Burden, perceived health status, and mood among caregivers of Parkinson's disease patients

Abstract

The objective of this study is to describe the characteristics of the caregivers of patients with Parkinson's disease (PD) and to analyze the association between these characteristics and caregiver burden, perceived health and mood status, and identify their predictors. A multicenter, nationwide, observational, cross-sectional study that included 289 patient-caregiver pairs was conducted. Caregiver self-assessments were the Hospital Anxiety and Depression Scale (HADS), EuroQol (EQ), and Zarit Caregiver Burden Inventory (ZCBI). Most caregivers in the study were women aged 60 years or thereabouts. Over two thirds were gainfully employed or housewives, 75% were patients' spouses, and the majority (96.5%) had been permanently taking care of the patient for 6 +/- 5.4 years. Less than 5% of patients were in the most advanced stages of disease, and direct costs were 6,350 euros per patient per year. Caregivers had more mood disorders and worse health-related quality of life (HRQol; EQ-Tariff) than did the general population. Caregiver HADS and EuroQol scores displayed a weak correlation (r(S) = 0.01-0.28) with patient-related variables (disease duration, HY, SCOPA-Motor, SCOPA-AUT, HADS, PPRS, and CISI-PD) whereas the ZCBI correlated moderately (r(S) = 0.27-0.47). Among caregivers, the EQ-Tariff was significantly lower and the HADS-Anxiety scores significantly higher for women. ZCBI and HADS-depression, though not EuroQol and HADS-anxiety, scores significantly increased with increasing PD severity levels. Caregivers' affective status proved the most important factor influencing their burden and perceived health, whereas patient-related variables influenced caregiver burden and mood but not health status. In PD, prevalence of affective disorders among patients' caregivers is high and influences both burden and HRQoL.

Predictors of the psychosocial impact of being a carer of people living with Parkinson's disease: A systematic review

“…This can lead to poor psychosocial outcomes including reduced quality of life (QoL), emotional and financial strain, fatigue, sleep disturbances, social isolation and an increased risk of neuropsychiatric symptoms and chronic illness [4][5][6][7][8].…”

“…Nevertheless, experiences vary widely [5,9] and some carers adapt and cope well throughout the disease course [2]. There is a need to identify which factors predict poor psychosocial outcomes and to develop interventions that target these specific factors and those carers most at risk.…”

Anticipatory Grief among Close Relatives of Patients with Parkinson’s Disease

“…Attending caregiver support groups may lessen loneliness and increase the perception of support (15), as the responders in the present study used to. Findings of harmful factors to the caretaker should be reflected in clinical guidelines and programs for the management of PD (13,24,25).…”

Stressors identified by caregivers for veterans with Parkinson’s disease

“…After a review of validated PD caregiving instruments [1,15,18,20] , the researchers found none that integrated all the required components for this study. The preferred survey was one devised for a mailed caregiver study, contained specific questions unique to this sample of participants, and was simple and short in design so that caregivers would be more likely to complete the questionnaire.…”