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Alzheimer Europe has launched a new public opinion poll aimed at exploring public attitudes towards participating in dementia research and sharing personal data for research purposes. This initiative addresses a critical gap in understanding European perspectives on these issues, which are central to the success and inclusivity of dementia research.
Despite the importance of diverse participation in studies, research is often limited by the involvement of small, selective populations. This can reduce the generalisability of findings and hinder progress. Understanding what motivates or discourages individuals from taking part in research—and how people feel about data sharing—is essential for developing meaningful strategies to improve engagement.
The poll is part of a broader initiative led by Alzheimer Europe and builds on their previous work mapping data sharing practices in the dementia field. Developed in collaboration with member organisations, the European Working Group of People with Dementia, and the European Dementia Carers Working Group, the poll investigates:
- Past experiences with research,
- Barriers and facilitators to participation,
- Attitudes towards sharing personal data for research.
The results will help map differences across European countries and identify potential predictors of future research engagement. Findings will inform a report and recommendations to boost participation and data sharing, and will be made publicly available on the Alzheimer Europe website.
The poll is open to all residents of European countries, including those with and without dementia, and no previous research participation is required. It takes around 10 minutes to complete and is available in 11 languages: Czech, Dutch, English, Finnish, French, German, Italian, Polish, Portuguese, Spanish, and Swedish.
“To ensure dementia research is inclusive and relevant, we need to better understand how people across Europe feel about taking part. By exploring public attitudes towards participation and data sharing, this poll will help us build a clearer picture of what supports or discourages involvement in research.” Jean Georges, Executive Director, Alzheimer Europe
Support the poll
Please consider completing the poll yourself and sharing it through your networks. It is easily accessible on smartphones, laptops, or tablets via the Alzheimer Europe website.
