The Association between Caregivers' Social Participation Restriction and Caregivers' Mental Health

Background and Purpose: An estimated 53 million informal caregivers in the United States provide care, which is the backbone of supporting family and friends with limitations with activities of daily living (ADLs) and instrumental activities of daily living (ADLs). With their caregiving valued at $600 billion, informal caregivers devote significant time and effort to families and friends. Yet, informal caregivers' physical and mental health may be at risk, especially those providing high care levels. Limited knowledge of which types of restricted social participation may be most detrimental for caregivers. Thus, this study seeks to understand a) the association between social participation restrictions and health and b) which types of social participation restrictions affect the general and mental health of informal caregivers.

Methods: Data came from the National Study of Caregiving R12 in 2022 and included only respondents who reported providing ADL assistance to recipients (N=974). For dependent variables, general health was measured by the following question: Please rate your health from 5 (excellent) to 1 (poor). Mental health was assessed with psychological distress and well-being. Patient Health Questionnaire-4 was used to measure psychological distress, and Ryff Scales of Psychological Well-Being was used to measure psychological well-being. The main predictors were 1) the number of social participation restrictions and 2) the type of restricted participation (visiting family/friends, religious service, group activities, going fun/leisure activities). Covariates included age, gender, race/ethnicity, education, marital status, relationship with care recipients, caregiving provided hours, the number of IADL assistance, and the number of caregivers for a single care recipient. We conducted multivariable regression to examine the relationship between social participation restrictions and caregivers' general and mental health.

Results: The participants reported an average of 0.47 counts of social participation restrictions (SD=0.96), average distress of 6.15 (SD=2.41), and average well-being of 10.27 (SD=1.60). The number of social participation restrictions was negatively associated with general health (β=–0.072, p<0.05) and psychological well-being (β=–0.397, p<0.001) and positively associated with psychological distress (β=0.563, p<0.001). Among the social participations, it was found that restricted visiting family/friends (β=-0.837, p<0.001) was negatively associated with psychological well-being. Lastly, for the psychological distress of caregivers, it was found that restricted visiting family/friends (β=0.969, p<0.001) and participating in group activities (β=0.954, p<0.01) were positively associated.

Conclusion and Implication: We found that an increase in the number of social participation restrictions would decrease the general health and well-being of the caregivers and increase the caregivers' distress. Regarding the type of social participation, we found that restricted visiting family and friends because of their caregiving roles was associated with a decrease in psychological well-being and an increase in caregivers' distress. In particular, as restrictions on visiting family/friends are a common form of social participation that reduces psychological well-being and increases distress, it is essential to expand the caregiver support policy so caregivers get temporary relief from the burden of care, such as respite care, so that they do not have to restrict their social participations due to caregiving.