Alzheimers fatigue or Memantine side effects.

Discussion in 'I have a partner with dementia' started by lauriets, Feb 15, 2019.

  1. lauriets

    lauriets New member

    Feb 15, 2019
    5
    Hi All, My wife has had Alzheimers for about 5 years,she is on 10mg of Memantine per day.She is almost always tired out,we tried halving the dose of Memantine to 5 mg to see if this would reduce the tiredness (it did not) She will not let me stop the Memantine completley. I have read about Alzheimers fatigue and the side effects of Memantine (tiredness) but I have no idea which one is the problem or what to do if I knew. Most days she cannot get out of the chair and rtemains in her night clothes the whole day.She hes lost her short term memory but she is still the wife I know,It is bad enough having Alzheimers without having the extreme fatigue as well,can anyone help with advice if they have experienced this with their loved one?
     
  2. karaokePete

    karaokePete Registered User

    Jul 23, 2017
    5,023
    N Ireland
    Hello @lauriets, you are welcome here and I hope you find the forum to be a friendly and supportive place.

    It's true that sleepiness is listed as a common side effect of Memantine so a chat with the GP may elicit some help. I wouldn't stop the Memantine without medical supervision as my wife was taken off this med last year, during the investigation of a physical symptom, and her dementia worsened very quickly.

    I hope you have the time to take a good look around the site as it is a goldmine for information. When I first joined I read old threads for information but then found the AS Publications list and the page where a post code search can be done to check for support services in ones own area. If you are interested in these, clicking the following links will take you there

    https://www.alzheimers.org.uk/get-support/publications-factsheets-full-list

    https://www.alzheimers.org.uk/find-support-near-you

    You will see that there are Factsheets that will help with things like getting care needs assessments, deciding the level of care required and sorting out useful things like Wills, Power of Attorney etc., if you haven't dealt with these things already.

    Now that you have found us I hope you will keep posting as the membership has vast collective knowledge and experience.
     
  3. nellbelles

    nellbelles Volunteer Host

    Nov 6, 2008
    8,518
    leicester
    Hello @lauriets and welcome to TP
    I wonder if it would be worth seeing the GP, maybe some blood test as well In case it’s not the Memantime and there is another cause of the tiredness
     
  4. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,550
    East of England
    I am experiencing this with my husband but as always with this disease not exactly the same. He does get up and dressed eventually. He is constantly tired, sits in his chair and then on his bed, breathing as if it’s his last. I believe that it is the disease which gradually affects all aspects of function. His doctor agrees and has gradually reduced the donezepil so that now he is not on anything. It makes no difference, the downward trajectory is slow and steady. It is hard going but in his case there is nothing wrong and he has symptoms of lung and urinary function problems without any illness. This makes life difficult as in the tale of cry wolf, when you can miss something because you don’t think there is anything wrong. So far I have been right but I try to be careful.
     
  5. margherita

    margherita Registered User

    May 30, 2017
    2,458
    Female
    Italy, Milan and Acqui Terme
    My husband has been on memantine ( Ebixa) for two years. It seems to have slowed down the progression of Alzheimer's, but we can't be sure about it. Nobody can tell what would have happened if he had not taken it.
    He has been sleeping better and having a nap in the afternoon since he is on memantine.
    He is quieter, but not sleepy. If this is a side effect , it is good one.
     
  6. lauriets

    lauriets New member

    Feb 15, 2019
    5
     
  7. Gpolli

    Gpolli New member

    Feb 2, 2019
    6
     
  8. Gpolli

    Gpolli New member

    Feb 2, 2019
    6
    My husband is in 20mg mamentine,I was advised to give it to him late in the evening,and thus helps,he died have other side affects seeing children and small animals,to moving floors,I have tried halving,to 10mg morning,10mg night,but made the sleepiness worse,it's all trial and error,not easy
     
  9. RosettaT

    RosettaT Registered User

    Sep 9, 2018
    333
    Female
    Mid Lincs
    My OH has been on Memantine almost since the begining as Donepezil gave him headaches. As far as I'm aware he hasn't had any side affects. He takes 20mg but we were told to take it at bedtime as it can make you sleepy.
     
  10. malomm

    malomm Registered User

    My wife has 10 mg. first thing in the morning, and 10 mg.last thing at night. This has reduced her aggression over the past 2 years, but does make her sleepy. I think also that the progression of the disease contributes to slowing her down a lot. She is 87, and has had AZ since 2008, so she is now in the later stages, just becoming incontinent, has difficulty walking, and can no longer communicate properly. I am expecting her consultant to recommend reducing both memantine and quetipiene before long. He should be making a home visit at the end of this month or early March. In the meantime I force her out of bed to walk around the house a bit to keep her mobile and also take her meals. I wouldn't tamper with medication without professional advice.
    best regards and keep smiling.
    malomm
     
  11. malomm

    malomm Registered User

    Hello again lauriets, I should add that during my early wanderings through the darkness of the wastelands of this awful disease, this forum and its wonderful members became my compass and a beacon to the light at the end of the tunnel.Do keep posting here and explore the wealth of information and experience that is available. Also get and take as much help as you can from family, friends, and the institutions. You will need it, and so will your wife, as she tries and fails to understand what is happening to her
    Best regards and keep smiling,
    malomm.
     
  12. Alltalkandnocustard

    Alltalkandnocustard Registered User

    Aug 29, 2018
    13
    My mam has recently been put on memantine and it has made a massive difference to her behaviour. We are 7 years into the diagnosis and she was angry all the time for the last year. This has subsided with the memantine so she is her usual self again but the tiredness has been difficult. We are still working up to 20mg but I'm wondering if that is going to be too much now.

    Her appetite is the most affected. She was always eating and hungry before but now struggles to eat even half her plate. Could this just be the tiredness?
     
  13. karaokePete

    karaokePete Registered User

    Jul 23, 2017
    5,023
    N Ireland
    Hello @Alltalkandnocustard, whilst sleepiness is a listed common side effect of Memantine, loss of appetite is not listed in any category of side effect. I haven't seen that with my wife.

    One thing that could be going on is that your mam is losing her sense of taste as that happens with dementia. Foods that were once favourites can start to be less appetizing. Sweet and sour are the last sensations to be lost and this is why the common 'dementia sweet tooth' is developed. Try sweeter foods/drinks to see if they are taken.

    Another thing that happens is that the person loses the ability to cope with a big plate of food as they can no longer think to just take what they need - they are confused by the size. Smaller portions can help with that.

    A last thing that I can think of is that the person can lose the ability to use cutlery so assistance may be required there.

    In the hope that it helps, here's a link to the relevant Society Factsheet. Just click the PDF line to read and/or the document
    Eating and drinking (511)
    PDF printable version
     
  14. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,550
    East of England
  15. Alltalkandnocustard

    Alltalkandnocustard Registered User

    Aug 29, 2018
    13
    The issues with portion sizes were something we dealt with before the new medication and I have been making them smaller and giving bits at a time (eg half a sandwich followed by another) which worked well. The main change recently was the memantine and the difference was instantaneous.

    Now she just gives up half was through no matter the portion size. I'm always on alert to see if I can see a link to another factor. I just wonder if being tired disrupts their attention span and makes eating a bit more tiring.
     
  16. karaokePete

    karaokePete Registered User

    Jul 23, 2017
    5,023
    N Ireland
    When a new adverse development coincides with going on to a new med I would always run it past the GP or Memory Clinic.
     
  17. Alltalkandnocustard

    Alltalkandnocustard Registered User

    Aug 29, 2018
    13
    Thanks for the advise. I will run it past them to see.
     
  18. Bee.quilt

    Bee.quilt Registered User

    Dec 29, 2017
    81
    I too have been really concerned about sleepy OH in nightclothes 24/7 unless bullied out of them. The least venture out of the house, attempt to sweep leaves, walk round the garden etc send him back to bed and sleep for 2 hours. I witnessed the same with my dear friend, (now in end of life stage, )and my neighbour reports the same with his wife—(vascular dementia.)GP asked if I though OH was aneasthetised (??) but a 10 minute appointment every six weeks can’t assess the everyday reality so down to the judgement of the person closest. It’s difficult to watch an active adult sink into a waking coma. I don’t know the answer for you or me. Seems a dreadful consequence of brain shutting areas down. I think we can only do the best with what we know. I share your feelings and those of all contributors here. All we can do is our best—there’s nobody else to take over. Wishing good health and the energy to keep trying and stay cheerful. XxB
     
  19. lauriets

    lauriets New member

    Feb 15, 2019
    5
    Thanks for all the advice on tiredness. My wife has a yearly assessment with her GP since she was diagnosed(five years).We have never seen a Consultant since then,is this normal? Recently we saw a Mental Health Nurse instead of the GP(at the yearly assessment) she refered us to a Mental Heath Facility(what I thought was going to be session with a consultant) It turned out to be a tick list of questions and the answers were to be shown to the Team Leader a few days later.The Team Leader was a pychiatrist who recommended Antidepressants even though he/she had never seen my wife before.Is any of this normal practice?
     
  20. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,550
    East of England
    Hello @lauriets I have reservations about the quality of your experience because it doesn’t seem to be tailored to your wife but as you say a tick box experience. I think this is the default position of many areas of the country and best practice is like gold. My experience was that my husband saw the consultant 13 months ago who gave the tests and the diagnosis. I had three visits over three months from the mental health nurse who gave me a folder of leaflets and then he was discharged back into the care of the GP, because basically there is nothing else they have the resources to do. This is the normal situation in our area and if you want to see a consultant you can certainly ask, but only if it would be of any benefit. He has had two GP check ups, entirely on my initiative, but which were good because we saw an excellent young doctor who could not have been more candid. To be honest I am now the person responsible for planning and executing my husband’s care and this website is the best support for me. I think that the dementia trajectory has continued slow but sure in all areas of his functioning with or without donepezil, which he is now off. He is relatively happy, non aggressive and as long as he is in his familiar setting he is ok. I have posted on another thread about his sleeping more and more as time goes by. I would estimate that he is either on or in his bed dozing or asleep 75% of the time. He can only eat small easy to eat portions of food, as above but he is definitely eating less, his activities have declined because he has no desire to do them any more. I am following the U Tasmania Understanding Dementia course and realise that the palliative type of approach I am using is correct. Whatever keeps him stable and contented is the right course and I feel no need to be doing all the busy things that commonly get recommended. He looks at photographs and some of his old work magazines, I have recently taken him on a cruise with mixed results because bad anxiety is now a feature of his dementia, a common symptom as dementia worsens. Lots of support for your efforts to care for your wife and trust your instincts I think, nothing is a must because every one is different.
     

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