Hswen Yulin, Xiong Jiangmei, Hurley Margaret, Nguyen Thu T
Department of Epidemiology and Biostatistics, University of California San Francisco, San Francisco, California, United States of America.
Bakar Computational Health Sciences Institute, University of California San Francisco, San Francisco, California, United States of America.
Artif Intell Health. 2024;1(3):127-135. doi: 10.36922/aih.3075. Epub 2024 Jul 30.
Alzheimer's disease and related dementias (ADRD) are a spectrum of disorders characterized by cognitive decline, which pose significant challenges for both affected individuals and their caregivers. Previous literature has focused on patient family surveys which do not always capture the breadth of authentic experiences of the caregiver. Online social media platforms provide a space for individuals to share their experiences and obtain advice toward caring for those with ADRD. This study leverages Reddit, a platform frequented by caregivers seeking advice for caring for a family member with advice for ADRD. To identify the topics of discussion or advice that most caregivers seek and sought after, we employed structured topic modeling techniques such as BERTopic to analyze the content of these posts and use an intertopic distance map to discern the variation in themes across different Reddit categories. In addition, we analyze the sentiment of the Reddit postings using Valence Aware Dictionary and Sentiment Reasoner to deduce the degree of negative, positive, and neutral sentiment of the discussion posts. Our findings reveal that the topics that caregivers most frequently discuss and seek advice for were related to caregiver stories, community support, and concerns ADRD. Specifically, we aimed to reproduce an organic Reddit search of caregiving of abuse on family member, financial struggles, symptoms of hallucinations, and repetition in ADRD family members. These results underscore the importance of online communities for gaining a comprehensive understanding of the multifaceted experiences and challenges faced by ADRD caregivers.
阿尔茨海默病及相关痴呆症(ADRD)是一系列以认知能力下降为特征的疾病,给患者及其护理人员都带来了重大挑战。以往的文献主要集中在患者家庭调查上,而这些调查并不总能全面反映护理人员的真实经历。在线社交媒体平台为个人提供了一个分享经验和获取照顾ADRD患者建议的空间。本研究利用Reddit平台,这是一个护理人员经常光顾的平台,他们在这里寻求照顾患有ADRD的家庭成员的建议。为了确定大多数护理人员寻求和关注的讨论主题或建议,我们采用了结构化主题建模技术,如BERTopic,来分析这些帖子的内容,并使用主题间距离图来辨别不同Reddit类别中主题的变化。此外,我们使用情感感知词典和情感推理器分析Reddit帖子的情感,以推断讨论帖子的负面、正面和中性情感程度。我们的研究结果表明,护理人员最常讨论和寻求建议的主题与护理人员的故事、社区支持以及对ADRD的担忧有关。具体来说,我们旨在重现Reddit上关于虐待家庭成员的护理、经济困难、幻觉症状以及ADRD家庭成员的重复行为的自然搜索。这些结果强调了在线社区对于全面了解ADRD护理人员所面临的多方面经历和挑战的重要性。
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