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Bruce Willis’ Wife Reframes Dementia Narrative: New Chapter is Filled ‘With Love … Joy and Happiness’

Emma Heming Willis is tired of ‘clickbaity’ headlines that depict diagnosis as all doom and gloom

spinner image bruce willis smiles at wife emma heming willis on the red carpet in 2019.
Bruce Willis and wife Emma Heming Willis attend the premiere of "Motherless Brooklyn" in 2019.
ANGELA WEISS/AFP via Getty Images

Emma Heming Willis is getting candid. In a new Instagram reel, the 45-year-old wife of Bruce Willis, 68, debunked a media headline that said there was ‘no more joy’ in her life with the movie star since his dementia diagnosis. The Willis family announced the Die Hard actor’s battle with frontotemporal dementia (FTD) in February 2023.

“Now, I can just tell you, that is far from the truth,” Heming Willis said in the video. “I need society — and whoever’s writing these stupid headlines — to stop scaring people. Stop scaring people to think that once they get a diagnosis of some kind of neurocognitive disease that ‘That’s it. It’s over. Let’s pack it up. … Nothing else to see here. We’re done.’ No. It’s the complete opposite of that.”

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The former model noted that there are moments of grief and sadness. “But you start a new chapter,” she says. “And that chapter is filled … with love. It’s filled with connection. It’s filled with joy. It’s filled with happiness. That’s where we are.”

Heming Willis has been dedicated to raising awareness of the disease. She recently wrote a guest essay for Maria Shriver’s newsletter, The Sunday Paper, about the hard lessons she has learned.

“I struggle with guilt, knowing that I have resources that others don’t. When what I share about our family’s journey gets press attention, I know that there are many thousands of untold, unheard stories, each of them deserving of compassion and concern,” she wrote. “At the same time, I see that what I share matters to others who may be struggling, and in a small way makes them feel seen and understood. I want people to know that when I hear from another family affected by FTD, I hear our family’s same story of grief, loss, and immense sadness echoed in theirs.”

Heming Willis noted that it is a critical time for research into frontotemporal dementia, a disease with no cure or treatment. “The first disease-modifying treatments for FTD are in clinical trials right now, actively recruiting participants,” she wrote. “Now is the time for our community to take action to end this disease.”

FTD is the most common form of dementia in people younger than 60. Symptoms include personality changes, apathy, decision-making difficulties and speaking or language comprehension challenges. 

Heming Willis, who married Bruce in 2009 and calls herself his ‘care partner,’ told Hoda Kotb during a Today show interview for World Frontotemporal Dementia Awareness Week that finally learning her husband’s diagnosis “was the blessing and the curse. To finally understand what was happening, so that I could be into the acceptance of what is. It doesn’t make it any less painful, but just being ... in the know of what is happening to Bruce makes it a little easier.”​​​​​

They have two daughters: 11-year-old Mabel Ray and 9-year-old Evelyn Penn. Bruce also has three daughters with his ex-wife, actress Demi Moore: Rumer Glenn, 35, Scout LaRue, 32, and Tallulah Belle, 30.

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Heming Willis told Kotb her husband’s condition was teaching her young daughters “how to love, how to care, and it’s a really beautiful thing amongst the sadness.” She added,  “I don’t want there to be any stigma or shame attached to their dad’s diagnosis or any form of dementia.”

Heming Willis has been using her Instagram platform to advocate for her husband and raise awareness of brain health issues through interviews with dementia care specialists, speech language pathologists and neurologists for her audience of nearly 900, 000 followers. She has been outspoken about the role of family caregivers — calling them “unsung heroes.”

According to an AARP report, there are 48 million family caregivers in the U.S. More than 11 million Americans serve as unpaid caregivers for people with Alzheimer’s disease or other forms of dementia, according to a 2023 Alzheimer’s Association report.

Family caregivers provide day-to-day support with care tasks (such as bathing, grooming, dressing, feeding and mobility assistance) for adults with disabling health conditions, and 61 percent of family caregivers work either full- or part-time, according to an AARP report.

Find resources for caregivers on the AARP website.

Editor's note: This article was originally published on Aug. 30, 2023. It has been updated to reflect new information.

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