Dementia affects hundreds of thousands of Canadians, but it’s still a stigmatized and underfunded condition, especially for Black, Indigenous, and people of colour (BIPOC) communities. A new initiative from the Alzheimer Society of Canada will help fill important gaps in research.
Contrary to popular belief, dementia isn’t a normal part of aging — though we still don’t know exactly what causes it. Research is actively underway across Canada to find better treatments, improve quality of life for people living with dementia and their caregivers, and pave the road towards a cure. However, not all people with dementia are well-represented in research studies. Funding and facilitating effective, equitable research that encompasses the diversity of lived experiences across Canada is crucial to improve quality of life for affected Canadians. More than 500,000 Canadians live with dementia — a number projected to double in less than 10 years.
The Alzheimer Society of Canada is a nationwide charity that provides support services to people with dementia and their caregivers, funds and facilitates research, and works to enhance public knowledge about Alzheimer’s disease and other dementias.
It’s latest effort — the Dementia Journey Survey — aims to gather information and understanding about the experiences of BIPOC community members living with dementia. “BIPOC people aren’t well-represented in dementia research,” says Ngozi Iroanyah, Community Engagement Coordinator at the Alzheimer Society of Canada. “There’s a serious gap of information around these populations, and that means that policies, programs, and strategies don’t speak to their needs and experiences. Because of that, people may feel even more left out and excluded, and not seek out treatment in time. People in these communities fall through the cracks — or rather, gaping holes — in the research.”
Stigma can prevent access to appropriate treatment and support
While there have been significant strides in its diagnosis and treatment, dementia is still a highly-stigmatized and often misunderstood disease. About 60 percent of Canadian family physicians say that they feel ill-equipped to help their patients navigate dementia, and there’s currently no standardized treatment protocol once a diagnosis is made. Compounding the problem is the inequitable distribution of research across different ethnic groups, which serves to further marginalize individuals living with dementia and their caregivers, through a lack of culturally-specific dementia tools.
The Dementia Journey Survey focuses on the experiences of dementia within BIPOC communities
Stigma and embarrassment can also prevent those living with dementia, especially BIPOC individuals, from sharing their experiences with researchers. As a result, those researchers, as well as physicians and policy writers, are ill-equipped to support those living with dementia in an equitable way. From underpinning research about causes and treatments to designing effective treatment protocols, more data is needed.
To close the equity gap in dementia treatment and support, the Alzheimer Society, in collaboration with the College of Family Physicians of Canada, has launched the Dementia Journey Survey. The 10-minute survey is open to all people living with dementia and their caregivers but is especially aimed at BIPOC communities. “We’re trying to move toward deeper community engagement whereby we have the experiences, voices, and perspectives of underrepresented communities informing the things we do,” says Iroanyah. The survey is accessible online through the Alzheimer Society website, alzheimer.ca/survey.
Hundreds of unique programs are available across the country through the Alzheimer Society. From referral services and caregiver support to brain health programs and COVID-19 resources, there’s a good chance a program near you can help.