Why Are TikTok Teens Listening to an Album About Dementia?

Why Are TikTok Teens Listening to an Album About Dementia?


As leaves change and temperatures plummet, some TikTok teens have left behind carefree summer content for autumnal meditations on memory and mortality.


Hundreds of users have posted videos about listening to “Everywhere at the End of Time,” a harrowing six-and-a-half-hour ambient composition by the Caretaker, an alias of the British experimental musician Leyland James Kirby.


The album - released in six stages between 2016 and 2019 and lauded by tastemakers - slowly decays in sound quality with each iteration. The first is a haunting loop of ballroom music; the final stage is barely audible beneath a blanket of static. The project attempts to simulate a fading memory, exploring how musical appreciation is, according to published research on the topic, among the last abilities dementia patients hold onto.


Mr. Kirby’s conceptual album struck a chord with the TikTok user @echoinc, who posted a snippet of the album on Aug. 2 and encouraged followers “looking to hear/read something sad” to listen to the full album on YouTube. To date, more than 720 TikTok users have used the same audio clip in videos.


Among them is Owen Amble, 16, from Spokane, Wash. He was drawn to “Everywhere at the End of Time” because his grandfather was recently diagnosed with dementia. “I want him to be OK, and I just wanted to know, like, what was going on,” he said in a phone interview.


On Sept. 17, Owen posted a TikTok about how the album had reduced him to tears. “Literally the definition of pain,” he wrote in the caption. “Never cried listening to something.” His video has been viewed more than 340,000 times.


“It made me feel like I was so sad, but I was also like, so happy, because it truly made me appreciate this part of my life so much more,” he said of the album. “I’m still a kid, I don’t have a lot of these responsibilities. And I’m just making all these memories. But to think that one day, everything I’ve ever done can just disappear, because of my memory. It’s so horrifying.” He said the album helped him understand his grandfather’s illness.


“The composer of this music really was onto something in terms of being able to - through the medium of music - lead a younger generation on a journey through the sounds of what the brain is going through, through a dementing process,” said Brian Browne, the president of Dementia Care Education, which trains people who work with dementia patients. “It’s a much welcome thing, because it produces the empathy that’s needed.”


Some of the TikTok videos, which have been remarked upon by several digital media outlets, challenged others to sit through the record as a test of endurance, describing physiological symptoms they experienced after doing so. “I really shouldnt have listened to all 6 hours, my body feels numb & i wont stop crying,” one user wrote. “You feel more and more like you have dementia,” Owen said of his listening experience. “By the end, my mind was so fogged.”


“It doesn’t surprise me at all that he felt wiped,” said Nina Kraus, a professor at Northwestern University who researches the effects of sound on the brain. “Whether that actually causes brain damage that you can measure, I don’t think so.” She said only an activity sustained over a long period of time, like learning a musical instrument, could have such dramatic effects. “Our nervous system doesn’t change moment to moment in any real fundamental way,” she said.


The Caretaker challenge sits at the nexus of two viral vectors on TikTok: nostalgia and fear. Young people have often used the app to discover and re-contextualize music from the past; recently Fleetwood Mac’s “Dreams” surfaced on pop music charts after appearing in a skateboarding video.


These videos are also an example of creepypasta, in which users post disturbing phenomena in order to spook others. Often, these memes walk a thin line between fantasy and hoax. Several have gone viral on TikTok, including fake stories about the random-coordinate-generator app Randonautica and tales about the haunting image of Momo.


While music is not known to induce dementia symptoms in healthy people, and has even been shown to help animate people dealing with memory loss, Mr. Kirby, 46, wrote in an email that his album often provokes strong emotions. He first released music as the Caretaker (a reference to “The Shining”) in 1999 and has used the persona to explore memory and aging across ten albums.


“Older listeners have been unable to finish the work as they have the experience of losing loved ones to dementia so it becomes difficult for them,” he wrote of “Everywhere at the End of Time.” “The reaction from some younger listeners who find the work difficult shows an empathy with what dementia is and how it destroys a person’s memories in a devastating way.”


Some online commentators criticized the TikTok videos. “Seriously please do not turn The Caretaker into some weird online challenge. IT’S NOT A MEME,” wrote one Twitter user. “IT IS A REAL DEPICTION OF A DEADLY DISEASE WITH NO CURE.”


Mr. Kirby, however, took no issue with the trend. “The fact it’s been made into a challenge by some to listen to this work in full is a reaction to a need for experiences and shared experiences which goes hand in hand with modern social media tropes,” he wrote, adding that he did not feel as if the TikTok videos were “disrespecting the work” at all.


“I think that anything that can enable awareness, open a discussion and give people some empathy with people and family members suffering from Alzheimer’s and dementia especially among the young is a good thing,” he wrote.

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