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Bruce Willis’ Wife Opens Up About Dementia and Isolation: A Call for Better Awareness

Bruce Willis' Wife Opens Up About Dementia and Isolation: A Call for Better Awareness
Emma Heming Willis did an Instagram live where she opens up about dementia with Teepa Snow, who is an occupational therapist, an expert in dementia care, and the founder of Positive Approach to Care. (Photo: Getty Images)

In February, Bruce Willis‘s family told the public that he has dementia.

After being diagnosed with aphasia, Bruce Willis stopped acting last year. Willis’s condition has gotten worse, and he has now been diagnosed with frontotemporal dementia (FTD), according to a recent update from his family.

Bruce Willis' Wife Opens Up About Dementia and Isolation: A Call for Better Awareness

In February, Bruce Willis’s family told the public that he has dementia. (Photo: Getty Images)

Emma Willis Opens Up About Dementia and What it was Like to Take Care of a Person with Dementia

Friday, Emma Heming Willis did an Instagram live where she opens up about dementia with Teepa Snow, who is an occupational therapist, an expert in dementia care, and the founder of Positive Approach to Care. The two talked about the shame that comes with being diagnosed with dementia and how hard it is to understand if you haven’t been through it.

Snow brought up the backlash Emma got when she asked photographers to stop taking pictures of her husband. Emma explained that she didn’t expect them to stop taking pictures of her husband. She only asked that they do it in a polite way.

“People thought I wanted to be alone when I said that. We didn’t want to be alone. We wanted people to respect my husband’s illness”, she said as she opens up about dementia. “I think it just shows how much more people need to learn about dementia.”

Due to disease ignorance, Emma believes her request was difficult to understand.

“I guess if you’re not experiencing it or knowing it, you don’t understand it,” she opens up about dementia.

Read more: Beer could lower your risk of dementia and brain decline, if drank in moderation

One Year Following His Aphasia Diagnosis, Willis was Diagnosed with FTD

“FTD is a cruel disease that many of us have never heard of and can strike anyone,” from its statement. “For people under 60, FTD is the most common form of dementia, and because getting the diagnosis can take years, FTD is likely much more prevalent than we know.

Today there are no treatments for the disease, a reality that we hope can change in the years ahead. As Bruce’s condition advances, we hope that any media attention can be focused on shining a light on this disease that needs far more awareness and research as his wife opens up about dementia.

Bruce Willis' Wife Opens Up About Dementia and Isolation: A Call for Better Awareness

Today there are no treatments for the disease, a reality that we hope can change in the years ahead. (Photo: (iStock/Getty Images Plus)

FTD starts with one symptom and progresses. New symptoms and brain locations are affected throughout time. After diagnosis, predicting lifespan is challenging. It might range from 2 to 10 years. Survival averages 7.5 years.

FTD affects brain regions that control personality, behavior, language learning, motivation, abstract thinking, and executive function. Linguistic and behavioral alterations precede cognitive and executive function decline.

Emma opens up about dementia and she believes the lack of information arises from caregivers not discussing triggers and their experiences.

“If you could see my messages and direct messages, honest to God, you would believe the whole world has dementia,” Emma said. “So many people now are coming to me and telling me, and I even have friends now, ‘You know, my grandmother, or my so-and-so had it,’ and I’m like, ‘Why didn’t I know?’ We’re not talking about it.”

Emma said, “It is really isolating.”

“I simply holed up, and my friendship network became narrower because it was also really tough to talk about,” she said.

Emma remarked it was lonely, as she opens up about dementia. “The blessing for us to come out with our family’s statement was to have a community, and how beautiful is this community? I now have a community of helpers.”

In March, Emma said that it’s hard to celebrate birthdays and anniversaries after Willis’ diagnosis. “Our person’s evolving brain can’t notice the event anymore. As such.”

Emma, Willis, together with his five daughters, and his ex-wife, Demi Moore celebrated the “Die Hard” actor’s first birthday since his diagnosis and opens up about dementia days earlier.

Bruce Willis' Wife Opens Up About Dementia and Isolation: A Call for Better Awareness

Captured from a video. (Courtesy: Demi Moore)

Moore shared images and a video of them singing “Happy Birthday” to Willis and giving him an apple pie. Video caption: “BW’s birthday! Happy to honor you today. Love you and family.”

 

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