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2023 Alzheimer's Association Research Grant (AARG)

Self-disclosure about dementia on social media: evidence-informed guidance

How can social media be used to promote dementia awareness and research?

Julie Robillard, Ph.D.
University of British Columbia
Vancouver, Canada


Social media may be an effective tool in promoting interest in clinical research and facilitating recruitment in clinical trials. Studies have shown that dementia-related social media posts have helped bring awareness to dementia research and can help to reduce the stigma associated with dementia. However, researchers and the general public have been hesitant to use social media because of ethical issues like privacy and data misinformation. Dr. Julie Robillard and colleagues aim to develop evidence-based guidelines for using social media platforms in the dementia community.

Research Plan

For this study, Dr. Robillard and team will begin by examining the current ways in which dementia research and awareness is discussed across social media platforms. Using an advanced computer science technique called machine learning, a form of artificial intelligence, they will identify trends in current social media usage. Additionally, they will also conduct surveys and interviews with individuals living with dementia as well as their caregivers to examine their motivations for dementia-related social media posts. Lastly, the researchers will bring together a panel of experts to review the data acquired by the study and to develop guidelines for dementia-related social media usage.


If successful, the results of this project could develop a novel and cost-effective strategy for promoting dementia awareness as well as facilitate dementia research.

This Project has been made possible by the Canada Brain Research Fund (CBRF), an innovative arrangement between the Government of Canada (through Health Canada) and Brain Canada Foundation, and of the Alzheimer’s Association. To date, Health Canada has invested over $130 million through the CBRF which has been matched by Brain Canada Foundation and its donors and partners.

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