Hello everyone I'm new

[jannstan]

Hi I am Jannstan, I have browsed for a while, but now feel that I need to get more involved. My Mother was diagnosed with Dementia nearly 18 mths ago and I am amazed that some know which type of dementia they have whereas I have been told that it wouldn't make any difference if I knew. I thought for sometime before the diagnoses that there was something wrong but put it down to old age( she is 80) I was not aware of what carers had to go through until this happened to my mother. I take my hat off to you all and hope that in some way I can contribute to the talking point. It's late now and I know that I have questions to ask but I will do it gradually. night night

 

[Brucie]

Hi jannstan,

welcome to TP!

you say

I have been told that it wouldn't make any difference if I knew

who told you that?

While it may be true that in reality there is little we can do to change the course of dementia, it can make a huge difference for us to know which variety our loved one has.

We can, for instance, better understand behavioral things - different types of dementia show themselves in different ways, at different times.

It can help us to come to terms with the situation. For instance, I couldn't figure out why my Jan's dementia didn't seem to fit that of others. I had been told she had Alzheimer's. When I delved further, they said, well, actually she had mixed dementia - Alzheimer's and vascular. Then things made sense.

It is your right to know what the problem is - it is not anyone's right to decide not to let you know.

it wouldn't make any difference if I knew

I'd be saying "let me be the judge of that!"

 

[Margarita]

It can help us to come to terms with the situation. For instance, I couldn't figure out why my Jan's dementia didn't seem to fit that of others. I had been told she had Alzheimer's. When I delved further, they said, well, actually she had mixed dementia - Alzheimer's and vascular. Then things made sense.

Then things made sense

yes that did help me a lot , because I was looking up for AZ symptoms stages & mum had different symptoms then what I was reading up how AZ progresses , but I came to except that she had AZ , but in the back of my mind something was telling me it was not AZ I just thought I was in denial away it .

Then 5 years later mum still had good recall memory, but her behavior was getting very challenging she had another mental assessment & I was told she has VD . I could of got mum another brain scan , but it would of been all to distressing for her & they would be so much brain damage any way .

Only good thing about being told she had AZ was that she got the AZ drugs to hold it all back . Now they not working , but at lest I know what type of dementia she has & it all make more sense to me .

So if I was you I would ask what changes have they notices in the brain scan , what where have they notices brain damage going on in the brain , like they have so they can tell you in they professional opinion what kind of dementia she got

 

[Skye]

Hi Jannstan, welcome to TP.

I think the problem may be that in the early stages of dementia it is difficult to diagnose exactly which form it is. In many cases the consultant will diagnose as Alzheimer's, because that's the commonest form.

It's only later, as different symptoms begin to emerge, that a more specific diagnosis is possible, and even then it's often a case of 'we think'. A definite diagnosis is in many cases only possible after death.

My husband John was initially diagnosed as AD, and it was only after four years that the diagnosis was changed. Actually, I'm quite glad about that, because he was prescribed AD medication, which worked wonders for him. If the initial diagnosis had been correct, he wouldn't have got it!

It might be worth having a word with your mother's consultant again. After eighteen months, there should be some definite symptoms which might indicate a diagnosis. If it is AD, she may be eligible for medication.

Please come back with any questions, members have wide experience of different forms of dementia, and will try to help.

All the best,

 

[Kate P]

Hello janstan and welcome to TP. I hope you will find as much support and help here as I have.

I must agree with the others and say I am very surprised at the attitude of the doctor in terms of knowing what kind of dementia your mother has. The symptoms and treatments for dementia vary greatly dependant on the type of dementia that your mum has and I'm a big believer in having all the facts and information to hand - how can you have that if you don't know what kind of dementia it is?

I would definitely go back to the doctor/consultant and ask that they try to establish the type of dementia - it may be worth you looking at the information sheets here on the AZ site to see if anything stand out for you. I had to battle for over a year to get the true diagnosis for my mum and went through three consultants but for me it was important to know exactly what we were dealing with.

Has your mum had a brain scan?

 

[Lynne]

Hi JanStan

Echo & agree with other comments above re. going back to consultant & asking if he/she may now be able to be more specific as to which condition your mum if affected by. I'm not clear if she is on any sort of medication for her dementia. It may be worth bearing in mind Skye's comment about medication more likely (within NICE limits) to be given to patients with a diagnosis of Alzheimer's Disease though.

It may be helpful to the consultant to have sight of any notes you might have made about Mum during the past 18 months. Or you could make some now if your memory is better than mine! I have made diary notes of any changes to or additional medication, any falls, dizzy spells, days when confusion seemed worse, etc. If you are with your Mum every day, it stands to reason that you are in a better position to observe any changes than a doctor who sees her for 5 minutes only for every six months or so. If you show willing to give your input, you are in a better position (I feel) to expect to be involved & consulted about her care. Does Mum attend a memory clinic?

Best wishes