Sentiment Dynamics Among Informal Caregivers in Web-Based Alzheimer Communities: Systematic Analysis of Emotional Support and Interaction Patterns.

Abstract

Background: Alzheimer disease and related dementias (ADRD) are a growing global health challenge. ADRD place significant physical, emotional, and financial burdens on informal caregivers and negatively affects their well-being. Web-based social media platforms have emerged as valuable sources of peer support for these caregivers. However, there has been limited investigation into how web-based peer support might influence their mental well-being.

Objective: This study aims to examine the dynamics of sentiment scores, a major indicator of mental well-being, among informal ADRD caregivers, specifically how their sentiment changes as they participate in caregiving experience discussions within 2 ADRD web-based communities.

Methods: We collected data from 2 large web-based ADRD caregiving communities, ALZConnected (from November 2011 to August 2022) and TalkingPoint (from March 2003 to November 2022). Using the Valence Aware Dictionary for Sentiment Reasoning and Linguistic Inquiry and Word Count, we calculated sentiment scores for each post and evaluated how the initial sentiment score of a topic initiator evolves within a discussion thread. Structured topic modeling and regression analysis were used to identify the primary topics consistently associated with sentiment changes within these threads. We investigated longitudinal sentiment trends to identify patterns of sentimental stability or enhancement due to prolonged engagement in web-based communities by plotting linear interpolation lines of the sentiment values of each individual user.

Results: The ALZConnected dataset comprised 532,992 posts, consisting of 57,641 topic threads and 475,351 comments. The TalkingPoint dataset was composed of 846,344 posts, consisting of 81,068 topic threads and 765,276 comments. Our research revealed that topic initiators experienced a notable increase in sentiment as they engaged in subsequent discussions within their threads, with a significant uptick in positivity in the short term. This phenomenon is part of a broader trend of steadily rising positive sentiment among ADRD caregivers. Using structured topic modeling, we cataloged a diverse range of topics that included both emotional aspects, such as family emotions, and practical concerns, such as diagnosis and treatment and everyday care practices. We observed that sentiment scores were positively aligned with discussions about family and daily routines life (coefficient=3.53; P<.001), while topics related to illness (coefficient=-1.37; P<.001) and caregiving facilities (coefficient=-1.98; P<.001) tended to correlate with lower sentiment scores. This evidence highlights the significant impact that both the time of participation and the posting content have on the sentiment changes of caregivers.

Conclusions: This study identifies sentiment changes among informal ADRD caregivers through their interactions in 2 extensive web-based communities. These findings emphasize the importance of early emotional support within a topic thread and demonstrate a predominantly positive sentiment in these communities over time. These further highlight the value of web-based peer support and its potential to enhance the emotional well-being of informal ADRD caregivers.