Page 133 - AIH-1-3

Artificial Intelligence in Health

ORIGINAL RESEARCH ARTICLE
Experiences of Alzheimer’s disease and

related dementia family caregivers on Reddit
communities: A topic modeling and sentiment

analysis

Yulin Hswen 1,2 , Jiangmei Xiong 3 , Margaret Hurley , and Thu T. Nguyen *
4
5
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

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
*Corresponding author: family surveys which do not always capture the breadth of authentic experiences
Yulin Hswen
(yulin.hswen@ucsf.edu) 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
Citation: Hswen Y, Xiong J,
Hurley M, Nguyen TT. Experiences study leverages Reddit, a platform frequented by caregivers seeking advice for caring
of Alzheimer’s disease and related for a family member with advice for ADRD. To identify the topics of discussion or
dementia family caregivers on advice that most caregivers seek and sought after, we employed structured topic
Reddit communities: A topic
modeling and sentiment analysis. modeling techniques such as BERTopic to analyze the content of these posts and
Artif Intell Health. 2024;1(3):127-135. use an intertopic distance map to discern the variation in themes across different
doi: 10.36922/aih.3075 Reddit categories. In addition, we analyze the sentiment of the Reddit postings
Received: March 4, 2024 using Valence Aware Dictionary and Sentiment Reasoner to deduce the degree of
Accepted: June 7, 2024 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
Published Online: July 30, 2024 related to caregiver stories, community support, and concerns ADRD. Specifically,
Copyright: © 2024 Author(s). we aimed to reproduce an organic Reddit search of caregiving of abuse on family
This is an Open-Access article member, financial struggles, symptoms of hallucinations, and repetition in ADRD
distributed under the terms of the
Creative Commons Attribution family members. These results underscore the importance of online communities
License, permitting distribution, for gaining a comprehensive understanding of the multifaceted experiences and
and reproduction in any medium, challenges faced by ADRD caregivers.
provided the original work is
properly cited.
Publisher’s Note: AccScience Keywords: Alzheimer’s disease and related dementias; Alzheimer’s; Dementia; Caregiver;
Publishing remains neutral with Reddit; Social media; Natural language processing; Sentiment analysis; Topic analysis;
regard to jurisdictional claims in
published maps and institutional BERTopic
affiliations.

Volume 1 Issue 3 (2024) 127 doi: 10.36922/aih.3075