Can you live well after a diagnosis of dementia?
Director, Community Support Services & Personal Support Services
Living well with dementia has been my motto, both in my work at Carefor, leading programs that support people living with dementia and their care partners/caregivers, as well as in my personal life. I do think you can live well with dementia, but it is work and takes effort.
Like many, my husband and I never thought we would have to think about life with dementia, but when he received a diagnosis of Young Onset Dementia - Probable Alzheimer’s three years ago at the age of 57 suddenly we did. I often think about the day we heard the diagnosis and what it felt like; it is incredibly difficult to describe. There was a part of us that was relieved to finally know after three years of seeing specialists what it was, but I can’t pretend our lives haven’t changed.
The person who shared this information with us was compassionate. My husband was told to go get his affairs in order, stop doing financial work, and get counselling, but what seemed to be missing in this advice was about the things we can do to live well.
I recall coming home from the appointment, walking in our door, and my husband saying, “So I guess that’s it.” When he was ready to, we talked about how we would work to live with dementia/Alzheimer’s. I encouraged him to tell people about it and he noticed it got easier each time he did. We accepted it more.
Over the years of working with people living with dementia and their families I learned from them that we needed to have the right attitude about how to support each other following a diagnosis of dementia to be able to live our best lives.
How has dementia changed our lives?
- We have to try to be more patient with each other (this is easier and harder on different days)
- Travel is more challenging
- Social events are more challenging
- Fatigue is a real thing
- It can be lonely and isolating
- Routine has become more important than ever
- Daily life changes (increased frustration, changes in confidence)
- Some people don’t know what to say or do, so they pull away - people feel sad for us. (We don’t want or need that.)
- It affects more than just the person living with dementia; your whole family lives with dementia
- We use technology more than ever, such as Amazon-Alexa, Apple products and wireless speakers
- We have met some amazing people we likely otherwise would have not met
- We have support of our families, friends and colleagues and others
What can communities, family, friends and co-workers do to support living well with dementia?
A big part of a person living well with dementia comes from his or her support system. Encourage a focus on the things that a person can do rather that the things they might need help with. It helps to talk openly and work to accept the diagnosis and support from those around you (families, community, colleagues) - not only for the person living with dementia, but also their care partners.
- See the person, not the diagnosis
- Encourage education about living with dementia
- Ensure the voice of the lived experience stay present in planning. To do this, create ways that a person living with dementia or their care partners can be present in working groups – consider timing of meeting, location, last minutes changes or long meetings.
- Change the messaging at time of diagnosis and ensure it includes suggestions on how to live well
- Form and use peer support groups
- Tax benefits that are real and take into consideration the real needs
- Make technology available and show people how to use it to improve autonomy and independence
- Create standards in training of staff
- Change the language around living well with dementia
- Fully fund Dementia Strategy (including the voice of lived experience in planning)
- Hobby for flexible & sustainable funding not just for organizations or programs but for families (self-directed funding)
Here we are three years after diagnosis and we are living well with dementia. My husband and I (with support from our families, friends and workplaces) signed on to be advocates for Alzheimer’s Society of Canada on their campaign to reduce the stigma that exists around a diagnosis of dementia. You can see our story here and the story of others https://ilivewithdementia.ca/. My husband has been able to continue to work, to drive and to be an active advocate, only recently changing to part time work.
We travel, spend time with our children and grandchildren, show patience with each other, take breaks when we need them and help to change the way people think about a person living with dementia. When we signed on to be partners in life we signed on to support each other. My role does not change just because of a diagnosis. We have supported and cared for each other for years and plan to continue to do this.
What can you do to live well after a diagnosis of dementia?
- Create a routine
- Write lists, keep things in the same place, use technology (if it helps)
- Have patience and take breaks
- When the person living with dementia is speaking don’t interrupt (they may not be able to recall)
- Visit often and consider shorter visits with fewer people
- See the person not the diagnosis
- Help family and friends accept when plans gets cancelled because today is just not the best day
- Encourage the person living with dementia not to isolate themselves and stay actively engaged
- Try a day program or support group (online or in person)
- Share - Tell people and share the diagnosis. It makes it easier for you and helps people see living with dementia differently.
- Accept changes as they come (this is easier to write down that is to do)
- Eat well, stay active
My husband is my person and Alzheimer’s doesn’t change that. We are in this together and we will do our best to live the best lives we can. We try not to look over our shoulder and accept changes as they come with as much grace and understanding as we can. It’s important that our community, friends and government help us to do that. We work hard each day to live our best lives. My husband often says, “You can live with dementia, but you do have to live like you’re living the diagnosis."
Carefor’s programs and supports for living with dementia
We are fortunate at Carefor to be able to support people in the communities we work in to live with dementia. We have respite programs like the Guest House and adult day programs where people living with dementia can come together while their care partners/caregivers can take time to rest or catch up on a task they need to get done. I have worked at Carefor for 10 years and have been lucky enough to work with some amazing teams who support people using our programs to live well every day after a diagnosis of dementia.
At Carefor, we have grown our programs over the years and in the past year two years we have created a day program in Orleans, 50 additional spaces at our existing day programs, and have adapted our program at Guest House to have greater flexibility. In October of 2019, in partnership with Carleton University, we also opened The Club, a day program for people living with Young Onset Dementia. Club members are encouraged to seek a personal connection with others experiencing a similar life experience while being supported in a recreational setting (peer to peer connect is a key component). The programming is flexible and members co-design their day with staff based on their needs, abilities and interests. Members have access to a wide variety of facilities and activities, such as swimming, badminton, basketball, fitness classes and use of an indoor track for walking/running, additionally programming themes include educational topics, art and music. Our team supports Club members ensuring meaningful activities, self-confidence and independence.
For more information about The Club, contact firstname.lastname@example.org.
For more information on our journey of living well with dementia: https://ottawacitizen.com/news/local-news/yes-i-live-with-dementia-let-me-help-you-understand