“My sister is only 55 years old, physically fit, and younger than the large majority of people who are living with the disease. She’s really a minority. Everything in terms of Alzheimer’s care in our community is geriatric-focused. Because of her age, she’s even more isolated.”
Once every two weeks, Kim volunteers at the local food bank. For anyone who may come across her, she would look like any other 55 year old woman. She’s strong and fit, and because she’s living with early-onset Alzheimer’s disease, the limitations that she’s experiencing aren’t always apparent.
“The Métis Nation of Ontario helps us by facilitating transportation so that she can volunteer,” explains her younger sister, Dawn, “and the CCAC sends a personal support worker to support her while she’s there. Once every two weeks, that’s what she does, and it helps her to have some meaningful activity.”
Kim is an educated woman with a professional career managing the blood bank at a local hospital. When two regional hospitals merged, the nature of her work changed drastically and she began to notice some limitations in her ability to adapt. She ended up electing to get some testing done at that point, believing it was stress-related. She breezed her way through the initial tests.
“Her family doctor didn’t seriously consider Alzheimer’s disease. It came quite a long time to really know what her issues were – about 2.5 to 3 years of not really knowing what’s wrong. She even maintained her job by working extremely long hours and triple-checking her work. Ultimately, the doctor referred her to a Memory Clinic who said, ‘What you’re experiencing is the progression of early onset Alzheimer’s.’ And in the past 5 years, it’s progressing even more.”
Given Kim’s age, it was hard to believe. “My sister is only 15 months older than me,” explains Dawn. “We’ve always been very close, because we’re so close in age.”
At only 50 years old when she finally received a diagnosis, Kim has struggled to find meaningful, appropriate ways to stay active and engaged. “She’s really a minority. Everything in terms of Alzheimer’s care in our community is geriatric-focused. Because of her age, she’s even more isolated.”
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Early-onset dementias can lead to social isolation. “For half a year, she’d go to an old age home once a week for morning activities and for lunch, both to help us care for her, but also in hopes that she’d find an activity that she enjoyed. But she found it very depressing. Everyone was old and would fall asleep. It was no surprise when she decided she didn’t want to go anymore. Who could blame her? In the same way, I couldn’t simply take her to an age-appropriate activity at the YMCA because she requires so much direction.”
Stuck in between two worlds, Kim’s circumstances are not unique. In Canada, 16,000 people under the age of 65 are living with dementia. As public knowledge of the impacts of the disease increase, and the tools of diagnosis become more refined, earlier diagnoses challenge us to think beyond many of the stigmas associated with dementia.
“There’s a lot of misinformation about Alzheimer’s disease that doesn’t help her situation,” explains Dawn. Not the least of which is the fact that when someone doesn’t “look sick”, we may overlook that person’s needs in public settings. On the other hand, Dawn has noticed that her sister has lost a lot of friends because no one seems to know how to approach her. “Old friends of hers would ask me if she’ll even remember their names, for example. For Kim, it might take her a minute to remember it, but that has more to do with progression. She hasn’t lost everything yet. There’s a huge stigma and even family members find it hard to accept that her world is changing.”
Without many resources in her community, Kim and her family have found it difficult to navigate the agencies that do offer support. Not knowing where to turn, Dawn has developed a relationship with her local Alzheimer Society. “The Alzheimer Society has been a God-send. Without them, we’d be totally lost. From the very first point of contact they’ve been so supportive. That’s where I go for support, and for ideas to help better support my sister.”
“What Kim needs more than anything is a reason to be. Her confidence is low because she’s isolated and because of the progression of the disease. She is finding it more difficult to do the things that she used to do. I don’t know how to help her get back the feeling of being helpful; a meaningful occupation so that she feels like she can offer something important.” For her sister, Dawn hopes for a future where people with early-onset Alzheimer’s disease are part of the equation.
Given the challenges that her family has experienced to find appropriate social and occupational outlets in her community, Dawn imagines a world where people in her sister’s circumstances are better supported. “An ideal set-up would be some sort of small community build with Alzheimer’s and other dementias in mind, including those with early onset. My sister is only 55 years old, physically fit, and younger than the large majority of people who are living with the disease. It doesn’t make sense to assign her the same type of care that you would to someone who is 80.”