The most popular dementia videos on TikTok tend to have the lowest quality, study find

Are the most popular dementia-related videos on TikTok actually informative, or do they fall short of providing valuable information to the public? A recent study published in Frontiers in Public Health has revealed that the quality of information on dementia across TikTok videos is worryingly low, despite the platform’s potential as a powerful tool for public health education.

Dementia is a term that describes a collection of symptoms affecting memory, cognitive function, and social abilities severely enough to interfere with daily life. It is not a single disease but rather a general term that encompasses a wide range of specific medical conditions, including Alzheimer’s disease, which is the most common form.

Dementia is characterized by the deterioration of thinking abilities, memory loss, and the loss of the ability to perform everyday activities. Although it predominantly affects older individuals, it is not a normal part of aging.

“As the elderly population grows and dementia becomes more common with age, it is expected that dementia cases will rise. Social media can greatly aid health communication and promote engagement in dementia research. Given that more patients research online before seeing a doctor, we aimed to assess the adequacy of this information for patients and their families,” explained study author Jovana Petrović, a psychiatry resident and PhD student at the University Clinical Centre Niš.

To understand the nature of dementia-related content on TikTok, the researchers conducted a cross-sectional analysis of 100 videos using the hashtag “dementia” over two months in 2023. They employed a new research account on an Android app to ensure unbiased results, collecting data on videos sorted by like count to prioritize popular content.

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Each video was given a unique identifier and linked to detailed data, including metrics like likes, comments, and shares, and a screenshot was taken for verification. Videos not in English or containing animal content were excluded from the study.

The quality of the content was assessed using two measures: the DISCERN instrument and the Global Quality Score (GQS). DISCERN is a tool designed to judge the quality of written health information, and it includes a questionnaire that reflects different quality criteria. The GQS is a simpler, five-point scale that rates the overall quality from poor to excellent.

These tools were used to evaluate how the videos presented information regarding dementia treatments and choices. Two reviewers independently scored the videos, with any discrepancies resolved through a consensus model.

What the researchers found was concerning for anyone relying on social media for health information. The median duration of the analyzed videos was a brief 42 seconds, yet they amassed tens of millions of likes and thousands of comments and shares. A substantial majority of the videos were posted by family members, while content from arguably more reliable sources, such as doctors, was less common and less popular.

The researchers found that there was a strong correlation between the number of likes, comments, and shares, indicating that videos that were more engaging were more likely to be interacted with. However, this engagement did not translate to higher quality information.

Despite high engagement metrics, the most popular dementia-related videos on TikTok were largely lacking in educational and academic value. Both the DISCERN scores and the GQS indicated that the majority of videos were of very poor or poor quality.

“This study shows that the most popular dementia videos on TikTok are the least educational and academic in quality,” Petrović told PsyPost. “This implies TikTok users struggle to differentiate between high and low-quality content. The trend might relate to TikTok’s user base, which favors lifestyle and entertainment, thus preferring visually appealing videos. Consequently, credible but serious or monotonous professional content struggles to gain popularity.”

Videos uploaded by doctors did fare slightly better, scoring closer to ‘fair’ or ‘good’ quality, suggesting a disconnect between what is popular and what is informative.

“Currently this social media is not a reliable source for information that could impact decisions regarding the diagnosis and treatment of dementia,” Petrović said. “Boosting the number of videos from doctors or academic groups and keeping content engaging yet professional could increase audience interest and spread accurate medical knowledge more effectively.”

Despite the study’s rigorous approach, there were limitations. The analysis only included the top 100 videos, which might not represent the breadth of dementia content on TikTok. Moreover, the search was conducted at a single point in time, and the videos were only sorted by likes, which could have introduced a selection bias. Future research could include a broader range of videos and investigate the impact of background music or video quality on user engagement.

“This research is the first to evaluate the quality and reliability of information about dementia on TikTok, addressing a lack of research on mental health content on the platform,” Petrović said. “It seeks to inspire more research and establish a standard for future studies on dementia content in social media.”

The study, “The quality of information provided by the most popular dementia videos on TikTok,” was authored by Stevo Lukić and Jovana Petrović.