This question comes from watching the TV right now, and they’re talking about Bruce Willis. I feel bad for him, I really do…

Bruce Willis apparently has what they call Frontotemporal Dementia. That’s a tounge twister mouthful for most average people, I can only assume Mr. Willis probably can’t even remember the name of his own condition…

Why isn’t there a ‘patient-friendly’ easy to remember name for disorders that literally affect a person’s brain and memory?

Like shit, I bet most people wouldn’t know what polytetrafluoroethylene is, but they gave everyone a simple name to know it by, teflon.

So, why don’t they have simpler terms for brain disorders so the suffering patient might be able to talk to their own doctor privately…?

  • SkaraBrae@lemmy.world
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    27 minutes ago

    Part of the problem with dementia is that short term memory loss and aphasia are two of the most common early symptoms. It’s not because it’s a difficult word, it is because their brain no longer has the capacity to function that way. It wouldn’t matter what you called it, they still may not be able to learn it or remember it: the part of the brain that used to do that for them may no longer be accessible.

    Most people don’t realise that dementia is terminal. It is a gradual cognitive and physical decline that results in death.

    The Wicking Dementia Research and Education Centre at University of Tasmania has an open course on Understanding Dementia that is really good, and free, if anyone is interested in learning more.

  • TranquilTurbulence@lemmy.zip
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    9 hours ago

    Doctors call it “pharyngitis”, because they need to be specific in their documents. Normal people just call it “sore throat”, because that’s close enough and easy to understand. Same thing should apply to various brain disorders too.

    If you aren’t writing to medical professionals, go with whatever description you understand better. It’s going to be easier for everyone involved.

    If you’re in America, you should look up the relevant TLA and use that instead. Every American seems to be born with the innate ability to know all of them, so it’s just as good as using the easily understandable two word description.

  • howrar@lemmy.ca
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    14 hours ago

    The fewer syllables you use, the fewer words you can make. There are too many disorders out there to give them all simple names in an unambiguous way.

    • over_clox@lemmy.worldOP
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      11 hours ago

      Also, the fewer syllables for people suffering brain/memory issues, the easier it is for them to communicate.

      Nobody expects a person with brain problems to remember the entire medical encyclopedia, but it would make it quite a bit easier to shorten the most common brain disorders, where the suffering person might be able to remember and say it on their own.

      • BussyCat@lemmy.world
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        10 hours ago

        He has dementia which is an easy enough word for most people to be able to say. If you want to know the location of the dementia it’s in the frontotemporal area of the brain. But why that complex word well the front of the brain is called the frontal lobes which is a fairly logical name then the temporal lobe is the part that’s near your temples which is also kind of logical.

        Historically medicine has been bad about being less specific with names and instead just naming things after people which while they are easier to say don’t actually describe what’s happening

        • over_clox@lemmy.worldOP
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          9 hours ago

          Yes, it’s easy for most people to say and spell dementia. Except for some of the people actually suffering from brain/memory disorders…

          • Mesophar@pawb.social
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            7 hours ago

            How is “dementia” harder than any other word? If they are suffering from brain/memory disorders, wouldn’t any new or novel word have the same issue? I think the opposite would be better, and normalizing simplified forms of the medical terminology (dementia instead of frontotemporal dementia) in every day language allows those words to have deeper roots in someone’s memory, making it less novel and more resilient to certain memory issues.

            • over_clox@lemmy.worldOP
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              6 hours ago

              How is “dementia” more difficult than other words?

              Dementia is never even pronounced right.

              It’s spelled that way, but it’s pronounced “demenshia”

  • cecilkorik@lemmy.ca
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    16 hours ago

    Is “senile” not simple enough for you? The problem is, it’s maligned because its too loosely applied and becomes used as an insult. So it’s really a no-win scenario. Make it too simple and it becomes clinically useless and people will throw it around like an insult, make it too complex and it becomes only useful in clinical settings and average people can’t remember it. Is there a middle ground? I’m not sure. Alzheimer’s and dementia/demented are kind of in the middle, but they both get used inappropriately and are clinically useless, so they end up being a worst of both worlds.

    • over_clox@lemmy.worldOP
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      15 hours ago

      You do make a bit of a point there, it really does seem like a ‘no-win’ scenario…

      Sigh, just brainstorming a thought towards trying to assist disabled people a little better. 🤷

      • cecilkorik@lemmy.ca
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        11 hours ago

        Nothing wrong with asking the question and I’m sorry if my response sounded dismissive or hostile, I actually think you asked a great question and your heart is definitely in the right place. I think we should do a lot more discussion and education around brain diseases and brain aging, if we spent as much time trying to understand how natural intelligence works as we do how artificial intelligence works these days, maybe we’d have a lot less chaos in the world.

  • IWW4@lemmy.zip
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    19 hours ago

    That’s a type of dementia.

    So the answer the question is they do.

    • over_clox@lemmy.worldOP
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      19 hours ago

      Yes, I get that. The word dementia itself has 3 syllables, they can’t come up with a shorter and easier to remember and speak 2 syllable version?

      They shortened polytetrafluoroethylene down to 2 syllables, so why not help those suffering brain disorders and memory issues with simpler terminology?

      You ever ask a person suffering Alzheimer’s how to actually spell their own condition? They’ll probably be either like ‘old timers’ or just a frustrated ‘fuck you’

      • scarabic@lemmy.world
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        12 hours ago

        Do you have much experience with people with Alzheimer’s? It’s not a question of keeping the spelling simple. They lose their own names. And anyway what is this scenario where any damn thing depends on their ability to spell their clinical condition?

        • over_clox@lemmy.worldOP
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          11 hours ago

          No, not specifically Alzheimer’s anyways.

          But for almost the past decade, I’ve been helping care for people that have had stroke, partly paralyzed, have brain damage, mute and unable to speak from birth, etc.

          Thank you for asking though. I actually do have genuine care for disabled people. Even if I’m not a complete expert in the field, I do what I can. They don’t have many people actually willing to help.

          Does it hurt to think about ways to help better? Like what if something happens, and I can no longer help?

          • scarabic@lemmy.world
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            8 hours ago

            No it doesn’t hurt. I’m really just trying to answer your question. Why don’t we have better names? Because they’re for the clinicians, who need the terms to be precise, not easy to pronounce. And literally nothing is easy enough for a patient with dementia or Alzheimer’s to remember.

      • Dem Bosain@midwest.social
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        18 hours ago

        They shortened the name of PTFE to Teflon because they wanted to sell it. Once there’s a market for frontotemporal dementia it will get a short name too.

        • over_clox@lemmy.worldOP
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          18 hours ago

          Frontotemporal Dementia…

          FD or FTD

          Problem solved. /s

          Yeah I get the whole marketing strategy thing… ☹️

          • ByteJunk@lemmy.world
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            15 hours ago

            Bro has dementia. You could call it the most memorable, epic name ever, and he’d still forget all about it in 10 minutes. It’s a fucked up disease.

            But as to your gripe with the name, Frontotemporal dementia is a pretty decent name.

            Even if you know nothing about medicine, you’ll understand it’s some type of dementia, and immediately get a very good image of how it affects a patient.

            If you’re more familiar with medicine and the brain, it will also tell you what regions these specific types of dementia affect, giving you clues as to what brain functions could be most impaired.

            Thank god medicine has moved away from eponyms, because Creutzfeldt-Jakob disease, or Binswanger disease, or Fahr disease, are much much worse. If you’re not familiar, you’d have no clue if they’re a type of dementia or a problem on your anus.

            • over_clox@lemmy.worldOP
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              13 hours ago

              I’m pretty sure that if a patient came in slurring their words and all they could basically remember to say was ‘I can’t remember much, but my last doctor said I have FTD’, then if the acronym was standardized, every doctor would know what they mean.

              • XeroxCool@lemmy.world
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                9 hours ago

                I can tell you that doctors will not trust the claims of anyone slurring their words. If they can’t identify the person and pull up their records, they’ll do their own diagnostics.

                What problem are you trying to solve? In what instance have you experienced an actual doctor say they wish there was an acronym for everything? Frontotemporal dementia is 3 precise bits of data. Two bits tell you what type of dementia, one bit to tell the majority of doctors this isn’t their specialty and just “dementia” is sufficient. And, more importantly, is rooted in Latin - the common root of medical terminology. It’s pronunciation carries further across the world than writing.

                • over_clox@lemmy.worldOP
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                  8 hours ago

                  No shit, I already stated that most medical terms have Latin roots.

                  What sane person you know that speaks Latin?

                  What mentally handicapped people speak Latin?..

  • solrize@lemmy.ml
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    18 hours ago

    It gets worse, e.g. aibohphobia (the fear of palindromes). Sufferers can’t seek treatment because they’re afraid to even say its name.

  • Skullgrid@lemmy.world
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    16 hours ago

    couple more examples for you that aren’t just about how complex the word is :

    Stutterers : good luck saying this word while you stutter.

    Dyslexia : good luck spelling this word.

    Lisp : yeah, that S is never going to hit the mark.

  • unexposedhazard@discuss.tchncs.de
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    19 hours ago

    Im sure there are plenty of abbreviations people make up for their disorders. While one person might be okay with it, others might see it as a slur of sorts. I worked with someone with down syndrome that called himself and his similarily affected friends “downies” but you can be fucking sure as hell that others might be very offended by that.

    I guess you could create “official” abreviations somehow, but even those would not be accepted by everyone i am sure.

    • over_clox@lemmy.worldOP
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      19 hours ago

      That’s exactly what I mean, standardize some shorthand versions of mental/memory disorders where perhaps even the sufferer might even be able to remember, speak and/or spell it out, standardized across all of the medical community.

      Hey, the chemical industry had no problem making teflon a standardized name, everyone knows it by just those 2 syllables…

      And I’m pretty sure I’ve never met a person that considered the shorthand version of polytetrafluoroethylene as offensive.

        • over_clox@lemmy.worldOP
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          13 hours ago

          Yes, Teflon is a brand name, that’s not exactly my point. My point is that basically everyone knows what Teflon is, because of the short name.

          The only thing more well known across the world is LOL, and nobody standardized that, it just came to be as the internet grew.

          Is it that difficult to give brain damaged people a simple three letter acronym like FTD that’s easy to remember if they have to talk with emergency services or other doctors?

          • Squirrelsdrivemenuts@lemmy.world
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            7 hours ago

            But FTD is used by people to talk about frontotemporal dementia.

            However, it isn’t an acronym, but an abbreviation. Abbreviations are generally not much easier to remember and even more meaningless to normal people. The reason they wouldn’t use the abbreviation in the documentary is because abbreviations are generally considered even more complex to both remember and understand than ‘long’ words. Only when a loooot of people know and talk about a disease does an abbreviation or other name become mainstream enough (thinking about flu for influenza etc) that it actually becomes useful to have the shorter name. Even at a conference about brain diseases you would only use FTD after giving the full term first so people know what you are talking about.

            But yes, if Bruce goes to a clinic and says he has FTD they will know what’s up (or google the abbreviation).

  • Berttheduck@lemmy.ml
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    18 hours ago

    This is a big problem with medicine in general. Medicine is unfortunately very much an old white man’s club, it’s getting better slowly, but all the knowledge and the way it is taught comes from that old white guy standard.

    Medical terminology is complex because medicine is complex. There is definitely an element of being part of an exclusive club but there is also communicating lots of information quickly and efficiently.

    Frontotemporal dementia describes a specific set of symptoms and if you are medically trained tells you most everything you need to know about what is happening. As opposed to the patient is a bit confused or sees things sometimes which could be many different things.

    The language and how diagnoses are communicated are really important, a good medic should tell the patient their diagnosis with the medical words but should explain what those mean in as much detail as the patient wants.

    Most patients are able to understand dementia even if the frontotemporal bit doesn’t make sense to them.

    • over_clox@lemmy.worldOP
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      18 hours ago

      Official medical terminology tends to be based off of Latin. How many people do you know that speak Latin?

      Benadryl is the consumer friendly name for diphenhydramine hydrochloride. And yes I just pulled those letters out of my ass, I learned long ago that brand name Benadryl is expensive, but far cheaper alternatives exist.

      I guess that is sort of the opposite of my thought though, my point is that important things should be easier to remember, especially those with brain/memory issues. Just because I can remember and spell long and complicated words, doesn’t mean everyone else can…

      • paraplu@piefed.social
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        8 hours ago

        You don’t need to speak Latin to notice common roots and get a gist for what a term means.

        If you’re actually in a position where it’s useful to distinguish one type of dementia from another, having a meaning that’s linked to what the symptoms are may help you remember both name and symptoms.

        If you’re not a medical professional, remembering either name or symptoms for specific types of dementia is unlikely to be useful.

        • over_clox@lemmy.worldOP
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          8 hours ago

          You’re missing the whole point.

          The disabled patient should be able to memorize the name of their own condition, if at all possible at least. Disabled people don’t 100% of the time have other people available to help.

          • Berttheduck@lemmy.ml
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            6 hours ago

            The problem with this point relating to dementia is that dementia specifically makes forming new memories harder. So they are unlikely to remember any specifics including their diagnosis. Also for the patient saying dementia or memory problems will be more than enough to tell everyone who’s not a doctor.

            The frontotemporal bit won’t mean anything to the general public unless they remember more human anatomy than most, but everyone has heard of dementia that one is in common parlance anyway I think.

      • Squirrelsdrivemenuts@lemmy.world
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        15 hours ago

        I would counter that the medical term is descriptive. Tell anyone with medical/medicine-related education someone has frontotemporal dementia and they know what is going on with the patient and what bodypart is affected. We can simplify with just “dementia” or a simpler term but you loose the specific meaning. Just like cancer is a two syllable simple word but a proper diagnosis includes way more information and has a more difficult term related. Equally, while the layman may prefer teflon and benadryl, the chemical/scientific name tells a trained person exactly what they are dealing with without having to look anything up, and does not suffer from different names across languages/borders. You cannot force simpler names as they will not be used in the medical/scientific community, so only if a disease is common enough to enter most peoples vocabulary will they come up with simpler terms or remember the term easily.

        • over_clox@lemmy.worldOP
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          15 hours ago

          Yes, the medical term is clearly more descriptive. For medical professionals.

          That doesn’t make it any easier for the patients suffering brain/memory problems to remember or explain their own condition.

          We’ve made acronyms for everything else under the sun …LMFAO…

          • Squirrelsdrivemenuts@lemmy.world
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            14 hours ago

            But who does the patient need to communicate it to other than health professionals? Other people should be satisfied with a phrase like “dementia that causes me to behave different and/or have difficulty speaking” otherwise they are just going to have to look up the disease anyway.

            FTD is a rare disease (meaning less than 65/100000 people get it in their lifetime) and there are thousands of rare diseases. Who do you propose should come up with simple names for all of these, teach these to all medical professionals and make sure all info online gets both the descriptive and simple name attached?? There are enough issues with terminology in the medical world as is, trust me.

            • over_clox@lemmy.worldOP
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              13 hours ago

              Yeah I get you, ROTFLMFAO!

              Oh, I meant LOL…

              The internet has no shortage of creative yet simple three letter acronyms, what makes brain issues any different? If anything, people suffering brain issues should be the first to get simplified terminology.

              Like, what if Mr. Willis was just an average everyday person, same issues, but wanting a second opinion from another doctor? Not saying the second opinion would or would not be any different, but how would a patient with brain/memory issues even explain him/herself privately?

              Not everyone with brain issues even has anyone to help them properly.

      • Blue_Morpho@lemmy.world
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        16 hours ago

        There are too many terms. If you simplified every medical term you’d end up with too many words that were almost identical but meant very different conditions.

        I see it like thinking you could compress any possible number string to a simpler number that’s easier to remember.