from over_clox@lemmy.world to nostupidquestions@lemmy.world on 26 Aug 17:24
https://lemmy.world/post/35046222
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…?
#nostupidquestions
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That’s a type of dementia.
So the answer the question is they do.
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’
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.
Frontotemporal Dementia…
FD or FTD
Problem solved. /s
Yeah I get the whole marketing strategy thing… ☹️
Sure, because what we need in medicine is more acronyms to occlude meaning.
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.
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.
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?..
Latin is used BECAUSE it is dead. It means the terms don’t drift. It also lets the names/terms be a descriptive as necessary.
Asking a doctor to memorise some Latin words is a lot easier and less error prone than a sea of acronyms.
Asking questions is great. Testing ideas is fantastic. Discussion is healthy. Getting so combative and argumentative with repaonses to ideas you’re posing as the obvious solution that 8 billion people wandering the Earth now have missed? That’s nowhere near as constructive for the world is it will be for you, in an inverse manner, in a few years.
I think doctors just ask what day it is or “who is the prime minister” to work out what’s wrong. When I found my neighbour wandering along the street unable to find her own front door I understood her problem without an acronym.
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.
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?
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?
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.
People with alzheimers don’t know they have alzheimers. That’s kinda the whole issue of the disease.
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.
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.
Isn’t teflon a brand name? Not standardized, just capitalized.
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?
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).
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.
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…
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.
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.
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…
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.
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.
I am very familiar with medical terms and even I ask the doctor to write down the specifics of my diagnosis when I want to seek a second opinion.
Guess you never had both your mental doctors die huh?
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.
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.
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.
I was specifically addressing your line about Latin.
I'm not really clear on what the aim of your broader point really is actually driving at. If someone struggles with language acquisition or production, yes they may struggle with the complete name of their specific diagnosis.
If communicating the specific name to the outside world is important, having it written down somewhere may help. We use tools to help move our bodies. Why wouldn't we use tools to help extend our brains.
If it's truly important to have the specific name, the other party may need to look it up anyway, which is easier with a spelling.
It gets worse, e.g. aibohphobia (the fear of palindromes). Sufferers can’t seek treatment because they’re afraid to even say its name.
Interesting, I wasn’t aware of such a condition.
Thank you for sharing 👍
It’s a joke, in case that wasn’t obvious.
Ok, honestly I wasn’t aware either way.
Do you suffer dendrophilia by chance?
Hadn’t heard about that one, heh.
Some of the phobias do have witty names like this, so I believed it. 🤷🏻♂️
I’m genuinely sorry for the people who suffer from that but good god that is funny.
Not the same but I have a certain visual phobia and if I try to look it or anything related to it up, I get inundated with photos of it, so I can relate.
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.
Hey, I can spell sexdaily!
Just call it: “CRS”… can’t remember shit.
My elders call that CRAFT…
Can’t Remember A Fucking Thing
Sad chuckles…
Good enough.
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.
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. 🤷
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.
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.
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.
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
Yes, it’s easy for most people to say and spell dementia. Except for some of the people actually suffering from brain/memory disorders…
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.
How is “dementia” more difficult than other words?
Dementia is never even pronounced
rightthe way it’s spelled.It’s spelled that way, but it’s pronounced “dihmenshuh”
Must be terrible for the french dementia patients then, those fuckers don’t even pronounce half of their words.
I’ve literally never heard anyone say dementia incorrectly.
Thanks AI!
Pronunciation of Dementia
The word “dementia” is pronounced as follows: Phonetic Spelling
So where the hell did the T in dementia come from in the first place, when in place of the T it’s pronounced with the SH sound? Yet another unnecessarily confusing word. Sigh, English is fun like that huh?
Ration, action, motion, lotion, mention…
Are two-syllable words hard?
I’ve never heard it pronounced any other way?
And my point is that being exposed to the word dementia, and taught what it means and how to say it, is no different than being taught how to say Teflon. When you first learn it, it will be a bit awkward. The more you and people around you use it, the more familiar it will become. That just how language works.
What do you propose we use instead of dementia? How would that be a better solution? I’m not against helping people with better accessibility, I just don’t see where this is a problem that can be solved by changing the words used. Especially since to me it seems like we already do what is being suggested in the title post. We already usually have a general term in common conversation in place of the full medical term used by medical professionals.
I never said to change the existing words, I’m just suggesting to do like almost every other word or phrase and have a shorthand, easier to remember/communicate acronym or something.
Imagine actually being a person suffering with brain/memory issues. You know you have a condition, but you can’t remember what the hell the doctor called it to save your life.
That’s fucking embarrassing to them, I’ve seen that firsthand more than once. ☹️
I’m not saying to completely replace it either, but what are examples of words or phrases you think would be a good “shorthand” for dementia? Anything I can think of is either infantilizing or not actually simpler, just different. And needing to learn a new word might be just as difficult, or might be difficult for other people for different reasons.
I can empathize with patients being embarrassed because they can’t pronounce or remember the name of their own condition, but I feel that the condition itself would pose the same issue with other, substitute words as well. It’s sad and tragic, but I don’t think it can be fixed by a change of language.
The existing terms I tend to hear are ‘brain fog’, CRS (can’t remember shit), and for those with a few more braincells still intact, ‘CRAFT’, or Can’t Remember A Fucking Thing.
Yes, I gather that basically any doctor worth their weight in salt should interpret those sort of terms as the patient has brain/memory issues, but isn’t there some easier and less self-insulting term than CRS or CRAFT?
Those are describing symptoms, though, and could be any number of things. No, there are not other terms currently. That’s why I’m asking you, what do you propose? You are the one that sees there being an issue with this that you want to resolve, what terms do you propose that will describe these conditions, distinguish them from other similar but unrelated conditions (a form of dementia vs stroke vs concussion, etc), isn’t insulting, and is easy to remember?
I think what this is telling us is that OP hangs out in circles where no one knows what dementia is, so it seems like a complicated word for them.
You’re telling on yourself
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.
I’m so glad Lemmy doesn’t do this nearly as much as Reddit
Yeah, it gets ridiculous at times. If you’re in a niche community, you can expect to see some “professional jargon”, but in general communities like asklemmy and nostupidquestions using those types of niche acronyms just don’t make much sense.
If you’re in a car specific community, you can throw your acronyms around, but outside it you shouldn’t expect people to know what a BSM is. Be considerate and call it a blind spot monitor instead.
I didn’t know car guys were into bondage, sadism and masochism
I know they definitely are into rubber and strapping though.
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.
Classification for medical professional.
For a lay person, you can call whatever you want.