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 fact sheet - 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.

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.
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.
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. 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.
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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.
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.
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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Last reviewed July 2018.

Last updated July 2018.

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