‘Heartbreaking’: A Canadian family’s fight to improve Alzheimer’s research for women

In 2020, 61.8 per cent of Canadians with dementia were female. Despite the higher prevalence in women, dementia research has historically prioritized men.

It started with the occasional word loss. Sarah Widmeyer’s mother, Elaine, would forget words like “zoo” and instead call it “the place where they keep the animals.”

Then came the paranoia.

“Mom started to become very paranoid,” said Widmeyer, a Toronto-based board member of Women’s Brain Health Initiative (WBHI). “She started to close down her circle of friends because she didn’t trust them. She had about 20 Burt’s Bees lip balms lying around the house and was positive that people were coming in and stealing them on a nightly basis. ”

At the age of 78, Elaine’s family realized they were witnessing the first signs of Alzheimer’s, a disease that, according to the Alzheimer Society of Canada, disproportionately affects more women than men.

In 2020, 61.8 per cent of people living with dementia in Canada were female, and this number is expected to rise, according to the organization. Despite the higher prevalence of the disease in women, experts note dementia research has predominantly focused on men.

“There was always a difficulty in recruiting a female in clinical trials. And so you had a huge misrepresentation with a lot of men and very few women,” explained Viviane Poupon, a neuroscientist and CEO of Brain Canada.

“It is important to have more representation of women because men are different in the mechanisms of biology. They’re different in the way the symptoms arise, but also different in the way you need to treat the same disease with men and women,” she added.

Widmeyer believes that because Alzheimer’s research and clinical trials have typically been geared toward men, this may be one of the reasons why it took so long for her mother to get a diagnosis.