TikTokers raise awareness about early onset dementia through viral clips

A number of TikTokers have gone viral for spreading awareness about early onset dementia.

In recent months, Jean Collins of Cowichan Valley, British Columbia, has shared videos of herself interacting with her sister Kathy, who is living with dementia. The sisters, who have over 76,000 followers on their account thekathyproject, didn’t think much of the social media app at the start of the pandemic, but once their videos struck a chord with users, they decided to run with it.

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“In the midst of pandemic and being bored out of our minds, we downloaded the TikTok app,” Jean told the Goldstream News Gazette. “We started making a few videos about Alzheimer’s and … she went viral! People resonated with Kathy and her account has swelled to almost 80,000 followers.”

In one recent video, Jean can be heard having a casual conversation with Kathy, who was diagnosed with dementia in 2018, about their foggy surroundings.

“So this is our world right now,” Jean tells Kathy in the clip. “Behind you is the ocean and you can’t see it. And there’s a smell in the air. Kind of dystopian, isn’t it?”

In another video, Jean gives a tour of Kathy’s art setup.

“And Kath, this is your art central here,” Jean says to her sister. “So you’ve got your drafting board. This is your PlayStation, your low-tech PlayStation.”

Jean told the Goldstream News Gazette that she and her sister intend to continue to post videos until Kathy’s capacities diminish completely.

“We feel that Kathy has an important story to share with others around this prevalent diagnosis and the best ways to support families who are coping with it,” she said.

The hope is that viewers will learn to respect those living with dementia, Jean said.

“When you’re interacting with people with dementia, it’s [important] to keep things calm and cool and contented,” she told the paper.

Similarly, Nicole Petrie, another TikToker, has grown in popularity for sharing videos of herself and her mom, who is also living with dementia. In one viral clip, Petrie, who has nearly 957,000 fans on the platform, does her own take on a trend in which parents cuddle with their toddlers as the latter group watches TV. The TikToker reverses the roles and lays next to her mother instead.

“Dementia patients are often described as being very similar to toddlers,” a text overlay reads. “Their behavior regresses and they can have tantrums, mood swings, vocabulary problems, and playfulness like that of a child.”

Still, Petrie maintains in the clip that she will cherish time with her mom for as long as they’re still together.

“Watching TV with my mom in her room are some of my favorite childhood memories and I have a feeling these will be some of my favorite memories from this time of my life too,” another overlay reads.

In an interview with In The Know, Petrie revealed that her mom was diagnosed with frontotemporal dementia (FTD) when the latter was around 50 years old.

“We had been seeing signs of the dementia for quite a few years before that,” Petrie explained. “Most doctors don’t know much about FTD, so it took a long time to get an accurate diagnosis. My family and I knew there was something wrong, but no one could tell us what or why. It was a very scary and confusing time for all of us.”

After sharing her first TikTok of her and her mom together, the social media star said she realized there was a “serious need” for more awareness surrounding FTD.

“I hope my viewers will take away an understanding [of] how FTD can affect people’s lives, that they will be inspired to have conversations around this disease and help raise awareness,” she said. “And that, together, we can build a community of people living with FTD and their loved ones / caregivers, so no one ever feels alone because of FTD again.”

*This story was updated to include comment from Nicole Petrie.

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