While his wife and friends are busy at work, Sylvain Lepage spends much of his time secluded at home. The 48-year-old was forced to take early retirement and relinquish his driver’s license when he was diagnosed with a form of young-onset dementia in October. He stopped seeing his friends and quit attending family gatherings, as his condition sapped his motivation to leave the house.
But on Tuesdays, Lepage gets a break from his social isolation.
As a participant of a new weekly recreational program in Ottawa for adults with young-onset dementia, he spends his Tuesdays playing badminton, swimming, weight-training and having fun with his peers.
“We laugh. We laugh all day long,” he said. “We all know what [kind of dementia] we have. But the nice part is [that] by coming here, we forget about it. You don’t walk on eggshells because you’re not afraid to say, ‘Did I ask that already?’ ”
The program, officially launched last week by the non-profit Carefor Health and Community Services and Carleton University, provides an opportunity for adults with young-onset dementia (those ages 65 and under) to socialize and engage in physical activity at the university’s athletics facilities, while offering respite for those caring for them. But the scarcity of such programs highlights the unmet needs of individuals with dementia in their 40s, 50s and early 60s.
Adults with young-onset dementia account for an estimated 2 to 8 per cent all dementia cases, according to the Alzheimer Society of Canada. But not only is this cohort typically more physically active than older adults with dementia, they’re at a different stage of life, and thus, have different financial and family circumstances, said Robin Meyers, a director at Carefor. Some may still be working or adjusting to giving up their jobs. They may also have mortgages, partners who still work full-time and children at home or in college.
To have young-onset dementia, “it’s such a dramatic change,” she said. “They’re functioning in their life fairly normally, and all of a sudden, something’s happening and they can’t do a lot of things they used to do.”
Meyers and her team started the program after seeing a growing number of people under the age of 65 with dementia attending Carefor’s adult day programs. In addition, Meyers’s husband Keith Barrett also has a type of young-onset dementia, and although he is not a participant of the new program, the couple has a network of friends in a similar situation.
“We wanted to see something like this be available for the people that we knew because there was nothing,” she said.
The program takes inspiration from one in Calgary, called YouQuest, designed to offer meaningful activities, peer support and a sense of community for this cohort. Once a week, supported by a team of volunteers and recreational therapists, participants of YouQuest spend the day doing a fitness activity of their choosing, such as yoga or working out with gym equipment, sharing lunch and coffee, and going on day hikes or outings to the zoo, the library or museums.
YouQuest’s co-founder Cindy McCaffery said her program has been a “lifesaver,” for herself and her husband John, who was diagnosed with young-onset dementia at age 48. After he gave up his job due to his illness, he lost his work friends and went from being active and cycling everyday to sitting at home in the couple’s basement watching Star Trek.
“Then he would get crabby because he’d have cabin fever,” McCaffery said, explaining YouQuest gives him something to look forward to, and gives her peace of mind while she’s at work.
The program, however, cannot keep up with demand. YouQuest currently has about a dozen participants, and nearly double that number on its waiting list, McCaffery said.
While there is no indication that the incidence of young-onset dementia is on the rise, more people are being recognized with it now due to growing awareness of these conditions, said Adriana Shnall, program director of Baycrest@Home, a project of Toronto’s Baycrest aimed at delivering virtual programming and services for older adults and their families. But even so, it takes an average of five years to get a proper diagnosis, as symptoms are commonly mistaken for other conditions, such as depression or menopause, she said.
One of the challenges of providing programs and services for people with young-onset dementia is they can require very different needs, depending on the type of dementia they have, Shnall said. For example, those with young-onset Alzheimer’s disease, typically characterized by memory loss and problems with cognitive function, may be more easily integrated in programs designed for older adults. By contrast, those with frontotemporal dementia, a common category of dementia among younger adults that often starts with personality changes and disinhibition, are more likely to prefer keeping physically busy and sticking to routines, she said.
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