Dementia does not discriminate; it affects people of all cultures and backgrounds. What varies among ethno-racial communities is how dementia is viewed and understood, which may impact the way people living with dementia are supported and cared for.
Known for our diversity, Canada is home to more than 450 ethnic or cultural origins. Yet, this diversity has not been represented in dementia research. It is important to note that according to the 2024 Alzheimer Society of Canada Landmark Study, the risk of development, prevalence, and health outcomes of dementia vary significantly across cultures. For research to be relevant and impactful, it must include diverse perspectives, backgrounds, and experiences. Failing to do so can mean less applicable research findings, reinforcing systemic barriers, the exclusion of some groups, and harmful outcomes.
Carrie McAiney, Schlegel Research Chair in Dementia; Scientific Director, MAREP, and a dedicated group of people with lived experience, formed the Dementia and Diversity Steering Committee. The goal of the steering committee was to develop a resource to help researchers and research teams when conducting dementia research with individuals from diverse communities.
The committee set out to make a change: the result was the co-designed “Inclusive Research Guidebook” to guide research teams working with people living with dementia from diverse ethno-racial communities.
“Learning about and from members of ethno-racial communities is critical to building trust and relationships within ethno-racial communities,” said McAiney. “This ensures the research conducted is inclusive, intentional, and meaningful to the community.”
The Forward with Dementia team, led by McAiney, worked with care partners and service providers from the Chinese, Italian, and South Asian communities in Canada to learn more about how dementia is perceived and how family dynamics can influence support and care strategies, and integrated this knowledge into educational resources. More than 150 resources were developed and can be accessed by visiting forwardwithdementia.ca. Currently, resources for Indigenous communities are being developed.
Looking ahead, the team is working to ensure diverse experiences, perspectives, and backgrounds are incorporated into our understanding of dementia. This is being done in collaboration with people living with dementia from diverse ethno-racial communities, health and social care providers, and researchers. Together, they are working to understand and identify the needs of people from diverse communities to develop relevant information, tools, education, and resources.
To learn more about the RIA’s ongoing work in dementia, visit the-ria.ca/dementia.
Dive into the RIA’s 2024–2025 Impact Report to discover how we are enhancing the lives of older persons.