Online Communities as a Support System for Alzheimer Disease and Dementia Care: Large-Scale Exploratory Study
BackgroundAlzheimer 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 (AD/ADRD) presents a growing public...
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| Format: | Article |
| Language: | English |
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JMIR Publications
2025-05-01
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| Series: | JMIR Aging |
| Online Access: | https://aging.jmir.org/2025/1/e68890 |
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| author | Sidharth Kaliappan Chunyu Liu Yoshee Jain Ravi Karkar Koustuv Saha |
| author_facet | Sidharth Kaliappan Chunyu Liu Yoshee Jain Ravi Karkar Koustuv Saha |
| author_sort | Sidharth Kaliappan |
| collection | DOAJ |
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BackgroundAlzheimer 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 (AD/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.
ObjectiveThis study aimed to address 2 key research questions (RQs). For RQ1, we investigated the needs and concerns expressed by participants in online social communities focused on AD/ADRD, specifically on 2 platforms–Reddit’s r/Alzheimers and ALZConnected. For RQ2, we examined the prevalence and distribution of social support corresponding to these needs and concerns, and the association between these needs and received support.
MethodsWe collected 13,429 posts and comments from the r/Alzheimers subreddit spanning July 2014 to November 2023, and 90,113 posts and comments from ALZConnected between December 2020 (the community’s earliest post) and November 2023. We conducted topic modeling using latent Dirichlet allocation (LDA), followed by labeling to identify the major topical themes of discussions. We used transfer learning classifiers to identify the occurrences of emotional support (ES) and informational support (IS) 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.
ResultsOur 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 IS compared to ES. Regression models revealed that ES primarily occurs in posts relating to nursing and caring, and IS primarily occurs in posts concerning medical conditions and diagnosis, legal and financial, and caregiving at home.
ConclusionsThis 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. |
| format | Article |
| id | doaj-art-57b6e710cd684786bf3ff07052bdcf24 |
| institution | Kabale University |
| issn | 2561-7605 |
| language | English |
| publishDate | 2025-05-01 |
| publisher | JMIR Publications |
| record_format | Article |
| series | JMIR Aging |
| spelling | doaj-art-57b6e710cd684786bf3ff07052bdcf242025-08-20T03:48:43ZengJMIR PublicationsJMIR Aging2561-76052025-05-018e6889010.2196/68890Online Communities as a Support System for Alzheimer Disease and Dementia Care: Large-Scale Exploratory StudySidharth Kaliappanhttps://orcid.org/0009-0003-0334-2196Chunyu Liuhttps://orcid.org/0009-0007-4026-3314Yoshee Jainhttps://orcid.org/0009-0005-6291-5438Ravi Karkarhttps://orcid.org/0000-0003-1467-4439Koustuv Sahahttps://orcid.org/0000-0002-8872-2934 BackgroundAlzheimer 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 (AD/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. ObjectiveThis study aimed to address 2 key research questions (RQs). For RQ1, we investigated the needs and concerns expressed by participants in online social communities focused on AD/ADRD, specifically on 2 platforms–Reddit’s r/Alzheimers and ALZConnected. For RQ2, we examined the prevalence and distribution of social support corresponding to these needs and concerns, and the association between these needs and received support. MethodsWe collected 13,429 posts and comments from the r/Alzheimers subreddit spanning July 2014 to November 2023, and 90,113 posts and comments from ALZConnected between December 2020 (the community’s earliest post) and November 2023. We conducted topic modeling using latent Dirichlet allocation (LDA), followed by labeling to identify the major topical themes of discussions. We used transfer learning classifiers to identify the occurrences of emotional support (ES) and informational support (IS) 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. ResultsOur 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 IS compared to ES. Regression models revealed that ES primarily occurs in posts relating to nursing and caring, and IS primarily occurs in posts concerning medical conditions and diagnosis, legal and financial, and caregiving at home. ConclusionsThis 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.https://aging.jmir.org/2025/1/e68890 |
| spellingShingle | Sidharth Kaliappan Chunyu Liu Yoshee Jain Ravi Karkar Koustuv Saha Online Communities as a Support System for Alzheimer Disease and Dementia Care: Large-Scale Exploratory Study JMIR Aging |
| title | Online Communities as a Support System for Alzheimer Disease and Dementia Care: Large-Scale Exploratory Study |
| title_full | Online Communities as a Support System for Alzheimer Disease and Dementia Care: Large-Scale Exploratory Study |
| title_fullStr | Online Communities as a Support System for Alzheimer Disease and Dementia Care: Large-Scale Exploratory Study |
| title_full_unstemmed | Online Communities as a Support System for Alzheimer Disease and Dementia Care: Large-Scale Exploratory Study |
| title_short | Online Communities as a Support System for Alzheimer Disease and Dementia Care: Large-Scale Exploratory Study |
| title_sort | online communities as a support system for alzheimer disease and dementia care large scale exploratory study |
| url | https://aging.jmir.org/2025/1/e68890 |
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