Perceptions and Experiences of Family Caregivers of Older First-Generation Chinese Americans with Dementia

Abstract

Objective: This qualitative study aimed to explore the experiences and perceptions of Chinese American family caregivers of individuals with dementia during the COVID-19 pandemic. Methods: The study utilized the Health Belief Model and the National Institute on Minority Health and Health Disparities framework to develop a semi-structured interview guide. Purposive sampling and phone recruitment were used with the assistance of the collaborating agency. One-on-one in-depth interviews were conducted in Chinese, Cantonese, and English. Intercoder reliability between two coders was assessed before the primary coder completed the thematic analysis of the interviews. The Chinese-English bilingual committee expert reviewed the identified themes and the translation. Results: The study included 16 Chinese American caregivers sponsored by the Medicare and Medicaid funded Program for All-Inclusive Care for the Elderly (PACE). Caregivers understood the severity of dementia and showed self-efficacy in caregiving; however, most of them could not distinguish between natural aging and dementia. At the individual level, coping skills and self-efficacy played a crucial role in facilitating positive caregiving experiences. At the interpersonal level, care recipients' self-motivation, social engagement, and familial support were identified as facilitators. Community-level facilitators included transportation, interpretation services, community events, and the presence of community-based organizations. At the societal level, filial respect influenced caregivers' attitudes toward dementia care. Various barriers were also identified. At the individual level, a lack of achievement hindered caregivers' motivation to provide persistent care. Dementia symptoms and functional declines in care recipients posed challenges as an interpersonal level barrier. At the community level, spiritual or support groups played limited roles in caregiver’s life. At the societal level, the COVID-19 pandemic disrupted community activities and family’s care plans, while Asian xenophobia heightened caregivers’ burden. Additionally, the cultural and political circumstances of caregivers' home countries, along with restrictive US immigration policies, limited the available human and social resources for these caregivers. Implications: Implications for practice include the development of tailored educational materials, support from community organizations, and governmental assistance through initiatives like PACE. More research is needed to understand the effects of PACE on care burden and health outcomes of caregivers, particularly in Chinese Americans and other marginalized populations, across sites and states to inform program enhancements.