Working with culture: a qualitative analysis of barriers to the recruitment of Chinese-American family caregivers for dementia research

The National Institutes of Health is making efforts to increase the representation of minority elders in aging research. While it is often noted that cultural barriers may make the recruitment of minority elders into research more difficult, relatively little empirical exists to support this claim. The purpose of this study was to identify sociocultural barriers to recruitment that emerged during a four-year study of dementia caregiving among Chinese families in the Boston area. More specifically, this paper examines how culturally shaped conceptions of health, aging, and dementia impacted the recruitment process. This paper is based on a qualitative analysis of interviews with 23 Chinese families and extensive fieldnotes generated by project ethnographers and interviewers. The following themes emerged in this analysis: 1) dementia-related changes were construed as a normal part of the aging process rather than a disease, making it more difficult to identify dementia-affected elders and to recruit families, 2) research participation was viewed as potentially harmful because it can lead to excessive worry 3) Alzheimer's disease carries a social stigma among Chinese, leading families to shun formal diagnosis and research participation, and 4) practitioners viewed research as an intrusion offering no direct benefit to participants.