Could someone talk to me about Alzheimer's, please?

[Lovecat]

My dad was diagnosed about 18 months ago, but had been losing his short-term memory for about a year before that.

My mum is his sole carer (we live 250 miles away) although my brother lives with them he has mild cp and his own issues with depression so is not much help to her.

Anyway, she rang me up tonight to let me know that he's refusing to eat - the last time he had solid food was 4 days ago. He's like a skeleton anyway, he was never a big eater, so this is not something he can afford to be doing. She's giving him complan-type drinks that he's been prescribed but he's only having 1/3rd of what he's meant to be having.

The Dr says he's got cognitive mental function (? that's the phrase my mum used?) and so they can't section him, which apparently is the only way they can get him to eat and even if they were to section him, they couldn't force him to take food - it appears all they can do is wait until he's at death's door and then take him into hospital and put him on a drip...

Is this right? It seems they're pretty much prepared to let him waste away because he "appears" to be functioning mentally (this said to my mum after he greeted the Dr at the door clad only in the underpants he's refused to change since February as 'they're not dirty, they were clean on this morning'...).

My poor mum's in a bit of a state, I'm not expecting masses of advice because I'm not sure there's anything I can do, but I feel the need to 'talk' to someone about it...

Has he seen a psychiatrist who specialises in the elderly?

He is clearly self neglecting and a risk to himself.

Patients with Alzheimers do get sectioned.

Get your mum to repeat the risks to the GP and insist on a psycistric opinion.

Good luck

contact Age Concern (got a new name - Age UK?) it has a section on dementia and is very helpful in navigating the system.

Thanks guys, I'll have a look at that site and suggest both of those to mum - she's in a local support group but I think that's more for her as a carer than for any practical help with his condition.

If the doctor who says he has CMF is the GP she must insist on a referral - this is way over the head of a GP no matter how good a GP.

Gosh this must be so tough for her and you too, worrying from a distance.

Lovecat - not able to offer much advice on the condition but can offer some support to you - my mom had a degenerative disease - called Picks disease - evil, evil evil. My dad was the sole carer and I too live about 180 miles away. Picks is linked to Alzheimers but there are marked differences. If you want to chat generally then I'm happy to share my experience with you.

Would you be able to speak to your dads GP yourself? If your Dad is able to would he give permission for this? Or would he not be able to know what that meant?

I would suggest talking it through with a few Alzheimers support people first and his immediate medical support team to get a feel for the possible motivation behind his behaviour and options for addressing it.

In many ways my father is in great shape for someone with Alzheimers but there is one problematic issue over his anger that could lead to him getting sectioned prematurely. The thing is sectioning would lead to many other problems that don't currently exist and almost certainly shorten his life, so we are trying to do things that might in some way address the problem for the timebeing.

What I am trying to say is, with your dad, getting him sectioned may not get him eating and may make things worse. So go carefully before you act. However, obviously there are times when sectioning is necessary.

It's really hard for the 'wife'. They are often emotionally pressured by partners to keep quiet about certain things, are torn between sticking by their lifelong partner and recommending treatment that their partner doesn't want. They have to cope with the daily forgetting and frustration and usually depression that comes with it. They know they will outlive their partner and it will get steadily worse in front of their eyes. Not easy being the partner of an Alzheimers victim.

My mum died with Alzheimers. Talk to the Alzheimer's Society for up to date advice.

www.alzheimers.org.uk

It's a crap illness. Mum stopped eating too, she forgot how to swallow. The GP said she could be taken in and fed on a drip but thought there wasn't much point since there would be no improvement overall. There was never a mention of sectioning from the GP or the geriatric psychiatrist. I wouldn't have chosen sectioning anyway - I have two friends who have been sectioned and it's pretty miserable and extreme. She was violent and aggressive but had a fantastic carer who knew how to calm her down. There are lots of new approaches to dealing with this distressing side of the disease. The man trapped in the symptoms might have flashes of awareness and there is a whole school of thought about a more understanding way of dealing with the individual, not just the illness. The Society might have more news.

I agreed with the GP. Mum was at the end of things, her body was giving up and she died in her sleep. I am not advising this - all circumstances are different - but there is no easy answer. It is a rotten disease. I try to raise as much money and awareness as I can in the hope that for our children things might be different.

Good luck and I do feel for you and your family. I felt I got my mum back at her funeral when we celebrated all the lovely things she meant to us when she was well. Take care of yourselves.

I would ask the GP for another assessment.

There can be lots of reasons why someone with dementia isn't eating, from simple treatable ones like dental problems or constipation or other physical health problems (the person may be unable to articulate that they are in pain) to more complex ones like depression or developing beliefs about food being poisoned. It may be necessary to carry out some investigations like blood tests but he also needs a thorough assessment of his mental state to try to find out more about the reasons for him not eating. Until the cause is established (as venetianred says) then it's difficult to know how to help your Dad. Sectioning him into hospital would be a very last resort and may not be at all appropriate.

Is there a Community Mental Health Team involved (ie; Comunity Psychiatric nurse or psychiatrist or social worker etc)?

The term 'cognitive mental function' doesn't really mean anything. I suspect that what is meant by the GP is that your Dad has 'capacity' to decide whether to eat or not, which relates to a piece of legislation called the Mental Capacity Act (in England) which can allow decisions to be made on people's behalves under some circumstances if they are unable to make decisions themselves because of a mental disorder. This is different from being sectioned which comes under the Mental Health Act. The 2 pieces of legislation are complicated and not always well understood!

I would second the suggestion to get in touch with the Alzheimer's society or Age Concern who should be able to give more detailed advice. I would also suggest to your Mum that she gets back in touch with the GP or the Community Mental Health Team if they are involved (assuming your Dad won't do this himself and doesn't see the not eating as a problem).
There is also nothing to stop you from getting in touch with the GP yourself if you are sufficiently worried to go against what your Dad might be saying. The GP won't necessarily be able to give you any information back for reasons of patient confidentiality but they have a duty to listen to your concerns.

Hope this is helpful (I'm an Old Age Psychiatrist by the way). Dementia is a horrible illness, often just as much for the family as the person themselves, but there are things wich can make a difference to someone's quality of life and professonals have a duty to do their very best for that person, whatever that may entail.

apricot72 and sallyjaygorce - it really got something from reading your posts. I just spent 5 weeks with my parents, trying to sort out many of my dad's problems/issues and finally starting to understand more about Alzheimers. The biggest problem with Dad is his aggression. He is starting to hit and push, we hope it just stays in the family. But he gets so incredibly angry and fierce, usually when he has the wrong end of the stick. He hates that his finances are out of his control and he obsesses about it day in and day out and yells at us. Also that he doesn't have a drivers licence.

The wierd thing is that some times he can be so fabulous that you might not even think there was anything wrong with him. But more often than not happiness eludes him. He really is utterly determined to be as difficult as possible.

Also, he has stopped washing his clothes, and refuses to let them be taken away. We are sorting this out, but it's the mental state that is hard to bear.