Introduction/Rationale: In the US, Asian Americans are the fastest growing minority group, yet very little is known about their preparedness for dementia. Asian Americans report perceived discrimination and provider bias when receiving dementia care in addition to language barriers and lack of culturally appropriate services. We need linguistically accessible and culturally meaningful resources to support the occupation of caregiving for this population.
Objectives: This study sought to explore cultural perspectives and caregiving needs of Asian American caregivers of older adults with dementia to inform the development of a culturally-responsive caregiver training program.
Methods: This study used a community-engaged research approach and exploratory qualitative design. A community advisory board co-designed data collection activities. Three focus groups were conducted – one in Hindi/Urdu with South Asian American caregivers (hybrid), one in Mandarin and one in Cantonese with Chinese American caregivers (in-person). Date were thematically coded for an 85% intercoder agreement.
Impact/Results: Twenty-six caregivers participated in focus groups. The following themes were identified: Caregiver Concerns (Unsafe Behaviors, Managing Dementia Behaviors); Caregiver Needs (Tangible support, Informational support, Esteem support); Caregiver Impact (Mental & Emotional Stress, Lack of Personal Time); Future Planning (Preference for caregiving at home vs. institutional placement); Misunderstanding and mistrust b/w family and paid caregivers. The ecological validity framework was used to translate themes to a responsive caregiver training program.
Conclusion/Contribution to the occupational therapy profession: There is a need for customized programs that address four interrelated dimensions of caregiver support including the individual with dementia and their cultural beliefs, the family, the cultural community including bilingual/bicultural supports, and service systems.