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V. Hrincu, G. Zaleski, J.M. Robillard

J Prev Alz Dis 2024;2(11):274-284

online engagement for dementia prevention research. Existing social media guidelines are broad and lack empirical justification reflecting the values and priorities of the dementia community and the challenges specific to prevention research. OBJECTIVES: By engaging professional and community experts, we sought to identify the ethical issues, motivators, and barriers pertaining to social media engagement for dementia prevention research. DESIGN: Semi-structured, qualitative interviews conducted online. SETTING: We recruited participants using a combination of accessible online databases, advertisements/posters through organizational newsletters and websites, social media, registries, and from our network of colleagues. PARTICIPANTS: Professional experts working in dementia research (n=15; e.g., researchers, coordinators) and experts with lived experience (n=14). Experts were from Canada, the USA, the UK, and Chile. MEASUREMENTS: Discussions were analyzed using thematic qualitative analysis methods. RESULTS: Professional experts revealed a dearth of social media guidelines for prevention research, relying on informal sources to supplement ethics board approval. They sought methods of strategic communication for public dialogue (e.g., misinformation, criticism). Experts by experience appreciated the educational benefits of social media but raised risks such as diminished online privacy, dementia-related stigma, being targeted for predatory practices, and misinformation. Various digital inequities (e.g., age, socioeconomic status) dampen social media’s reach to diverse publics. Participants acknowledged that younger aging populations have more digital fluency and may benefit more from social media research engagement. CONCLUSIONS: Research professionals and community members identified ethical and contextual factors surrounding the use of social media for dementia prevention, and a need for more guidance. The next project phase will use these data to inform the co-creation of ethical guidelines for brain health research.

V. Hrincu ; G. Zaleski ; J.M. Robillard ; (2024): Ethical Considerations at the Intersection of Social Media and Dementia Prevention Research. The Journal of Prevention of Alzheimer’s Disease (JPAD).

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