Carrie McAiney
Schlegel Research Chair in Dementia, University of Waterloo and Schlegel-UW Research Institute for Aging, Associate Professor, School of Public Health and Health Systems, University of Waterloo
Understanding cultural perspectives in dementia care can reduce stigma, improve access, and better support families navigating the journey.
Canada is home to people from more than 450 ethnic or cultural origins, according to Statistics Canada. Reflecting this diversity in dementia research and care is essential to delivering meaningful support. At the Schlegel-UW Research Institute for Aging (RIA), this means ensuring the voices of people with diverse experiences, perspectives, and cultural backgrounds shape how we understand and support people living with dementia.
Dementia carries different, and sometimes stronger, forms of stigma across cultures. In some communities, families may feel pressure to manage dementia privately or avoid discussing it openly. This stigma can delay diagnosis, prevent families from seeking support, and leave care partners — a term used instead of “caregiver” to reflect the shared relationship and collaboration — feeling isolated as they try to navigate unfamiliar systems.
“In some cultures, memory loss may be viewed as a normal part of aging. In others, it may be interpreted as a mental illness or an act of God,” explains Carrie McAiney, Schlegel Research Chair in Dementia, University of Waterloo and Schlegel-UW Research Institute for Aging, Associate Professor, School of Public Health and Health Systems, University of Waterloo. “These perspectives can influence when people living with dementia and care partners seek help and what kinds of support they feel comfortable accessing.”
Collaborating with people with lived experience
At the RIA, McAiney and her team champion a co-design approach that brings people living with dementia and care partners into the research as partners.
“Resources created only by researchers can miss important cultural realities,” says McAiney. “By working together with people living with dementia and their care partners from diverse ethnic and cultural communities, we can learn about their experiences and co-create resources that are more culturally meaningful, respectful, and truly useful.”
For Helen Liu, a co-design partner, that perspective is deeply personal. “The word dementia was not in our vocabulary before my dad was diagnosed,” she says. “In Chinese culture, there can be stigma around the word ‘dementia.’”
Liu and other co-design partners helped shape Forward with Dementia, a collection of resources designed to help people living with dementia and care partners understand the condition, navigate diagnosis, and plan to live their best lives.
Creating culturally relevant support
Rather than simply translating information, the materials are culturally adapted before being translated into various languages.
Building on this work, the RIA developed the Inclusive Research Guidebook, which offers guidance on meaningfully involving people living with dementia and care partners from diverse communities in both research and program design. The guide helps ensure dementia research and services better reflect the experiences of diverse communities, leading to more inclusive and effective care.
Community partners are also helping guide this work. Through the Building Belonging project, organizations in Halton Region and Hamilton are collaborating to deliver inclusive programs that reflect the diverse communities they serve.
“Culturally relevant support can make a powerful difference,” says McAiney. “When resources reflect the realities of different communities, care partners and people living with dementia are better able to seek help, share experiences, and find the support they need.”
For more resources that help older adults and their care partners live their best lives, visit the-ria.ca.
