Supporting Canadian Caregivers
Why Family Caregivers Are Holding the System Together Q&A
From long-term care to hospitals and home settings, unpaid family caregivers are filling critical gaps in Canada’s healthcare system — often at the cost of their own wellbeing.
You’ve researched unpaid family caregiving for well over a decade. How much does Canada’s healthcare system rely on family caregivers?
More than most people realize, and more than the system has ever properly acknowledged. Family caregivers are essentially the invisible
workforce propping up healthcare, especially in long-term care.
This became undeniable during the pandemic. When families were locked out of care homes, we saw just how much they were doing day-today. Without them, the system didn’t just struggle, it collapsed in many cases. Residents deteriorated rapidly.
FAMILY CAREGIVERS:
Many stopped eating, lost mobility, or experienced cognitive decline. Families aren’t just visitors. They are providing essential, ongoing care that the system simply doesn’t have the capacity to deliver on its own.
The Unseen Strength Behind Care in Canada
New research sheds light on the hidden realities and sacrifices of family caregiving and the growing need for support.
Across Canada, caregiving is quietly woven into everyday life. Millions of people provide unpaid assistance to aging or unwell parents, partners, children, or friends. Research from the Petro-Canada CareMakers Foundation and Leger reveals that many caregivers struggle to recognize their own role. Forty-seven per cent say they don’t identify as caregivers or think others would view them that way, either. At the same time, half of the Canadians providing 15+ hours weekly of unpaid care feel that their work is invisible.
There is a gap between public perception and the lived experiences of caregivers that masks the actual social, emotional, and professional sacrifices they make. The demands of unpaid care are noteworthy — 73 per cent have missed social occasions, while 57 per cent have left work early to help someone they love.
Plus, 85 per cent of family caregivers underestimated the role’s emotional toll, contributing to stress, exhaustion, and caregiver burnout over time.
Increasing visibility for the vital role caregivers play
Recognizing the growing challenge, the Petro-Canada CareMakers Foundation, supported in part by Suncor, the proud owner of Petro-Canada, works to highlight caregiver experiences across the country. Through research, grants and funding initiatives, as well as fundraising and partnerships with community organizations, the foundation helps expand caregiver recognition and assistance.
CareMakers helps charities across Canada provide critical resources and programs for family caregivers, including respite
opportunities, peer support groups, and support to navigate complex responsibilities. By investing in caregiver support programs, the foundation continues to encourage national conversations about caregiving and Canadians balancing work, family and care.
Support starts with acknowledging the realities of family caregiving. Take a moment to notice the quiet acts of care made by neighbours, coworkers, or friends. Together, they form a vast network of family caregivers across Canada. Their commitment, often unseen and unrecognized, plays a vital role in the health and well-being of our communities.
WRITTEN
BY
Katherine Cappellacci
Between August 1–18, 2025, Leger surveyed 2,000 Canadians (18+) via its 400,000-member online panel. "Caregivers" are defined as those performing unpaid
How the RIA is Building More Inclusive Dementia Care Across Cultures
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 at the RIA and Associate Professor in the School of Public Health and Health Systems at the University of Wat-
erloo. “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.’”
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.
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.”
WRITTEN BY Jasmin Gow
For more resources that help older adults and their care partners live their best lives, visit the-ria.ca
This article was sponsored by the Schlegel-UW Research Institute for Aging
Carrie McAiney Schlegel Research Chair in Dementia, RIA & Associate Professor in the School of Public Health and Health Systems, University of Waterloo