Proposed Title: Community Counternarratives Shattering Deep-Seeded Stereotypes Related to Aging and Dementia One Person at a Time

Authors: Lilcelia A. Williams, PhD, Hector Salazar, BSN, Christine McClure, EdD, Yuchen Zhang, BSN, Julie Klinger, MA, Melissa Glasser, PhD, Marquita Smalls, MPH, Kyaien Conner, PhD, Dara Mendez, PhD, Thomas Karikari, PhD, Ann D. Cohen, PhD, C. Elizabeth Shaaban, PhD, Jennifer H. Lingler, PhD

Background: The negative impact of stereotypes and discrimination on the health outcomes Black American adults is well documented. These structural and social forces may be compounded in the context of stigmatizing conditions like Alzheimer’s disease (AD), indirectly contributing to delays in detection and diagnosis. Brain and Cognitive HEalth Campaign for Allegheny County (Brain CHEC-AC) aims to disrupt stereotypical perceptions of cognitive aging and dementia with the goal of promoting early detection of AD in Black communities. Phase one of Brain CHEC-AC focused on identifying such counternarratives within the lived experience of community members.   

Methods: We collected ethnographic data during group discussions (n=14) and individual interviews (n=25) with more than 140 Black American adults in the Southwest region of Pennsylvania. Interviews were structured to assess community members’ knowledge about AD and to identify common stereotypes, and stories of stereotype defiance, related to AD. Participants were purposively sampled to ensure that a range of perspectives were represented. For the present preliminary analysis, transcripts from group discussions and semi-structured interviews were analyzed using an iterative team approach to identify counternarratives.

Results: All participants were Black Americans with more than 60% identifying as female. The participants’ mean age was 58.36 years (SD±19.05). Our analysis revealed six distinct counternarratives that defy stereotypes and stigmas about AD, cognitive aging, and caregiving. The following counternarratives emerged 1)acknowledge social support provided by “chosen family” as imperative, 2) depict the experience of a young male caregiver, debunking societal attributions and gender assignment of caregiving activities, 3) show defiance in expressing one’s agency and value upon being asked about one’s lived experiences relative to those in the majority social group, 4) honor the wisdom of older Black adults 5) counter fatalism by calling mental health a choice, and 6) assert that living is not merely surviving in life, and with aging.

Conclusions: Participants highlighted common stereotypes (e.g., dementia is a normal part of aging, surviving is living, caregiving is a female responsibility). The stories gleaned provide a foundation for a narrative campaign which will be deployed and evaluated to combat stigma around AD and cognitive aging in Black communities.