is this a proper diagnosis

[pebbles]

hi All

I joined the forum at the weekend as i want to be able to help my nan. She has been ill for the last few years, but was only properly diagnosed with dementia a couple of weeks ago. As we are struggling right now to care for her and her changing behaviour (me and my mum are her main carers) I decided that knowledge is power and finding out more could only make caring for her a little easier if we were able to understand what she is going through. So hence why I am here.

Reading everyone's posts I am beginning to get concerned. We have just been told that nan has dementia - no specific type of dementia. She has had assessments and a brain scan at the hospital which has led to the dementia diagnosis. Is it possible to just have this diagnosis or should I be pushing for a more specific diagnosis? The psychiatrist came back out to see her last week and just said that there is nothing that they can do to help her, and so without a specific diagnosis I wonder if this is really the case?

sorry if my question seems like an obvious one, but as I said earlier, I am new to this and desparate to understand and know that we are doing all that we can.

Thank you for reading x

 

[Nebiroth]

There are different forms of dementia and whilst they are broadly the same sort of thing the underlying causes are different and the progression of the symptoms and type of symptoms can vary significantly. The most common ones are

Alzheimers Disease. This is the most common form. It usually brings about a slow decline in functions. The cause is unknown.

Vascular Dementia. Caused by multiple minor strokes. The decline may proceed in "jumps".

There are forms which are less common. It is also possible to have more than one form, in which case it is called "mixed" dementia.

There are other causes of dementia but these two are the most common.


Making a definitive diagnosis can be difficult, as it relies mostly on symptoms and history, although brain scans can reveal the damage typical of strokes associated with Vascular.

You should be prepared to be firm with the psychiatrist and ask questions. He/she may (wrongly) have concluded that it won;t make any difference for you to be able to attach labels to the disease, but as you say, knowledge is power. It;s surprising that the consultant would say that nothing can be done to help.

 

[Helena]

If its vascular dementia then there is nothing they can or will do in the UK to treat the patient and the behaviour of such patients lurches from a kind of normality to total dementia and everything in between

 

[Brucie]

To be more correct, there are many things that can be done to alleviate some of the effects of vascular dementia, although none, of course, is a cure.

 

[Sunlight]

I haven't been given a definitive diagnosis for my mother either although she has been prescribed Reminyl. The CPN said she would need a brain scan to allow for a diagnosis but these scans are expensive and the NHS wouldn't waste money doing this type of scan for my mother to satisfy my curisosity when there are people who are sick and could be helped by such a scan needing them.

 

[jenniferpa]

Perhaps I'm feeling particularly tetchy today (I had 2 molars removed this morning so I'm not a happy camper) but I do wish you preface remarks such as this Helena, with "in my experience". This is how it was with your mother and you understandably feel bitter, but it's not like that for everyone.

Jennifer

 

[Brucie]

While the CPN may be correct in the interpretation of what may happen, it actually is not anything to do with anyone at that level of the health service. It is a bit like asking a bank clerk for a large loan, when it is the manager who should be the one to be asked.

I'd always go to the consultant. You may still get a refusal, but at least it would be the organ grinder.

 

[sue38]

these scans are expensive and the NHS wouldn't waste money doing this type of scan for my mother to satisfy my curisosity when there are people who are sick and could be helped by such a scan needing them

.

What a dreadful and insensitive comment to make! Maybe I'm a bit tetchy too today (and I don't have a visit to the dentist to blame it on).

Can you imagine a cancer sufferer being told this? Is this another example of dementia sufferers receiving second class treatment?

On the other hand if a brain scan had showed only vascular dementia maybe your mum would not have been prescibed drugs that are only licensed for AD?

I know that when my dad's scan showed mixed dementia at least we knew what we were dealing with and to a certain extent what to expect.

Sometimes not knowing is the hardest thing to cope with.

Sue

 

[Skye]

Unfortunately, I think that diagnosis is difficult with or without a brain scan. I think that the medical people still say that a definite diagnosis is difficult without a post mortem.

I can endorse that, Nada.

Seven years ago John was diagnosed with Alzheimer's, after a scan.

Last year this was changed to 'possibly PPA, though can only tell at autopsy'.

This year confirmed as PPA, without further scan (or autopsy!).

I don't care what they call it, as long as I get the best possible treatment for him.

 

[Brucie]

I agree with what Nada and Hazel say, but I do object to the phrasing that was previously quoted as being used by the CPN

The CPN said she would need a brain scan to allow for a diagnosis but these scans are expensive and the NHS wouldn't waste money doing this type of scan for my mother to satisfy my curisosity when there are people who are sick and could be helped by such a scan needing them.

When you have someone who is as badly compromised as many of our families are, nothing is too expensive and a waste of money.

Things may, of course, be ineffective and thus not worth doing, and in such cases, that might be a more appropriate thing to say.

 

[pebbles]

Thank you all for your replies. I just wanted to make sure whether we should be pushing for more information than we had. I have made contact with my local Alzheimers group and am in the process of arranging a meeting with them where I hope I can get more help.

Thank you all again

 

[sue38]

Hi Hazel,

Sorry for my ignorance but what does PPA stand for?

Sue

 

[Skye]

Hi Hazel,

Sorry for my ignorance but what does PPA stand for?

Sue

Not ignorance, Sue. I hadn't heard of it until John was diagnosed with it. It stands for primary progressive aphasia. Its a form of fronto-temporal dementia, where the initial damage is only to the language centre of the brain. It's comparatively rare, which is why John was initially diagosed as AD.

John can't understand what I say, and has little speech. He can't read or write, or handle money. His kidney function is impaired, so does not slow down the production of urine at night. So little sleep for either of us.

Apart from that he is fit and well.

It does eventually spread to other parts of the brain, but the progression is usually quite slow.

http://www.pdsg.org.uk/Factsheets/PPAphasia.htm

Love,

 

[sue38]

Hazel,

I am lost for words...(no pun intended )

I have just read the link you posted and it descibes my Dad's symptoms to a tee! He had problems with words (talking around the word particularly - his description of mushrooms when he couldn't remember the word will go down in family history!)

He had this problem maybe for 5 years as it mentions in the link, but we put this down to a sub-arachnoid brain haemmorhage he had in 1992. Gradually he began to suffer other deteriorations with his memory and behaviour leading to a diagnosis of mixed dementia (VaD and AD) in December. Physically he is mainly fit and well. At 82 he still walks the dog every day and this morning played 15 holes of golf.

Thank you so much for this. My love to you and John.

Sue xx

 

[Skye]

Hi Sue

I don't think it makes any difference to the treatment. John still takes AD medication

It's just reassuring to know that the progression is slow.

Love,

 

[ellie 123]

Mum's been sectioned

Hi everyone,
I don't come on here v. often. I'm one of those people that find it hard to open up on message boards.

But mum was sectioned today and I don't know what to do with the emotions now. It was nothing like I was led to believe, in fact, it was aggressive and brutal.

I'm ashamed and guilty and she thinks it's because she's done something wrong - that she's being punished. Keep crying over it. `mum has vas. dementia and alzheimers.

I wish I hadn't done it, how can I get over this for mum's sake?

Has anyone had any similar experiences?

Ellie

 

[Brucie]

Hi Ellie

I have not been present when anyone has been sectioned but I remember I was told it was a last resort and not a nice thing, once when I was desperate and suggested we might need to section my wife. Fortunately we got though without never needing to do it.

Jan too has vascular dementia and Alzheimer's.

Sometimes these major upsets just have to be cried out. The section is only there for her safety until something can be sorted for her, probably using medication. Hold on to that - things should get better [a little] from now on.

Remember - you alone can't section someone. There has to be informed medical consultation and it may help to realise that they were the ones doing the sectioning. Don't blame yourself.

Just try and take things day by day and start to plan for what happens when the section is lifted.

I don't come on here v. often. I'm one of those people that find it hard to open up on message boards

that is exactly what TP is all about! It is a place to come when there is nowhere else.

Take care

 

[Grannie G]

Dear Ellie,

I`m sorry you had to face the ordeal of having your mum sectioned. I have never experienced that level of upset, but a friend of mine has, with her dad, and told me how aggressive it was. It was years ago, and she still gets upset about it.

But she knows, and I`m sure you know there was no alternative. I don`t know anything about your mum, but I`d bet anything, the sectioning was for her own safety and benefit.

Try to visit Talking Point more often, I`m sure you`ll find support here. As Bruce said, when there`s nowhere else, TP is always here.

 

[ellie 123]

Mum's been sectioned

Thank you so much Bruce and Sylvia.

There's been lots of tears over the last 24 hours as you can probably imagine. I didn't sleep at all last night because I couldn't close my eyes for fear of this vivid picture waiting on the back of my eyelids - of this little figure alone, frightened. Oh God, mustn't go on like that - you get the picture though.

My rational head knows exactly what you are both saying but my emotional head, well that's another thing. Trouble is that although I'm trying to keep busy, etc. the phone has not stopped since it happened - social workers, consultants, etc. Not to mention the big fight I've had with the insurance company this morning over repairs to the property! So at the moment it's not that easy to remove myself from it. Most phone calls end in tears because it usually involves reliving some of yesterday's events.

On a positive note though I have to commend the local Police, both yesterday and the many months where mum has disappeared, wandered off or simply barricaded herself in they have been absolutely marvellous. Totally understanding and sympathetic, dealt with the situ immediately and last weekend even thanked mum for her time! Even when social services have refused to do anything for mum, they have put themselves forward and assisted me.

And it's little things like that, that keep you going somehow.

Love ellie

 

[Skye]

Dear Ellie

What a terrible time you've had. It must have been a nightmare, having to cope with all the disturbances. It's not surprising that the section was the last straw.

I'm glad you found the police so supportive. It's nice to hear something positive about them, we usually only get the complaints!

I suppose you're going to have a lot of sorting out to do, so it's no use telling you to take some time out. But as soon as you can, try to have a break and be good to yourself for a while. Your mum will be well looked after.

It's going to take some time to get those awful images from behind eyelids, but they will fade, especially if they can get your mum stabilised.

It can only get better, Ellie. Just hang on to that.

Love,