Exploring the Impact of Dementia in Samoan Culture: A Qualitative Study on Community Perspective

Abstract

ABSTRACT Purpose: Explore if and how American Samoan cultural norms influence caregivers’ knowledge, attitudes, and care choices for person’s living with Alzheimer’s Dementia (AD).Design: This pilot study used mixed methods.Methods: 1) Quantitative survey: measuring knowledge/attitudes towards AD (n = 80); 2) Qualitative techniques: a) Focus groups (n= 54) with caregivers; b) Semi-structured interviews (n=26) with health professionals; and c) In-depth interviews (n=3) with key informants. Emergent themes were created using data from all methods.Findings: Quantitative analyses revealed 50% of participants identified AD as normal aging, 83% as mental illness. The majority of participants believed elders with AD do not experience pain (70%) and should be cared for solely at home (74%). Qualitative evidence showed dissonance between cultural norms of respect for elders, familial caregiving duty, shame in others observing elders’ dementia-related behaviours, and the current language used to describe AD.Conclusions: Our findings show a need for developing and disseminating culturally sensitive terminology for AD to destigmatize and transmute attitudes, knowledge and care choices for elders living with AD.Clinical Evidence: American Samoan terminology for dementia is discordant with its cultural norms, thus shaping caregivers’ perceptions of AD and influencing care choices for managing AD symptoms.