Since Rubina Qureshi’s Alzheimer’s diagnosis, her husband Pasha Qureshi has become her caregiver. They are seen making lunch in their Milton home on Jan. 11.Jennifer Roberts/The Globe and Mail
One-quarter of people living in Canada with dementia will be South and East Asian by 2050, up from just 8 per cent today, according to a new report that says the health system and community organizations should be prepared for a major shift in the demographics of Alzheimer’s and related diseases.
In a study released Monday, the Alzheimer Society of Canada predicts there will be more than 1.7 million people in Canada living with dementia in 2050, nearly three times the estimated 650,000 today. One in four will be Asian, a broad category that includes people with roots in China, Vietnam, Korea, India, Pakistan, Sri Lanka and other countries.
“I think we are at a very pivotal moment,” said Roger Wong, a clinical professor in geriatric medicine at the University of British Columbia. “I do believe we have the opportunity to do something now to make the right choices and take the right types of actions in order to collectively improve dementia care in Canada.”
The findings released Monday are the second of a three-volume landmark study the society prepared in co-operation with the Canadian Centre for Economic Analysis (CANCEA), a Toronto-based company that uses big data to project socio-economic trends. Because there are no reliable national data on dementia, the Alzheimer Society and CANCEA drew on 2016 census figures to create a computer simulation model that projects how the demographics of dementia in Canada will change in the coming decades.
Dementia is an umbrella term for more than 50 brain diseases and conditions, the most common of which is Alzheimer’s.
The study forecasts rising numbers of people with dementia in all census groups between 2020 and 2050, including a 507-per-cent increase among those of African origin; a 434-per-cent increase among people with Latin American roots; a 318-per-cent increase among people with a Caribbean background; and a 273-per-cent increase among Indigenous people. But those groups, taken together, would still only make up about 7 per cent of the projected total, or approximately 116,000 patients.
Most people with dementia in Canada today – 87 per cent of the total – are those who described themselves in the census as European or Canadian. By 2050, their share is expected to drop to 68 per cent, the study says.
The biggest anticipated change is among Asians with dementia. The study predicts their numbers will reach 413,940 by 2050, up 785 per cent from an estimated 46,760 in 2020.
“We need to make sure that our systems of care are set up to reflect their needs,” said Joshua Armstrong, a research scientist with the Alzheimer Society and the report’s lead author.
Age is the biggest risk factor for Alzheimer’s and similar diseases. Canada’s population, led by the baby boomers, is getting older, which Dr. Armstrong said explains most of the anticipated rise in dementia cases over the next couple of decades.
The projected shift in the race of patients is primarily a consequence of changes in immigration patterns, but the model also accounts for the fact that some communities have higher dementia risk because poverty, low education levels and chronic conditions such as diabetes and high blood pressure can predispose people to dementia.
Navjot Gill, a University of Waterloo researcher working toward a PhD in public health, saw first-hand how little culturally appropriate information was available for her family when her grandmother was diagnosed with Alzheimer’s disease a few years ago.
Ms. Gill searched online for resources that would help explain the illness to her parents in their first language, Punjabi. All she could find was a clumsily dubbed video that featured an old white couple in what looked like the British suburbs. Ms. Gill said the video left her parents thinking, “This is a Western disease, right? It doesn’t happen in our community.”
Later, when she worked for the Alzheimer Society for a summer, Ms. Gill found herself helping to run community events that were all in English. “It made me reflect,” she said. “My grandmother can’t access any of these because she doesn’t speak the language. She doesn’t understand the culture.”
Ms. Gill, who is studying the experiences of South Asians with dementia in Canada for her PhD thesis, said the situation is improving, with more hospitals and memory clinics producing culturally appropriate materials in Punjabi, Hindi, Urdu and other languages.
Still, challenges persist. Dr. Wong said that in his practice as a gerontologist, he often meets overburdened South and East Asian families struggling with a cultural taboo against placing a parent or grandparent in a nursing home.
“There’s also a huge piece about stigma,” he said, adding that often leads to late diagnoses. “To many individuals living with dementia and their families within the Asian community, there’s a sense that this is a very private matter.”
Rubina Qureshi and her husband speak publicly about how people with Alzheimer’s can make the best of their remaining years.Jennifer Roberts/The Globe and Mail
Rubina and Pasha Qureshi, who are originally from Pakistan, are trying to change that.
Ms. Qureshi, 67, was diagnosed with Alzheimer’s disease just after her 64th birthday. Her short-term memory has faded – she uses an iPad to keep track of meals and outfits she knows she’ll forget – but her good humour has not.
She and her husband now speak publicly about how people with Alzheimer’s can make the best of their remaining years.
“You have to figure out how to deal with things,” Ms. Qureshi said. “My iPad is my second brain, whatever I need to remember, I write that right down and I don’t get frustrated.”