Assessment Results - what do they mean?

[Farside1]

My wife was diagnosed a year ago and we have been floundering a bit ever since to be honest. There seemed to be no NHS-based support, our GP is unhelpful bordering on dismissive, and only the excellent AS have offered anything helpful.
With their support we finally got a referral to the Mental Health Team although even then our GP needed "convincing"
We now have an EEG booked and an informed review and reduction of meds.
In passing we have found that my wife has more extensive damage to areas of the brain than we had previously been informed and that her "score" from the extended memory/cognition tests (the ones after the CT scan) was 62%.
Unfortunately there was no time to take it all in and formulate questions so can I ask if anyone on here knows what a score of 62% actually means in terms of VD current status and progression?

 

[Chuggalug]

I haven't a clue, Farside, as we never got that far. But I know there are people here who can give you a bit more knowledge, and what to do from there.

Best of luck.

 

[Grey Lad]

It would be interesting to know what test they used. Was it the one used by the Memory Service here where they ask you to count back from 110 in 9's, who the Prime Minister is and where you are and what the date is ? They also ask you to copy a diagram.

The 62% means that was the amount of questions that were correct. Unfortunately, from our experience none of this means anything that is particularly helpful. It can be used to compare scores at the next test and could suggest improvement or further deterioration.

The scans again are not definitive they give an indication of damage to the brain - nothing else. I think at best any diagnosis is a best guess. None of the tests have looked at Maureen's functional ability. At best they are a snapshot of someones performance on the day of a culturally biased test. Sorry if none of this is helpful but that is our experience of testing and diagnoses.

 

[nitram]

Quite likely the Addenbrookes ACE-R test

>>>TEST<<<

>>>GUIDE AND SCORING<<<

 

[pamann]

Hello farside welcome to talking point, my hubby goes for these memory tests every 6 months the same questions are asked everytime, last test he got 9 out of 30, so 62% would be just over half, l was told when the score is nil, no more tests, my hubby is due in 2wks time he has deteriorated so much so l don't think he will answer any of the questions. I also do a carers stress test. This has been going on for 3yrs, will let you know what happens next.

 

[malc]

the tests only mean how serious the downturn is for the professionals to know what they are dealing with,mainly because (in my opinion)they don't live with the person who is suffering,i personally don't need a mmse score to tell me how my wife is getting worse and our luck is running out because i spend 24/7 with her,all the test results do is confirm what i already know,re help and support,i'm afraid this complaint is too common from members of talking point,promised the world by overstretched agencies who haven't got a cat in hells chance of delivering the goods.

 

[Grey Lad]

the tests only mean how serious the downturn is for the professionals to know what they are dealing with,mainly because (in my opinion)they don't live with the person who is suffering,i personally don't need a mmse score to tell me how my wife is getting worse and our luck is running out because i spend 24/7 with her,all the test results do is confirm what i already know,re help and support,i'm afraid this complaint is too common from members of talking point,promised the world by overstretched agencies who haven't got a cat in hells chance of delivering the goods.

Malc always gives his honest opinion based on years of experience.. He couldn't be clearer and I agree with him.

 

[malc]

thankyou grey lad,a much appreciated reply,yes i'm on round 2 of malc v alzheimer's,first time was my dad aged 71,god rest his soul,second time is my wife diagnosed at 40,now 44 thinks she's 39.

 

[Farside1]

Thanks folks.
The test was a full diagnostic one with elements of the GP's 3M test plus drawing, writing, counting back, clock face.......
Since the diagnosis of VD there has been no contact and there seems no likelihood they will bother with another test or at least they have given no indication of it. Maybe after the EEG?
My wife's dementia is complicated by a long term physical disability and depression going back 25 years. I believe she may be suffering small brain convulsions (best way I can describe it) post-TIA's which an EEG might clarify. I know her speech, reading and writing are declining and she is increasingly agoraphobic but that and a lack of sleep aside things are okayish and I have no idea how far it is progressed......pretty early stage/moderate is my guess . I think we are pretty fortunate so far but but in a world where there are no maps to guide us we still try to work out where we are and what might be coming further down the road

 

[Kevinl]

It means nothing really, you could score really well on some aspects and badly in other each person is an individual and all are different. If it's the same test as we do then a really high score for mobility would even up a poor score from capability and vice versa, so 2 people with the same score would be vastly different in terms of needs.
" There seemed to be no NHS-based support, our GP is unhelpful bordering on dismissive" If the government wants to throw millions at AZ then give it to the carers and let us get on with the job, paying it to the NHS just isn't working other than as a job creation scheme.
K

 

[Grey Lad]

It means nothing really, you could score really well on some aspects and badly in other each person is an individual and all are different. If it's the same test as we do then a really high score for mobility would even up a poor score from capability and vice versa, so 2 people with the same score would be vastly different in terms of needs.
" There seemed to be no NHS-based support, our GP is unhelpful bordering on dismissive" If the government wants to throw millions at AZ then give it to the carers and let us get on with the job, paying it to the NHS just isn't working other than as a job creation scheme.
K

I awoke with a similar thought this morning. What is the point of the Memory Service? Why don't the NHS accept that dementia is brain injury and treat it thus?

 

[maryw]

Farside 1 .... It looks as if the full assessment was something similar to this, which is what my husband is given regularly as part of a research trial to determine whether keeping blood pressure low slows cognitive decline:

http://www.preserve.sgul.ac.uk/procedure-document-version-2-08jun2012.pdf

 

[WIFE]

Thanks folks.
The test was a full diagnostic one with elements of the GP's 3M test plus drawing, writing, counting back, clock face.......
Since the diagnosis of VD there has been no contact and there seems no likelihood they will bother with another test or at least they have given no indication of it. Maybe after the EEG?
My wife's dementia is complicated by a long term physical disability and depression going back 25 years. I believe she may be suffering small brain convulsions (best way I can describe it) post-TIA's which an EEG might clarify. I know her speech, reading and writing are declining and she is increasingly agoraphobic but that and a lack of sleep aside things are okayish and I have no idea how far it is progressed......pretty early stage/moderate is my guess . I think we are pretty fortunate so far but but in a world where there are no maps to guide us we still try to work out where we are and what might be coming further down the road

At this juncture Farside I always say - forgive me - don't worry about what may be in the future - we none of us know - and with dementia downturn can happen so quickly or the loved one may stay on a plateau for a long time. Just live each day for what it is - try to laugh, love and enjoy things you have done together in the past as far as possible even if some days you feel like screaming and running away from the situation. What will be will be and although you can try your hardest to beat it eventually time will take its toll. Enjoy today. WIFE

 

[Lindy50]

I awoke with a similar thought this morning. What is the point of the Memory Service? Why don't the NHS accept that dementia is brain injury and treat it thus?

I agree Grey Lad.

So far, the only benefit I've had from the Memory Clinic is that I'm able to confirm with social services and with mum's sheltered housing, that she's had a diagnosis, and yes, it's dementia. No help to either mum or me, apart from that.

If that's really what the aim is (identification of people with dementia), they should say so, and not give us misleading impressions of support being available

So.....I agree with Wife and others.....enjoy what we can today

Lindy x