Caring for loved ones as community: Supporting caregivers of Native Hawaiians living with dementia

Abstract

Caregiving interventions can reduce caregiver burden and promote caregiver competence, yet caregiving is rooted in culture, with differing impacts of the caregiving role. Culturally adapted interventions may better address the unique experiences of diverse family caregivers. In this exploratory study, we aimed to adapt the Savvy Caregiver Program (SCP), an evidence-based caregiving intervention, with a Native Hawaiian community in Hawaiʻi. First, a community action board (CAB) and research team tailored the curriculum to include Hawaiian values, language, proverbs and examples while maintaining the program core components. Then, Native Hawaiian adults participated in the preliminary adapted program, ʻAuamo Kuleana O Nā Maʻi Poina (ʻAuamo Kuleana). We describe the experiences of caregiving for a Native Hawaiian adult living with ADRD and how we obtained feedback to refine ‘Auamo Kuleana prior to pilot testing. Individuals who participated in the 7-week session of ʻAuamo Kuleana (N = 6) were asked to complete a survey and a focus group or interview to share their experiences and provide feedback that informed a process evaluation of the program. The CAB and research team analyzed qualitative data using thematic analysis. Only one participant was actively providing care; the other five participants were interested in proactive training to support their community. Caring as a community was a common theme. Participants shared positive feedback about ʻAuamo Kuleana and participants appreciated the tailored content. As such, no changes were made to the program. Two suggestions were identified: include all family members in the program to be in alignment as a ʻohana (family) in providing care and add information about planning for their own care. Future Native Hawaiian-focused caregiving interventions should consider incorporating cultural practices and values, proactive training about dementia and caregiving, caring as a community, and family-centered (rather than dyadic) caregiving.