Objective: PD as a chronic disease interferes with the life of non professional relatives caring for the patient (carers). The aim of this survey is to highlight the physical, financial and emotional challenges facing carers of people living with Parkinson’s (PwPD) across Europe. By identifying the individual and societal cost consequences that caring has on individuals, the survey results will support the European Parkinson’s Disease Association (EPDA) develop important communication and advocacy tools to campaign for better and more timely support services aimed at carers of PwPD.

Background: The necessity to consider the holistic approach of the management of the disease arises with the need to provide sustainable solutions to enhance the management of PwPD. Carers are too often ignored by governments and decision makers across Europe. Aware of the critical role carers play, faced with a scarcity of precise data at EU level on the challenges and burden faced by carers the EPDA conducted an online survey.

Method: The survey questionnaire was co-built with representatives of EPDA national member organisations (MO) to address carers’ emotional or physical or financials challenges. Launched online (14 languages) on 06/10 closed 09/06 2019 it was promoted by EPDA’ MO & physicians. Responses gathered through online questionnaire. Statistical analysis of quantitative data with a confidence interval (margin of error) at 2% and confidence level of 95%. Thematic breakdown of results based on geographic clusters of respondents.

Results: 1790 completed questionnaires, from 30 EU countries [Figure1] showed that carers are in average ten years younger than PwPs, are mostly women (80,5%), not only spouses but also children and that PwPD and carers usually live together. 95.9% of carers are impacted by emotional challenges -with stress mentioned by over 50% of them [Figure2];85.9% suffer from a physical strain such as pain (one of the highest impact on carers’ quality of life) or fatigue (brought up by 53,8% of them) strongly impacting their life and health [Figure3], and 68.5% face financial issues due to their responsibilities as a carer. [Figure4].

Conclusion: Caring for a PwPD in the EU can lead to social and financial precariousness as well as a decline in health which is adding cost to the healthcare systems. Tools have to be developed and financed to counterface these challenges. It is a public health emergency to develop a holistic management of PD.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/carers-of-people-living-with-parkinsons-disease-the-2019-european-realities/