Behind closed doors: Using talanoa to understand the experiences of Samoan caregivers taking care of loved ones with dementia

Abstract

Dementia is a growing health challenge affecting thousands of New Zealanders. With the New Zealand government encouraging initiatives for dementia individuals to live longer within the community, and with the increasing dementia cases impacting the Pacific population at a faster rate, there is a subsequent demand for family members to assume the caregiver role. Given the negative caregiver outcomes associated with dementia caregiving, conducting research on Pacific dementia family caregivers is essential in improving caregivers’ overall quality of life and well-being. This research aims to explore and seek a better understanding of the experiences of Samoan caregivers of loved ones with dementia within the Auckland region. This study explored the knowledge and awareness of dementia at an individual level, the Samoan understandings of care, the knowledge and awareness of support services, service utilisation and engagement, and recommendations to enhance current processes and services in place. This qualitative research design employed a Samoan methodology, Fa’afaletui model, warranting culturally appropriate and meaningful processes. The data was collected by conducting eight talanoa via Zoom, guided by the three theorised perspectives of the Fa’afaletui, and the data analysis process was guided by the conception of weaving of the Fa’afaletui. The findings revealed extensive negative experiences with a direct impact on adverse caregiver outcomes. Current dementia-related support services in New Zealand are lacking, highlighting the need to improve approaches to care that reflect Samoan dementia caregiver needs. To improve service utilisation and engagement, Samoan dementia caregivers have recommended implementing and delivering culturally competent care and support. This study concludes that a great deal remains to be done in terms of providing support for dementia caregivers entirely. With an improved understanding and integration of fa’a Samoa in service delivery, this can assist in shifting attitudes and perceptions towards service utilisation and engagement for Samoan dementia caregivers. A review to adjust current practices and policies is necessary to ameliorate overall caregiver experiences and outcomes.