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

Abstract

Background: Alzheimer disease or related dementias (ADRD) are severe neurological disorders that impair the thinking and memory skills of older adults. Most persons living with dementia receive care at home from their family members or other unpaid informal caregivers; this results in significant mental, physical, and financial challenges for these caregivers. To combat these challenges, many informal ADRD caregivers seek social support in online environments. Although research examining online caregiving discussions is growing, few investigations have distinguished caregivers according to their kin relationships with persons living with dementias. Various studies have suggested that caregivers in different relationships experience distinct caregiving challenges and support needs.

Objective: This study aims to examine and compare the online behaviors of adult-child and spousal caregivers, the 2 largest groups of informal ADRD caregivers, in an open online community.

Methods: We collected posts from ALZConnected, an online community managed by the Alzheimer's Association. To gain insights into online behaviors, we first applied structural topic modeling to identify topics and topic prevalence between adult-child and spousal caregivers. Next, we applied VADER (Valence Aware Dictionary for Sentiment Reasoning) and LIWC (Linguistic Inquiry and Word Count) to evaluate sentiment changes in the online posts over time for both types of caregivers. We further built machine learning models to distinguish the posts of each caregiver type and evaluated them in terms of precision, recall, F₁-score, and area under the precision-recall curve. Finally, we applied the best prediction model to compare the temporal trend of relationship-predicting capacities in posts between the 2 types of caregivers.

Results: Our analysis showed that the number of posts from both types of caregivers followed a long-tailed distribution, indicating that most caregivers in this online community were infrequent users. In comparison with adult-child caregivers, spousal caregivers tended to be more active in the community, publishing more posts and engaging in discussions on a wider range of caregiving topics. Spousal caregivers also exhibited slower growth in positive emotional communication over time. The best machine learning model for predicting adult-child, spousal, or other caregivers achieved an area under the precision-recall curve of 81.3%. The subsequent trend analysis showed that it became more difficult to predict adult-child caregiver posts than spousal caregiver posts over time. This suggests that adult-child and spousal caregivers might gradually shift their discussions from questions that are more directly related to their own experiences and needs to questions that are more general and applicable to other types of caregivers.

Conclusions: Our findings suggest that it is important for researchers and community organizers to consider the heterogeneity of caregiving experiences and subsequent online behaviors among different types of caregivers when tailoring online peer support to meet the specific needs of each caregiver group.

Keywords: Alzheimer disease or related dementias; adult-child caregivers; informal caregivers; online community; sentiment analysis; spousal caregivers; text classification; topic modeling.

Figure 1

The number of posts (left) and the number of users (right) by relationship types in the 3 forums. The overall columns report the total number of posts (left) and unique users (right).

Figure 2

The distribution of comments and views for each topic thread. The x-axis is log transformed for visualization purposes (left); the scatterplot shows posting volume and active days among the caregivers (right). The density plots of both statistics are illustrated along the top and to the right.

Figure 3

A contrast can be seen in topic prevalence between adult-child and spousal caregivers (with 95% CIs). A positive (negative) value along the x-axis indicates that the topic is more prevalent among spousal (adult-child) caregivers.

Figure 4

Sentiment in online posts according to the Valence Aware Dictionary for Sentiment Reasoning (VADER) compound sentiment score for adult-child (left) and spousal (right) caregivers. To improve readability, all of 1 day’s scores are averaged into a single point.

Figure 5

Sentiment in online posts according to the Linguistic Inquiry and Word Count (LIWC) negative emotion score for adult-child (left) and spousal (right) caregivers. To improve readability, all of 1 day’s scores are averaged into a single point.

Figure 6

User-level (left) and post-level (right) model performance, in terms of area under the precision-recall curve (AUPRC), of different user bins in the test data set. Note that each user bin defines a post volume range. For example, a user bin of (1, 1) includes caregivers who only published 1 post, whereas a user bin of (100, ∞) includes caregivers who published >100 posts.

Figure 7

Confusion matrix of the M10 output for post-level (left) and user-level (right) predictions.

Figure 8

Prediction of caregiver relationship with persons living with dementia over time for adult children (left) and spouses (right).