How Emma Heming Willis Dealt With Bruce Willis’ Dementia Diagnosis (Exclusive)

When Bruce Willis was diagnosed with frontotemporal dementia (FTD) in 2022 at age 67, his wife Emma Heming Willis felt wholly unmoored.

“Early on, I was very isolated. I was too scared to say anything to anyone,” Emma tells PEOPLE of initially navigating Bruce’s disease on her own, while trying to protect his privacy and parent their kids Mable, now 13, and Evelyn, 11. “I was in so much sadness and darkness for so long.”

By the time Bruce was diagnosed — first with aphasia, a vague communication disorder that affects a person’s ability to process or express language, in early 2022, and then with FTD that November — Emma, 49, was already a full-time caregiver.

“I think for most [people], by the time you get to a diagnosis, you are already in that role,” says Emma, whose home life grew increasingly chaotic as Bruce’s behavior changed, and their once-easy relationship “shifted” under the strain.

“FTD doesn’t scream, it whispers,” she says. “It’s very gray to know where Bruce stopped and where his disease kicked in … I started noticing his stutter started to come back [and] conversations weren’t really aligning anymore. It was hard to put my finger on why and what was happening.”

With an official diagnosis came a measure of comfort. “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 of the cruel reality of primary progressive aphasia, Bruce’s FTD subtype. “I just softened.”

Take PEOPLE with you! Subscribe to PEOPLE magazine to get the latest details on celebrity news, exclusive royal updates, how-it-happened true crime stories and more — right to your mailbox.

Still, Emma’s world was quietly crumbling, and the juggling act that left her isolated was unsustainable. “It felt like what was happening was only happening to us,” she says. 

Emma eventually devised a remarkable way forward for herself and her family. She sought extensive guidance from experts, found strength in community as one of nearly 12 million people in the U.S. caring for a loved one with dementia, and discovered renewed purpose in advocacy. 

“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,” she says. “FTD gets misdiagnosed all the time as bipolar, midlife crisis, depression. It is just not on anyone’s radar, which is why I think coming out with Bruce’s diagnosis was so important.”

Emma’s new book, The Unexpected Journey, is a roadmap for families navigating neurodegenerative disease and shines a light on FTD, a particularly under-diagnosed form of dementia. “I wrote the book that I wish someone had handed me on the day we received the diagnosis,” she says.

A caregiver’s journey, she knows now, “is about community and connection” but it also leaves space for joy.

“While the grief and sadness and trauma is here all the time, I have learned it’s okay for me to also enjoy our life,” she says. “Bruce would want that for me and for our kids, to not wallow in the sadness of it, but also rise to it.”

Buoyed by a powerful kinship with others walking the same path, and with Bruce and their love story as her “guiding light,” Emma has turned her pain into purpose. “The only way I can get through this,” she says, “is to help someone else feel less alone.”

Never miss a story — sign up for PEOPLE’s free daily newsletter to stay up-to-date on the best of what PEOPLE has to offer , from celebrity news to compelling human interest stories.

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.