Cultural and ethnic differences in dementia family caregiving: A comparison of the experiences of Chinese American and non‐Chinese American dementia caregivers

Abstract

AbstractBackgroundThe responsibilities of caring for a dementia patient are mentally and physically challenging, often resulting in adverse effects on a family caregiver’s psychological well‐being as well as the quality of care that the patient receives. While the experiences of White dementia caregivers from Western cultures have been well studied, there is a lack of understanding on how the racial, ethnic, and cultural nuances of caregivers from minority populations may influence dementia caregiving. Specifically, the research on Chinese American immigrant dementia caregivers is very sparse, which is concerning considering that Asian Americans are the fastest growing ethnic group in the United States and that Chinese Americans are the largest subgroup of Asian Americans. This study aims to explore the experiences of Chinese American dementia caregivers, focusing on processes of grief, coping mechanisms, and perceptions of stigma.MethodOver 100 adult Chinese American and non‐Chinese American dementia family caregivers were recruited across the U.S. Their experiences with grief, coping, and stigma were surveyed using adapted versions of pre‐existing validated grief, coping, and stigma scales (i.e., the Marwit‐Meuser Caregiver Grief Inventory, the Coping Strategies Inventory, and the Affiliate Stigma Questionnaire). Participants also had the option to elaborate on the ways their cultural values may have influenced their caregiving in open‐ended questions.ResultInteresting and important differences between Chinese American and non‐Chinese American participants' emotional and psychological reactions to caregiving have been observed. Thematic analysis of open‐ended questions revealed additional challenges characterizing Chinese American caregivers’ experiences with caregiving, including feelings of filial piety, language barriers, and discrimination and lack of support from medical facilities and professionals.ConclusionEmotional and psychological reactions to caregiving differ between Chinese American and non‐Chinese American dementia family caregivers. Recognition of these differences is important for those who work with this growing population.