It all changed on a Saturday night in New York City in 2016. Jacquelyn Revere was 29 and headed out to attend a friend\u2019s comedy show. She was on the subway when her phone rang. It was a friend of her mom\u2019s, back in Los Angeles. That\u2019s weird, Revere thought. She never calls.<\/p>\n

\u201cAnd while I was on the subway, my mom\u2019s friend said, \u2018Something is wrong with your mom,\u2019\u201d Revere said. \u201c\u2018We don\u2019t know what\u2019s going on, but your mom got lost driving home. What should have been a 15-minute drive ended up taking two hours.\u2019\u201d<\/p>\n

Revere flew to L.A. At her mom\u2019s 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 church. A slim, regal self-declared \u201chealth nut,\u201d Hindmon was now forgetting to pay bills and couldn\u2019t remember whom she was talking to on the phone.<\/p>\n

\n\t<\/iframe>\n<\/p>\nRevere did not know it then, but that tough time would lead her to find \u2014 and help build \u2014 a community of caregivers who support one another on social media. TikTok has been an especially helpful platform. Content with the hashtag \u201cdementia\u201d has racked up more than <a href=\"https:\/\/www.tiktok.com\/discover\/Dementia\">4 billion views on TikTok,<\/a> as younger generations, already accustomed to sharing their lives online, now find themselves caring for aging loved ones \u2014 often with little preparation and no idea how to do it. Over the past few years, Revere\u2019s account, <a href=\"https:\/\/www.tiktok.com\/@momofmymom\">@MomofMyMom<\/a>, has become wildly popular, with more than 650,000 followers. Ardent fans have told her they feel like they personally know her and her mom.<\/p>\nIt would take nearly a year to get the diagnosis that confirmed what Revere already suspected: Her mother \u2014 still in her 50s \u2014 had Alzheimer\u2019s disease. Barely 10 years since Revere left home, she found herself moving back in to become a full-time caregiver for her mom and her grandmother, diagnosed with Alzheimer\u2019s years earlier.<\/p>\n\u201cThat first year and a half, I was just filled with fear: What if I lose the house?\u201d Revere said.<\/p>\nBecause of the stress, she said, \u201cI went through bouts of migraines. My hair, right in the middle, fell out completely.\u201d<\/p>\n\u201cI 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\u2019s taken care of.\u201d<\/p>\n<figure class=\"wp-block-image alignwide size-full\"><figcaption>Photos of Jacquelyn Revere as a child hang in the home of her mother, Lynn Hindmon. In one video on her TikTok channel, <a href=\"https:\/\/www.tiktok.com\/@momofmymom\" target=\"_blank\" rel=\"noreferrer noopener\">@MomofMyMom<\/a>, Revere says seeing the pictures prompted Hindmon to call her \u201cMommy.\u201d (Lauren Justice for NPR)<\/span><\/figcaption><\/figure>\nIn 2017, her grandmother died. Revere\u2019s grief and isolation felt overpowering. Her friends in their 20s either couldn\u2019t relate or thought she was \u201cwallowing in pity,\u201d Revere said.<\/p>\nTrying to make them understand what her daily life was like now seemed impossible. \u201cI just wanted to find people I didn\u2019t have to explain everything to,\u201d she said.<\/p>\nRevere tried a support group for caregivers, an hour\u2019s drive away. But the other attendees were decades older and had more financial resources. \u201c[They] would say, \u2018And now I have to take equity out of our house,\u2019 or \u2018I\u2019m thinking of reaching into our 401(k).\u2019 And then I would tell my story, and people would be looking at me like \u2026 a charity case, or like my problem is unsolvable. \u2026 I just felt worse.\u201d<\/p>\nThese days Revere no longer feels so alone. She\u2019s a celebrity of sorts on TikTok, at least among the hundreds of thousands of people who post about the difficulties of caring for a loved one with dementia.<\/p>\nDaughters Are Often Dementia Caregivers<\/strong><\/p>\nAlzheimer\u2019s is the most common form of <a href=\"https:\/\/www.cdc.gov\/aging\/caregiving\/alzheimer.htm\">dementia<\/a>. Others include vascular, Lewy body, frontotemporal, and mixed dementia, says the Centers for Disease Control and Prevention. Nearly all forms worsen over time, and there is no cure, although there are some treatments.<\/p>\nThe 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 relatives or friends suffering from Alzheimer\u2019s disease or other dementias, <a href=\"https:\/\/www.cdc.gov\/aging\/caregiving\/alzheimer.htm\">according to the CDC<\/a>. About 60% of these caregivers are <a href=\"https:\/\/www.alz.org\/alzheimers-dementia\/what-is-alzheimers\/women-and-alzheimer-s\">women<\/a>.<\/p>\n\u201cUnfortunately, there is not a very strong system of paid support for people with dementia,\u201d said <a href=\"https:\/\/profiles.ucsf.edu\/elena.portacolone\">Elena Portacolone<\/a>, an associate professor who studies aging and cognitive impairment at UCSF\u2019s <a href=\"https:\/\/nursing.ucsf.edu\/academics\/departments\/institute-health-aging\">Institute for Health & Aging<\/a>. \u201cAnd so the most common way of supporting persons with dementia is the daughter.\u201d<\/p>\nLike Revere, many of the women who become caregivers end up quitting their jobs. They often find themselves financially vulnerable and \u201cextremely isolated,\u201d said Portacolone.<\/p>\nAnother expert, Teepa Snow, said too many caregivers are struggling. Snow, an occupational therapist in North Carolina, runs a company that trains caregivers of people with dementia. Her own how-to videos about practical, compassionate caregiving rack up millions of views. \u201cTikTok is where people are expressing an unmet need,\u201d she said.<\/p>\nBecause there\u2019s no cure for dementia, the medical community often treats it the way previous generations of practitioners treated cancer \u2014 like \u201ca big black box,\u201d Snow said. Decades ago, when people got cancer, \u201cwe didn\u2019t say anything; we didn\u2019t talk about it. We said, \u2018Oh, gosh, that\u2019s horrible.\u2019 And people were like, \u2018How long have they got?\u2019\u201d<\/p>\nWhat family members need from the medical system, Snow said, 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 dietary, sleep, and exercise habits.<\/p>\nAll too often, however, caregivers are left to muddle through the complex tasks of keeping a patient safe. \u201cThat\u2019s pretty lonely,\u201d Snow said.<\/p>\nThe covid pandemic disrupted or closed down much in-person support for caregivers, including the adult day care center Revere\u2019s mom had been attending five days a week. Desperate to find social connection, Revere did what so many <a href=\"https:\/\/www.cnbc.com\/2021\/09\/27\/tiktok-reaches-1-billion-monthly-users.html\">others did<\/a> as the pandemic stretched on: She got on TikTok. The short video format has attracted caregivers, who find they can document and share the vivid moments of their worlds at home in ways that would be less visceral on text- or photo-centric platforms.<\/p>\nYou can watch a woman\u2019s <a href=\"https:\/\/www.tiktok.com\/@alzheimerstips\/video\/7122645915071991083?is_copy_url=1&is_from_webapp=v1&q=%23dementia&t=1665435478322\">\u201cday in the life\u201d<\/a> video of caring for her husband with early-onset Alzheimer\u2019s or one of Revere\u2019s @MomofMyMom posts from 2020, which walks viewers through their <a href=\"https:\/\/www.tiktok.com\/@momofmymom\/video\/6897232172596333829?is_copy_url=1&is_from_webapp=v1&item_id=6897232172596333829\">bath routine<\/a>.<\/p>\n\u201cIt\u2019s bath day,\u201d Revere says at the start of the post, while still lying in bed. \u201cI try my best not to make this an emotionally draining experience,\u201d she sighs. \u201cSo let\u2019s begin.\u201d<\/p>\nBathing someone with dementia can be difficult, 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 fight their caregiver. Revere has created a soothing, predictable routine for her mother. At the time of this video, Hindmon is 63, and it\u2019s about five years after her Alzheimer\u2019s diagnosis. She\u2019s not speaking much. Lynn Hindmon is tall, with great cheekbones. This day she\u2019s wearing neon-blue leggings and a purple beanie.<\/p>\nRevere starts off by promising her mom a present \u2014 which she\u2019ll get after the bath.<\/p>\nRevere 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\u2019s clothes. \u201cLure her into my cave,\u201d she says, as her mom enters the bathroom.<\/p>\nThe video then cuts to after the bath is over: Mother and daughter are celebrating with a bathroom dance party.<\/p>\nThe video got more than 20,000 views. Hundreds of people left comments, saying how they can relate. One comment read: \u201cMy 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.\u201d Another commenter told Revere, \u201cGod Bless you! I know it\u2019s hard. I see you and send so much love your way.\u201d<\/p>\nRevere posted a follow-up right away:<\/p>\n\u201cHow many of us are on here?\u201d she said into the camera. \u201cI\u2019ve been, like, looking for people my age that I can relate to, who have the same experience.\u201d<\/p>\nRevere\u2019s following soared from just a couple of thousand followers to more than 650,000. Many people used the comments to talk about their own caregiving struggles. They wanted to see the little victories, like Revere\u2019s gentle, joyful tricks for getting through bath time. They also listen to Revere\u2019s candid confessions.<\/p>\n\u201cY\u2019all, I have never been so emotionally drained in my life,\u201d she shared in one <a href=\"https:\/\/www.tiktok.com\/@momofmymom\/video\/7066128169404763439?is_copy_url=1&is_from_webapp=v1&item_id=7066128169404763439\">video<\/a>. \u201cCaregiving eats your soul. It kills your spirit. It\u2019s constant mourning for years. \u2026 And it\u2019s beautiful.\u201d<\/p>\n<figure class=\"wp-block-image alignwide size-full\"><img decoding=\"async\" loading=\"lazy\" width=\"3840\" height=\"2560\" src=\"https:\/\/khn.org\/wp-content\/uploads\/sites\/2\/2022\/10\/Revere_03_3840x2560web.jpg\" alt=\"A woman holds medium-sized yellow down in her lap.\" class=\"wp-image-1572390\" srcset=\"https:\/\/khn.org\/wp-content\/uploads\/sites\/2\/2022\/10\/Revere_03_3840x2560web.jpg 3840w, https:\/\/khn.org\/wp-content\/uploads\/sites\/2\/2022\/10\/Revere_03_3840x2560web.jpg?resize=150,100 150w, https:\/\/khn.org\/wp-content\/uploads\/sites\/2\/2022\/10\/Revere_03_3840x2560web.jpg?resize=500,333 500w, https:\/\/khn.org\/wp-content\/uploads\/sites\/2\/2022\/10\/Revere_03_3840x2560web.jpg?resize=768,512 768w, https:\/\/khn.org\/wp-content\/uploads\/sites\/2\/2022\/10\/Revere_03_3840x2560web.jpg?resize=1270,847 1270w, https:\/\/khn.org\/wp-content\/uploads\/sites\/2\/2022\/10\/Revere_03_3840x2560web.jpg?resize=1536,1024 1536w, https:\/\/khn.org\/wp-content\/uploads\/sites\/2\/2022\/10\/Revere_03_3840x2560web.jpg?resize=2048,1365 2048w, https:\/\/khn.org\/wp-content\/uploads\/sites\/2\/2022\/10\/Revere_03_3840x2560web.jpg?resize=770,513 770w, https:\/\/khn.org\/wp-content\/uploads\/sites\/2\/2022\/10\/Revere_03_3840x2560web.jpg?resize=840,560 840w, https:\/\/khn.org\/wp-content\/uploads\/sites\/2\/2022\/10\/Revere_03_3840x2560web.jpg?resize=570,380 570w, https:\/\/khn.org\/wp-content\/uploads\/sites\/2\/2022\/10\/Revere_03_3840x2560web.jpg?resize=370,247 370w, https:\/\/khn.org\/wp-content\/uploads\/sites\/2\/2022\/10\/Revere_03_3840x2560web.jpg?resize=270,180 270w, https:\/\/khn.org\/wp-content\/uploads\/sites\/2\/2022\/10\/Revere_03_3840x2560web.jpg?resize=170,113 170w, https:\/\/khn.org\/wp-content\/uploads\/sites\/2\/2022\/10\/Revere_03_3840x2560web.jpg?resize=100,67 100w, https:\/\/khn.org\/wp-content\/uploads\/sites\/2\/2022\/10\/Revere_03_3840x2560web.jpg?resize=120,80 120w, https:\/\/khn.org\/wp-content\/uploads\/sites\/2\/2022\/10\/Revere_03_3840x2560web.jpg?resize=1170,780 1170w, https:\/\/khn.org\/wp-content\/uploads\/sites\/2\/2022\/10\/Revere_03_3840x2560web.jpg?resize=300,200 300w, https:\/\/khn.org\/wp-content\/uploads\/sites\/2\/2022\/10\/Revere_03_3840x2560web.jpg?resize=200,134 200w, https:\/\/khn.org\/wp-content\/uploads\/sites\/2\/2022\/10\/Revere_03_3840x2560web.jpg?resize=315,210 315w, https:\/\/khn.org\/wp-content\/uploads\/sites\/2\/2022\/10\/Revere_03_3840x2560web.jpg?resize=630,420 630w, https:\/\/khn.org\/wp-content\/uploads\/sites\/2\/2022\/10\/Revere_03_3840x2560web.jpg?resize=1200,800 1200w\" sizes=\"auto, (max-width: 3840px) 100vw, 3840px\"\/><figcaption>Revere\u2019s mother died in March, after six years of living with Alzheimer\u2019s. Revere received an outpouring of support from viewers of her videos on TikTok. Since then, she\u2019s been figuring out what her life will be after years of caregiving. Now she has time to devote to herself and her dog, Dewey.(Lauren Justice for NPR)<\/span><\/figcaption><\/figure>\nContent Creators Weigh Ethics of Going Public<\/strong><\/p>\nThe intimate, unvarnished depictions of dementia on TikTok have raised ethical issues surrounding privacy, dignity, and consent. There are videos on the internet of adults who haven\u2019t consented to their most vulnerable moments being shared with millions of strangers.<\/p>\nIn one TikTok, a woman chronicles her grandmother\u2019s aggression, filming as the elderly woman chases her through the house, fists swinging wildly. Other content creators film the verbal abuse that caregivers can experience.<\/p>\nBeth Kallmyer, vice president for care and support for the Alzheimer\u2019s Association, doesn\u2019t think the people posting these videos intend to be exploitative. \u201cYou could tell that the caregivers just felt isolated and frustrated and at their wits\u2019 end, with no resources,\u201d she said.<\/p>\n\u201cIf I were talking to a family member \u2026 considering doing this,\u201d Kallmyer said, \u201cthose are the questions I would pose to them: Would they [the person with dementia] be comfortable with this? Is there a way for you to film something that gets the idea across but maintains their dignity?<\/p>\n\u201cShould we have a video of somebody that isn\u2019t fully clothed? Or maybe [before Alzheimer\u2019s] they only went outside when they were dressed to the nines or really put together, and you\u2019ve got them in pajamas or sweatpants or whatever, and they don\u2019t have makeup on. I\u2019m not sure that\u2019s the best way to go about using TikTok.\u201d<\/p>\nRevere has a video that, in retrospect, she now feels ambivalent about posting. It\u2019s the most-watched video on her channel, with 27 million views. In it, her mother is walking around the living room with an open bottle of mouthwash. She somehow got past the locks on the bathroom cabinets.<\/p>\nLynn Hindmon thinks the mouthwash is a drink, like juice or milk. She looks frustrated and dazed as Revere tries to explain why she can\u2019t drink mouthwash.<\/p>\nWith some negotiation, Revere gets her mom to hand it over in exchange for an ice pop.<\/p>\nSome comments on that post call her mom an alcoholic, or say she looked scary. The experience made Revere feel protective \u2014 like she needed to be more careful, as she didn\u2019t want to post anything that might put her mom in a bad light. Still, after much consideration, she decided to keep the mouthwash video up. She said it\u2019s a good example of \u201credirecting\u201d away from a risk \u2014 something other caregivers would understand.<\/p>\nOn March 9, Jacquelyn Revere posted <a href=\"https:\/\/www.tiktok.com\/@momofmymom\/video\/7073244686617480491?is_copy_url=1&is_from_webapp=v1&item_id=7073244686617480491\">another video<\/a> on TikTok, letting her followers know her mother had died. She was 65.<\/p>\nOn TikTok, the messages of surprise and condolence poured in.<\/p>\nRevere, an only child, had always assumed that when her mom died she\u2019d mourn her alone. Instead, people were checking in on her, sending her gifts, sharing memories of their favorite videos of Hindmon.<\/p>\n\u201cIt\u2019s been the least lonely I\u2019ve ever been throughout this experience, actually,\u201d she said.<\/p>\nRevere has continued to post on @MomofMyMom, talking about what it feels like to miss her mom, and to mourn the life she didn\u2019t live while she was caring for her.<\/p>\nNow she has time to go on dates, get a pedicure, or drive by the ocean.<\/p>\nAfter six years of caring for her mom, starting when she was just 29, Revere is now trying to figure out who she is now \u2014 and what she wants. She knows she wants to stay connected with dementia caregivers.<\/p>\n\u201cI just want them to know that they\u2019re being thought about,\u201d Revere says. \u201cBecause that\u2019s what I needed most. Just to know that life isn\u2019t passing me by, and I\u2019m not seen.<\/p>\n\u201cI just want to make sure that they feel seen.\u201d<\/p>\nThis story is part of a partnership that includes\u00a0<a href=\"https:\/\/www.michiganradio.org\/\" data-type=\"URL\" data-id=\"https:\/\/www.michiganradio.org\/\">Michigan Radio<\/a>,\u00a0<a href=\"https:\/\/www.npr.org\/\">NPR<\/a>,\u00a0and KHN.<\/em><\/p>\n<aside class=\"meta-authors meta\">\n\t\t\t\t\t\t\t\t<\/aside>\n<section class=\"block--category-tag-list \">\n<div class=\"category-tag-list__content-wrapper\">\n<h3 class=\"block--category-tag-list__title\">\n\t\t\t\tRelated Topics\t\t\t<\/h3>\n\t\t\t\t<a class=\"category-tag-list__contact-link\" href=\"https:\/\/khn.org\/contact-us\/\"> \n\t\t\tContact Us\t\t<\/a> \n\t\t<a class=\"category-tag-list__tip-link\" href=\"https:\/\/khn.org\/tips\/\"> \n\t\t\tSubmit a Story Tip\t\t<\/a>\n\t<\/div>\n<\/section><\/div>\n","protected":false},"excerpt":{"rendered":"It all changed on a Saturday night in New York City in 2016. Jacquelyn Revere was 29 and headed out to attend a friend\u2019s comedy show. She was on the subway when her phone rang. It was a friend of her mom\u2019s, back in Los Angeles. That\u2019s weird, Revere thought. She never calls. \u201cAnd while […]<\/p>\n","protected":false},"author":1,"featured_media":274,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[7],"tags":[],"class_list":["post-273","post","type-post","status-publish","format-standard","has-post-thumbnail","category-aging"],"_links":{"self":[{"href":"https:\/\/healthynewsusa.com\/index.php?rest_route=\/wp\/v2\/posts\/273","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/healthynewsusa.com\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/healthynewsusa.com\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/healthynewsusa.com\/index.php?rest_route=\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/healthynewsusa.com\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=273"}],"version-history":[{"count":1,"href":"https:\/\/healthynewsusa.com\/index.php?rest_route=\/wp\/v2\/posts\/273\/revisions"}],"predecessor-version":[{"id":275,"href":"https:\/\/healthynewsusa.com\/index.php?rest_route=\/wp\/v2\/posts\/273\/revisions\/275"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/healthynewsusa.com\/index.php?rest_route=\/wp\/v2\/media\/274"}],"wp:attachment":[{"href":"https:\/\/healthynewsusa.com\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=273"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/healthynewsusa.com\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=273"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/healthynewsusa.com\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=273"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}