Social Media Use in Neurology: An Analysis of Alzheimer's Information on TikTok with Emphasis on Role of Healthcare Professionals

Abstract

Abstract Introduction Alzheimer's disease (AD) is the most common neurodegenerative cause of dementia. Social media has become a major source of information for patients and families. This study is the first to explore the quality, source, and content of AD videos on TikTok with emphasis on the role of healthcare professionals (HCPs). Methods A cross-sectional analysis was conducted on April 30, 2025, on AD videos on TikTok, including the data of usernames, video title, date of posting, and days since uploaded, video duration, video sources or uploader, content type, and engagement metrics. The DISCERN tool, a 15-item questionnaire for judging the quality of written consumer health information on treatment choices, was used to evaluate the quality of health information. Statistical analysis was conducted using R Statistical software. Results In total, 100 videos of the hashtag Alzheimer's were deemed eligible with median (interquartile range) engagement metrics: 4201.00 (300.25 to 66775.00) likes, 131.50 (13.00 to 1071.00) comments, and 438.00 (43.00 to 3414.00) shares. HCPs streamed only 33% of videos. There were videos about therapy suggestions (10%), disease descriptions (30%), and lifestyle (16%). The majority had poor (42%) and very poor (39%) quality. Videos by HCPs had more medical content with higher quality despite insignificant differences in engagement compared to non-HCP videos. Conclusion This study revealed an overall poor quality of public information on AD on TikTok, with a paucity of essential information, with minor contributions from HCPs. HCPs and organizations should provide creative, systematic plans to enhance public awareness on social media. Introduction Alzheimer's disease (AD) is the most common neurodegenerative cause of dementia and is responsible for significant individual morbidity and mortality, as well as economic impact on the healthcare system. Besides being the cause of 60-70% of dementia cases, cases are expected to increase up to threefold in the coming decades [1,2]. Thus, there is an increasing need to raise public awareness about AD to improve early diagnosis and proper management [3]. Social media has revolutionized methods of communication and interaction. Predictably, it has also transformed the learning and teaching methods. The younger generation has shifted from conventional educational resources to those found in the digital sphere [4,5]. Over the past ten years, digital education, a branch of technology-enhanced learning (TEL) that occurs solely online, has gained significant traction in the realm of teaching and learning. While digital education frequently incorporates social media, it also includes other supplementary digital tools such as podcasts, streaming videos, blogs, gamification, and virtual reality [6-9]. Since the COVID-19 pandemic, the population has turned to the internet as a source of information, and such a behavior has extended beyond the pandemic. Surveys suggest that one in every three to five persons seeks information before consulting a physician, depending on the age group. Consequently, the healthcare professionals (HCPs) and institutions have adopted the role of social media to spread health-related information [6,10,11]. TikTok is a fast-growing social media platform that utilizes short videos for content creation and sharing. As a relatively new platform, there is increasing interest in using these brief videos for purposes such as medical education, patient education, and advocacy [4,5]. They can demonstrate clinical skills, like physical examination techniques and history-taking abilities, or emphasize a particular learning objective in a visual and conversational way. The platform's video format is especially effective for producing micro-learning content that can be accessed "just in time". Hashtags help guide users to relevant content and can be strategically used to create a series of related videos that build on each other, similar to a tweetorial but in video form. The comments section allows educators to interact with learners, answer questions, or extend the discussion beyond what is covered in a short video clip [4,5,7,12]. TikTok is increasingly popular among the general public as a source of information and news. These trends can have implications for public health due to the abundance of health information on such platforms [13]. This work is the first to examine the AD information posted on the TikTok platform, a recently trending social media platform. The present study aims to explore the quality, source, and content of information, as well as the potential role of HCPs. Methods Study design This was a cross-sectional analysis of TikTok videos related to AD, conducted on April 30, 2025. A manual search was conducted on the TikTok platform using the hashtag "#Alzheimer", and the top videos were chosen. There were no limitations on the date of upload, and all video categories were taken into account. Videos that addressed AD, such as those discussing its definition, diagnosis, symptoms, treatment, awareness, or case presentations, and were posted in Arabic or English with the hashtag "#Alzheimer", met the inclusion criteria. Videos were excluded if they were in other languages, duplicated, or unrelated to the topic. There were no geographical limitations applied. Data collection Data collection was done separately by the authors on the same day. They used different mobile devices and the same search term: “#Alzheimer” and chose the most popular videos as they appear on the TikTok platform to show current trends. The authors checked for consistency by reviewing the videos independently while using the same search criteria. The videos were classified as suggested by earlier studies of health-related topics on TikTok [4,5,7,12]. The variables collected included usernames, video title, date of posting and days since uploaded, video duration, video sources or uploader (doctors, patients, family members, other medical staff, news agencies, organizations, and others), content type (therapy suggestion, disease description, lifestyle, news, fun, and others), and engagement metrics (number of likes, comments, and shares). During data collection and analysis, the investigators did not interact with the software application in any way. They did not make comments, likes, reactions, or messages. Quality assessment The DISCERN tool, a 15-item questionnaire designed for written health materials, evaluated the quality of health information in the videos. It was now commonly used for digital content [14]. The evaluation and rating were completed independently by three reviewers. The judgment of DISCERN tool items, which were initially intended for printed material, was the subject of the most common questions or disagreements. The final scores were decided by consensus. The total score could range from 16 to 80, where 63 to 80 suggested excellent quality, 51 to 62 was good quality, 39 to 50 was fair quality, 27 to 38 was poor quality, and 16 to 26 was very poor quality [15]. All scores were recorded in Excel to enable a thorough evaluation of each video’s clarity, balance, and informational quality. Statistical analysis Data were collected into an Excel sheet and then imported and analyzed using the R statistical software. Descriptive statistics were used; categorical variables were described as frequencies and percentages, while continuous variables were described as median and interquartile range (IQR) after testing for normality using the Shapiro-Wilk test with visualization. For associations among variables, the Fisher exact test was used for categorical variables and the Mann-Whitney U or Kruskal-Wallis test for continuous variables. Spearman’s correlation analysis was applied whenever a correlation analysis was intended. A p-value of 0.05 was considered the threshold for statistical significance. Regarding DISCERN score, the frequencies (%) for each answer of items were described, as well as the median (IQR) score for each item, and the total DISCERN score. Ethical considerations This study did not involve any patients, clinical data, or the use of human or animal subjects. All videos were publicly available on TikTok, and no personal or private information was collected. As there was no user interaction and no privacy concerns, ethical approval was not required. Results Results of the search process The study included 100 videos of the hashtag Alzheimer's. There were hundreds of videos on TikTok with the selected hashtag. Initially, 149 videos were selected, and 49 videos were excluded because 42 videos were in languages other than English, two videos were not related to AD, and five videos were repeated videos. Characteristics of TikTok videos on Alzheimer’s Of the 100 patients, 23 videos were streamed by physicians, 10 by other medical staff, 29 by family members, and none by patients (Table 1). Only 30 videos were on disease description, 10 on therapy suggestion, and 15 on lifestyle. The median duration of videos was 64.00 (38.00 to 114.25) seconds, with 43 videos less than one minute and 43 between one and three minutes. The median duration since upload of videos was 429.00 (78.00 to 686.25) days. The videos varied in median (IQR) engagement metrics: 4201.00 (300.25 to 66775.00) likes, 131.50 (13.00 to 1071.00) comments, and 438.00 (43.00 to 3414.00) shares. Table 1. Characteristics of the TikTok videos on Alzheimer's disease Label Levels Frequency (%) (N=100) Source of videos Physicians 23 (23.00) Other medical staff 10 (10.00) Patients 0 (0.00) Family members 29 (29.00) News agencies 2 (2.00) Organizations 4 (4.00) Others (Unclassified) 32 (32.00) Content of videos Disease description 30 (30.00) Therapy suggestion 10 (10.00) Lifestyle 15 (15.00) News 8 (8.00) Fun 10 (10.00) Others (Unclassified) 27 (27.00) Video duration in s