Measuring deterioriation?

[BeckyJan]

I just wonder how we measure deterioration. The MMSE test is very basic and our local CPNs and consultant admit they only use it as a guide.

My husband has so called mixed dementia but as yet I have not noticed 'steps' down, more a gradual deterioration as in Alz.

How do I measure? I can look back over periods of 6 months, and yes I can see the decline. My diary show more 'events', more confused days, more repetitive questions, less understanding.

I have always said when he could not subtract 7 he was going to be in 'later' stages - BUT
I have done my own MMSE test on him (it is now over 9 mths since our last assessment). He, as always, could not answer the basic things to do with season, date, month etc. He never had a problem with subtraction, spelling WORLD, could never remember the 3 words etc etc. So his score was around 24 but this never accounted for his confusion and disorientation.

The alarm bells now ring. This time he could not subtract easily - got 2 wrong and found it difficult. Total score was 21 (reduction of 3 in 6 mths).
No problems with spelling or with writing sentence which read:

'My Jan is the person I love and adore!!!!!'

(Yesterday he did not know if we were married and who I was).

I know there are no real answers to this question but welcome other views.

Beckyjan

 

[Margarita]

how I do it measure deterioration , is to find out how far back mum memory go into her past in to what memory she can still remember, like I would ask her about my father , but I never say do you remember , just in case she can't and gets up set , like that I know how far her memory roll back to.

but I have stop doing that from this year as (last year she was a 10 in memory test ) it only torment me with worry , as long as she can remember me and grandchildren in her hear now , that all I care

 

[Cliff]

Dear Becky,

Have attended clinic sessions when Dee is tested with scores of 6, 10, etc.

But have found most help from Bruce's thread : About Talking Point members, and the stages listed there.

These seem to relate to Dee's decline over the past two to three years and feel I know where we are.

Hope this is helpful,

With love

 

[BeckyJan]

Hi Cliff - yes I look at the '7 stages' quite often. I think this is where I am confused cos David seems to vary betwen 4 and late 6. Thats why I cannot find the MMSE testing very helpful and cannot work out whether David is deteriorating rapidly now or not.

I know - time will tell - day by day - sometimes I just want to know where I am (its living with all this confusion I think).

Dee's scores are low - I think it wonderful that you are still coping and getting a giggle and cuddle now and then

Beckyjan

 

[Grannie G]

Hi Jan,

Yes we are at a similar stage, but even so there are differences. Dhiren`s last score was 20, but I still wonder about `good` days and `bad` days.

I know I perform better on some days than others, am more alert, have more energy etc.

We questioned the MMSE test at the support group this morning. As it was the first meeting, everything we discussed wasn`t too detailed, and we were promised deeper discussions in the following 7 weeks. What was said though was the scores on the MMSE test are only calculated taking all other factors into consideration.

I feel there is a deterioration in Dhiren, but only last week I was thinking how well he was doing.

 

[Cliff]

Hello Becky

Once again it's the wide variation of symptoms that go with this disease that makes everyone unique - and so precious !

Love

 

[Natashalou]

I find it very hard to see how my mother deteriorates as she has physical problems too. She seems not to be able to write any sense but she cannot see what she is writing, the same with knowing the days , I bought her a calendar to cross the days off and keep track of time, she used to do well with that but now she doesnt, but I think thats coz she cant see to cross the days off as much as forgetting to do so.
Amazingly though she can still knit, not that well admittedly but she has knitted enough scarves for a football team. I guess she just feels what she is doing.
She only to my knowledge had one assesment since being in the home on 14th March, how often are these usually done?

 

[Grannie G]

Hello Natasha,

I used to knit and watch TV at the same time. A long term knitter, hardly needs to look at the work, unless it`s a complex pattern.

Dhiren looks at the paper to see what the date is, as he has problems now with a calendar. The trouble is when it`s yesterday`s paper..............?

He has an assessment and MMSE test every four months. He attends the Mental Health Day Centre and sees the consultant. I imagine this will happen as long as there`s somethiong to test.

These posts even now are showing just how different everyone is.

 

[jude1950]

Hi Becky

I too wonder about signs of deterioration. Jim has gone downhill recently so much so that the CPN had to come out to see him and he is now going to day care one day a week....something he has always fought against in the past.
Jim did have problems counting backwards in sevens but now he cannot count backwards in 2's or 5's.

I did the MMSE test with him , on diagnosis he scored 18 then after 3 months on Reminyl his score went to 22. The last test the CPN did in June of this year was scored at 23 the score That I got the other day was 17. He can hardly write at all now doesn't know dates such as Christmas day or Bonfire night and it is a bit hit and miss when he tries to tell me his date of birth....yet he knows the post code for this addresss I think sometimes the MMSE test can be a bit hit and miss and whist using it as a guide the medics don't rely on the test alone.
That in it self can cause confusion as when Jim is interviewed by the Doctor or CPN he presents so well tells them that he can dress himself,do household chores, cook , shop, do the Garden. and sometimes I think they take this at face value whilst not probing more with the carer.

I think what we all would like to know is " How long is a piece of string." and no-0ne can give us an answer.

regards

Judith

 

[alfjess]

Hi

My MIL scored 7 on her last MMSE, but she struggles with speech.

We think she knows the answer, but struggles with the words and needs lots of time to compute the question and then find the word for the correct answer. A bit like an overloaded computer.

MMSE in my opinion, often doesn't take into account the other difficulties, or strengths of the patient.

It should be used as a tool or a guide, not the be all and end all.

Take care
Alfjess

 

[barraf]

Measuring deterioration

Dear Becky
Does it matter whether we measure deterioration or not?
The carer knows how their partner/parent is and copes with what is thrown at them on any particular day.
No two sufferers are the same and no sufferer is the same every day.
Knowing the amount of deterioration even if you could measure it, would in my opinon serve no useful purpose on a day to day basis, it may help with determining the medication required but thats about all.
Thats my two pennorth anyway.

Cheers Frank

 

[Grannie G]

Dear Judith.

Have you considered writing to the Doctor or CPN a week before Jim is due to see them, putting down the changes you have noticed since they last saw him.

I print out my diary for two or three weeks previously, and post it on, well before the appointment.

Dhiren always presents himself well to the doctor, but at least he has the notes to tell him how things really are.

Love xx

 

[BeckyJan]

Frank - you have hit the nail on the head.

Much of my thoughts about deterioration are to do with what next in medication.
With a more rapid change then maybe I have to look into alternatives to Aricept. It has worked so far but I want to step in early if a change will help. I do feel I will get support, when needed, from local Mental Health team, but they need a 'measure' too.
(they do not rate the MMSE test either).

Its good to get other ideas. Good night all Beckyjan

 

[jude1950]

Hi Sylvia,

I will try that on the next assessment...I have started to keep a diary ...mainly for when Jim has the emotional outbursts and Rages.

Love Judith

 

[Margarita]

He has an assessment and MMSE test every four months. He attends the Mental Health Day Centre and sees the consultant.

is that paid privet by you and Dhiren ?

 

[Grannie G]

is that paid privet by you and Dhiren ?

No, Margarita, it`s NHS.

 

[Nebiroth]

Personally, I don't think it's worth torturing yourself. Constantly being "on watch" is a natural response, but not a useful one. Every time you see another "sign" you'll only upset yourself. I imagine that "testing" mum is probably upsetting for her and may only serve to remind her of her failing abilities.

Really, since dementia is effectively untreatable (the drugs aim to help with symptoms) and it's progression is inevitable (though it varies from person to person)...being on watch and testing serve only to remind us of the mercy-less nature of the disease.

 

[Margarita]

Make me wonder if every Local authority PCT have different policy , when it come to doing memory test more then one time .

When I ask my doctor last year , for another assessment he wrote in referral letter to hospital elderly memory testing , 'he wrote ''this lady may need care home'' that was not my thought just wanted to know if mum had taken a drop.

but thought maybe that what he needs to say to get them out

So when woman came out that done an assessment on mum , she told me that they only meant to get one test done , so I took her word for it .

Got the impression that they only do another one if I was thinking along the line of putting mum in care home .

I am now thinking where my mother scoring was low when she got back to England her scoring was 12 that was in 05 when they did another assessment last year she was 10



when if my mother was say a 20 going down , she would have been monitored more .

I'm going to GIB next week so am going to get them to look up her records , to see what her scoring was when she was first diagnosed .

My mother the type of woman that would never have cooperated with me , if she was diagnosed early in UK get tested regally , if I new she had AZ when my father was alive. she would of prodded alone fine like she was while he was alive.

 

[Margarita]

I imagine that "testing" mum is probably upsetting for her and may only serve to remind her of her failing abilities.

you hit the nail on the head , that how my mother feels .


PS am recognizing the sigh now and no she taken another drop this year , still hard emotional to see it , mum coping she amazes me really . but I have to block it this deterioration I am seeing , because if I ack different she pick it up and I'll cry , so better get on with thing

 

[Margaret W]

Tests

Well, Mum scored pretty well on her three tests late last year and early this year. She could do the numeric as well as the general memory tests, like what day is it, who is the prime minister (bet she doesn't know now, but neither do contestants on the Weakest Link!). We were sent away as her being "borderline". But never mind the tests, she thought my deceased dad was back, was certain about it, he had brought two men and a woman to live in her house, she was cooking him meals, leaving him notes when she went out, couldn't shop, couldn't count out money, was paying bills twice or not at all, ringing people at 3 a.m. and not seeing anything wrong with it, confusing night with day etc. Those things are not in the tests. The last of these tests was conducted in the doctor's surgery at 4 p.m. one Tuesday afternoon. She scored well. When the test was over, she said to the doctor "Well, it is so good of you to see me at 9 p.m. on a Saturday". He got the message that the test didn't cover.

The tests show certain things, but not all. A psychiatrist told me that the greatest sign of dementia is when the person doesn't care what answer they give, but if they are really trying to get the sums right or whatever, that is a positive sign. Well mum did all that, and two days later was reported to the police for being on the streets at 2 a.m. So much for tests.

Go with other signs as well, and don't take "no" for an answer if you think something is wrong and the test doesn't pick it up.

Hope you can cope.

Much love

Margaret