Abstract:
Learn how Defy Dementia, as part of Canada’s National Dementia Strategy, engaged persons with lived experience and national partners to co-design and disseminate evidence-based, culturally appropriate, and accessible public education to raise awareness about the modifiable risk factors for dementia, motivate behaviour change and reduce stigma.

Summary of Conversations

The discussion centered on proactive strategies for brain health and open science initiatives. An aging global population necessitates innovative approaches in healthcare and social structures due to the rising prevalence of dementia. A collaborative initiative was highlighted, emphasizing public awareness and understanding of modifiable risk factors for dementia, employing co-design with affected individuals. The discussion also covered motivations for researchers to share data, including incentives like citations and societal impact, alongside open access mandates. Publishers play a key role through policies, technology, and editorial input to alleviate barriers to participation. Technological integrations that automate data deposition, code sharing, and preprinting at the time of submission also can facilitate data sharing.

Take Away Messages/ Current Status of Challenges

• Dementia presents a growing global crisis, demanding innovative solutions and preventative measures.
• Modifiable lifestyle factors can significantly reduce dementia risk, underscoring the importance of public health initiatives.
• Co-design approaches, involving individuals with lived experience, are crucial for creating effective and accessible resources.
• Open science empowers society by enabling informed decisions and addressing global challenges.
• Researchers are motivated to share data primarily for recognition through citations and to achieve societal impact.
• Lack of recognition and inconsistent data metrics remain significant barriers to open data sharing.
• Balancing open data sharing with concerns about research security, data privacy, and cultural sensitivities is essential.
• Funder-driven data sharing mandates may face declining support, highlighting the need for a better understanding of researcher motivations.

Recommendations/Next Steps

• Expand collaborative initiatives to scale the reach of dementia prevention resources.
• Increase investment in translating resources into multiple languages and adapting content to diverse cultural contexts.
• Develop strategies to address researchers’ concerns about data privacy, security, and potential scooping.
• Implement standardized data metrics across platforms to ensure researchers receive appropriate credit for data sharing.
• Enhance technological solutions to automate data deposition, code sharing, and preprinting processes.
• Strengthen editorial interventions to encourage authors to share data and provide justification for opting out.
• Foster partnerships with national and international organizations to disseminate resources and promote widespread adoption of open science practices.
• Conduct further research to understand the declining support for funder-driven data sharing mandates and tailor policies accordingly.