Ang Li Chang, Malhotra Rahul, Roy Chowdhury Anupama, Liew Tau Ming
Medicine Academic Clinical Programme, Singapore General Hospital, Singapore, Singapore.
Centre for Ageing Research and Education, Duke-NUS Medical School, Singapore, Singapore.
Sci Rep. 2025 Feb 12;15(1):5173. doi: 10.1038/s41598-024-82405-8.
With the advent of new media, more people are turning to social media to share thoughts and emotions related to personal life experiences. We examined salient concerns of dementia caregivers on Twitter pre- and post-pandemic, aiming to shed light on how to better support and engage dementia caregivers post-COVID-19 pandemic. English tweets related to "dementia" and "caregiver" were extracted between 1st January 2013 and 31st December 2022. A supervised deep learning model (Bidirectional Encoder Representations from Transformers, BERT) was trained to select tweets describing individual's experience related to dementia caregiving. An unsupervised deep learning approach (BERT-based topic modelling) was applied to identify topics from selected tweets, with each topic further grouped into themes manually using thematic analysis. A total of 44,527 tweets were analysed, and stratified using the emergence of COVID-19 pandemic as a threshold. Three themes were derived: challenges of caregiving in dementia, strategies to inspire caregivers, and dementia-related stigmatization. Over time, there is a rising trend of tweets relating to dementia caregiving. Post-pandemic, challenges of caregiving remained the top discussed topic; with a notable increase in tweets related to dementia-related stigmatization (p < 0.001), especially in North America and other continents (and less so in Europe). The findings uncover a worrying trend of growing dementia-related stigmatization among the caregivers, manifested by caregivers internalizing publicly-held stigma and projecting negative stereotypes externally as a means to devalue others. The challenges faced by caregivers also remained a significant concern, highlighting the need for continued support and resources for caregivers even post-pandemic.
随着新媒体的出现，越来越多的人转向社交媒体来分享与个人生活经历相关的想法和情感。我们研究了疫情前后痴呆症护理人员在推特上的突出关注点，旨在阐明如何在新冠疫情后更好地支持和参与痴呆症护理工作。在2013年1月1日至2022年12月31日期间提取了与“痴呆症”和“护理人员”相关的英文推文。训练了一个监督深度学习模型（来自变换器的双向编码器表示，BERT）来选择描述个人痴呆症护理经历的推文。应用无监督深度学习方法（基于BERT的主题建模）从选定的推文中识别主题，并使用主题分析将每个主题进一步手动分组为主题。总共分析了44527条推文，并以新冠疫情的出现为阈值进行分层。得出了三个主题：痴呆症护理的挑战、激励护理人员的策略以及与痴呆症相关的污名化。随着时间的推移，与痴呆症护理相关的推文呈上升趋势。疫情后，护理挑战仍然是讨论最多的话题；与痴呆症相关污名化的推文显著增加（p < 0.001），尤其是在北美和其他大陆（在欧洲则较少）。研究结果揭示了护理人员中与痴呆症相关污名化加剧的令人担忧的趋势，表现为护理人员将公众持有的污名内化，并向外投射负面刻板印象，以此贬低他人。护理人员面临的挑战也仍然是一个重大问题，凸显了即使在疫情后也需要持续为护理人员提供支持和资源。
