"No guidance, no hope, just shock" - Emma Heming Willis on how their lives changed upon Bruce's dementia diagnosis

Emma Heming Willis is still reeling from husband Bruce Willis’ neurological diagnosis. The couple were prepared for their happily ever after until it was revealed in 2022 that he was suffering from frontotemporal dementia (FTD).

On May 26, the entrepreneur, author and founder of Make Time Wellness spoke about her initial reaction to Bruce’s diagnosis at the Women’s Alzheimer’s Movement Forum in Las Vegas. According to a People report, she said:

“On the day Bruce got his diagnosis, we left the doctor's office with a pamphlet and a hollow goodbye. No plan, no guidance, no hope, just shock.”

This prompted Emma to research FTD, and in the time since, she has written a book about her experiences and advocacy when it comes to awareness about the disease that exceeds surface level information shared by doctors. The Unexpected Journey will release in September and was brought to life by the “trauma” she felt that day at the clinic with Bruce.

Emma Heming Willis’ raising FTD awareness

Emma shared intimate details of her experiences while on stage at the Las Vegas event. She said,

“The future we imagined simply vanished, and I was left trying to hold my family together, raise our two young daughters, and care for the man I love while navigating a disease I barely understood.”

She also detailed the lack of a stabilizing force when the bombshell was dropped on her and her husband, saying:

“I felt lost, isolated and scared. What I needed in that moment at that appointment wasn't just medical information. I needed someone to look me in the eye and say, ‘This feels impossible right now, but you will find your footing. You will survive this and you will grow because of it.’"

Ultimately this was an eye-opening experience for Emma, who hopes to ensure that the next person who gets this diagnosis does not feel as hopeless as she did when she first got the news. She genuinely believes that she has created a comprehensive guide for attendants who have or will go through something similar to what she did.

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“The book is the roadmap I wish someone had handed me on the day in 2022. I wrote it for other caregivers who are desperate for answers, aching for support, and wanting to be seen and wondering how they're going to make it through,” she said.

Emma also works closely with Maria Shriver, who has long shone a light on brain health through her Women’s Alzheimer’s Movement foundation.

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