I can't seem to get away from dementia & Alzheimer's, no matter what I do! I am working on my Medical Transcription course and the VERY LAST chapter!! It's about psychiatric stuff...and low and behold, one of the terminology words to "know" is dementia...Knowing that I "know" what it is already, I decided to take a gander in the Medical Dictionary and, well, here's "the official" definition: "a general loss of cognitive abilities, including impairment of memory as well as one or more of the following: aphasia, apraxia, agnosia, or distrubed planning, organizing, and abstract thinking abilities. It does not include loss of intellectual functioning caused by clouding of consciousness (as in delirium), depression, or other functional mental disorder (pseudodementia). Causes include a large # of conditions, some reversible & some progressive, that result in widespread cerebral damage or dysfunction. The most common cause is Alzheimer disease; others include cerebrovascular disease, central nervous system infection, brain trauma or tumors, vitamin deficiencies, anoxia, metabolic conditions, endocrine conditions, immune disorders, prion disease, Wernicke-Korsakoff syndrome, normal-pressure hydrocephalus, Huntington chorea, multiple sclerosis, and Parkinson disease." I thought this was an interesting definition, because it doesn't talk about MEMORY FIRST, which is what most people not involved with this disease do!! Everyone on the outside seems to think it's a "memory" thing and just that. We, of course, know better!! And then there's the part about DOES NOT include loss of intellectual functioning...etc. Any thoughts on all of this??
I think it means that the "loss of intellectual functioning" in the ways described are TEMPORARY, whereas dementia is permanent... no, wrong, because I'm sure the adjusting some of the vitamin deficiencies etc can reverse it.. Interesting.
When I was doing a masters in reading ed, I found I could do papers on things like "how to hold a book fair" etc that I had personal experience with. So now you can do a paper based on your experiential learning about dementia. (note it was reading ed - I thought it would be how to teach children with difficulties learning, but no, it was how to teach reading, generally, to kids on grade level.
All I can say is that it reinforces my conviction that one absolutely MUST take their loved one to a well known, respected clinic that SPECIALIZES IN DEMENTIA in order to get a proper diagnosis. There is such a complex set of symptoms and causes that it is impossible for the primary doctor or even a neurologist who does not specialize in dementia, to be able to deal with the situation.
You are so right in that "memory" isn't always the the first symptom. Often it is personality change in the form of irrationality, stubbornness, tantrums, and self-centeredness, which sends people to a marriage counselor rather than a dementia specialist. We have to keep up our efforts to educate doctors and the public on what dementia and Alzheimer's Disease really are.
Calling AD a 'disease of forgetting' is not only inaccurate, but it frightens perfectly normal people needlessly. I have spent endless hours trying to convince different people that it is normal to forget some things sometimes and just because you forget a name, a word or appointment temporarily, it does not mean you are getting AD. Explaining AD vs dementia is another thing altogether!
Just like when I have a conversation with DH. I might forget the conclusion of the conversation...what did we decide to do. He will forget that we had the conversation at all. Not remembering everything is normal.
When this comes up, and I'll admit that for me it rarely does, I ask them if they know their address and phone number, what season we are in, what month this is and what the next big holiday is. I might also ask them when was the last time they put the car keys in the refrigerator, because that particular Alzheimer's Association ad was right on. All of those things are dementia. Putting your keys in the wrong pocket of your purse is not.
"What the next big holiday is" would be a good questions for our MiniMental. It has never been asked DH but I'm sure he would not have a clue; he might know if Christmas decorations were up everywhere, but I'm not even sure about that.
My frustration has been that the formal definition of dementia is loss of intellectual abilities severe enough to interfere with everyday functioning, but the doctors tend in practice to define it as loss of intellectual functioning to the point of not being able to make sense of the world. As soon as my husband's intellectual changes meant he could no longer work as a college professor, that was serious interference with his everyday functioning. But doctors kept telling him "You don't have dementia" because he knew where he lived and what day it is and even who is president (he is a news addict).
"In a recent article, the authors present a rationale "for the elimination of the word dementia as a diagnostic term." They view the word as a "non-specific generality which can easily rob patients of their humanity in the eyes of others and, more importantly, in their own eyes. The term can stigmatize and isolate, making others reluctant, if not outright fearful, of dealing with the person." It is a dehumanizing expression with a past history of very negative connotations. "At its unkindest, it a word totally without hope - which is a crucial tool when faced with a devastating illness." As a solution, they suggest simply changing the D in FTD from dementia to Disease. They are advocating this as "another important addition to the changing attitudes towards people with disabilities. It has great support among caregivers and increasing support among physicians. It is not scientific theory or law, but rather science/medicine catching up to advancing human sensitivity and values." Trachtenberg, D.I. and Trojanowski. J.Q, ArchNeurol/Vol 65 (No. 5), 593-597, May 2008)
Nope. My husband is not diseased. He has a form of dementia.
Look this started because some of us won't use the word Alzheimer's because our LOs who have dementia don't have the Alzheimer's variant. If I tell someone out there that my husband has a disease what am I actually telling them? He doesn't have cancer. He does have a heart condition but that isn't what is causing the problem. If I don't call it dementia what should I be calling it?
Dementia is a symptom of a disease. Not the disease itself. There are many different diseases that cause dementia. I much prefer to tell people my husband has FTD and that it is different from other diseases like Alzheimers or vascular dementia. etc. The underlying disease is different but some symptoms do overlap.
Mine has a weird form of Vascular Dementia (notice that in this case the disease is called "dementia") caused by being resuscitated too many times in one day because his heart kept stopping.
Yes deb, dementia is generally a symptom and not the disease itself. And there are lots of reasons why they get demented. FTD is the most unusual of the more common reasons.
Insurance companies do not cover all of the needs of an autistic child or a Alzheimer patient because they have said they do not consider these "diseases", but rather CONDITIONS. A disease is a degenerative condition - some are curable, others are not. Has anyone heard/or read anything in the (supposedly) NEW Health Care Initiative that includes provisions for care for our people? I haven't. But we need nursing care, in home help or insurance to pay a portion of the memory care facility bill..Tell me Alzheimer's isn't a Disease!.... It's eating the brains of our precious spouses.
The article states in part “is not scientific theory or law, but rather science/medicine catching up to advancing human sensitivity and values." Methinks “hogwash.”
Years ago the term cancer caused people to "stigmatize and isolate" so it was whispered. Did you ever in your wildest dreams think we would be saying words like "breast" or "testicle" out loud in everyday conversation? Thanks to an excellent job of advocacy by and for people diagnosed with these types of cancer there is now widespread knowledge of the disease, the symptoms, and we are seeing more cures.
My DH saw people today that had not seen him in several years so his deterioration was most apparent to them. When they inquired I said "he has a form of dementia" which they readily understood. Can you imagine the confusion they would have had if I said "he has disease" ??
I believe dementia is a perfectly fine word – it is what it is. Hiding behind "nice terms" isn't going to make it go away, isn't going to help our cause for more research, isn't going to make our caregiving jobs any easier.
Everybody has to do what is right for them. As for me, I'll use the word dementia and I will let everybody that will listen know that it variously manifests in my DH as: anger, rebellion, frustration, incontinence, rage, constant sleeping, forgetting, irrational behavior, stubbornness, tantrums, impaired judgment, impaired mobility, socially inappropriate behavior, etc. and that it will eventually shut down more and more of his bodily functions until it kills him.
I can’t help but think if the world knew how awful these dementia diseases were – how truly horrific – there would be more interest in research and more availability of appropriate care. As long as folks just see the sweet little family scenes on TV advertising Aricept we're not accomplishing a thing.
Dementia, in my view, is a collection of behaviors that interferes with normal activities and relationships. People can lose the ability to control emotions, solve problems, they become agitated, delusional, have hallucinations, etc., and taken together, that's dementia. It is neither an illness nor a disease. It can be caused by a dozen things like a blow to the head, alcoholism, AD & other conditions and diseases. I consider dementia a symptom just as a fever is a symptom. Fever could come from an infected toe or a ruptured appendix, you have to find the cause, just as you have to find the cause of the dementia. It's the dementia that first drives us to see a doctor--the odd behaviors. Depending on the diagnosis you can, hopefully, treat if not reverse the dementia in some situations. I guess it depends on your personal experiences, the word, itself, does not bother me. But language does change. I remember as a teen-ager, no one every got 'pregnant.' They were 'in a family way' or 'with child.'
Weejun, I agree wholeheartedly that it's better to continue to use the word and help increase awareness.
I posted the article because it was surprising and interesting, but I don't think I agree with the premise.
They want to get rid of the word because "it is a word totally without hope " Well, that's true, isn't it, dementia IS a terminal disease and there IS no hope for our LO's.
I always say my husband has dementia, not Alzheimer's, however, the same outcome. Since most people have never heard of FTD or Frontal Temporal Dementia & they have heard of Alzheimer's. I am hoping that they see dementia is not always your grandmother or grandfather's illness, but someone 58 years old or younger can also suffer. I agree let's spread the word. As we have mentioned before the general population, still thinks Aricept is a cure, or you just have memory problems, most don't realize this is a terminal illness.
There are different types of Early Onset AD. It is generally defined as "under 65". That is what my husband has. However, there is also another type of Early Onset that is extremely early - can strike in the 30's - it is what Tony's wife had - and it is driven by genetics. It is much more aggressive and advances much more quickly than the generally known "under 65" AD. The VERY EARLY onset comes from a different gene than the one Sid has. Sid carries the APOE gene. I just got out of bed, so haven't had a chance to check the files for the number and name of the very early AD gene, but it is different than APOE.
A few months ago, the news reported the youngest diagnosed cases of Alzheimer's Disease. Twin girls, in Nevada, were diagnosed at the age of FIVE.
As Alzheimer's Research continues, one of the most important advances is in the field of diagnostics. Just as with cancer and other life threatening diseases, early detection is the key. Dr. Kenan said the earlier the diagnosis, the more able science is able to slow down the progresssion. After it's gotten its' grasp and degeneration begins, I don't believe Aracept and Namenda can help all that much. My dear husband is in end stage, and I will be very surprised if his doctor discontinues the Aracept and Namenda very soon. I don't want to prolong THIS stage of his disease, to be perfectly honest. Neither would he.
Wow, nancy, 5 years old, that's amazing. I agree that medicine should only be used to prolong the stages that our LO's would want prolonged. But choosing the moment to stop is hard.
I'd heard about the twin girls and when I tell people I think my DH always had AD, they say 'no way.' But it was there, it wasn't until he was in his late 50's that it became apparent to more people--altho no one thought AD--just 'something.' Then in his 60's the bizarre behaviors came roaring out. Still, he was functional, nothing you could pin down. But for decades people would ask me why DH said or did that, he was a bit quirky but I loved him anyway--altho things could get sticky, I had no idea we were dealing w/a brain disease. I just knew something wasn't right. Twice I dragged him to marriage counselors who both advised me to leave him, they saw 'something' they could not deal with, but, again, never thought AD. So I think it's just there, hidden for decades.
Now I have 79 y.o. non-fraternal twin men I've known for decades - non-blood relatives, but part of the extended family and they both have AD. It's incredibly strange. One is very stoic, just sits, says nothing, no expression, may on occasion acknowledge someone in a fleeting way, but just sits, is not incontinent, feeds himself just fine, been this way for about 15 yrs. The other is pretty much the standard AD presentation. If you didn't know he had AD, he can fool you at a gathering, everyone would say, 'there's nothing wrong with him,' but speak to his wife after they get home, etc. I was with them a few months ago and it's really odd. They are both, otherwise, very healthy. Their personalities and life styles were always very different, twins or not.
Nancy B posted this on 10/4/09.: A few months ago, the news reported the youngest diagnosed cases of Alzheimer's Disease. Twin girls, in Nevada, were diagnosed at the age of FIVE.
I wonder how they are and if the diagnosis has changed any? I tried to find anything on the internet but couldn't