My DH has gone from a 30 when we started this journey seven yrs ago, to a 22 , 6 months ago, to a 14 now. The doctor said if he gets much lower the alzheimer drugs wouldnt be helping. Have any of you been told this? Has your loved ones MME dropped this dramatically? I think my DH is probably 5th or 6th stage right now.
My DH has gone from a MMSE score of 21/22 when he was first dx'd in fall 2008 to a low score of 9 in summer 2012 to a score of 14 in early wintwr 2012. I believe he was in early stage 5 when he was dx'd in 2008 and is now in mid-late stage 6. I do believe the low score of 9 this past summer was because he was seeing a new doctor with whom he was unfamiliar and she made me leave the room when she was giving him the MMSE.
My husband has not been on any alzheimer drugs since 2008.
My husband couldn't score anything on the MMSE if his life depended on it. He was taken off Aricept in April 2010 and October 2012, the neuro said the Namenda was doing nothing. His dr. said he was end-stage in October. I have tried to get him completely off the Namenda, but have only gotten him down to 1 10mg every other day. If I could get something for aggression and agitation, I could probably get him off the Namenda. He takes liquid Keppra for seizures and liquid Neurontin for general pain, sleeping, and the twitching and jerking. We are on liquid meds as much as possible because I find it easier to use a syringe to squirt it in his mouth. Lloyd can do NOTHING except walk and he does that poorly. When he is awake, he paces constantly, stopping only to take a power nap and continue. I put his food in his mouth, tell him to chew and swallow, shower him, clean his teeth, dress him, put his medication in his mouth, hold a glass to his mouth for drinks, do all toileting needs (schedule helps to avoid accidents).
The MMSE test is an indicator of decline, and not all that reliable. Somehow mny Drs. seeit as a reliable measure. I know, ifd you've seen one case, you've seen one, but here'sour case. My DH had multiple Learning Disabilities and other than signing his na me couild neither read nor write. Simple addition and subtraction (not borowing) were hi9s limits. Administered orally, the MMSEwas used tin determining hgis Mental Illness in 1988. He remembered 2 of 3 items, cou.ld repeat sequenc esof numbers, forward and back. Could not spell world either way, nor read a passage. His score was low. Yet he coulod carry a conversation and no one was awae he esentially was uneducated, never having gotten through grade school. He couldn't read a bluerprint, but could build a able customized for a certain location and of a specific size. In 2006, the MMSE was a component of his Dx of VaD. He scored 14, without spelling world, reading a passage, could remember only one word of 3, could only repeat short number sequences, but could still draw a clock. At his last Dr. appointment (in Office) the nurse started giving him the MMSE. The first couple questions were okay, but then she asked him to spell world. Without thinking, I said, "He's Learning Disabled. He can't read or write." The very next thing, she handed him a sheet of paper and asked him to read the first paragraph. . . . I realized mmediately, that I shouldn't have spokn (first time I ever had), but hiscondition was clearly recorded in his file, as was the on going record of the disease progression. When Diagnosed with VaD he scored 14(?) and was at the end of Stage 4. He was in early Stage 6 and his score was leshan 11 at that appointment. Yes, he declined and so did his scores, but even the day before he died, he knew me,. We had an excellent visit. We also, discussed the fact his CHF was getting worse and he would eventually die. He was very worried about that, but was much more calm and accepting after I reminded him of our belief that only God knows when it's our time. Further, that when He told DH, then DH would know, but until then we weren't going to worry about it. In my mind the MMSE didn't come close to measuring how he really was doing.
My frustration with that test is well documented in blogs and discussions on this board. It drives me CRAZY that the neurologists seem to determine all functioning based on that stupid test. Sid has always done well on it - never scores lower than a 26, except once, when he got a 21 - must have been having a bad day. Last time we saw his neurologist (about 9 months ago, maybe longer), he said that according to his records, Sid hadn't declined in the 6 years he had been seeing him!!! Simply because he did well on the MME. Even if I didn't live with him every day, and know how far he has declined in each area, all I have to do is read my blogs from 2 years ago to see the difference in him now.
My DH scored a 9 on the MMSE in December. Six months ago it was 15. The neurologist seemed very surprised at the decline. I was not surprised because I have seen the decline every day. He has had AD for about 10 years at least, was diagnosed in 2006. He is on Razadyne, has been on Namenda with no results. The neurologist took him off the Namenda 8 months ago, because he saw no improvement with it. He started him on the Namenda in December, but this time it seemed to cause agitation.I continue to see almost daily decline. He needs help with everything. he wants to eat all the time, but needs me to get it for him. I asked him to pour himself some milk, he asked where the milk was. The test seem to follow the decline fairly well in his case. I doubt if there is any medication that will improve his declines.
My DH scored 21...however, I don't believe this is an indicator on the FTD or maybe it is. Does anyone know?????....his memory isn'tall that bad nor are his coping skills as he's operates on "auto pilot. However, his lack of judgement is terrible. Does anyone know what a 21 score equals in stages?
My husband went from an 18 to a 13 in 6 months. The last time we saw the doctor she did not even do the test--I think to spare me the bad news. Anyway when i started this journey in 2008 the results of that test would always depress me. But now it does not--so I guess I have made some progress. I never started Namenda because I felt he was on enough meds and just could not see starting yet another medicine. I am to the point now where I am going to place him. I have found an assisted living that will accept the Medicaid waiver and just now have to take that first step. I am trying my best to do things sooner rather than later as has been well documented in this blog. I ask myself what would be the reason for keeping him home a little longer--I guess I would continue to get his SS a little longer and the big thing is that he could continue to be "comfortable" in his own surroundings. But then I ask myself but what about me?? What will keeping him home a little longer do to me?? Like maryd above, he wants to eat all the time but cannot fix anything to eat for himself. This is highly unusual for him because he always ate like a bird. What infuriates me is that so many people who do not understand the disease tell me, "but he looks so good." I am ready to wring their necks. Living with this disease is like nothing else.
lulliebird, my husband has FTD probably mixed with AD. The doctors still use the MMSE to judge the level of his cognition and to identify any changes (usually a decline). A "normal" score is 25-30, mild dementia is 19-24, moderate is 10-19 and anything less than a score of 10 is considered severe. As many here have said (including Joan) their spouse's score on the MMSE doesn't reflect the persons true level of impairment.
According to the Fisher Center, mild cognitive impairment would be stages 3-4, therefore you could extrapolate that his score of 21 on the MMSE would mean he's in stage3 or 4. When my husband was scoring 21/22 on the MMSE in 2008 based on other neuropsycological tests he was probably in ealy-mid stage 5. Education level has alot to do with scoring - the drs told me that the reason my dh was scoring at 21/22 was due to his excellent math skills and verbal ability at that time. He has now lost most of his ability for both.
Co2, I wish you the best in your decision. People mean well, but they haven't a clue what alzheimers disease is until they become a caregiver. Seeing them for a brief time doesn't give them the total picture because, as we know, they develop coping skills which mask their disablilities. Just yesterday I came upon a medical evaulation by a psy. who examined my spouse. She wrote a positive report about his cognitive abilities. Funny..she never met me...never received my input..nor asked. She was gullible and believed everything spouse said was Gospel. In the report spouse inaccuracy protrayed a living suitation which was not. I was painted as a controling bitch who had only self-interests at hand. I couldn't believe that someone who was so called "educated" in dementia who fall hook line and stinker for these coping skills and lies. These so called professionls are harmful for the patient as they do not get the proper evaulation. My spouse, by all practical purposes, should have lost his drivers' license 2 years ago, but because of this inaccurate report he was allowed to place himself and others in danger. Of course, because his medicare covered this medical evaulation I could not seek out a second opinion without paying for it out of pocket. Plus I don't believe that spouse's primary care physican would have ordered another evaluation as he was the doctor who referred spouse to her. It wasn't until I moved to another state that the doctor's evaulated spouse and found that because of his FTD his judgement was severly impaired and reported this to motor vehicles in the state which we currently reside. So if a doctor can be blindsided by the disease surely family and friends can be!
lulliebird, you may want to join the association for frontal temporal degeneration (www.theaftd.org) and read their boards as well since your dh has FTD.
Two points. 1. The MMSE was never designed to test for Alzheimer's and has already been discredited in recent research. It continues to be used, and misused, because time pressured doctors can administer and score it so quickly. 2. NONE of the 5 FDA approved Alzheimer's meds are effective beyond a few months for some people, but none are effective for ANY person with Alzheimer's after 2 years at BEST! Recent research cited in the Washington Post on Jan. 7 and the 2011-2012 NIH study just released this week both confirm that fact. However, too many doctors refuse to tell patients and caregivers that beyond a few months for MOST people, and beyond 1-2 years for ALL people with Alzheimer's, these meds are no longer effective in slowing the rate of decline ... if they ever were effective at all in the first place!
I totally respect education. I was in the field for over 25 years. I know the hard work it takes to stay informed of all the new advances in one's field. I know that these doctors, psychologists, and psychiatrists "know their stuff". HOWEVER, I sometimes wonder what is going on with them. When Sid was in the middle of his two-year "rage" period, verbally abusing me, angry all of the time over having his driving taken away, the psychiatrist, who specialized in dementia, told the neurologist that she couldn't see anything wrong with Sid and saw no reason why he couldn't drive!!!!!!!!!!!!!!! He acted perfectly normal sitting in front of her, and by the time we got to the elevator, he had forgotten everything she said except that he should be able to drive.
Last year, because the neurologist said, according to the MME, Sid hadn't declined in 6 years, I insisted on a complete neruopsych. eval. Regardless of the fact that Sid told the neuropsych that he had no memory of meeting him 6 years prior when he did the first exam, nor had any memory of the first exam or the office, the neuropsych insisted Sid didn't remember because he wasn't trying hard enough. The guy asked Sid if it was an election year - Sid had no clue. He asked him if we were fighting any war. Sid said there must be some wars going on somewhere in the world. After 2 1/2 hours of testing, the scores indicated that Sid had declined anywhere from 10-20% in most areas in six years. The neuropsych report said that there was no evidence of global dementia. The low scores were because Sid wasn't pushing himself enough.
Having done plenty of language learning disability testing myself for 10 years, I know for sure that some people function better than they test and others test better than they function. For that reason, I always took into consideration what the teacher and parent said about the child's functioning when I wrote my reports. Unfortunately, for a reason that remains a mystery to me, many of the doctors our spouses see seem to think that WE are the ones with the problem.
I feel very confident in the doc who gave the MME. He took his time and was very patient. My DH has just gone down that rapidly. He is still able to walk with no problem. He takes his own showers with my urging, He has had one episode each of incontinence in the past couple weeks, and tried to clean it up himself before I saw it. But having said that he is definitely a lot worse cognitively. He needs complete meal setup. I am taking the orders of my doc and will continue the meds. He said it may throw him into a big cognitive decline and I dont want to take the chance.
My experience with AD, caregiving, research & writing goes back 20 years. Little has changed, including the medical field. I was lucky, had one or two good docs & others were simply out to lunch and had no idea what was really happening in our home because of AD or even seemed to care when I told them. One doc actually prescribed testosterone for DH! Had occasion to speak to an auditorium of AD medical people at UCLA & told them that the MMSE may be good for them to determine progress, but it meant NOTHING to someone fighting for the car keys at 2a.m. It is useless information for the caregiver. We know what the progress is with or w/out an MMSE, we live with it 24/7, we don't need no stinkin' chart! And from what I remember about it, there are many issues that are NOT addressed. We know AD is not just memory loss.
So KY caregiver, etc. you might choose to just forget about MMSE, adjust yourself to the changes you have to deal with each day. And as much as I'd like to put faith in drugs or everything from vitamins to coconut oil, in 20 years I have not seen or heard of any spectacular results in the general AD population. Yes, sometimes someone does well on one thing or another--everyone is different and the disease is so elusive no one really knows just what someone has--maybe AD, maybe FTD, maybe something no one has a name for--and, of course, do as your doctor says re meds, don't shake the boat.
I wish this site had been around for me 20 yrs ago, it is, by far, the best thing that has happened to AD spouses in all that time. Parent care is something else, just as difficult with different problems. Advice from other spouses here is the best you'll ever get. Just take it day by day, adjust to his changes, and love him, love him, love him, trust your gut and you'll do OK.
There is a test used by Occupational Therapists that is supposed to be much more reliable for dementia. The MMSE was designed for people with schizophrenia, to help define how much of their problems might be assigned to cognitive issues. My wife scored 29/30 on her last MMSE, an improvement over a year before. But some issues were clearly worse and the neurologist write that there was cognitive loss.
A few years ago, Washington University, St. Louis devised and used the AD8, an 8 question screening test administered to caregivers, not patients. It's even shorter to administer and score than the MMSE ... but guess what? Several research studies have now confirmed that the AD8 is a more effective screening device than the MMSE. That should be no surprise to us 24/7 caregivers since we observe our spouses daily in the real world. My wife's MMSE score didn't drop below 25 until she was in her second year of moderate stage, or stage 5. Even docs at Mount Sinai Medical Center, one of our country's premier Alzheimerer's Disease Research Centers, were surprised at her MMSE score each year. As a participant in an international research study, my wife receives a free comprehensive testing battery evaluation once a year at Mount Sinai. There are a dozen different tests, some with several subtests, and as her caregiver I am also interviewed extensively each year. Three years ago she had already started scoring at the 5th percentile or lower on several of these tests. Two years ago, she scored at less than the 1st percentile on more than a dozen subests. But on that stupid MMSE, she kept scoring 25 or higher!