My husband has an appointment on the 12th with the neuropsycologist. This is the doctor who had my dh take 3 -3hour tests last year and dx'd the Alz. I'm not sure what he will do other than give a test to see if dh is worse or about the same. I don't THINK my husband has changed too much. Now and then he comes up with something off the wall but most of the time he is "normal". I'm sure some of you have had a neuropsycologist test your LO...do you have an opinion on if they are good bad or indifferent? I have to call the office first and make sure we still have the appointment...when it was made last year we were told it could change!
My DH had a 5 hour neuropsych test several months ago. Then went thru EEG, MRI and PET/CT scans. Neurologist dx'd MCI. No dementia. Neuropsychologist didn't think it was anywhere close to AZ....closer to FTD but testing didn't show any frontal problems at all. I don't see FTD symptoms. He has been absolutely perfect for the past week. I haven't seen signs of anything. ANYTHING. Go figure.
Jean, I'm kind of in the indifferent category, I guess. My husband has had all sorts of testing, for a longitudinal study (I'm still waiting for the results from the third year evaluation), and for a clinical trial. Certainly, the longer neuropsych testing tells you more than the MMSE (which may be useful in confirming that more testing is warranted to make a diagnosis of dementia, but not much more than that!)
But the results can be strongly affected by the person doing the testing. My husband had a bad time with one tester during the longitudinal last year, and his test results were much worse than I thought they should be. I discussed this with the PA coordinating the study, and she confirmed that the tester can influence the results, and for that reason, they try to assign the same testers to a given patient every year. (My husband had to have someone else assigned to him this year, he went into a total meltdown in reaction to the same woman, and I refused to let him stay in the study if they kept assigning her to him. I'm expecting better scores this year, since he really liked the new person who replaced her.)
Sheila, that's very promising. MCI does NOT always progress to dementia. Some people with MCI remain stable, while some even revert to normal. I'll keep my fingers crossed for you!!! (Might make it difficult to type, but all in a good cause! :-)
Jean21 - When you go for your appt this year, you might ask them if they are doing the "MMSE" testing and ask for the test score from last year & then compare it to "this year's" test, once they are through with his testing. When my husband was diagnosed 4 years ago, his MMSE was 26. Over the last 4 years it has declined steadily, and we are now at a 3. Of course, I knew he was getting worse, but the score kidna put it into perspective for me...kinda gave it a "place" to fall. It might be of interest to you too to follow it over time. I had read the book by David Sheink (sp?) that talked about the MMSE and what it meant, etc. early in his diagnosis so I guess that's why I locked into it -- plus, that was what they usually did to 'test' him when we went to the neurologist. Of course, you're going to a different type of dr. so they might do diff testing. Hope it goes well!!
natsmom: what is the book by David Sheink? I would love to know what someone, anyone with expert knowledge says about the MMSE test, My DH scored 25 and his neuro said that was borderline and then he went for the 2 hour test. When he had the 2 hour test he was rated moderate to severe. He has been on a downhill path since then. This was 9 mos. ago. He is 61.
The usefulness of the MMSE is open to debate. I've seen research studies which concluded that the MMSE can provide insight into the regions of the brain that are affected, and may provide clues as to the underlying cause (i.e., can sometimes be helpful in differentiating among some, but certainly not all, causes of dementia), but that it can NOT be used to judge the progression of the disease.
MMSE scores can bounce around all over the place, depending on how the patient is feeling at the time s/he takes the test and the conditions under which it is given (e.g., are there distracting noises or lights). In addition, the results can be affected by the person who administers the test. Plus, few people who administer it have actually been trained in how to give the test or how to correctly interpret the results.
If you want truly useful information on the current status of a patient, then a much more extensive neuropsych evaluation is needed. But even so, the tester can influence the results.
I wouldn't actually give the test myself, but you could just estimate what the score would be and be pretty close to what would actually happen. My husband's neurologist uses the clock drawing rather than the counting back by 7. At first I thought I'd fail the counting back by 7, but realized that I could work it out and THAT (working it out) is what is really being tested. I'm dyslexic and math was one of my downfalls.
Now, see, drawing the clock and counting backwards by sevens measure two ENTIRELY different types of cognitive function. He shouldn't be replacing one with the other. Yes, they typically give a total score, but it is much more important to know which TYPES of questions are problematic -- the types of wrong responses should actually be clumped according to what they evaluate.
(Note that only the first five answers for counting backwards by sevens are used ... you and I could probably get by, by memorizing those, Starling!)
After I took another look at the test I realized that he actually uses "world" spelled backwards instead of the counting backwards by 7.
As for the memorizing, that is what I can't do. <grin> I'm actually using Kakuro puzzles to FINALLY learn how to add. There was a combination of being too young for the grade I was in, a really weird school where I was pulled into and out of the class for borderline retarded children so often that I missed huge parts of basic math. But if you give me enough time I can work it out. I know because a while back I decided to try. I can go back at least 5 times. At that point what you do to work it out repeats so there is no need to continue.
By the way, I had a friend in that class who also did not belong there. Straight As in Nursing school when RNs went for 2 years to a hospital school. Got her BA even though she was grandfathered, and had been accepted to a master's program in biochemistry the last time I saw her. She spent 6 years in those classes and was too "stupid" to be allowed to take a language in Jr. High. We both got out of the pit they put us in by going to a very unusual vocational high school. At a time when accidemic high schools were doing very well to have 10% of the graduating class go to further education, more than 25% of our class went on. Both of us also ended up taking a full accademic program including NY State regents exams.
JudithKB - I spelled his name wrong, it's David Shenk, but here's a link for the book: http://www.bookreporter.com/reviews/0385498381.asp It's called: The Forgetting Alzheimer's: Portrait of an Epidemic After I watched the PBS documentary back in 2004, I then found the book & read more & more to get information on what I would be dealing with. It was a big help to me. I hope you find it helpful as well. I have found it @ Border's books here in Texas many times.
As for the MMSE test itself, my husband has had the test administered over our 4 years by the same neurologist and/or staff person repeatedly, so basically, the same person has administered the test each time...I have asked for the scores each and every time and each & every time it has decreased over these 4 years. I was basically asking because we were in the Flurizan trial, and I wanted to know if the medication was helping as it didn't seem to be allowing him to "hold his own" in areas of daily living around the house ~ I was right -- it wasn't working :(
The MMSE isn't a "tell all" test, but for "abilities and cognitive function", it pretty well spells it out for us. My husband isn't able to do much consistently, if at all to help in daily chores, or to help himself with daily living functions...but he is still a lovely man, smiles, hugs, jumps at the chance to eat ice cream if offered, laughs @ Seinfield episodes, despises Bill Clinton! HA! Some things just don't change!! LOL!!
Jean21 - I do hope your appt on the 12th goes well & that you find out what you need to know in order to deal better with your husband.
My DH wouldn't go back to the neuro if you paid him to go. He told me he hates that guy's guts. Says he doesn't know anything and he got tired of him asking all those silly questions. What difference does it make, anyway, (he says).
He has agreed to return to our GP. Thinks he is an ok guy. If the GP recommends another dr or tests, DH will probably do that.
Sure don't have any idea what the original neuro did to upset him, but I think it was an ego thing because DH couldn't answer all the questions and it made him feel funny.
Mawzy, Our LO's always have some "reason" why they are fine. I wasn't paying attention, I did something stupid, etc. Or in the case of your DH, the neuro doesn't know anything and he was tired (unable?) to answer those "silly" questions.
I think it is more a question of that than the neuro did anything specific.
PatB and Mawzy, my husband will give you all sorts of reasons why he has trouble with something. "I wasn't paying attention", "I've never cared about things like that", you name it.
BUT ... I think that the neuro most definitely IS doing something to upset the patient, and that is: the neuro is making it clear to the patient that s/he isn't answering the questions correctly. That the neuro is indeed setting up "an ego thing", angering and frustrating and insulting (implicitly, not explicitly) our AD husbands who are used to doing well, being successful.
This has been very clear with my husband, in the longitudinal study and the clinical trials. The longitudinal study is once a year (we've just finished the third exam), the clinical trial was every 6 to 12 weeks for two years. The clinical trial exams have gone great; my husband enjoys them, he and the PA who tests him are always in the middle of a shared story or joke when I'm called in after they're done. She praises how well he's done to me, right in front of him. She sometimes mentions concerns to me, but only when he's not present.
The longitudinal study is another matter. The first year, my husband was reasonably cooperative. The second year, about 45 minutes into the "memory testing", they had to stop the test because he was getting all upset. He struggled to tell me what was wrong. It was very clear to me that the tester had been condescending and argumentative with him. He's used to being the big exec, shown loads of respect, and he wouldn't tolerate that kind of behavior for two seconds (especially from someone 50 years younger.)
I spent a lot of time talking with him, and then with her. She kept telling me that the tests are very difficult, the patients become frustrated because they aren't doing well, and they blame her. She said lots of them react that way. It's all due to the test, couldn't possibly be due to anything SHE is doing. She came across as being very bullheaded, and wouldn't listen to a word I said. I can just imagine how my husband would react.
I won't bore you with what I went through to get my husband to give her another chance, and to try to get the tester to even entertain the concept that SHE might actually be doing something that upsets him. He agreed to try again. He made it through the test, but was not a happy camper. Neuro testing (motor skills etc) went just fine, as they had the first year.
Fast forward to this year's memory testing: he went into total meltdown within 15 minutes. We had several long talks. To be honest, I was appalled and frightened by his reaction -- he is genuinely afraid she will cause him psychological damage. He described her as behaving as though she is military intelligence interrogating a terrorist, or a police detective interrogating a criminal. He says she is arbitrary and confusing, jumps from one thing to another, and he doesn't know what she WANTS. He describes her as being aggressive and argumentative, that she "sets up confrontations". I pointed out that the PA in the clinical trial tests him all the time without a problem, and she's a pretty outspoken sort. He said the PA "solicits information" -- the other woman "interrogates".
So I laid down some rules, and one of them was that Ms Bullhead was NEVER to be assigned to him again.
New memory tester, another woman and every bit as young. She asked to meet with me first, to get my feel on what is going wrong. I told her that in my opinion, the patients could not possibly know that they're doing badly unless the tester TELLS them they are, either flat-out in words, or by the way the tester reacts. My husband is VERY sensitive to body English. I gave the new tester some examples of what my husband said had happened to cause the melt down -- the tester had flat-out told him he was wrong, and argued with him when he tried to explain why he thought he was right, and he had clearly become more and more frustrated trying to communicate with her. I also told her that I had been allowed to sit in on some of the motor skill testing the first year, and described the neuro's approach -- always gentle, smiling, encouraging, a little playful, everything is fine, everything is great. My husband wasn't doing at all well on the motor skill tests, but he didn't KNOW that, and he liked the neuro just fine.
So the second memory tester now inherits a patient who is being very mulish about being tested again, still very upset over the recent, abortive attempt with Ms Bullhead. He goes into the room upset and angry. Hours later, he comes out laughing with her over some story she told, he's all excited by having done very well on the tests, there's only one question that was a little hard and he wants me to tell him when I get the results so he'll know if he got that one right.
We had a lunch break before the motor testing. He spent much of that telling me about the new tester, she'd been very interested in his travels overseas, yadda yadda yadda. She treated him like a human being, someone who had something to offer, someone she respected and admired. He went into the neuro testing in a good mood, came out in a good mood, perfectly happy to continue in the study next year.
I don't have the results yet, but I know he didn't do well. He has too many problems. He probably did better this year than last year, though, because this year, he had a tester who encouraged him rather than belittled him.
My DH got do mad with the doctor that he got up and walked out. When the doctor asked me what was the matter. I told her that he didn't like the way she questioned him, like he was a little kid, talking down to him etc. Well I got him to go back in and I stayed there to see how it was going. She changed the way she asked the questions and had like a little conversation in between and he was just fine with that.
I have to chime in here. I did language evaluation testing for YEARS. For years before that, I sat in on testing to learn how it was done. An evaluator is NEVER supposed to tell a client if they are right or wrong. They are supposed to be encouraging, make them feel comfortable, which is an individual thing, depending upon each evaluator's personality and each client's personality. They are supposed to reassure the client that they are doing fine, not to worry. My best line was always - "These test are more for ME than for you. They're to let ME know where your strengths and weaknesses are, so I can help you." Then I always made a joke about it - saying - "They're for ME, but you have to do the work." Obviously, some of that won't work with AD patients, but the idea is the same - you make the client/patient feel comfortable with you, develop a rapport, and DON'T criticize.
If they wanted to know how they did on the test when it was finished, I always said - "Geez, I''m not that good. I can't remember everything you did. You have to give me a chance to go over everything, and when it's all done, you can sit in on the meeting with your parents and me. Then I'll tell you how we can help you." Again, that won't necessarily work with AD patients, but as I said - the idea is the same - COMFORT LEVEL.
bluedaze -- All of the NIH-funded AD Research Centers are participating in the longitudinal study, and it's been going on for years. It's a study that tracks the course of the dementia. To be accepted into the study, the AD patient must have a caregiver who spends a lot of time with the patient, and knows how he functions from day to day. Once a year, the patient undergoes a thorough examination -- blood workup, physical, and extensive neuropsych testing. While the patient is busy with those, the caregiver is interviewed, on how the patient is doing -- are there obsessive-compulsive behaviors, can the patient do chores, any problems expressing themselves, any problems walking, any unacceptable sexual behaviors, on and on and on. All the stuff we talk about here, on these boards. If the participants are willing, this testing will go on until the patient dies; and we had to sign a release that we agree the patient will have a brain biopsy done at that time.
There are a bunch of things they're hoping to accomplish with this very large study. For example, they're looking for symptoms that might help identify AD in its earliest stages. They're looking for symptoms that might be used to predict the course of the disease in a given patient -- so that someday, we may be able to predict which patients will have problems with aggression, or hallucinations, stuff like that, and maybe we can prevent the symptoms before they ever actually start up. Or symptoms that can be used to predict how rapidly a given patient will decline. Perhaps they can find correlations between certain medicines or dietary supplements and the course of the disease. They've taken a pretty thorough history of the patient's family (relatives who did and did not express dementia symptoms, what relationship to the patient, the age of dementia onset, how old they were when they died, whether the dementia may have been caused by x, y, or z), that can be used to look for links there. And, although nobody has ever actually said this to me, I suspect that the data will be mined to help determine whether AD is a family of disorders, and how we can identify different disorders within that family. They're collecting enough data that they may be able to come up with new questions they want to answer, and the data will already be available when that happens.
We went to the neuropsycologist this morning and he didn't do the mini tests. I gathered he doesn't have a lot of faith in them...he thinks the results depend on how the patient is at the time, tired, angry, depressed or whatever. He also said a drop of a couple of points doesn't mean a lot but if someone was to go from 28 to 15 or so that would be something to pay attention to.
He wanted my DH to take the 3-3 hour tests like he did last year. DH flatly refused, he told me later that if he was younger he would take the tests but feels like at his age it wouldn't mean much anyway. So I guess until we go to his neurologist in October we will just keep plodding along.
Thanks Starling, I went to the sites and have downloaded the tests. I've been thinking about the neuropsycologist and wondering if it is worth going to see him if he isn't doing anything but asking questions. The only test he seems to want to do is the 3-3hour one and DH will not do it again. There doesn't seem to be much point in going to him if we are no wiser when we leave. I knew my DH hadn't progressed very much and that the Aricept was helping him and that is about all we learned from the appointment yesterday! The next appointment is next August so I will wait and see how my husband is then and if he wants to keep the appointment.
We are still going to the neurology appointments. They never did any of the big tests on him because of his cognitive therapist who basically had already handled that. But they did do an extended mini-mental on the first visit and asked a lot of similar questions on all additional visits. They also used the tuning fork on him and had him do some physical tests like touching his nose with his eyes closed.
I'm no longer doing invasive testing on my husband. He is getting blood tests and pacemaker checks, and whatever goes on in the neurology appointments.
My husband's cardiologist, who had probably seen the dementia diagnosis, stopped all testing in January right after the stress test. He was going there twice a year, but we probably aren't going there again unless they call me for an appointment in January or February.
His family doctor is handling all prescription refills and all blood testing. If you really think that enough is enough, get your husband's family doctor on board and do what you think is best. Family doctors can prescribe any drugs that need to be prescribed.
Starling, We go to the neurologist in October....he is the one who sent us to the neuropsycologist. He will probably do the MMSE test as he has done it the first time we went and a few months ago so maybe he will find a difference or NOT!
Jean21 - We also had appointments yesterday. The AM with the GP was rescheduled when I was told we would be seeing the nurse practitioner, who knows nothing about Hank. The PM with the urologist only eliminated what I considered a problem - apparently those PSA counts can go in to the hundreds, so being 21+ seems to be nothing really. And, nothing can be done about the constant urge to pee. Bottom line, the AD doctor thinks I need to place him, but I want to try the day care first. However, we haven't got the drugs working yet, and I just now feel in limbo. If things continue on as they are right now (which seems to get worse daily) then I might not be able to take care of him period. I feel incredibly sad about all of this...
Frand, My DH isn't too bad at all...other than his short term memory I don't see much change in him. DH had his prostate removed several years ago. He was lucky, the cancer was a 1/2 inch from his lymph nodes. I guess a lot of this AD is waiting for something to happen and when it does waiting for the meds to work. In the meantime the CG's just wait and worry!