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

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2 years ago

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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.

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Why I became a TechTrekker

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8 months ago

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22 August 2023

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group jumps into the air with snowy mountains in the background


My senior spring in high school, I decided to defer my MIT enrollment by a year. I had always planned to take a gap year, but after receiving the silver tube in the mail and seeing all my college-bound friends plan out their classes and dorm decor, I got cold feet. Every time I mentioned my plans, I was met with questions like “But what about school?” and “MIT is cool with this?”

Yeah. MIT totally is. Postponing your MIT start date is as simple as clicking a checkbox. 

Sofia Pronina (right) was among those who hiked to the Katla Glacier during this year’s TechTrek to Iceland.

COURTESY PHOTO

Now, having finished my first year of classes, I’m really grateful that I stuck with my decision to delay MIT, as I realized that having a full year of unstructured time is a gift. I could let my creative juices run. Pick up hobbies for fun. Do cool things like work at an AI startup and teach myself how to create latte art. My favorite part of the year, however, was backpacking across Europe. I traveled through Austria, Slovakia, Russia, Spain, France, the UK, Greece, Italy, Germany, Poland, Romania, and Hungary. 

Moreover, despite my fear that I’d be losing a valuable year, traveling turned out to be the most productive thing I could have done with my time. I got to explore different cultures, meet new people from all over the world, and gain unique perspectives that I couldn’t have gotten otherwise. My travels throughout Europe allowed me to leave my comfort zone and expand my understanding of the greater human experience. 

“In Iceland there’s less focus on hustle culture, and this relaxed approach to work-life balance ends up fostering creativity. This was a wild revelation to a bunch of MIT students.”

When I became a full-time student last fall, I realized that StartLabs, the premier undergraduate entrepreneurship club on campus, gives MIT undergrads a similar opportunity to expand their horizons and experience new things. I immediately signed up. At StartLabs, we host fireside chats and ideathons throughout the year. But our flagship event is our annual TechTrek over spring break. In previous years, StartLabs has gone on TechTrek trips to Germany, Switzerland, and Israel. On these fully funded trips, StartLabs members have visited and collaborated with industry leaders, incubators, startups, and academic institutions. They take these treks both to connect with the global startup sphere and to build closer relationships within the club itself.

Most important, however, the process of organizing the TechTrek is itself an expedited introduction to entrepreneurship. The trip is entirely planned by StartLabs members; we figure out travel logistics, find sponsors, and then discover ways to optimize our funding. 

two students soaking in a hot spring in Iceland

COURTESY PHOTO

In organizing this year’s trip to Iceland, we had to learn how to delegate roles to all the planners and how to maintain morale when making this trip a reality seemed to be an impossible task. We woke up extra early to take 6 a.m. calls with Icelandic founders and sponsors. We came up with options for different levels of sponsorship, used pattern recognition to deduce the email addresses of hundreds of potential contacts at organizations we wanted to visit, and all got scrappy with utilizing our LinkedIn connections.

And as any good entrepreneur must, we had to learn how to be lean and maximize our resources. To stretch our food budget, we planned all our incubator and company visits around lunchtime in hopes of getting fed, played human Tetris as we fit 16 people into a six-person Airbnb, and emailed grocery stores to get their nearly expired foods for a discount. We even made a deal with the local bus company to give us free tickets in exchange for a story post on our Instagram account. 

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The Download: spying keyboard software, and why boring AI is best

Published

8 months ago

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22 August 2023

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🧠


This is today’s edition of The Download, our weekday newsletter that provides a daily dose of what’s going on in the world of technology.

How ubiquitous keyboard software puts hundreds of millions of Chinese users at risk

For millions of Chinese people, the first software they download onto devices is always the same: a keyboard app. Yet few of them are aware that it may make everything they type vulnerable to spying eyes. 

QWERTY keyboards are inefficient as many Chinese characters share the same latinized spelling. As a result, many switch to smart, localized keyboard apps to save time and frustration. Today, over 800 million Chinese people use third-party keyboard apps on their PCs, laptops, and mobile phones. 

But a recent report by the Citizen Lab, a University of Toronto–affiliated research group, revealed that Sogou, one of the most popular Chinese keyboard apps, had a massive security loophole. Read the full story. 

—Zeyi Yang

Why we should all be rooting for boring AI

Earlier this month, the US Department of Defense announced it is setting up a Generative AI Task Force, aimed at “analyzing and integrating” AI tools such as large language models across the department. It hopes they could improve intelligence and operational planning. 

But those might not be the right use cases, writes our senior AI reporter Melissa Heikkila. Generative AI tools, such as language models, are glitchy and unpredictable, and they make things up. They also have massive security vulnerabilities, privacy problems, and deeply ingrained biases. 

Applying these technologies in high-stakes settings could lead to deadly accidents where it’s unclear who or what should be held responsible, or even why the problem occurred. The DoD’s best bet is to apply generative AI to more mundane things like Excel, email, or word processing. Read the full story. 

This story is from The Algorithm, Melissa’s weekly newsletter giving you the inside track on all things AI. Sign up to receive it in your inbox every Monday.

The ice cores that will let us look 1.5 million years into the past

To better understand the role atmospheric carbon dioxide plays in Earth’s climate cycles, scientists have long turned to ice cores drilled in Antarctica, where snow layers accumulate and compact over hundreds of thousands of years, trapping samples of ancient air in a lattice of bubbles that serve as tiny time capsules. 

By analyzing those cores, scientists can connect greenhouse-gas concentrations with temperatures going back 800,000 years. Now, a new European-led initiative hopes to eventually retrieve the oldest core yet, dating back 1.5 million years. But that impressive feat is still only the first step. Once they’ve done that, they’ll have to figure out how they’re going to extract the air from the ice. Read the full story.

—Christian Elliott

This story is from the latest edition of our print magazine, set to go live tomorrow. Subscribe today for as low as $8/month to ensure you receive full access to the new Ethics issue and in-depth stories on experimental drugs, AI assisted warfare, microfinance, and more.

The must-reads

I’ve combed the internet to find you today’s most fun/important/scary/fascinating stories about technology.

1 How AI got dragged into the culture wars
Fears about ‘woke’ AI fundamentally misunderstand how it works. Yet they’re gaining traction. (The Guardian) 
+ Why it’s impossible to build an unbiased AI language model. (MIT Technology Review)
 
2 Researchers are racing to understand a new coronavirus variant 
It’s unlikely to be cause for concern, but it shows this virus still has plenty of tricks up its sleeve. (Nature)
+ Covid hasn’t entirely gone away—here’s where we stand. (MIT Technology Review)
+ Why we can’t afford to stop monitoring it. (Ars Technica)
 
3 How Hilary became such a monster storm
Much of it is down to unusually hot sea surface temperatures. (Wired $)
+ The era of simultaneous climate disasters is here to stay. (Axios)
+ People are donning cooling vests so they can work through the heat. (Wired $)
 
4 Brain privacy is set to become important 
Scientists are getting better at decoding our brain data. It’s surely only a matter of time before others want a peek. (The Atlantic $)
+ How your brain data could be used against you. (MIT Technology Review)
 
5 How Nvidia built such a big competitive advantage in AI chips
Today it accounts for 70% of all AI chip sales—and an even greater share for training generative models. (NYT $)
+ The chips it’s selling to China are less effective due to US export controls. (Ars Technica)
+ These simple design rules could turn the chip industry on its head. (MIT Technology Review)
 
6 Inside the complex world of dissociative identity disorder on TikTok 
Reducing stigma is great, but doctors fear people are self-diagnosing or even imitating the disorder. (The Verge)
 
7 What TikTok might have to give up to keep operating in the US
This shows just how hollow the authorities’ purported data-collection concerns really are. (Forbes)
 
8 Soldiers in Ukraine are playing World of Tanks on their phones
It’s eerily similar to the war they are themselves fighting, but they say it helps them to dissociate from the horror. (NYT $)
 
9 Conspiracy theorists are sharing mad ideas on what causes wildfires
But it’s all just a convoluted way to try to avoid having to tackle climate change. (Slate $)
 
10 Christie’s accidentally leaked the location of tons of valuable art 🖼📍
Seemingly thanks to the metadata that often automatically attaches to smartphone photos. (WP $)

Quote of the day

“Is it going to take people dying for something to move forward?”

—An anonymous air traffic controller warns that staffing shortages in their industry, plus other factors, are starting to threaten passenger safety, the New York Times reports.

The big story

Inside effective altruism, where the far future counts a lot more than the present

" "

VICTOR KERLOW

October 2022

Since its birth in the late 2000s, effective altruism has aimed to answer the question “How can those with means have the most impact on the world in a quantifiable way?”—and supplied methods for calculating the answer.

It’s no surprise that effective altruisms’ ideas have long faced criticism for reflecting white Western saviorism, alongside an avoidance of structural problems in favor of abstract math. And as believers pour even greater amounts of money into the movement’s increasingly sci-fi ideals, such charges are only intensifying. Read the full story.

—Rebecca Ackermann

We can still have nice things

A place for comfort, fun and distraction in these weird times. (Got any ideas? Drop me a line or tweet ’em at me.)

+ Watch Andrew Scott’s electrifying reading of the 1965 commencement address ‘Choose One of Five’ by Edith Sampson.
+ Here’s how Metallica makes sure its live performances ROCK. ($)
+ Cannot deal with this utterly ludicrous wooden vehicle. 
+ Learn about a weird and wonderful new instrument called a harpejji.



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Why we should all be rooting for boring AI

Published

8 months ago

on

22 August 2023

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Why we should all be rooting for boring AI


This story originally appeared in The Algorithm, our weekly newsletter on AI. To get stories like this in your inbox first, sign up here.

I’m back from a wholesome week off picking blueberries in a forest. So this story we published last week about the messy ethics of AI in warfare is just the antidote, bringing my blood pressure right back up again. 

Arthur Holland Michel does a great job looking at the complicated and nuanced ethical questions around warfare and the military’s increasing use of artificial-intelligence tools. There are myriad ways AI could fail catastrophically or be abused in conflict situations, and there don’t seem to be any real rules constraining it yet. Holland Michel’s story illustrates how little there is to hold people accountable when things go wrong.  

Last year I wrote about how the war in Ukraine kick-started a new boom in business for defense AI startups. The latest hype cycle has only added to that, as companies—and now the military too—race to embed generative AI in products and services. 

Earlier this month, the US Department of Defense announced it is setting up a Generative AI Task Force, aimed at “analyzing and integrating” AI tools such as large language models across the department. 

The department sees tons of potential to “improve intelligence, operational planning, and administrative and business processes.” 

But Holland Michel’s story highlights why the first two use cases might be a bad idea. Generative AI tools, such as language models, are glitchy and unpredictable, and they make things up. They also have massive security vulnerabilities, privacy problems, and deeply ingrained biases.  

Applying these technologies in high-stakes settings could lead to deadly accidents where it’s unclear who or what should be held responsible, or even why the problem occurred. Everyone agrees that humans should make the final call, but that is made harder by technology that acts unpredictably, especially in fast-moving conflict situations. 

Some worry that the people lowest on the hierarchy will pay the highest price when things go wrong: “In the event of an accident—regardless of whether the human was wrong, the computer was wrong, or they were wrong together—the person who made the ‘decision’ will absorb the blame and protect everyone else along the chain of command from the full impact of accountability,” Holland Michel writes. 

The only ones who seem likely to face no consequences when AI fails in war are the companies supplying the technology.

It helps companies when the rules the US has set to govern AI in warfare are mere recommendations, not laws. That makes it really hard to hold anyone accountable. Even the AI Act, the EU’s sweeping upcoming regulation for high-risk AI systems, exempts military uses, which arguably are the highest-risk applications of them all. 

While everyone is looking for exciting new uses for generative AI, I personally can’t wait for it to become boring. 

Amid early signs that people are starting to lose interest in the technology, companies might find that these sorts of tools are better suited for mundane, low-risk applications than solving humanity’s biggest problems.

Applying AI in, for example, productivity software such as Excel, email, or word processing might not be the sexiest idea, but compared to warfare it’s a relatively low-stakes application, and simple enough to have the potential to actually work as advertised. It could help us do the tedious bits of our jobs faster and better.

Boring AI is unlikely to break as easily and, most important, won’t kill anyone. Hopefully, soon we’ll forget we’re interacting with AI at all. (It wasn’t that long ago when machine translation was an exciting new thing in AI. Now most people don’t even think about its role in powering Google Translate.) 

That’s why I’m more confident that organizations like the DoD will find success applying generative AI in administrative and business processes. 

Boring AI is not morally complex. It’s not magic. But it works. 

Deeper Learning

AI isn’t great at decoding human emotions. So why are regulators targeting the tech?

Amid all the chatter about ChatGPT, artificial general intelligence, and the prospect of robots taking people’s jobs, regulators in the EU and the US have been ramping up warnings against AI and emotion recognition. Emotion recognition is the attempt to identify a person’s feelings or state of mind using AI analysis of video, facial images, or audio recordings. 

But why is this a top concern? Western regulators are particularly concerned about China’s use of the technology, and its potential to enable social control. And there’s also evidence that it simply does not work properly. Tate Ryan-Mosley dissected the thorny questions around the technology in last week’s edition of The Technocrat, our weekly newsletter on tech policy.

Bits and Bytes

Meta is preparing to launch free code-generating software
A version of its new LLaMA 2 language model that is able to generate programming code will pose a stiff challenge to similar proprietary code-generating programs from rivals such as OpenAI, Microsoft, and Google. The open-source program is called Code Llama, and its launch is imminent, according to The Information. (The Information) 

OpenAI is testing GPT-4 for content moderation
Using the language model to moderate online content could really help alleviate the mental toll content moderation takes on humans. OpenAI says it’s seen some promising first results, although the tech does not outperform highly trained humans. A lot of big, open questions remain, such as whether the tool can be attuned to different cultures and pick up context and nuance. (OpenAI)

Google is working on an AI assistant that offers life advice
The generative AI tools could function as a life coach, offering up ideas, planning instructions, and tutoring tips. (The New York Times)

Two tech luminaries have quit their jobs to build AI systems inspired by bees
Sakana, a new AI research lab, draws inspiration from the animal kingdom. Founded by two prominent industry researchers and former Googlers, the company plans to make multiple smaller AI models that work together, the idea being that a “swarm” of programs could be as powerful as a single large AI model. (Bloomberg)

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