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Emma Heming Willis says husband Bruce’s life is still ‘filled with joy’

NEW YORK, NEW YORK - OCTOBER 11: Bruce Willis and wife Emma Heming Willis attend the "Motherless Brooklyn" Arrivals during the 57th New York Film Festival on October 11, 2019 in New York City. (Photo by Theo Wargo/Getty Images for Film at Lincoln Center)

(CNN) — Bruce Willis’ wife has hit out at an online report that “there is no more joy” in her husband’s life.

Emma Heming Willis said in a video posted to her Instagram profile on Sunday that she had been “clickbaited” by a headline “to do with my own family.”

Appearing angry and frustrated, Heming Willis said she had been “triggered” by the story, which she came across on Sunday morning.

The former model, who did not identify the publication that ran the story, said the headline was “far from the truth” and that, in fact, the reality was “the complete opposite of that.”

“A hundred percent there is grief and sadness and there is all of that, but you start a new chapter,” she said, going on to say that it is filled with love, connection, joy and happiness.

Calling for more restraint in reporting such stories, she said: “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.”

After retiring from acting in March 2022 due to a speaking disorder called aphasia, Willis was diagnosed with frontotemporal dementia (FTD), his family announced in February last year.

FTD is a group of disorders caused by a buildup of tau and other brain cell destroying proteins in the brain’s frontal lobes (behind your forehead) or temporal lobes (behind your ears). The condition typically strikes between the ages of 45 and 64, according to Alzheimer’s Research UK.

In an interview last year, Heming Willis admitted that the diagnosis had been tough on her husband, herself and their two daughters. Willis also has three older daughters with his former wife, actress Demi Moore.

“What I’m learning is that dementia is hard,” Heming Willis told Hoda Kotb on the Today show on NBC. “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.”

That said, in a written message accompanying her video, Heming Willis explained that there was a lot more to the family’s situation than many headlines suggest.

She wrote: “My experience is that two things can be true and exist at the same time. Grief and deep love. Sadness and deep connection. Trauma and resilience. I had to get out of my own way to get here but once I arrived, life really started to come together with meaning and I had a true sense of purpose. There is so much beauty and soulfulness in this story.”

She described such reports about “neurocognitive disease” as “misinformation,” adding: “I’m not even talking about my family, I’m used to the craziness of these farfetched headlines and stories. I’m just talking about baseline dementia awareness and what’s being fed to the public.”

In a separate interview last year, Willis’ daughter Tallulah, from his marriage to Moore, said the family was keen to “spread awareness about FTD.”

“If we can take something that we’re struggling with as a family, individually, to help other people, to turn it around, to make something beautiful about it – that’s really special for us,” she said on the “Drew Barrymore Show.”