“It’s a lonely journey”: Personal experiences and psychosocial distress among Chinese American dementia family caregivers

Abstract

AbstractBackgroundChinese American dementia caregivers are a growing but understudied population. Prior survey studies suggest they experience high rates of depressive symptoms and adverse health outcomes, but data are limited on their caregiving experiences, distress processes, and related contextual factors. The current study aims to address the literature gap with a qualitative investigation.MethodIn‐depth interviews were conducted with 18 Chinese American dementia caregivers. An interview guide was developed priori based on literature on family dementia caregivers and stress process theories. All interviews were transcribed verbatim, thematic content analysis was conducted.ResultParticipants’ ages ranged from 39 to 85 with a median age of 60 years. 70% were female, and 64% had limited English proficiency. A conceptual framework of caregiving distress process was developed based on the interview guide and major themes emerged from the data. Caregiving stress stems from a complex interaction of care‐recipients’ and caregivers’ characteristics; stress leads high levels psychosocial distress, including poor sleep, depression and anxiety, and chronic conditions. The distress process is attenuated by caregivers’ help‐ seeking, social support, and use of formal services; it is also negatively influenced by caregivers’ poor self‐care, social isolation, and self‐perceived poor mastery of caregiving. The distress experienced by Chinese American dementia caregivers is a dynamic process in the caregiving context at multiple levels, including their social networks, available health and social services, immigration policies, and social norms. Participants described their caregiving experience as a “lonely journey”, reflecting their isolation and limited social support.ConclusionOur data suggest that Chinese American dementia caregivers, especially those with limited English proficiency, experience elevated psychosocial distress. They face daunting barriers to social support and health services due to their immigrant and minority status. Culturally appropriate targeted intervention is urgently needed for this underserved and vulnerable population.