How Alberta families are managing, and changing, the experience of young onset dementia.

Bernie Travis was relieved when her 61-year-old husband, Clarence, was diagnosed with dementia in 2011. It was devastating news, but at last they had an answer — the couple had been seeking an explanation for Clarence’s symptoms for four years.

Clarence had been struggling with memory and focus, surrendering pieces of his life and identity one by one — his work, his volunteer commitments — without understanding why. He’d undergone a range of brain and heart/stroke-related tests that never seemed conclusive. “His purpose for living was really challenged,” Bernie says.

Dementia is called “young onset” or “early onset” when its symptoms begin in someone who is less than 65 years old. Young onset accounts for between five and eight per cent of dementia cases in Canada, which amounts to about 16,000 Canadians. The condition is more likely to be caused by hereditary diseases or disorders when it appears in younger people, but this isn’t always the case. It often comes as a surprise.

The first challenge of young onset dementia is figuring out you have it; in many cases — including Clarence’s — the diagnosis process takes years. Dementia symptoms are so idiosyncratic (and younger people tend to get rarer forms of dementia) that the condition is easily confused with other problems, from depression to brain injury.

Bernie says medical departments tend to operate separately, which makes it even more difficult to find answers.

“Brain injury was a silo at that time. Dementia was way out there — it’s an ‘old person’s’ disease. It wasn’t something anyone would look at,” she says.

Mackenzie Douglas says people thought her family was crazy for testing her 42-year-old mother, Brenda, for dementia. Mackenzie was a grade 10 student in Calgary when her mother, the vice president of a large company, forgot how to cook. The family teased Brenda at first, but, when she lost her mastery of numbers and began to struggle at work, they became increasingly alarmed.

“Her boss actually reached out to my dad to find out if she was okay,” Mackenzie says. Many tests and MRIs later, Brenda was diagnosed with young onset dementia. “When [the tests] came back positive, no one could really believe it because she was so young,” Mackenzie says.

Seeking Assistance

Because dementia is more common in older adults, Alberta Health Services categorizes it as a seniors’ health issue, meaning the medical professionals, services, caregiving resources and education devoted to this condition are aimed at people over 65. But this cut-off age is meaningless to the diseases and disorders that cause dementia.

The care requirements of a 45-year-old person with dementia can be very different from the needs of an 80-year-old person with dementia. Those with young onset dementia are more likely than seniors to still be working, to be physically active, and to be caregivers to their children or to their own parents. These circumstances add unique challenges to managing the condition, yet resources for younger people with dementia are limited.

Mackenzie says after her mother’s diagnosis, it was a big change for her father to balance work, parenting his daughters and caregiving. She believes it would be extremely difficult for any working person to look after a spouse at home, even with home care services. “The spouse would have to completely quit their job,” she says. “It would be a full-time job on a daily basis.”

For Mackenzie, whose mother is now in long-term care, it was a difficult time. It was hard to listen to friends complain about their own mothers and almost impossible for peers to understand the changes her family was experiencing.

Calgarians Cindy and John McCaffery knew they would need help after John’s cognitive difficulties caused him to give up his banking job in 2007. They made a point of requesting resources from every doctor and practitioner they encountered. John’s neuropsychologist found him a 10-month cognitive rehabilitation program aimed at people with brain injuries (this program has been discontinued, but CBI Health Group provides some cognitive rehabilitation services). John, who was 48 at the time, worked with an interdisciplinary team including an occupational therapist, psychologist and nutritionist to maximize his brain power and organize his time. John and Cindy agree that the program was invaluable — it made them feel less isolated.

The McCafferys, whose children were 12 and 17 when John was diagnosed, were eventually assigned an Alberta Health Services case manager who assessed their situation and connected them with home care services. The case manager also assigned a social worker to Cindy to help her manage her new role as care partner.

John describes the case manager as the linchpin. “They’re the ones who can open the door to whatever services are needed,” he says.

The Travises, however, had more difficulty accessing services and resources in their area. Bernie says no one explained Clarence’s condition adequately. “We started right from zero,” Bernie says. “We were self-taught.”

Based in Edmonton, Bernie conducted internet research and contacted the Alzheimer Society of Alberta and Northwest Territories, which serves the Edmonton area. “[At the time], it was the only place you could go to get any answers,” Bernie says. She found a young onset dementia support group through the Society, which remains an important source of information exchange and emotional support for her.

Like the McCafferys, the Travises used home care services, but this ended when Clarence broke his femur and was admitted to acute care. Navigating the system to have her husband placed in long-term care, then back in acute care, was frustrating. Bernie had to advocate for Clarence to case managers, social workers and caregivers from different departments and facilities.

Taking Action

In 2011, Bernie started Early Onset Dementia Alberta, which became a foundation in 2016. The organization, based in Edmonton, supports dementia research and advocates for the needs of younger people with dementia, including home care services, long-term care and day programs. It provides a monthly financial awareness clinic for care partners and holds an annual awareness-raising conference where everyone, from physicians and care partners to patients and children, has a voice. Families learn what supports are available, share information and find out about new developments in dementia research.

“They come and listen, and after that, they start talking,” Bernie says. “If we don’t connect people, we can’t build change.”

Bernie is also one of seven members of the EODAF Dementia Smart Life Line, a hotline-style mentorship program that began informally in 2013 and has operated as an official program since 2017. Bernie provides one-on-one advice and counsel to the care partners of people with young onset dementia at any time of the day or night. “Once you find out you are not alone, it makes a world of difference,” she says.

Cindy has also been working to address gaps in the health-care system for those with young onset dementia. After being laid off from her energy sector job in 2015, she and social entrepreneur Myrla Bulman created an organization called YouQuest, a wellness community for active people with young onset dementia. Cindy was inspired by the dementia village, a care model that has existed in Holland for more than 10 years. It’s a custom residential environment — more neighbourhood than care facility — that focuses on inclusion, connectedness, safety and comfort.

This phase of YouQuest will provide recreation therapy expertise to support people in choosing their own interests and goals in a recreation centre.

“Participants don’t want to be in long-term care facilities. They want to be in the community, active,” Cindy says.

John, who was very active before his symptoms began, has become an avid disc golfer, an activity that provides exercise, focus and a supportive social circle. Cindy says it gets him outside and encourages him to set goals (he plays every day, regardless of the weather), which contributes to his quality of life. She thinks being active and engaged may even be slowing the progression of John’s dementia. It helps Cindy, too, to know that her husband is doing something he enjoys; she feels other care partners would benefit from knowing their loved ones were involved in an active, appealing routine.

Mackenzie Douglas believes programs that focused on activity — even something as simple as walking — could have helped her mother maintain her memory for longer. Mackenzie would have welcomed a program that engaged the whole family, especially during the years when her mother was living at home. “There was really nothing that we knew of that we could do to help her,” Mackenzie says. “If there were [activity-based] courses that were more available, that would have been better.”

YouQuest’s board, of which John is a member, includes a recreation therapist who is advising on the pilot design. Support for the project is building. The Trico Centre for Family Wellness has offered to host the day program as of January 2018. Local nursing, social work and sport and recreation management students from Mount Royal University are interested in doing practicums with YouQuest. In addition, Dr. Pamela Roach, a health service researcher from the University of Calgary, is an advisor to the pilot and is coordinating a research team to assist with evaluation of it. YouQuest is currently in the process of seeking charitable status.

Moving Forward

As part of a pilot project, YouQuest recently invited members of the dementia community to a Thursday morning disc golf game in the snow. A 54-year-old participant with dementia showed up.

“When he returned home, he told his wife he didn’t want to go to the care facility with the seniors anymore,” John says. “He liked being outside.”

Clarence Travis, meanwhile, is enjoying the care facility he now calls home — Villa Caritas is an Edmonton facility where staff provide enhanced dementia person-centred care. Bernie says the environment has exceeded her expectations and eased her concerns.

“Our children go to see him, and their dad is happy,” she says.

Bernie believes it’s possible to live a beautiful life with dementia, and gradual changes in the culture of care for young onset dementia patients may bring that beautiful life within reach for more families. But the path remains a challenging one — especially for younger care partners.

“We wear about 25 hats, and all the balls are in the air,” Bernie says. “You manage as best you can.” [ ]

Brenda Douglas passed away on January 9, 2018. Our condolences to her family.