Caregiver burden in Parkinson's disease: a nationwide observational survey.

Abstract

Background: Caregivers play an important role in Parkinson's disease (PD), especially in the advanced stages. Aim of this study is to evaluate the caregiver burden of PD in an Italian sample of caregivers.

Materials and methods: An online anonymous survey was conducted among Italian caregivers funded by "Fondazione LIMPE per il Parkinson ONLUS" and "Confederazione Parkinson Italia". The survey encompassed several dimensions (i.e. caregiving, work, economic and personal health) related to caregivers' activities and patients' characteristics.

Results: The survey was completed by 478 caregivers, 361 were women (75%), and the majority had an age included between 55 and 70 years old (46.4%). The burden of assistance increased from 1 to 2 days weekly in the first period of the disease to all the weekly days with the progression of the disease. 15% of caregivers reported not working because of assistance, and among caregivers who were still working, almost 70% reported at least one working day lost monthly due to caregiving activities. Concerning health, most caregivers reported an impact on health due to the assistance, in terms of "excessive tiredness" (74.6%), and "lack of sleep" (60.5%) as the most impacting disturbances. Considering gender, women caregivers reported that they could not work due to the assistance and complained a higher impact on health than men caregivers.

Conclusion: Caregivers of PD patients experienced and reported the presence of caregiver burden in several domains. Additionally, a gender-related pattern was present suggesting the need of a customized support to enhance awareness and minimizing caregiver burden.