dementia or not ?

[sheila d]

Mum has just been discharged after 6 weeks in hospital and I still don't know why?

Three weeks ago we were told she had scored 20 on the mmse carried out before Christmas and would be started on Aricept. But before the treatment was started a second mmse test was done by a locum psychiatrist and she scored 21. However my father, who was present at the time complained that the psychiatrist spoke very poor english and was impossible to understand, so the ward doctor repeated the test and mum then scored 29.

When I spoke to the doctor the next day, he said mum had done very well and that she did not now have dementia. So I asked him if that was the case then how come she has no short term memory and has obsessive behaviour patterns. He replied that she may instead have some atrophy of the brain. So has she demetia or not ?

She has been discharged, we have no diagnosis and no follow up, apart from a visit due by a psychologist to advise dad on coping strategies.

As far as I can see the last 6 weeks in hospital were pointless and as nothing has changed I face the depressing thought tht mum will be back in again within a short space of time, once the anxiety of a life outside the unstimulating hospital envirenment catches up with her.

 

[jenniferpa]

Sheila - I'm wondering if what they meant to say is that she doesn't have Alzheimer's Disease. I assume since they were planning to prescribe aricept that that was the initial diagnosis. I have no idea why "atrophy" would not be considered dementia, except from this practical sense: I found that there was no ongoing help (e.g. memory clinics etc) if the diagnosis was NOT AD. So possibly telling you that it's not dementia is short-hand for don't expect anything from us.

I find it hard to believe that someone with no short term memory could score 29 on the mmse - is it possible that there was some "fudging" going on there. It shouldn't happen, but I wouldn't like to swear it didn't.

Not much help I know - I'm not surprised you're worried, because it sounds as if at the very least she needs to be under the care of a decent psychiatrist, and that's not happening.

 

[Margarita]

I look up what Cerebral atrophy is found this

http://wrongdiagnosis.com/c/cerebral_atrophy/intro.htm

Cerebral atrophy is a condition characterized by a decrease in the size or a wasting away of brain cells and tissues. It may result from malnutrition, abnormal cell or hormonal changes, or stroke

Has your mother had a stroke ?

If not I wonder how he would no that without a brain scan wondering did they do one, or other test , while your mother was in hospital for 6 weeks

PS

read this

http://wrongdiagnosis.com/c/cerebral_atrophy/intro.htm

 

[lesmisralbles]

What is MMSE ?

Hi all
What is MMSE scale
My hubby has seen a mental health Doctor
What are they doing , is this the MMSE scale you are all refering to ? Please tell me, better equipted, when I go back next time
Thanks Barb

 

[Skye]

Hi Barb

Mmse is a test that is used to tell if there is any decrease in brain function. It's normally done before diagnosis, and repeated at intervals to monitor the progress of the disease.

It's also used to determine whether medication can be prescribed. The scoring is out of 30, and if the score is between 10 an 20, medication can be prescribed.

You can read more in this factsheet:

http://www.alzheimers.org.uk/factsheet/436

Love,

 

[Grannie G]

She has been discharged, we have no diagnosis and no follow up,

I would contact the GP and ask what happens now.

 

[Helena]

This all sounds to me very much like my Mother a couple of years before she died .........one minute sharp as a tack and could probably score a 30 on an MMSE and the next only half of that

I would hazard a guess thats she is having mini strokes and cerebral atrophy may also be a part of it

I do not know why the doctors dont follow through on patients like your Mother or mine .....they seem to fudge the issue and step away ......

 

[Jodie Lucas]

Hi,

Just adding to the others. If she has brain atrophy, then it is quite possible that she has vascular dementia. My grandmother was diagnosed from a scan, and it was diagnosed although my gran has never had a stroke. So this can happen even if the person has had no history of strokes.

Also although the mmse is a useful assessment tool, the results do not always reflect on how the person is. For example, someone could do quite well on the mmse, but is unable to cope with everyday tasks or has behavioural problems etc. Its also said that the mmse can be quite biased on a cultural basis and for people with hearing or reading problems, so its important that the doctor has a good overall picture of the situation.

Jodie

 

[sheila d]

thank you

thank you for all your replies, I found them really useful. Mum did have a brain scan initially and we were told that it was normal then, so to come up with atrophy now did seem surprising.

I will just have to keep a close eye on her and at any sign of deterioration I will be hollering and screaming at her GP and social worker

 

[KenC]

Hi sheila d

There are various types of Dementia, and in at least one type the MMSE does not work and this is a well know fact. I have Dementia with Lewy Bodies, and in this I get a high score all of the time, but that is because in this type of Dementia, the short time Memory stays (fairly) intact.
I have been told by many Doctors and Professionals in this field that this is a well know fact, but the people in NICE etc refuse to take it on board.
I think it all depends on the type of Dementia, and whether the first diagnosis was correct.
If you are not happy you can always ask for a second opinion.

Best Wishes

Ken

 

[BeverleyY]

I am new here, and find a lot of this confusing.

My dad was assessed last year by the mental health team but I have no idea what his score was - I believe it was very low though.

I was rather cheesed off at the time because one of the assessors had a strong accent (that I could barely understand) PLUS my dad is (a) a bit deaf (b) Polish, and never been great at reading/writing in English anyway! Surely, his lack of English mother tongue would have diminished his score anyway. I have just looked at that MMSE test myself (my dad is about to be reassessed) and I am positive he will score less than 10 BUT... my dad is still extremely lucid for the majority of the time.

His short term memory is very poor, but he does manage to learn and retain some new things - it seems to depend on just how important to him they are (my mum died 2 weeks ago and he has had no trouble learning where the cemetery is and walking there to exactly her grave). He also has no problem going to the local shops (even remembering to get the milk he has gone for).

I am so confused myself as to how bad he really is/isn't. He seems perfectly capable of most daily tasks and carrying out instructions (he happily sanded the doors down last week and made flipping great job of it) he then quite happily criticised my husbands poor painting skills. He then goes off on complete tangents from wildly confused to the odd delusion. These confusions are definately worse when he wakes up after nodding off in the daytime.

I am sure the mental health team will have him scored as lows as anything, but to me (and most people that meet him and come into contact with him) he appears just forgetful. There is certainly nothing wrong with his abilty to calculate money in a shop (or work out how much each of his grandchildren will inherit from him).

He makes tea & sandwiches/toast and happily contributes to helping in the kitchen. He cuts the grass, cleans the kitchen - not because asked to, but just because he genuinely contributes to the household tasks he sees need doing.

I am really scared they will score him worse than he deserves to be because of his language and hearing problems and as a result of that deem him not worth of medication (I am pretty sure that is what they must have decided last time he was seen). They came, asked questions.. told him he needed an MRI scan which he refused as he didn't think there was anything wrong with him.. and that was that, we never heard from them again.

How can I make them realise that he is surely worthy of treatment - and that these questions do not reflect his capabilities??? My dad was in a labour camp during the war and never had the luxury of going to school. Surely they have to see that that all impacts his score?

Beverley

 

[Skye]

Hi again, Beverley.

You're quite right, your dad should have special consideration because of his language problems. When the Society challenged the NICE guidelines for the prescription of dementia medication, thet were successful in showing that the mmse test is not accurate for people with language difficulties.

The guidelines also clearly state that the carer's views must be teken into consideration.

You should write to your dad's consultant and explain the situation, and ask for an appointment to discuss this.

My husband has PPA, which means that he lost all language skills very early, though he continued to perform well in normel life. The mmmse was discontinued early on as inappropriate, and the consultany went by how John himself presented, and what I could tell him.

The problem may be that the drugs are only recommended for Alzheimer's, and not for VD, so without a scan you may have difficulty.

Good luck,

 

[BeverleyY]

Hi again, Beverley.

You're quite right, your dad should have special consideration because of his language problems. When the Society challenged the NICE guidelines for the prescription of dementia medication, thet were successful in showing that the mmse test is not accurate for people with language difficulties.

The guidelines also clearly state that the carer's views must be teken into consideration.

You should write to your dad's consultant and explain the situation, and ask for an appointment to discuss this.

My husband has PPA, which means that he lost all language skills very early, though he continued to perform well in normel life. The mmmse was discontinued early on as inappropriate, and the consultany went by how John himself presented, and what I could tell him.

The problem may be that the drugs are only recommended for Alzheimer's, and not for VD, so without a scan you may have difficulty.

Good luck,

Thanks Hazel

I am trying to get an appointment with the nurse that came out before - he never even got to see the consultant the last time!

This is all a mine field. I have some people saying don't let him be formally assessed as this will cause problems in which care homes will take him (when/if it comes to that point).

Beverley

 

[sue38]

This is all a mine field. I have some people saying don't let him be formally assessed as this will cause problems in which care homes will take him (when/if it comes to that point).

Beverley

I couldn't agree more. I am starting to look at care homes and if my Dad has to go in to a care home the one I would like him to go into (set in lovely grounds, close to home, personally know the manager, spoken with residents who are happy there, excellent CCSI report...etc) is not licensed for dementia patients. I mentioned to this my sister who was surprised as the mother of a friend of hers is in this home and has dementia, but I am wondering if this is because she hasn't been formally diagnosed.

On the other hand without the assessment you can't access other services such as Social Workers, CPN's, OT's or, it seems, day care - at least not in our area.

My Dad too has problems with language as a result of his type of dementia. At his last MMSE test he scored 8 which would normally mean that he was too advanced for the drugs (ebixa or memantine in his case), the usual cut off point being 10. The consultant however recognised that this was a 'false' reading and had no problem with keeping him on the drug.

 

[Grannie G]

From my experience, those who are self funding have more choice than those who are funded by SS.

Many CH will take those whith dementia, as long as they can show their behaviour is manageable. My mother was refused a place which would have been ideal, because she wandered. This was not just because there was no combination lock on the front door, but also because the home wouldn`t have accepted her going into other residents` bedrooms.

If SS are funding a place, I think you will find it has to be registered for dementia.

 

[jenniferpa]

There's another point to consider though - if someone has dementia would it not be better for them to be cared for somewhere which is geared to their needs? I can understand where you're coming from - my mother never had a "formal" diagnosis other than Strokes, and in a way it made a hunt for care a little easier, but in the end it was her lack of mobility that made the difference: the nursing home she ended up in would have found a mobile dementia sufferer impossible to handle, but an immobile one presents fewer issues in a way. Don't forget - dementia is by its nature progressive. While one type of home may be fine now, somewhere down the line a different kind of care may be required. If you accept that at that time you may have to move the person fair enough, but I don't think a lot of us want to do that. It is true though that if someone is resident in a home and THEN is diagnosed with dementia, it is possible for the home to get a dispensation or whatever it's called to allow that person to stay there. The home has to be willing though.

 

[jimsandy]

It is tough dealing with this issue with our parents

Sure wish we would have known what to do long ago when this happened to my mother. She has been having issues like short term memory and was taken from her house, as she had issues with not paying her bills, not keeping up her house, eating properly and this took some time as well. I am glad we were able to get her some place safe and hope this happens for you as well. My mom also spent over 6 weeks in a hospital and then we were told she could no longer stay at the hospital and was told she had to go to a nursing home. We checked out several and found one that we felt comfortable with, and the courts had to intervene to help get her where she needed to be. The one good thing we did early on while she was in the hospital was get a Power of Attorney. But sounds like you have another parent that can help with some of the issues so you might not have to get a power of attorney. Took some time to get the guardianship to help with other issues. Hope things work out good for you soon or already have. Keep in touch on how things are going. I am a new member and have been for less than a week or so. Sandy

 

[BeverleyY]

I found our Dad's score last year was 11 - they offered medication, he said no as he takes too many pills and 'isn't ill anyway'. They then said it was a 'large vascular element' to his dementia as he had had a mild stroke. Well, it's my understanding that they don't offer medication unless it is Alzheimers anyway, so.. is the consultant confused?? Surely, they just should have given my Mum the pills to give him.. I mean, he surely with a score of 11 couldn't have made that choice himself really. At the end of the report, the Consultant says anyway, my Dad has Glaucoma which is contraindicated anyway with AD drugs.

As for residential homes, my Dad's Care Manager told me herself, she has people with advanced stages of AD in residential homes, and gets round this by not having them formally diagnosed.

I spoke to the manager of the Residential Home 200 yards from us, and it was her that told me not to get him 'labelled'. She said 90% of her clients have some form of dementia that she is not licenced for.

Beverley