MMSE Results not representative of condition

pinkotron

Registered User
Jun 30, 2017
11
0
Hi,

Looking for some empathy.

Mom has been diagnosed with AD and with spread the the front of her brain (based on in depth cognitive testing). She refuses to have a brain scan because she doesn't believe she is ill so doesn't need any investigation.

She has recently been seen by the memory clinic who seem to base their whole world around the results of mini mental state test. Mom has been scoring about 26 or 27 e.g not that bad.

Mom had a full set of cognitive tests which actually showed all of her skills are very impaired or very severely impaired compared to a pre-morbid estimate and that her condition is already quite advanced.

In reality, if left to her own devices she doesn't eat, drink, do any personal care, she can't initiate tasks eg pick up the phone, make a meal, dress/undress, remember to take her drugs etc. Due to her lack of food, even with supplements her weight is going down week on week. BMI is about 17 now.
She is on the surface, lucid and knows who you are and what is going on but her reasoning about her health and self awareness of her condition is virtually nil.
First symptom onset was probably 5 years ago. She regularly chokes on her evening meal even on a soft diet. She now has carers twice a day to help remind her to do activities of daily living but she often won't allow them to help because she thinks she doesn't need help or that she has already done the tasks herself or will do them later.

Her memory symptoms have only really been in the last 9 months.

My irritation has been that I'm trying to get my mom to accept a bit of help in the last 3 months and convince her that she should keep on having carers and accepting help with personal care only for some person to come in and administer a basic MMSE test and decree that her memory isn't that bad anyway. Mom then interprets this as "I'm fine and I don't want all of this fuss, this person says I'm not that bad anyway and I'd be OK if you all just left me alone"

There seems to be a bit of a lack of understanding of presentations of dementia that don't centre around being forgetful and being disorientated.

Has anyone else had this?
 

LadyA

Registered User
Oct 19, 2009
13,730
0
Ireland
Ooohh, yes! My late husband was scoring very high on the tests until he was in the late-moderate stages of the illness. His Dementia was obvious. His doctors knew he had it. But when it came to the tests...! Until the day came when he suddenly didn't score highly. He had a very sudden large drop in his scores, which interestingly, did not correspond with a large deterioration in his condition at the time! Seemed like his ability to do the tests had sort of "caught up" with his illness.

Dementia has all sorts of wrinkles!
 

canary

Registered User
Feb 25, 2014
25,018
0
South coast
Yes, exactly the same with my OH. He too can pass the MMSE easily. He has FTD and I gather that this is typical of people whose dementia affects their frontal lobes. You are right in saying that this makes people not realise how he really is - most people (including medical staff, mores the pity) equate dementia with memory loss.
 

BeardyD

Registered User
Jan 19, 2016
89
0
4 years ago my wife was still driving and organising her, and my, life. She scored 18 on the MMSE.

Now she can do nothing for herself, can't find her way around the house and if she goes to the toilet she doesn't know what to do when she gets there. Yet she still scores 18 on the MMSE. She can't sign her name but she can draw a clock and put the time on it.

So on each visit to the Memory Clinic she goes into full hostess mode, scores the same on the test and gets told that she is stable - after all they've got a number and a number must be right. I get branded as the whinging husband.

You can find whatever figures you want for the accuracy of MMSE (and most other tests) but it will typically be less than 70% accurate when tested across the full range of age and type of dementia. Unfortunately the medical world treats the tests as gospel.

The NHS guide for GPs includes the statement "Being able to draw a perfect clock, to all intents and purposes, renders a diagnosis of dementia unlikely". Perhaps your Mom can draw a clock and therefore "can't have dementia".

If you want to record some evidence yourself try the Bristol Activities of Daily Living Scale http://www.wellnessofmind.com/wp-co.../Bristol-Activities-of-Daily-Living-Scale.pdf. I believe it is used by some medical staff but I've never come across it.
 

Lawson58

Registered User
Aug 1, 2014
4,333
0
Victoria, Australia
OH has always scored well on the MMSE test and the other one they use which I think is the Montreal test. He still plays bridge four times a week but cannot use a mobile phone, cannot drive a car, long term memory shot, gets confused over things he hears and misinterprets other information, gets terribly paranoid and did poorly on the long tests administered at the memory clinic.

So in my humble opinion memory testing in only one part of a diagnosis and no one should make the call on that alone.
 

northumbrian_k

Volunteer Host
Mar 2, 2017
4,418
0
Newcastle
This ought to be obvious to anyone who has come into contact with how dementia alters perception and personality, not just memory, concentration and understanding. That ought to include clinical staff who work in so-called memory clinics but sadly this is not always (or often) the case. Perhaps the term 'Memory Clinic' is a misnomer, or if memory is primarily what these places are interested in, then some other kind of resource that looks at dementia in the round is required. In our case, although my wife's memory has been getting steadily worse and she has done badly on the tests, it is not this that causes the most distress. I struggled to get any of the clinical staff to listen to and understand how badly my wife's paranoia and perceptual issues affects the quality of our life together. To them it all seemed about memory, although as someone else said, I am here to act as her memory for the things that really matter.

Memory tests only skim the surface of what dementia does to individuals and families. As a layman I know this, although my wife's condition is a lot less advanced than others I read about on TP. Maybe a few more clinicians should spend some time reading these forums!
 

Soobee

Registered User
Aug 22, 2009
2,731
0
South
mum scored 28-29 on MMSEs after she'd had TIAs (mini strokes) and most of her memory wasn't affected for a long time after diagnosis.

Her major problem was with sequencing - remembering what to do next in a task "how do I make dinner?"; "how do I get up off this chair?"
 

pinkotron

Registered User
Jun 30, 2017
11
0
Thanks to all who have replied so far. It's reassuring to hear that it's not just me that has come across this.

I have always doubted the altzhimers part of my moms diagnosis, erring more towards FTD given it's relatively early onset around 70-72 years of age.

However she doesn't have some of the more extreme behavioural changes associated with FTD, her personality has changed but it's been a bit more subtle.

I understand that people with FTD seem to exhibit memory loss in the later stages, which is what I think we are seeing now.

My only concern is because they believe it is AD they are going to try her on Donepezil, which I understand can cause problems if it is FTD.
 

pinkotron

Registered User
Jun 30, 2017
11
0
If you want to record some evidence yourself try the Bristol Activities of Daily Living Scale. I believe it is used by some medical staff but I've never come across it.


Thanks for this link this is really helpful and for her a much better indicator of abilities :)
 

Philbo

Registered User
Feb 28, 2017
853
0
Kent
Thanks to all who have replied so far. It's reassuring to hear that it's not just me that has come across this.

I have always doubted the altzhimers part of my moms diagnosis, erring more towards FTD given it's relatively early onset around 70-72 years of age.

However she doesn't have some of the more extreme behavioural changes associated with FTD, her personality has changed but it's been a bit more subtle.

I understand that people with FTD seem to exhibit memory loss in the later stages, which is what I think we are seeing now.

My only concern is because they believe it is AD they are going to try her on Donepezil, which I understand can cause problems if it is FTD.

Hi

My wife has FTD, diagnosed in Jan 2014. She is only 66 now and exhibited some memory loos even before the diagnosis, though early signs were constantly repeating herself, some mood swings and momentary loss of awareness (for instance, on holiday abroad, thought for a moment that we were back home).

They put her on Donepezil right from the start, explaining that though it was not licenced for FTD, some people found it helped. It certainly seemed to help to some extent with her speech difficulties - (aphasia?). She has not had any problems with taking it.

Phil
 

pinkotron

Registered User
Jun 30, 2017
11
0
Hi

My wife has FTD, diagnosed in Jan 2014. She is only 66 now and exhibited some memory loos even before the diagnosis, though early signs were constantly repeating herself, some mood swings and momentary loss of awareness (for instance, on holiday abroad, thought for a moment that we were back home).

They put her on Donepezil right from the start, explaining that though it was not licenced for FTD, some people found it helped. It certainly seemed to help to some extent with her speech difficulties - (aphasia?). She has not had any problems with taking it.

Phil


Thanks for sharing your experience, it's somewhat reassuring :)
 

lemonjuice

Registered User
Jun 15, 2016
1,534
0
England
I agree with all the posts already written.

I've been saying for many years that 'memory problems' is the least of the problems with dementia and in certain cases, particularly those whose dementia is in any way Vascular, memory problems appear quite late on in the disease.

Certainly in my experience with my family's members, sequencing problems and exacerbation of 'personality traits' were by far better indicators. Difficult to spot in people who have negative aspects to their personality anyway and easy to put down to old age just increasing their natural antagonism/ anger etc.

It actually annoys me that dementia is largely viewed as a 'problem with memory' whereas any of us dealing with it know that is one tiny aspect and more easy to find solutions to than all the myriad of other symptoms.
 

V-DiL

Registered User
Oct 10, 2015
19
0
Agree with all written so far - MMSE is all but useless. Fortunately my MiL's GP knew it was more than this and so referred her to a 'memory clinic' (which fortunately she agreed to).
I kept notes on all the behaviours/issues I was seeing and handed them over to the CPN when she came to do the assessment so that even 'though her cognitive tests showed that 'memory was not the issue', having read all the other issues that were going on she referred her for a CT scan which was able to diagnose Vascular Dementia. Soooo... my top tip is to keep notes on EVERYTHING and somehow pass them to any assessor (assuming you can get them to have the assessments!)

Good luck everyone!
 

Peppie

Registered User
Jul 9, 2017
48
0
Memory clinic diagnosed my dad with dementia with possible Lewy bodies I don't know how they came to this conclusion From talking to us I got this diagnosis in a letter from them I have researched this and dad doesn't display any of the symptoms associated with Lewy bodies I spoke to his social worker and she agrees with me as she says she has dealt with people with Lewy bodies and dad doesn't have any of the characteristics. I do wonder what is the point of these memory clinic they ask a few questions then were on our way after been told thing are the same I think the money could be better used for drop in centres for DM patients to relax talk with people going through the same just my opinion because I get so cross at the little they actually do for us. His last appointment was with a lady who actually said this is not normally her job but there was nobody else available she then said your dad takes Meds for asthma he doesn't it was his blood pressure meds so I corrected her he doesn't have asthma I have no confidence in them.
 

DMac

Registered User
Jul 18, 2015
535
0
Surrey, UK
I am sceptical about the value of MMSE tests too, even when they yield a positive (low) score. My FIL scored very low on a test, yet never received a written diagnosis in his lifetime. His condition was only once formally recognised...and that was on his death certificate. :(