2024 Theses Doctoral

Removing the Cloak of Invisibility: A Descriptive Analysis of the Most Viewed YouTube Videos Related to Informal Caregivers of People Living with Alzheimer’s/dementia

Mendelson, Melissa L.

In 2050, global estimates indicate that 139 million people will have dementia. Responsible for 60% to 80% of dementia cases, Alzheimer’s disease is the fifth leading cause of death in American adults aged 65 plus and one of the top ten leading causes of death in the United States (U.S.) overall. The clinical manifestations of Alzheimer’s disease expand the nature of the problem from the individual to caregivers. More than 11 million people living in the U.S. provide informal, unpaid care for a loved one with dementia. In recent years, this care equated to an average of nearly 17 billion hours of work. Research shows increased levels of stress, depression, other urgent health issues, and ultimately death, in Alzheimer’s/dementia caregivers compared to non-carers, especially in women.

As such, caregivers inadvertently become “invisible second patients,” often neglecting their own health, while focusing on the needs of the care recipient. Enhancing the quality of life and protecting the health and well-being of caregivers is not only essential for their own livelihood, but that of the person living with the condition, as well as communities, healthcare systems and societies, globally. YouTube is a ubiquitous and powerful communications vehicle that is well-positioned to help achieve this goal. With billions of video views occurring daily across 100 plus countries and 92% of viewers asserting that they access information and gain knowledge through the social media platform, it is clear that YouTube appeals to viewers of all backgrounds and literacy levels.

There is a substantial amount of research characterizing the content of YouTube videos related to various health topics and caregiving with respect to conditions other than Alzheimer’s; however, studies describing YouTube videos about Alzheimer’s and related care provision are rare. This study intends to fill critical lacunae in the scientific literature by examining the sources, speakers, formats, length and content of the most widely viewed YouTube videos surrounding Alzheimer’s/dementia caregivers through a cross-sectional, descriptive analysis.

On October 9, 2022, a clean web browser and YouTube search history were used to locate and select the videos for the study by way of the search term, “alzheimer,” where the YouTube filter was set to sort by view count. After exclusions, a sample of N= 100 of the most highly viewed videos, collectively viewed N= 146,950,160 times, was identified for coding.

The results indicated that the average video duration was 11.68 (SD = 16.54) minutes (range = 0.13–87.45 minutes). Most videos (n= 47) were one to four plus minutes in length. More than half (n= 54) of the videos examined originated in the U.S. Videos with Multiple (combination of) Sources comprised the source type found in highest frequency (n= 52) and corresponding cumulative views (>68%), whereas only n= 1 video was posted by a Government Source, securing a mere 0.47% of the views. Compared to other formats, videos with Multiple Formats were found in greatest frequency (n= 85) and number of views (~93%). Videos where the primary speaker was a Layperson (n= 51) garnered the most views (~77%) versus other speaker types.

The results also revealed content most and least likely to be covered and viewed. The highest coverage and views for topics related to Alzheimer’s dementia outweighed those of caregiving as follows: Alzheimer's Awareness (n= 99 videos), 99.89% of cumulative views; overall Assessment, detection, diagnosis and/or screening (n= 93), ~97% of views; Warning signs (n= 86), ~94% of views; Symptoms (n= 87), 94% of views; versus Alzheimer’s dementia family/informal caregivers (n= 45), ~34 % of views and caregiver involvement (n= 42), ~32% of views. In addition, overall attention to caregiver burden and maintenance of caregiver health and well-being was weak and that of advocacy efforts (plans, policies, legislation, proceedings, etc.) for the health, well-being and quality of life of carers and people living with Alzheimer’s was essentially non-existent. Contact information (n= 97) was regularly provided to potentially aid in viewer mobilization (~80% views); however, it was rarely connected to entities providing caregiver-specific supports and assistance. Three quarters of the videos (83% of the views) did not have citations. Questionable information was found in approximately one quarter of the videos (with >20% of cumulative views). Examples of questionable information included unproven available treatments such as intermittent fasting, diet modification and supplements, herbs and coconut oil to potentially halt or reverse the deleterious effects of the condition.

Strategies and recommendations were presented relevant to a longer-term research agenda; policies and legislation to advance Alzheimer’s/caregiving initiatives; collaborative approaches to care and educational programs; and training for video producers and viewers about respective, optimal dissemination and evaluation of credible and authoritative health information on YouTube.

YouTube is a welcome, familiar and accessible communications vehicle that should be leveraged to better understand, advocate for and deliver medically accurate, on-demand critical supports, skill-building and educational programs to carers for people living with Alzheimer’s everywhere, who are overwhelmed, pressed for time and in dire need of assistance. YouTube represents an efficient, cost-effective means through which to improve the health outcomes and quality of life of caregivers, as well as their loved ones with Alzheimer’s.