Abstract
Involvement in caregiving, either as the caregiver or care recipient, is a near ubiquitous experience that confronts most American families. In particular, family and friends are often the first in line to help when older adults are unable to independently care for themselves. A significant body of research focuses on caregiving as a risk factor for poor health and social outcomes among caregivers, but few studies examine how caregiving contexts shape the sufficiency of care and healthcare utilization outcomes of older adults who rely on help from family caregivers.Using an adapted stress process model as the conceptual framework, this dissertation examines how caregiving contexts, including caregiving network configuration characteristics, supports, and engagement by health care providers, shape care recipients’ sufficiency of care and healthcare utilization. This three-paper dissertation uses data from the National Health and Aging Trends Study and its linked caregiver survey, the National Study of Caregiving. These data represent dual perspectives of older Medicare beneficiaries in the U.S. and their family and unpaid caregivers, which allows construction and analysis of measures of the caregiving network rather than a focus on a single “primary” caregiver.
Paper 1 examines whether caregiving network characteristics (e.g., if and how multiple caregivers of the same care recipient distribute tasks, involvement of paid caregivers, and conflict among caregivers) are associated with consequences of unmet need for care among older adults. Caregiving network characteristics are associated with care recipient demographic, health, and functional characteristics, suggesting that caregivers adapt and respond to the needs of their care recipients. Caregiving appraisal measures are prospectively related to consequences of unmet need among care recipients. However, the direction of these relationships differs between consequences related to self-care and mobility versus household and medication activities.
Paper 2 examines whether caregiving network characteristics are prospectively associated with care recipient hospitalization. This paper also examines the role of unmet care needs as a potential pathway (i.e., mediator) through which caregiving network factors might impact care recipient hospitalization. Older adults who had any paid caregivers and whose caregivers shared assisting with self-care and mobility tasks are more likely to have an overnight hospital stay; yet, other caregiving network characteristics are not associated with care recipient hospitalization. Older adults’ consequences of unmet need for care did not mediate the relationship between caregiving network characteristics and hospitalization.
Paper 3 assesses whether the sufficiency of caregiver-provider engagement (i.e., caregiver training and quality of medical provider communication with caregivers) is associated with care recipient hospitalization. Caregiver training for post-hospital care is prospectively associated with lower likelihood of multiple hospital stays among care recipients. Select aspects of provider communication (i.e., caregivers said communication helped a lot; caregivers were asked if they needed help managing care) are prospectively related to increased likelihood of care recipient hospitalization.
Family caregivers have an essential role in supporting the physical, mental, and social health of older adults. Findings from this dissertation underscore the complex reciprocal relationship between older adults and their caregiving networks. Findings also highlight the ongoing need for policies and practices that establish a more family-centered long-term services and supports and health care system. These implications include recognizing family caregivers as crucial partners in their care recipients’ health and well-being through systematically identifying, assessing, supporting, training, and engaging individual caregivers and caregiving networks. Recognizing and treating family caregivers as vital to older adults’ health presents an opportunity to increase the value of care for this population, and for caregivers themselves. This is particularly important as demographic trends including an aging population with longer life expectancies will continue to increase reliance on family caregivers in future years.