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Online Communities as a Support System for Alzheimer’s and Dementia Care: Large-Scale Exploratory Study
ABSTRACT
Background:
Alzheimer’s Disease (AD) is the leading type of dementia, demanding comprehensive understanding and intervention strategies. In the United States, where over 6 million people are impacted, the prevalence of AD and related dementias (ADRD) presents a growing public health challenge. However, individuals living with AD/ADRD and their caregivers frequently express feelings of marginalization, describing interactions characterized by perceptions of patient infantilization and a lack of respect.
Objective:
Our study aimed to investigate the needs and concerns expressed by participants in social communities focused on Alzheimer’s Disease and Related Dementias (AD/ADRD), specifically on the platforms Reddit’s r/Alzheimers and ALZConnected. We also examined the nature of the social support they offer and seek within these communities.
Methods:
We collected approximately 14,000 posts and comments from the r/Alzheimers subreddit spanning July 2014 to November 2023, and around 90,000 posts and comments from ALZConnected between December 2020 (the community’s earliest post) and November 2023. We conducted topic modeling using Latent Dirichlet Allocation, followed by qualitative interpretation to identify the major topical themes of discussions. We employed transfer learning classifiers to identify the occurrences of emotional and informational support in the comments (or responses) in the discussions. We built regression models to examine how various topical themes are associated with the kinds of support received.
Results:
Our analysis revealed a diverse range of topics, reflecting community members’ varying needs and concerns of individuals affected by AD/ADRD. These themes encapsulate the primary discussions within the online communities: memory care, nursing and caregiving, gratitude and acknowledgment, and legal and financial considerations. Our findings indicated a higher prevalence of informational support compared to emotional support. Regression models revealed that emotional support primarily occurs in posts relating to nursing and caring, and informational support primarily occurs in posts concerning the medical condition and diagnosis, legal and financial, and caregiving at home.
Conclusions:
This study reveals that online communities dedicated to AD/ADRD support engage in discussions on a wide range of topics, such as memory care, nursing, caregiving, and legal and financial challenges. The findings shed light on the key pain points and concerns faced by individuals managing AD/ADRD in their households, revealing how they leverage online platforms for guidance and support. These insights underscore the need for targeted institutional and social interventions to address the specific needs of AD/ADRD patients, caregivers, and other family members.
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Copyright
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