Public opinion survey
Dementia research participation and data sharing in Europe
Explore views on dementia research participation and data sharing among the general public in Europe.
About this survey
This explorer presents overall survey results only. It does not include subgroup breakdowns by age, gender, education or dementia experience.
Country figures show respondent distribution, not population-weighted representation. This explorer reflects the aggregate survey findings only.
Summary
Attitudes towards participation in dementia research and data sharing are generally positive, but willingness to take part varies according to what participation involves.
Respondent characteristics
This section summarises respondent distribution, self-rated knowledge about dementia and prior experience of participating in dementia research.
Geographic distribution of respondents
The clear majority of respondents were living in France.
Respondent distribution only. This chart is not population-weighted.
Self-rated knowledge about dementia
The majority of people rated their overall knowledge as moderate.
Experience participating in dementia research
Among those who had previously participated in dementia research, the clear majority rated their overall experiences as either very positive or positive.
Likelihood of participation in hypothetical dementia research
The likelihood of participation differed substantially according to the degree of physical invasiveness involved.
Motivators for participation in dementia research
Respondents most strongly agreed with items related to primarily altruistic motives.
Facilitators of participation in dementia research
External facilitators such as encouragement from friends or family, home visits, financial compensation, parking options and the possibility of bringing another person were endorsed by around 20–30% of respondents.
Barriers to participation in dementia research
Items referring to a lack of awareness of study opportunities or never having thought about participation were most strongly endorsed.
Public attitudes towards data sharing
Attitudes towards data sharing within dementia research were generally positive.
Principles and conditions
Most respondents agreed that data sharing is important for progress in dementia research and acceptable as long as personal identity is protected.
Willingness to share data by recipient
Acceptance was highest for other researchers based in Europe and lower for researchers based outside Europe and the pharmaceutical industry.
Summary and caveats
This section reflects the aggregate survey findings only.
Summary
Willingness to take part in different study scenarios varied according to the level of physical invasiveness involved. Respondents also reported high intrinsic motivation to participate in dementia research, most commonly driven by the desire to contribute to better treatments or a cure and to benefit future generations.
Data sharing
The most frequently reported barriers to participation were a lack of awareness of research opportunities and never having considered taking part. Attitudes towards data sharing were similarly positive, with most respondents agreeing that data sharing is important for progress in dementia research and acceptable as long as personal identity is protected.
Caveats
Respondents were unevenly distributed across countries, with over half coming from France, and the survey does not fully reflect the general population in each country.
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