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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.
Disclosure Statement
No potential conflicts of interest were disclosed. (ANA grant # 90NE0034-01-00; HRSA grant # U1QHP28728)