Living Well - Quality of Life
- 1) Tips and strategies for daily living
- 2) Maintaining a healthy lifestyle
- 3) Adapting leisure interests to meet new abilities
- 4) Using assistive technology to remain independent
- 5) Strategies for living alone
- 6) How to meet others affected by dementia
- 7) Becoming a peer mentor or advocate
- 8) Being supported in the workplace
- 9) Managing behaviours and triggers related to dementia
1) Tips and strategies for daily living
This section offers tips and strategies for living daily with dementia. Because we are all individual and unique, not all of these suggestions will work for you. Focus on what works for you and fits your life. It is important to remember there is a way to make everything work(1).
Frequently Asked Questions
What can I do to make my everyday living easier now that I have dementia?
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Below is a list of suggestions to help make day to day living easier.
- Take your time and don't let other people rush you.
- If you find a task challenging or frustrating, step away, take a break and come back later.
- If you are having trouble with a task, do not be afraid to ask for help.
- Explain to people that you have a memory problem and you may need help.
- Take a friend or family member with you when you go out of the house.
- Focus on completing a reasonable number of tasks each day. Try not to overwhelm yourself by trying to accomplish too many things on your to-do list(2).
- Remember there is no right or wrong way to do things. Finding your own best way to accomplish daily tasks is what is important. Make sure to laugh. Keeping a sense of humour can help you stay relaxed.
- Try to think positive thoughts. You might not be able to do everything the same way you used to, but you can find new ways of doing things.
- If there is something you are interested in trying - go for it! There is no harm in trying.
- Make sure to take good care of yourself and make healthy food choices.
- After getting the diagnosis, give yourself some time to settle down(3).
- Try to keep life simple. Minimize stress by giving yourself extra time, slowing down and learning to rest when you feel tired.
- Always try to plan ahead. Develop routines and review your daily calendar every morning.
- Do not be ashamed. Talk openly about your disease and communicate your needs to your family and friends.
- Stay engaged by volunteering or attending a support group.
- Look for transportation resources in your community. Many organizations offer volunteer services that can take you to appointments or to run errands.
- Begin writing down or tape recording things that are important to you. This can be a good way to let other people know what you find meaningful.
- Use electronic aids, like recording devices and alarm clocks, or even a Blackberry or electronic calendar, to help you remember significant dates and appointments.
- When entertaining keep the gathering simple and small, and remember to get lots of rest beforehand so you are not tired.
- Use visual cues, like post-it notes and calendars as reminders to do things. Place medication in a visible place and leave a pad and pen near the phone to write down phone messages. Try using a camera to document things you want to remember.
- Use a credit card instead of carrying large amounts of cash. You can also set up your finances for direct deposit and automatic withdrawals. It is a good idea to have a trusted person to help you with managing your finances. For more information, review the Planning Ahead section of this website.
- Try to only carry the keys you need, in case you are to misplace them.
- Place your phone number on a no-call list to decrease the number of unwanted calls from telemarketers.
- Be conscious of strangers coming to your door, like sales people or those looking for donations. You can put a 'no-soliciting' sign on your door to decrease the likelihood of this happening.
- When you go out, carry a piece of identification with you along with an emergency contact number(4).
What can I do to help with my memory on a day-to-day basis?
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Below is a list of strategies to help with the effects of memory loss on a day-to-day basis.
- Write down appointments in diaries, calendars, bulletin boards and post it notes.
- Make a list of things you need to do and tick them off when you have done them.
- Make special places to put important items (with a reminder of your special place).
- Pre-set your phone with important contact numbers already keyed in.
- Pre-set your cell phone with contact numbers in case you have difficulty when you are out.
- Try playing computer, video or television games.
- Keep learning. Try a new language or learn how to use a computer.
- Do not be afraid to meet new people and try new things.
- Be creative. Write in a journal or try painting.
- Try memorizing magazine articles or passages in books to test your recall. You can also try memorizing your daily routine without having to look at a list(4).
Sources:
The information above comes from the following source(s):
(1) Compiled with permission from Murray Alzheimer Research and Education Program. (2008). Tips and Strategies: A 'By Us For Us" Guide. Waterloo, Canada: MAREP.
(2) List adapted with permission from Alzheimer Society of Canada. (2003). Just for You. Toronto, Canada: Alzheimer Society of Canada.
(3) List adapted with permission from Alzheimer Scotland. (n.d.). Don't make the Journey Alone: A message from fellow travellers. Edinburgh, Scotland: Alzheimer Scotland.
(4) List adapted with permission from Murray Alzheimer Research and Education Program. (2008). Tips and Strategies: A 'By Us For Us" Guide. Waterloo, Canada: MAREP.
2) Maintaining a healthy lifestyle
Even though living with Alzheimer's disease and other related dementias can sometimes be challenging, it is important to try to be as healthy as possible to maintain a healthy brain. You can enrich your quality of life by making healthy lifestyle choices. By choosing to eat right, manage stress and participate in physical and mental activity, you may be able to improve how you manage changes and slow down how quickly the disease progresses. Below you will find information on how you can improve your brain health(1).
Frequently Asked Questions
What can I do to challenge my brain?
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Focus on keeping your brain active on a daily basis. These activities do not have to be really challenging or take up a lot of your time. Choosing activities that you like to do are simple and can fit into your daily routine, will help you to stay interested. Try to vary your daily routine by trying something new, or switching up the way you do a familiar task. For example, you can try brushing your hair with the opposite hand. Thinking, social, and physical activities all challenge your brain. Some activities you might want to try include:
- Workout your mind by playing different games. You might try chess, card games, number puzzles, jigsaws, memory games and crosswords.
- Learn a new hobby, play a musical instrument, take a course of your liking or learn a new language.
- Try attending local plays, museums or concerts. You might discover a new interest.
- Mix up how you approach a daily task or routine. For example, you could try eating with the opposite hand(2).
- Start a physical activity or sport you enjoy. Go for a walk or swim. Start dancing lessons. Do stretching and toning exercises at home.
How can I be more active?
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Staying physically active can help your body, your mood, and your brain. Physical activity can make your muscles strong and prevent health complications associated with inactivity. Physical activity may also help to improve mood and thinking abilities. It is always a good idea to talk to your doctor before you start an exercise program. The doctor may refer you to a physiotherapist to help you choose physical activities that are right for you. Guidelines you can consider when getting started include:
- Consider your current health and fitness level when starting an exercise program. Start slow and progress gradually.
- Make physical activity part of your daily routine. This can be as easy as going for a leisurely walk around the neighbourhood or doing toning exercises at home. Select recreational activities such as gardening or dancing or sports you find fun.
- Set attainable goals.
- Always wear clothing and footwear that is comfortable and functional(2).
- When possible, take the stairs.
- Park the car at the far end of a parking lot and walk a further distance to buildings.
- In cooler climates, look into mall walking programs and arenas that allow the use of the facilities for walking.
- If concerned about balance when walking, consider purchasing walking sticks or poles. These are commonly used among all ages.
What type of physical activity should I do?
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There are a number of ways to get active. You may consider trying one or a combination of the following ideas.
- A simple program of walking and toning exercises can improve your physical and mental health.
- Try to work up to 30 minutes of walking. Even walking around the house is beneficial. You can choose other activities instead of walking such as swimming, cycling, or dancing.
- Include some stretching and toning exercises. These can take as little as 15 minutes a day.
- Some examples of stretching and toning exercises include: wall push ups, standing toe raises, seated toe taps, seated marching, chair stands, seated leg lifts, arm reaches, and seated and standing leg stretches. Exercise Diagrams
- Remember to talk to your doctor before you start an exercise program. The doctor may be able to refer you to a physiotherapist to help you choose stretching and toning exercises for you.
What are ways to stay connected with others?
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Maintaining social connections can help to reduce feelings of isolation and loneliness. Connect with family, friends and other people in the community, such as neighbours, to stay engaged and to maintain a positive outlook. The more socially active you are, the healthier your brain will be. Here are some ideas for staying connected with others(1).
- Attend social events with family members and friends.
- Stay active at work or become a volunteer.
- Join a local senior's centre, club or a class you are interested in. You can also look for hobby groups in your area.
- Accept invitations for social outings.
- Consider joining a support group to have an outlet to discuss how you are feeling and ways to help manage the disease.
- Start conversations with community members and do not be afraid to ask for help(2).
- Consider participating in on-line chat groups such as the discussion groups facilitated by the Dementia Advocacy and Support Network International (DASNI).
- Begin a lunch or dinner club with your friends or others experiencing memory loss in your community.
- Participate in day programs.
Do not be afraid to discuss with others how they can support you in maintaining your social connections and engagement in the community.
What can I do to make healthy lifestyle decisions?
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There are many simple choices you can make that will help you to improve your health. These choices can help you to minimize risk factors connected with dementia, such as diabetes, high blood pressure and high cholesterol.
- Keep track of your blood sugar, cholesterol, blood pressure and weight.
- Do not smoke and avoid consuming excessive amounts of alcohol.
- Make appointments to visit your doctor on a regular basis for check-ups. That way you can discuss any health concerns you may have.
- Make regular trips to your dentist.
- Make sure to get lots of sleep.
- Have your hearing and vision tested frequently, to avoid stress and confusion(2).
- Eat a healthy diet with lots of fish, fruits and vegetables.
- Be physically active most days of the week
How can I make healthy food choices?
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Consider the information below to assist with healthy food choices.
- There is no specific diet with special food requirements for people living with dementia, but there are many benefits associated with making sure you are eating a wide variety of nutritious foods. A healthy diet will provide the fuel and nutrients you need to increase your energy and function at your best.
- Use Canada's Food Guide as your healthy eating guide, in helping you choose food types and portions. Try to eat a variety of foods from each of the four food groups each day, while aiming to eat at least the minimum number of servings from each group.
1) Vegetables and fruits - 7 servings
- Examples include fresh or frozen vegetables and fruits, leafy greens.
2) Grain products - 6-7 servings
- Examples include whole grain cereals, pastas and breads
3) Milk and alternatives - 3 servings
- Examples include yogurt, cheese and fortified soy beverages
4) Meat and alternatives - 2-3 servings
- Examples include legumes, eggs, and lean proteins such as poultry and fish.
Some other nutritional ideas to consider:
- It is always a good idea to check with your doctor as well, in case you require a specific diet for any medical conditions.
- Minimize the amounts of salt, alcohol and caffeine you consume. Make sure to stay hydrated by drinking plenty of water(2).
- Monitor for weight loss. Rapid weight loss has been linked to progression of the diseases causing dementia.
- Eat primarily a plant-based diet with low fat dairy and low-fat meat products.
- A glass of red wine each day may be beneficial; check with your doctor to ensure it does not interact with medications.
- Get your B12 level checked.
- If you are concerned about the nutritional quality of your diet, a multi-vitamin or nutritional supplement may be useful.
- Avoid using any high doses of single nutrients (e.g., high levels of vitamin A or folate) unless recommended by a dietician or physician.
- Eat fish (especially fatty fish like salmon) twice a week.
- Calcium (1200 mg) and vitamin D (800 IU) supplements are often required by older adults to meet their needs(3).
- When you go grocery shopping, make a list the day before. Consider shopping with a friend and during off hours, when the store is not as busy(4).
- Consider following a Mediterranean Diet. This diet (or lifestyle) focuses on minimizing your intake of saturated and trans fat foods, while emphasizing a high intake of fibre, fruits and vegetables combined with healthy fat options (such as olive oil). In several recent studies, adhering to a Mediterranean Diet has shown to reduce the risk of developing dementia by up to 48%. Adherence to the diet may also contribute to improved memory function and overall heart health(5)(6). For more information about how to incorporate a Mediterranean Diet into your lifestyle, visit the helpful links and resources section at the end of this topic.
What are ways to reduce stress?
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Dementia can result in many large changes to your life, which can be a very stressful experience. It is important to manage your stress levels in positive ways as stress can have a negative impact on cognitive functioning. There are a number of ways you can manage and control your stress levels.
- It is important to try to learn as much as you can about the disease. This will help you to feel more in control of disease. Record appointments using notes, calendars, journals or electronic devices.
- Try to prepare in advance when you will be confronting a new situation. It can help to decrease your anxiety.
- Ask for help and support when you need it. Identify who you can talk to about your situation. These supports may be family members, close friends or other people in your situation.
- Always try to look on the bright side of life and stay positive.
- Live in the moment.
- Practice meditation, relaxation and deep breathing. Listen to soothing music.
- Physical activity can improve your mood and reduce stress. It is also a great outlet for negative energy.
- Some people find their faith and spirituality important for managing stress(2).
Note: If your symptoms of stress persist, see your family doctor.
How can I increase my overall safety level?
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Thinking about ways to improve your safety is an important part of living a healthy lifestyle, especially as we get older. Many falls, accidents, concussions and injuries are avoidable. Consider the following:
- Install handrails on stairwells, organize your belongings to minimize clutter, put important items in your reach so you can avoid standing on stools and ensure your home has proper lighting.
- Protect your head by wearing a helmet when participating in activities that may affect balance.
- Ask your doctor to go over medications and any side effects. This is particularly important for medications that may affect your balance.
- Drive safely and always wear a seat belt.
- Focus on exercise that helps increase your strength, balance and flexibility(2).
For more ways to be safe at home and in the community, review the Safety section of this website.
Sources:
The information above comes from the following source(s):
(1) Compiled with permission from Alzheimer Society of Cambridge. (2009). Heads up for Healthier Living. Cambridge, Canada: Alzheimer Society of Cambridge.
(2) List adapted with permission from Alzheimer Society of Cambridge. (2009). Heads up for Healthier Living. Cambridge, Canada: Alzheimer Society of Cambridge..
(3) List reprinted with permission from Keller, H., Bocock, M.A. (2011). Nutrition and dementia: clinical considerations for identification and intervention. Neurodegenerative Disease Management 1(6): 513-22.
(4) Compiled with permission from Seniors in the Community Risk Evaluation for Eating and Nutrition Project (SCREEN). (n.d.). Food for Aging Well: A Guide to Healthy Eating for Older Adults. Guelph, Canada, University of Guelph: SCREEN.
(5) Scarmeas, N., Stern, Y., Mayeux, R., and Luchsinger, J.A. (2006). Mediterranean diet, Alzheimer Disease, and vascular mediation. Arch Neurol., 63, 1709-1117.
(6) Scarmeas, N., Stern, Y., Mayeuz, R., Manly, J.J., Schupf, N., and Luchsinger, J.A. (2009). Mediterranean diet and mild cognitive impairment. Arch Neurol., 66 (2), 218-224.
Helpful Links and Resources
Title of Resource | What it Offers? | Access to the Resource |
---|---|---|
Food for Aging Well: A Guide to Healthy Eating for Older Adults | Content helps to guide older adults in making healthy eating choices. | http://www.drheatherkeller.com/pdf/7327-Food_for_aging_well3.pdf |
Brain Booster | Puzzles, recipes and fitness tips to give your brain a boost. | http://www.alzheimer.ca/en/Living-with-dementia/BrainBooster |
Canada's Food Guide | A guide for healthy eating. | www.hc-sc.gc.ca |
Canadian Standards Association (CSA) | For information on helmet safety and suppliers. | www.csa.ca |
Mediterranean Diet | Find information on incorporating a Mediterranean Diet into your lifestyle. | Link to PDF |
3) Adapting leisure interests to meet new abilities
A growing body of evidence from many countries around the world is providing convincing support for the importance of an engaged and stimulating lifestyle to cognitive well-being as we age. Participating in meaningful activities is one of the best ways to remain engaged. Participating in meaningful leisure experiences can include enjoying a cup of coffee first thing in the morning, to participating in more challenging and structured activities with others in a specific setting. The key is to get involved with activities that make you feel good, because they can enhance your quality of life and help you to celebrate life. In the following section, you will find important questions and answers about how you can adapt your leisure interests to meet new abilities(1).
Frequently Asked Questions
What are the benefits of meaningful leisure experiences?
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Leisure means different things to different people, but leisure experiences that are individually meaningful can help you to live life to the fullest. Meaningful leisure can help you to:
- Find balance between relaxation and keeping busy.
- Provide a sense of freedom to escape stresses of everyday life.
- Allow room for individual expression.
- Provide an opportunity to laugh, have fun and enjoy life.
- Connect with family and friends.
- Provide an opportunity to grow and develop.
- Contribute to your community and make a difference
What are some of the personal challenges to leisure participation I may experience?
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Personal challenges to leisure participation may include cognitive changes (such as changes in memory and concentration, difficulty following directions and making plans), physical changes (such as lower energy, fatigue), motivational levels (such as lack of motivation to get involved with activities you once found valuable) and emotional responses (such as lower confidence, fear, anxiety, uncertainty). But there are things you can do to deal with personal challenges to leisure participation.
- For cognitive challenges, consider making a routine and being repetitive with your leisure choices. If you enjoy watching television, you can record your favourite shows and the channels they are on so you are able to watch them when you want and several times should you desire. As abilities change, consider adapting the activity so you can still enjoy it.
- When dealing with physical changes that may impact your leisure participation, make sure to get enough sleep each night and maintain a healthy diet. Reduce the amount of time you spend on an activity so as not to get overtired. If concerned about balance, consider purchasing walking poles.
- To stay motivated, participate in leisure activities you like to do. Try to remain optimistic. Engage in positive self-talk and try to take each day one at a time.
- When dealing with emotional responses, think about using leisure as an outlet to express feelings through art, poetry or writing. Believe in yourself, and try not to worry about what others might think(2).
What are some of the social challenges I may experience when participating in valued activities?
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Social challenges to leisure participation may include isolation, lack of support and changes in relationships. There are ways you can deal with social challenges to leisure participation.
- Social situations can be overwhelming and confusing, which can make you want to withdraw, avoid or isolate yourself from these situations. To avoid feeling overwhelmed, try to stay in quieter places when in social situations. Stay to the outside of the room. Try not to turn down invitations to social gatherings. Instead, think of ways you can make the experience less stressful and more enjoyable.
- Be honest and open with others about how they can support you in maintaining your valued activities.
- To get the support you need, contact a local support group through the Alzheimer Society.
- Stay open to new friendships.
- Relationships shift and change overtime. Make sure to talk to close friends and family about how you are feeling. Make decisions together(2).
What are some of the system and society challenges to leisure participation?
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System and societal challenges include lack of accessible and affordable transportation, stigma and misunderstanding, being silenced and a lack of meaningful opportunities. These challenges can affect your participation in valued leisure activities. But there are a number of options you can consider to deal with these challenges.
- When it comes to transportation, make sure to explore your options for public transportation. You can prioritize your trips to make them cost effective, ask friends and family for help, or explore volunteer driver options in your community. Some taxis and car services in communities offer reduced rates for older adults and those living with dementia.
- Appreciate your own uniqueness and stay open to new opportunities. Look into volunteer opportunities in your community as a way to get involved.
- To avoid feelings of being silenced, make sure to take the time to put your thoughts together, speak up and remember your input is valuable.
- If you feel there is a lack of meaningful opportunities in your community, speak up. Starting the dialogue can be one way to open up and begin building new opportunities(2).
What can I do to help myself in participating in meaningful leisure activities?
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Below are some ways to help you participate in meaningful leisure activities.
- Be intentional. Be honest with yourself and others about your health and what works for you.
- Surround yourself with positive and supportive companions. Recognize when you need support and make sure to talk to family and friends about the support you need. Surround yourself with people who make you feel good.
- Be open to new experiences. Consider different options to your valued leisure activities for variety.
- Be an advocate for yourself and the respect and dignity you deserve. Feel like you can make a difference and do not undervalue the difference you can make. Keep up to date with supportive technology like computers programs, helpful websites, virtual communities and technological aids.
- Celebrate your accomplishments and appreciate your journey(2).
What can others do to support my participation in meaningful leisure activities?
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Below are ways others can support "me", a person living with dementia, in participating in meaningful leisure activities.
- Think broadly, be knowledgeable and open minded.
- Be observant and really listen to me and ask me what is meaningful to me.
- Try to understand what leisure choices I prefer and encourage my participation in these activities.
- Believe in me and my potential. Encourage and support me.
- Enable me to find new ways of adapting my current leisure activities so I can continue to participate and enjoy them.
- Partner with me to create programs made specifically for me(2).
Sources:
The information above comes from the following source(s):
(1) Compiled with permission from Murray Alzheimer Research and Education Program. (2011). Living and Celebrating Life Through Leisure: A 'By Us For Us" Guide. Waterloo, Canada, University of Waterloo: MAREP.
(2) List adapted with permission from Murray Alzheimer Research and Education Program. (2011). Living and Celebrating Life Through Leisure: A 'By Us For Us" Guide. Waterloo, Canada, University of Waterloo: MAREP.
4) Using assistive technology to remain independent
Using assistive technology can help you to maintain your independence. Electronic aids such as alarm clocks, timers and cell phones can be useful in helping you manage the changes that are happening in your day-to-day life. In this section, you will find tips on how to use assistive technology to help you manage your daily life.
Frequently Asked Questions
What types of assistive technologies are available?
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Consider the following assistive technologies.
- Computer
- Speed dial on the telephone
- Timers you can set on ovens and watches
- Cell phones
- Alarm clocks
- Audio recording devices – which are used to record voices and can be helpful to recall thoughts, ideas or conversations. For example, you might find it helpful to bring an audio recording device with you when you go visit the doctor, so you can recall the information you went over during your appointment, or at a later date.
- Talking watches
- Talking books
How can I use assistive devices to maintain my independence?
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Here is how you can use assistive devices to maintain independence:
- To help remember significant dates and events, you can use an audio recording device.
- Use a dosette or blister packs to ensure that medication is being taken accurately.
- You can set an alarm clock to help you remember when to take medications or to remind you of appointments.
- Having an answering machine can help you to keep track of phone calls.
- You can use a large button telephone to program important numbers into your telephone on speed dial.
- Setting timers can help remind you to do household tasks, such as checking the laundry or something in the oven.
- Carry a cell phone. It is a useful way to stay connected to important contacts and it can serve as a guide if you need directions. Program important numbers into the phone and also attach these numbers to the back of the phone.
- Learn how to use a computer. It can be a helpful tool in writing reminder messages. You can also use the computer to access free games to do memory workouts.
- Use a Global Positioning System (GPS) if you are still driving(1). They can also be useful when out walking.
- A global tracking device brand to consider is EyezOn, which can be used to avoid the fear associated with the possibility of wandering. The portable personal device, can locate a loved one if they wander. The tracker can also be used with the EyezOn Web Portal, which alerts partners in care if their loved one leaves a designated safe zone. For more information visit the EyezOn website.
- Talking watches can help you better understand time.
- Talking books can also be useful if reading is becoming a challenge.
- At home medical alert services (e.g. Lifeline) can alert others if someone falls or needs assistance.
Source:
The information above comes from the following source(s):
(1) List adapted with permission from Murray Alzheimer Research and Education Program (2008). Tips and Strategies: A 'By Us For Us" Guide. Waterloo, Canada, University of Waterloo: MAREP.
Helpful Links and Resources
Title of Resource | What it Offers? | Access to the Resource |
---|---|---|
EyezOn | Global Tracking Device | http://www.eyez-on.com/EZMAIN/wandering.php |
Memo Touch | Messages, Reminders and Calender Tool | www.memotouch.com |
Lifeline | Home medical alert services | http://www.lifeline.ca/content/english/ |
5) Strategies for living alone
A large number of people diagnosed with dementia are able to maintain their independence and live by themselves for quite some time after diagnosis(1). This section contains important information about living alone. You may also find it helpful to look at the Using Assistive Technology to Remain Independent information above.
Frequently Asked Questions
What can I do to maintain my independence and continue to live alone?
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Consider the following strategies.
- If you are looking for different meal preparation options, you can look up your local Meals on Wheels, who deliver nutritious meals daily to your home. Some Senior's Centres and Day Programs also provide meal programs on a regular basis.
- Organize and label your closets and drawers around the house. This will make it easier for you to find things. Put clothing that goes together (outfits) on one hanger to reduce the anxiety associated with deciding what to wear. Label the outsides of drawers with written and visual clues to what will be found in the drawer.
- As a backup, leave a set of house keys with a neighbour you can count on or a family member that lives close by.
- When cooking, use a microwave, toaster or crock pot instead of the oven.
- Leave reminders for yourself around the house. These can range from "unplug the coffee pot" to "lock the door"". Make sure reminders are left in visible places.
- To get help with household tasks, such as housekeeping, preparing meals, transportation, etc., try connecting with a local Community Care Centre or Alzheimer Society chapter to help you find specific services in the community.
- Many banks have a "bank at home" service, which can help you to simplify the way you do banking. If your bank does not have this service option, let the bank manager know you have dementia and they can help you keep track of your banking.
- Arrange for all cheques to be deposited through direct deposit (e.g., Old Age Pension or Canada Pension).
- Arrange for a daily call or visit from either a family member or a friend. Many communities have services that will call or visit to check-in. Ask your doctor for more information(2).
- If you are driving, have regular trips with a trusted family member who, as a passenger, can observe your driving over time. Be open to his/her feedback about your driving so that you can prepare for, and accept, the need to stop driving.
- If you are driving, plan your errands ahead of time. Make a list of where you need to go. The list can help as a reminder for you. Also, others can help you with directions for the next destination on your list.
- When purchasing appliances like a microwave, look for one that has an easy to use touch pad and basic functions only. Cover symbols that you don't need to use with duct tape to cover up the extra symbols, and help you to focus on what is needed.
- If you are uncomfortable answering the telephone, let the voice mail record the messages. That way you can control when you listen to the message and how much of the message you listen to at one time. You can also repeat listening to the message(3).
Sources:
The information above comes from the following source(s):
(1) Compiled with permission from Alzheimer Society of Canada. (2003). Just for you. Toronto, Ontario, Canada: Alzheimer Society of Canada.
(2) List adapted with permission from Alzheimer Society of Canada (2003). Just for you. Toronto, Ontario, Canada: Alzheimer Society of Canada.
(3) Compiled with permission from de Witt, L. (2006). On the felt time and space of living alone with dementia. (Unpublished doctoral thesis). McMaster University, Hamilton, Ontario, Canada.
6) How to meet others affected by dementia
One of the best ways to get support regarding dementia is to connect with other people who are experiencing the same thing. Below you will find helpful information about connecting and meeting others living with dementia.
Frequently Asked Questions
How can I meet other people living with dementia?
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Creating a network of support, you can rely on and talk to is an important consideration when living with dementia. Connecting with other persons with dementia in particular can be very beneficial. They can be a good outlet to talk too. They can also provide you with reassurance, comfort and support. Contact your local Alzheimer's Society chapter to find out about supports in your local area. Attending local support groups is a great way to build connections with other people experiencing dementia.
You might also want to consider connecting with an internet support network, such as the Dementia and Advocacy Support Network International (DASNI). You will have around the clock access to an online support. It can be a great way to find and exchange important information. It can also be a helpful way to find out about local support groups, counselling groups and the local Alzheimer Society chapter in your area. You can use the support network to find other helpful online links and you can advocate for services for people with dementia, while building awareness and promoting respect and dignity for persons with dementia(1).
Source:
The information above comes from the following source(s):
(1) Compiled with permission from the Dementia Advocacy and Support Network. (n.d.). Retrieved from http://www.dasninternational.org/
Helpful Links and Resources
Title of Resource | What it Offers? | Access to the Resource |
---|---|---|
DASN International | An internet based support network for those diagnosed with dementia. | www.dasninternational.org |
Alzheimer Society of Ontario | List of local Alzheimer Society Chapters | http://www.alzheimer.ca/en/on/postal-code |
7) Becoming a peer mentor or advocate
This section contains frequently asked questions and answers to help you find information about becoming an advocate and / or peer mentor. People with dementia can often experience an identity crisis, as they negotiate the changes they are going through and adjusting too. Becoming a self- advocate or peer mentor can help to make sure your needs are met. Becoming a social advocate in support of the dementia cause can provide a sense of purpose and meaning in life as you work with others to raise public awareness of dementia and the supports needed for quality of life. It can also help you to realise you are the same person as before your dementia diagnosis, which is an essential realisation to leading a full life(1).
Frequently Asked Questions
Why should I become a self-advocate?
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Being a strong self-advocate is one way you can help yourself and make sure your needs are met. Speaking up when you have questions or concerns can boost your self-image, leading to more fair treatment, higher levels of respect and greater consideration towards your needs(1).
What are ways I can advocate for myself?
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There are a number of ways you can begin the process of advocating for yourself, such as:
- Make sure doctors and other professionals explain information in a way that you understand. This may include the use of diagrams or explaining things more slowly.
- Volunteer with the local Alzheimer Society chapter(1).
- Try to ask effective questions to make sure you get the information you need. A few techniques you can use when asking questions include:
- Have a clear focus to your question. Consider what you want to find out from asking the question.
- Ask questions in a place where you feel safe and secure.
- Start off by asking questions that are more broad, working your way towards more specific questions.
- Be an active listener. When you receive an answer, try sharing the response in your own words. This will help you retain the information.
- Have confidence in yourself(2).
Why should I become a group or social advocate for the dementia cause?
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A group or social advocate for the dementia cause is a way for families, friends and members of the community to connect and come together, in support of persons with dementia. Group advocates work to ensure persons with dementia and their partners in care have access to proper services in the community. Advocates also focus on making sure the voices of persons with dementia and their care partners are being heard and valued.
What are the ways I can advocate for others and the dementia cause?
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You can volunteer for your local Alzheimer's Society chapter. Volunteering is a way to build new friendships and your self-image, by working and helping others(1).
What is a peer mentor?
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A peer mentor also plays an advocate role. They may offer moral support, helping to explain issues through open discussion and questions to other persons with dementia or their partners in care. Becoming connected as a peer mentor, or within a peer mentor group, is a great way to feel valued and to feel part of the community, whether you are being helped by or helping others(1).
How can I become a peer mentor?
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There are several ways to become a peer mentor in your community, which include:
- Volunteer with the local Alzheimer Society chapter and their day programs.
- Offer to speak at a local Alzheimer or community event.
- Connect with other persons with dementia in your community through support groups(3).
Who else can be an advocate?
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Anyone can be an advocate!
- Family and friends can act as advocates because they are often people who closely understand what you want and need.
- Alzheimer Societies provide support through information and a variety of resources such as local contacts (e.g., advisors and medical experts) to deal with early stage problems. They can also connect you with potential advocates if your family does not live nearby.
- Medical professionals can assist you in connecting with a local peer support group and the Alzheimer's chapter closest to you. This can help decrease your feelings of isolation, depression and frustration(4).
What should I look for in an advocate?
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Look for the following in an advocate:
- Someone who shares your goals.
- Someone who is caring, honest, trustworthy and capable.
- Someone who is willing to listen and understand.
- Someone who understands your needs and wishes.
- Someone who can communicate for you when you are not able to.
- Someone who respects your voice and lets your voice be heard as often as possible(4).
Sources:
The information above comes from the following source(s):
(1) Compiled with permission from Alzheimer Society of British Columbia. (n.d.). Memory Problems? British Columbia, Canada: Alzheimer Society of British Columbia.
(2) Compiled with permission from the Murray Alzheimer Research and Education Program (MAREP). (2005). Self-Advocacy Workshop. In A Changing Melody 2005 Proceedings Manual. Waterloo, ON: MAREP.
(3) List compiled with permission from Murray Alzheimer Research and Education Program. (2008). Tips and Strategies: A 'By Us For Us" Guide. Waterloo, Canada, University of Waterloo: MAREP.
(4) List adapted with permission from Alzheimer Society of British Columbia. (n.d.). Memory Problems? British Columbia, Canada: Alzheimer Society of British Columbia.
8) Being supported in the workplace
If you are employed when you are diagnosed with dementia, it is important to consider how the diagnosis will influence your working life. It is important to begin to think about what changes you will need to make on the short term and looking in the future. By planning for the future you can remain supported in the workplace and continue to manage your work life.
Frequently Asked Questions
What can I do if I am having problems at work?
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If you are having difficulties at work, you may consider contacting a legal expert to discuss your work situation and how this impacts your current savings and future earnings and pension. Once you know about your legal and financial options, you will be in a better position to talk to your employer about your dementia diagnosis. It is a good idea to bring someone with you, like a family member or friend as a witness, when you speak with your employer because they can help to explain your symptoms. Sometimes a few small changes in the environment can make a big difference and help you at work. You may also consider cutting back on the number of hours you are working a week. By decreasing your overall responsibilities, you may be able to continue working, but a shorter week or number of hours(1).
What do I do if I own my own business?
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If you have the resources, you may consider hiring a personal assistant to help you manage your business. You can also consider assistive technologies, such as alarm clocks, voice recorders and computers to help you remain in the workforce. For more information review the Assistive Technologies information. The most important consideration, if you own your own business, it to begin the process of planning for a time when you may not be able to work. For more information on ways to begin planning, visit the Planning Ahead section of this website.
How can my workplace support me after a diagnosis of dementia?
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There are a number of ways your workplace can support you after a diagnosis of dementia, which include:
- Reducing the number of hours you work per week or day.
- Have a co-worker designated to provide support and assistance for you at work.
- Considering the idea of a job share with another employee to break up tasks.
- Assigning responsibilities and tasks that are manageable and not overly challenging.
- Determining a specific work schedule to help with balancing work, family and social activities.
- Accommodate your need for more frequent breaks, to regroup and clear your mind(2).
How can I go about making the decision to stop working?
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At some point, it is likely you will make the decision to stop working. It is important when you make this decision, that you give it time and careful consideration. Try not to make any spur of the moment decisions and try to weigh all of your options. To make sure you are aware of which entitlements and benefits you have earned, it may be helpful to speak to a financial advisor or solicitor about your situation. A financial advisor can also provide you with information about any sick leave, disability benefits, insurance with a disability component and any government benefits you may be entitled too(2).
How can I use my skills and remain connected in the community once I stop working?
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If you are no longer able to work, you may consider volunteering as an option to stay connected within the community. Volunteering can be a great way to use your skills and remain actively participating in your field(3).
Sources:
The information above comes from the following source(s):
(1) Compiled with permission from Alzheimer Society of Canada. (2003). Just for you. Toronto, Canada: Alzheimer Society of Canada.
(2) Compiled with permission from Murray Alzheimer Research and Education Program. (2008). Tips and Strategies: A 'By Us For Us" Guide. Waterloo, Canada, University of Waterloo: MAREP.
(3) Compiled with permission from Alzheimer Society of Canada (n.d.). Shared experiences: Suggestions for those with Alzheimer disease. Toronto, Canada: Alzheimer Society of Canada.
9) Managing behaviours and triggers related to dementia
Triggers happen when your "buttons are pushed" or in situations where you may have difficulty thinking and perceiving. They can result in feelings of stress and agitation. It is important to be able to recognize and acknowledge triggers do happen and determine what your own individual triggers are. That way you can learn how to handle them more effectively when they do happen. In this section, you will find information on dealing with triggers(1).
Frequently Asked Questions
What are triggers?
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We all at one time or another have experienced a knee jerk reaction to something - something that caused us to become agitated and stressed. In most cases these reactions are caused by something that makes us uncomfortable or a need we may have that is not being addressed – something known as a "trigger". Usually we are able to manage our reactions. We can quickly process what is happening and filter our response.
For people living with dementia or memory loss, it may be more difficult to control reactions and responses than it once was. In order to reduce the chances of an unwanted reaction happening and also to learn how to respond to them and cope more effectively when they happen, it is so important to understand triggers and the causes of them. This can be very difficult. For example, sometimes you might not even recognize or understand that something has happened to make you react in a certain way.
Triggers can also be important in alerting family members and other care partners about the experiences of those living with dementia. They are an important means of communicating an unmet need or aspects of the experience that need to be addressed. It is important for care partners to be able to identify triggers so as to prevent them and when they do happen, work hard to understand the meaning of the actions. Again, triggers tell us a lot about the experiences of persons living with dementia(1).
What are some common triggers?
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Some common triggers of unwanted reactions include:
- Physical factors
- A urinary tract infection or other undetected infection
- Constipation
- Pain or discomfort
- Being hungry or thirsty
- Fatigue
- Social situations and interactions with others
- Crowds and loud noise
- Being rushed and not being included in plans
- Being tested, quizzed or pushed for answers
- Being judged or put down by others; treated like a child
- Not being listened to or included
- Being dismissed by others
- Lack of social supports
- Others talking over you
- Verbal communication
- Difficulty finding words and having people jump in to quickly to finish your sentence
- Communicating with others like being expected to make small talk, people talking too quickly, too loudly, or at the same time
- Difficulties expressing yourself like when you are involved in long conversation
- Your physical environment
- Room or outside temperature is too hot or too cold; bad weather or dressing inappropriately
- Feeling the pressures of travelling and not being in control (being a passenger) when there is bad weather or traffic
- Lighting in a room
- Being in an unfamiliar environment
- Emotional needs not being addressed
- Grief and loss
- Boredom
- Not having feelings acknowledged and recognized
- Needing human contact, love and understanding
- Feeling lost
- Change of memory and ability
- Misplacing items
- Losing the ability to do something that you once were able to do, for example tie a tie or make change at a store
- Mismatch between a task you are asked to do and your abilities in the moment
- Disorientation(2)
How can I manage my triggers?
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There are a number of steps that can be taken to help manage triggers:
Step 1: Acknowledge that triggers exist.
The first step in understanding your triggers is to acknowledge that triggers exist and that unwanted reactions happen as a result. In many ways, triggers can be meaningful in that they provide care partners with information that something is wrong.
Step 2: Ask a trusted family member or friend for assistance.
Once you have become upset or agitated, it is difficult to process your thoughts on what has caused you to become upset, but trusted family member and friends can assist you with this.
Yes, sometimes our reactions can be embarrassing. But the advice from other persons with dementia is that you need to reach beyond the embarrassment in order to ask for help in identifying what your triggers are and working through them.
Step 3: Write down everything that happened.
When you experience an unwanted reaction, write down everything that occurred, because sometimes you may not be able at that moment to identify what may have caused the unwanted reaction. Once you have had time to clear your thoughts, you can reflect on the event and get a clearer idea of what happened.
Step 4: Identify Triggers so that they can be avoided.
Once you have acknowledged that sometimes unwanted reactions can happen as a result of a trigger, you can confide in a trusted person, and can document what happened, you can begin to identify some of our triggers. See section above for examples of common triggers you may experience.
Step 5: Identify strategies to manage unwanted reactions if they cannot be avoided.
If you are not able to prevent or avoid triggers, and experience an unwanted reaction, it is a good idea to have strategies to manage or respond to them more effectively when they do happen.
Understanding triggers and the causes of them is important not only for you, the person living with dementia, but also for family members and other partners in care. Family partners in care can help to minimize triggers and agitation by listening to you, their family member with dementia, about what you need and by providing gentle assistance. See section below for tips and strategies for managing triggers identified by persons with dementia(1).
What are some general tips I can use to help manage triggers?
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The strategies used to manage triggers sometimes depend on the type of trigger. For example, if large crowds and noise are causing distress and discomfort, then leaving the area or finding a quiet place to escape for a few minutes can help. If the way others are treating you is frustrating, it is important to be honest with them about how you are feeling and discuss with them what you need. If you are feeling frustrated with an activity you were always able to do but now find more difficult, try finding a way to alter the activity(1).
There are also general strategies to help deal with triggers. Some ways to help manage triggers in your daily life can be as simple as doing something to shift your attention away from the trigger. Other options that can help you refocus and relieve feelings of stress and frustration include:
- going for a walk
- talking to a friend or family member you trust
- meditating or listening to soothing music
- practicing deep breathing
- letting others know how you are feeling
- step away and count to 10
- do something that will distract you
- go to a quiet place, close your eyes and relax(2)
Public areas such as shopping malls and restaurants can often be loud and overwhelming. What can I do to manage crowds and loud noises?
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When you find yourself bothered in a loud space, remove yourself from the space. Try to avoid public places at peak times. If you are at a restaurant and you find it loud, you can ask the manager to turn down the music or ask to be moved to a quieter part of the restaurant(1).
How can I avoid feeling rushed?
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Whenever you are going out, make sure you always allow yourself plenty of time to get ready. You can also use a calendar to keep track of events on a day-by-day basis. The best way to avoid feeling rushed is to try to plan ahead when possible. Put times on a note so you know what time you should start getting ready, time you have to be ready, and when you have to leave. Focus on one task a day or at a time(1).
What can I do to make shopping trips and restaurant ordering easier?
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Write down what you need to purchase, or what type of food you like before you go to the store or restaurant. You can also ask a trusted family member or friend to help you when you are placing an order, paying or making change(1).
How can I express myself more effectively with others?
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If you are having difficulty finding words or expressing yourself, make sure to let others know how you are feeling, pause and give yourself the time to collect your thoughts.
If you are feeling uncomfortable in a situation where you need to make small talk, or other people are talking too loudly or too quickly, you can ask people to slow down their speech, to give you extra time to respond, and/or move to a less distracting space. You can also try to participate in smaller group conversations or a one-on-one conversation. If you are feeling uncomfortable, you should also feel free to leave conversations you find overwhelming(1).
What can I do to manage triggers in my environment?
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A room's temperature, whether too hot or too cold, can be a trigger. Try to plan ahead for different conditions. Bring a sweater or wear layered clothing. Fans can also be a good way to maintain a more consistent temperature in a room(1).
Being a passenger in a car when there is traffic or bad weather can be a trigger. If this is a trigger for you, try to avoid being in the car if there is bad weather. Also, consider how you are feeling on the day to decide if you should go for a drive. You can also try relaxation techniques like closing your eyes and practicing deep breathing to relax and make yourself more comfortable in the car(1).
How can I better manage the changes in my memory and abilities?
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Losing or misplacing items can be big source of frustration. To manage this trigger, try organizing your belongings with labels and identifying a set place for each item. It is also a good idea to focus on doing one thing at a time. When you go shopping, write out the directions and tasks to be performed before you leave. Shop with trusted family and friends and get to know staff at the stores you shop at so they can help you if need be. Set up tabs at the stores and restaurants you frequent the most(1).
Not being able to do something you used to be able to do can be frustrating and can be a trigger. Be kind to yourself, make sure to get enough sleep and try not to sweat the small stuff. Slow down, focus on one thing at a time and have realistic expectations. If a task is frustrating, step away for a while and try again later or be comfortable asking for help. Find new or adapted ways to do valued activities such as doing easier crosswords or jigsaw puzzles(1).
What are ways to deal with emotions?
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Feelings of frustration, stress and pain can happen when you feel you are not being listened to or included, degraded or judged. Loss and grief can also be common experience for those living with dementia and it is important to acknowledge one's grief. All of these feelings can act as triggers. Try removing yourself from situations that cause you these types of responses or avoid these situations entirely. Make sure to get lots of rest and or try sharing your feelings with friends. You can also try relaxation techniques to reduce anxiety, such as listening to music, exercising, reading, deep breathing and meditation. Caring for a pet can also have a calming effect, because they give you comfort, companionship and love. If you are experiencing feelings of loss and grief it is important to acknowledge these feelings. For more information on dealing with loss and grief, review the Living and Transforming with Loss and Grief topic, under the Emotional Wellbeing section(1).
Sources:
The information above comes from the following source(s):
(1) Compiled with permission from the Murray Alzheimer Research and Education Program. (2007). Managing Triggers: A 'By Us For Us" Guide. Waterloo, Canada, University of Waterloo: MAREP.
(2) List reprinted with additions with permission from Murray Alzheimer Research and Education Program. (2007). Managing Triggers: A 'By Us For Us" Guide. Waterloo, Canada, University of Waterloo: MAREP.