Relational, Community Dementia Care for All: Observations and Lessons from On‐Reservation Providers, Administrators, and Formal Caregivers in the US and Canada

Abstract Background Research with Indigenous populations in North America has consistently demonstrated divergent views on caregiving for people living with dementia (PLWD) compared to Western biomedical approaches. Few studies to date have applied strengths‐based approaches and, as a result, an Indigenous caregiving framework appropriate for on‐reserve/reservation populations has yet to be created. In this paper we share research findings that can be used to initiate strategies for culturally appropriate, sustainable, and supported care strategies for Indigenous PLWD. Method We used a community‐based participatory approach to conduct ethnographic research in a culturally safe way among four Indigenous communities in the US and Canada. Community‐based researchers conducted key informant interviews with dementia administrators and providers (n = 35), and sequential focus groups with local health care staff/formal caregivers that work with Indigenous older adults (14 sessions, n = 17). Data were coded in QSR NVivo and analyzed using a phenomenological framework. Result Participants described numerous assets available to Indigenous communities that can help PLWD age in place, based in a wholistic orientation. Main qualitative themes emerging from the analysis include: the need for wholistic models of care; the value and importance of family caregiving; the role of social/community support; the value of caring for the PLWD in the home for as long as possible; and the need for community services to support caregivers. Indigenous values, past experiences with health systems/colonization, and lived experiences of dementia were important underlying factors informing an Indigenous caregiving framework appropriate for on‐reserve/reservation populations. Conclusion Western models of caregiving for PLWD, especially the eventual placement of PLWD in care facilities, do not fit with Indigenous value systems and teachings. Relational, family, and community‐based care is a culturally appropriate form of care for most elders in Indigenous communities. This model will be most effective when culturally appropriate community support services such as personal support and home care nursing services, as well as adequate respite, are included. Further research with family caregivers and PLWD will be necessary to further our understanding of this Indigenous care model and together with this study will form the basis for a community‐based caregiving intervention.