Reduced life-space of non-professional caregivers to Parkinson's disease patients with increased disease duration

Abstract

Objective: To evaluate the impact of Parkinson's disease (PD) on unpaid, non-professional caregiver (CG) social relationships and related issues, as well as home-help services, over the time-course of the disease.

Materials and methods: Cross-sectional telephone survey using a structured questionnaire where CGs were divided into three groups with regard to care-giving/PD duration: 0-4, 5-10 and >11 years.

Results: 404/451 CGs responded. Their relationships to friends, the patient, parents, other relatives, workmates and own children were impaired in 30%, 26%, 20%, 20%, 15% and 7% of the cases, respectively, with a significant increase in impaired parent and friends relations with the longest care-giving duration. More than half with the longest care-giving duration also experienced limitations in social activities, e.g. seeing friends and carrying out leisure activities. Of all CGs 11% used professional home-service help, with a mean of 8h assistance/week, however with no increased effect on possibilities to social activities. Of the 30% of CGs below the age of 65, one-third was on early retirement or sick leave and 40% of the remaining two-thirds worked part-time due to the patient-care commitment. Caregivers still working reported no more possibilities to social activities.

Conclusions: Confinement caused by looking after PD patients may disorganize the life of the entire family and have adverse social consequences for unpaid CGs. This could disrupt the established balance within the family, limiting and narrowing the CGs' life-space. The narrowed life-space of these CGs must be considered and acted upon when offering and planning healthcare.