Dementia Care Research and Psychosocial Factors

Area of Science:

• Gerontology
• Digital Health
• Sociology

Background:

• Social media is increasingly used by individuals with dementia and their care partners for support and information.
• Self-disclosure of dementia diagnosis or caregiving role on social media presents both opportunities and risks.
• Concerns exist regarding misinformation and stigma associated with online self-disclosure in dementia communities.

Purpose of the Study:

• To explore the motivations behind self-disclosure on social media among individuals with dementia and care partners.
• To investigate the potential impact of social media self-disclosure on users and their support networks.
• To identify key themes and challenges discussed in online dementia communities.

Main Methods:

• Content and thematic analysis of public social media posts from Facebook and Reddit.
• Analysis of over 22,000 posts from 36 Facebook groups/pages and over 1,000 posts from Reddit.
• Examination of comments and replies to understand user interactions and support dynamics.

Main Results:

• Advice and information seeking are primary motivations for self-disclosure.
• Users frequently share personal experiences and seek insights into dementia symptoms.
• Identified themes include grief, end-of-life decisions, and functional decline challenges.

Conclusions:

• Findings will inform the creation of evidence-based resources for social media use in dementia.
• Understanding online behaviors can help mitigate risks and enhance benefits of social media for dementia communities.
• The study highlights the critical need for informed decision-making regarding online engagement for individuals affected by dementia.