Care Settings and Clinical Characteristics of Older Adults with Moderately Severe Dementia

OBJECTIVES Little population-level evidence exists to guide the development of interventions for people with dementia in non-nursing home settings. We hypothesized people living at home with moderately severe dementia would differ in social, functional, and medical characteristics from those in either residential care or nursing home settings. DESIGN Retrospective cohort study using pooled data from the National Health and Aging Trends Study, an annual survey of a nationally representative sample of Medicare beneficiaries. SETTING US national sample. PARTICIPANTS Respondents newly meeting criteria for incident moderately severe dementia, defined as probable dementia with functional impairment: 728 older adults met our definition between 2012 and 2016. MEASUREMENTS Social characteristics examined included age, sex, race/ethnicity, country of origin, income, educational attainment, partnership status, and household size. Functional characteristics included help with daily activities, falls, mobility device use, and limitation to home or bed. Medical characteristics included comorbid conditions, self-rated health, hospital stay, symptoms, and dementia behaviors. RESULTS Extrapolated to the population, an estimated 3.3 million older adults developed incident moderately severe dementia between 2012 and 2016. Within this cohort, 64% received care at home, 19% in residential care, and 17% in a nursing facility. social, functional, and medical characteristics differed across care settings. Older adults living at home were 2 to 5 times more likely to be members of disadvantaged populations and had more medical needs: 71% reported bothersome pain compared with 60% in residential care or 59% in nursing homes. CONCLUSION Over a 5-year period, 2.1 million people lived at home with incident moderately severe dementia. People living at home had a higher prevalence of demographic characteristics associated with systematic patterns of disadvantage, more social support, less functional impairment, worse health, and more symptoms compared with people living in residential care or nursing facilities. This novel study provides insight into setting-specific differences among people with dementia.