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Carers of people with dementia

Treatment for dementia

While most people are aware that at present there is no medication which can cure dementia, some hope is offered in the form of drugs which in some cases can be expected to slow down the progress of some types of dementia. For more information on the drug treatments donepezil (Aricept), rivastigmine (Exelon), galantamine (Reminyl) and memantine (Ebixa) used for Alzheimer’s Disease see the Alxheimer's Society's website- Drug treatments for Alzheimers.

The NICE (National Institute for Clinical Excellence) guidance on 'Donepezil, galantamine, rivastigmine and memantine for the treatment of Alzheimer's disease' (updated June 2018) states that:

“The three acetylcholinesterase (AChE) inhibitors donepezil, galantamine and rivastigmine as monotherapies are recommended as options for managing mild to moderate Alzheimer's disease. Memantine monotherapy is recommended as an option for managing Alzheimer's disease for people with: moderate Alzheimer's disease who are intolerant of or have a contraindication to AChE inhibitors or severe Alzheimer's disease."

This differs from the previous (2006) NICE guidance, which indicated that donepezil, galantamine and rivastigmine could only be prescribed to people in the moderate stage of Alzheimer's disease. Waiting until the disease was in a moderate stage was a problem for some of the people we interviewed as the process of being diagnosed was often so slow that by the time the diagnosis of Alzheimer’s Disease was made, it was too late for the drug to be beneficial.

 

The carer feels that the chance of his wife benefiting from treatment was reduced due to the...

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Age at interview: 86
Sex: Male
Age at diagnosis: 86
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I talked to these people and most of them said, 'Oh well,' or some of them said perhaps the more knowledgeable ones said 'Ah well they can do something about that nowadays. You know articles in the press and one thing and another mentions a drug.' To whit I said, which is the only one that I've had any note of that might halt the progress of this thing, if it were to be Alzheimer's.

Clinical psychologist I suppose. I don't know what you would call them anyway but they were, specialists and they came round with, in some case a community nurse or one thing and another and sat at this table and gave [my wife] tests. Oh last year I suppose, the normal type of thing that I associated with experimental psychological tests really, you know tests of all the various facilities and faculties and so on and so forth.

And then chatting with them afterwards, the general, consensus seemed to be that certainly [my wife] had got this, these failings but they did not or were not prepared to prescribe anything like this until it was - in their mind - confirmed that she had in fact got Alzheimer's. So reluctantly I had to agree with this. Now it took about nine months and several visits from them when they tested and then said 'Well we'll re-test you after a while to see whether there has been any deterioration of various abilities.' 

And finally sitting here Dr [name of psychiatrist] said to me 'Well, yes the answer is Alzheimer's and we would recommend that we put your wife on 5 milligrams of Aricept a day and then for a while and see how that goes and then we'll test again and if necessary we'll put the dose up to 10 milligrams a day, test again,' and all the rest of it. And that is the situation that we're in at the moment. 

I was, well you cannot be annoyed with doctors and they're the bosses after all, they should know what they're doing. But I, did feel that waiting for something like nine months with the deterioration being perceptibly worse and knowing that had it been prescribed nine months earlier it might well have arrested it at a much more less serious, condition.

Because the drugs are not able to put the clock back, carers of people who were already showing obvious symptoms of the disease admitted that slowing down the progress at this point would not offer any real advantage.
 

Feels that it would not be an advantage for her mother to take a drug which would keep her at a...

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Age at interview: 60
Sex: Female
Age at diagnosis: 80
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There's a drug isn't there which, they say will retard it? That worries me because the, main problem was when my mother was in the sort of middle part, middle stage, when she was getting confused but not confused enough to go into a residential home. So that's when she was a loose cannon. And if one of these drugs just brings somebody back to that situation then I think it's a very bad idea, I wouldn't have been able to cope. Which is perhaps a bit hard, the person concerned might have been happy, but I wouldn't have been.

As I said, this drug did cause me concern in which perhaps they might be able to bring somebody back to an intermediate state. I said that really does, because I feel that's when it's most difficult. When my mother wasn't quite bright enough to be sectioned, but was beginning to have erratic behaviour, and that was very difficult to cope with, and as I said, again there weren't the procedures to cope with it. And I'd feel unhappy if drugs are researched say brought my mother to that situation but, couldn't bring her back to a situation which she could, could cope for herself. Which seems a bit unkind but I think you've got to think of other people as well.

John Bailey explained that he had rejected any suggestion of using medication for his wife which might produce a kind of illusion of normality which would then make things all the worse when the effects as it were wore off or subsided and she realised, as up till now she never had done, that something was very, very wrong with her.
While it was most common for carers to report little, or only temporary improvement on medication, one daughter does describe an improvement in her mother's mood though she admits that this may actually be attributable to her having to come to live with her.
 
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Daughter wonders if her mothers slight improvement on Aricept was due to the drug or to no longer...

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Age at interview: 54
Sex: Female
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She had prescribed Exelon, a medication for Alzheimer's. The GP said that he would arrange for a psychiatric nurse to give my mother her medication. I was not sure how well this will go with my mother but we will see. My mother looked happy for the first time, she asked me if I could stay a few more days, I couldn't. Soon we were getting back to crisis point. The neurologist changed her medication from Exelon to Aricept. 

But she was much better after the three months she'd been with us, she was a lot better, the medication, the Aricept, was actually helping her to recover her abilities and of course the fact that she didn't have any, she had stress in one way but she didn't have any worries in the sense of looking after herself,so that helped as well too.

Before NICE accepted that the drug should be made available on NHS prescription to all those who could benefit from it, the drug could only be obtained either through private prescription or by patients taking part in a trial. Some carers we talked with in 2003/4 were aware of the existence of a drug for Alzheimer's and were able to persuade their GP to prescribe it.
 

Insisted that his wife was given a prescription for Aricept.

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Sex: Male
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For instance the only way I knew about Aracept was talking to a lady in America, a nurse in America who did this, looked after people with Alzheimer's and that, 'Have you tried Aracept?'  But nobody had told me here about Aracept and when I did mention it the main thing that come across was 'It would be very expensive and it would cost you about £70 a month.'  But nobody had told me about it, you know, I mean they knew about it so why didn't they say something about it.

 

Carer is grateful that her partner who was in his 60's was allowed to take Aricept even though it...

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Age at interview: 62
Sex: Female
Age at diagnosis: 61
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That was an NHS prescription, and that was simply through the fact that the psychiatrist we had is a brilliant psychiatrist.  She is so kind and she is so fighting for the patient, rather than going with the system and it was also due to my GP and the practice generally. They had to decide whether or not they would be willing to fund the Aricept and they did, they funded it for, I think he was on it for about ten months. 

But they did tell me that it had been shown not to work in frontal lobe cases and also there is a period in early dementia, early to middle dementia which is the only time when Aricept has been shown to keep things balanced. I mean it doesn't cure, it doesn't make people better, but it does slow the progress down, and keep people on a an even plateau for a lot longer than they would be and I think my partner was really past the place, the case when it would have helped him even if it hadn't been frontal lobe dementia.

So it was worth a try because I would never have forgiven myself if, I'd have thought that maybe it would have helped him. So he's not on that now.

Some carers felt that to withhold a drug, which could be of benefit, was to deny a person's rights and that to have to pay to discover that a drug was ineffective was particularly unfair.
 

Carer felt that the chance that a drug might help was sufficient to justify its use and that it...

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Age at interview: 61
Sex: Female
Age at diagnosis: 70
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I think that if it's the right thing for you then it should be available. And I think maybe we should have got some to start with. Because it was so bad for him I feel quite aggrieved at all the money that we spent out on it. I think if we'd been offered a trial period and it was working then maybe I wouldn't have felt so sore about having to pay. But I feel if it does work like it did worked for (my friends) I think you know you shouldn't be penalised. I mean we could have afforded it but it wasn't easy. I know lots of people who just simply couldn't find that amount of money.

So, I think of it, it's like with the MS drugs, I think if people need it they should have it. I don't think you should be penalised because of, of your illness but I think that is absolutely wrong. People who need treatment whether it's for gout or measles or cancer or whatever, if you need treatment it should be available, you shouldn't have to sort of scrabble through your savings to get it or go without because you haven't got the resources. 

I don't think there's any question about, that. I know they were sort of saying 'Well it was only for a limited time' but when you know somebody's going to die of their illness, limit the, all your time is precious and I don't feel that you should reduce the quality of somebody's life because of the lack of their funds. I'll get off my soapbox now!

Since these interviews it has become much easier to get prescriptions for dementia drugs on the NHS. Healthcare professionals can prescribe these medicines on the advice of a clinician who has experience with Alzheimer's disease. This may be a doctor (such as a psychiatrist or a GP) or other healthcare professionals (such as a nurse with special training). 

All the drugs so far available for treatment of Alzheimer's may produce side effects so if one drug is not suitable for the patient another cholinesterase inhibitor could be used. Side effects did persuade some carers that the medication should be stopped.
 

Exelon made her husband ill and was expensive.

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Age at interview: 61
Sex: Female
Age at diagnosis: 70
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So we had some medication which, I suppose it calmed my husband down a bit. That's something else I forgot to mention. When he was first diagnosed as Alzheimer's he was given Exelon and he gradually built up to the top dose and he was just so ill physically. 

He was completely spaced out, he was vomiting and he was totally zombified. And as soon as we could we came off of it gradually, and it cost us a fortune as well! Spending a lot of money to make you feel ill is not very, helpful.

Since 2011 Exelon has been available on the NHS and people no longer have to pay for it. Back in 2003/4 most of the patients who had been prescribed one of the drugs for the treatment of Alzheimer's disease had taken part in a hospital trial. For some carers this was welcomed with the regular visits to hospital seen as supportive.
 

Carer valued the support she got through her husband's being included in a research programme.

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Age at interview: 52
Sex: Female
Age at diagnosis: 46
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I was very keen to be involved in the research, for my husband to be involved in the research because of finding out what happened to him, of finding out what might have caused it and helping other people. It's, it's a strange thing and I don't think it's, I don't know how typical it is but a lot of people say I went through a dreadful time, it actually makes my life better if I think that other people can profit from my experience and don't have to make the same mistakes and fight the same battles. 

And, and there was very much that feeling. And also it actually offers an awful lot of support which wasn't the reason that I wanted to be involved but was a very unexpected bonus from being involved, that you got a lot of, a lot of support, a lot of information that wasn't available outside the research project. And it's also, if you want to do well you enrol in a research project.

However some carers were unhappy about the frequent visits to a hospital and having to take time off work, undergoing the tests could be alarming and upsetting for some. But perhaps the bitterest complaint was that the frequent attendances for repeated psychological testing were not used as opportunities to discover the actual needs of the patient or their carer and were dropped without further follow up once it was decided that drug treatment was no longer appropriate or the patient was no longer considered to fit into the criteria for the trial.
 

Carer was upset to find that once her husband left the trial he no longer received the attention...

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Age at interview: 62
Sex: Female
Age at diagnosis: 50
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And we didn't have really any of that back-up and to be honest with you I felt used, especially when [my husband] went on to one of the trials of what became one of the Alzheimer's drugs, I think it was Exelon, but I'm not sure. We were on this trial programme, and we did go to the hospital an enormous number of times for umpteen tests and I just felt that we'd become more like 'research fodder' than patient and carer.  

Maybe it's wrong of me to think of that but we were investing a lot of our time and energy in the programme and it would have been very good to have had something by way of support, if it was only sort of you know, can the hospital offer you two hours 'off' as it were, pay for two hours off for me, as a thank you for bringing your patient, because it was a whole morning out every time we visited and we did feel like research fodder.

And then I think the first real dilemma I came across was when my husband began to have a really bad reaction to an increased dose of the trial drug. He was hallucinating and fitting. And it was difficult for me as a lay person to know whether this was part of the illness at this stage or whether it was something to do with the drug. So at the next visit I suggested to the person in charge of the drug trial, would it be possible for my husband to come off this drug for say three months, so that we can see whether this is an unwanted side effect or whether it is still an underlying part of the illness and nothing to do with the drug.

Because on the whole on the drug he was performing the tests better, which is one way of measuring the effectiveness of the drug but if it's producing fearful hallucinations and fits, I think I'd rather that he wasn't on the drug if I had choice. So here was me making the first of many decisions on his behalf because by this time he had gone beyond making decisions for himself and I decided after considering all the options to request that we come completely off the drug. But I was told that, that was not possible.

Sorry, let me say that again, I requested to come off the drug for three months so that my husband could be monitored and then perhaps re-join the trial if it was found that the hallucinations and fits were an underlying part of the illness and not a side effect of the drug, but I was told we were not allowed by the drug company to do that, and if you came off the drug you came off it for good.

So I weighed it up and he came off the drug and within a fortnight the hallucinations and the fits stopped but possibly his abilities as measured by the tests were probably less than they would have been had he stayed on the drug. But I felt that it was a real worry, a terrible worry dealing with hallucinations.

I remember one day I was feeding some shrub cuttings into a shredder in the garden which stood about three foot high, large, red, with a large hole in it and my husband turned on me and slapped me across the face. He said 'I've never done this before but I'm ashamed of you.' And I said 'What have I done?' He said 'You know what you've done.' And eventually later on when he'd calmed down a bit it turned out that he thought I was Devil-worshipping because I was offering oblations into the mouth of what looked to him like a red Devil and it even had two white markings which would look like eyes. And that was the level of his hallucinations; he was just not making sense of his world.

And that was the kind of incident which I wanted to prevent. So that's how he came off the drugs, and I think that was the first time I had to not go in the way in which we were expected to go. The fascinating thing, the hospital
One carer felt that to subject her mother to a trial would be to allow her to be used as a guinea pig.
 
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Carer felt unable to assert herself but suspected the motives of the professionals deciding...

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Age at interview: 59
Sex: Female
Age at diagnosis: 82
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Yes I'd be very, yeah, I think if that was put to me 'We can give your mother something but of course she'll then realise more,' I think I would have been discouraging about it. But I would also have been aware that I couldn't, I didn't have any right to stop it. 

I mean it's got to be a, I think you have to defer to the medical profession in these things but at the same time you have to be aware that the medical profession may not be totally altruistic in their motives and they want to look at the results of these experiments. Are they looking for guinea pigs? I don't know. But I can't, I don't think I like the sound of that one.

Last reviewed February 2020.

Last updated July 2018.

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