A diagnosis of dementia can instantly change the way the world sees someone. Stigma also has great reach: family and friends of people with dementia may also find that the world has moved away from them.
The internet at best can help make the reality of life with dementia more visible. And for some, the Internet is the only place where they can connect with others who are going through the same thing.
But the internet is not always at its best. The hashtag #Dementia on TikTok has 2 billion views. Here, creators create streams of content about their experience caring for someone with late-stage dementia. Many of the most popular videos are inspiring or educational. But among them, it’s easy to find viral videos in which caregivers – a term that many lawyers prefer to the more commonly used “guardians” – ridicule dementia patients and exacerbate their arguments on camera.
The creators did not dwell on the ethics of publishing content about someone who can no longer consent to the shooting. Meanwhile, people living with dementia themselves ask their own questions about consent and highlight the harm done by viral content that perpetuates stereotypes or misrepresents the full nature of the condition.
“This is a conversation that people with dementia have been having for some time,” said Kate Swaffer, co-founder. Dementia Alliance International, an advocacy group whose members all live with the disease. In 2008, when she was 49, Swaffer was diagnosed with “semantic dementia” from an early age.
In a sense, these conversations resonate with ongoing discussions “Exchange”, family bloggers and parenting influencers. Growing up are children who were once involuntary stars of parenting networks on social media there are opinions about how they were portrayed. But adults with dementia are not children, and while children develop the ability to consent as they grow older, their ability diminishes over time forever.
Legally a care partner or family member with a power of attorney may give consent on behalf of a person who is unable to do so. But advocates say the standard is not enough to protect the rights and dignity of those living with dementia in its later stages.
Swafer’s own standard is that no one should share content about anyone in these stages of dementia – on Facebook, at a photo exhibition or on TikTok – unless that person has given their explicit consent before losing their cognitive abilities.
She told her family, she says that if “they ever publish material about me, if I can’t give consent, I will come back and persecute them.”
Many of TikTok’s most popular videos about dementia showcase individual moments of inspiration. In one of them, a father, who is often nonverbal, whispers to his daughter “I love you”: 32 million views. Elsewhere, the daughter laughs when her dad, who she says “doesn’t remember how we are related,” remembers all the words from comedian Bo Burnham’s “Instagram of a White Woman.”
When Jacqueline Rever first joined the support group for caregivers of family members with dementia, she knew she hadn’t found her people. Revere, then 20, who had just stopped her life in New York to return home to California to care for her mother and grandmother, was a decade younger than anyone in the room.
“People were talking about taking capital and 401,000 of them out of their homes,” she said. “I ended up feeling worse. I didn’t have any of that. I didn’t have the resources. “
Eventually, Revere began publishing both @momofmymom, a pen that she felt summed up the dynamics of change between her and her mother Lynn. Then her mother could have a conversation and agree to the filming. It was more like they were running the channel together. She now has more than half a million TikTok subscribers, including many millennial colleagues who are also care partners.
Rever tries to make the content she wants available to her when she was just starting out. In one video she and her mother spend the day together, go for safe for Covid outdoor activities and hang out with friends in the park. In another Lapel sits in the car alone, talk emotionally about how she copes with her mother’s deteriorating abilities. She tries to capture her mother on camera, “when she just came out of the shower and her hair is done and she feels,‘ Oh, I’m that girl, ’” Revir says. She will tackle most difficult things until her mother is gone.
As her mother’s dementia progresses and Rever learns more about what story she wants to tell, her TikToks have turned into more educational. This is how she decides mom tendency to collect and store paper towels and napkins. That’s why it’s so it is important to build a support system both for you and for the person you care about. That’s why she should think well about how she reacts at the moment to a change in her mother’s cognitive abilities.
Videos like Revere’s can help caregivers understand how to deal with significant problems helping a loved one with dementia, or just make them feel less lonely, he says. Tipa 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 many who use social media to mock a person with dementia or speak out about the person they care about.
Sometimes family members and even caregivers publicly post posts to their personal social media accounts out of frustration, documenting a bad moment in a video and sharing it on Facebook – perhaps for the purpose of their family or friends to see, with than they deal.
Care partners publish such videos when they “feel misjudged for their treatment of a person living with dementia or [feel] that a person living with dementia is dangerous or aggressive, ”Snow says. But the video from one person’s point of view doesn’t tell the full story. “These are the two terms we hear so often:‘ Well, she’s become very aggressive! ’” Snow says. “And you watch the video and think,‘ Mm, you provoked her! She gave you five opportunities to back off. ”
Some of the earliest viral videos that Snow watched about those living with dementia were inclined to these stereotypes and were created to argue that the filmed person should not live on their own. These malicious videos eventually moved from the social network to Facebook, YouTube, and now TikTok. A TikTok account linked to a Canadian long-term workers’ organization became private last summer publishing videos in which workers mock patients with dementia.
Swaffer is also concerned about how viral videos depict the infantilization of people with dementia that she has noticed in real life. She recalls attending personal support groups in which she was “tucked away in a classroom” and treated as if she had little cognitive ability, although she completed three degrees and received a doctorate after being diagnosed. On the internet, she sees that this stereotype is reinforced in very popular videos showing how dementia patients play with children’s toys and dolls.
Stereotypes perpetuated through viral content have a significant negative impact on those living with dementia. Christine Telker, a Canadian activist and author, was diagnosed with vascular dementia eight years ago. Almost immediately, close people began to doubt her ability to work, drive a car, live independently.
Telker still lives alone. Once a week a volunteer comes to help her with things that are getting harder over time. But she says, “I still know how to drive. I can cook for myself. I did not lose all my abilities in one night. “
Swaffer has experienced hostility online for trying to challenge harmful stories about dementia.
“A long discussion about language, respectful language on our terms. People without dementia regularly say that we suffer or, you know, have dementia, ”she says. “Guardian groups have twice been bullied on social media for daring to say, ‘Please don’t call us martyrs.'”
Telker had a similar experience. “They don’t like it when we challenge the status quo,” she said. She often encountered this when talking about care methods that are not necessarily suitable for those in the early stages of dementia. “This status quo was based on the fact that people were diagnosed when they were already at a late stage. Not when they are in the early stages and can still function well for 20 years, ”she said.