JMIR Publications

ABSTRACT

Background:

Global aging places significant demands on informal caregivers providing care for older adults with health and functioning needs. Challenges in informal caregiving, however, are context-specific, often shaped by the health status of the care recipient. Faced with multiple challenges, informal caregivers of older adults often turn to emerging Online Support Communities (OSCs) for information, support, and connection with others in similar situations. While scholarly attention has focused on experiences expressed by informal caregivers in OSCs, how these struggles and feelings vary across different health contexts remains understudied.

Objective:

This study examines the challenges discussed by informal caregivers of general older adults and those of Alzheimer's Disease and related dementia (ADRD) patients and their emotional expression in OSCs. We aim to understand the commonalities and differences in topics, sentiments, and emotions expressed by these two informal caregiver populations in their communication in Reddit subforums.

Methods:

We utilized the Reddit API to retrieve top-level posts from six communities ("subreddits") related to older adult caregiving (r/AgingParent, r/eldercare, and r/elderlycare) and dementia caregiving (r/Alzheimers, r/dementia, and r/DementiaHelp). A total of 3,028 posts were collected, with 1,552 from general elderly caregiving subreddits and 1,476 from dementia subreddits. We conducted topic modeling, sentiment analysis, and emotion analysis on the collected posts to extract topics, sentiments, and emotions expressed by caregivers. Additionally, we analyzed the correlation between the obtained topics and emotions.

Results:

18 key topics discussing a variety of different matters were identified through topic modeling. We observed differences in the topics discussed by informal caregivers of older adults and those caring for individuals with ADRD. Posts from elderly care-related subreddits tended to focus on practical caregiving issues and seeking advice, whereas posts from dementia care-related subreddits were more centered around disease- and symptom-related topics and expressing feelings. The feelings expressed in the posts were predominantly negative in both elderly care-related and dementia care-related subreddits. We also identified that specific negative emotions were correlated with particular topics. Notably, the negative emotions of Anger, Fear, and Sadness were most strongly correlated with the topic of the duration of medical care. Anger, in particular, exhibited a strong correlation with posts discussing finances. Interestingly, the topics of dementia and Alzheimer’s correlated negatively with Anger but positively with Fear and Sadness.

Conclusions:

Through topic modeling, sentiment analysis, and correlation analysis, this study highlights the different challenges faced by informal caregivers of older adults and those suffering from ADRD based on their unique context and emphasizes the links between their challenges and emotions. By identifying the challenges and emotions expressed in OSCs, we offer valuable insights for health practitioners and policymakers to provide more targeted support interventions to meet the needs of informal caregivers.