Dementia incidence in Indigenous communities is projected to rise by 273% by 2050, according to a recent Alzheimer Society of Canada report. The need for accessible, culturally sensitive dementia education and support for caregivers in Indigenous communities has never been greater. McGill’s Dementia Education Program (DEP) has been helping meet that need in Eeyou Istchee (Cree) communities in Quebec with its caregiver training workshops.
The partnership began in 2023, when Sarah Quint from the Cree Board of Health and Social Services of James Bay (CBHSSJB)’s Department of Program Development and Support reached out to DEP seeking dementia training for caregivers and staff. What began with sessions at McGill’s Steinberg Centre for Simulation and Interactive Learning in Montreal, has since led to in-person workshops in Chisasibi, Wemindji, Oujé-Bougoumou, Mistissini, and other communities served by the CBHSSJB, which is part of the RUISSS McGill network, to allow more people to take part.
Led by program founder and ambassador Claire Webster, the DEP aims to build awareness, reduce stigma, and strengthen networks of care by meeting people where they are, geographically and emotionally. She has been offering workshops at McGill since 2017 but has been involved in educating caregivers since 2011, initially as part of her own journey as a caregiver to her mother and later as an advocate for caregivers and patients.
Webster’s sessions begin with her personal story and Quint says her openness helped create a space for meaningful connection in Eeyou Istchee. “Caregivers and staff appreciated how Claire shared her lived experience as a caregiver for someone with dementia,” Quint says. “She did not shy away from difficult topics. Her stories reveal the similarities lived by caregivers across cultures and into the more remote regions of the province.”
Webster notes that conversations in Indigenous communities often bring up intergenerational challenges, including the impacts of residential schools, loss, and isolation. “I’ve been asked quite a few times if being a residential school survivor increases the risk for dementia,” she says. “Those questions show how important it is to create a safe space for discussion and to recognize that dementia education must consider people’s lived experiences.”
While every community’s circumstances differ, Webster says the emotional reality of caregiving is universal. “The feelings are the same,” she reflects. “What’s different is the support people have around them.” She has adapted her workshops in Eeyou Istchee to incorporate dementia risk factors specific to Indigenous communities as well as including Alzheimer’s awareness posters developed by the CBHSSJB, with artwork by Chisasibi artist Darwin Sam, in her presentation.
A cornerstone of the DEP is Dementia, Your Companion Guide, a free resource offering practical information on understanding dementia, navigating care systems, and supporting loved ones. Webster emphasizes that the program is meant for everyone involved in care: nurses, frontline workers, and community health professionals as well as family caregivers. “The workshops are for everyone,” she says. “They’re conversations, not lectures. People bring their own examples, about caregiving, trauma, or what’s happening in their families. That’s what makes each session unique.”
In Mistissini, recalls Webster, a participant returned with several family members for a second workshop. “She told me, ‘This time, I understand the importance of making sure that everybody in the family is educated.’”
A key focus of her workshops is the 14 modifiable risk factors for dementia: less education, head injury, physical inactivity, smoking, excessive alcohol consumption, hypertension, obesity, diabetes, hearing loss, depression, infrequent social contact, air pollution, vision loss and cholesterol. Addressing these “might prevent or delay nearly half of dementia cases,” notes the 2024 report of the Lancet standing commission on dementia.For Indigenous communities, where colonialism, trauma and systemic barriers have heightened these risks, that knowledge is especially urgent.
Looking ahead, Webster’s team plans to expand outreach to more Indigenous communities, build local support networks, and grow the program’s virtual offerings.
The DEP’s initiative recently expanded to Algonquin communities in Quebec, many receiving dementia education for the first time. “They invited everybody: nurses, secretaries, the whole community,” says Webster of one recent workshop. “Around 40 people attended. You could have heard a pin drop. I always see them nodding along and say things like, ‘This is what’s happening to me.’”
Learn more about McGill’s Dementia Education Program and access the free Dementia, Your Companion Guide and other resources.
This article is part of our series, McGill in Quebec: Together for better health, which celebrates the contributions of Faculty of Medicine and Health Sciences members across Quebec. From Montérégie and Outaouais to Eeyou Istchee and Nunavik, our students, trainees, clinicians and researchers are proud and privileged to partner with local communities to learn and teach, to care for Quebecers and to improve health outcomes for all. Discover their compelling stories.
