LOS ANGELES — Emma Heming Willis is arguably the country's most famous caregiver right now. She's talked at length about her husband Bruce Willis's frontotemporal dementia (FTD) diagnosis and how it twisted and tangled her happy life into something devastating.
On a recent rainy day in Los Angeles, though, Heming Willis' demeanor is hardly as dreary as the weather. Her casual black top and jeans conveys calmness and comfort. Someone who doesn't care what you think, and wants to make the most of the time she (and her husband) have left. For now, her movie star husband is in a stable place. The fear of what's next lingers anyway.
"That is the the anxiety, right? Like, when will the next shoe drop? But I know that when/if it does, we'll be ready," she tells USA TODAY at the EndWell Summit, a conference on death and dying for caregivers, clinicians and grief advocates.
FTD is the name for a group of brain disorders that occur due to frontal and/or temporal lobe decline. About 50,000 to 60,000 people have FTD in the United States and it causes personality changes, can lead to speech problems and is incurable. People live for about seven to 13 years after symptoms start; Willis was diagnosed in 2023.
