“You’re a Nobody:” An Ethnographic Analysis of the Black and African American Adult Male Perspective on Alzheimer’s Disease and the Social Determinants of Health

Abstract

Background: Black and African American (BAA) adult males have the worst overall health relative to any other race or gender in the United States. The prevalence of Alzheimer’s disease is twice as high for BAA adults. Yet, little is known about how the social determinants of health (SDoH) influence the views of BAA adult males’ perception of Alzheimer’s disease. Methods: We conducted a secondary analysis of ethnographic interview data from BAA adult male participants (n = 10) at an NIA-funded Alzheimer’s Disease Research Center. Participants included both persons living with dementia (n = 6) and individuals providing care to a person living with dementia (n = 4) who were purposively sampled to ensure that a range of perspectives were represented in the parent study, Recruitment Innovations for Diversity Enhancement in Alzheimer’s disease Research. Interview transcripts were first examined to organize the data within categories informed by the SDoH. Data within each SDoH category were then analyzed to identify themes and explore potential relationships across SDoH categories. Results: All individuals providing care to a person living with dementia identified as male with a mean age of 75 (SD ± 12.5); 80% reported three or more years of post-secondary education and 100% spontaneously mentioned elements of the SDoH in response to questions about their experiences with dementia and motivations for participation in Alzheimer’s disease research. A perceived relationship between Alzheimer’s disease and SDoH was revealed. While variations in lived experience were noted, themes including locus of control/agency, perception is reality, mistrust and othering, consistently emerged. Conclusions: Despite the shared social characteristics race and gender among the individuals providing care to a person living with dementia, their perceptions of Alzheimer’s disease in relation to SDoH were not monolithic. Findings support the need for additional research to examine the perceptions and lived experiences of Alzheimer’s disease among BAA adult males.