‘It’s a lonely journey’: caregiving experiences and psychosocial distress among Chinese American dementia family caregivers

Abstract

Objectives

Chinese American family caregivers of persons with Alzheimer’s disease and related dementia (ADRD) are a vulnerable but understudied population. The goal of this qualitative study was to examine their caregiving experiences and psychosocial distress process and explore intervention strategies.

Methods

In-depth individual interviews were conducted with 18 Chinese American dementia caregivers. All interviews were transcribed verbatim; thematic content analysis was conducted to construct a conceptual framework.

Results

All participants reported high levels of caregiving stress associated with care-recipients’ advanced symptoms and required assistance in activities in daily living. The relationship of caregiver and care-recipient was strained in their roles transition. The complex healthcare system, insurance policies, and a lack of linguistically appropriate services aggravated their psychosocial distress. Chinese cultural norms on ‘family harmony’ hindered their seeking of social support. Prolonged caregiving stress led to physical and mental impairment, including poor sleep, depression, and chronic conditions. Participants described their caregiving experience as ‘a lonely journey’ with a pervasive sense of hopelessness and withdrawal; their distress process was positively or negatively influenced by their coping strategies. All participants were eager for any kind of support; especially culturally appropriate programs that could improve their caregiving skills, self-care, and access to services.

Conclusion

Our data suggest that Chinese American dementia caregivers, especially those with limited English proficiency, experience elevated psychosocial distress, which was aggravated by the 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.

Keywords:

• Alzheimer’s disease and related dementias
• caregivers
• psychosocial distress
• qualitative study
• conceptual framework

Disclosure statement

No potential conflict of interest was reported by the authors.

Additional information

Funding

The study was funded by the Virginia Center for Alzheimer’s and Related Diseases Research Award Fund (PI: YAH) and Pilot Grant from Emory Roybal Center for Dementia Caregiver Mastery (P30AG064200) (PI: YAH). We thank all participants in the study.