Dementia and Alzheimers

[rickee]

Would anyone know of a recent UK messageboard site I could join?.I've googled,but,most seem to have very low uptake,and dont have recent input.I've joined an American site that is very good,but,I feel I'd benefit from local info and experiences. It's in relation to caring for a parent with fairly advanced dementia. TIA

[jules77]

I dont know of a forum/messageboard, but cant say I have looked, I have done my own research on line. My mother is in the fairly advanced stages of Alzheimers.

From our experience, research, speaking to other people in same position, I would say to check what medication your parent is taking, as we have found that since stopping all medication the progression of the disease has slowed down dramatically. We have been through the aggressive stage, shouting, walking about non stop, scratching parts of the body and rubbing the hair until she has bald spots. She is now totally self reliant on care, incontinent, cannot feed herself etc, but has been in the same 'state' for a few years now without getting any worse.

Having had the disease for nearly 15 years now, and having been on a lot of drug trials (together with chinese herbal medicine) we found that a lot of the medication given to people with dementia and alzheimers is for schizophrenics and actually causes a lot of the side effects as mentioned above, and since we stopped giving her them she is much easier to care for.

Hope this helps.

[jules77]

I found this one which may help, there are recent posts but havnt checked how active it is

http://www.alzheimers.org.uk/talkingpoint/disc uss/index.php

[evedawn]

Oh rickee that is so sad. There is a contact number / address i have at work...(one or two folk some into contact with through work suffer from alzheimers / dementia) i will get it monday and pass along then.

It's not only older people though...one recently diagnosed lady is....43 :-( how very,very sad!

[rickee]

Thanks for your help Jules and Eve. It's much appreciated.Sometimes you just want to talk to other people who are affected too.

[Ice.Maiden]

We had a family member who suffered from this terrible disease, and whilst it's a painless process for sufferers, it's awful for loved ones to stand by and watch the decline.
Ours started with the grandparent "seeing things", and then believing that people were there when they weren't. Rather than correct this, we just used to agree, in a pleasant way, and say: "Oh yes - well that's nice then, isn't it?" - because in lucid moments, the sufferer knows that something's wrong, and they can feel very frightened by what's happening. We found that making them feel comfortable, and thus alleviating much of their fear, really helped.

[rickee]

I know what you mean ice maiden,the halluncinations thing and it being worse on the family. Unfortunately,she's now past any real type of reality at all.Just a bit of normality left.Its the worst disease ever,cos,there is no cure and no quality of life for maybe a very long time.