Carers of people with Parkinson’s have to face physical, medical, financial and emotional challenges that may have a substantial impact on their own health, wellbeing and quality of life. In spite of this, the individual and societal cost consequences of caring are often ignored by national governments, healthcare systems and decision makers across Europe.
The EPDA, therefore, works hard to raise the profile of carers with European and national decision makers and other stakeholders, and seeks to improve their quality of life as best as we can.
Detailed information and resources aimed at Parkinson’s carers are available in the Caring and Parkinson’s section.
European survey on the challenges of Parkinson’s carers
In January 2019, the EPDA began a new data collection project; our goal is to understand the challenges carers of people with Parkinson's have to face. We aim 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.
The overall objectives of this project are:
- To successfully complete a survey that will help demonstrate the realities and consequences of caring for people with Parkinson's. We aim to provide evidence that carers in Europe have – for far too long – been largely ignored in terms of the physical and emotional challenges they face at the individual and societal level.
- To build on the results of the survey in a way that will lead to tangible tools and solutions for carers, people with Parkinson's and the wider Parkinson's community.
- A long-term outcome of the project would be the delivery of more supportive funding options for people with Parkinson's – including their families and carers.
The survey is now closed. It was open from June to early September 2019 in 14 languages – thank you very much to everyone who took the time to fill in the questionnaire!
This project is 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
Data was analysed in the last quarter of 2019. 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.
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 is supported by our partner Air Liquide Healthcare.