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Dementia content gets billions of views on TikTok. Whose story does it tell?

The diagnosis of dementia can immediately change the way the world views someone. The stigma also has a long way to go: even family and friends of people with dementia may feel that the world has turned their backs on them.

The Internet, at best, can help make the reality of living with dementia more visible. And for some, the Internet is the only place they can connect with other people going through the same thing.

But the Internet is not always the best. The hashtag #Dementia has received 2 billion views on TikTok. Here the producers generate content trends about their experiences caring for a person with late-stage dementia. Many popular videos are inspirational or educational. But out of it, it’s easy to find viral videos in which care partners – a term many lawyers prefer to use “caregivers” – make fun of dementia patients and escalate arguments with them on camera.

The producers have not settled on the ethics of creating public content about someone who can no longer consent to filming. Meanwhile, people who live with dementia themselves are raising their own questions about consent, and emphasizing the harm caused by viral content that perpetuates stereotypes or misrepresents the full nature of the condition.

Kate Swafer, co-founder of Dementia Alliance International, says, “This is the kind of conversation that people with dementia have been doing for a while now,” said one advocacy group whose members all live with the condition. Swaffer was diagnosed with semantic dementia at a young age in 2008, when she was 49 years old.

In some ways, this conversation echoes ongoing discussions about “sharing”, family vloggers, and parenting influencers. Kids who were once the involuntary stars of their parents’ social media feeds grow up and have opinions about how they were portrayed. But adults with dementia are not children, and as children develop the ability to consent as they grow older, their ability to do so will diminish forever.

Legally, a power of attorney can give consent on behalf of a care partner or family member who is unable to do so. But advocates say the norm is not enough to protect the rights and dignity of people living with post-traumatic stress disorder.

Sweeper’s own standard is this: No one should share content about a person in that stage of dementia – whether it’s on Facebook, in a photography exhibition or on TikTok – unless that person has explicitly agreed to do so before losing their cognitive ability.

She tells her family, “If they publish content about me when I can’t agree, I’ll come back and torture them.”

Virtual care

Many popular TikTok videos about dementia have different moments of inspiration. In one, a father who often nonchalantly tells his daughter “I love you”: 32 million views. In another, a daughter laughs as her father, who says she doesn’t remember “how we’re related,” recalls all the words from comedian Bo Burnham’s song “White Woman Instagram.”

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When Jacqueline Rever first joined a support group for family members with dementia care partners, she knew she hadn’t met her people. Revere, then a 20-something who just wiped out her life to come home to California to take care of her mother and grandmother in New York City, was decades younger than anyone else in that room.

“People were talking, you know, pulling equity out of their homes and their 401k,” she says. “It simply came to our notice then. I had none of that. I didn’t have the resources. “

Eventually, Rever started posting as momofmymom, a handle that she felt summed up the changing dynamics between her and her mother, Lynn. At the time, her mother could communicate and consent to filming. It was as if they were running a channel together. She now has over half a million followers on TikTok, including many fellow millennials who are also care partners.

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Revere tries to make the material she wants available to her when she was just starting out. In one video, he and his mother spend a day together, attending a covid-safe outdoor exercise class and hanging out with friends in the park. In the other, Revere sits alone in the car, talking emotionally about how she’s handling her mom’s deteriorating abilities. He tries to capture his mother in the camera “when he’s fresh from the shower and her hair is done and she thinks, ‘Oh, I’m that girl,'” Revere says. He will address most of the difficult issues when his mother is off screen.

As her mother’s frenzy grows, and Revere learns more about what kind of story she wants to tell, her TikToks become more academic. Here’s how she tackles her mother’s instinct to collect and hide paper towels and napkins. Here’s why it’s important to create a support system for both you and the person you’re caring for. Here’s why she has to think carefully about how she responds to her mom’s changing cognitive abilities in the moment.

Tipa Snow, a teacher and occupational therapist who teaches how to work with care partners and care professionals, says videos like Revers can help care partners understand the important challenges of helping a loved one with dementia or making them feel less alone. Is. Those who live with dementia. But for every creator like Revere, there are a lot of people who use social media to make fun of a person suffering from dementia or to talk about the person they care about.

Viral damage

Sometimes family members and care professionals also post in public on their personal social media accounts in frustration, documenting a bad moment in a video and sharing it on Facebook કદાચ perhaps intending to see what their family or friends are doing.

Care Partners post videos like this when they “feel misunderstood for their treatment of dementia or a person living with dementia. [feel] That person living with dementia is dangerous or aggressive, “says Snow. But the video doesn’t tell the whole story from one person’s perspective. “Those are the two words we often hear: ‘Well, she’s gotten really aggressive!'” Snow says. “And you watch the video and you think, ‘M, you provoked him! She gave you five chances to get yourself back. “

Snow recalls that some of the early viral videos about people living with dementia were wrapped up in those stereotypes, and were made to argue that the person being filmed should not live independently. These harmful videos have moved over time from the pre-social Internet to Facebook, YouTube, and now TikTok. A TikTok account affiliated with the Canadian organization of long-term care workers went private after posting a video last summer in which workers mocked dementia patients.

Sweeper is also disturbed by the way the viral video reflects the infants of people with dementia that she has noticed in real life. She remembers attending individual support groups in which she was “moved to an activity room” and was treated as having some cognitive abilities, although she completed three degrees and began her PhD after her diagnosis. Online, she sees this stereotype reinforced in a hugely popular video in which dementia patients are seen playing with children’s toys and dolls.

Permanent stereotypes by viral content have a clear negative effect on people living with dementia. Canadian activist and author Christine Thalker was diagnosed with vascular dementia eight years ago. Almost immediately, people close to her began to question her ability to work, drive a car, and live on her own.

Thelkar still lives alone. A volunteer comes once a week and helps her with things that become more difficult over time. But, he says, “I can still drive. I can cook for myself. I have not lost all my abilities overnight.

Sweeper has endured online hostility for trying to challenge harmful stories about dementia.

“On our terms, there has been a long discussion about language, respectable language. People without dementia regularly say we are suffering or, you know, suffering from dementia, “she says.” Please don’t call us victims. ‘

Thelkar has had similar experiences. “They don’t like us challenging that status quo,” she says. She has often encountered this when talking about care practices that are not necessarily appropriate for people who are in the early stages of dementia. “It simply came to our notice then. Not when they are in the early stages and can still function well for 20 years, “she points out.

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