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      TikTok is most well-known for being a platform for young people who are incredibly open about their mental health. 

      However, it’s also a platform where thousands of creators who serve as caregivers for older patients showcase their day-to-day lives.

      The search for “dementia caregiver” has nearly 158 million posts on TikTok and produces a near endless stream of videos from creators who care for family members with Alzheimer’s or other forms of dementia. 

      The videos show their family members struggling to remember who they are, what they ate for dinner or experiencing difficult mood swings as a result of the disease.

      To be clear, this space is not without controversy. There has been some pushback against caregiver creators, with some dementia advocates arguing that they’re filming and publishing content without the patient’s consent. 

      Yet others say normalizing the struggles of caregiving on social media helps caregivers feel less alone and isolated.

      Currently, some 6 million Americans live with Alzheimer’s disease, and that number is expected to rise to 14 million by 2060, according to the Centers for Disease Control and Prevention.

      Given the critical role these individuals play in this disease state, here are some of the top Alzheimer’s and dementia caregivers on TikTok and how they connect with their audiences.

      Josh Pet

      In his TikTok bio, Josh Pet – who has nearly half a million followers – simply notes that “Betty has end-stage Alzheimer’s disease.”

      Betty, Josh’s mother, has become a TikTok celebrity after going viral in several videos. 

      In one that gained 3.7 million likes, Betty stares at herself in the mirror but doesn’t recognize who she is. She then asks her reflection, “What’s your name?” while laughing.

      @joshpet

      Betty met a new friend! #alzheimers

      ♬ original sound – JoshPet

      “Alzheimer’s is such a sad disease,” one commenter noted. “She is very sweet though.”

      “This had me smiling, laughing and tearing [up] at the same time,” another wrote.

      Josh has been sharing content about Betty’s struggle with Alzheimer’s disease for several years now and just recently posted an update noting that she’s in hospice care.

      However, he has continued to post videos throughout Betty’s decline, in spite of some pushback from viewers who say he should stop filming her. 

      In a recent update, Josh noted he and his father agreed to continue sharing videos because there are changes and they hope that when they’re approaching that stage of phase, they’d like to be able to see what it would be like.

      “We hear from so many people who are on this journey – yes, the Betty videos, she’s fun, she’s smiling, she’s happy, but it’s not always like that,” he continues. “As she declines, which is a natural part of this disease… there’s harder days and harder times. It’s not fair if we just share the smiles.”

      @joshpet

      We want to continue to share our journey, even when it’s not all sunshine and rainbows to help other caregivers who are on this path! 💜 #ENDALZ #caregiver #alzheimerscaregiver #dementiacare #alzheimersawareness #dementia #alzheimers #alzheimersdisease

      ♬ original sound – JoshPet

      Debra Kostiw

      Debra Kostiw is a dementia educator who knows firsthand what it’s like to avert disasters with patients since her own mother has Alzheimer’s.

      Kostiw has developed a large following of more than 400,000 followers on TikTok by posting educational videos explaining how to react to the mood swings and adventures of patients with dementia.

      In several videos that have gone viral, Kostiw chases after her mom after she decides to “walk to Tennessee,” or attempts to drive to the store. 

      Instead of scolding her mother or losing her cool, Kostiw gently guides her mother back inside the house without criticizing her or making her feel like she’s doing something wrong.

      @debrakostiw

      How would your life change if you became an expert, just like Debra? Take the Certified Master Dementia Strategist course. To apply, book a call at Www.answersaboutalz.org #dementia #Alzheimer #alzheimers #ENDALZ #dementiaawareness #caregiving #caregiving #LBD #ftd #vasculardementia #alzheimersawareness #braindamage

      ♬ original sound – Debra Kostiw

      “When your person has taken off, boy, you better have a plan,” Kostiw says in the video. “Don’t be like, ‘Hey, where are you going? Stop, come back with me, you have to come back inside!’ If you say things like, ‘Come back inside,’ they’re going to be like, ‘I’m an adult, I can do whatever the h*ll I want.’ So, you’re actually instigating a fight. Instead, ask if you can come along.”

      In another video, Kostiw’s mother puts a shirt on backwards. Kostiw uses it as a real life example of how to help her mother put her shirt on correctly without criticizing her.

      “Stop drawing attention to their mistakes,” she argues. “You make them feel stupid. We need to build their self-esteem.”

      Kostiw has made it her goal to support and educate caregivers about the ups and downs of dementia, and how to manage some of the difficult moments – using her real life experiences with her mother as examples.

      @debrakostiw

      You can be smarter than dementia. Join Debra for her next course beginning soon. Book a call to learn more at Www.answersaboutalz.org #alzheimersawareness #lbd #fdt #alzheimers #alzheimer #ENDALZ #Memoryloss #cognitivefunctions

      ♬ original sound – Debra Kostiw
      @debrakostiw

      This could have been deadly. This also could have ended in a MAJOR argument! Learn from my experiences. FREE Dementia downloads at Www.answersaboutalz.org #Alzheimers #alzheimer #dementia #ENDALZ #ftd #lbd #caregiver #dementiaawarenesalzheimersawarenesss #caregiver #FTD #parkinson

      ♬ original sound – Debra Kostiw

      Molly Bell Deaton

      Molly Bell Deaton has a unique perspective on caregiving because her mother was diagnosed with early onset Alzheimer’s. 

      Patients fall into this category if they’ve developed the disease before the age of 65, according to the National Institute on Aging. In rare cases, it can start as early as someone’s 30s or 40s.

      Deaton notes on her profile that her mother started showing signs of dementia at around age 55, but wasn’t diagnosed until her 60s.

      In one video that went viral, Deaton’s mother is pleasantly surprised when her daughter reminds her she’s been married for 40 years. 

      The video, which gained more than 2 million likes, drew attention to how Deaton’s mother still shows her sweet personality even though her short-term memory is gone.

      In other videos, Deaton shows what it’s like going to a virtual check-up with a neurologist, getting her mother ready for holidays and what she does for her own self-care throughout her caregiving journey.

      @mollybelldeaton

      After Mom’s neurology appt today; waiting on Dad in the lobby. Trying to keep her occupied in conversation. It always turns to Dad. She looks for him constantly. Their love is so special. 🥰 #dementia #alzheimer #caregiver #alzheimersawareness

      ♬ original sound – Molly Bell Deaton

      Teepa Snow

      For anyone familiar with the Alzheimer’s advocacy and education space, Teepa Snow is a well-known name. 

      As a dementia care specialist and occupational therapist, Snow is known for her brand and company, Positive Approach to Care.

      On YouTube and TikTok, Snow’s focus is on training caregivers how to care for people with dementia or Alzheimer’s in a positive light – through the lens of a dementia advocate.

      “I work with a lot of people with brain change,” Snow says in one TikTok video. “Whether it’s dementia, brain injury, developmental disabilities or something else – what I know is that when people’s brains change, we need to be willing to change as well.”

      Her videos aim to help people “do what you do better,” by understanding what’s working and what’s not, and what can be done about it.

      @teepasnow

      #CNA #dementia #dementiaawareness #SnowApproach #TeepaSnow #PositiveApproachtoCare #carepartner #caregiver #fyp #OT #RN #PT #slp

      ♬ original sound – Teepa Snow
      @teepasnow

      #SnowApproach #PositiveApproachtoCare #TeepaSnow Hand-Under-Hand #TaskAssistance #CarePartner #dementia #dementiaawareness

      ♬ original sound – Teepa Snow

      Mom of my Mom

      The TikTok account called “Mom of my Mom” is a reference to the creator’s experience caregiving for her mother with Alzheimer’s. 

      In a video that went viral, the creator’s mother refers to her daughter as “mommy,” seeing her as her primary caregiver.

      @momofmymom

      My heart yall💜 #alzheimer #dementia #momofmymom #caregiversoftiktok

      ♬ original sound – 💜MomOfMyMom💜

      “I learned with my dementia residents it was best to go along with what is their reality and I think that set me up to be more prepared with my mom,” one commenter noted.

      In other videos, the Mom of My Mom caregiver talks about how caregivers themselves typically face mental health struggles due to feelings of anxiety, abandonment and isolation/loneliness. 

      She encourages other caregivers to find support groups or make “caregiver friends” to help them cope.

      @momofmymom

      Have you found a good support group?

      ♬ original sound – 💜MomOfMyMom💜

      Kiley Castañeda

      Not all videos on caregiving TikTok are funny, pleasant or sweet. Kiley Castañeda, who is a caregiver for her mother with dementia, posted a video that gained 1.6 million likes that shows her mother crying in the morning because it’s often difficult for patients to handle the frustrating emotions that come with the disease.

      @kileydelia

      Rough mornings are not what I look forward to, but we have to get through them. Not every person with dementia is the same but this is what works for my mom and I. Controling my own emotions first so I can care for her is the main thing. Dont worry she was happy at the end 🫶🏼❤️ #caregiver #fyp #foryou #viral #dementia #dementiaawareness #dementiacare #alzheimer #alzheimers #mom #grwm #grwus #morningroutine #emotions

      ♬ original sound – Kiley Castañeda

      Castañeda gained nearly 600,000 followers on TikTok posting “get ready with me” videos that show her getting her mom out of bed every morning, getting her dressed and solving difficult moments by treating her with patience, kindness and calmness.

      @kileydelia

      Goodmorning from momma Cindy and I!!! She gets a shower 2 times a week the CNA comes and helps me ~ mom loves her so it makes it easier. I just put her in her robe until then! Cant wait to get the stair lift bc I think we are at that point now! Thanks for all the love and support, its so appreciated more than you guys know🩷🫶🏼 #fyp #caregiver #foryoupage #viral #foryou #dementia #dementiaawareness #alzheimers #caregiverlife #dementiacare #momsoftiktok #motherdaughter #motherlove #happy #grwm #getreadywithme #grwus #dailyvlog

      ♬ original sound – Kiley Castañeda

      Divas and Dementia

      The TikTok account Divas & Dementia, with 244,000 followers, aims to show the creator’s mother as she navigates moments through dementia. 

      “Dementia is no laughing matter but Mama is a HOOT!” the bio reads. “Embracing our new normal.”

      The creator allows her mother to address the TikTok audience in some videos as well, as she helps her mother get dressed, go for walks and change her shoes.

      @divasanddementia

      Mama is living her BEST Dementia life. 💜 #dementiacare #caregiverlife #dementia #caregiver #endalz #patience #alzheimer #mama #dementiaawareness #dementiajourney #dementiacaregiver #motherdaughter #family #memorycare #love #memorycareunit #patience #ournewnormal #seniors #newnormal #makingthebestofit #foryou #foryoupage #fy #fyp #foryourpage

      ♬ original sound – Divas And Dementia
      @divasanddementia

      #onthisday We tried to get her to go outside and walk or even for a car ride. She would not put on shoes. On this day, nothing worked! 💜 #dementiacare #caregiverlife #dementia #caregiver #endalz #patience #alzheimer #mama #dementiaawareness #dementiajourney #dementiacaregiver #motherdaughter #family #memorycare #love #memorycareunit #patience #ournewnormal #seniors #newnormal #makingthebestofit #foryou #foryoupage #fy #fyp #foryourpage

      ♬ original sound – Divas And Dementia

      @davmauralsec

      TikToker @davmauralsec went viral in 2022 after posting a video of his father with Alzheimer’s remembering how to translate phrases from Japanese into English.

      “My dad with Alzheimer’s used to speak fluent Japanese, but hasn’t remembered any for years,” the video starts out saying.

      The video, which gained 2.3 million views and thousands of comments, showed the caregiver’s father remembering how to say phrases like “Sorry” and “Do you speak English?” in Japanese. It’s an example of how memory can ebb and flow for dementia patients.

      @davmauralsec

      I cried after this, it was so amazing. So sorry to anyone if I messed up the Japanese #fyp #alzheimer #dementia

      ♬ original sound – ?

      This user has posted countless other vignettes of his father’s memory reappearing in fascinating ways. In another video, he shows his father remembering the words to Bo Burnham’s “White Woman’s Instagram.” 

      In another, his father tries to remember musical chords, showing that music can be one of the ways to trigger people’s memories.

      @davmauralsec

      Some things never change 🎶 #fyp #alzheimer #alzheimers #dementia

      ♬ original sound – ?