Kaliappan Sidharth, Liu Chunyu, Jain Yoshee, Karkar Ravi, Saha Koustuv
Manning College of Information & Computer Sciences, University of Massachusetts Amherst, Amherst, MA, United States.
School of Information Sciences, University of Illinois Urbana-Champaign, Champaign, United States.
JMIR Aging. 2025 May 5;8:e68890. doi: 10.2196/68890.
Alzheimer 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.
This 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.
We 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.
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 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.
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.
阿尔茨海默病（AD）是痴呆症的主要类型，需要全面的理解和干预策略。在美国，超过600万人受到影响，AD及相关痴呆症（AD/ADRD）的患病率给公共卫生带来了日益严峻的挑战。然而，患有AD/ADRD的个人及其照顾者经常表达被边缘化的感受，描述互动中存在患者幼稚化的认知以及缺乏尊重的情况。
本研究旨在解决两个关键研究问题（RQ）。对于研究问题1，我们调查了专注于AD/ADRD的在线社交社区参与者所表达的需求和担忧，特别是在两个平台——Reddit的r/Alzheimers和ALZConnected上。对于研究问题2，我们研究了与这些需求和担忧相对应的社会支持的患病率和分布情况，以及这些需求与所获得支持之间的关联。
我们收集了2014年7月至2023年11月期间r/Alzheimers子版块的13429篇帖子和评论，以及2020年12月（该社区最早的帖子）至2023年11月期间ALZConnected的90113篇帖子和评论。我们使用潜在狄利克雷分配（LDA）进行主题建模，随后进行标注以确定讨论的主要主题。我们使用迁移学习分类器来识别讨论中评论（或回复）中情感支持（ES）和信息支持（IS）的出现情况。我们建立回归模型来研究各种主题如何与所获得的支持类型相关联。
我们的分析揭示了一系列反映社区成员对受AD/ADRD影响个体的不同需求和担忧的主题。这些主题涵盖了在线社区内的主要讨论内容：记忆护理、护理与照顾、感激与认可，以及法律和财务考量。我们的研究结果表明，与情感支持相比，信息支持的患病率更高。回归模型显示，情感支持主要出现在与护理和照顾相关的帖子中，而信息支持主要出现在与医疗状况和诊断、法律和财务以及家庭护理相关的帖子中。
本研究表明，致力于AD/ADRD支持的在线社区会就广泛的主题展开讨论，如记忆护理、护理、照顾以及法律和财务挑战。研究结果揭示了家庭中管理AD/ADRD的个人所面临的关键痛点和担忧，展示了他们如何利用在线平台获取指导和支持。这些见解强调了需要有针对性的机构和社会干预措施，以满足AD/ADRD患者、照顾者及其他家庭成员的特定需求。
