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

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.