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 im-prove 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, regardless of whether they have previously taken part in research. Both people with and without dementia are invited to participate. The poll is available in 12 languages: Czech, Dutch, English, Finnish, French, German, Italian, Polish, Portuguese, Slovak, Spanish, and Swedish. Alzheimer Europe encourages everyone to take part and share the poll within their networks.