Just some questions

[JMU]

I've read on this site that AD progresses at different speeds for different people. But generally the impression I get is it's usually a slow progress and other dementia types can tend to be faster. This is very vague, but anyway...
I first noticed a drastic change in my father's behaviour two years ago when he did a disappearing act while I was on holiday. Things calmed down after I got home but from there on I had a pretty good idea what was wrong. For about two years we got along well enough, with me providing more support, until I last went on holiday in March. By then I was worried about his ability to care for our cats. I made my family aware and we looked into getting more support for him.
That was six months ago. He coped well enough alone while I was away, but now if I am out of the house for more than an hour or two he forgets that I live with him. He also has no idea who I am. His behaviour has changed dramatically since March. He was diagnosed with 'moderate' Alzheimer's a couple of months ago, with a MMSE score of 15/30. Besides the CPN commenting that it seemed a sharp drop from when he was seen by a nurse in March there was no other mention of what this might mean.
What I am trying to say (and I'm sorry how roundabout this is) is his deterioration seems to have happened incredibly fast over the last six months. Should I expect the disease to progress at this rate? I mean is it a pretty even thing?
Another thing, for some time he keeps getting this thing where his hands bunch up into claws and he has to forcibly pull them out again. I think I read this can happen to late-stage AD sufferers so is this a part of the disease or something else? Has anyone else known this happen? He's been talking about going to see a Doctor about it, which I hope to do, but it has to be done on one of my days off as he has no idea where the surgery is, or how to make an appointment.
I feel like I don't know enough about the disease, although I have read all the stuff on the site. It's relating it to what's going on at home. He's displaying all the symptoms but not in the same order as I expected. I've been given loads of information by the hospital now, but it's not really very useful, and I'm not good at ringing up and discussing my issues with people, although I was told I could (that's why I love this site!). I'm hoping that other people's experiences will help me make sense of what's going on.

 

[BeckyJan]

I will post links here to explain Alzheimers and the Progression of Dementia. The stages are a guideline but sometimes a late stage symptom comes early or not at all. My husband was aggressive in the very early stage, I suspect this was his frustration with himself. In late stage he became relatively mellow but showed other problems with mobility, speech and swallowing.


What is Alzheimer’s Disease
Progression of Dementia

I hope this is of some help but I am sure others will reply to your post too.
Best wishes

 

[sue38]

Hi JMU,

I think the guides to progression are just that, a guide, and symptoms vary from person to person.

Are you wondering if the AD diagnosis is accurate and whether your father might have a different form of dementia? My dad's symptoms were not classic AD, and his diagnosis was eventually changed from mixed dementia (AD and Vascular dementia) to semantic dementia.

 

[Saffie]

Another thing, for some time he keeps getting this thing where his hands bunch up into claws and he has to forcibly pull them out again. I think I read this can happen to late-stage AD sufferers so is this a part of the disease or something else? Has anyone else known this happen?

My husband has Vas Dem and his hands are curled up so much and so tightly that his nails dig into the palms and they have sore-looking indentations on them. It is worse on one hand that the other and he is very obviously in pain when they are gently pulled apart. He seems unable to do this himself even to hold a biscuit or something properly. His remaining knee is also bent and has been for nearly 18 months. I wasn't aware it was to do with the dementia, just thought it was him but maybe it is.

 

[Nebiroth]

Alzheimer's is a very individual disease so it can vary tremendously in the way it affects people and the rate at which is progresses. Some, for example, lose language or math skills early on, whilst in others the abilities are retained until very late. Any sort of "prediction" can only be made by looking at the average.

The average progression for Alzheimer's is usually ten years from the first diagnosis to the final stages. Sadly, some progress a lot faster, whilst for others, it is much slower.

Alzheimer's is not the only disease to cause dementia. The second most common cause is Vascular Dementia. It causes very similar symptoms, but usually, instead of a relatively slow and steady decline it produces sudden declines, which can be severe, followed by periods of stability. It is this feature that tends to distinguish it.

It is also possible to have both of these diseases together.

If Alzheimer's appears in someone relatively young (60 years or below), this is called Early Onset. This form is agressive: the symptoms are more severe, and the progression more rapid. It is however rare.

As these diseases affect the brain, which controls virtually all of the body in one way or another, the clawing hand symptom could be related to the dementia. Myoclonus (muscle twitching) and seizures (uncontrolled and involuntary muscle movements, including spasms) can occur in the later stages of dementia.

Although as I said, Alzheimer's follows a unique pattern with each person, the things you describe seem to be atypical. The rapid progress and early appearance of movement problems might indicate something else at work. In the earlier stages it is often very difficult to distinguish between the different diseases and there are no definitive physical tests for many of them.

I would get a referral to the GP as soon as possible about the problem with the clawed hand, since it is quite possible it is completely unrelated to the Alzheimer's since, of course, having that doesn't preclude other problems. You could also contact your dad's CPN or consultant about the issue.

 

[Contrary Mary]

My husband has Vas Dem and his hands are curled up so much and so tightly that his nails dig into the palms and they have sore-looking indentations on them. It is worse on one hand that the other and he is very obviously in pain when they are gently pulled apart. He seems unable to do this himself even to hold a biscuit or something properly. His remaining knee is also bent and has been for nearly 18 months. I wasn't aware it was to do with the dementia, just thought it was him but maybe it is.

Can't be entirely sure now, but I seem to remember Mum curling up her hands, and she had VaD xx