Bruce Willis doesn’t know he has dementia, wife says it’s a ‘blessing’

(NewsNation) — Emma Heming Willis is breaking her silence about husband Bruce Willis’ frontotemporal dementia diagnosis and the challenges of caring for one of Hollywood’s most beloved actors while raising their two young daughters.

The 69-year-old “Die Hard” star was diagnosed with FTD in 2022, bringing sudden attention to a little-known disease affecting an estimated 7 million Americans living with dementia. By 2060, new dementia cases are expected to double to 1 million annually.

In an interview with NewsNation’s Elizabeth Vargas, Emma Heming Willis discussed her New York Times bestselling book, “The Unexpected Journey: Finding Strength, Hope and Yourself on the Caregiving Path,” which offers guidance she wishes she’d had three years ago.

Emma Heming Willis said her husband experiences anosognosia, a neurological condition in which patients don’t recognize their own health decline.

“I am grateful that Bruce never tapped into the idea that he had FTD,” she said. “If Bruce had said, ‘Emma, I think something’s wrong with me. I’m scared,’ that would have been really distressing.”

Unlike Alzheimer’s, FTD affects the frontal and temporal lobes, controlling behavior, language and communication. Bruce Willis still recognizes his family.

“We don’t need words,” Emma Heming Willis said. “We have a very deep connection, and we have learned to sort of meet him where he’s at and just be supportive and be able to just love him.”

Bruce Willis diagnosed with frontotemporal dementia in 2022

FTD is the most common form of dementia in people younger than 60, affecting social behavior, language and communication rather than memory. Bruce Willis was diagnosed with primary progressive aphasia, a variant that impacts language and communication abilities.

“I think all things considering, I think that he’s doing OK with a really unkind disease,” Emma Heming Willis said. “He communicates. It’s just in a different way that we have learned to adapt to.”

The first symptom she noticed was Bruce Willis’ childhood stutter returning: “Never in my wildest dreams would I think that was now becoming a symptom of FTD,” she said.

Bruce Willis now lives separately to protect young daughters, wife says

Emma Heming Willis revealed that Bruce Willis now lives in a separate house, a decision she called one of the hardest she’s ever made.

With young children at home, she said she needed to make the best and safest decision for both her husband and their daughters, who were 8 and 10 when their father was diagnosed.

“Bruce wouldn’t want our children’s lives to be clouded by his diagnosis,” she said, adding that she hopes her transparency supports other caregivers facing similar difficult decisions.

‘Caregiving is not a solo mission’: Bruce Willis’ wife’s message to 63M Americans

A neurologist told her that caregivers have 63% higher mortality rates and often die before those for whom they’re caring. The revelation became her wake-up call to prioritize self-care.

“What I really needed was the permission to be able to ask for help,” Emma Heming Willis said. “Caregiving is not a solo mission, and this narrative needs to be changed.”

She said more than 63 million Americans are caregivers with little to no support, and experts say caregivers wait too long to ask for help until their support systems collapse.

“It was definitely my wake-up call to realize that caregiving can be really harmful to your health,” she said. “That was a call for me to start taking care of myself, because I needed to see and make sure that I could sustain this journey.”

She called becoming Bruce Willis’ care partner “one of the most rewarding and transformative experiences of my life.”