DEMENTIA CARE IS RELATIONAL AND COMMUNAL: - LESSONS FROM INDIGENOUS COMMUNITIES IN CANADA AND THE US - Vol. 9 - No. S2 - 51

Sep 28, 2026

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The paper reports findings from the Indigenous Cultural Understandings of Alzheimer’s Disease and Dementia (ICARE) Project, drawing on qualitative data from four Indigenous communities in Canada and the US. Interviews with dementia program and health care administrators (n=20) and sequential focus groups with local staff and formal caregivers (18 sessions, n=17) between 2018–2021 inform three cultural care responses. The work emphasizes relational, communal care; community support structures; and strength-based strategies to counter colonial erasure of Indigenous practices. Feedback across sites refines an Indigenous dementia care framework for broader use.

LanguageEnglish

CategoryHealthcare

FormatPDF

Pages1

Reading Time3 min

AccessFree to download

Study overview

Data sources and participants

Key findings: cultural care responses

Relationality through ongoing relationship-building

Community support and strength-based strategies

Indigenous dementia care framework

Validation and feedback across sites

Innovation in Aging, 2025, Vol. 9, No. S2 51 community support systems, prioritizing training opportunities and decentralizing responsibilities and rights to care away from Western institutions. Finally, care models that support and center the family; coordinating with family members across institutions and specialists were a key concern. These findings have been translated into an Indigenous dementia care framework that highlights these three domains and prioritizes strength-based strategies that communities use to mitigate the colonial erasure of Indigenous practices and worldviews. Working with community partners, we have received further feedback on the framework, identifying differences in community uses for the framework and issues that apply more broadly across the four sites for future work. Abstract citation ID: igaf122.168 DEMENTIA CARE IS RELATIONAL AND COMMUNAL: LESSONS FROM INDIGENOUS COMMUNITIES IN CANADA AND THE US Dana Ketcher1, Elizabeth Weigler1, Margaret Noun1, Melissa Blind1, Nickolas Lambrou2, Megan Zuelsdorff3, Carey Gleason2, and Kristen Jacklin1, 1. University of Minnesota Medical School, Duluth Campus, Duluth, Minnesota, United States, 2. University of Wisconsin–Madison, Madison, Wisconsin, United States, 3. University of Wisconsin Madison, Madison, Wisconsin, United States This paper presents findings from the Indigenous Cultural Understandings of Alzheimer’s Disease and Dementia (ICARE) Project. We share our analysis of qualitative data generated in partnership with four Indigenous communities in Canada and the US. We interviewed dementia program and health care administrators (n = 20) and held sequential focus groups with local health care staff/formal caregivers who work with Indigenous older adults (18 sessions, n = 17) between 2018-2021 . Topics focused on the community experience of dementia across the disease trajectory. Four qualitative analysts coded and analyzed data in partnership with PIs, community-based researchers, and senior researchers. The analysis resulted in identifying three key cultural responses communities employ to care for people living with dementia across the disease continuum. First, a relationality perspective that underscores the importance of ongoing care needs rooted in relationship-building through cultural practices such as visiting. Second, community care activates

FAQs

What sources of data were used in the ICARE project study?

The study used qualitative data from four Indigenous communities in Canada and the US, including interviews with dementia program and health care administrators (n=20) and sequential focus groups with local health care staff/formal caregivers (18 sessions, n=17).

What are the three key cultural responses identified for dementia care?

The analysis identified three domains of cultural responses. It highlights relationality through ongoing relationship-building practices, community care support structures, and care models that center and coordinate with family across institutions and specialists.

How does the study translate findings into a dementia care framework?

Findings were synthesized into an Indigenous dementia care framework organized around the three domains and prioritizing strength-based strategies used by communities to mitigate colonial erasure of Indigenous practices and worldviews, with additional partner feedback informing refinements.

Sep 28, 2026

Uploaded by Cipher