Parkinson's Disease Caregiving, Level of Care Burden, Caregiving-Related Strain, and Caregiver Health

Abstract

Background: Caregiving can be a challenging experience, particularly for caregivers of people with Parkinson's disease, given the array of motor and neuropsychiatric symptoms. Elevated care tasks and demands related to these symptoms may result in greater care burden, heightened caregiving-related strain, and, in turn, poorer health for Parkinson's disease (PD) caregivers compared to non-PD caregivers. Guided by the Stress Process Model, the purpose of this study was to explore the pathways connecting PD caregiving and caregiver health, with attention to the role of care burden and caregiving-related strain. Methods: We applied path analysis in a structural equation modeling framework to data from 3116 PD and non-PD caregivers participating in the National Alliance for Caregiving and AARP's Caregiving in the U.S. 2015 and 2020 surveys. We estimated pathways between PD caregiving, care burden, caregiving-related strain (i.e., emotional, physical, and financial), and caregiver self-reported health simultaneously, then decomposed these pathways into total, indirect, and direct effects. Results: Findings show PD caregiving is indirectly linked to poorer health among caregivers through increased care burden and heightened caregiving-related strain, with additional path analysis models pointing to physical strain as an important component of caregiving-related strain in mediating the associations between PD caregiving and overall health. Conclusions: Our findings suggest a need to be especially attentive to the accumulation of care burden and caregiving-related strain-particularly physical strain-among PD caregivers, given the potential consequences for caregiver health. Solutions are needed, such as caregiver screening and caregiver-specific care plans, to better support reductions in burden and strain among PD caregivers, thereby promoting their overall health.

Keywords: Parkinson’s disease caregiving; care burden; caregiver health; caregiving-related strain.

Figure 1

Conceptual model of presence of PD, caregiver burden, caregiving-related strain, and caregiver health.

Figure 2

Results of structural equation modeling. Note: PD = Parkinson’s disease; standardized coefficients shown; all pathways shown with gray lines representing pathways that were not statistically significant; * p < 0.05, *** p < 0.001.