Dementia Aware: what people with dementia need to know to live well with dementia
Dementia is not a life sentence; it is just another detour in your life’s journey, and you can continue to live a full and happy life. As the dementia changes, you will have to compensate for loss, enhance your abilities, develop talents and create a new future invested with hope and meaning. It will take a little work, a lot of patience and a willingness to accept support, but you can live a meaningful, purposeful life. Do not allow your mind to imprison you; do not surrender to the dementia. We live our life through stories, and we all have a story, so why not consider dementia as an unfolding narrative of a new chapter of your life story.
Researchers and people with dementia both agree that it is important to continue to look after your health, your mind, your body and spirit, and to stay engaged after a diagnosis of dementia.
Living Well Care Plan:
Despite receiving a diagnosis of dementia, it is still important to look after your health. The healthier you are, the less likelihood of visits to the hospital, of developing new medical conditions, of experiencing delirium. To keep healthy, you should:
- Eat a healthy diet – follow the Canada Food Guide or recommendations of Doctor/Dietician
- See Doctor regularly
- Take your medications. Discuss any vitamin supplements or herbal preparations with your Doctor
- If you have a pre-existing medical condition: diabetes, high blood pressure, follow your healthcare plan
- Stay hydrated, drinking 6-8 glasses of water daily helps prevent constipation, bladder infections, decreases risk of delirium (3)
Keeping the mind and body active and eating a healthy diet helps you feel good, think more clearly and may even slow down changes in the brain. Activities that stimulate the brain include reading, talking with others, singing, puzzles, playing cards. If you are no longer able to read, try books on tape.
Physical activity not only keeps you fit but also helps you feel less stressed and more energetic. If you do not exercise regularly or are trying a new activity, remember to talk to your Doctor first. Also, if you are unable to do an activity you previously enjoyed e.g. golf, do not despair, with some creative planning, any activity can be changed to suit your strength and abilities. For example, if you are unable to play a full round of golf, try 9 holes, or mini-golf. If you are wheelchair dependent, try bocce ball or tai chi.
Continuing to participate in day to day activities, visiting with family/friends, socialising and doing activities you enjoy can instill feelings of confidence and self worth, of belonging and being a part of your community. Being engaged also helps to prevent further decline, distract from sad/negative feelings, and get pleasure and meaning in life.
Many people with dementia say that they have chosen to not worry about their future, but rather strive to appreciate and enjoy what they have today (Downs & Bowers, 2008). There will be good days and bad days, that’s life. Try to keep a positive outlook, smile, laugh, share stories, join a support group, attend church (4)
Maintaining a routine is a valuable strategy to reduce the complexity of every day life. Familiar plans and activities allow people with dementia to rely on their embodied skills, a kind of ‘automatic pilot’ that requires less explicit effort (Nygard & Ohman, 2002). Slow down and allow yourself time to complete a task, make lists, accept offers of help. Remember, you don’t need to ‘do it all’.
Support can be from a healthcare agency, a friend, Alzheimer Society of B.C., a homecare service. At first, you may not need any help, but over time, you may find you tire more easily, take longer to do a task or have difficulty completing a task. Accepting support is not a sign of weakness or laziness; the willingness to accept help means that you are taking control of your life. Also, by accepting support, you will have more energy and time to do the things you enjoy Support can be accepting a ride to the store, your home cleaned, lawn mowed, or help with bathing or medications. These small acts will help you remain independent at home and to spend more time with those you love.
Take control of your life. Make legal, healthcare and financial decisions, talk to your loved ones about your wishes. Keep a journal, a video recording, a memory book, write letters to your loved ones (1,2).
- Make a will
- Power of Attorney
- Representation Agreement
- Advance Directives
Living at home requires a balance between minimizing risk and maximizing independence. Many people with dementia have found assistive technology to be helpful, and there are devices that provide prompts and safeguards which can help you be independent and safe in your own home.
Assistive devices include:
- medication reminders
- cooker monitoring, smoke and CO2 detectors
- speaking clocks, electronic calendars, preprogram telephones
- raised toilet seat, hand held shower, bath seat
- Medical alert system, fall detection alert: medicalert.ca/safelyhome.com; www.lifeline.ca
For more information see Dementia Aware articles:
- Financial, legal, health care matters
- Dementia ‘to do list’
- Dementia & Delirium
- Dementia and Emotions