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

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.

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

“…Exclusivity refers to the uniqueness of the most frequent words in a topic, while semantic coherence [27] quantifies the co-occurrence of words in a topic in a general context or all the posts. We assess STM for topic numbers ranging from 5 to 30 and select the optimal number Κ of topics for further analysis [14].…”

“…Online social media platforms have emerged as a valuable, convenient resource for caregivers to gain informational and emotional support that may not be easily obtained in traditional offline face-to-face interactions [14,15]. A recent survey indicated that online communities could provide informal caregivers with a sense of understanding, empowerment, support, and belongingness, thus reducing social isolation and improving the emotional wellbeing of these caregivers [16].…”

Perceptions and Utilization of Online Peer Support Among Informal Dementia Caregivers: Survey Study

“…Based on internet utilization, informal dementia caregivers can be categorized as (1) non-internet caregivers, who never use the internet; (2) non-online community caregivers, who use the internet but do not participate in online communities; and (3) online community caregivers, who both use the internet and participate in online communities. Current social media-based dementia caregiving research primarily focuses on online community caregivers [25][26][27]. Although improving the online experiences of these caregivers is important [28], understanding how non-online community caregivers perceive the value of online peer support is significant as well.…”

Examining Online Behaviors of Adult-Child and Spousal Caregivers for People Living With Alzheimer Disease or Related Dementias: Comparative Study in an Open Online Community

“…The integration of the internet into daily life has enabled caregivers to increasingly discuss health-related topics on online platforms [ 20 ], including Twitter [ 24 ], Facebook [ 25 ], and other online communities [ 26 ]. In recent research, higher emotional stress and financial hardship of caregivers were found to be the most significant emerging factors associated with increased health-related internet use [ 27 ].…”

“…Various machine learning algorithms have been developed to extract relevant information from massive, noisy online data to facilitate biomedical research [ 36 ], including, but not limited to, predicting mental health status [ 37 ], disseminating study information during the COVID-19 pandemic [ 38 ], and learning the needs of patients with ovarian cancer and their caregivers [ 39 ]. However, most studies in the ADRD caregiving field have either identified online ADRD caregiving discussions [ 26 ] or summarized caregiving challenges [ 35 ]. Few studies have differentiated caregivers’ relationships with persons living with dementia.…”