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  1. Expert Q&A: Protecting a person with dementia from financial abuse - Weds 26 June, 3:30-4:30 pm

    Financial abuse can have serious consequences for a person with dementia. Find out how to protect a person with dementia from financial abuse.

    Sam, our Knowledge Officer (Legal and Welfare Rights) is our expert on this topic. She will be here to answer your questions on Wednesday 26 June between 3:30 - 4:30 pm.

    You can either post questions >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll answer as many as we can on the day.

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

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

  1. SophieD

    SophieD Administrator
    Staff Member

    Mar 21, 2018
    911
    London
    Do you have questions about medication and drug treatments for dementia?

    There's no drug to cure dementia yet, but it's often possible to relieve some symptoms.

    Our next expert Q&A will be hosted by Simon from our Knowledge Services team. He will be answering your questions on Thursday 22nd November from 3-4pm.

    Want to ask questions in advance, or don’t think you can make it? Feel free to post on this thread to be answered during the session. Or if you prefer, send your question to talkingpoint@alzheimers.org.uk and we’ll be happy to ask them on your behalf.

    We hope to see you there :)
     
  2. katydid

    katydid Registered User

    Oct 23, 2018
    25
    Hallo. My husband has vascular dementia, and is so variable it’s a nightmare. Some days he just sits and sleeps. Unable,to,stand,or,walk, but this can change,hourly. other days he talks, and fiddles, nothing I’ll hold his interest, and whatever I am doing, all I hear is my name constantly. This can change from irritating to suddenly aggressive.Plus aggressive shouting, throwing things, cushions, sweets, the worst so far, a cup which shattered.
    He now has hallucinations, has lost language skills, and cannot process anything, talking, understanding, or moving.
    He shuffles in a Parkinson’s like gait, although our Consultant insists he has not got Lewey bodies,
    So my question is there any medication which can keep him calm? Or at least on some sort of plateau, which will stop me getting that awful stomach dropping feeling,when he changes persona at the drop of a hat,
     
  3. Thursdayschild

    Thursdayschild Registered User

    Jul 27, 2014
    9
    Male
    London
    Hi, my question is - are the pills still worth carrying on with?
    My wife has young onset Alzheimers, she is now 66 and in a care home. Her MMSE was 3, but really untestable, said the consultant in July 2017. She is now doubly incontinent so I guess pretty advanced. She speaks but rather limited - but she knows me and few other close people as famliar bt canot place us.
    But she is on maximum Donezepil and Memantine plus Citalopram at a high dose for a low mood. Her meed has improved, but she gets a 'shake' sometimes (a bit like people with Parkinson's). Her walking is OK but very slow but she can't do stairs.
    So shoud we continue witht he same medications? Are they doing more good than harm?

    Thanks - Thursday's child.
     
  4. leafylaine

    leafylaine Registered User

    Dec 16, 2016
    2
    Hi.
    My question is about moving from Donepezil to another drug.
    My dad has been on 10mg Donepezil since being diagnosed with Alzheimer's in 2015. I was told that he should take this for the rest of his life, but am not sure if other drugs are available to him as he moves into the middle to later stages of the disease? He is rapidly declining and if there is anything that can help slow this decline, now that the Donepezil is no longer having any effect, I would like to get him on it as soon as possible. Thank you.
    Elaine.
     
  5. Teacake

    Teacake New member

    Oct 23, 2018
    3
    My mum has been taking Donepezil 5mg for about 3 months now, has worked great apart from cramps. It was only at night to start but recently it’s all day now. Any tips on how to stop these, or even calm them down as we have tried everything
     
  6. SophieD

    SophieD Administrator
    Staff Member

    Mar 21, 2018
    911
    London
  7. moxie

    moxie New member

    Apr 21, 2018
    1
    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?
     
  8. Flossy1

    Flossy1 New member

    Nov 21, 2018
    1
    My mother (87) is in a dementia care home and has been diagnosed with a urinary tract infection but refuses to take her antibiotics. The main symptom of her dementia is paranoia and delusions. Are these being made worse by her infection? Her only symptom is frequency and she is still continent. She is currently not on any medication for her paranoia as she refuses to take any. Advice please?
     
  9. mistrymachine

    mistrymachine Registered User

    Feb 18, 2017
    16
    My mother (55) has early onset dementia. Unfortunately we live in a country which does not have a good memory clinic so we had to go abroad to get her diagnosis about two years ago. However, the doctor only diagnosed her with dementia and prescribed her Aricept (5mg) without specifying which kind of dementia. Nobody in her extended family ever suffered from dementia so its all new to us. Her symptoms became more obvious about 4-5 years back. Anyway she is now on this medication together with vitamin and ginkgo biloba supplements for about two years. But since last two weeks she has begun talking to herself continuously about random things mostly about distant past. Previously she was more calmer and would follow her daily routine. She has forgotten many of her skills. But last two weeks she is arguing over taking shower, brushing her teeth and even going to bed (because she is constantly talking). However, her answers to some of our questions seem to be more lucid unlike previously. Is there some kind of hyperactivity stimulated by Aricept and is there something we can do to calm her down as I am worried that she is not getting enough rest and it can make things worse.
     
  10. walsh

    walsh New member

    Sep 3, 2018
    3
    Male
    london
    my mother is refusing to take a medication, what should i do
     
  11. Daughter82

    Daughter82 New member

    Nov 22, 2018
    1
    Hi my mum is taken donepezil 5mg, tried on 10mg but it upset her stomach. Is there anything else the doctor could prescribe? That would calm the wandering down as she never sits down unless you tell her.
     
  12. SophieD

    SophieD Administrator
    Staff Member

    Mar 21, 2018
    911
    London
  13. Ron

    Ron Registered User

    Oct 1, 2012
    5
    My 81 year old mum was admitted to hospital on Monday with sudden loss of ability to walk and weakness in left arm and dehydration (she just won't drink enough)
    She was already being treated for a UTI and a wound infection. The doctors can find no reason for the lack of mobility. I'm really worried about a TIA and have concerns about polypharmacy as she is on Tolterodine, Mematine, Clopidogrel, Bueprenorphine, Rampril, Adcal, Paracetamol and Rosvastain alongside antibiotics and an anti clotting injection whilst not mobilising.
    Should I try and push for a brain scan? She lives alone with carers twice daily and family popping in, hospital want to discharge her to home.
     
  14. SophieD

    SophieD Administrator
    Staff Member

    Mar 21, 2018
    911
    London
    Below is a question we received via email:

    My mum has dementia and currently seems very down ie depressed. Can she be prescribed anti depressants. Or is this something we have to learn to deal with
     
  15. SophieD

    SophieD Administrator
    Staff Member

    Mar 21, 2018
    911
    London
    Hi everyone, and welcome to today's Q&A on medication :)

    Our expert Simon, (@SimonW), is here to answer your questions on this topic.

    Please note that we'll be starting with the questions that have been sent in previously via email and on this thread.

    NB: Simon will try and help as best as he can, but please be aware that he isn't able to provide medical advice.
     
  16. SimonW

    SimonW Registered User

    Nov 22, 2018
    19
    Male
    Norfolk, UK
    Hi Everyone,
    Welcome to the Q&A session. I'm the Knowledge Officer at Alzheimer's Society who handles all the health and wellbeing issues. I'm a scientist by training and my role is mostly to explain complex medical and scientific issues around dementia in clear and simple language. I'm afraid I'm not a qualified clinician though, so I can't do online diagnosis or provide medical advice.

    I'm really looking forward to the session this afternoon, so keep the questions coming! :)
     
  17. SimonW

    SimonW Registered User

    Nov 22, 2018
    19
    Male
    Norfolk, UK
    Hi Katy,

    It sounds like you have an awful lot to cope with here! I’ll try to address your individual questions but, overall, I’d say that you need help from someone properly trained to investigate these kinds of situations – particularly the volatility issue. You should already have access to a community mental health nurse through the local Memory Service. I’d strongly recommend you contact them and ask for assistance. It’s what they’re there for.

    The main reason why I’m suggesting this route, rather than dealing with it entirely by yourself, is that the symptoms you describe might be a sign of an underlying medical condition (aside from the dementia) that needs treating. This could be a recent unnoticed event (such as a mini-stroke) or a new emerging condition, infection, pain (e.g. toothache, backache, arthritis), depression/anxiety, or perhaps the side effects of recently changed medication. If so, then a thorough clinical examination might reveal it and allow it to be resolved without having to resort to antipsychotic drugs or mood stabilisers, which tend not to be very effective in such situations anyway and have serious side effects and risks. Antipsychotic drugs tend to only be used by doctors for very short periods in dementia, and only a last resort when a person’s safety is at risk.

    Aside from medical conditions, it’s possible that your husband may be struggling to either understand or communicate an ‘unmet need’. This can include being physically uncomfortable, bored/under-stimulated, overwhelmed/over-stimulated, scared (particularly with hallucinations), anxious, lonely, tired or frustrated. Each of these has a potential solution (perhaps not a perfect one, but at least something that can help).

    Try to put yourself in his position as much as possible, taking into account his pre-dementia personality and the cognitive difficulties that make processing thoughts and feelings so much more difficult for him, and then look for clues as to what might be causing the problem. Once you’ve identified a potential cause, try to come up with a solution and try it out. If it works, then great. If not, then try something else or look for another potential cause. It may take several attempts before you find something that makes a difference, so patience and perseverance are key.

    I’d recommend reading our factsheet on 'Changes in behaviour' (pdf), which sets out some of the typical reasons for these kinds of problems and how best to manage them. It’s a really excellent resource (I didn’t write it!) and may suggest some solutions you’ve not yet tried.

    There is also a good factsheet on coping with sensory difficulties (pdf), which includes how to deal with hallucinations.

    You can also make good use of the Alzheimer’s Society National Dementia Helpline (0300 222 11 22) while you’re waiting to see the consultant or community mental health nurse. The main thing is that you shouldn’t feel you have to do this alone. Get expert help.

    Best of luck,
    Simon
     
  18. SimonW

    SimonW Registered User

    Nov 22, 2018
    19
    Male
    Norfolk, UK
    Hi Thursday’s Child,

    The decision as to whether to continue taking anti-dementia drugs during advanced dementia is often a difficult one – not just clinically but also emotionally for the family. For some, discontinuing can feel like giving up. But in reality these drugs typically only help a little bit, when they help at all. One does occasionally hear of cases where the family has observed a rapid decline following discontinuation, but in general it seems to be fairly rare.

    For quite some time after the introduction of drugs like donepezil, doctors typically would stop them once a person went beyond the moderate stages of dementia as there was little evidence that were clinically useful beyond this point. However, a few years ago a major study was carried out in the UK which compared people with moderate-to-severe dementia who had these drugs withdrawn versus those who stayed on them.

    The results of the DOMINO study showed that, on average, staying on the anti-dementia drugs was associated with slightly better cognitive function and quality of life than discontinuing them. Since then, the National Institute of Health and Clinical Excellence (NICE), which issues treatment guidelines to doctors in England, has recommended that people with dementia should not have their anti-dementia drugs (such as donepezil, rivastigmine, galantamine and memantine) withdrawn solely because of the advanced nature of their condition. However, if the person taking them is experiencing unpleasant side effects, then it may be worth considering whether these outweigh the potential benefits of taking the drugs. It’s a very individual judgement call to be made by clinicians and family members. For example, the Parkinson’s-like ‘shake’ you describe is potentially a side effect of the donepezil – as are muscle stiffness and cramps. So, if these are adversely affecting her quality of life, then this would be a factor to consider when deciding whether to continue with the medication.

    On a side note, it sounds like communication is becoming more challenging. Do check out this factsheet for tips on better communication (pdf) – particularly the part about body language and physical contact.

    I hope this helps.

    Best wishes,
    Simon
     
  19. SimonW

    SimonW Registered User

    Nov 22, 2018
    19
    Male
    Norfolk, UK
    Hi Elaine,

    Thanks for this question. There is another drug that can sometimes boost cognition a little bit. It’s called ‘memantine’ and it works differently from drugs like donepezil, rivastigmine and galantamine (collectively known as ‘cholinesterase inhibitors’). Memantine tends to be used either as a booster once the initial benefits of donepezil have started to fade, or as an alternative to cholinesterase inhibitors during the early stages if the person cannot tolerate them.

    Please be aware though that the effects of memantine are fairly small. The drug may help, but perhaps only to make the decline in symptoms slightly less rapid.

    Although the drug options become very limited from this point onwards, the importance of non-drug approaches to enhancing quality of life remains undiminished. While there may seem to be many such ‘interventions’ with formal names, the common elements they share are that they help the person with dementia stay mentally, socially and physically active, remain engaged in the wider world, and be valued as part of the community for as long as possible. Focus on using the strengths and capacities your father still has at his disposal, rather than dwelling on those which have been lost.

    For further information on this topic, see our factsheet 'Drug treatments for Alzheimer's disease’ (pdf).

    I hope this helps.

    Best wishes,
    Simon
     
  20. SimonW

    SimonW Registered User

    Nov 22, 2018
    19
    Male
    Norfolk, UK
    Hi Teacake (great name, by the way!)

    Muscle cramps are a very common side effect of donepezil are and probably caused by the drug working on nerves in the muscles as well as those in the brain. Unfortunately, this is a common problem with drugs taken orally that travel around the whole body – they act on parts they’re not intended for.

    I assume you’ve tried all the normal treatments for muscle cramps, such as stretching or oral rehydration salts, so I won’t go into any detail on these. And your mother is still only on the starting dose, so she can’t reduce the amount she takes each day. Does she take any other medicines that might also contribute to this problem, such as a statin or a diuretic? Have a look at the patient information leaflets of these other medicines to check if it’s listed as a potential side effect. If so, the doctor may wish to review her medications and perhaps ‘deprescribe’ or switch one or more of them if they think it appropriate to do so. They may also wish to check for circulation problems in the legs to make sure there isn’t a more serious cause of the cramps.

    As for alternative anti-dementia drugs, it’s possible that one of the other two drugs in this class may be less likely to cause muscle cramps. Donepezil is well-known for this problem, whereas rivastigmine does not list muscle problems as one of its side effects in its official 'summary of product characteristics' and galantamine lists only muscle ‘spasms’. Rivastigmine still has its own side effects, of course, but if your mother has not experienced any other serious problems with donepezil, then she might find she gets similar benefits from donepezil without the horrible muscle cramps. Again, this is something to discuss with the specialist clinician at the local Memory Service.

    If this doesn’t work out well for her though, then NICE guidelines recommend that patients can switch to another drug called memantine, which works on a different neurotransmitter. While memantine may not have as great an impact on cognition as the cholinesterase inhibitors (which is not that much in the first place), the evidence suggests that it’s still worth taking if other drugs are poorly-tolerated.

    For further information on this topic, see our factsheet 'Drug treatments for Alzheimer's disease’ (pdf).

    I hope this helps.

    Best wishes,
    Simon
     
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