“You don’t look like you have dementia.”
On the couch of his Orléans home between his wife of 15 years, Robin Meyers, and Bernese mountain dog, Brooklyn, Keith Barrett is the picture of a life well lived.
At 59, he works full time at the company he co-founded more than 20 years ago to support people with disabilities, delights in a growing blended family of six sons and five grandchildren and is looking forward to some Florida sunshine.
But he’s also a new voice of an Alzheimer Society of Canada campaign relaunched on Monday to fight old attitudes about what the more than half a million Canadians with dementia look like.
He’s frank that he once believed what people now thoughtlessly say to him.
“I don’t want people to experience what I experienced,” said Barrett, who was diagnosed two years ago with rare young onset dementia, Alzheimer’s type, which is still in its early stages.
“I was part of the stigma.”
The disease’s name conjured up in his mind the image of an octogenarian, confined to a nursing home bed or a locked ward so they wouldn’t wander.
“That’s the picture that came to my mind and that’s wrong,” Barrett said. “Through my own experiences, you can be diagnosed in your 30s, 40s, 50s. I think the more people that can share their story, the more we can have conversations and the more that our society will be accepting.”
Barrett, who fiercely defends his independence with cutting-edge technology, rigorous routine and the support of his wife — “my rock” — chokes up as he recalls when that acceptance has been painfully missing.
“One person I spoke with, the first words out of their mouth: ‘You’re still driving?’” Barrett said.
“Take your time,” said Meyers, 47, putting a hand on his.
“Keith makes really good decisions around where he drives and when he drives,” she added. “But I have people say to me, ‘You still let him drive?’ What do you mean, let him? He’s capable of making his own decisions. It’s really a lack of understanding that people have that someone is very capable of contributing to their communities, to their lives, and to live.
“That’s what we want people to understand. The moment you get diagnosed doesn’t mean you’re the person who needs a lot of care. The moment you get diagnosed is the moment you say, ‘I’m going to work really hard to keep everything that I have, all my skills, my abilities, for as long as I can.’”
The campaign — “Yes. I live with dementia. Let me help you understand.” — aims to change attitudes the Alzheimer’s Society uncovered with recent research that showed that one in four Canadians said they’d feel ashamed or embarrassed if they had dementia. One in five admitted using derogatory or stigmatizing language about dementia.
That leads to real harm to patients and their families, said Alzheimer Society of Canada chief executive Pauline Tardif, who points to everything from jokes that forgetfulness must be dementia to the assumption that a diagnosis means the end of a meaningful life.
It might make people afraid to seek a reason for their own or a loved one’s symptoms like memory loss, changes in judgment and reasoning or mood and behaviour and difficulty performing familiar tasks or expressing themselves. So they don’t get the support they need and treatment. While Alzheimer’s disease is eventually fatal, some forms of dementia can be cured.
Once diagnosed, people with dementia may face impatience when it takes them a beat longer to order a coffee or remember their PIN — Barrett was yelled at during an airport security check — leading them to shy away from tasks they can still perform and activities they enjoy.
Or stigma — “Why visit when she might not remember my kids’ names or even recognize me?” — can keep friends away, leaving people with dementia socially isolated, which is itself an important contributor to cognitive decline.
People with dementia sit on the society’s board of directors and have important roles in educating policy-makers, as Barrett did when he and Meyers attended a conference hosted by the federal health minister last spring to guide work on a new national dementia strategy.
“People in our communities need to be better educated and more patient and understanding to enable them to live their full lives and not disable them prematurely,” Tardif said.
The campaign is also needed to reveal the often-invisible scale of a “crisis” in health care, said Tardif, who co-chairs the health minister’s advisory board on dementia after the federal government committed to developing the strategy the society had long advocated.
While 564,000 Canadians live with some form of dementia, that number is expected to rise to 937,000 by 2031.
That’s mostly because our society is aging and we’re living longer. While dementia isn’t a normal part of growing old, age is the No. 1 risk factor for developing dementia. The risk doubles every five years after age 65.
“The prevalence of dementia is growing exponentially and our care partners across Canada are ill-resourced and that is causing a lot of issues in the care of people living with dementia,” she said. “The Alzheimer Society is only one of those players.
“We try to do our bests with our donors’ support but we don’t provide health care, so in working with our provincial partners and hopefully now with the federal government with the national dementia strategy that is being created we can increase the care and support available to people living with dementia.”
Barrett’s symptoms first appeared about four-and-a-half years ago. After decades of speaking effortlessly off-the-cuff for work, he started forgetting what he’d already said. He was misplacing things and using the wrong word, say “fridge” instead of “stove.”
Meyers recalls that Barrett would be angry that people had told him that they had had a conversation with him that he couldn’t remember but he was reluctant to bring it up with doctors and they dismissed the changes as stress or aging.
“I knew him really well,” Meyers said. “I could see the changes more than anyone else could. I couldn’t continue to watch him be as frustrated as he was.”
Meyers kept bringing it up. Finally, Barrett was referred to a neuropsychologist who performed cognitive tests as doctors did other blood work and an MRI to exclude other causes of memory loss.
In December of 2016, he was diagnosed.
The couple started attending Alzheimer Society education sessions and sharing the news with their family but Barrett admits that it didn’t seem real.
“I still didn’t believe it,” Barrett said. “I’m 57 at that point. It couldn’t be right.”
The message he heard was to “go home and get your affairs in order, get your will in order. There was no positive encouragement that you can live with this.”
Meyers, too, was left with the impression that Barrett was being advised to wind down his life and retire.
“I think we need to do the exact opposite,” thought Meyers, a director in a health care organization who works with seniors, many of them with dementia. “Let’s be positive. Let’s live the best life we can.”
Two years after that diagnosis, Barrett is still heading to the office every day with the help of a colleague who supervises some of his work.
He says the key to living well with dementia is constant learning: he’s systematized his routines, starting with morning grooming and relies on technology, including an iWatch, the virtual assistant Alexa at home and GPS when driving.
He takes notes, asks colleagues to follow up work conversations with a short email summarizing what was discussed and Meyers, instead of telling her husband of their plans for Thursday night, for example, sends him a digital invite so it will be on his calendar.
“As articulate as Keith is when he’s talking to you, it’s really important to understand that he’s just affected in a way that maybe isn’t something you can totally see every day,” Meyers said.
Barrett describes losing confidence, like in his former ability to strike up a conversation with anyone, and struggling with anxiety and impatience. The noise and distraction of big social events can be overwhelming, and walks with the dog have largely replaced the movies they used to enjoy.
“Why pay for something you forget the next day?” Barrett quips, but he’s sombre as he says that he tries not to think of his grandchildren and how he will be as they grow.
He’s become a passionate advocate for more services for the estimated 16,000 Canadians under 65 with young onset dementia and for research to find definitive tests for Alzheimer’s disease and effective treatment in the future.
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