Dementia content gets billions of views on TikTok. Whose story does it tell?

This story of mine is the one I’m proudest of among everything I wrote in 2022. It’s about going viral, consent, and cognitive decline.

There’s a lot written about the huge consent issues raised by “sharenting” culture and parents who become influencers by sharing content about their kids on the internet. But a lot less is said about these very same questions at the end of life, for those with intellectual disabilities, and cognitive decline.

Here’s some of that story:

A dementia diagnosis can instantly change how the world sees someone. The stigma has a long reach, too: family and friends of those with dementia might also find that the world has retreated from them.

The internet, at its best, can help make the reality of living with dementia more visible. And for some, the internet is the only place they can connect with others going through the same thing.

But the internet isn’t always at its best. The #Dementia hashtag on TikTok has 2 billion views. Here creators produce streams of content about their experiences caring for someone with late-stage dementia. Many of the most popular videos are inspirational or educational. But among them, it’s easy to find viral videos in which care partners—a term many advocates prefer to the more commonly used “caregivers”—mock dementia patients and escalate arguments with them on camera.

Creators have not settled on the ethics of making public content about someone who may no longer be able to consent to being filmed. Meanwhile, people who are themselves living with dementia are raising their own questions about consent, and emphasizing the harms caused by viral content that perpetuates stereotypes or misrepresents the full nature of the condition.

[Read more at Technology Review]