Mental health care needs of caregivers of people with Alzheimer’s disease from online forum analysis

Jiyeong Kim, Zhuo Ran Cai, Michael L. Chen, Shawheen J. Rezaei, Sonia Onyeka, Carolyn I. Rodriguez, Tina Hernandez-Boussard, Vladimir Filkov, Rachel A. Whitmer, Eleni Linos, Yong K. Choi
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Abstract

Informal caregivers of people with Alzheimer’s disease and related dementias (ADRD) are at risk of poor mental health. This study aimed to investigate the feasibility and validity of studying caregivers’ mental stressors using online caregiving forum data (March 2018–February 2022) and natural language processing and machine learning (NLP/ML). NLP/ML topic modeling generated eight prominent topics, which we compared with qualitatively defined themes and the existing caregiving framework to assess validity. Among a total of 60,182 posts, 5848 were mental distress-related; for the ADRD patients (symptoms, medication, relocation, care duty share, diagnosis, conversation strategy) and the caregivers (caregiving burden and support). While we observed novel topics from NLP/ML-defined topics, mostly those were aligned with the existing framework. For feasibility assessment, qualitative title screening was done. The findings shed new light on the potential of NLP/ML text analysis of the online forum for informal caregivers to prepare tailored support for this vulnerable population.

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从网上论坛分析老年痴呆症患者照顾者的心理保健需求。
阿尔茨海默病及相关痴呆症(ADRD)患者的非正规护理者面临着心理健康状况不佳的风险。本研究旨在利用在线照护论坛数据(2018 年 3 月至 2022 年 2 月)以及自然语言处理和机器学习(NLP/ML)研究照护者的精神压力源的可行性和有效性。NLP/ML 主题建模生成了八个突出主题,我们将其与定性定义的主题和现有的护理框架进行了比较,以评估其有效性。在总共 60,182 个帖子中,有 5848 个帖子与精神痛苦有关;这些帖子分别针对 ADRD 患者(症状、用药、搬迁、护理责任分担、诊断、谈话策略)和护理人员(护理负担和支持)。虽然我们从 NLP/ML 定义的主题中发现了新颖的主题,但这些主题大多与现有框架一致。为了评估可行性,我们进行了定性标题筛选。研究结果揭示了对非正式护理人员在线论坛进行 NLP/ML 文本分析的潜力,从而为这一弱势群体提供量身定制的支持。
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