Understanding Caregivers of Native Hawaiian Kūpuna with Age-Related Memory Loss on One Hawaiian Homestead.

Abstract

Understanding the concerns and challenges of caregivers of Native Hawaiian kūpuna or elders (age 55 years and older) with age-related memory loss conditions, specifically, Alzheimer’s Disease and Related Dementia (ADRD), on one Hawaiian Homestead is the focus of this doctoral research study. ADRD is known to affect memory, thinking, and behavior. This research is grounded in Community-Based Participatory Research (CBPR) principles and utilizes a mixed methods strategy to assess the needs and concerns of caregivers. This mixed methods study utilizes a quantitative arm of the study involving development and administration of a written survey eliciting sociodemographic characteristics, as well as knowledge-attitudes-behaviors on caregiving. The qualitative arm of the study is with focus groups intended to clarify and extend information learned through survey data. Study findings can assist a homestead community in determining the types of resources and support essential for long-term care to mitigate caregiver burnout and simultaneously provide services that enhance kūpuna care. Results will inform providing safe, compassionate, community-based culturally appropriate care in the community for kūpuna who prefer to age in place. This dissertation research aligns with the focus of social welfare on health equity and cultural competence focusing on Native Hawaiians, a marginalized population and the need to provide relevant ADRD services for all. Further, this research contributes to the growing literature on aging in place from an Indigenous (Native Hawaiian) cultural perspective. This research underscores the importance of community “self”-determination. Specifically, study results indicate the cultural preference is caring for kūpuna is a community kuleana (responsibility). By extension, there is a need for community training that strengthens the capacity to address this kuleana. Current and emerging community leaders from across the generational continuum would benefit from training that ensures community participation in identifying moreover, addressing kūpuna needs, as served in a spirit of caring and excellence. Findings from this study are community-specific and cannot be generalized to all Native Hawaiians and Native Hawaiian communities. Research performed in one urban homestead community may provide critical considerations for others interested in developing policy and research for/with elders and family caregivers in the context of ADRD.