Bruce Willis’ wife says caregiving can be very harmful to health

(NewsNation) — Emma Heming Willis received an alarming wake-up call from her husband’s neurologist: Caregivers have 63% higher mortality rates and often die before the people for whom they’re caring.

“That was a statistic that I had never heard, and it was definitely my wake up call to realize that caregiving can be really harmful to your health,” Emma said in a Tuesday interview with NewsNation’s Elizabeth Vargas.

The revelation prompted her to prioritize self-care while caring for husband Bruce Willis, who was diagnosed with dementia in 2022.

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 that affects an estimated 7 million Americans. 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.

‘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 than others 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 that 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.

“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.”

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.

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

Despite the challenges, Emma Heming Willis said Bruce Willis experiences anosognosia, a neurological condition where patients don’t realize their health decline. “It’s a blessing and the curse,” she said. “I am grateful that Bruce never tapped in to the idea that he had FTD.”

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.”

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