Practical social media recommendations for dementia prevention researchers

Practical social media recommendations are needed to facilitate greater engagement in dementia prevention research. Alongside relevant experts, our aim was to develop a set of consensus recommendations that reflect the values and priorities of prospective participants to guide social media use.

We conducted a three-round, modified Delphi consisting of three online surveys and three conferences calls. The diverse, international Delphi panel comprised 16 experts with lived (n = 10) and professional (n = 6) experiences. Consensus was defined a priori as ≥ 70% agreement.

Twenty-six items achieved consensus. Two items reached consensus in round 1: ethical considerations of closed social media groups (88%) and of social media users sharing prevention content with connections who are not on social media (79%). Nine items reached consensus in round 2, related to misinformation (79%), stigma (93%), and other key aspects of social media communication. After revisions, 15 items reached consensus in the final round. These items included: identifying when researchers ought to engage, managing closed social media groups, rankings of short form content, prioritizing lay summaries and multimedia resources, and rankings of preferred language. One item about the language of prevention for audiences living with dementia did not reach consensus. Final consensus items formed the new set of recommendations, which we organized into seven social media use cases. These use cases include setting up a social media page or community, handling online misinformation, actively challenging stigma, handling difficult online interactions, introducing new research to the public, help with study recruitment, and the language of prevention when writing posts.

These consensus recommendations can help dementia prevention researchers harness social media use for the purposes of public engagement and uphold the norms and values specific to the dementia research and broader communities.

We created social media recommendations with research and community experts.Recommendations cover key ethical considerations for dementia prevention research.Areas include misinformation, stigma, information updates, and preferred language.Full consensus recommendations are organized into seven social media use cases.