The first time Jacquelyn Revere walked into a support group for caregivers of family members with dementia, she felt completely out of place. Revere, then a 20-something who’d just moved from New York City to California to care for her mother and grandmother who both have dementia, was decades younger than anyone else in the room.
“People were talking about, you know, pulling equity out of their houses and their 401(k),” she says. “I ended up feeling worse. I didn’t have any of that. I had no resources.”
Revere Used TikTok to Talk About Her Caregiving Experiences
TikTok is a very popular online video-sharing and social networking service, primarily used on mobile devices, that allows users to create videos from three seconds to 10 minutes long, on any topic. Other users can comment on each video, and the video creator can respond as on most social networks. TikTok was released in September 2016 and within a couple of years became one of the most downloaded apps in the United States. As of 2022, TikTok has over 3 billion downloads, and over 1 billion active users each month.
Revere, who had been active on TikTok, began posting as @momofmymom, a name that, she felt, summed up the changing dynamic between her and her mother, Lynn Hindmon. At the time, her mother could hold a conversation and consent to be filmed, and it felt to Revere as though they were running the channel together. Revere caught the eye of other young caregivers and now has more than half a million followers on TikTok, including many fellow millennials who are also caregivers and find solace and helpful hints and ideas in her videos.
Revere tries to make the content she wishes had been available to her when she was just starting out. In one video, she and her mother spend a day together, going to an outdoor exercise class and hanging out with friends in the park. In another, Revere sits in the car alone, talking emotionally about how she’s handling her mom’s deteriorating capabilities. She tries to capture her mother on camera “when she’s fresh out of the shower and her hair is done and she feels like ‘Ooh, I’m that girl,” Revere says. She’ll address most of the tougher stuff while her mother is off-screen.
As her mother’s dementia has progressed, Revere’s TikToks have become more educational. In one recent video, she solves her mother’s tendency to collect and stash paper towels and napkins. She explains why it’s important to build a support system for both you and the person you’re caring for. She also describes how she has to think carefully about how she responds in the moment to her mom’s changing cognitive abilities.
Revere posted another video on TikTok when her mother died earlier this year, after six years of living with Alzheimer’s. Revere received an outpouring of support from the community on TikTok — people who had watched her videos and connected with her and her mom. Now, Revere is posting about life after dementia caregiving, as she is figuring out who she is after years of caregiving.
How Revere’s Videos and the #Dementia Hashtag Are Helping Caregivers
The #Dementia hashtag on TikTok has over 3.2 billion views! As with most other social networking sites, hashtags are used to categorize video content uploaded to the platform so users can find it more easily. Content creators such as Revere use the #Dementia hashtag when they post videos about their experiences caring for loved ones with dementia. Many of the most popular videos are inspirational and/or educational. There are many similar hashtags that are also quite popular, such as:
- #CaregiverLife with over 500 million views;
- #AlzheimersAwareness with over 311 million views;
- #VascularDementia with over 65 million views;
- #LewyBodyDementia with over 36 million views;
- #EarlyOnsetAlzheimers with over 35 million views;
- #ParkinsonsDisease with over 25 million views;
- #HuntingtonsDisease with over 22 million views;
- #FrontotemporalDementia with over 15 million views.
All of these dementia-related videos “help care partners understand how to handle the significant challenges of helping a loved one with dementia, or simply make them feel less alone,” says Teepa Snow, a dementia expert and educator who teaches care partners and care professionals how to work with those living with dementia.
The Unmet Need and the Ethical Question
According to NPR, “(t)he 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 forms of dementia, according to the CDC. About two-thirds of these caregivers are women. And the most common person who is supporting loved ones with dementia is usually the person’s daughter.
Many of the women who become caregivers end up having to quit their jobs and often find themselves financially vulnerable and “extremely isolated,” says Elena Portacolone, an associate professor who studies aging and cognitive impairment at the Institute for Health & Aging at the University of California, San Francisco. “So like Jacquelyn [Revere], the unpaid caregiver of her mother for six years, they are left to their own devices.”
Teepa Snow agrees that too many caregivers are struggling. “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. “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.”
The short video TikTok format has attracted the unmet needs of millions of caregivers, who find it to be a useful way to document and share the daily moments of their caregiving experiences.
As helpful as the videos can be for other dementia caregivers who use TikTok, the videos raise unavoidable ethical issues involving privacy, dignity, and consent. This is because the adults featured in the videos, for the most part, haven’t given conscious consent to their most vulnerable moments being shared with millions of strangers, because of their diminishing capacity throughout the disease. Some accounts have tried to directly address the issue of consent. The @TheKathyProject, for example, was created by sisters Kathy and Jean Collins to document the impacts and evolution of Kathy’s early-onset dementia diagnosis and discusses the issue. As Revere’s mother’s dementia got worse, Revere of course couldn’t ask for consent from her mother, so she would wait at least 24 hours before posting a video, mulling over whether it is something her mother would want posted for millions to see.
If you’re a caregiver who has the TikTok app and think the caregiving videos would be helpful, be sure to check them out. For millennial caregivers, please check out my other articles on the subject.
Taking Care of Yourself and Your Loved Ones Should Also Include Planning Ahead
If you are a caregiver for a loved one with Alzheimer’s or any other form of dementia, as you are finding ways to cope with stress or learning helpful tips and ideas from resources such as TikTok, one of the greatest ways to gain peace of mind comes with planning for your future and for your loved ones. If you and/or your loved ones haven’t yet done your estate planning, or don’t have a Power of Attorney with asset protection powers, or if a loved one is nearing the need for nursing home care or is already in a nursing home, please call us to make an appointment for an initial consultation:
Fairfax Elder Law: 703-691-1888
Fredericksburg Elder Law: 540-479-1435
Rockville Elder Law: 301-519-8041
DC Elder Law: 202-587-2797
About Evan H Farr, CELA, CAP
