How TikTokers are bringing #dementia out of the shadows : Shots - Health News On TikTok, the hashtag "dementia" has 3 billion views. Caregivers of people with Alzheimer's and other dementias have been using the site to swap tips and share the burdens of life with dementia.

On #dementia TikTok, family caregivers find support and bring the disease to light

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SACHA PFEIFFER, HOST:

On TikTok, the #dementia has 3 billion views. Caregivers for people with dementia have been flocking to the site. They're posting their experiences and finding support in the videos of others who understand. They're using the social media platform to show what dementia really looks like and to share the problems and burdens and joys of being a caregiver. In this week's All Tech Considered story, Michigan Radio's Kate Wells explains how one woman's TikTok channel exploded in popularity and created a community.

KATE WELLS, BYLINE: In this TikTok video, Jacquelyn Revere is hiding out in her car, snagging some precious time just for herself. She puts up a quick post for her 650,000 followers.

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JACQUELYN REVERE: Hey, loved ones. I just wanted to say hi.

WELLS: Jacquelyn's mom has dementia and can never be left alone. But today someone else was watching her, and Jacquelyn could run some errands and just breathe.

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REVERE: And throughout this entire journey, sometimes I have to remind myself to just, like, chill out because I'm always trying to, like, fix a problem or catch something before it becomes a huge one.

WELLS: Jacquelyn is 35 years old and lives in LA, but during her 20s, she lived in New York. She was hustling, trying to break into comedy writing. She loved it. But then her mom started getting lost driving home from work. She'd forget to pay the mortgage. It was Alzheimer's. And Jacquelyn is an only child, so she moved back to LA to care for her full time. This is something Elena Portacolone, who studies aging at UC San Francisco, sees all the time.

ELENA PORTACOLONE: Because here in the United States, unfortunately, there is not a very strong system of support - of paid support - for people with dementia.

WELLS: There are more than 16 million people in the U.S. caring for someone with Alzheimer's and related dementias. More than two-thirds of those caregivers are women.

PORTACOLONE: And so the most common way of supporting persons with dementia is the daughter.

WELLS: Portacolone says most of these women are not paid, and many, like Jacquelyn, have to quit their jobs to be caregivers. It's isolating. And during the pandemic, the systems that are there to support caregivers, like the adult day care center that Jacquelyn's mom went to, shut down. Trapped at home seven days a week, Jacquelyn's mom deteriorated even faster. So to cope, Jacquelyn started posting short videos to TikTok about how they were getting through the days, like this 2020 post about how she gives her mom a bath.

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REVERE: It's bath day. I try my best not to make this an emotionally draining experience. So let's begin.

WELLS: Giving someone with dementia a bath is actually really difficult and can even be dangerous. They can get disoriented or feel threatened when someone takes off their clothes or maneuvers them into a wet tub. They may slip and fall or even try to physically fight their caregiver. But Jacquelyn is a bath pro. First, Jacquelyn goes to get her mom.

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REVERE: Good morning. How are you?

LYNN HINDMON: Hi.

WELLS: That quiet, hi, you hear is Lynn, Jacquelyn's mom. At this point, she's 63. It's about five years after her Alzheimer's diagnosis, and she's not speaking much. But Lynn is still gorgeous. She's tall and regal with great cheekbones. Lynn still loves to pick out her own clothes. She's wearing a purple beanie, gold hoops, pink lipstick, neon blue leggings. And Jacquelyn starts off by promising her mom a present - but after the bath.

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REVERE: We're going to get you some new lipstick, all right? Let's start. Turn on the water.

WELLS: Jacquelyn walks her audience through the process, sharing what works for them - turn on the soul music, plug in the space heater, put the dog outside.

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REVERE: Lure her into my cave - I'll see you guys after.

WELLS: Then the video cuts to after the bath. Lynn is dressed. They're celebrating with a dance party in the bathroom.

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REVERE: We dance, and we dance, and we dance. When we're done, she gets a gift.

WELLS: At last, the sleek, black tube of lipstick, as promised - Lynn beams.

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REVERE: I have a present. Here you go. It's open. I opened it for you.

WELLS: Jacquelyn could not believe this bath video got more than 20,000 views. The comments went nuts. People told Jacquelyn how much they can relate, how they've made it through bath time with their parent or grandparent. And for years, Jacquelyn had been so lonely, caring for her mom and their house and the bills and the doctors and insurance all on her own, but TikTok changed that. She posted a follow-up right away.

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REVERE: How many of us are on here? I've been, like, looking for people my age that I can, like, relate to, who have the same experience.

WELLS: People reached out from as far away as South Africa. She went from just a couple thousand followers to 650,000. They wanted to see her triumphs and the moments of total exhaustion.

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REVERE: Now, I have never been so emotionally drained in my life. Caregiving eats your soul. It's constant mourning for years.

WELLS: Jacquelyn also talks about their money troubles. They live in California, where Medicaid sometimes helps by giving full-time caregivers a stipend. Jacquelyn got one, but she has still had to rent out rooms in their house to help make ends meet. And there are so many Jacquelyns out there with few resources and almost no actual training, so they're just kind of winging it. Teepa Snow is a dementia expert.

TEEPA SNOW: We know that there are so many younger people out there dealing with one form of brain change or another in their life, and they're left hanging.

WELLS: Teepa is an occupational therapist in North Carolina who has written books about dementia care. She also has a huge following on dementia TikTok. And Teepa says Alzheimer's and other dementias can be particularly isolating. Sometimes it feels to a family like the medical system is essentially saying, hey; your loved one has this type of dementia. There's no cure. Eventually, it's fatal. Good luck.

SNOW: At this point in time, if we had five families dealing with dementia, 4 out of 5 would fall apart before the disease was ended. And so that person who's chosen to be the primary, they're all alone. They're truly all alone.

WELLS: So they turn to the internet. And dementia TikTok provides community and advice, but it also helps capture how caregiving can be both tender and sad, like in one video Jacquelyn posted. They're in the sunny living room when Lynn starts calling her daughter Mommy.

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HINDMON: Mommy.

REVERE: Yes, baby. You calling me Mommy?

WELLS: Lynn goes over to a photo of the two of them on the wall. It shows Lynn as a hot '80s mom in shoulder pads, and Jacquelyn is just a chubby puffball of a baby in a lacy pink dress. Lynn correctly identifies herself in the photo but then points at the baby and says that's her mommy.

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HINDMON: Yeah, 'cause this is me.

REVERE: That's you.

HINDMON: And that's my mommy.

REVERE: Oh, that's me. So, yes, you are right. That is your mommy.

WELLS: This post has more than 8 million views, and Jacquelyn understands how powerful it is.

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REVERE: The words may be switched or maybe it's not actually, like, 'cause the roles have switched. And so maybe she's right. Maybe she's understanding exactly how it is.

WELLS: But dementia TikTok also raises an ethical question. The people with dementia in these videos, almost none of them can give informed consent to being filmed. Many of their most vulnerable moments are now being watched by millions of strangers. Beth Kallmyer is with the Alzheimer's Association.

BETH KALLMYER: If I were talking to a family member that was considering doing this, those are the questions I would pose to them is to say, would they be comfortable with this? Is there a way for you to film something that gets the idea across, but maintains their dignity?

WELLS: And it's not always so clear. Even Jacquelyn has a post of her mom that she feels conflicted about. It has 27 million views, so it's actually the most watched video on her channel.

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REVERE: So the other day I found my mom walking around with a bottle of mouthwash, and she was sipping out of it. And this is how I handled this situation. I started by trying to explain why you can't...

WELLS: Lynn had gotten past the locks on the bathroom cabinets. Jacquelyn tries to explain to her mom why she can't drink mouthwash. But Lynn doesn't want to let the mouthwash go. As many caregivers know, Jacquelyn has to keep this moment from escalating into a big fight.

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REVERE: May I have it, please, please? Thank you so much. And I'm going to replace it with something else that's going to taste even better, all right?

WELLS: Some of the comments on this post were really different from the reactions her videos normally get. Some of them called Jacquelyn's mom an alcoholic or said she looked scary. It made Jacquelyn feel protective. But in the end, she decided not to take the video down. She says it is still a good example for caregivers of redirection, showing how to steer a loved one away from a risky situation. And that's who she's making these videos for - the caregivers, not the trolls. And then this past spring, in March, Jacquelyn posted another video.

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REVERE: Hey, y'all. I just wanted to come in and tell y'all that Mommy passed. She passed on Sunday night. And that's really all I have for now. So lift us up in prayer, but Mommy is dancing in heaven now.

WELLS: Lynn had died of cardiac arrest at the age of 65. Jacquelyn had always assumed that when her mom died, she'd have to mourn her alone. But on TikTok, the messages poured in. People were checking in on her, sending her gifts, sharing their favorite videos of Lynn.

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REVERE: It's been the least lonely that I've ever been throughout this entire experience, actually. It's not my lonely journey anymore. Now it's everyone's.

WELLS: Jacquelyn was her mom's caregiver for six years, from the age of 29 to 35. Now she's trying to figure out who she is when she's not caring for her mom. She's dating, traveling, seeing friends and grieving. But one thing she knows is she still wants to keep connecting with dementia caregivers, especially ones who don't have huge followings like she does.

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REVERE: Because that's what I needed most - just to know that life isn't passing me by and I'm not seen. I just want to make sure that they feel seen.

WELLS: Jacquelyn made hundreds of posts for the dementia community on TikTok. And she takes comfort in knowing they will always be up there for new caregivers to find and maybe feel a little less alone. For NPR News, I'm Kate Wells.

PFEIFFER: This story comes from NPR's partnership with Michigan Radio and Kaiser Health News.

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