June is Seniors Month, an opportunity to recognize the experiences and contributions of older adults across Canada. It is also a reminder that aging is not the same for everyone. Culture, language, family roles, and community all shape how people understand aging, care, and, in particular, dementia.
Canada is home to more than 450 ethnic or cultural origins, according to Statistics Canada. Reflecting this diversity in dementia research and care is essential. 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 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 at the RIA and 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.”
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 with people living with dementia and their care partners from diverse ethnic and cultural communities, we can learn from them 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.’”
Helen 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.
Rather than simply translating information, the materials are culturally adapted before being translated into various languages.
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.”
This Seniors Month, the RIA is highlighting the importance of inclusive, culturally relevant support for older adults and the people who care for them. By listening to diverse communities and working alongside people with lived experience, we can help create dementia care that is more respectful, meaningful, and accessible.
For more resources that help older adults and their care partners live their best lives, visit the-ria.ca.