of an unmet need. Look for the reason behind the behaviour. To do this, ask your- self WHY this behaviour is happening. Pinpointing the root cause makes it easier to determine a solution. The following list can help: Look for signs of physical discomfort: Are they in pain? Are they hungry or thirsty? Do they need to use the toilet? Is their body temperature comfortable? Are medications causing negative effects? Ask them questions if they are able to respond: Do you need to use a toilet? Are you worried about something? Are you tired? Are they concerned or anxious? Are they worried about something? Perhaps they are feeling anxious about something perceived to be real? Are they scared? Are they frustrated? Look at the environment: Did someone or something upset them? Is the environment too noisy or too quiet? Is it cluttered or confusing for them? Look for triggers: Did they see or hear something that triggered the behaviour? Could it be a certain time of day? Perhaps a certain person or phrase could have triggered the reaction/behaviour. Knowing the behaviour s root cause allows you to help. Some needs or behaviours may be easy to understand; others may require a more creative approach. For really challenging situations, you may need professional support. g DEMENTIA & ALZHEIMER S DISEASE GUIDE 7

10 SUNDOWNING You may notice that the person with dementia displays a pattern of behaviours that occur regularly in the late after-noon or early evening. This pattern can cause a great deal of caregiver stress and exhaustion. Some of the behaviours you may witness can include: Confusion and/or agitation Restlessness and/or anxiety Exit-seeking and/or impulsiveness Forgetting how to complete tasks that they did not have trouble with earlier in the day This regular behaviour pattern can be caused by: Changes in natural light that create shadows that agitate your loved one (hallucinations, delusions) Your loved one is more tired at the end of the day There is often less activity at the end of the day, which can increase restlessness Tips for helping the person with dementia: Keep a journal to track what causes the behaviour Give your loved one time to rest throughout the day Schedule appointments for early in the day Increase lighting during this time Maintain routines Distract your loved one with activities (such as setting the table) Reduce the stimulation in the environment (reduce noise, visual stimuli) 8 DEMENTIA & ALZHEIMER S DISEASE GUIDE

11 Ways to Cope with Responsive Behaviours This experience is not the same for every caregiver, so it s important to try various ways of coping. The following may help in difficult situations Validate their feelings: Showing concerns for someone s feelings often puts them more at ease. Showing you care about them and how they feel, regardless of whether their feelings are justified or fitting the situation, helps them feel heard and loved. Be creative: When caring for someone with dementia it s important to be creative. You may need to be flexible and change a routine to make it work for your situation. You may also need to change the way you do things or how you say things. Ideally you want to do whatever works; use your imagination! Therapeutic reasoning: Therapeutic reasoning is a technique many caregivers use with someone who has dementia. It involves tuning your message to the world of their perception. For example, if your loved one once lived on a farm and is anxious to get home to milk cows, explaining that they no longer live on the farm might be challenging. If so, use therapeutic reasoning by saying, Good news, the cows have already been milked today! Keep a consistent and calm environment: Daily, consistent routines make for a more comfortable, supportive environment. So too does a quiet, calm atmosphere. Confusing sounds a loud radio and TV turned on at the same time while trying to have a conversation may create an environment that feels hostile. Reduced stimulation will likely contribute to a more peaceful and productive environment. g DEMENTIA & ALZHEIMER S DISEASE GUIDE 9

12 Let them do as much as they can: Use it or lose it is the adage often applies to daily activities for individuals with dementia. Ideally, they should be doing as much as they can for themselves, for as long as possible. Encouraging them to remain involved can be a big help for both of you. Be patient: It s not always easy to maintain your patience. Try taking three deep breaths when you notice yourself slipping. Keep in mind that your loved one is likely not testing your patience on purpose; it s the disease at work, not the person. Take breaks: All caregivers need time to relax and recharge their batteries. For some, the need may arise a few times a day; for others, it may be a few hours a week or a few weeks in a year. Turning to family and friends for help or respite. Keep a sense of humour: Nothing about dementia is funny. That said, laughing can be a wonderful medicine for everyone. Do your best to cultivate a loving sense of humour every day and encourage the person with dementia to share in the moment. Having the person in a good mood will contribute to the quality of everyone s day. Don t be shy about asking for help: This can t be stressed enough. Asking for help is a proactive way to remain healthy and able to support the person with dementia. Looking for ways to share some of the responsibility will help you provide better care. 10 DEMENTIA & ALZHEIMER S DISEASE GUIDE

13 The Importance of a Familiar Environment For a person with declining cognitive abilities, it is already difficult to remember the day of the week, the names of the neighbours and what he or she did the previous day. Taking them out of their familiar environment can increase the confusion they are already experiencing. Adding unfamiliar people, rooms and routines into the cognitive mix can often elevate their feelings of confusion, anxiety and frustration. Sticking with day-to-day routines and familiar places will help them cope with their declining abilities. If you need to take the person with dementia out of their familiar environment and routines, be ready for added confusion until a new routine can be established. LILLY S STORY: Lilly was diagnosed with Alzheimer s disease at age 85. As her disease progressed, she no longer recognized her current home because, in her mind, she was regressing to her past address. Each night, she would ask her husband when she was going home, even though she was already at home. Her husband, Rob, tried to explain to her that they were at home, but that didn t always settle her down. That was when Rob started using therapeutic reasoning, telling her they would go home in the morning. This seemed to settle Lilly for the night. When morning came, Lilly had forgotten about wanting to go home. The outcome was a restful night s sleep for both Rob and Lilly. DEMENTIA & ALZHEIMER S DISEASE GUIDE 11

14 Where to Find Community Support All across Canada, in every community, more and more people are caring for people with dementia. If you are among them, don t be afraid to ask questions or seek help. The following supports, found in most communities, can help answer your questions: Your local Alzheimer s Society. This notfor-profit organization provides dementia education and support everything from counselling or education specific to your situation to support groups. To learn more, visit: Your local library. All libraries will be able to provide you with a number of educational materials and resources to help you learn more about dementia. To find a library near you visit: ca/gateway/s e.html. Your family doctor. Your doctor s office may know of local supports and will also be able to answer your questions about dementia. Your local health authority or community. Government healthcare bodies will be able to provide you with information about home support options, respite care and answer your questions about placing someone in long-term care. Health Canada General Inquiries: Your pharmacist. Pharmacists will have information about the types of drugs that are commonly prescribed for people with dementia. Senior health fairs. These fairs often hosted once or twice a year will showcase the organizations, agencies and support services that are available in your community. The internet. The internet provides a virtually endless amount of information on dementia care, the various types of dementias, expectations, research and other helpful resources. Look for information from reputable sources. Your local alzheimer s society Your local library Your family doctor Your local health authority or community Your pharmacist Seniors health fairs The internet 12 DEMENTIA & ALZHEIMER S DISEASE GUIDE

15 Sharing the Caring The responsibilities of caring for a person with dementia may seem (and actually be) overwhelming for one person to tackle alone. Asking for help from family members and others may be challenging. Here are a few suggestions to promote communication and a greater sharing of responsibilities: Make a list of all the things that you are currently doing and note the time requirement for each item. Identify the things your siblings, family members and others could do to help. You never know they may be feeling left out and might welcome an opportunity to contribute. If your siblings (or others) live out of town, suggest ways in which they can assist. For example: researching community resources online, completing income tax forms, ordering items online, setting up automatic bill payments or researching options for home improvement projects, etc. If you are sensing conflict from a family member, don t jump to conclusions. Provide opportunities for everyone to share their feelings and perspectives on the situation. It may help to suggest that everyone set aside any interpersonal differences and focus on the best interests of the person with dementia. g DEMENTIA & ALZHEIMER S DISEASE GUIDE 13

16 There should be one primary caregiver who is responsible for communicating with doctors, specialists, case managers, etc. Identify a communication mechanism for sharing information (for example, , phone tree, etc.). Set up a shared calendar and ask for volunteers to do certain tasks. In the home, keep a communication book in which everyone (including the person with dementia) can record observations, suggestions, phone messages, appointments, etc. Remember that, as the main caregiver, you need respite breaks. If family members and others can t help out, perhaps they can help pay for the cost of third-party help. ANNA S MOTHER S STORY: One day, Anna noticed that her mother was acting quite strangely. She had forgotten, for example, to take out the garbage and feed the cat. She was also showing signs of being upset, accusing the neighbours of stealing from her. This wasn t normal, so Anna booked an appointment for her mother with her family doctor. After a few tests, it was discovered that her mother had a bladder infection that caused symptoms of dementia. An antibiotic was prescribed and, within a few days, Anna s mother was back to her usual self. 14 DEMENTIA & ALZHEIMER S DISEASE GUIDE

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18 BE SELECTIVE Choosing a Home Care Agency Questions to consider when deciding on a home care provider Do I need to be referred 1 8 by a doctor or hospital? Is there a minimum charge? How much time must I allow between my request for service and the first home visit? Can your agency respond to a request for service on short notice? Is there an extra charge? Will the same home care worker be coming every time or will there always be a new caregiver each time? How do you train your home care personnel? Do they have post-secondary education? What references do your home care personnel have? Are they insured? Do you have home care personnel with specialized training in certain diseases and injuries? Will my private insurance company pay the bill? How long has the company been in the area? 6 7 What if I need service on a holiday or after normal business hours? Can you provide that? Who do I call in case of emergency, even after hours? Are your healthcare standards accredited for excellence? What services do you provide? 16 DEMENTIA & ALZHEIMER S DISEASE GUIDE

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20 Keeping Yourself Strong and Healthy Caring for yourself is one of the most important and one of the most often forgotten things you must do as a caregiver. When your needs are taken care of, the person you are caring for will benefit, too. THE 3 Rs OF CAREGIVING RESPECT is closely linked to admiration, esteem and reverence. These words are used here to describe you you as a caregiver. You deserve to be held in high opinion by yourself. By respecting yourself, you ensure that your body, mind and spirit remain whole so that you can carry on the tasks of being an effective family caregiver. REALISTIC expectations it s easy to say but more difficult to achieve. It s hard to have realistic expectations when you are new to caregiving or when you are so involved in the process that you risk losing a sense of perspective. But with time, experience and knowledge, you can learn to take control and to say no when expectations become unrealistic. Better time management involves delegating, planning ahead, prioritizing and accepting offers of help. You may feel overwhelmed as you try to divide your time and energy between your own family s needs and those of your loved one. If you do, ask yourself these four questions: What can I realistically do to help? What is it that I can t do? What can my loved one do to help? And whom can I turn to for help? WAYS OF TAKING CARE OF YOURSELF First and foremost, if you need it, get some rest. Ask someone you trust to take over your duties so that you can take time to sleep, watch TV, read and collect your thoughts and feelings. Once you ve rested, create a detailed calendar that is realistic and that incorporates time for you to do what you enjoy or need to do to remain in control of your life. Think about the importance of each of the five Fs of family caregiving and try to give time and attention to these important factors: family, friends, faith, forgiveness and fun. Avoid stressing over unknowns; consult lawyers, doctors, accountants and professional care services providers who can often provide clarity and alleviate unnecessary concern. If possible, delegate this responsibility to another family member. Set up a Facebook page and reconnect with friends from the past. You may be surprised by how many are experiencing the same challenges and are available to provide support. g RESPITE means taking a break or finding a breathing space in your day. Be good to yourself as you care for your loved one. 18 DEMENTIA & ALZHEIMER S DISEASE GUIDE

21 Keep a personal journal where you can chronicle your feelings, concerns and thoughts. Don t be afraid to write about your feelings of loss, anger or frustration, but also be sure to record the little things that bring joy and happiness to your day. SIGNS OF CAREGIVER BURNOUT (or compassion fatigue) If you feel like the stress of caregiving is beginning to take its toll, check the following list of typical symptoms: Weariness and exhaustion Inability to eat or sleep Inability to concentrate or think clearly Increased dependence on tobacco, alcohol or drugs Weight loss or weight gain Loss of contact with friends Irrational outbursts or frequent moodiness See your healthcare professional if you have any of the above symptoms. There are a number of resources available to people suffering from caregiver burnout. Visit the Carers Canada website at more information. Website resources used for developing the contents of this booklet: alzheimers-dementia-aging.htm DEMENTIA & ALZHEIMER S DISEASE GUIDE 19

22 Additional Information at Your Fingertips CBI Home Health provides a number of valuable resources, free for downloading: The Independent Living Guide promotes safety and security through a room-by-room assessment. The Being a Family Caregiver Guide offers you help to manage the responsibilities of providing care to a loved one. The Dementia & Alzheimer s Disease Guide is a guide to help you better manage the responsibilities of providing care to a person with dementia. Connect with us on Twitter or Facebook to learn about the experiences of other caregivers just like you. The Hospice Palliative Care Guide promotes comfort and well-being in your home at the end of life. CBI Home Health FREE GUIDES offer insight on how to live a more independent and healthier lifestyle. Visit or call us toll-free at to find out more about our services and how we can support you and your loved ones. All are available by calling CBI Home Health at or by visiting 20 DEMENTIA & ALZHEIMER S DISEASE GUIDE

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24 CBI Home Health offers a variety of compassionate and professional care services that help you live your life. These include: personal care, house cleaning and meal preparation, nursing, help with medications, advanced foot care provided by a nurse and accompanied visits. Our caregivers are highly trained to help people with Alzheimer s / dementia, diabetes, acquired brain injury and end-of-life care SERVING OVER 800 COMMUNITIES ALL ACROSS CANADA E