European Parkinson's carers survey
In a pan-European survey carried out in 2019-2020, carers from around Europe have provided their views about the kind of impact caring for a person with Parkinson’s has on their lives.
It reveals that policies, health systems and society at large are not doing enough to support this group of people which provide vital care to people with Parkinson’s.
Key findings and recommendations
The data, collected as part of this survey, show that:
- most carers of people with Parkinson’s across Europe are experiencing emotional, financial, medical, and physical hardships – with nearly 96% facing emotional and psychological challenges;
- carers’ use of financial and practical support is generally very low (<15%), highlighting a generally unmet welfare need;
- healthcare professionals often leave carers out of the picture when drawing up treatment plans; and
- the type and quality of support for carers of people with Parkinson’s varies drastically from country to country across Europe – with carers from South-Western Europe especially relying on help from the family rather than on support provided by public welfare systems.
The EPDA recommends a five-point action plan:
- a holistic approach to Parkinson’s management is needed to fill the support-gap which currently exits at individual and societal levels. This means increasing the inclusion of carers in the circle of Parkinson’s health policies, medical treatment, information, and support;
- healthcare professionals should get better at ensuring carers play an active part in the on-going Parkinson’s treatment and care journey, and are given appropriate information and direction to support services;
- Parkinson’s organisations could improve their engagement with carers, by improving specific services and information resources aimed at this group, to reduce isolation and loneliness. They could also increase their work with health services and decision makers to improve understanding of the needs of this sector;
- national welfare systems need to increase and improve their funding and policies for financial, medical, emotional, and practical support, as well as for adequate information services aimed at carers;
- European decision makers need to address areas affecting carers of people with Parkinson’s such as funding for projects that may benefit carers; and also include carers when making decisions about wider policies around access to medicine, employment and data collection.
Click on the image below to download the full EPDA Parkinson’s Carers Survey Report:
In January 2019, the EPDA began a data collection project with the goal to understand the challenges carers of people with Parkinson's have to face. We aimed to demonstrate the individual and societal cost consequences that caring has on individuals – consequences that are too often ignored by governments and decision makers across Europe.
This project was structured into five phases:
In January-February 2019, we reviewed existing research literature and similar surveys to highlight key themes and issues that are common to carers of people living with Parkinson’s and with other neurodegenerative conditions.
In March and April 2019, we conducted around 20 interviews with carers of people with Parkinson’s in eight European countries. These interviews allowed us to obtain authentic and meaningful information about the physical, emotional and financial challenges carers face, and about the impact these challenges had on their quality of life. They also revealed the use and availability of support services and tools in different European countries.
Interactive workshop meeting
The data gathered during the interviews with carers was analysed during a workshop meeting that was held in Paris on 29 April. People with Parkinson’s, carers and EPDA member organisation representatives joined in a collaborative one-day session. The feedback and input from this session was used in conjunction with the interview results to help draft the final survey.
Development of the online survey
The final online survey went live on the EPDA website in June 2019. The survey was available in 14 European languages and aimed at carers of people with Parkinson’s with a broad European scope.
Data analysis and report
A poster displaying the most important survey results was presented at the MDS Virtual Congress 2020. You can view the poster below or download a .PDF version.
An abstract titled Carers of People Living with Parkinson's Disease, the 2019 European Realities (authored by Dr Hélène Rossinot, Prof Pablo Martinez-Martin, Prof Per Odin, Prof K Ray Chaudhuri, Dr Catherine Billoët and former EPDA Vice-President Susanna Lindvall) is available upon registration to the MDS Virtual Congress 2020.
A full report outlining the results of the survey, including an analysis of data and key recommendations, was published in June 2021 – click here to download it.
Please regularly check the EPDA website and EPDA social media platforms for updates about this important research project. If you have any questions, contact firstname.lastname@example.org.
This data collection project was supported by our partner Air Liquide Healthcare.