“Rough Day … Need a Hug”: Learning Challenges and Experiences of the Alzheimer’s Disease and Related Dementia Caregivers on Reddit

Authors

  • Congning Ni Department of Computer Science, Vanderbilt University, Nashville, TN
  • Bradley Malin Department of Computer Science, Vanderbilt University, Nashville, TN Department of Biomedical Informatics, Vanderbilt University Medical Center, Nashville, TN Department of Biostatistics, Vanderbilt University Medical Center, Nashville, TN
  • Lijun Song Department of Sociology, Vanderbilt University, Nashville, TN
  • Angela Jefferson Department of Neurology, Vanderbilt University Medical Center, Nashville, TN Vanderbilt Memory and Alzheimer's Center, Vanderbilt University Medical Center, Nashville, TN
  • Patricia Commiskey Department of Neurology, Vanderbilt University Medical Center, Nashville, TN
  • Zhijun Yin Department of Computer Science, Vanderbilt University, Nashville, TN Department of Biomedical Informatics, Vanderbilt University Medical Center, Nashville, TN

Keywords:

Text categorization; topic recognition; demographic/gender/age identification, Qualitative and quantitative studies of social media, Social innovation and effecting change through social media

Abstract

Alzheimer’s disease and related dementia (ADRD) is a collection of disorders involving mental deterioration, which is often quite distressing for the individuals and those caring for them. Online social media platforms have become popular environments for people to share their ADRD caring challenges and experiences. Despite encouraging findings in the literature regarding online support for ADRD caregivers, studies to date have focused only on a single online community about ADRD, which leads to an incomplete picture of the needs of ADRD caregivers. Additionally, the large volume of data from online communities makes it challenging for both researchers and caregivers to efficiently discover discussions about ADRD care. In this paper, we focus on Reddit, an online rating and discussion platform that consists of many communities, or subreddits, and aim to analyze the topic difference regarding ADRD care between ADRD and non-ADRD subreddits. To do so, we first develop a two-stage classification framework to extract posts about ADRD care from the entire Reddit. Then, we apply structured topic modeling to investigate what has been discussed on ADRD care and how such discussions are prevalent in different types of subreddits. Our results show that non-ADRD subreddits contribute 68.5% of submissions of ADRD care, more than twice as many as ADRD subreddits. Moreover, non-ADRD subreddits are more likely to disclose legal and financial issues, negative relationships and mental health, while ADRD subreddits are more likely to talk about memory loss, sleeping and diet issues, the disease and clinical visits. Our findings suggest that research in this area should look into discussions beyond ADRD communities to gain a comprehensive understanding of ADRD caring experiences and challenges.

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Published

2022-05-31

How to Cite

Ni, C., Malin, B., Song, L., Jefferson, A., Commiskey, P., & Yin, Z. (2022). “Rough Day … Need a Hug”: Learning Challenges and Experiences of the Alzheimer’s Disease and Related Dementia Caregivers on Reddit. Proceedings of the International AAAI Conference on Web and Social Media, 16(1), 711-722. Retrieved from https://ojs.aaai.org/index.php/ICWSM/article/view/19328