Emma Heming Willis is opening up about the reactions she has received since speaking about her husband Bruce Willis’ frontotemporal dementia (FTD) treatment on TV.
In an Instagram post shared on Friday, Aug. 29, Emma, 47, reflected on her recent interview with Diane Sawyer in the couple’s ABC News special, Emma and Bruce Willis: The Unexpected Journey. During the interview, she revealed that Bruce, 70, now lives in a separate home for his treatment and safety.
Emma explained that she wanted to wait “a few days to sort of land and breathe” before addressing how people responded to her conversation with Sawyer.
“I think they did a beautiful job with amplifying FTD awareness, as well as shining a spotlight onto caregivers,” she said in her video. “What I knew is that by sharing some of our intimate information, we would see two camps: people with opinions and people with actual experience.”
The Make Time Wellness founder added that she expected criticism, saying caregivers are often judged harshly by people who don’t fully understand their challenges.
“That is what caregivers are up against,” she said. “Judgment from others and criticism from others.”
She closed her video with a quote from her upcoming book The Unexpected Journey: Finding Strength, Hope and Yourself on the Caregiving Path.
“Nothing changes an opinion quite as powerfully as when you have an experience,” she writes, recalling what a therapist once told her. “Even if someone is familiar with dementia or the condition you are caring for, they aren’t in your home. They don’t know how your loved one is behaving or what your family dynamic is.”
“The truth is that the opinions are so loud and noisy. But if they don’t have the experience of this, they don’t get a say, and they definitely don’t get a vote,” she added.
In her caption, Emma wrote that caregivers are often judged “quickly and unfairly by those who haven’t lived this journey or stood on the front lines of it.”
“Sharing openly may invite opinions, but more importantly, it creates connection and validation for those actually navigating the realities of caregiving every day,” she added. “That’s who I share for — so I can build a deeper connection with a community that understands this journey.”
In her ABC interview, Emma said Bruce was moved into a second home nearby “some time ago.” The one-story house allows both him and his 24-hour care team to move around safely.
The change came after Emma began limiting social activities at home, realizing that noise could worsen Bruce’s condition. She eventually stopped hosting playdates and sleepovers for their daughters.
“I didn’t know if parents would feel comfortable leaving their kid at our home,” she explained. “I isolated our whole family, and that was by design… That was a hard time.”
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Even so, Emma and the children spend plenty of time with Bruce. “We’re there a lot,” she said, adding that she visits for breakfast and dinner every day. “It’s our second home, so the girls have their things there.”
The couple married in March 2009 and have two daughters together: Mabel Ray, 13, and Evelyn Penn, 11. Emma first revealed Bruce’s aphasia diagnosis in 2022. Less than a year later, he was diagnosed with FTD, a group of brain disorders that can affect speech, motor skills, and personality.
“Bruce is still very mobile,” Emma told Sawyer. “Bruce is in really great health, overall. It’s just his brain that is failing him.”
“The language is going, and we’ve learned to adapt,” she added. “We have a way of communicating with him, which is just… a different way.”
The Unexpected Journey will be released on Sept. 9.
