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Dementia Education Program Newsletter

Offering support to dementia caregivers in Quebec Indigenous communities

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. 鶹ýվ’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,whenSarah Quint fromtheof James Bay (CBHSSJB)’s Department of Program Development andSupportreachedout toDEPseeking dementia training for caregivers and staff.Whatbegan with sessions at 鶹ýվ’sSteinberg Centre for Simulation and Interactive Learningin Montreal,has sinceled to in-person workshops inChisasibi,Wemindji,Oujé-Bougoumou,Mistissini,andother communities served by the CBHSSJB,which ispart of theRUISSS 鶹ýվnetwork,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 beenoffering workshops at 鶹ýվ since 2017 buthasbeen involved in educating caregivers since2011,initially as part ofher ownand lateras anadvocate for caregivers and patients.

Webster’ssessions begin with her personalstoryandQuint saysheropenness helped create a space for meaningful connection in EeyouIstchee.“Caregivers and staffappreciatedhow 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 oftenbring upintergenerational 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 EeyouIstcheeto incorporate dementia risk factors specific to Indigenous communities as well as includingdeveloped by theCBHSSJB, with artwork byChisasibiartist, in her presentation.

A cornerstone of theDEPisDementia, YourCompanion Guide, a free resource offering practical information on understanding dementia, navigating care systems, and supporting loved ones.Websteremphasizes 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’reconversations, not lectures. People bring their own examples, about caregiving, trauma, orwhat’shappening in their families.That’swhat makes each session unique.”

InMistissini, recallsWebster,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 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.

TheDEP’sinitiativerecentlyexpanded toAlgonquin 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 鶹ýվ’sDementia Education Programand access the freeDementia,YourCompanion Guideand other resources.


This article is part of our series, , which celebrates the contributions of Faculty of Medicine and Health Sciences members across Quebec. From Montérégie and Outaouais to EeyouIstcheeand Nunavik, our students, trainees,cliniciansand 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. .

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