Emma Heming Willis Reveals How They Got Bruce’s ‘Really Traumatic’ Dementia Diagnosis (Exclusive)

The moment the neurologist told Emma Heming Willis and Bruce Willis that Bruce was suffering from frontotemporal dementia (FTD), Emma stopped processing his words. 

“I’m sure the doctor was explaining what FTD is, [but] I couldn’t hear a single thing,” she tells PEOPLE in this week’s cover story of that life-altering moment in a doctor’s office in November 2022. “I had pins and needles going through my body. My ears were wafting. I’m sure he was feeding us information but all I heard was just, ‘Check back in and here’s a pamphlet’.”

While there was relief in receiving an official diagnosis and understanding the root cause of Bruce’s troubling behavioral shifts, Emma felt unmoored with so little guidance on how to navigate next steps. “I was grateful to get to a diagnosis, but there is no cure for this disease, and being sent on our way with no support, no nothing was really traumatic,” she says. “It’s not just happening to us. This is how many people are receiving their diagnosis.”

Like so many of the nearly 12 million people in the U.S. caring for a loved one with dementia without a roadmap, Emma resorted to doing her own research. Initially, she said, “I ended up searching the web to figure out what to do.”

She describes this time as intensely isolating and “bleak.”

“Early on, life felt very dark, very one-note of just grief and sadness,” she says. Like many full-time caregivers, she felt unprepared to navigate Bruce’s progressive illness on her own, much less protect his privacy and parent their two young kids alone.

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Emma eventually forged her way forward. She sought extensive guidance from experts, found strength in community and discovered renewed purpose in caregiver advocacy. “Early on I was too scared to say anything to anyone. It felt like what was happening was only happening to us,” she says. “Over time, I realized it would be beneficial to talk about it and raise awareness so people get to the doctor sooner, can be diagnosed sooner, get into clinical trials.”

From her trauma, and after compiling extensive guidance from experts, came her empowering new book, The Unexpected Journey: Finding Strength, Hope, and Yourself on the Caregiving Path, for families and caregivers navigating neurodegenerative disease. “I wrote the book that I wish someone had handed me on the day we received the diagnosis,” Emma says.

“Caregiving is hard, and there are many people doing it with little to no support … The only way I can get through this is to help someone else feel less alone.”

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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.