There are more than two million older adults (65+) currently residing in long-term care facilities in the U.S., and a significant percentage are people of color living with Alzheimer’s and related dementias (ADRD). Among nursing home residents aged 65 and older, 24% are Black, and among those residents, 20% have ADRD. However, Black residents of long-term care facilities—especially those living with ADRD—are more likely than their white counterparts to reside in lower-quality facilities, and to face systemic barriers and inequities in the quality of care they receive.

To cope with inadequate care, many Black residents rely on external social support networks. However, little research has been done on the role these support networks play in leveraging better care for Black people living with ADRD. A study from the University of Minnesota School of Public Health (SPH), published in Society, aims to fill this gap.

The researchers conducted a series of focus groups with members of social support networks of Black nursing home residents in Minnesota. These conversations—in which participants were asked about their experiences and perspectives on the care provided to racially and ethnically diverse long-term care residents with ADRD—revealed two major themes.

• Advocacy as a perceived obligation for members of social support networks
  • Several participants felt a moral duty to advocate for residents, stating that their advocacy was essential to ensuring that residents of color received proper care. These efforts included monitoring staff, addressing neglect, and challenging discriminatory practices.

• Situations in which social support advocacy was critical to care
  • Caregivers often intervened in specific scenarios, such as addressing unmet medical needs or ensuring residents’ voices were heard. Participants noted that having a physical presence at the care facility and engaging in proactive communication with care staff were vital tools in these efforts.

“Black residents of long-term care facilities face unique challenges, from systemic racism to poor quality of care and other stressors that lower their quality of life,” says Dionne Bailey, lead author and SPH doctoral candidate. “This work underscores the critical need to rethink how nursing homes support Black residents, particularly those with dementia. Social networks are filling a gap in care, but this should not be the solution to systemic issues. Policymakers should prioritize cultural competence, staff diversity, and other steps to create environments where every resident feels valued and properly cared for.”

Funding support for this research was provided by the National Institute on Minority Health and Health Disparities of the National Institutes of Health.