Cultural contexts of caregiving: exploring Alzheimer's disease experiences and service needs among American Indian...

American Indian and Alaska Natives experience disproportionately high rates of Alzheimer's disease and related dementias, yet little research examines caregiving experiences and service needs within these communities. Guided by the Sociocultural Stress and Coping Model, this study explored dementia caregiving experiences, cultural contexts, and service needs among American Indian community members, tribal health professionals, and leaders in a Northern Plains tribal community using a community-based participatory research approach.

In 2024, 7 focus groups were conducted with 60 American Indian adults (48 community members, 12 health professionals/tribal leaders) living in the Northern Plains. Semi-structured focus groups explored caregiving experiences, cultural beliefs, and service needs. A participant background survey captured demographics and care characteristics. Qualitative data were analyzed using conceptual content analysis with iterative team-based coding.

3 themes emerged across positive, negative, and service need domains. Community members emphasized cultural duty, love/reciprocity, and humor as coping mechanisms. Negative experiences included emotional and intergenerational trauma from childhood dementia exposure, and safety/supervision challenges. Critical service needs included medical guidance, community-based education, and respite services. Health professionals and tribal leaders navigated dual clinician-caregiver identities while advocating for system-level reforms. Both groups identified geographic barriers and resource scarcity.

Findings reveal cultural strengths sustaining caregiving amid substantial systemic barriers. Effective interventions must be family-centered, community-based, and strength-focused. Healthcare systems require fundamental realignment to accommodate Indigenous epistemologies.