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

Some influencers record people with dementia at their worst, and without their consent. Now, advocates are raising important questions about the ethics of these popular videos.

February 16, 2022
dementia care concept
dementia care concept
Ricardo Santos

A dementia diagnosis can instantly change how the world sees someone. The stigma has a long reach, too: family and friends of those with dementia might also find that the world has retreated from them.

The internet, at its 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 others going through the same thing.

But the internet isn’t always at its best. The #Dementia hashtag on TikTok has 2 billion views. Here creators produce streams of content about their experiences caring for someone with late-stage dementia. Many of the most popular videos are inspirational or educational. But among them, it’s easy to find viral videos in which care partners—a term many advocates prefer to the more commonly used “caregivers”—mock dementia patients and escalate arguments with them on camera.

Creators have not settled on the ethics of making public content about someone who may no longer be able to consent to being filmed. Meanwhile, people who are themselves living with dementia are raising their own questions about consent, and emphasizing the harms caused by viral content that perpetuates stereotypes or misrepresents the full nature of the condition.

“That’s a conversation that people with dementia have been having now for a while,” says Kate Swaffer, a cofounder of Dementia Alliance International, an advocacy group whose members all live with the condition. Swaffer was diagnosed with younger-onset semantic dementia in 2008, when she was 49.

In some ways, these conversations echo ongoing discussions about “sharenting,” family vloggers, and parenting influencers. Kids who were once 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 whereas children develop the ability to consent as they grow older, theirs will diminish permanently over time.

Legally, a care partner or family member with power of attorney can consent on behalf of a person who is unable to do so. But advocates say this standard is not nearly enough to protect the rights and dignity of those living with later-stage dementia.

Swaffer’s own standard is this: No one should share content about someone in those stages of dementia—whether on Facebook, in a photography exhibition, or on TikTok—if that person has not explicitly consented to it before losing the cognitive capacity to do so.

She’s told her family, she says, that if “they ever publish stuff about me when I can’t give consent, I’ll come back and haunt them.”

Virtual care

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

@davmauralsec

The first time Jacquelyn Revere walked into a support group for care partners of family members with dementia, she knew she hadn’t found her people. Revere, then a 20-something who’d just uprooted her life in New York City to come home to California to care for her mother and grandmother, was decades younger than anyone else in the room.

“People were talking about, you know, pulling equity out of their houses and their 401k,” she says. “I ended up feeling worse. I didn’t have any of that. I had no resources.”

Eventually, Revere began posting as @momofmymom, a handle that, she felt, summed up the changing dynamic between her and her mother, Lynn. Back then, her mother could hold a conversation and consent to be filmed. It felt more as though they were running the channel together. She now has more than half a million followers on TikTok, including many fellow millennials who are also care partners.

@momofmymom

Revere tries to make the content she wishes had been available to her when she was just starting out. In one video, she and her mother spend a day together, going to a covid-safe outdoor exercise class and hanging out with friends in the park. In another, Revere sits in the car alone, talking emotionally about how she’s handling her mom’s deteriorating capabilities. She tries to capture her mother on camera “when she’s fresh out of the shower and her hair is done and she feels like ‘Ooh, I’m that girl,” Revere says. She’ll address most of the tougher stuff while her mother is off screen.

As her mother’s dementia progresses, and Revere learns more about what kind of story she wants to tell, her TikToks have become more educational. Here’s how she solves her mother’s tendency to collect and stash paper towels and napkins. Here’s why it’s important to build 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 in the moment to her mom’s changing cognitive abilities.

Videos like Revere’s can help care partners understand how to handle the significant challenges of helping a loved one with dementia, or simply make them feel less alone, says Teepa Snow, an educator and occupational therapist who teaches care partners and care professionals how to work with those living with dementia. But for every creator like Revere, there are plenty who use social media to mock someone with dementia, or vent about the person they’re caring for.

Viral harm

Sometimes family members and even care professionals post publicly to their personal social media accounts out of frustration, documenting a bad moment in a video and sharing it on Facebook—maybe intending their family or friends to see what they’re dealing with.

Care partners post videos like this when they “feel misjudged for their treatment of a person living with dementia or [feel] that the person living with dementia is dangerous or aggressive,” Snow says. But a video from one person’s perspective doesn’t tell the full story. “Those are two terms we hear so often: ‘Well, she got really aggressive!’” Snow says. “And you watch the videos and you’re like, ‘Mm, you provoked her! She gave you five opportunities to back yourself off.’”

Some of the earliest viral videos that Snow recalls seeing about those living with dementia leaned into those stereotypes, and were created to argue that the person being filmed should not live independently. These harmful videos have migrated over time from the pre-social internet to Facebook, YouTube, and now TikTok. A TikTok account associated with a Canadian organization of long-term-care workers went private last summer after posting videos that featured workers mocking dementia patients.

Swaffer is also troubled by the way viral videos mirror the infantilizing of people with dementia that she’s noticed in real life. She recalls attending in-person support groups in which she was “shuffled off to an activity room” and treated as if she had few cognitive capabilities, though she completed three degrees and started a PhD after her diagnosis. Online, she sees this stereotype reinforced in hugely popular videos showing dementia patients playing with children’s toys and dolls.

Stereotypes perpetuated through viral content have a palpable negative impact on those living with dementia. Christine Thelker, a Canadian activist and author, was diagnosed with vascular dementia eight years ago. Almost immediately, people close to her began questioning her ability to work, drive a car, and live on her own.

Thelker still lives by herself. A volunteer comes by once a week to help her with things that are becoming more difficult over time. But, she says, “I still can drive. I can cook for myself. I didn’t lose all my abilities overnight.”

Swaffer has endured hostility online for attempting to challenge harmful narratives about dementia.

“There’s been a long discussion about language, respectful language on our terms. People without dementia regularly say that we are suffering or, you know, sufferers of dementia,” she says. “I’ve been bullied off of social media twice now by carers’ groups for daring to say, ‘Please don’t call us sufferers.’”

Thelker has had similar experiences. “They don’t like us challenging that status quo,” she says. She’s encountered this often when speaking out about care practices that aren’t necessarily appropriate for those in the earlier stages of dementia. “That status quo was based on people being diagnosed when they’re already hitting the late stage. Not when they’re in the early stages and could still function well for 20 years,” she points out.

Snow feels that the worst content she sees online stems partially from a lack of good support for care partners. “I think the biggest missing piece is further back, which is medical providers are not seeing dementia as a two-person condition,” she says—the second person being the one providing care.

These family members are not trained to be experts in dementia. Not everyone has the financial resources to see a therapist. And so some care partners will turn to Facebook groups, filling a gap left by medical providers. “They feel overwhelmed and they feel defeated and they feel frustrated,” Snow says. But those groups can reinforce some of the worst narratives about dementia, as members vent about their experiences and share photos of their loved ones at their worst moments.

This is something Snow encounters regularly in her own work. “Let’s see if we can acknowledge your feelings and then get you to a better place of care,” she says. “Because if we can’t get you to care differently, that person’s life and your life is gonna suck.”

Doing better

More people have started making plans for their digital footprint after they die. Sites like Facebook and Instagram have tools that let users specify how their account should be preserved, and who may access it. But fewer people think about what would happen to their online presence should they lose the ability to manage it themselves while they’re still alive, and not many speak with their loved ones about how they would like others to portray them.

There are no settled best practices for documenting and discussing dementia online. Even those with dementia don’t necessarily agree on the specifics. But the activists and care partners we spoke to for this story have some ideas.

Swaffer has joined several Facebook groups for care partners of those with dementia. She herself has been a care partner for others three times in her life. “My level of suffering as a care partner was so much greater than my level of suffering of having a diagnosis of dementia,” she says. “Watching somebody lose capacity and then die is bloody hard work.”

She sees many care partners deflect their suffering onto those with dementia, assuming that their experiences are one and the same. In reality, there are a variety of experiences, and these narratives can falsely create the idea that there is only one way to have dementia: as a progression of losses.

“Some of us are optimists, some of us are pessimists, and some of us are in the middle,” Swaffer says. A pessimist might lean into the tragedy and the suffering discourse, “and that’s okay, because it’s their personal experience,” she says. “I just don’t think publicly that that’s the only experience we should be portraying.”

Revere has learned over time to be more nuanced in how she portrays her mother. While her mom is certainly still aware of the camera, she has lost the ability to really consent to being filmed.

Sometimes, Revere learns painful new lessons about how to do this well. Her most viral video, in which she demonstrates how to take mouthwash away from her mother without starting a fight, is one that she now regrets posting.

“I don’t know if that was the moment,” she says. Her mother is not at her best in that video, and that’s a side that Revere now tends to keep private. When the video resurfaces in her feed, she has mixed feelings. She knows it helped other care partners like her. But, she says, “I don’t like feeling that way when my content pops up.”

Now, Revere waits 24 hours after she films a new video before posting anything to TikTok. Then, she rewatches it. If she still feels good at that point, she’ll post.

For this approach to work, the person doing the documentation must view the person living with dementia as a human being with thoughts deserving of respect.

Thelker, for her part, isn’t super worried about controlling her online presence as her dementia advances, although she hopes that her loved ones post tastefully about her. “I have so much stuff out there already, you know? Google me,” she says.

And that, in part, is because of the changes she’s witnessed among her peers. “I believe that over time, when I get to that stage, I will just sort of fall off of the radar,” she says. “There will be more people coming up behind me. Their face will take the place of mine and people will go, ‘I wonder whatever happened to her,’ you know?’”

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