Change in MMSE score

[ann50]

My husband has been diagnosed with FTD.
His MMSE score last March was 27, his score this week was 10.
I have no idea whether this decline is rapid or normal, can anybody give me some advice please?
We have an appointment with his doctor shortly, is there anything in particular we should be asking?

 

[carolynp]

My husband has been diagnosed with FTD.
His MMSE score last March was 27, his score this week was 10.
I have no idea whether this decline is rapid or normal, can anybody give me some advice please?
We have an appointment with his doctor shortly, is there anything in particular we should be asking?

Hi Ann50. I’ve had a similar experience with my husband just two weeks ago. So I haven’t any answers but at least I can walk alongside you for a moment or two...
My husband has FTD too. In February 2017, my husband scored 15 out of 30 on the MMSE, administered by GP. This February, he scored 9 out of 30. The GP told me this is a significant drop and suggests rapid decline from here on.
Of course I googled like mad! Something I found said that an annual drop of 2 to 4 points on the MMSE is considered standard for someone with Alzheimers.
The test is regarded, or so I understand, as a rule of thumb only. A neurologist or geriatrician would administer FAR more extensive tests of greater depth. I also need to say that my husband is still doing very well, self care is fine, he still goes to the office (though retired, he has a shared room - he’s an academic) .... So, while the MMSE score suggests he’s running on fumes (empty tank), it actually doesn’t represent what he’s like, even now.
I suppose the test has to be taken seriously, particularly if you have OTHER concerns and need an objective estimate of what’s going on with your husband. But otherwise, try not to stress.
Two weeks ago, after my husband’s result, I got into a complete state of nerves - and didn’t even relate this to the fact that my husband got more morose at the same time. Then, when I decided I was going to put it out of my mind for the time being, and just get on with daily life - he suddenly cheered up. I’d had no idea how my worries were affecting him, though I should have known.
In your case, it matters if the test was administered by different people. Ours was done by the same doctor. BUT there is a huge amount of leeway in interpreting and scoring the results. So if different people administered your husband’s, this is likely to account, at least in part, for the discrepancy.
I hope this helps, I always feel information is better than uncertainty. I can’t make this better for you, but perhaps my recent experience may be of use. Good luck! Thinking of you.

 

[canary]

I just wanted to mention that the MMSE test was developed for Alzheimers and is a very good test for that, being able to generally predict how far advanced they are. It doesnt work very well with FTD, though.

 

[carolynp]

I just wanted to mention that the MMSE test was developed for Alzheimers and is a very good test for that, being able to generally predict how far advanced they are. It doesnt work very well with FTD, though.

Dear @canary I didn’t know this! Can you say more? Carolyn.

 

[canary]

Dear @canary I didn’t know this! Can you say more? Carolyn.

The early symptoms of Alzheimers tend to be problems with short-term memory loss and loss of space/time orientation (they dont know what day/month/year it is, are not sure where they are, get lost in familiar places etc), so the questions are skewed towards these symptoms and are pretty good at picking them up..

However, my OH with behavioural FTD knows exactly where and when he is and has no problems with short-term memory loss, so he aces the MMSE even though he has major problems with problem solving and tasks so can barely make himself a cup of coffee. It also does not address personality change and mood swings that are very early symptoms of bvFTD, but dont usually appear in Alzheimers till mid/late stages. Consequently, using the MMSE on people with bvFTD usually underestimates their problems.

People with semantic FTD or PPA have the opposite problem. The MMSE is very dependant on language and if you have early problems in that area you can score very badly, even if your functionality is still good.

 

[carolynp]

The early symptoms of Alzheimers tend to be problems with short-term memory loss and loss of space/time orientation (they dont know what day/month/year it is, are not sure where they are, get lost in familiar places etc), so the questions are skewed towards these symptoms and are pretty good at picking them up..

However, my OH with behavioural FTD knows exactly where and when he is and has no problems with short-term memory loss, so he aces the MMSE even though he has major problems with problem solving and tasks so can barely make himself a cup of coffee. It also does not address personality change and mood swings that are very early symptoms of bvFTD, but dont usually appear in Alzheimers till mid/late stages. Consequently, using the MMSE on people with bvFTD usually underestimates their problems.

People with semantic FTD or PPA have the opposite problem. The MMSE is very dependant on language and if you have early problems in that area you can score very badly, even if your functionality is still good.

Oh thank you so much, @canary. This is very helpful. My husband has the semantic form of FTD. I have felt there’s a marked discrepancy between his low scores on the MMSE and his general functionality. Not to understate his problems: but his self care, for example, has not changed in the past 12 months. I am going to relax about the test score then, at least for now. GP wanted me to call in the cavalry but I’ll wait and enjoy the present golden period instead. THANK YOU. Carolyn.

 

[ann50]

Thank you for your replies, they were really useful. I decided to wait until I had seen the doctor today before giving an update.
Basically, she said that after the initial assessment she does not like to give further testing as it’s not a useful tool. We all know that our loved ones are deteriorating and low scores are distressing, which I agree with.
I had asked her to do a frontal assessment battery; last July my husband scored six out of a possible 18 but when I looked at the test I realised that his score would be zero which would upset him.
He is currently reasonably independent, he can get himself up, washed, dressed and fed. Provided we stick to a routine we can have a reasonably ‘normal’ life so I will take that and refuse any further testing.
Thanks again for your support

 

[carolynp]

Thank you for your replies, they were really useful. I decided to wait until I had seen the doctor today before giving an update.
Basically, she said that after the initial assessment she does not like to give further testing as it’s not a useful tool. We all know that our loved ones are deteriorating and low scores are distressing, which I agree with.
I had asked her to do a frontal assessment battery; last July my husband scored six out of a possible 18 but when I looked at the test I realised that his score would be zero which would upset him.
He is currently reasonably independent, he can get himself up, washed, dressed and fed. Provided we stick to a routine we can have a reasonably ‘normal’ life so I will take that and refuse any further testing.
Thanks again for your support

Oh thank you too @ann50 this is really helpful to me too. I mean, your report on how it went with the doctor and what she said. You sound as though you’ve found a calm piece of ground on which to stand. Sometimes with the turbulence I feel as though I’m crossing a river in flood, rapids and so on, on stepping stones - but that the stepping stones themselves aren’t anchored, and keep moving! I hope you have a reasonably good weekend despite everything that’s going on. Best wishes. Carolyn.

 

[Lawson58]

The MMSE test was originally designed to determine the level of cognitive functioning and impairment in dementia patients, not specifically for Alzheimer's people.

My husband has 'non classical' Alzheimer's, which I think is one of those terms the doctors use when they don't really know but don't want to admit that they haven't got a clue.

He was diagnosed four years ago and it is just in the last few months that his short term memory is showing signs of being a problem. He has had long term memory issues for a long time. Needless to say he usually scores 27/30 on the MMSE but can't drive, can't use a mobile phone, can't handle banking, no problem solving skills and a few more things I could throw in for good measure.

The neuropsychological testing they did at the memory clinic was very revealing so I don't get too fussed about what shows up on the MMSE. As my husband hasn't had short term memory problems, I think he is so familiar with the test that it does not challenge him. It is always the same question that trips him up and I will become concerned when he starts getting some of the others wrong. He is still playing bridge but couldn't recall that my granddaughter had bought a car two years ago.

The rapid difference in result does sound very worrying but you know more about your husband than any test will show.

 

[chick1962]

I don’t really consider the MMSE score . For my husband it depends on the day. He can score really high 27 to 29 but also quite badly 18 to 20 . He has early onset AZ .

I don’t think the MMSE gives a true result . We all know with dementia one has good and bad days . I concentrate on how John is in general over a year period and that way I can pick up any declines however little they are and talk it through with consultants . Works better for me this way .

 

[canary]

The neuropsychological testing they did at the memory clinic was very revealing so I don't get too fussed about what shows up on the MMSE

I would definitely agree with that.
Neuropsychology testing is extremely helpful in cases of frontal lobe dementia (FTD, frontal lobe variant Alzheimers, vascular dementia affecting the frontal lobe etc) as it gives a much truer picture about what is going on.