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She was confused when Emma Heming Willis began to notice minor changes in Bruce Willis’ behavior. They always enjoyed a simple relationship and were on the same page in marriage. But long before Bruce’s frontotemporal dementia (FTD) diagnosis in November 2022, Emma knew something was wrong. She didn’t know what.
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“FTD doesn’t scream, I whisper,” she tells people in this week’s cover story. “It’s very grey to know where Bruce stopped and the illness got caught up in. I began to notice that his stud was back, but I didn’t think it was a symptom of FTD.
Unless Bruce’s brain is changing and there is no explanation for communication issues, the increased removal of Bruce was irritated and plagued by self-doubt. “I thought the reason I wasn’t working anymore was something I was doing in marriage,” she says.
Emma Heming Willis/Instagram
“It’s like you’re slamming your head against a brick wall. You just say, ‘Where does the misunderstanding come? What’s going on in our relationship?”
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Emma will come to realize that it’s not what she did. In fact, her experience differs from many of the nearly 12 million people in the United States who care for their dementia loved ones before the diagnosis becomes clear. Early onset dementia, such as FTD, is particularly overlooked and prone to misdiagnosis.
“I have heard of many other couples who have experienced this.
The official diagnosis gave Emma a measure of relief, and her dissatisfaction with Bruce disappeared on the spot. “There was a relief in understanding. ‘Oh, this was not my husband, it was that this illness was taking part in his brain,” she says. “When I heard that, I just softened.”
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Emma poured her first-hand experience as a caregiver, and everyone she collected from top experts in her new book, The Expened Journey, a roadmap for families navigating neurodegenerative diseases. She says, “I wrote that I wish someone would give it to me the day I was diagnosed.”
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