JMIR Publications

ABSTRACT

Background:

Millions of caregivers of people living with Alzheimer’s Disease (AD) and Related Dementias (AD/ADRD) provide more than 17 billion hours of unpaid care annually in the United States. These caregivers experience high levels of stress and burden related to the challenges associated with providing care. Social media is an emerging space for individuals to seek various forms of support.

Objective:

This study sought to explore the primary topics of conversation on the social media site Reddit related to AD/ADRD. We then sought to explore these topics in depth, specifically examining elements of social support and behavioral symptomology discussed by users.

Methods:

We first generated an unsupervised topic model from 6,563 posts made to two dementia-specific subreddit forums (i.e., r/Alzheimer’s and r/dementia). We then conducted a manual qualitative content analysis of a random subset of this data to further explore salient themes in the corpus.

Results:

The unsupervised topic model generated 26 distinct topics, largely related to caregiver burden, anxiety, and support seeking, as well as a cluster of individual behavioral symptom-related topics. Qualitative review provided added context, wherein users sought emotional and informational support for many aspects of the care experience, including seeking assistance in making key care-related decisions. Qualitative review identified 14 behavioral symptoms in the corpus, which presented differently across care recipients.

Conclusions:

Reddit users seek many different forms of support, including emotional and specific informational support from others online. These users expressed a variety of concerns, challenges, and behavioral symptoms to manage as part of the care experience. The unique, (i.e., anonymous, moderated) nature of the forum allowed for a safe space to express emotions free from documented caregiver stigma. Additional support structures are needed to assist caregivers of people living with AD/ADRD.