Three essays on the caregiving experience
Creators: name: Pristavec, Teja
Publisher: name: No Publisher Supplied
Year: 2018

description: BACKGROUND: Informal caregiving is a key part of the US long-term care system. A growing number of older adults with chronic and degenerative illnesses live independently in their communities despite difficulties, and informal caregivers are often their only source of assistance. To support caregivers’ well-being, facilitate continued caregiving, and enable older adults to age in place, it is important to better understand informal caregivers’ experiences.    OBJECTIVES: This dissertation aims to better understand the experiences of providing informal care to US older adults by examining caregivers’ perceived burdens and benefits, how formal and informal social support shape caregivers’ experiences, and the implications of these experiences for recipients’ mental health.     DATA: I link National Health and Aging Trends Study (NHATS) and National Study of Caregiving (NSOC) data. NHATS is a nationally representative longitudinal study of aging and its social implications. NSOC is its nationally representative companion study, collecting information from persons from whom NHATS older adults indicated receiving assistance. I match NHATS and NSOC respondents to obtain self-reports from both caregiving dyad members.     METHODS: I conduct latent class analysis (LCA), LCA regression analysis, and binary logistic regression analysis on a nationally representative sample of informal caregivers to US older adults, matched to their care recipients. I use multiple imputation to address missing data and adjust all models for conceptually relevant caregiver, care recipient, and care arrangement factors.    RESULTS: I find five distinct caregiving experience types among US informal caregivers, and I identify demographic and socioeconomic factors associated with experience types. Combinations of the presence or absence, level, and dimension of perceived burden and benefits uniquely characterize each subtype. Further, receiving informal support from family and friends is associated with experience types characterized primarily by benefits, rather than burden. Conversely, caregivers reporting formal assistance use are more likely to have burdensome versus beneficial or ambivalent experiences. Finally, older adults receiving care from persons who perceive caregiving as beneficial are less likely to experience depression three years post-baseline than their counterparts receiving assistance from caregivers reporting only burden. Older adults receiving care from persons reporting benefits, even alongside low to moderate burden, are also less likely to experience anxiety.    CONCLUSIONS: This dissertation shows that caregiving experiences can be ambivalent, but may respond to support provision, and that caregivers’ beneficial experiences have positive implications for recipient mental health beyond care provision itself. Given that caregivers who perceive benefits continue on in their roles longer than those perceiving burden, researchers and decision-makers may use this knowledge to facilitate more beneficial caregiving experiences, and to design a long-term care system well-suited to the needs of both caregivers and care recipients.