“If You Don’t Say Something, You Are Part of the Problem Too”: The Role of Advocacy in the Care of Black Nursing Home Residents with Dementia

Black older adults (65 +) represent 24% of all nursing home (NH) residents in the USA, and 20.2% of Black NH residents have Alzheimer’s disease and Alzheimer’s disease–related dementias (AD/ADRD). Despite their growing presence, when compared to their White counterparts, Black older adults experience worse health outcomes and are more likely to reside in lower-quality NHs, a direct byproduct of systemic racism. To cope with the stress of inadequate care delivery, many Black residents rely on external social support networks. Little research to date has explored how external social support is or can be, leveraged by Black residents for improved care delivery. Drawing on the minority stress model, we applied thematic analysis to three focus group transcripts (n = 22) conducted with Black AD/ADRD caregivers in Minnesota. We found that resident social support networks overwhelmingly adopted a “support through advocacy” mentality. Although these efforts are grounded in the care of their friends or family, advocacy behaviors often extended to other NH residents who self-identified as lacking social support. Given the disproportionate share of Black residents with AD/ADRD living in institutional-based long-term care settings, understanding both formal and informal care delivery practices, especially the role of Black resilience, is essential to delivering high-quality care.