The relationship between Parkinson’s disease symptoms and caregiver quality of life.

Abstract

Objective: Caregivers for individuals with Parkinson's disease (PD) can experience high burden, which underlies the importance of examining the needs of caregivers to be able to support them in the caregiving role. The current study aims to assess the relationships among PD symptoms and four measures of caregiver quality of life (QOL; i.e., personal and social activities, anxiety and depression, self-care, and strain). Method: Data from 181 caregiver/care recipient dyads (N ϭ 362) were collected at a multidisciplinary PD clinic in a public, academic medical center in the southeastern United States at the time of the care recipient's first neuropsychological evaluation. Results: All PD symptoms were positively correlated with each other, as were all forms of caregiver QOL, and all PD symptoms were associated with each measure of caregiver QOL. A series of regressions suggested that demographics and PD symptoms predicted all four types of caregiver QOL, explaining 33% of the variance in caregiver personal and social activities, 24% in anxiety and depression, 28% in self-care, and 36% in strain. Female caregivers and those who provided care to male care recipients generally had worse QOL. Greater PD-related symptoms including difficulties with mobility, decreased emotional well-being, and greater nonmotor functioning impairment were unique predictors of reduced caregiver QOL. Conclusions: PD symptoms are robustly related to caregiver QOL, with mobility and nonmotor symptoms as the primary drivers of this relationship. Interventions for PD caregivers should include strategies for managing mobility and nonmotor symptoms, as well as their QOL effects on caregivers. Impact and ImplicationsResearch on the relationship between Parkinson's disease (PD) symptoms and caregiver quality of life (QOL) has been sparse. In this study, greater difficulties for individuals with PD with mobility, decreased emotional well-being, and worse nonmotor functioning were unique predictors of reduced caregiver QOL. These results suggest a tentative rubric for identifying caregivers who may need additional support. They also underscore the need for integrated behavioral health services for caregivers and individuals with PD to assist with management of PD symptoms and their effects on caregiver QOL.

Exploration of Parkinson’s Disease Symptomatology Subtypes From the Caregiver Perspective: Implications for Caregiver Burden, Depression, and Anxiety

“…The finding that caregiver depression, anxiety, and burden differed significantly by symptom clusters was expected, given the well-known impact of overall and symptom-specific caregiving demands on caregivers’ mental health and QOL. 10-13,30 Similarly, the finding that caregivers in the U.S. sample endorsed greater overall caregiver burden than caregivers in Mexico was expected, given the finding that subscales of the Zarit Burden Inventory, personal strain and role strain, were higher in this U.S. sample, as described by Smith et al 17…”

“…Exploration of non-motor subtypes from caregiver perspectives could offer unique insights, given strong relationships between patients' physical and emotional functioning and caregiver burden, emotional functioning, and health-related quality of life (HRQOL). [9][10][11][12][13] Furthermore, supporting caregiver perspectives and needs is critical given caregiver roles in improving patient outcomes, including reducing rates of institutionalization among individuals with neurodegenerative disorders. 14,15 In this study, we used a data-driven approach to explore non-motor and motor aspects of experiences of daily living, as reported by caregivers of individuals with PD at 2 sites.…”

Better quality of life and less caregiver strain in young-onset Parkinson’s disease: a multicentre retrospective cohort study

“…Caregiver strain is not well documented in relation to YOPD. Increased caregiver burden is associated with patients’ advancing age [ 20 , 21 ]. Our results support this relation between age of onset and caregiver strain, with older patients having a higher burden compared to YOPD patients.…”

Caregiver Burden in Partners of Parkinsonian Patients with Deep Brain Stimulation

“…Among the diverse non-motor aspects of PD, neuropsychiatric symptoms such as depression, psychosis or impulse control disorders play a substantial role in the daily living of PD patients. These neuropsychiatric symptoms even contribute more to the caregiver burden of PD partners than motor impairment [ 2 , 5 , 12 ]. Caregiver distress increases along with worsening neuropsychiatric symptoms and lower quality of life of PD patients [ 13 ].…”

“…General risk factors for CB are female sex, cohabilitation with the care recipient, the amount of caregiving time and effort and lack of choice [ 4 ]. Female caregivers of PD patients have worse quality of life (QOL) along with impaired mobility, emotional well-being and non-motor symptoms of the PD patient as predictors of CB [ 5 ]. CB can have detrimental effects on the quality of caregiving, as well as the mental health of the caregiver.…”