We just got back from a visit to the neurologist. He does the MMSE test on my DH often because he is enrolled in a study on the Exelon patch. His score had been holding at about 13 for about a year. Today the score was 4!! The same person administed it and was very consistent (I was there for each test). the neurologist feels that some of the reason is that DH started an extra 25 mg dose of Seroquel in the morning as well as at night. I hadn't really seen much difference in his functioning after adding the morning dose and thought that the agitation and anxiety were lessened. Has anyone else noticed a sharp drop in cognitive functioning with additional Seroquel? I am going to stop giving the morning dose and see what happens (at the neurologist's suggestion). We are going back in a month and I think he wants to see if his score stays as low. He said that it is very unusual to have such a steep drop.
FLgirl, all sorts of things can affect the MMSE. It really is not supposed to be used to track progression -- several studies have found that it is not reliable for that. I don't know why they keep using it for clinical trials.
My husband, for example, is very sensitive to stress. When he's way stressed about something, his score is in the basement. When he's happy, his score is still pretty high.
In most trials, they'll use a more extensive set of tests, but they also require a caregiver to participate, because even the more extensive set of tests may not reflect the patient's ability to function in the real world. The caregiver is extensively interviewed each time the patient is tested, and a score is assigned to the caregiver's observations and used to help evaluate efficacy.
So if YOU haven't seen a significant change in your husband, do not panic, particularly if you think his agitation and anxiety are improved.
Thanks, Sunshyne...they did do some extensive testing since his MMSE score had dropped so much. I haven't gotten the results of those so I don't know if they reflected such a big drop. He was able to read most of the words on cards in one of the tests... that surprised me. What he had not done well on the test are things that I see failing at home...following even 1 step directions (do what it says on this paper "close your eyes", he read it, but didn't do it), much less 3 step directions ("pick up the paper in your right hand, fold it in half, and put it on the floor"----he didn't even take the paper), short term memory (gave him 3 words and asked him immediately to repeat them and he couldn't remember any of them)...most of the rest he hasn't been able to do for a while. It was just a shock to see the number drop so much. It brings home the direction we're going in. I did recommend this website to anyone they see who has a spouse with Alzheimer's. I also stressed to both the neurologist and the study head how different it is with a spouse and how no one who has not gone through this can imagine what it is really like!
IN 2007 MY 61 YEAR OLD HUSBAND SCORE WAS 17- LAST MONTH WAS AT 8. BOTH MYSELF AND THE DOCTORS FEEL HE IS AT STAGE 5. HE IS MY CHILD NOW- AND THE TERRIBLE THING IS, HE ACTUALLY IS AWARE OF THIS DREADFUL DISEASE'S EFFECTS AND HE IS SO EMBARRASSED. EVERYTIME HE TAKES THIS TEST OR ANSWERS DOCTOR'S QUESTIONS, I CRY. I CRY AS IT IS SO HARD TO SEE MY POOR EMBARRASSED HUSBAND NOT KNOW MOST OF THE ANSWERS OR TASKS OF THE MMSE. DURING THE LAST FEW MONTHS, THERE HAS BEEN A RAPID DECLINE OR SHOULD I SAY A RAPID INCREASE? SIX MONTHS AGO HE COULD TURN ON THE MICROWAVE, WATER THE PLANTS, VACUUM, ETC., BUT NOT NOW.
Been so long since I looked at DW's records, this thread got me wondering about her last score. Going thru all records, the first time I was finally able to get her to agree to seeing a Neuro was April 2006. The records from that visit show quite a number of questions asked that she could not answer including simple calculations. However, the record shows no "score" as I'm sure he was convinced there was nothing wrong with her. Future visits with same Neuro resulted in no MMSE scores being recorded. Bouncing from specialist to specialist, I got her in to a new psych in January of 2007. Records from that first visit show a MMSE score of 17. Unfortunately, this guy simply could not make the diagnosis either. Had to be depression. Our visit to Mayo to finally get a diagnosis in June 2007, Neuro recorded a score of 8 on MMSE. Her level of functioning has steadily declined since then so can't even ponder a guess how she might score now and see no point in wasting a trip to Dr. just to find out. Thenneck
Thnneck, both the regular mini-mental (30 points) and the expanded mini-mental (50 points) are available online. If you want a rough idea of the score, just take a look. You could ask a few questions if you wanted to, but basically I estimated "single digits" on my 30 point test and he came out 11 points on the 50 point test when the doctor actually did it. My estimate was pretty accurate.
There were some surprises. He can read and proved that on the test. But he although he could read the words "Close your eyes" he couldn't follow the direction to close his eyes when he read it on the card he was given. He could follow the first of a two part direction that was given verbally, but not the second part.
rglennon, My husband also verbalizes that he has AD, that he knows he did not do well on the memory tests, etc. I can't say he is embarassed, but he is definitely aware of things that he cannot do that he should be able to. I, also, hate to sit and listen as he tries to remember the words, follow the commands, etc. I wonder if it makes it harder on my DH when I am sitting there to witness all that he cannot do. I was OK until the neurologist got to the part on the caregiver survey that asked how I felt about my husband's declining functions...then the floodgates opened. At least I had made them take my husband out of the room for the caregiver part. Why should he be in the room hearing about his delusions, frustrations, etc.? Even if he doesn't get it all, he gets enough to know that I'm talking about him and it's not good!
my husband's psychiatrist always asked his permission to talk to me alone. That was kinder than talking about his decline to his face. To this day I don't think Bill had a clue that he had a problem. The psychiatrist would shake his head and say-"he's clueless isn't he"
Thanks for asking Mary. I submitted my resignation Saturday. It was straight commission on luxury items & no one was buying. In the 3 weeks I was there they only sold 2 items during 2 weekends. Then Friday my husband had the movers bring all the furniture back into the house. Well, I sold a lot at consignment shops, not thinking I would be coming back here, and when I got home it was like a mish mash of stuff everywhere. So I have been busy trying to make the house look cohesive again. (And look for another job.)
The house might be easier to sell when the furniture is in there...at least that's what they say on HGTV. <grin> Good luck with the re-arranging and job hunting. Pet that beautiful cat of yours for me!
at our last neuro visit in July the doc seemed to have a very good feel for how DH's MMSE would go. He asked the nurse to take DH to another room. I assumed doc was going too when he opened the door for DH and nurse. But then he closed the door behind them, sat down and talked to me ...about ME!!!! He wanted to know if I was getting out at all, told me how important that was to my mental and physical health, and sided with me that DH's desire to get total knee replacement is a BAD IDEA! He coached me on when I should consider giving "an extra Risperdal" on a bad day, just once or twice a month.
With all the attention to me I forgot to ask about the MMSE score before leaving. The doctors facial expression when the nurse brought DH back in seemed to convey "I was afraid of that, but its not unexpected." Last month I did ask when I had to call about DH's anxiety/anger. It was 10, down from 16 or 18 just 6 months before. Now earlier in Sept when a social worker from senior services did it the only thing they "gave" him as a correct answer was the season. "FALL." lol........he says fall every time he's ever been given the MMSE. The soc wrkr smiled and said "close enough." As far as drawing, DH is an expert on that, so she replied, "true sign of an engineering dude." Made DH smile.
My DH is 59 years old was diagnosed last May 2008 with FTD his score was 23 in January 2009 it was 19 went to the doctor's on yesterday August 2009 it is now 12...He is a solid stage 5 showing some signs of 6. All the doctor said was he is declining rapidly because it being FTD and those patients decline much faster than an ALZ patient also he increased the Keppra XR which is used for seizures, also stataing the seizures cause the memory to just decline fast also it attacks the the frontal lobes. He added cerefolin NAC in additio to the aricept to see what happens. Is anyone else seeing a drastic drop or decline?
I am sorry that you are facing this situation. Every patient is different, but generally FTD can progress rather quickly, as seems to be the case with your husband. Sometimes there is a sharp decline and then a leveling off for an undetermined amount of time before there is another decline.
I wish I could be more help to you, but these diseases are brutal and follow their own path.
When I keep hearing progressing rather quickly....what does this mean compared to and Alzheimer patient say diagnosed at the same stage. I just need to know what I should be doing at this point. Should I be preparing for something that I may not know I don't know what to do and no one is saying to me OK you need to do this ....this ..this
angelb my husband has FTD. It raged like an oncoming train for the few diagnosed years. He has remained at end stage for the last two years-and holding there
Angelb, my husband was classic EOAD and the first MRI of his brain showed shrinking of the hippocampus.
There is no timetable for these diseases. I know of a case where the diagnosis was made and the patient was gone in a year. I also know of a case where the patient is still alive (if you want to call it that) after twenty years.
I would make sure that all the legal issues are in place and try to remember that you didn't cause this disease and you can't fix it.
I don't know why FTD progresses more quickly. Sometimes it doesn't. Everyone is different. As for preparation, I would advise that you do what everyone does when they get the diagnosis. See a certified Elder Law attorney and get all of the paperwork squared away. POA, health care proxy, wills, trusts, whatever. These attorneys are specialists and can guide you through the process rather smoothly. I don't know your financial situation, but if your husband is going to need Medicaid to pay for a nursing home, tell the attorney, and he will be able to guide you in the right direction.
Once all the paperwork is done, try to take one day at a time, and enjoy whatever good days you and your husband can have together. No one has a crystal ball, and it is impossible to tell how much time anyone with these dementia diseases has.