Representation in research is key to ensuring findings are relevant and applicable to the wider population, yet participation remains low and often limited to a select group. Alzheimer Europe recently launched a public opinion poll, aiming to identify what motivates or discourages people from taking part in dementia research and to understand how individuals feel about data sharing. This initiative is part of a broader effort by Alzheimer Europe to increase involvement in dementia studies and to promote more effective data use in research. The poll was developed in collaboration with Alzheimer Europe’s national member organisations, the European Working Group of People with Dementia, and the European Dementia Carers Working Group. By gathering insights from people across different countries and backgrounds, the poll seeks to identify common barriers and facilitators to research participation. It also looks at past experiences with research and public perceptions of how data is handled and shared.
The findings will be used to produce a comprehensive report and practical recommendations to improve recruitment in future dementia studies and promote responsible data sharing. Results will also be published in a dedicated section of the Alzheimer Europe website.
The poll takes approximately 10 minutes to complete and is open to anyone living in a European country. No prior experience participating in dementia research is required and both people with and without dementia can participate. The poll is available in the following languages: Czech, Dutch, English, Finnish, French, German, Italian, Polish, Portuguese, Spanish and Swedish.
How can you support the poll?
We invite you to complete the poll and share it via your social media network. It can easily be accessed on smartphone, laptop, or tablet just by clicking here or scanning the QR code below. Thank you very much for your support!
