When is a diagnosis not a diagnosis?

[father ted]

My Mum was diagnosed with AD 5 years ago following emergency surgery and depression. Her post op recovery was slow and her short term memory was very poor. Prior to all of this her CPN had spoken to me about Mum's forgetfulness and the fact that she had very little food in the house. Mum had never been fond of cooking or cleaning more a sort of dancing and make up kinda gal so I thought nothing of it.
Her memory got so bad and her mood so low that she came to live with me and has done really well. She is on anti depressants and Aricept 10mg.

Her Consultant at memory clinic now doubts the diagnosis as her MMSE scores in 5 years have ranged tween 20/30-28/30. Last score being 23/30 recently. He said decline would have showed itself by now and he is confused.
Mum remembers the questions she will be asked and rehearses them on the drive there. - What town are we in? What's the date? What floor are we on? What season is it?
However when he explained to her he doubted the AD diagnosis I could see she didn't understand and so I asked her, in front of the Dr 'what did he say' she replied I don't know but got it after it was explained 5 times.

Has anyone experienced this? He suggested further tests but Mum doesn't want these. Perhaps wrongly but I feel angry that the difficult times we have had with her and still do from time to time may not be AD but depression or bloody mindedness which has seen me in tears of frustration and despair. He said her problems may just be from old age but does your mind deteriorate just because its old? Surely deterioration is down to some organic cause where the brain is compromised by disease or deterioration of structure?

Would really like to know how many people have had the medics doubt original diagnosis.

 

[Izzy]

My husband was first diagnosed with Alzheiner's in October 2001. He was immediately prescribed Aricept. He took this for a long time and his scores on the MMSE were always in the mid to high 20s. There came a point, however, after a good number of years (I can't recall how many now) that his score started to decline. At the first appointment where there was a drop in the score the doctor said that had his scores remained as high as they had been she was going to question the diagnosis. He then remained at the mid to high teens for a long time until eventually that declined and he is no longer on medication and I would imagine he would score nil on the test.

Sorry. Not much help but just our experience.

 

[canary]

Mum has AD. When we went to the memory clinic and were given the diagnosis I was surprised as I was expecting Vas D (high blood pressure, atrial fibrillation, history of TIAs) and the consultant said that was what he had been expecting too, but the scan she had showed definitively that it was AD.

I had assumed that AD showed up on scans

 

[Saffie]

I had assumed that AD showed up on scans

Not on most scans. Diagnosis is often based on there being no other cause found for the dementia.

 

[MERENAME]

My Mum has a large benign brain tumour and alzheimers, diagnosed by scan, tangles in the brain. Her mmse was 28 10 years ago it is now 24. In real life she has gotten a lot worse over the past 10 years but her mmse has hardly changed.

 

[canary]

I found this article, which I thought might be of interest. Mum had an MRI scan

http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=311&pageNumber=4

 

[sinkhole]

My aunt was admitted to hospital for a fall last November and this was the first time she was assessed. Her MMSE was 23/30 then and when she went to the memory clinic in January this year, they carried out another MMSE and we haven't yet had the score from that one.

My view after that was that the actual MMSE should only contribute towards the diagnosis because it's a very broad measurement of several cognitive functions and abilities. I believe it was originally designed as a screening test but it seems that it's now used as a way to measure how AD is progressing and I'm not convinced it's accurate enough for that. Your experiences seem to suggest this too.

There are other memory tests such as the MoCA, but I don't think they are used in the UK, which is a shame as they could be useful. CT/MRI scans and blood tests seem to be the other diagnostic tools used to determine how far AD is progressing, but these on the GP getting involved and if the person with AD doesn't want to cooperate (my aunt refuses both) then it's difficult to get a proper ongoing diagnosis.

What I'm suggesting is that the MMSE is not sufficient on its own to diagnose a specific condition and may not give an accurate picture of how a condition is progressing.

 

[Soobee]

My mum had a couple of MMSEs over a two year period where she scored 29 or 30 but was clearly displaying dementia-related behaviour. She was in the long process of being found unfit for work (due to memory problems) when she had a large TIA - she treated it as a major stroke and went downhill from there.

Is the consultant suggesting it's not dementia or is he saying it's not typical of Alzheimer's type dementia?

 

[father ted]

Thank you for your replies, it seems many of you have experienced this. I guess ultimately I know how my Mum has changed and I don't really need confirmation nor does my Mum want further testing. Things could be worse so we will go with the flow.

 

[maryw]

MoCa is used in the UK. My husband has been given this many times following his stroke (s). He is also given a wide range of memory and cognitive tests as part of a research project. These involve trail making - joining A1 to B2 etc amongst many others. So the more extensive tests are there but not always routinely given.