Emma Heming Willis Shares Heartfelt Insights on Life with Bruce Willis Amid His Dementia Journey: ‘FTD Whispers, It Doesn’t Scream’

Since learning about her husband Bruce Willis’s diagnosis of frontotemporal dementia (FTD) in 2022, Emma Heming Willis has faced immense emotional challenges. In her upcoming book, The Unexpected Journey: Finding Strength, Hope, and Yourself on the Caregiving Path, Emma opens up about her journey.

Navigating her grief, Emma felt lost at first. “I was very isolated. I was too scared to say anything to anyone,” she shared in an interview with People. The sudden change in their lives was overwhelming.

Bruce, now 70, was diagnosed with primary progressive aphasia, which affects communication. By November 2022, doctors confirmed he had FTD. Emma quickly stepped into the role of a full-time caregiver. Earlier this year, she received the Caregiving Award from Maria Shriver’s Women’s Alzheimer’s Movement, recognizing her commitment to supporting Bruce.

“FTD doesn’t scream, it whispers,” Emma explained. She noticed subtle changes, like a stutter and difficulty in conversations. “It was hard to pinpoint what was happening,” she said.

Emma decided to transform her pain into purpose by advocating for awareness around FTD. According to the University of Pittsburgh Medical Center, around 50,000 to 60,000 people in the U.S. live with this rare form of dementia. Many are misdiagnosed with mental health issues because FTD is not widely recognized.

“There’s a big gap in awareness,” she mentioned. Emma wants people to understand symptoms better so they can seek help earlier. By sharing Bruce’s story, she hopes to shine a light on the struggles families face.

Her book serves as a guide for families handling similar challenges, offering the support she wishes she had received. “There’s no cure for this disease, and being sent on our way with no support was traumatic,” she reflected. Emma wrote it for others navigating the unknown.

The family, including Bruce’s ex-wife Demi Moore and their daughters, publicly shared Bruce’s diagnosis in February 2023. They expressed gratitude for support while hoping to inspire more research into this “cruel disease.” Bruce, known for his caring spirit, would have wanted to use his voice to raise awareness around issues like FTD, they stated.

Emma and Bruce married in 2009 after meeting at a gym. They blended their families, celebrating milestones together. Recently, Demi praised Emma on The Oprah Podcast, commending her dedication and strength in supporting Bruce.

Emma’s journey reflects the importance of community and understanding during challenging times. She reminds us that awareness can lead to earlier diagnoses and support for families affected by dementia.

For more information on frontotemporal dementia, visit the Association for Frontotemporal Degeneration.

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Bruce Willis, frontotemporal dementia, Emma Heming Willis, Film at Lincoln Center, Demi Moore