Is there any benefit to diagnosis.

[Moorcroft]

My mother is going through the process of having her memory loss investigated and diagnosed. I initiated the process, and so far she has seen the doctor and has appointments for a brain scan and a psychiatric evaluation.

I wanted the diagnosis because her social services assessment of her needs is very low at the moment and I want any future assessment to take into account her dementia. She is self-funding, and will be for some time, perhaps the rest of her life, but mum is coming to live near me, and I foresee that I will still need social services help for some things, such as obtaining respite care and other services. In planning her future care, it would also be helpful to have some kind of prognosis.

Mum is quite anxious, and angry, about the suggestion she has dementia, even though she is co-operating.

A friend who is a GP says she sees no benefit in diagnosis since there is little that can be done to help and it just distresses the patient.

Now I'm wondering whether I have done the right thing.

 

[Beate]

He's a GP? With that attitude? That's scandalous. I wouldn't want to be his patient, if he writes off people like that. What if it's one of the dementias for which medication can be given? What if it opens the door to support? Yes you can apply for Attendane Allowance without diagnosis, but it's so much easier with a proper report from a consultant or psychiatrist. Also, without dementia diagnoses being given, the state and NHS will not see the scale of the problem. If she has dementia, she should be able to access services like day centres or care homes that are specialised in that care.
Yes, a diagnosis might be distressing for the person, but she might forget it again, and you will know what you are dealing with.

 

[fizzie]

I am sure there will be many views on this and we can only go on personal experience and given that everything in this country is a postcode lottery you will find a fair old mixture.

My Mother was never diagnosed altho at one point without my knowledge someone gave her an MMSE i think it is called (mini test) - the reason we didn't go the formal route was because she had vascular problems and the loss of memory was typical of vascular dementia. She would have been self funding. We live in a small town community where the doctor knew she had memory loss as did her (mainstream) lunch club. They also knew that we were going to look after at home because she didn't want to go into a home and we didn't want to access any other services. More than anything I did not want to distress my Ma and she would have been distressed by testing and diagnosis. Had I suspected Alzheimer's then it may have had to be a different story because I would really have wanted her to access medication but as it was a diagnosis would have been no use to us and distressing to her.

There are so many different approaches that you can really only look at what your community has to offer, see if it can be accessed without diagnosis (we didn't need a formal diagnosis for Attendance Allowance either and the doctor signed off our council tax forms (you can get a waiver on council tax if they are living alone with a 'severe mental impairment ' - that's a doctors letter) and anything else we needed, and then make a judgement on how it is affecting your Mum.

Good luck, and welcome and keep posting xxx loads of info and friendship on here x

 

[fizzie]

Yes Beate I agree with you too and especially as you are 'on the road' it is probs worth seeing it through. There isn't really a right or wrong, everyones' circumstances are so different

 

[bemused1]

We've gone much the same route as fizzle. No diagnosis for my husband and we are self funding. He has attendance allowance which I applied for as his attorney. Anything else we might have wanted to access we would have to pay for. Drs are aware he has dementia, it was his choice not to go further than an mmse. Here I would say there is little point in diagnosis but that is our choice in our area. His medical problems are looked after and he will remain at home unless there is anything I can't cope with .
It's very much down to where you live but I wouldn't' t say your friend was totally wrong

 

[fizzie]

Yes Bemused, agree with you. I found it wonderful to have an 'old fashioned' GP who didn't push us, listened to our views, gave us support where we needed it and was gentle with my Mum

 

[Moorcroft]

Mum already has attendance allowance. She's had it for at least ten years, and I'm unsure why it was granted in the first place, except that when she was first diagnosed with diabetes, she tended to exaggerate the symptoms. She is, to be blunt, a drama-queen.

After the mini test, mum's doctor said she thinks it is vascular dementia. I think she is probably right, if only because mum reminds me much more of a friend who had vascular dementia than another who had Alzheimer's.

So that does rather limit the reasons for diagnosis.

But what rather complicates things is that she is moving from E.Sussex where she lives now, to be near me in Devon. I'm not sure what services I'll be able to access for her once she is here with or without a diagnosis.

Devon Social Services sent me a booklet entitled 'Dementia Carer's Pathways', which emphasises the need for diagnosis, in order to access services, right in the first paragraph of Section 1. It says 'The importance of early diagnosis cannot be over emphasised.'

It is largely because of reading that, that I put pressure on mum to go to the doctor about it.

 

[nitram]

Assuming blood test have ruled out non dementia related problems I would go for the scan. It may give some indication of the type of dementia(s) involved, additionally it could rule out brain tumours and also provide a datum for any future scans.

 

[fizzie]

I think that probably given the move and the clear 'Dementia pathways' you would be better to follow the path that you have already begun. If your Mum is accepting it perhaps you can just coninue to sell it to her as 'this is just a means to an end' and then perhaps try to stop them telling her results and diagnosis. just write a note to the consultant and hand it to him or ask nurse to give it to him before you go in. At least then she doesn't have to listen to a load of gumpf which she might find scary - particularly if she is a worrier (and drama queens often are - i have a teenage daughter who is a wonderful drama queen!!)

 

[Witzend]

I can see the pros and cons, but all my mother and my FIL ever had (at least 12 and 18 years ago now) was a simple memory test at the GP. My mother was given Aricept, but TBH it didn't help at all, and in fact made some symptoms (notably nastiness) worse.
Maybe she was given it too late - I don't know. At any rate it was a nightmare getting her to take it regularly (she wouldn't allow anyone in the house to make sure she took it) and on the whole we were only glad when she came off it.

OTOH I would have been profoundly glad of some medication for my FIL, if it could have helped, but at the time the GP just shrugged and said there was nothing he could do, and in any case meds might just make him worse.

My mother became extremely reluctant to leave the house at all, and fretful and agitated if she absolutely had to, so I'm glad we did not have a lot of appointments to take her to.

I don't think there is necessarily a right and wrong. Some people seem to think diagnosis is a magic bullet, when in fact the only thing it achieves all too often (it seems) is to slap an official label on what you are already pretty sure of.
Of course, anyone who is dependent on SS for help may need that official label before they will bestir themselves.

 

[susy]

I would go through with it because then you will know. My dad has a mix of Alzheimer's and vascular dementia, I took him back to the GP and suggested that as VD had been diagnosed then as vascular problems generally are systemic (all over the body) then maybe it would be a good plan to keep an eye on his blood pressure. It was high but with the right medication it is stable and reasonable. This will have lead to a slow down of progression in my humble opinion. He was also put on aricept by the memory clinic. He is 13 years post diagnosis, he can feed and clothe himself, recognises us all by name. He is slowly becoming totally incontinent but can still go to the loo. He gets there far quicker now he has got a Zimmer frame too!!

I would say get a diagnosis. It's a pathway to care. It's often easier, especially with the postcode lottery we have. X

 

[lin1]

Speaking personally, I prefer to know because that way I can try to ensure the right treatment, care etc is given.

Their are things that can cause Dementia symptoms that are not Dementia. For many a blood test will prove or disprove these, some need a brain scan to rule them out.

My mum had mixed Dementia, Mum's rapid decline was slowed down when we eventually got her onto Memantine (ebixa) sadly these meds don't work for everyone.

Some years after she died I noticed some very worrying signs in my dad, which putting it mildly amongs other things included mood swings.
It took a while but I eventually got him to the GP, who stopped the mmse after a couple of questions as dad was doing so poorly.
Fortunately a blood test to rule out other things that could cause these symptoms showed dad was very low on folic acid, a few weeks after starting treatment I started to get my dad back n boy was I relieved.

As your Mum is getting distressed , I would tell the professionals to stop using words like dementia, Alzheimer's etc and use terms like memory problems instead.

I hope this helps.

 

[Risa]

To be honest Moorcroft, as the illness progresses, you may find you need medication for your Mum to help if she has mood swings, anxiety or aggression and this is where having a confirmed diagnosis would be useful. My Mum (who has mixed dementia) is taking Memantine to help improve her memory and whilst we don't see much of an improvement, the other meds she takes for keeping her calm are invaluable. We honestly couldn't cope with having her at home otherwise as she would be sundowning/wandering all day long.

 

[RedLou]

I explained to my father that the point of the memory clinic appointment was that if he did have any memory illness it was very very early stages and caught early enough there was a lot that could be done to slow the process. (I felt that if he had Alzheimer's, we could get Aricept or similar; if he had Vasc. D, I could at least look at his diet and lifestyle.) Because of the reason I gave he cooperated.
Don't know if this would help you but wanted to mention it in case.

 

[Rodelinda]

I too struggled with whether seeking a diagnosis would be helpful athough people kept telling me it would be. My mother lives with me and the local health services were great in letting me be with her, take decisions etc even though I don't have POA and she didn't have a diagnosis. And the support following a stay in hospital in the summer was great as it was simply assumed she had dementia. But she was referred to the memory clinic and at the first visit we were told her symptoms were typical of dementia, this was followed by a CT scan which confirmed Vascular dementia; had it been AD the specialist nurse said she would have considered medication.

My mother almost immediately forget the diagnosis and we don't talk about it.

But I find it helpful to know and it gives me more confidence in dealing with people including health professionals: I can simply say that she has dementia at the start knowing it to be true; it also means that I feel more able to ask for support and can succinctly explain the fundamental issue. So I feel it will help in opening doors without question and it sounds as though that might be true for your situation. But I can see that it is a personal decision depending on the circumstances. Certainly I have taken the decision not to talk to my mother about dementia as I know it would make her unhappy. But I am glad we got the diagnosis. Tricky for you - good luck.

 

[Moorcroft]

I explained to my father that the point of the memory clinic appointment was that if he did have any memory illness it was very very early stages and caught early enough there was a lot that could be done to slow the process. (I felt that if he had Alzheimer's, we could get Aricept or similar; if he had Vasc. D, I could at least look at his diet and lifestyle.) Because of the reason I gave he cooperated.
Don't know if this would help you but wanted to mention it in case.

That is exactly what I am doing, and why mum is co-operating. It also helps that when mum had the mini-test her GP said that mum had 'vascular damage' thus avoiding both the A word and the word dementia.