Keeping active helps people with young-onset dementia, and their loved ones, says YouQuest co-founder

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After her husband John was diagnosed with young-onset dementia at age 48, Cindy McCaffery struggled to find ways to bring meaningful activity to his days, and give her peace of mind while she worked.

"I would be at the office and John would be home alone in the basement," said McCaffery, who lives in Calgary.

"And I'd worry about: Is he going to wander? Is he going to burn down the house? What am I going to do?" she told The Current's Matt Galloway.

When McCaffery realized that other families were in the same dilemma, she co-founded YouQuest, which offers recreational programs for people diagnosed with the disease at an early age. 

According to the Alzheimer Society of Canada, roughly 16,000 people in Canada have young-onset dementia — an estimated eight per cent of all dementia diagnoses nationwide. A case is considered young-onset if diagnosed before the age of 65, though it affects some people as young as in their 30s.

McCaffery doesn't know of many other groups in Canada like YouQuest, offering full-day services to those under 65.  

The majority of other support programs are aimed at seniors in their 80s or 90s, with very little physical activity, she said.

"John was not interested in that. He had been a very active person all his life: a skier, biker, scout leader, soccer coach," she said.

John was diagnosed with frontotemporal dementia in 2007, affecting some decision-making abilities and executive function. While not able to continue working, he has remained independent. 

McCaffery said that people with a young diagnosis "like being in the community — they don't want to be in a church basement."

YouQuest offers fitness, culinary classes

Before the pandemic hit, YouQuest engaged up to 12 members in recreational activities one day a week, at the Southern Alberta Institute of Technology (SAIT).

"We had access to the gym, court sports, fitness area, meditation and yoga — and of course, they have a wonderful culinary program," McCaffery said.

The group would also organize outings in the community to keep people engaged and stimulated, she said.

With pandemic restrictions at SAIT, YouQuest has moved to the Calgary Jewish Community Centre. The group can now only take eight members a day to ensure physical distancing, but has been able to add a second day of services per week.

YouQuest is now fundraising and hiring an executive director to expand its operations, McCaffery said.

"We're going to be on the mark when COVID allows us to just spring forward, because there's a lot of people that need some support."

Burden of care falls on family

McCaffery has seen the impact of a dementia diagnosis on her own in-laws.

Her father-in-law died 10 years after he was diagnosed with Alzheimer's, but the stress of those years and the lack of services greatly affected her mother-in-law, who died at 58.

"Now I'm 58 and I don't want that to happen to me or any of the people in our young-onset dementia community," she said. 

Jessica Bertuzzi, who works for the Alzheimer Society of Canada, says that a diagnosis of dementia in younger people often means the burden of care falls to family members. 

"I would say about 80 per cent of persons with young-onset dementia are being cared for by a loved one," said Bertuzzi, who is the public relations and education manager for the Sudbury-Manitoulin North Bay branch.

She said that as the disease progresses, it can become a "24-hours-a-day responsibility," which in turn has an impact on care partners.

"Without the proper support and education to help you along this journey, partners can end up in hospital themselves," she told The Current last week. 

"And then who's going to end up caring for their loved one, living with dementia?"

McCaffery said participants in YouQuest activities report "a lot less stress all around."

"Our caregivers tell us that their loved ones sleep better, they eat better, they're calmer, they're happier because they got to be outside in the sunshine and fresh air with friends," she said.

"All of those things make the care partner happier and calmer — and they're at the office, like I am, knowing that their partner is in a safe space where they're loved and looked after."

Written by Padraig Moran. Produced by Cameron Perrier.