Characteristics of Informal Caregivers and Social Participation of People with Dementia.

Abstract

Background and objectives: Social participation is associated with increased quality of life and well-being but declines following onset of dementia. Informal caregivers may facilitate social participation among people with dementia. This study aims to identify characteristics of informal caregivers associated with social participation of people with dementia in valued activities.

Research design and methods: This cross-sectional study used data from the 2011, 2015, and 2017 National Health and Aging Trends Study (NHATS) and the National Study of Caregiving (NSOC). NHATS respondents with possible or probable dementia and a family caregiver were included (N=1,060). Respondents were asked whether they participated in each of five social activities during the past month. Valued activities were considered somewhat or very important. Survey weighted logistic regression models were computed to identify characteristics of primary informal caregivers associated with participation of people with dementia in social activities.

Results: Social participation of people with dementia was not independently associated with sociodemographic variables or relationship to the primary caregiver (spouse/partner, adult child, or other relative/non-relative). Social participation of primary caregivers was associated with increased participation of people with dementia in the same activity for visiting friends/family (OR=1.88, p=0.016), attending religious services (OR=4.82, p<0.001), and volunteering (OR=3.25, p=0.015), while greater caregiver external support was associated with increased participation of people with dementia in organized activities (OR=1.37, p=0.022).

Discussion and implications: Assets of informal primary caregivers found to promote social participation of people dementia include traveling to the person with dementia's home, being socially active themselves and utilizing support services.