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Q&A: Medication - Thurs 22nd November, 3-4pm

Discussion in 'Health and wellbeing' started by SophieD, Nov 15, 2018.

  1. SimonW

    SimonW Registered User

    Nov 22, 2018
    12
    Male
    Norfolk, UK
    Hi Moxie, (please forgive the long response!)

    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,
    Simon
     
  2. SimonW

    SimonW Registered User

    Nov 22, 2018
    12
    Male
    Norfolk, UK
    Hi Flossy1,

    Thanks for your question. Although it’s quite short, it raises a lot of issues. So please forgive my lengthy response!

    As you probably know, UTIs are a very common feature of people living in residential care. In fact, most people in care homes have some bacteria in their urine (known as ‘bacteriuria’), indicating their presence in the urethra and other parts of the ‘waterworks’ system.

    The main issue in most cases is whether the bacteria are causing problems for the person, such as pain, urgency, incontinence, delirium, or fever (for lower UTIs), or nausea, vomiting, chills, or high fever (for upper UTIs - e.g. kidney infections). If so, the doctors may send a urine sample to the hospital laboratory to see what kind of bacteria are present so they can then prescribe the right kind of antibiotics. This test is called a ‘urine culture’.

    You don’t mention your mother having any of the ‘physical’ symptoms of the UTI, but this is sometimes the case with UTIs in older people – particularly if they have cognitive problems that make it difficult for them to understand what they’re feeling or communicating this to others. The immune response (for example, fever or high levels of white blood cells) is sometimes less pronounced in this age group too, so its absence doesn’t necessarily mean that nothing is going on, or that the infection doesn’t need treating. If your mother does have a ‘confirmed’ UTI (that is, confirmed by urine culture test), it’s possible that the most noticeable symptom of the infection is ‘delirium’ in the form of paranoid delusions. However, delirium does also normally involve fluctuating levels of confusion, disorientation and inability to concentrate.

    We don’t yet have a factsheet specifically on delirium (one is in the pipeline though), but the condition is briefly discussed in the Alzheimer’s Society factsheet called 'Urinary tract infections (UTIs) and dementia' (pdf). Delirium can be difficult to see on top of advanced dementia, but the main differences between the two conditions are the speed of onset in delirium (typically 1-2 days), its fluctuating levels, and its subsequent remission when the underlying causes are treated.

    The care of a person with delirium who has a confirmed UTI will probably involve taking antibiotics, but it should also include investigating other potential causes, such as pain, sensory impairment or dehydration (see UTI factsheet). Keeping them oriented as much as possible by telling them where they are, who you are, and why things are happening around them is really important, as is cognitively-stimulating activity such as friendly social interaction with family and friends – for example, reminiscence or music. This can help to reduce anxiety and keep the person rooted in reality as much as possible.

    If your mother is refusing to take her prescription drugs, including oral antibiotics or drugs to treat paranoia, then this creates something of an ethical dilemma. While she may lack the cognitive ability to do many everyday things, such as drive a car or administer her finances, this does not necessarily mean that she lacks the capacity to make an informed decision about her medical treatment. One of the roles of the doctor in such circumstances is to determine whether your mother has the capacity to make an informed choice as to whether to accept or refuse treatment. If she does appear to understand the risks and benefits of treatment, then she is perfectly within her rights to refuse it – and indeed any other care. However, a good clinician will make sure that they explain themselves very sympathetically and reassuringly to a patient with dementia and/or delirium so as to prevent a defensive blanket refusal. It doesn’t always work, and it can take a few tries sometimes before a person can be convinced that everything is OK.

    If, however, the doctor reasonably considers that (a) your mother does not have the mental capacity to give her informed consent to treatment, and (b) that treatment is in her best interests, then they do have the option of administering the medication without her consent. However, this decision should not be taken lightly and, if there are a number of options, the one that is least restrictive of your mother’s freedom should be chosen. Such a decision needs to take into account her previous wishes, if known (that is, when she had mental capacity), including any written statements she may have made, and should involve discussions with colleagues and family where possible.

    Also, given that delirium tends to be a very fluctuating condition, it might be possible to catch your mother when she is having a period of relative lucidity and obtain her consent then. In general though, these very sensitive discussions are best had with the medical team treating your mother. So don’t be afraid to ask them to explain to you all the available options.

    I hope this helps.

    Best of luck,
    Simon
     
  3. SimonW

    SimonW Registered User

    Nov 22, 2018
    12
    Male
    Norfolk, UK
    Hi Mistrymachine,

    This is a difficult one to provide good information for, as I get the impression you're not too sure what kind of dementia your mother has. This makes it difficult to provide a precise response, but I'll have a go anyway (but please do bear this in mind).

    As you know, I asked Sophie to contact you to ask about your previous mention of FTD in another post. This is because donepezil (Aricept) is NOT recommended for people with FTD. I think perhaps you may have got the wrong end of the stick with the neurologist's report - that is, 'few hyperintense foci in bilateral fronto-parietal deep white matter, representing ischemic changes'. All this means is that they've seen a bit of vascular disease in the front of the brain ('fronto-') and the top-rear of the brain (-parietal). The 'deep white matter' refers to the array of 'wiring' - or interconnections between different areas of the brain. And 'ischaemic changes' refers to narrowing, twisted or blocked blood vessels in these areas. So basically it's a bit of vascular disease in the 'connecting wires' of the brain. This might be normal, age-related disease - as is common in older people - or in some cases it can be more serious. But none of the information you've provided thus far refers to some kind of neurodegenerative disease, such as Alzheimer's disease, fronto-temporal lobe degeneration, or Lewy body disease (except some of the clinical symptoms you describe, such as severe memory loss and confusion). If at all possible, it would be very useful for her to be reassessed, if possible, to try to establish the underlying cause.

    She is certainly very young (51 years at diagnosis) to develop a neurodegenerative dementia such as AD. One of the problems with diagnosing young-onset dementia is that most clinicians consider other diseases first before coming to AD. But in this case, the doctor has come to an opinion that it is AD based on neurocognitive testing and interviewing, rather than MRI results. This is perfectly fine and happens all the time (scans are not as black and white as many people think!), but it might be worth going back to a memory service (or consultant old age psychiatrist/geriatrician/neurologist) to verify the diagnosis and adjust the medication as appropriate. If she only has vascular dementia (as opposed to AD), the the Aricept is unlikely to be doing her any good. The drug is only recommended for AD and Lewy body dementia.

    I hope this helps.

    Best wishes,
    Simon
     
  4. SimonW

    SimonW Registered User

    Nov 22, 2018
    12
    Male
    Norfolk, UK
    Hi Walsh,
    This is a very common problem, particularly as dementia progresses. The appropriate response very much depends on the medication. Is it entirely necessary to keep her alive, or is it something that she should ideally take, but if she doesn't it's not necessarily the end of the world?
    A lot of people with dementia do not get on well with donepezil (Aricept) or other anti-dementia drugs in this class. It can cause really unpleasant side effects in some people. As a result, some family members get very anxious that they are harming themselves by not taking the drug. This is actually not the case. These drugs provide only a slight boost to mental clarity in some (not all) people. So, if the side effects are really bad, and switching to alternative drugs hasn't worked, then it's not the end of the world if they choose not to take them.

    The same goes for statins, anti-hypertensive drugs, and a few others that are mainly for long-term prevention. If your mother is approaching the end of her life, these drugs are unlikely to have a massive benefit for her, so it may be worth discussing with her memory service medical team exactly which drugs are 'necessary' and which are 'preferred but optional'. They can then review her medication, try alternatives if the ones she is taking are giving her side effects, and take her off any drugs that aren't desperately needed.

    If she has very advanced dementia, then mental capacity may become an issue at some point. If she lacks the capacity to understand the risks and benefits of the treatment that is being offered, then the doctors may decide to administer any life-saving medication anyway (in some circumstances). This is a very delicate area, and in most cases we don't need to go there as often the person with dementia can be gently persuaded to accept treatment if they don't feel threatened by it. But there are mechanisms available in serious situations. You can read more in our factsheet on mental capacity.

    I hope this helps.

    Best wishes,
    Simon
     
  5. SimonW

    SimonW Registered User

    Nov 22, 2018
    12
    Male
    Norfolk, UK
    Thanks for your question. Stomach upsets are some of the most common side effects of donepezil. Some people suffer with them more than others. It sounds like your mother was OK on 5mcg/day but then developed side effect when the dose was raised?
    So, the question is to ask is: does the increase in dose provide a sufficient benefit to your mother that it outweighs the stomach upsets? If yes, then it might be worth persevering with it (the stomach symptoms do sometimes wear off after an initial period). If it doesn't seem to do much, then perhaps it's OK for her to stay on the initial starting dose. The doctor may offer to switch her to another drug in the class in the hope that it's better tolerated, but there's no guarantee. And they can also prescribe another drug called memantine (typically once the donepezil starts to wear off after a year or two). But this is something you'd need to discuss with them.
    Do remember though that drugs are only part of the solution to a behaviour like wandering (or 'walking about' as we prefer to call it these days!). For more information on easing this problem, check out our factsheet on 'Walking About' (pdf).

    I hope this helps.

    Best of luck,
    Simon
     
  6. SimonW

    SimonW Registered User

    Nov 22, 2018
    12
    Male
    Norfolk, UK
    Hi Ron,
    Thanks for your question. This sounds like a serious situation for you. At first glance, I like you would think that perhaps some kind of cardiovascular event might be the cause. But I would be really surprised if the doctors treating her didn't check this out straight away. Do you know if they did a CT scan of her brain? It sounds like they didn't. Perhaps they were able to rule it out with clinical examinations? I honestly don't know as this is a very clinical question that I'm afraid I'm not qualifed to respond to. Coping with both a UTI and a wound infection is potentially taking a lot out of her too. So, together with the cocktail of drugs she's taking on an 81-year old liver, it's a lot to deal with.

    You would be well within your rights as her carer to ask the doctor to review her medication and see if any of them can be safely discontinued. While I've not found any interactions for the ones you've mentioned, that doesn't necessarily mean that they are all necessarily fine. In general, the more drugs there are, the greater the chance of interactions.

    I hope this helps. Don't be afraid to engage with the medical team caring for her. Ask them to explain to you exactly what they have found, what treatment options are available, and which ones they recommend for her situation. Also ask how they can be confident that she hasn't suffered a recent TIA. While there's not a great deal one can do about it if she has had one some time ago, it may still be useful to know.

    Best of luck.
    Simon
     
  7. mistrymachine

    mistrymachine Registered User

    Feb 18, 2017
    7
    Thank you Simon for that valuable insight. I had a quick look at the MRI again, the only other small change they mentioned was 'mild prominence of ventricular system, sulcal spaces and cisterns is seen'. In addition she had performed poorly on cognitive assessment tests.
     
  8. SimonW

    SimonW Registered User

    Nov 22, 2018
    12
    Male
    Norfolk, UK
    #28 SimonW, Nov 22, 2018
    Last edited: Nov 22, 2018
    Depression can be a really big factor affecting quality of life in people with dementia. It can either be a perfectly normal reaction to being given a pretty life-changing, awful diagnosis. Or it can result from the daily challenges and frustrations of not being able to function as well as you used to, the loss of enjoyment of things you used to be able to do for fun, a dwindling set of friends and social life (which unfortunately still happens), loss of employment or status in the community. The list goes on... Yes, it is possible to live well with dementia, but sometimes it can be really, really hard! And it can get you down.

    The other possible cause of depression (and other mood disorders such as anxiety and apathy) can be caused directly due to damage to various parts of the brain. So if the area that regulates mood or 'rewards' (feeling good about something) becomes damaged, then the person may find it really difficult to 'feel' things as they used to - including happiness. This can easily lead to depression.

    We do have a factsheet on mood disorders, including depression. It includes some useful treatment options. I'd strongly recommend taking a look:
    https://www.alzheimers.org.uk/sites/default/files/2018-10/444LP Apathy, depression and anxiety.pdf

    I hope this helps.

    Best of luck,
    Simon
     
  9. HarrietD

    HarrietD Administrator
    Staff Member

    Apr 29, 2014
    4,321
    London
    Ok, I'm going to bring this Q&A to a close now - thanks to everyone for your questions both on here and via email. A big thanks to @SimonW for kindly giving us your time and expertise today :) I hope everyone found it helpful.
     

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