Emma Heming Willis is Ending the Stigma Around Dementia

When Bruce Willis was diagnosed with frontotemporal dementia (FTD), his wife, Emma Heming Willis was handed a pamphlet and told to come back in a few months with no roadmap, no plan, and no hope.

It was a trauma that didn’t end with the diagnosis… it began there.

But Emma made a choice: instead of keeping quiet, she decided to go public. Not for the headlines, but for the families who would otherwise suffer alone.

“FTD is the most common form of dementia under 60,” she explained on The Tamsen Show podcast. “But most people haven’t even heard of it.”

By sharing Bruce’s diagnosis, Emma changed that. She started hearing from strangers who said they recognized their spouse in Bruce’s story. Some were finally able to get a diagnosis because of what she shared.

“It’s painful, but it’s also beautiful,” she said. “If calling it the Bruce Willis Disease helps raise awareness, fund research, and reduce stigma, I’d be okay with that. I think Bruce would too.”

Dementia isn’t just memory loss, it can present as personality changes, speech loss, or movement disorders. Emma worked with UCSF to create a roadmap for newly diagnosed families. She partnered with organizations like the Association for Frontotemporal Degeneration to make sure that no one walks out of the doctor’s office as unsupported as she did.

“People paint dementia in such a dark, tragic light,” Emma said. “But when the only narrative is negative, people become afraid to face it. They hide it. And when they hide it, they don’t get help.”

The more we talk about FTD, the sooner we can catch it and the more we share these stories, the faster we end the stigma.

If you want to understand what this disease really is, and how we change the conversation, listen to the full episode with Emma Heming Willis on The Tamsen Show Podcast.