Sentiment Dynamics Among Informal Caregivers in Online Alzheimer’s Communities: A Systematic Analysis of Emotional Support and Interaction Patterns (Preprint)

Abstract

Alzheimer's disease and related dementias (ADRD) is a growing global health challenge. ADRD places significant physical, emotional, and financial burdens on informal caregivers and negatively affects their well-being, particularly their mental well-being. Online social media platforms have emerged as valuable sources of peer support for these caregivers. However, there has been limited investigation into how online peer support might influence their mental well-being.

We examine the dynamics of sentiment, one major indicator of mental well-being, among ADRD informal caregivers in online communities, specifically how their sentiment changes as they participate in caregiving experience discussions within two ADRD online communities.

We collected data from two large online ADRD caregiving communities, ALZConnected and TalkingPoint, covering November 2011 to August 2022, and March 2003 to November 2022, respectively. Using the Valence Aware Dictionary for Sentiment Reasoning (VADER) and Linguistic Inquiry and Word Count (LIWC), we calculated the sentiment scores for each post and evaluated how the initial sentiment of a topic initiator evolves within a discussion thread. Structured topic modeling and regression analysis were used to identify the primary topics that were 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 online communities by plotting linear interpolation lines of the sentiment values of each individual user.

The ALZConnected dataset was composed of 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 positive 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 across both communities. Using structured topic modeling, we cataloged a diverse range of topics that included both emotional aspects, such as family emotions (5.4%), and practical concerns, like diagnosis and treatment (6.9%), and everyday care practices (4.5%). We observed that sentiment scores were positively aligned with discussions about family and daily routines life (coefficient is 3.53, p<0.0001), while topics related to illness (coefficient is -1.37, p<0.0001) and caregiving facilities (coefficient is -1.98, p<0.0001) tended to correlate with lower sentiment scores. This This evidence highlights the significant impact that both the time of participation and the posting content have on the sentiment changes of caregivers.

Our study identifies sentiment changes among informal ADRD caregivers through their interactions in two extensive online 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 findings further highlight the value of online peer support and its potential to enhance emotional well-being of informal ADRD caregivers.