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.
The most recent NICE (National Institute for Clinical Excellence) March 2011 - guidance on treatment for Alzheimer's disease states that:

“Donepezil, galantamine and rivastigmine (acetylcholinesterase inhibitors) are now recommended as options for managing mild as well as moderate Alzheimer’s disease, and memantine is now recommended as an option for managing moderate Alzheimer’s disease for people who cannot take AChE [Acetylcholinesterase] inhibitors, and as an option for managing 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 in itself was a problem for some of the people we interviewed as the process of diagnosis is often so slow that by the time a diagnosis of Alzheimer’s Disease is made, it is too late for the drug to be beneficial.

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.
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.
Until recently when 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 who were aware of the existence of a drug for Alzheimer's were able to persuade their GP to prescribe it.
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.
Since these interviews it has become much easier to get prescriptions for dementia drugs on the NHS, but the initial prescription must still be prescribed by a consultant. Following prescriptions may be written by the GP or the consultant.

NICE recommends that:

•    treatment is started by a doctor who specialises in the care of people with dementia
•    patients who are started on one of the drugs are checked regularly, usually by a specialist team
•    the check-up includes an assessment of the patient's cognition, behaviour and ability to cope with daily life
•    the views of carers on the patient's condition are discussed at the start of drug treatment and at check-ups
•    treatment is continued as long as it is judged to be having a worthwhile effect
•    where a cholinesterase inhibitor is given, the least expensive of the three drugs is prescribed first.

However, if it is not suitable for the patient another cholinesterase inhibitor could be chosen.All the drugs so far available for treatment of Alzheimer's may produce side effects. In many cases these are sufficient to persuade the carer that the medication should be discontinued.
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Most of the patients who had been prescribed one of the new 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.
There were, however, problems which some carers were unhappy about. Frequent visits to a hospital might mean that the carer had to take time off work. Some people found undergoing the tests alarming and upsetting. But perhaps the bitterest complaint was that the frequent attendances for repeated psychological testing were not in fact 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.
One carer felt that to subject her mother to a trial would be to allow her to be used as a guinea pig.

Last reviewed March 2015

Last updated March 2015

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