AccScience Publishing / AIH / Online First / DOI: 10.36922/aih.3075
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ORIGINAL RESEARCH ARTICLE

Experiences of Alzheimer’s disease and related dementia family caregivers on Reddit communities: A topic modeling and sentiment analysis

Yulin Hswen1,2 ,  Jiangmei Xiong3 ,  Margaret Hurley4 ,  Thu T. Nguyen5*
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1 Department of Epidemiology and Biostatistics, University of California San Francisco, San Francisco, California, United States of America
2 Bakar Computational Health Sciences Institute, University of California San Francisco, San Francisco, California, United States of America
3 Department of Biostatistics, Vanderbilt University Medical Center, Nashville, Tennessee, United States of America
4 John Snow Inc, Washington, D.C., United States of America
5 Department of Epidemiology and Biostatistics, College Park, University of Maryland School of Public Health, District of Columbia, United States of America
AIH 2024, 1(3), 127–135; https://doi.org/10.36922/aih.3075
Submitted: 4 March 2024 | Accepted: 7 June 2024 | Published: 30 July 2024
© 2024 by the Author(s). This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution 4.0 International License ( https://creativecommons.org/licenses/by/4.0/ )
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Abstract

Alzheimer’s disease and related dementias (ADRD) are a spectrum of disorders characterized by cognitive decline, which pose significant challenges for both affected individuals and their caregivers. Previous literature has focused on patient family surveys which do not always capture the breadth of authentic experiences of the caregiver. Online social media platforms provide a space for individuals to share their experiences and obtain advice toward caring for those with ADRD. This study leverages Reddit, a platform frequented by caregivers seeking advice for caring for a family member with advice for ADRD. To identify the topics of discussion or advice that most caregivers seek and sought after, we employed structured topic modeling techniques such as BERTopic to analyze the content of these posts and use an intertopic distance map to discern the variation in themes across different Reddit categories. In addition, we analyze the sentiment of the Reddit postings using Valence Aware Dictionary and Sentiment Reasoner to deduce the degree of negative, positive, and neutral sentiment of the discussion posts. Our findings reveal that the topics that caregivers most frequently discuss and seek advice for were related to caregiver stories, community support, and concerns ADRD. Specifically, we aimed to reproduce an organic Reddit search of caregiving of abuse on family member, financial struggles, symptoms of hallucinations, and repetition in ADRD family members. These results underscore the importance of online communities for gaining a comprehensive understanding of the multifaceted experiences and challenges faced by ADRD caregivers.

Keywords
Alzheimer’s disease and related dementias
Alzheimer’s
Dementia
Caregiver
Reddit
Social media
Natural language processing
Sentiment analysis
Topic analysis
BERTopic
Funding
Research reported in this publication was supported by the National Institute on Minority Health and Health Disparities (R00MD012615 [TTN], R01MD015716 [TTN]). The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.
Conflict of interest
The authors declare that they have no competing interests.
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Artificial Intelligence in Health, Electronic ISSN: 3029-2387 Print ISSN: 3041-0894, Published by AccScience Publishing
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