NEED TO KNOW
- Emma Heming Willis was initially confused when she noticed changes in husband Bruce Willis’ behavior
- “I thought it was something I was doing in our marriage that was not working anymore,” she says.
- She reflects on how she felt when she realized the changes were beyond his control
When Emma Heming Willis started noticing small changes in Bruce Willis’ behavior, she was baffled. They’d always enjoyed an easy relationship and been on the same page in their marriage. But long before Bruce’s frontotemporal dementia (FTD) diagnosis in November 2022, Emma knew something was amiss. She just didn’t know what.
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“FTD doesn’t scream, it whispers,” she tells PEOPLE in this week’s cover story. “It’s very gray to know where Bruce stopped and where his disease kicked in. I started noticing his stutter started to come back, but I never in a million years thought that was a symptom of FTD. Conversations weren’t really aligning anymore, and our relationship started to shift. It was hard to put my finger on why and what was happening.”
Unaware that Bruce’s brain was changing and absent an explanation for their communication issues and Bruce’s increasing remove, Emma grew frustrated and mired in self-doubt. “I thought it was something I was doing in our marriage that was not working anymore,” she says.
“It’s like you’re banging your head against a brick wall. You’re just like, ‘Where is the miscommunication coming? What is happening within our relationship?'”
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Emma would come to understand it wasn’t anything she had done. In fact, her experience is not unlike what many of the nearly 12 million people in the U.S. caring for a loved one with dementia go through before diagnosis brings clarity. Early onset dementias like FTD are particularly overlooked and prone to misdiagnosis.
“I have heard so many other couples that have gone through this where they just can’t figure it out (and) think it’s a marital problem, but in fact, it’s a symptom of a disease,” she says.
With an official diagnosis came a measure of relief for Emma, and any frustration with Bruce disappeared on the spot. “There was relief in understanding, ‘Oh, okay, this wasn’t my husband, it was that this disease was taking parts of his brain’,” she says. “Once you hear that, I just softened.”
Emma has poured her firsthand experience as a caregiver and all she’s gleaned from top experts into a new book, The Unexpected Journey, a roadmap for families navigating neurodegenerative disease. She says, “I wrote the book that I wish someone had handed me on the day we received the diagnosis.”
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The Unexpected Journey: Finding Strength, Hope, and Yourself on the Caregiving Path hits shelves on Sept. 9 and is available for preorder now, wherever books are sold.
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