• Unfortunately, the only face this disease gets is when a celebrity or politician is struck with it. In terms of dementia awareness, that’s all there is. My interest in the article was about the disease, not the individual. There wasn’t much information there, but awareness is important. Dementia is increasing in the population, partly due to an increase in average age.

      • I think there’s awareness of the disease, just not enough to have better support for the family. It seems anyone I talk to about it has someone close who did or is going through some level, so dementia is not a secret itself, but more a thing that people just “deal with”. But that’s true of a health in general, the infrastructure for need is lacking.

        • That’s true. But, I think for many, it’s kind of a black box. How it progresses isn’t something people want to think about. It’s pretty unpleasant, but is also a vital part of that support for the family you mention. Having something to compare their own experiences with. Being able to ask is this normal. That sort of thing.

          It’s a very sad disease.

          • The only people I’ve spoken to who really understand what a family goes through are ones who have experienced it as well. We knew it was a possibility with our mom, because our great aunt had dementia. My mom made arrangements, yet I’ll be damned she fought implementing those arrangements tooth and nail. She knew something was happening to her, and she became stubborn; wouldn’t go see a doctor because more than likely she was afraid to hear what she already knew.

            Ulitmately she went into the hospital for an unrelated matter, and was finally diagnosed. Yet by that time the disease was well underway. There wasn’t much to do except setup care and eventually hospice about four years after her diagnosis. She passed away late last year.

  •  Muffi   ( @Muffi@programming.dev ) 
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    9 months ago

    Imagine an average day in his life. Getting constantly approached by fans who want to take a picture or get an autograph, because of something he might not even remember having done. Must be so fucking weird for him. I really hope people are respectful of him and his family.

    • I highly doubt he’s making public appearances any longer. Last year he made one public appearance after he was diagnosed with aphasia. Now it looks as if his family is making apperances to update people on his condition. So I figure it’s highly doubtful he’s approached constantly.

  • This is the best summary I could come up with:


    Emma Heming Willis also told Today’s Hoda Kotb in an interview broadcast on Monday that she has been a “care partner” to her husband since the moment of the diagnosis.

    Heming Willis spoke as she continues to advocate for people living with the condition known as FTD, whose symptoms include emotional problems, trouble communicating, struggles with walking and difficulty working, according to the National Institute on Aging.

    Bruce Willis first stepped away from acting in March of last year after his family publicly revealed he was dealing with aphasia, a neurological condition that impairs people’s language processing, including their ability to read and write.

    Since then, coming to terms with her husband’s condition has been a “blessing and a curse” for Heming Willis, she told Kotb in Monday’s interview.

    Susan Dickenson, the chief executive officer of the Association for Frontotemporal Degeneration, said on Today that the disorder can manifest in “unexplained changes in how a person is in the world”.

    Dickenson added: “Somebody who normally speaks absolutely fine has trouble putting their thoughts into meaningful sentences, or they may lose the meaning of a specific word.”


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