Emma Heming Willis shares what she has learned in the months since revealing the actor’s battle with frontotemporal dementia
Bruce Willis and wife Emma Heming Willis attend the premiere of “Motherless Brooklyn” in 2019. / ANGELA WEISS/AFP VIA GETTY IMAGES
By Jennifer Ortiz, & Nancy Kerr, AARP Published August 30, 2023 / Updated November 14, 2023
Emma Heming Willis is well aware that as caregiver for husband Bruce Willis amid his battle with dementia, she has resources that other caregivers don’t.
But it’s that advantage that makes her want to raise awareness on “behalf of those families who don’t have the time, energy, or resources to advocate for themselves.”
The 45-year-old wife of retired movie star Bruce Willis, 68, writes in a guest essay for Maria Shriver’s newsletter, The Sunday Paper, about this and other hard-fought lessons since the family announced the Die Hard actor was diagnosed with frontotemporal dementia in February 2023.
“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 writes. “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 notes that it is a critical time for research into FTD, a disease with no cure or treatment. “The first disease-modifying treatments for FTD are in clinical trials right now, actively recruiting participants,” she writes. “Now is the time for our community to take action to end this disease.”
This is not the first time the former model and mother of two has shared the painful realities of caregiving for a loved one with dementia to raise awareness of the disease.
During a recent interview on Today, with Susan Dickinson, CEO of the Association for Frontotemporal Degeneration, Heming Willis bluntly said, “Dementia is hard. It’s hard on the person diagnosed, it’s also hard on the family. And that is no different for Bruce or myself or our girls. When they say this is a family disease, it really is.”
Asked by interviewer Hota Kotb if the actor is aware of his condition, Heming Willis said, “It’s hard to know.”
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 the actor in 2009 and calls herself his “care partner,” said that 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.”
The couple’s two daughters are Mabel Ray, 11, and Evelyn Penn, 9. Bruce also has three daughters with his ex-wife, actress Demi Moore: Rumer Glenn, 35, Scout LaRue, 32, and Tallulah Belle, 29.
Heming Willis has also 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.
“I don’t want it to be misconstrued that I’m good,” she said in an Instagram video in August. “Because I’m not. I’m not good. But I have to put my best foot forward for the sake of myself and my family.” Heming Willis 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.
“It’s important for care partners to look after themselves so that they can be the best care partner for the person they’re caring for,” Heming Willis said on Today.
Editor’s note: This article was originally published on Aug. 30, 2023. It has been updated to reflect new information.
Jennifer Ortiz is an associate editor at aarp.org. She previously covered personal finance, careers and other consumer topics as an editor at U.S. News & World Report and was a news writer and editor at WTOP News in Washington, D.C.
Nancy Kerr is a senior writer and editor of features content for AARP. Previously, she was the editor of special projects for USA Today; a senior editor for the USA Weekend magazine; an assistant managing editor of digital content at The Washington Post and the director of women’s programming at America Online.
