Factors of importance to the caregiver burden experienced by family caregivers of Parkinson’s disease patients

Background and aims: Caregivers of Parkinson’s disease patients are vulnerable to detrimental factors related to caregiving because of the progressive course of the disease. Studies of caregivers of these patients are scarce. The aim of this study was to examine the caregiver burden in Parkinson’s disease by analyzing caregiver and patient-related factors. Methods: Every 3rd patient with Parkinson’s disease registered at the outpatient clinic of the Neurology Department was invited to participate. One year after the first investigation, a follow-up was performed with a study of caregiver burden. A total of 65 caregivers took part. In-home interviews with patients and caregivers were performed. Assessments: a) caregiver burden, 22 items, comprising five indices: general strain, isolation, disappointment, emotional involvement, and environment; b) sense of coherence, 13 items, with the components comprehensibility, manageability and meaningfulness; c) depressive symptoms, using the Geriatric Depression Scale, 15 items; d) social contacts, 6 items; e) patient subjective health, assessed with the Parkinson’s disease questionnaire, 39 items; and f) patient functional status. Results: Bivariate analyses showed significant correlations between caregiver burden and sense of coherence in caregivers, patient functional status, depressive symptoms in caregiver and patient, patient subjective health and time since diagnosis. Multivariate analysis showed depressive symptoms and sense of coherence in caregiver, and functional status in patient to be the most important variables for caregiver burden. Conclusions: To ease the caregiver burden, attention should be paid to patient functional status and caregivers depressive symptoms. The sense of coherence in caregivers is probably more difficult to influence.