Consider This from NPR - #Dementia TikTok Is A Vibrant, Supportive Community

Episode Date: October 12, 2022

There are more than 16 million people in the U.S. that are caring for someone with Alzheimer's and related dementias. More than two-thirds of them are women.Caregiving can be emotionally and physically draining, as well as isolating. There are not a lot of resources available for caregivers and many are not paid. For six years, Jacquleyn Revere took care of her mom who had dementia and posted about the highs and lows on her TikTok account.Revere gained thousands of viewers and followers who could relate to her. Many of whom were also caregiving for a loved one with dementia. Michigan Public Radio reporter Kate Wells shares Revere's story and how a niche corner of TikTok became a place of community and support.In participating regions, you'll also hear a local news segment to help you make sense of what's going on in your community.Email us at [e-mail] more about sponsor message choices: podcastchoices.com/adchoicesNPR Privacy Policy

Support for NPR comes from NPR member stations and Eric and Wendy Schmidt through the Schmidt Family Foundation, working toward a healthy, resilient, secure world for all on the web at theschmidt.org. During her 20s, Jacqueline Revere was hustling in New York City. She was trying to break into comedy writing and she loved it. But those plans of becoming a comedy writer, they had to be put on hold suddenly when Jacqueline's mom started getting lost while driving home from work. She had also forgotten to pay the mortgage. You see, Jacqueline's mom had Alzheimer's. Hey, loved ones. I just wanted to say hi. By the way, I picked that name.

In this TikTok video, Jacqueline is hiding out in her car, snagging some precious time just for herself. Because of her mom's dementia, her mom can never be left alone. But today, someone else was watching her mother. So Jacqueline could run some errands all by herself and just breathe. 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. And because I'm always...

Jacqueline is now 35 years old. She's an only child and had moved back to Los Angeles in 2016 to be her mom's full-time caregiver. During the pandemic, many of the resources that support caregivers, like the adult daycare center that Jacqueline's mom went to, they shut down. There are a lot of people like Jacqueline out there taking care of a loved one with dementia. Elena Portacalone studies aging at UC San Francisco. Here in the United States, unfortunately, there is not a very strong system of support, of paid support, for people with dementia. More than 16 million people in

the U.S. are caring for someone with Alzheimer's and related dementias. More than two-thirds of those caregivers are women. And so the most common way of supporting persons with dementia is the daughter. Many, like Jacqueline, have to quit their jobs to become caregivers. And it's not usually something that they're paid to do. It can be very isolating. So to cope, Jacqueline started posting short videos to TikTok about how she and her mom were getting through the days. Like this 2020 post about how she gives her mom a bath.

It's bath day. I try my best not to make this an emotionally draining experience. So let's begin. Now, giving someone with dementia a bath is actually really difficult. They can get disoriented or feel threatened when someone takes off their clothes. They may slip and fall or try to physically fight their caregiver. But Jacqueline, she's a bath pro. Well, good morning. How are you?

Hi. That quiet hi you hear is Lynn. That's Jacqueline's mom. At this point, Lynn is 63, and it's been about five years since her Alzheimer's diagnosis. She's not speaking much, but, you know, Lynn, she's still gorgeous. She's tall and regal with these awesome cheekbones. She still loves to pick out her own clothes. Like here, she's wearing a purple beanie,

gold hoops, pink lipstick, neon blue leggings. And Jacqueline starts off by promising her mom a present, but only after the bath. We're gonna get you some new lipstick. All right, let's start. Turn on the water. Jacqueline walks her audience through the whole process, sharing what works for them.

Turn on the soul music, plug in the space heater, put the dog outside. Lure her into my cave. I'll see you guys after. Then the video cuts to after the bath. Lynn is dressed and they're celebrating with a dance party in the bathroom. We dance and we dance and we dance. When we're done, she gets a gift. And then, at last, the sleek black tube of lipstick, as promised. Lynn Beans. I have a present. Here you go. It's open. I opened it for you.

Jacqueline couldn't believe that this bath video got more than 20,000 views. The comments went nuts. People told Jacqueline how much they can relate, how they've made it through bath time with their parent or grandparent. How many of us are on here? I've been looking for people my age that I can relate to who will have the same experience. Consider this. The hashtag dementia has 3 billion views on TikTok.

For people looking after loved ones, the social media app has provided support and a strong sense of community to help weather the highs and lows. From NPR, I'm Elsa Cheng. It's Wednesday, October 12th. This message comes from WISE, the app for doing things in other currencies. Send, spend, or receive money internationally, and always get the real-time mid-market exchange rate with no hidden fees.

Download the WISE app today, or visit WISE.com. T's and C's apply. Support for NPR and the following message come from Carnegie Corporation of New York, working to reduce political polarization through philanthropic support for education, democracy, and peace. More information at carnegie.org. It's Consider This from NPR. Jacqueline was caring for her mom, their house, the bills, the doctors, and insurance, all on her own. And now, she and her mom live in California, where Medicaid sometimes helps by giving full-time caregivers a stipend. And Jacqueline got one, but she still had to rent out rooms in their house just to make ends meet. It was a lot to deal with, and for years, Jacqueline had felt so lonely.

Y'all, I have never been so emotionally drained in my life. But caregiving eats your soul. It's constant mourning for years. But you know, TikTok changed all that. People from as far away as South Africa were following her page and reaching out to her. Jacqueline went from just a couple thousand followers to 650,000. And she's not alone. Michigan Radio's Kate Wells covers public health. She picks up the story from here. Tipa Snow is a dementia expert. 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.

Tepa is an occupational therapist in North Carolina who has written books about dementia care. She also has a huge following on Dementia TikTok. Antipas' 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. At this point in time, if we had five families dealing with dementia, four out of five 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. 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 Jacqueline posted. They're in the sunny living room when Lynn starts calling her daughter mommy. Mommy? Yes, baby? Mommy. You calling me mommy?

Yeah. 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 Jacqueline 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. Yeah, because this is me. That's you? And that's my mommy.

Oh, that's me. So yes, you are right. That is your mommy. This post has more than 8 million views. And Jacqueline understands how powerful it is. The words may be switched or maybe it's not actually. Like, because the roles have switched. And so maybe she's right. Maybe she's understanding exactly how it is.

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 Kallmeyer is with the Alzheimer's Association. 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? And it's not always so clear. Even Jacqueline 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. 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... Lynn had gotten past the locks on the bathroom cabinets.

Jacqueline 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, Jacqueline has to keep this moment from escalating into a big fight. 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? Some of the comments on this post were really different from the reactions her videos normally get. Some of them called Jacqueline's mom an alcoholic or said she looked scary. It made Jacqueline 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, Jacqueline posted another video. 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. Lynn had died of cardiac arrest at the age of 65. Jacqueline 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.

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. It's not just me. Jacqueline 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. Because that's what I need 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. Jacqueline 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. That was Michigan radio reporter Kate Wells. It's Consider This from NPR. I'm Elsa Chang. Support for NPR and the following message come from the Kauffman Foundation, providing access to opportunities that help people achieve financial stability, upward mobility, and economic prosperity, regardless of race, gender, or geography. Kauffman.org.