So many in my support group and on blog sites such as this have complained about how MMSE results have nothing to do with reality. Ready for this? We had our quartely follow-up visit this past week at a NYC ADRC, this time the 9 month follow-up, as part of the Phase III CONCERT trial ... testing aricept in combination with dimebon. My wife has declined considerably since our last visit, 3 months ago, and the geriatric psychiatrist agreed with me that she was now leaving early stages and entering moderate stage AD. But guess what the MMSE showed? A year ago when she entered the trial her score was at 24. At her last visit 3 months ago, her score was 26. This past week, her score was 29! Her short term memory is now COMPLETELY gone, she cannot process even simple one-step directions on most days, on most days is completely unable to use her cell phone correctly or even check email on her computer, etc. ... yet that stupid MMSE shows her making progess. Twice now she has had her infrequent 'good' mornings on MMSE test days! Should she do that well or close to that well on the final MMSE that she'll be given in January, she will become a 'positive result' in the study ... when anyone can clearly see that she is not only worse off a year after entering the clinical trial, but significantly worse off. Sure, were she not on those meds she could have declined even further ... it's hard to prove a negative. But using the MMSE to evaluate progress or deterioration? Gimme a break!!!
HBs neurologist doesn't take MMSE seriously, thank goodness; doesn't give it any more. Can't imagine from all the experiences with it vs real life that any doctor--especially in a test situation--would.
I have been railing against that stupid test for at least the last 3 years. From what you say about your wife, I don't think Sid is as far advanced as she, but he cannot process anything but the simplest of language. Short, simple, basic sentences said directly to him, after one gets his attention and tells him to focus. He has the judgement and reasoning on good days of a 9 year old; on bad days, a 2 year old. He has NO short term memory, and is not making new memories. He does what passes for listening to a conversation, but as my latest blog said - teflon brain. I could go on, but you get the idea. His MMSE score is consistenly between 27 and 29. GRRRRRRRRRRR!!!!!!!!!
Our neurologist admitted that it is a faulty test, in that it does not test the areas in which Sid is the poorest. Yet, ALL drug companies use the MMSE for criteria for being eligible to enter a trial and determine the final results.
Oh, and while I am ranting - the evaluator gives Sid an unlimited amount of time to spell WORLD backwards, and one time let him change his answer on one of the questions three questions later. I am fully aware that the evaluators they use have more education that I, BUT I did do formal language testing for almost 10 years, and I know proper testing procedures, and that wasn't it.
I have had some of the same experiences with my dh with the test. The VA also gave him the longer test that takes 2 hrs. and They had to quit the test because he became very upset...this was 2 years ago. The VA will not pay for his namenda because he scores too high on the MME and yet he keeps declining. They only provide the drug if you are moderately severe. I keep telling them...I wouldn't want him to have the drug if he was in that condition...why would I want to prolong his condition then...I want to prolong it now when he is moderate. They will give him the test again in Nov. I am wondering if aircept would be better for him then namenda?
Joan, I had the same experience, with the doctor allowing my husband to try again: http://downtherabbithole-mary.blogspot.com/2009/05/mini-mental-test-mild-cognitive.html
This test has always seemed ridiculous to me, especially in the case of younger patients, who can so easily prep for it. Once they know what's on it - they will study ahead.
And really, even with older patients, what does it tell you whether or not someone knows the date? My mother has been retired for 25 years, she does not have an active social life, so has no need to know what the date is.
This is all just very frustrating for someone who is looking for a diagnosis and is blown off by physicians. But when you consider they are using this to approve drugs - wow! That is VERY scary! Acvann, will your wife undergo more extensive neuropsych tests at some point later in the trial? If the measure of improved cognition is strictly an MMSE, I think we need to question the FDA regarding the trial procedures....
Would you believe that some of the cognitive testing they give along with the MMSE for this Phase III clinical trial evaluation involves yes/no answers and if the patient isn't sure or doesn't know the correct answer, the patient is told to GUESS!! And NO, folks ... I am NOT kidding!!! If the patient guesses correctly, the patient gets a point for a correct answer!! How imbecilic is THAT??!! When I questioned both the validity and reliability of such a test, the principal researcher shrugged his shoulders, laughed a little out loud, and said he agreed with me. BUT ... he also said that this was the testing protocol he is directed to follow! With my wife's permission,I have recently started venting my frustrations with AD by writing articles for professional publication, sending them to journals read by doctors in the field. So far, one has already been published, another has been accepted for future publication, and I am currently seeking publication of a third piece. I discuss how doctors so often misdiagnose AD, how caregivers' observations are so often ignored, how doctors often do not share needed, timely, and important information with patients and/or caregivers at the time of diagnosis, and I suggest changes that doctors could make to more effectively diagnose AD in its earliest stages. In other words, I am venting the common frustrations we all share through this terrific forum that Joan has set up for us to keep us all a little more sane. Trust me ... when my wife's clinical trial ends in January, I WILL be writing a 4th article ... this testing charade!!
Our neuro conducted a mini mental test at first but while he included a few of the routine questions found on it, he also streamlines his questions toward the individual based on his education, profession etc..and we got the clue outright that DH had memory issues. This summer he conduced a neuropsycb test ( he has his own computerized testing as getting the neuropsych guy here is IMPOSSIBLE) and it gave indicators or where his strengths and weaknesses are. At our recent Alz meeting this same issue was brought up and most said they wondered if the neuropsych test was worth the time and $$ and from my standpoint it was. I know that despite my DH being at the mild/moderate level, he has above average results in the spatial and math areas which the dr said is unusual..that is the first area where weakness are seen. However, my DH was an attack pilot ( flew A-4s) and this accounts for his strength there. He is still strong in all things aviation. But his recall and ability to pay attention is below average at a minus 1 to 1.5 ( whatever that scale means or is). So for me, it tells me where his weak areas are and how I might need to change how I do things with him. I have to go more slowly when explaining things to him and repeat the answer several times...
My husband was not a pilot, but he was very strong in math and visual/spatial abilities, particularly sense of direction. Just like your husband, these abilities are have hung on. The neuropsych and the neurologist were concerned about him getting lost and handling money, because as you said, those are the first to go. Not with him. He's slower now, and I am seeing those abilities fade, but no where near as much as his others. He was always weak in the language area- writing, focusing, explaining and comrehending. Those were the first to be seriously affected, and they continue to decline at a rapid rate. But somehow, he aces that stupid MMSE.
My DH could manage to drive but get lost he would. His language is strong though I think I am starting to see some change there as he seems to lose a word here and there now. But he reads and watches television but who knows how much he retains. The math is good and strong and he is fast with it. He walks slower now and that is for a variety of reasons largely to do with the vascular failure in his legs and neuropathy . Since his TIA his handwriting has changed a lot too.My sense is that since last spring there has been a little shift to the left so to speak. How fast things will decline I can't say. HIs brother says each time he comes up he sees slight changes. For sure if there are a lot of people he does not " join in any raindeer games".
acvann, the support group I'm in has been asked to form a panel to talk w/pre-med students to tell them (and answer their questions) about information a caregiver would like doctors to know. Seems like you're trying to do exactly that with your articles. Would "enjoy" reading your articles.
Judith - to get the Namenda the neurologist simply changed him from mild to moderate and the VA paid for it without question. He scores from 22-24 on the MMSE but he is still high functioning. My hb is on galantamine but the Namenda did not work out (side effects). From my understanding the VA will only cover aricept if galantamine doesn't work for them. I would ask the neurologist about changing the diagnosis so the VA will cover it. I don't understand why there has to be another big psych test. If the doctor is basing medication only on the MMSE score then I would ask for different neurologist. The VA will only prescribe for what the FDA has approved. Namenda has been approved for moderate to severe AD.