Dementia Caregiving through a Cultural Lens: Community and Provider Perspectives Among American Indian Adults In the Northern Plains

Background and Purpose American Indian (AI) adults face disproportionately high rates of Alzheimer's disease and related dementias (ADRD), yet culturally grounded understanding of caregiving experiences and service needs remains limited. This study explored positive and negative dimensions of dementia caregiving, cultural contexts, and service needs from the perspectives of AI community members and health professionals in a Northern Plains community.

Methods Using a community-based participatory research (CBPR) approach, seven focus groups were conducted with AI adults (N = 60), including community members (n = 48) and health professionals and community leaders (n = 12). Participants were predominantly female (77%) with a mean age of 59 years. Most resided on reservations (69%), and 59% had known someone with ADRD. Qualitative data were analyzed using conceptual content analysis, and quantitative survey data were summarized descriptively.

Results Participants were predominantly female (77%), lived primarily on reservations (69%), and 38% had served as dementia caregivers. Three major domains emerged: positive caregiving experiences, caregiving challenges, and service needs. Cultural duty was the most prominent positive theme, with families emphasizing home-based care, intergenerational responsibility, and reciprocity as moral imperatives. Humor emerged as a culturally embedded coping resource, and spirituality provided essential meaning-making support. Caregiving challenges included intergenerational trauma from childhood dementia exposure, ambiguous loss, and the exhausting demands of 24/7 supervision. Both groups identified urgent needs for culturally tailored dementia education, hands-on caregiving skills training, and respite services. Health professionals additionally navigated dual clinician-caregiver identities while advocating for system-level reforms and policy changes.

Conclusions and Implications Cultural values function simultaneously as caregiving motivation, moral framework, and coping resource in AI communities. Effective interventions must be family-centered, community-based, and strength-focused, building on Indigenous cultural assets while addressing significant resource gaps and systemic barriers. CBPR partnerships are essential for developing sustainable, culturally responsive dementia care programs.