A survey study of Alzheimer’s stigma among Black adults: intersectionality of Black identity and biomarker diagnosis

ABSTRACT

Objective

We urgently need to understand Alzheimer’s disease (AD) stigma among Black adults. Black communities bear a disproportionate burden of AD, and recent advances in early diagnosis using AD biomarkers may affect stigma associated with AD. The goal of our study is to characterize AD stigma within our cohort of self-identified Black participants and test how AD biomarker test results may affect this stigma.

Design

We surveyed a sample of 1,150 self-identified Black adults who were randomized to read a vignette describing a fictional person, who was described as either having a positive or negative biomarker test result. After reading the vignette, participants completed the modified Family Stigma in Alzheimer’s Disease Scale (FS-ADS). We compared FS-ADS scores between groups defined by age, gender, and United States Census region. We examined interactions between these groupings and AD biomarker test result.

Results

Participants over age 65 had lower scores (lower stigma) on all 7 FS-ADS domains compared to those under 65: structural discrimination, negative severity attributions, negative aesthetic attributions, antipathy, support, pity, and social distance. In the biomarker positive condition, worries about structural discrimination were greater than in the biomarker negative condition and statistically similar in the two age groups (DOR, 0.39 [95%CI, 0.22–0.69]). This pattern of results was similar for negative symptom attributions (DOR, 0.51 [95%CI, 0.28–0.90]).

Conclusion

While older adults reported less AD stigma than younger adults, AD biomarker testing caused similarly high concerns about structural discrimination and negative severity attributions. Thus, use of AD biomarker diagnosis may increase AD stigma and exacerbate healthcare disparities known to effect AD diagnosis in some Black adults. Advances in AD diagnosis may interact with social and structural factors to differentially affect groups of Black adults.

KEYWORDS:

• Alzheimer’s biomarkers
• Black adults
• Preclinical Alzheimer’s
• Alzheimer’s stigma
• early diagnosis

Disclosure statement

No potential conflict of interest was reported by the author(s).

Contributors

S. Stites wrote the initial draft of the article. S. Stites and A. Krieger conducted and interpreted the analyses. All authors contributed to conceptualizing and writing the article.

Human participant protection

The Institutional Review Board of the University of Pennsylvania approved all procedures involving human subjects.

Additional information

Funding

This work was supported by grants from the University of Pennsylvania Alzheimer’s Disease Research Center (NIA P30 AG 072979), and the Alzheimer’s Foundation of America (No grant #). This publication is the result of work conducted by the CDC Healthy Brain Research Network. The CDC Healthy Brain Research Network is a Prevention Research Centers program funded by the CDC Healthy Aging Program-Healthy Brain Initiative. Efforts were supported in part by cooperative agreement U48 DP – 005053. The views of this publication are those of the authors and do not necessarily represent the official views of the Centers for Disease Control and Prevention. Dr. Stites was supported by the Alzheimer’s Association (AARF-17-528934) and the National Institute on Aging (1K23AG065442, 1K23AG065442-03S1). Dr. Largent was supported by the National Institute on Aging (K01AG064123) and the Greenwall Faculty Scholars Program (No grant #).