“I am so happy this community exits”: an analysis of the benefits and harms of dementia self‐disclosure on social media
Bibliographic record
Abstract
BACKGROUND: An increasing number of people living with dementia and their care partners are turning to social media platforms to seek advice, access information, share personal stories, and connect with others for support. This engagement often involves the disclosure of a dementia diagnosis or identification as a care partner, a practice that carries both potential risks and benefits. Social media use has been shown to influence mental and physical health, foster community connections, and influence patient-caregiver dynamics. However, significant concerns remain regarding the potential risk of exposure to misinformation and stigma as a result of self-disclosure. The current project aims to explore the underlying motivations and potential impact of self-disclosure on social media. METHOD: We performed a content and thematic analysis of public social media posts obtained from Facebook and Reddit. A total of 22,101 posts related to self-disclosure were retrieved from 36 Facebook groups and pages over a six-month period. Of these, a sample of 1,621 posts were selected for final coding and thematic analysis. Additionally, a total of 1,032 posts were collected from Reddit, with a final sample of 779 posts retained after applying exclusion criteria. To gain deeper insights into exchanges surrounding dementia care, comments and replies to 153 Facebook posts and 187 Reddit posts were also analyzed. RESULT: Preliminary findings indicate advice- and information-seeking as the predominant motivations for self-disclosure, with users frequently requesting personal experiences and insights into the complex symptomology. A response analysis revealed that the majority of Facebook users either provided information, including advice, or related to the original poster's circumstances. Initial thematic analysis identified key themes, including complex and iterative grief, challenges associated with end-of-life decisions, and the compounding nature of functional decline. CONCLUSION: The insights uncovered in this work will guide the development of an evidence-based resource to support decision-making around social media use in dementia.
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How this classification was reachedexpand
Full frame machine prediction
Teacher imitationNot calibrated prevalence, not ground truth. Human validation pending. The Gemma side is a direct model label for every work in the frame, read from the title-only record. The Codex side is a classifier learned from the 10,348 direct Codex labels and calibrated to design-weighted sample rates; fields without enough sample support carry no Codex call. Candidate is the union of the two sides; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels.
Distilled classifier scores by category (both heads)
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.007 | 0.029 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.000 | 0.000 |
| Bibliometrics | 0.003 | 0.002 |
| Science and technology studies | 0.003 | 0.002 |
| Scholarly communication | 0.002 | 0.004 |
| Open science | 0.001 | 0.003 |
| Research integrity | 0.001 | 0.001 |
| Insufficient payload (model declined to judge) | 0.001 | 0.000 |
Machine scores (provisional)
The two teacher heads of the student model, read on this work. A score orders the frame for review; it never asserts a category, and the validation status ships verbatim with every row.
Baseline scores from an immature model (maturity gate not passed, 7 training rounds). Scores rank; they never assert a category.
score_only:v0-immature-baseline · verbatim from the scoring run: score_only means the number may rank works, and no category label ships from itClassification
machine, unvalidatedMachine predicted; a candidate call from one source (direct Gemma or distilled Codex), not a consensus.
How this classification was reached, model by model and score by score, is at the end of the page under "How this classification was reached".