Hi Moxie, (please forgive the long response!)My dad is 88. he has been diagnosed with mild Alzheimers earlier this year. he has been given 2 types of medication to try - sorry can't remember the names - and couldn't tolerate either - they gave him nightmares and hallucinations - he was even found outside his property in the early hours of the morning with no knowledge of how he got there. he has refused to take anything for a few months now. He seems about the same - he can look after himself, go out for walks etc. Should I be concerned that he is refusing to take any medication when it seemed to make things worse?
Hallucinations are quite a common side effect of anti-dementia drugs such as donepezil (Aricept), rivastigmine and galantamine. Between 1-10% of people taking these kinds of drugs have a similar experience. It’s very important that you tell the Memory Service about these side effects – both so they can offer him a potentially suitable alternative drug and so they can register the ‘adverse event’ with the national drug surveillance system, administered by the MHRA. This system helps guide clinical decision-making to ensure that patients receive the most effective and safe medicines.
Typically, most patients with newly-diagnosed AD start on 5 micrograms of donepezil each night and then increase to 10 micrograms if they can tolerate it. If they start to develop unpleasant side effects, they can be switched to one of the other two drugs (rivastigmine or galantamine). Although they all work by boosting levels of the same neurotransmitter in the brain (called ‘acetylcholine’), they each do so via different biological mechanisms. As a result, some people find they experience fewer side effects when they try an alternative drug. Unfortunately, it sounds like this tactic didn’t work for your father with the drugs he’s tried thus far.
So, this leads to two questions: (1) What are the implications for your father of not taking these drugs, and (2) Are there any alternative drugs that might boost his cognitive function without causing similar side effects?
(1) Implications of not taking any anti-dementia drugs
The implications of ‘non-compliance’ (as the doctors like to call it!) are that your father may potentially be missing out on a small but significant boost to his cognitive function – potentially a little more clarity of thought and slightly better functioning. However, it’s important to realise that not everyone gets the same level of cognitive ‘boost’ – in fact, some people find they get very little at all. And some find what little benefit they do get is outweighed by the unpleasant side effects. It’s not clear from your post whether your father had been getting any cognitive benefit from taking these drugs, but he certainly seems to have experienced quite serious side effects. And this may tip the balance in terms of overall quality of life towards being better off not taking them.
One very important thing to understand is that these anti-dementia drugs do not slow down the underlying disease in the brain – they only squeeze a little more function out of what is left by boosting levels of acetylcholine. There is no evidence to suggest that, by not taking anti-dementia drugs, your father is in any way hastening the process of neurodegeneration or shortening his life.
(2) Alternative drug strategies
It’s not clear from your post whether your father was ‘up-titrated’ to a higher dose (e.g. 10 micrograms per day of donepezil) or just tried the starting dose. Up-titration is when you increase the daily dose of the drug until you start to feel the maximum benefits without too many side effects. It may be that he just needs to come back down to nearer the starting dose, as indicated in the official ‘summary of product characteristics’ (basically, what’s in the patient information leaflet):
“Reports of hallucinations, abnormal dreams, nightmares, agitation and aggressive behaviour have resolved on dose-reduction or discontinuation of treatment”
However, if he experienced such serious side effects at just the starting dose, then there is only a very limited chance of not experiencing the same thing on the starting dose of the one he hasn’t tried yet (e.g. galantamine). They all potentially cause hallucinations, at least in their oral form. Your father’s clinician may decide that a slower release format (for example, rivastigmine as a transdermal patch) might be better tolerated. Or they may suggest a different kind of anti-dementia drug called memantine, which is the approach recommended by NICE guidelines. Memantine works on a different neurotransmitter to the other drugs, and so has a good chance of being well-tolerated. However, it may not be quite as effective in boosting cognition.
So, as you can see, there are still a few options that can be tried before giving up on drugs altogether. These should ideally be discussed between your father and the specialist treating him at the local Memory Service. However, if he still decides to go drug-free, then he would be entirely within his rights to do so. He may have dementia, but he is still best placed to make informed choices about his own medical care.
For further information on this topic, see our factsheet 'Drug treatments for Alzheimer's disease' (pdf).
I hope this helps.
Best of luck,