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

It all changed on a Saturday night in New York City in 2016. Jacquleyn Revere was 29 years old, and headed out for the evening to attend a friend's comedy show.
She was still on the subway when her phone rang. It was a friend of her mom's, back in Los Angeles. That's weird, Revere thought. She never calls.
"And while I was on the subway, my mom's friend said, 'Something is wrong with your mom,'" Revere said. " 'We don't know what's going on, but your mom got lost driving home. What should have been a 15 minute drive, ended up taking two hours.' "
Revere flew back to L.A. At her mom's home in Inglewood, she found foreclosure notices, untreated termite damage on the porch, and expired food in the kitchen.
Her mother, Lynn Hindmon, was a devout Evangelical who worked for her local church. A slim, regal, self-declared "health nut," Hindmon was now forgetting to pay bills and couldn't remember who she was talking to on the phone. This was just a few years after Hindmon herself had moved in with her own mother, Joyce Hindmon, Revere's grandmother, after the matriarch had been diagnosed with Alzheimer's.
"My mom was taking care of her mom, who had Alzheimer's, [and] not telling anybody how hard it was or that she needed help, or that it was completely stressing her out," Revere says.
"And then it became about me coming home to be in a house with three generations of trauma, and working my way through that ... while also being afraid and young and scared and not knowing what to do."
It would take nearly a year before they got the diagnosis that confirmed what Revere already suspected: Her mother had Alzheimer's, too. Barely 10 years since Revere left home, she found herself moving back in with her mom and her grandmother — this time as their full-time caregiver.
"That first year and a half, I was just filled with fear: What if I lose the house?" Revere says. Because of the stress, she says, "I went through bouts of migraines. My hair, right in the middle, fell out completely."
"I had to figure out how to get control of all the banking, figure out the passwords, make sure the bills are paid, make sure everything's taken care of."
In 2017, her grandmother died. Revere's grief and isolation felt overpowering. Her friends in their 20s either couldn't relate, or thought she was "wallowing in pity," Revere says.
Trying to get them to understand what her daily life was like now seemed impossible. "I just wanted to find people I didn't have to explain everything to," she says.
Revere even tried a support group for caregivers, an hour's drive away. But the other attendees were decades older, and had more financial resources. "[They] would say 'And now I have to take equity out of our house,' or 'I'm thinking of reaching into our 401k.' And then I would tell my story, and people would be looking at me like ... a charity case, or like my problem is unsolvable. ... If anything, I left and I just felt worse."
But these days Revere no longer feels so alone. In fact, she's a celebrity of sorts on TikTok, at least among the hundreds of thousands of people who post about dementia and the difficulties of caring for a loved one with the disease.
Over the past few years, Revere's account, @MomofMyMom, has become wildly popular, with more than 650,000 followers. Many of her most ardent fans have told her that they feel like they personally know her and her mom. Revere has both found a supportive community, and helped build one.
Caregivers for people with dementia have flocked to social media, but TikTok has been an especially helpful platform. Content with the hashtag "dementia" has already racked up more than 4 billion views on TikTok, as younger generations, already accustomed to sharing their lives online, now find themselves caring for aging loved ones — often with little preparation and no idea how to actually do that.
The "unmet need"
Alzheimer's disease is the most common form of dementia, but other forms include vascular dementia, mixed dementia, dementia with Lewy bodies, and frontotemporal dementia, according to the CDC. Nearly all forms of dementia get worse over time, and there is no cure, although there are some treatments.
The task of caring for people with dementia usually falls on family members. Every year, an estimated 16 million Americans provide more than 17 billion hours of unpaid care for family or friends suffering from Alzheimer's disease or other dementias, according to the CDC. About two-thirds of these caregivers are women.
"Here in the United States, unfortunately, there is not a very strong system of paid support for people with dementia," says Elena Portacolone, an associate professor who studies aging and cognitive impairment at UCSF's Institute for Health & Aging. "And so the most common way of supporting persons with dementia is the daughter."
Like Revere, many of the women who become caregivers end up having to quit their jobs. They often now find themselves financially vulnerable and "extremely isolated," says Portacolone. "So like Jacquelyn [Revere], the unpaid caregiver of her mother for six years, they are left to their own devices."
Another expert, Teepa Snow, agrees that too many caregivers are struggling. Snow is an occupational therapist in North Carolina, and runs a company offering training for caregivers of people with Alzheimer's and related dementias. "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," she says.
If Revere is the older sister everyone on dementia TikTok wishes they had, then Snow is their patron saint. Her own how-to videos about practical, compassionate caregiving rack up millions of views. "TikTok is where people are expressing an unmet need," she says.
Because there's no cure for Alzheimer's or dementia, the medical community often treats dementia the way previous generations of practitioners treated cancer — like "a big black box," Snow says. Decades ago, when people got cancer, "we didn't say anything, we didn't talk about it. We said, 'Oh gosh, that's horrible.' And people were like, '...How long have they got?' "
And while cancer is still a devastating diagnosis to receive, the medical community is more likely to respond by creating "a therapeutic alliance with the patient and the family," says Portacolone, the UCSF professor.
But families of Alzheimer's patients often report feeling like the medical system simply hands them an Alzheimer's diagnosis, tells them there's no cure, and essentially shows them the door. "[They'll say] 'You know, there's really not a lot we can do,'" Snow explains. " 'You could read this book about the origin [of dementia.]' It's like, the last thing I need is another book to read."
What family members need from the medical system, Snow says, is more understanding of symptoms and how to handle them, more help setting up long-term support systems, and knowledge about how patients can be helped by changes to their diet, sleep, exercise and lifestyle.
All too often, however, caregivers are left to muddle through and figure out the complex tasks of keeping a patient safe. 'That's pretty lonely," Snow says. "And that's so common. And 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 just chosen to be the primary [caregiver], they're all alone. They're truly all alone."
Caregivers for people with dementia have been reaching out to one another for years, holding local in-person support groups or joining mega-groups on Facebook. There's also no shortage of websites or books about the disease and the burdens of caregiving.
But the COVID pandemic disrupted or closed down many of those supports, such as in-person groups, or the adult daycare center that Revere's mom had been attending five days a week. During lockdown, Revere noticed her mom's condition started deteriorating. Desperate to keep her stimulated, and to find some kind of social connection for herself, Revere did what so many others did during COVID: She got on TikTok.
A single TikTok post of Snow's can rack up millions of views. That's because dementia TikTok, she says, is where "people are expressing an unmet need."
Using TikTok feels like being submerged in an infinite torrent of videos — most about a minute long. But the short video format has attracted caregivers, who find they can document and share the vivid, daily moments of their homebound worlds in ways that would be less visceral on more text- or photo-centric platforms.
'How many of us are on here?'
Just as you can watch videos showing World Cup highlights, you can also watch a woman's "day in the life" video of caring for her husband with early-onset Alzheimer's.
Or, perhaps, watching one of Revere's @MomofMyMom posts from 2020, which walks viewers through their bath routine.
"It's bath day," Revere says at the start of the post, while still lying in bed. "I try my best not to make this an emotionally draining experience," she sighs. "So let's begin."
Giving someone with dementia a bath can be difficult, or even 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 try to physically fight their caregiver.
But Revere has created a soothing and predictable routine for her mother Lynn. At the time of this video, Lynn Hindmon is 63, and it's about five years after her Alzheimer's diagnosis. She's not speaking much.
But in this video, Lynn Hindmon is still gorgeous: tall and regal, with great cheekbones. She still loves to pick out her own clothes, and on this day she's wearing neon blue leggings and a purple beanie hat. She's put on gold hoops and pink lipstick.
Revere starts off by promising her mom a present — which she'll get after the bath.
"We're going to get you some new lipstick. All right, let's start." Revere walks her audience through the process — sharing what works for them. She turns on some soul music, plugs in the space heater, puts the dog outside and lays out all her mom's clothes. "Lure her into my cave," she says, as her mom enters the bathroom.
The video then cuts to after the bath is over: Hindmon is dressed again, and mother and daughter are celebrating with a dance party in the bathroom.
"We dance and we dance and we dance," Revere narrates. "And when we're done, she gets a gift." At last, Revere brings out the promised gift: a sleek black tube of lipstick.
"I have a present," Revere tells her mom. Hindmon beams, but struggles to open the cap. "Here you go, it's open," Revere reassures her. "I opened it for you."
Revere could not believe this video, of their regular bath routine, got more than 20,000 views. Hundreds of people left comments, saying how they can relate. One comment read: "My mother-in-law passed a year ago this week. This was the most frustrating part of caring for her. Devoted a whole day to getting this done). Another commenter told Revere "God Bless you! I know it's hard. I see you and send so much love your way."

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