Caring For a Mother with Dementia: How This TikToker Educates

Alzheimer’s educator Debra Kostiw wants to teach people how to properly care for people suffering from dementia, and she’s using TikTok to demonstrate her methods in a realistic and raw way — without exploiting a real dementia patient.

Debra Kostiw never imagined she’d be a leading voice in the world of dementia education.

After opening a home care agency with her husband nearly 20 years ago and her mother’s Alzheimer’s diagnosis around that same time, Kostiw found herself dissatisfied with the training available to those looking to learn how to care for their loved ones or patients with dementia.

“I took many, many certifications,” she tells Healthnews. “None of them showed you what to do in front of that person with dementia to get the results that you needed.”

And so she began testing her own methods — trying new techniques within her home care business and with her mom — to determine the best ways to treat dementia patients with respect and tolerance, all while managing their sometimes difficult behaviors with as much ease as possible.

She found that changing her language when dealing with dementia patients had a profound effect on how they responded and cooperated, learning that simply positioning a request or suggestion in a different way could easily produce the results she wanted.

Then, despite her uncertainties about whether she was capable, Kostiw wrote a book about her findings, and it quickly became a number one bestseller.

Following the book’s success, at the advice of someone she knew, she created a course to help teach other caregivers the techniques she’d developed. And then she took her expertise to social media and swiftly became a TikTok sensation.

“My intention is to disrupt the dementia care industry, turn it upside down,” she says, “because it's way overdue.”

Building up, not breaking down

Among the techniques that Kostiw teaches is the fundamental idea that you must build up the person with dementia, not tear them down. These are intelligent adults who now have brain damage, and they will not respond well to being treated like children, she says.

People with Alzheimer’s and dementia often don’t know they have a disease, but they do know they’re struggling. When you ask them to perform a task, and they don’t cooperate, it’s never because they’re intentionally being difficult, but rather they don’t understand or are unable to do it, she says.

Putting that person down and getting annoyed with them will only increase their frustration, leading to bigger reactions and more upset from everyone involved.

Kostiw says that as human beings, most of us are programmed to convince and persuade people when we want them to do something. But that doesn't work for a person with dementia, she explains. That part of their brain doesn't work anymore.

“We have to find alternative ways to get the message across without convincing or persuading,” she says. “And that just takes a little practice.”

When trying to get a person with dementia to take a shower, for example, telling them they simply have to likely won’t work. Instead, Kostiw suggests making it fun.

Now you’ve made taking a shower an exciting, uplifting experience, and you’ve made the person feel good about themselves.

“It's about building their self confidence and their self esteem instead of knocking them down,” she says. “How we approach and how we word things is really key.”

Kostiw provides her students with several scripts that indicate precisely how to handle common situations such as this one.

Pivoting to social media for Alzheimer's education

Kostiw knew her methods were tried and true, but when one of her peers suggested she share some of the techniques on social media, she was hesitant. She did eventually start making YouTube videos full of tips and tricks, but TikTok seemed like a whole other beast she was not ready to conquer.

TikTok was only for kids, she believed, and she wasn’t sure she could get on board with the brief, all-action style of the videos on the app. Plus, she was deterred when she found other dementia accounts that exploited real patients for views.

“I got pretty upset about that and I thought, ‘I don't want any part of that,’” she says. “But then I thought, ‘Well, if that's what the viewers want — that kind of action — maybe I can give it to them without exploiting a person with dementia.”

And so she recruited her friend Sue, a lifelong nurse, to play her mom on TikTok.

The duo began filming videos demonstrating scenarios between a mother with dementia and a caregiver daughter, offering tips for how to handle them. Many viewers initially believed they were watching real conversations in these videos, but Kostiw routinely reminds her followers that these are scripted scenes, and Sue does not really have dementia.

“As a teacher, you have to teach how people are going to learn,” Kostiw says. “So it might not be my preferred way, but if this is the way that I'm going to help the caregivers and help the person with dementia, then I'll do it. I'll do whatever I have to do to get that message out.”

Increasing empathy

In her lessons, Kostiw focuses on thoroughly explaining the experience of a person with dementia to increase empathy among caregivers.

She explains that those with dementia lose the ability to regulate their emotions and recognize familiar objects and faces.

I show them what a person with dementia sees and what they hear. People don't understand that dementia involves all the senses — it's not just memory loss — there are so many more deficits that go along with it.

As a result, she says her students naturally develop a much greater empathy for people with dementia and an understanding of what that person is experiencing in their own head.

“I think one of the biggest things that caregivers are missing is that no matter how frustrated the caregiver is, the person with dementia is about 20 times more frustrated,” she says.

Caregivers need care, too

Kostiw doesn’t deny that being a caregiver to someone with dementia is incredibly stressful and exhausting. These people often end up neglecting their own mental and physical health as a result.

“Self neglect is very common for caregivers because they are just so stretched,” she says.

That’s why she encourages her TikTok followers — the majority of whom are caregivers themselves — to take more time for themselves.

A few weeks ago, she challenged her followers to simply take one hour for themselves, whether that meant taking a bath, going for a walk, getting some ice cream, or anything else they wanted to do. They just couldn’t spend it on their phones, and they couldn’t spend it caring for someone else.

“They absolutely loved it,” she says, “and they were reporting back to me, saying, ‘I am actually doing an hour a day now, and I feel great.’”

But finding that hour when you’re responsible for someone with dementia can be challenging. That’s why she says it’s imperative that caregivers learn to ask for and accept help from others.

Oftentimes, family and friends will offer to help, but the caregiver will reject the offer because they’re not sure how they can really help, especially if they’re not experienced with taking care of people with dementia. But Kostiw suggests being very specific about the tasks you need help with, whether it be laundry, grocery shopping, cleaning the bathroom, or sitting at home while your person with dementia naps so you can get out of the house.

“Be specific about what you need help with and ask for help, because even if you unload some of those tasks, it can give you a break,” she says. “It doesn't necessarily have to mean one-on-one care with your person with dementia.”

Elder abuse

Throughout her time learning about the brain and dementia, Kostiw learned that elder abuse is shockingly prevalent among dementia patients.

In fact, research has shown that between 27.9% and 62.3% of older adults with dementia face psychological abuse, while physical abuse was estimated to affect between 3.5% and 23.1%. Kostiw at least partially attributes these statistics to a lack of knowledge and training, as well as the frustration and overwhelm so many caregivers face.

Her attempts to solve this issue span beyond education. She has also been working to pass laws in New York state to improve protections for elderly people facing abuse.

“I found out very quickly that elder abuse and Alzheimer's disease really go hand in hand, and I found out that the laws in New York state were really bad,” she says.

Ultimately, she says, the entire elder care industry needs to change, and it starts with improving staff training.

“I'm actually kind of ashamed of our whole industry and how we treat and care for people with dementia — it's disgusting and it has to change,” she says. “One day we're probably all going to be in that bed yelling, ‘Help!” and someone is going to say, ‘Don't worry, they're fine,’ but they're not fine. That person is in distress and we're ignoring them, and it has to stop.”