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Review
. 2022;90(2):447-459.
doi: 10.3233/JAD-220525.

Dementia Research on Facebook and Twitter: Current Practice and Challenges

Viorica Hrincu  1 , Zijian An  2 , Kenneth Joseph  2 , Yu Fei Jiang  1 , Julie M Robillard  1   3
Affiliations
Review

Dementia Research on Facebook and Twitter: Current Practice and Challenges

Viorica Hrincu et al. J Alzheimers Dis. 2022.

Abstract

Background: Social media is a powerful tool for engaging diverse audiences in dementia research. However, there is little data summarizing current content exchange in this context.

Objective: To inform ethical dementia research engagement on social media, we characterized current practices by analyzing public social media posts.

Methods: We retrieved Facebook (2-year period, N = 7,896) and Twitter (1-year period, N = 9,323) posts containing dementia research-related keywords using manual and machine learning-based search strategies. We performed qualitative and quantitative content and sentiment analyses on random samples (10%) of the posts.

Results: Top Facebook users were advocacy (45%) and health organizations (25%). On Twitter, academics/researchers were the largest user group. Prevention was the most frequently coded theme (Facebook 30%; Twitter 26%), followed by treatment (Facebook 15%; Twitter 18%). Diagnostics had the highest Facebook engagement. Sharing knowledge was the primary form of content exchange (Facebook 63%; Twitter 80%). Most shared journal articles were peer-reviewed and open access. Emotional tone was overall more positive on Facebook. Justice was a prominent ethics topic regarding inequalities related to identity and intersecting modes of marginalization in dementia research.

Conclusion: The findings indicate the importance of social media as an engagement tool of current topics in health research and reveal areas of potential for increased engagement. These data can inform consensus-based best practices for ethical social media application in dementia research.

Keywords: Access to information; Alzheimer’s disease; dementia; internet; qualitative research; social media.

PubMed Disclaimer

Conflict of interest statement

Authors’ disclosures available online (https://www.j-alz.com/manuscript-disclosures/22-0525r2).

Figures

Fig. 1
Fig. 1
Flowchart of Twitter and Facebook data collection.
Fig. 2
Fig. 2
User Types. Percentage of Facebook and Twitter user types sharing dementia research content. Percentages for each user type are of a total of the N unique users indicated for each platform.
Fig. 3
Fig. 3
Dementia research content. Percentage of dementia research themes under ‘aspect of dementia’ on Facebook and Twitter. Percentages for each theme are of a total of the N codes indicated for each platform.
Fig. 4
Fig. 4
Engagement of aspect of dementia. Percentage of social media engagement for dementia research themes on Facebook and Twitter. Facebook engagement is a sum of reactions, shares, and comments. Twitter engagement is a sum of likes, retweets, replies, and quote tweets. Percentages for each theme are of a total of the N codes indicated for each platform. ELSI, ethical, legal, and social issues.
Fig. 5
Fig. 5
Engagement of aspect of dementia excluding posts shared by academics/researchers. Percentage of social media engagement for dementia research themes on Facebook and Twitter. Facebook engagement is a sum of reactions, shares, and comments. Twitter engagement is a sum of likes, retweets, replies, and quote tweets. Percentages for each theme are of a total of the N codes indicated for each platform. ELSI, ethical, legal, and social issues.
Fig. 6
Fig. 6
Engagement of ELSI sub-themes. Percentage of social media engagement for ethical, legal, and social issues (ELSI) in dementia research content. Facebook engagement is a sum of reactions, shares, and comments. Twitter engagement is a sum of likes, retweets, replies, and quote tweets. Percentages for each sub-theme are of a total of the N codes indicated for each platform. CALD, cultural and linguistic diversity.
Fig. 7
Fig. 7
Purpose of dementia research posts. Percentage of Facebook and Twitter dementia research content by post type. Percentages for each post type are of a total of the N codes indicated for each platform.
Fig. 8
Fig. 8
Dementia journal articles. Percentage of dementia research fields for journal articles on Facebook and Twitter. Percentages for each field are of a total of the N codes indicated for each platform.
Fig. 9
Fig. 9
Polarity of dementia research on social media. Sentiment of dementia research content on Facebook and Twitter. Percentages for each polarity are of a total of the N posts indicated for each platform. P, positive; N, Negative; Neu, Neutral; None, No sentiment;+indicates strong sentiment.
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