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A dementia diagnosis can instantly change how the world sees someone. Stigma also has a long reach: Family and friends of people with dementia may also see the world turn away 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 who are experiencing the same thing.
But the internet isn’t always at its best. The hashtag #Dementia on TikTok has been viewed 2 billion times. Here, creators produce content streams about their experience of caring for someone with late-stage dementia. Many of the most popular videos are inspiring or educational. Among them, however, it’s easy to find viral videos in which care partners (many advocates’ preferred term for the more commonly used “caregivers”) mock dementia patients and escalate discussions with them on camera.
The creators have no longer settled on the ethics of making public content about someone who can’t consent to be filmed. Meanwhile, people living with dementia themselves raise their own questions about consent and highlight the harm caused by viral content that perpetuates stereotypes or misrepresents the exact nature of the condition.
“This is a conversation that people with dementia have had for a while,” says co-founder Kate Swaffer. Dementia Alliance International, an advocacy group whose members all live with the condition. Swaffer was diagnosed with younger-onset semantic dementia in 2008, at age 49.
In some ways, these conversations echo the ongoing debate about “share” family vloggers and parenting influencers. Children who were once reluctant stars of their parents’ social media feeds are growing up and they have ideas about how they are portrayed. Adults with dementia are not children, however, and while children develop the ability to consent as they get older, theirs will decline permanently over time.
Legally, a carer or family member holding a power of attorney can consent on behalf of a person who is unable to do so. But advocates say that standard is not nearly enough to protect the rights and dignity of those living with advanced dementia.
Swaffer’s own standard is that no one should post content about someone in these stages of dementia – on Facebook, in a photo exhibition or on TikTok – unless that person expressly consented to it before they lost their cognitive capacity.
He told his family that if they “published something about me that I couldn’t let go, I would come back and haunt them.”
virtual care
Many of the most popular TikTok videos about dementia have isolated moments of inspiration. In one, a usually nonverbal father whispers “I love you” to his daughter: 32 million views. In another, a girl laughs as her father, who says he “doesn’t remember how we were related,” remembers all the lyrics to comedian Bo Burnham’s song “White Woman’s Instagram.”
When Jacquelyn Revere first entered a support group for caring partners of family members with dementia, she knew she couldn’t find her people. Revere, then in his 20s, who had uprooted his life in New York and came to California to care for his mother and grandmother, was decades younger than everyone else in the room.
“People were talking, you know, about issuing stocks on their homes and 401,000s,” he says. “I felt worse in the end. I didn’t have any of these. I didn’t have the source.”
Finally, he started posting as Revere @momofmymom, a handle that she feels epitomizes the changing dynamic between herself and her mother, Lynn. Back then, her mother could give a speech and let it be filmed. I felt like they were running the channel together. He currently has over half a million followers on TikTok, including many millennials who are also maintenance partners.
When Revere is just starting out, he tries to make the content he wants available to him. In a video, he and his mother spend a day togetherGoing to a covid safe outdoor exercise class and hanging out with friends in the park. In another, Revere sits alone in the car., talk emotionally about how her mother coped with her deteriorating abilities. Revere tries to get her mom on camera “when she’s just got out of the shower and her hair is done and she’s feeling like, ‘Ooh, that’s the girl.’ She’s going to tackle many of the harder stuff when her mom is off screen.
As her mother’s dementia progresses and Revere learns more about what kind of story she wants to tell, her TikTok more educational. Here’s how her mom solved her problem tendency to collect and store paper towels and napkins. Because of this important for building a support system both for you and the person you are interested in. That’s why it has to think carefully about how she reacted at that moment to her mother’s changing cognitive abilities.
Videos like Revere’s can help care partners understand how to overcome the important challenges of helping a loved one with dementia or simply make them feel less alone, she 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 of people who use social media to mock someone with dementia or talk about the person they care about.
viral damage
Sometimes family members and even caregivers, frustratedly, post publicly on their personal social media accounts, videotape a bad memory and post it on Facebook – perhaps with the goal of letting their family or friends see what they’re dealing with.
Care partners post videos like this when they “feel misjudged for treating someone with or without dementia.” [feel] “The person living with dementia is dangerous or aggressive,” says Snow. But from one person’s point of view, a video doesn’t tell the whole story. “Those are two terms we hear all too often: ‘Well, he’s gotten really aggressive!'” Snow says. “Mm, you provoked him! He gave you five opportunities to back off.”
Some of the earliest viral videos that Snow remembers seeing about those living with dementia were based on these stereotypes and were created to advocate that the filmed person should not live independently. Over time, these harmful videos have migrated from the pre-social web to Facebook, YouTube and now TikTok. A TikTok account associated with a Canadian organization of long-term care workers went private last summer. posting videos featuring workers making fun of dementia patients.
Swaffer is also annoyed that viral videos reflect the infantilization of people with dementia, whom he has noticed in real life. Despite completing three degrees and starting a PhD after her diagnosis, she remembers attending face-to-face support groups where she was “shuffled into an activity room” and treated as if she had little cognitive ability. He sees this stereotype reinforced in hugely popular videos online showing dementia patients playing with children’s toys and dolls.
Stereotypes perpetuated through viral content have a tangible 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 him began to question his ability to work, drive, and live on his own.
Thelker still lives on his own. A volunteer comes in once a week to help him with things that get more difficult with time. But he says, “I can still drive. I can cook for myself. I didn’t lose all my talents overnight.”
Swaffer has endured hostility online for trying to challenge harmful narratives about dementia.
“There has been a long discussion about language, a respectful language on our terms. “People without dementia regularly say we suffer or have dementia,” she says. “I was bullied twice on social media for daring to say ‘Please don’t call us sick’ by carer groups.”
Thelker had similar experiences. “They don’t like that we challenge this status quo,” he says. He comes across this often when talking about care practices that are not necessarily appropriate for those in the early stages of dementia. “This status quo was based on people who were already diagnosed when they were in the late stage. “It’s not when they’re in the early stages and can still function well for 20 years,” he notes.
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