Robin Meyers’ husband had been having troubles with his memory. His friends kept reminding him of conversations they said they had, but that he couldn’t remember. It was frustrating for him — his personality had changed a little too, she said.
It took years of testing, but Keith Barrett was eventually diagnosed with young onset dementia, and probable Alzheimer’s, at the unusually young age of 57.
“Were we both pretty devastated with the diagnosis? Absolutely,” Meyers said.
Barrett, who runs a social services agency in Ottawa with a business partner, didn’t want to stop working, though.
“We sort of had to say, no, we’re going to work really hard to live the best life we can in the best way we can,” Meyers said.
“Even though this is not something we want or chose, these are the cards we’re dealt, so we’re going to try to play them in the best way we can.”
He definitely didn’t want to stop driving. “He’d proudly tell you he’s probably a better driver than I am,” Meyers said. “I don’t want to tell you, but he probably is right.”
While he does have bad days — he wasn’t able to speak with Global this week — more than two years after his diagnosis, Barrett is still able to help manage his business, live at home, and carry on a conversation. He even helped found an organization called Dementia Advocacy Canada, to try to build awareness of the disease.
Many people are afraid of dementia, Meyers said. “I think people are thinking about a person who’s been in a long term care facility and in a wheelchair and incapable of participating in their life.”
“There can be a long time before any of those things happen,” she said.
There will soon be many more Canadians like Barrett. According to the Alzheimer’s Society of Canada, there were 564,000 Canadians living with dementia in 2016. By 2031, there will be 937,000.
September marks World Alzheimer’s Month.
WATCH: Living with dementia and Alzheimer’s disease
Dementia is the name for a broad set of symptoms affecting the brain, which might include memory loss, difficulties with thinking or problem-solving, and mood changes.
Alzheimer’s disease, the most common form of dementia, is still poorly understood in many ways. Researchers haven’t developed a definitive cause, though they know its signs, and there is no effective cure or treatment for the disease.
But there are many promising avenues of research, according to Saskia Sivananthan, chief of research with the Alzheimer’s Society of Canada.
What causes Alzheimer’s?
Alzheimer’s is characterized by the buildup of amyloid beta protein plaques, and tau protein tangles in the brain, Sivananthan said.
What causes those buildups — and how to prevent them — is less well understood. Many things might contribute to a person’s risk of developing the disease.
Age is the most common risk factor, though dementia isn’t a normal part of aging, she said.
According to some recent research, your lifestyle might play a role.
Guidelines issued in May 2019 by the World Health Organization recommend regular physical activity, a healthy diet, stopping smoking and drinking less alcohol as ways for healthy adults to reduce their risk of cognitive decline.
A systematic review published in the International Journal of Neuroscience in 2017 found that healthy dietary patterns, like the Mediterranean diet with its emphasis on vegetables and whole grains with very little red meat, are associated with reduced development of Alzheimer’s, though it said more research is needed.
Recent Canadian research is finding that reducing your red meat intake, eating less pre-packaged food and eating more grains, fish and vegetables can help improve healthy people’s cognition, Sivananthan said.
Your genes may also make a difference. While only about two to five per cent of Alzheimer’s cases are caused by a genetic factor, she said, some gene variants might put people at a higher risk of developing dementia.
Living with dementia
Another big area of research is on living with Alzheimer’s or dementia, Sivananthan said, as in, what to do after you’re diagnosed.
“When you’ve met one person with dementia, you’ve really just met one person with dementia,” she said.
“Everyone’s story is so different and the research has been focusing more on quality of life and how do we support better quality of life.”
For Meyers and her family, the initial advice was disappointing. “They often tell you, ‘Go home, plan for your life,’ that kind of thing.”
“Living with dementia has really sort of changed. And a lot of that has been from people living with dementia pushing back and saying, ‘Wait a minute. You know, we don’t have to be prescribed to stop and disengage from our lives. We actually can be prescribed to live.’”
Barrett has worked out a schedule with his workplace where he comes in earlier, when he’s normally feeling better, she said. Another manager checks some of his work to make sure things aren’t missed, and he takes more notes than he used to.
Technology is also a big help, Meyers said. Barrett asks his Amazon Alexa device questions, responds to messages on his smartwatch and sets lots of reminders in his electronic calendar.
WATCH: Ottawa launches $50M national dementia strategy
Several projects are examining how to live better with dementia, and maybe slow cognitive decline, Sivananthan said, including a UBC study on whether joining a choir helps people with dementia maintain their cognition.
The idea is that learning this new skill could help build resilience and create new connections in the brain, she said. The social aspect makes a difference too. “We know that when you live in isolation or when you’re socially isolated, that can have an effect.”
The federal government’s National Dementia Strategy puts prevention, treatment and quality of life as its priorities.
One of the biggest setbacks recently in the field of Alzheimer’s and dementia research is in the search for a cure or effective treatment for the disease.
In March, Biogen ended clinical trials on a drug, Aducanumab, that had shown early promise. This was especially hard for the Alzheimer’s community, Sivananthan said, as the drug had made it to a Stage 3 clinical trial, which is fairly advanced in the drug development process.
“This is a drug that was being tested and had really promising results,” she said. “So there is a lot of disappointment here at that.”
After these drug failures, she said, the Alzheimer’s Society is shifting some of its research competitions to new avenues of inquiry that don’t focus so closely on the amyloid beta and tau proteins.
“We’re really looking to fund and to spark new and innovative ideas outside of those existing hypotheses because there’s really a recognition in the community that we need to start pushing these boundaries in dementia research and not just stay along the same mechanisms.”
Meyers would like to stay focused on the present.
“Research really hasn’t gotten us where we need to go right now,” she said.
“I think the thing I think about the most is just to talk about communities being dementia-friendly, or, to just be kind. Just be kind to another person.”
“Be much more cognizant of the fact that actually more people are living with this than we know and more people will be living with this in the future. So communities, businesses and health care need to be responsive to that.”
— If you would like more information on Alzheimer’s or dementia, including local support programs, visit alzheimer.ca