Caring for her husband has left her family “constantly in a state of grief,” Emma Heming Willis says — and the model and dementia awareness advocate wants journalists to describe the disease accurately. Heming Willis, 50, discussed the retired actor Bruce Willis’ frontotemporal dementia (FTD) with Hello! magazine in an interview published on Monday, September 7, 2026.

“It is extremely difficult and painful,” Heming Willis said. “It’s natural, we all want our loved ones to be healthy, full of life and being the person they always were. But FTD is a devastating illness that steals things from you very slowly.”

Bruce Willis, 71, was born in Idar-Oberstein, West Germany, and built a Hollywood career on the comedy-drama series “Moonlighting” and the “Die Hard” franchise. His family, announcing his retirement from acting in March 2022, said a diagnosis of aphasia — a condition that impairs a person’s ability to communicate — was behind the decision. Roughly a year after that, in February 2023, they reported that the illness had progressed and that frontotemporal dementia was the diagnosis doctors had reached.

Heming Willis has also spoken about anosognosia, a feature of the condition that can prevent someone from recognizing the changes happening to them. It should not automatically be mistaken for denial, she said — a distinction that has required the family to adjust how they communicate with him and how they care for him.

What She Wants Reporters to Understand

Heming Willis pointed to what she called the “immense lack of information” about dementia. Nearly everyone she meets leads with the same question — does her husband still remember her — a pattern she called “really eye-opening.”

“My answer is always a resounding yes. Bruce doesn’t have Alzheimer’s. He has frontotemporal dementia, which affects a completely different part of the brain,” she said.

The difference is a clinical one. Alzheimer’s disease usually erodes memory first, while FTD takes hold in the brain regions that govern behavior, personality and language, according to the Association for Frontotemporal Degeneration. Degeneration of the frontal and temporal lobes of the brain drives a whole family of neurodegenerative disorders grouped under the FTD label, rather than any single illness.

“I wish they’d inform themselves about the different types of dementia and learn to report on them accurately, educating the public rather than feeding fear and stigma,” she said.

In an episode of MS NOW’s “Because We Care with Richard Lui,” Heming Willis said Bruce Willis remains “very present” and that the family continues to experience many beautiful moments together. Too much of the public conversation about dementia, she said, is weighted toward loss.

Shame and stigma have surrounded dementia for decades, she said, and that is why the misunderstandings persist; she cited an estimate that cases will triple by 2050. She has campaigned for dementia awareness and research since announcing her husband’s diagnosis in February 2023, and on September 9, 2025, she published a memoir about caregiving, “The Unexpected Journey: Finding Strength, Hope, and Yourself on the Caregiving Path.” Readers put it at No. 2 on the New York Times Best Seller list in the Advice, How-To & Miscellaneous section when it debuted on September 28, 2025.

Returning to the happiest years was among the hardest parts of writing it, she told Hello! magazine. “It’s just too painful to look back at that time that was so full of fun, laughter and tremendous joy. It hurts to think back to that time.” She added: “Writing that first chapter forced me to remember and to dive deeply into the details of why I fell madly in love with my husband.”

Heming Willis has moved Bruce Willis into a separate single-story home near the family’s main residence, a house designed for his needs that allows round-the-clock care. She has since defended that decision against online backlash, saying it was “the safest and best decision” for Willis and their two young daughters.

Bruce Willis’ Five Daughters

The couple married in 2009 and have two daughters, Mabel Willis, 14, and Evelyn Willis, 12. His ex-wife, Demi Moore, shares three adult daughters with Willis: Rumer Willis, 38, Scout Willis, 35, and Tallulah Willis, 32.

Every one of the five has shown up for their father, Heming Willis said, and each has a bond with him that is hers alone. No two sisters are alike, she said, but those relationships rest on the same footing, because Willis was a dependable and unwavering figure throughout their childhoods.

Her younger daughters see it play out day to day, she said, as relatives and friends close ranks around him. Steering children through a serious illness calls for careful judgment, she said, though the lesson she thinks they are picking up at home is one of loyalty, devotion and unconditional love. Her resilience has been on display for them, she added, and so have her hardest moments; guilt as a caregiver is something she still wrestles with as she works through the experience while it unfolds.

A dementia diagnosis does not switch off a person’s life, she said, and she calls the picture of unbroken misery a myth. Small pleasures have always mattered to her family, and that habit has served them best on this path, leaving room for humor and connection. When the family laughs, she said, they laugh with her husband, never at him.

A Photograph From His Daughter’s Wedding

Tallulah Willis married Justin Acee on August 8, 2026, at the family’s home in Idaho. Bruce Willis did not walk his daughter down the aisle, but the two shared an embrace moments before she said “I do.” A black-and-white photograph from the celebration ran in Vogue, showing Willis with an arm around Tallulah and holding Acee’s hand as his daughter leaned into his shoulder.

The caption from Tallulah Willis read: “A tender moment with my dad, Bruce Willis, and Justin at the start of the wedding weekend.”