Informal dementia caregiving among Indigenous Communities in Ontario, Canada

Kristen Jacklin, Jessica E. Pace, Wayne Warry

Research output: Contribution to journalArticlepeer-review

25 Scopus citations


Recent studies suggest dementia is an emerging health issue for Indigenous peoples in Canada. In this article, we explore findings concerning informal dementia caregiving in Indigenous communities. Our research has been carried out in partnership with Indigenous communities in Ontario, Canada, over the past 4 years. Semistructured in-depth interviews were carried out with informal Indigenous caregivers (primarily family) to Indigenous people with dementia at 7 geographically and culturally diverse research sites (n = 34). We use a critical interpretive and postcolonial lens to explore common caregiving experiences and patterns to gain insight into Indigenous models of care and better understand how to appropriately support Indigenous families dealing with a dementia diagnosis. Themes from the interview data are explored through a storyline beginning with why and how participants came to the caregiving role; the challenges, struggles, and decisions along the way; and reflections on the rewards and benefits of caring for a loved one with dementia. The findings suggest that underlying Indigenous values created a consistent family caregiving model across the Indigenous cultures and geographic contexts included in the study. Family caregiving was found to facilitate cultural continuity through intergenerational contact and the transmission of cultural knowledge. Diverse community contexts presented significant challenges most immediately attributable to the nature of relations between Indigenous and non-Indigenous Canadians and the continued colonial policies governing access to services.

Original languageEnglish (US)
Pages (from-to)106-120
Number of pages15
JournalCare Management Journals
Issue number2
StatePublished - 2015

Bibliographical note

Publisher Copyright:
© Springer Publishing Company.


  • Colonialism
  • Cultural safety
  • Dementia
  • Family caregiving
  • Indigenous health


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