Involving Societal Stakeholders in Dementia Risk Reduction: An Explorative Study

Optimal dementia risk reduction requires a combination of individual- and population-level approaches. Societal stakeholders play a crucial role by raising awareness, supporting individual lifestyle change, and/or influencing certain risk factors through policy changes. This study aimed to identify relevant societal stakeholders for promoting dementia risk reduction, and explore perspectives regarding their role.

We used a qualitative approach with participatory research elements (i.e., collaborating with stakeholders in the research). An advisory panel of citizens (n = 14) was installed to provide input on various study aspects (e.g., study design and interpretation of findings). Thereafter, data collection involved two phases: 1) identification of potentially relevant societal stakeholders (based on advisory panel discussions, a conference workshop, and online searches); and 2) exploration of perspectives of participants from selected stakeholder domains, through 18 interviews and one focus group (total N = 32). We analysed data using thematic analysis.

Phase 2 revealed that participants, such as religious leaders, labour service employees and board members of student associations, had limited knowledge and experienced little responsibility to act as a societal stakeholder in the context of dementia risk reduction. Rather, they called for policy and regulations to make dementia risk reduction efforts obligatory and a public priority. Participants recommended incorporating information on dementia and dementia risk in general health campaigns, rather than organising dementia-specific campaigns, and stressed the need to stimulate dementia risk reduction early in life.

Effective dementia risk reduction could benefit from increased stakeholder involvement, as well as imposed policy-level risk reduction measures. Our findings also highlight the importance of including dementia in education and healthy lifestyle programmes from an early age. Future studies are needed to validate our findings on a larger scale, and among different stakeholders.

Citizens were involved in study conceptualisation and design, and in the interpretation, reporting and dissemination of findings.