A multidimensional approach to studying the impact of caregiving on health among dementia caregivers - Family caregiving is both essential and highly respected in contemporary societies. In the U.S., very few
affordable alternatives to family caregiving are available for the care of individuals living with Alzheimer’s disease
and related dementia (ADRD). Protecting and promoting the health and well-being of family caregivers is crucial.
The daily care and supervision of a family member living with ADRD have been associated with threats to the
health and well-being of family caregivers, who often experience an overall decrease in quality of life indicators.
Although more is known about the relationship of caregiving and psychosocial distress, such as depression, far
less is known of the relationship between ADRD caregiving and physical health indicators and the relationship
between changes in these indicators and health outcomes. Furthermore, not all caregivers have poor health
effects, but we have little understanding of the profile of various health responses to caregiving. In particular,
spouses of persons with ADRD are challenged by a chronic diseases and, for some, poor health outcomes; yet
the health effects of caregiving vary across caregivers with some having few physical health issues and others
having multiple physical health issues. A multidimensional approach inclusive of health indicators and outcomes
from multiple data sources is required to fill this gap in the study of the physical health of family caregivers. The
purpose of the proposed project is to characterize the health risks of ADRD spousal caregivers using self-reports
of physical health and functioning, clinical health indicators, and health care utilization data represented in
electronic health records (EHR). The research team will recruit spousal caregivers of individuals with ADRD,
extract various health indicators from EHRs, including health care utilization, and use survey methods with a
cross-sectional design to collect self-reported health and functioning as well as health behaviors. More
specifically, using latent class analysis, this proposal addresses three specific aims: 1) characterize health risk
profiles through a combination of objective and subjective assessments of health status among spousal
caregivers; 2) Identify the degree of intensity of caregiving experience and patterns of health care utilization
among spousal caregivers for the distinct health risk profiles determined in Aim 1; and 3) assess health promotion
behaviors that serve as protective factors in the relationship between stressful caregiving experiences and health
care utilization among subgroups of caregivers. Consistent with the purpose of the R21 funding mechanism, the
expected outcomes of the project will provide a method for monitoring spousal caregiver health indicators. The
study will inform the development of tailored interventions to address health risks among spousal ADRD
caregivers. Findings from the study will provide the need for, and design of caregiver health risk identification
algorithms that can be integrated into EHRs. The long-term goal of the proposed research is to improve
recognition of caregivers’ health risks and to develop tailored interventions that reduce caregivers’ physical
health burdens associated with providing continuous care for their spouses with ADRD in health care systems.
