Bruce Willis' wife Emma says dementia isn’t talked about enough: 'It is so isolating'

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Bruce Willis' wife is opening up about her experience caring for someone with dementia. 

Emma Heming Willis hosted an Instagram live Friday, during which she spoke with occupational therapist Teepa Snow, who is also a dementia care specialist and founder of Positive Approach to Care. The two discussed the stigma surrounding a dementia diagnosis and how it is hard to understand if you haven't been through it.

After Snow brought up the backlash Emma received when she asked photographers to leave her husband alone, Emma clarified her statements, explaining she didn't expect them to refrain from photographing her husband. She just wanted them to do so respectfully.

"People were thinking I was asking for privacy. We weren't asking for privacy. We were asking for respect of my husband and his disease," she explained. "I think it just goes to show that there is just so much more education that needs to be about dementia."

Emma explained people thought she was asking for privacy, but she was asking photographers to respect her husband. (Dia Dipasupil/WireImage)

BRUCE WILLIS' WIFE PLEADS WITH PHOTOGRAPHERS TO LEAVE HUSBAND ALONE AFTER DEMENTIA DIAGNOSIS

Emma believes people had a hard time understanding her request due to the lack of knowledge about the disease.

"I guess if you're not living it or know it, you don't understand it," she suggested.

The lack of knowledge, in her opinion, stems from not many people talking about their experiences as caregivers and how certain situations can act as triggers. 

"If you could take a look into my messages and my direct messages, honest to God, you would think the whole world has dementia," Emma shared. "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 admitted it was hard even for her to open up about her husband's diagnosis when she first learned about it, saying, "It is so isolating." 

She noted some of that isolation was her fault 

"I did that to myself for a while of just holing up, and my friendship circle became smaller because it was also very difficult to talk about," she revealed.

Bruce Willis' family announced in a statement released in February that he was diagnosed with frontotemporal dementia.  (Demi Moore Instagram)

"It's definitely very lonely," Emma said. "Which, the blessing for us to be able to come out with our family's statement was to be able to have a community, and how beautiful is this community? … Now I have a community of people out there that are willing to help."

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Earlier in March, Emma opened up about how difficult it is to celebrate milestones like birthdays and anniversaries after Willis' diagnosis, writing it is hard "when usually our person would acknowledge the event, now their changing brains just can’t. And that is what it is."

Days before that, Emma, Willis, his five daughters and his ex-wife Demi Moore gathered to celebrate the "Die Hard" actor's 68th birthday, his first since his diagnosis.

Moore posted a series of photos from the celebration as well as a video of them presenting Willis with an apple pie while singing him "Happy Birthday." She captioned the video, "Happy birthday, BW! So glad we could celebrate you today. Love you and love our family."

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Willis' frontotemporal dementia diagnosis, known as FTD, came one year after it was announced he was diagnosed with aphasia, a neurological disorder that affects an individual's ability to comprehend or express speech.