Is it fair to film people with dementia and put it on TikTok?


Analysis

Going viral thanks to a parent is a classic TikTok scheme. Someone posts a video of their, usually out of touch, mother or father doing something silly and racks up millions of views. Soon enough, they’ve dedicated their entire account to videos of their parent reacting to pranks, doing TikTok dances, and repeating funny phrases they said before the camera was rolling.

While many of the parents shown in these videos are consenting to being filmed—or, at least to videos of them being posted—some TikTokers film their parents with dementia reacting to gimmicks or just going about their day. Dementia is the umbrella term for diseases that can develop with age that result in the loss of cognitive functioning, like retaining memories or even being able to take care of oneself. 

One of the most popular accounts that shows a parent with dementia is that of Dan Salinger. Salinger, who has over 1.5 million followers on TikTok, cares for his father, who has dementia. Salinger’s videos show his father confused about where he is, where he lives, and where his wife—who he divorced over 45 years ago—is living. Salinger also seems to sell merchandise with phrases his father has said, like “pardon me?” 

@Tonycat1016, who has almost 200,000 followers on TikTok, posts similar videos. She shows how she cares for her grandmother, who also has dementia. Videos show her grandmother eating meals, laughing with her granddaughter, and getting her hair blow-dried.

Some comments on Salinger and @Tonycat1016’s videos come from people familiar with dementia: They say that they’re happy to see both TikTokers raising awareness of the condition, showing how patient they are with their loved one, and making final memories with them. 

Others, however, find the filming and monetizing a person with dementia morally wrong: A Reddit post about @Tonycat1016’s videos call the account “absolutely sickening.” And a recent video showing a screenshot of Salinger’s father ridicules Salinger for trying to make money off of his father’s condition.

Why it matters

Is Salinger’s father aware that he is being filmed? Does @Tonycat1016’s grandma know how many people watch her videos? Do either understand that a frequently updated video archive of their daily lives exists in the public domain online?

It comes down to consent. While caregivers most likely have their loved ones’ consent to make important medical decisions on their behalf, it’s ultimately unclear if these older adults have consented to being filmed and posted online—and if they did consent, is that consent still valid?

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Source: https://www.dailydot.com/irl/tiktok-dementia-fair/