Mapping the Trajectories of Social Relations for White, Black, and Hispanic/Latino Individuals Approaching Death with Dementia.

Objectives: Larger social networks are associated with a lower risk of dementia, but little is known about how social networks shift as someone with dementia approaches death. We investigate these shifts while giving special attention to race and ethnicity, which are related to different dementia patterns, social network sizes, and social network makeup.

Methods: Participants: 2,301 deceased people with dementia from the Health and Retirement Study (2004-2018; waves=8). Multilevel models estimated associations between dementia, race/ethnicity, time, and close family and friend network size while controlling for several variables, including instrumental activities of daily living, age, proxy status, and disease count, using retrospective and proxy data.

Results: Social networks shrank linearly as death approached. A decrease in close friends primarily drove shrinkage. However, when race/ethnicity was crossed with time, Hispanic/Latino persons with dementia showed the opposite pattern. As Hispanic/Latino persons with dementia approached death, the number of close extended family members increased dramatically: one additional person every 4 years.

Discussion: Dementia risk, social networks, and patterns of social network shrinking are unequal across people of different races and ethnicities. Adding nuance to known patterns, network shrinkage may be a phenomenon of White persons with dementia. In contrast, patterns of stable or even increasing numbers of network members may better describe Black and Hispanic/Latino networks, respectively. These findings may reveal unique strengths of Black and Hispanic/Latino networks that could be leveraged to develop care and support for individuals with dementia and those they leave behind.