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As caregiver to my two parents, both with dementia, it has become increasingly obvious to me that the term "dementia" needs to be refreshed, as so many other medical labels have been in the recent past (e.g., we now say "a person with diabetes" vs. "a diabetic person", and certain labels such as "retarded" are now considered pejorative. In French, the word dementia means "crazy" and is considered a harsh insult. The Alzheimer's Society here wants people to simply use the word Alzheimer's Disease for all dementias, but that is completely inaccurate and dangerously misleading, particularly in terms of treatment and caregiving. My mother, who is still aware of her dementia, hates the word. Given that half of all baby-boomers are projected to have some form of dementia, it behooves us to come up with a new term for it. I'm suggesting Diminishing Mental Capacity (DMC) or Brain Connectivity Disorder (BCD). My mother likes Brain-Fade! Any suggestions or thoughts on this topic? Much appreciated. I know it takes more than a chat-room to change these sticky labels, but we have to start somewhere.

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I agree. There is an interesting chart of old words that were cause for putting someone in a sanitarium...hysteria being one (latin root: womb -- a female disease). Another being ill treatment by husband...or even laziness. All of these words and reasoning have been redone in recent times.

Here is a link to the list - hope they wont remove. If they do, please google "old reasons for institutionalization". We would ALL be locked up!!



To me, dementia implies demented...which is more like insane than a brain disease. I do like Brain Connectivity Disorder (BCD). The DSM-5 which is the go to book for psychology has renamed dementia as Major Neurocognitive Disorder which I also think is good. This is the same book that renamed manic depression to bipolar disorder. I hope the new DSM-5 name catches on.

Angel
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GREAT idea. I like it. How do we get the ball started, since it will take a while for it to catch on.
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Hmm ... words matter to me. I'm an English major. :)

But I'm also a diabetic. Person who has diabetes is just too many words. And to need to pussy-foot around implies (to me) that there is something shameful about being diabetic. It is just an adjective, like short or blue-eyed or funny. No adjective completely describes a person. I think the push to say "person with diabetes" is silly and wasted energy.

I also don't find anything pejorative about the term "dementia." It sure beats "senile."
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Jeanne I just laughed out loud. I have a short friend who prefers to be called vertically challenged hahaha.

Angel
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A dear friend used to be manic depressive and now she is bipolar. (Or, to be perfectly correct, she is a person with bipolar disorder.) As far as I can see, the change hasn't been an improvement. And, of course, we still talk about her manic episodes.

The big, big issue -- the elephant in the room -- is the stigma attached to all kinds of mental illnesses and disorders. And if rebranding the conditions helps overcome some of the stigma then I'm all in favor of it. As far as I can see, though, the name is seldom the problem.
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I'm diabetic too, but use diabetic to describe myself all the time. No shame for me. Still, I do feel odd about the term dementia. When I use it to refer to friends and loved ones, it just feels uncomfortable.
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I prefer to use "memory issues" which most people not familiar with the terms dementia or Alzheimer's tend to understand, but will relay their own memory issues with a smile... such as walking into a room and forgetting why you went there.
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Ha, I'm still trying to get across to people that dementia and Alzheimer's are not synonyms.
Shall we call them cognitively challenged?
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I was actually thinking dementia is a kind word that encompasses all the symptoms that go with the various types of dementia. People understand what it is. Although I don't mind dementia, I don't like demented. Calling a person demented sounds bad to me, but saying they have dementia seems okay. To me it is just a symptom that says they are cognitively impaired in many ways.

Doctors do diagnose mild, moderate, and severe cognitive impairment. That is good, too.
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Jessebelle, My fil actually said he was Damebranaged!
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Cwillie, I'm with you. Calling all dementia "Alzheimer's" is a terrible idea! There is enough naming convention confusion about Lewy Body Dementia, Dementia with Lewy Bodies, and Parkinson's Disease with Dementia. That happened historically -- let us not deliberately add more confusion!!

"Memory Issues" is a good euphemism. I do not object to euphemisms; I think they can be valuable in the right context. Wouldn't most of us rather be "down sized" than "fired'? I use "memory issues" with my own mother.

But that gentle term does not begin to convey the reality of dementia. It leaves out the extreme anxiety, depression, delusions, paranoia, wandering, anger, hostility, depth-perception problems, sleep disturbances, incontinence, swallowing problems, and a whole host of a related disabilities that may or may not be a part of any individual's dementia. "Memory issues" is fine for what it is, but it is not a viable "new name" for dementia.

[By the way, isn't it odd we don't say, "she has blood glucose issues" or "he has trembling issues" or "she is in the hospital for lung fluid issues"?]

"Dementia" has the advantage that it is widely known. When we entered a restaurant and my husband was unsteady on his feet and confused about what to do with the menu I mouthed at the the waitress "dementia" and she immediately understood that he wasn't drunk. "Major Neurocognitive Disorder" is a fine category label IF it becomes widely known. I don't think that mouthing "MND" at the waitress would have accomplished the same thing.
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There is a stigma attached, and I saw it on the face of the last caregiver we hired and subsequently let go: She clearly didn't think that my mother was "there" and felt free to disregard her, even when my mother was sitting right beside her. Too many people feel that dementia means the patient is "gone" and "not listening", or not capable of understanding. This needs to be changed, for until a person with dementia is in the later stages of the disease (and even then, what do we know??), they are capable of being fully aware and highly alert to their sensory memories, or feelings. Just because they don't remember being insulted is no excuse to keep insulting someone; and that's just one ridiculous example of rationalizations being made on the fly.

I appreciate JeanneGibbs' comment about whispering something out in public - in the general sense, Alzheimer's can convey what's required in this situation, even if it's not medically accurate. And yes, it will take time to get a new label to stick. It starts with each of us, as I see it. I'm going to commit myself to using only the term "memory loss" - i.e., my mother suffers from memory loss - for the next little while, and see if it makes a difference in terms of how people react. Thanks for commenting on this topic, everyone.
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The stigma is attached to the disease, I don't think calling it something else will change that. Unless they are intimately involved with caring for those with dementia the public really has no concept of what the diagnosis really means... how many have come on this site asking if Alzheimer's is the same as dementia, or wondering if their loved one is being manipulative and asking how to set them straight, or recently a posting they didn't know Alzheimer's was a fatal disease. The general public has two - no, make that three - main perceptions of dementia 1/ There is only Alzheimer's dementia 2/ It means being forgetful 3/ in the later stages they forget their own families (how sad). Even other caregivers can have blinders on and judge others by their own experiences, not taking into account the myriad complexities of the many causes of dementia and the co-morbidities that often come with age.
In my opinion what we NEED is to educate the public, at least so they understand the basic concept that there are multiple dementias and that they all result from profound, life shortening, irreversible (at least for now) damage to the brain.
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Cwillie is absolutely right. The stigma is attached to the disease. Education is the answer. That may or may not include a name change, but a name change by itself is worthless, in my opinion.
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"A dear friend used to be manic depressive and now she is bipolar. (Or, to be perfectly correct, she is a person with bipolar disorder.) As far as I can see, the change hasn't been an improvement. And, of course, we still talk about her manic episodes.
The big, big issue -- the elephant in the room -- is the stigma attached to all kinds of mental illnesses and disorders. And if rebranding the conditions helps overcome some of the stigma then I'm all in favor of it. As far as I can see, though, the name is seldom the problem."

__________

I totally agree with this. Working for a federal branch, this is a coming issue within federal agencies.

It's not the name so much as it is the effect it has had on society. If it affects someone on the Hill or in their districts, best believe that name for a program that has negatively affected someone is indeed getting changed.

Handicapped vs. Disability, Vocational vs. Technical Education, etc.

Dementia does have a negative connotation but that's exactly what's going on...mental decline.

I don't understand why "cognitive deterioration" isn't sufficient enough for the realm of dementia issues.
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It's just like there is a stigma attached to the word depression. At least there used to be until all kinds of people in all sorts of professions have in the last two to three years stepped out of the shadows and admitted to suffering from it. I think any kind of mental condition that interferes with your enjoyment of life and hinders you socially and professionally etc. should be classified as exactly what it is, an illness. Just like arthritis, Chrohn's disease, etc., etc. If more people just admitted to suffering from these types of illnesses instead of feeling shame there would not be a stigma attached to it.
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I try to use terms that are comfortable for whomever I happen to be speaking to, and I think it's a matter of good manners and considerateness. Words in themselves are never pejorative or otherwise: "spastic" means what it means, the stigma and the cruelty associated with the term come from its use by ignorant people meaning to be unkind. And for every person who insists on 'person living with visual impairment' you can be sure there'll be another who will clip you round the ear for being such a mealy-mouthed ass about it and snap "I'm blind, for God's sake!"

Dementia means what it says - the loss or diminishment of mind. It's the reality of it that's painful, whatever you call it. A rose by any name would smell as sweet.

Remember when schools stopped describing students as retarded or slow and started calling them pupils with special needs or learning difficulties instead? And how fast exactly did these children's peers start jeering "special" and "LD" at their fellows? - usually, of course, not at the children who actually did have disabilities but just at any person whom they happened to wish to insult.

You can change the words hoping that it will kick-start a change in attitudes, it's always worth a try. But it's never worked yet that I can remember.
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Doctors do not use the D word. Now they scribble Dx code numbers on your Rx for bloodwork and hope you don't look them up. So #278 is morbidly obese, #297 is delusional, #300 is anxiety, etc. Plus, the codes are all changing to ICD-10 format to add to your confusion.
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Oh great another layer of obfuscation, all that latin is bad enough. And then of course there will be all the errors from transposed numbers or unintelligible scripts, and the doc's billing for the time it takes to look up all those new codes because it will be impossible to commit them to memory.
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cwillie, I totally agree. It's bad enough trying to figure out names....now coding? That's no better than the acronym explosion. Everything has been reduced to a couple of letters. Society really is being dumbed down afterall. =\
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