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Emma Heming Willis wants the media to do better on reports about her husband and their family life since his condition progressed from aphasia to frontotemporal dementia (FTD).
“It’s Sunday morning and I’m triggered,” she wrote today in an Instagram Story. “I just got click-baited. I’m just scrolling, minding my own business, and just saw a headline that had to do with my own family. The headline basically says there is no more joy in my husband. Now, I can just tell you, that is far from the truth.”
Heming Willis went further.
“I need society and whosoever is 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 is the complete opposite of that, okay?”
Heming Willis admitted that there is “grief and sadness,” but it’s not the dominant status.
“You start a new chapter and that chapter is filled — let me just tell you what it is. It’s filled with love, it’s filled with connection, it’s filled with joy, it’s filled with happiness,” she said.
Heming Willis has kept her husband’s journey documented on social media, showing him at amusement parks, atop the “Die Hard” building, and in candid shots in the home.
She blamed a lack of education in stories that displease her.
“We are being educated by the wrong people. People that have an opinion versus an experience. People that have not taken the time to properly educate themselves on any kind of neurocognitive disease. Why can I be so bold and say that? Because I see headline after headline and blurbs of misinformation. I’m not even talking about my family… I’m just talking about baseline dementia awareness and what’s being fed to the public. You wonder why anxiety and depression is up in our society. I honestly think part of it has to do with this kind of clickbait, how things are framed and pushed out to us and how we have a split second to take that information in. Man, it’ll do a number on my psyche.”
She concluded in the post’s caption, “To whom it may concern, please be mindful how you frame your story’s [sic] to the public about dementia and dig deeper. There are so many wonderful organizations and specialist within this space to reach out to so you can really do your due diligence to iron your story and content out.”
Heming Willis is working on a book for Penguin Random House’s The Open Field imprint. It is scheduled for a 2025 release.
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