It was just two years ago that Jean Collins’s sister Kathy was diagnosed with early-onset dementia. She was 57 at the time.
With her parents Margaret and John, and her sister Jean by her side, caring for her daily, as well as her daughter Emily also collaboratively involved in her care, Kathy has a good solid support network here in the Cowichan Valley.
She and Jean also have a little secret. They’ve got almost 80,000 TikTok followers.
The sisters’ videos are a light-hearted, funny, and raw look at life with early-onset dementia and they will continue until Kathy’s capacities diminish.
“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,” said Jean.
The family can thank COVID-19 for getting them hooked on the social media megalith that is TikTok.
“In the midst of pandemic and being bored out of our minds, we downloaded the TikTok app,” Jean added. “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.”
While the sisters were pleased to be getting such a big audience to raise some awareness about Alzheimer’s, they did not expect what came next.
“Recently, a TikTok exploded on the app — over five million views — of a family yelling, swearing and mocking a family member with Alzheimer’s,” Jean said.
What’s more, her sister Kathy stumbled across the post and was very upset by it.
“We both truly feel that when people know better, they DO better,” Jean said. “Kathy’s mission is to spread awareness and support for people and their families who are struggling with this dreaded diagnosis.”
Jean said caring for a person with dementia is not at all easy, so she feels for the people in the viral video.
“God bless them,” she added. “I’m sure they love their mom and they’re doing their best, but they’re doing it wrong.”
Given Cowichan is a small community and the already limited resources are further strained by the COVID-19 pandemic, “for the most part, unless someone’s in long term care, for the most part people are being cared for by family members.” Jean said.
If the dynamic duo can have one message sink in, it’s this: “When you’re interacting with people with dementia, it’s to keep things calm and cool and contented.”
Get to know Kathy and Jean by visiting https://www.tiktok.com/@thekathyproject. You don’t need a TikTok account to view their page.