JMIR Publications

ABSTRACT

Background:

As the social media (SM) support groups provide a communication platform for caregivers to share experiences, examples of effective and ineffective care, asking questions, recommending new approaches, or venting their needs, there is still little documented on how SM can help to obtain a true picture of the caregiver burden according to activities of daily living (ADLs).

Objective:

The study aims to identify the real-life practice of family caregivers looking after people with Alzheimer’s disease (AD). The image of caregivers’ actual practice is determined on the basis of their experience, needs, emotions, or examples of the behavior of people with AD found on social networks.

Methods:

We collected a sample of 1603 posts relevant to basic activities of daily living (ADLs) which were published in two Facebook support groups related to AD. In the next step, conversation topics were identified separately for each of the six basic categories of ADLs. This was done using the topic extractor based on the simple parallel threaded implementation of Latent Dirichlet allocation with sparse LDA sampling scheme and data structure.

Results:

From the quantitative point, the study provides knowledge about the proportions of members’ interest in the individual areas of ADLs. From the qualitative point, machine learning automatically detected five discussion topics for each activity. At the same time, for each of the topics, real-life examples from the day-to-day experience of family caregivers are given. In terms of the members’ interests, statistically significant differences were found between the drinking and feeding activity and three other daily activities. Moreover, a qualitative analysis showed several causal links between the individual topics discussed within the areas of ADLs.

Conclusions:

The acquired knowledge can help further research focus on the most problematic areas relevant for people with AD in order to increase their quality of life and at the same time reduce the caregiver burden. The study expands the knowledge of the demands posed by the individual caregiver activities, specifically in the context of activity-based costing or time-based activity costing. At the same time, it can serve as a basis for identifying the needs of caregivers in the field of innovative development or the implementation of online counseling on social networks. Clinical Trial: Not applicable.