1. Our next Q&A session is on the topic of Christmas and dementia.This time we want our Q&A to involve our resident experts, you! Share tips and advice on navigating Christmas here in this thread.

    Pop by and post your questions or if you prefer you can email your question to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.
  1. Prospector

    Prospector Registered User

    Sep 30, 2014
    Trowbridge, Wiltshire
    Please has anyone had a similar experience when starting memantine? My wife started her memantine induction pack nearly four weeks ago and has been on the full 20mg since last Friday. When she was on 10mg and just starting 15mg, she was absolutely delightful - much calmer than she had been - and this despite having a UTI and then a cold.
    However, starting over the weekend, and now clear of her UTI and cold, she has become increasingly anxious and agitated, and very aggressive at times (grabbing and pinching me). It's like we're back to the bad days.
    The doctor has told me to drop her back to 10mg. I just hope this improves things.
    We also started her with an additional social support worker last Monday for two mornings each week, but they seem to get on very well together, so I don't think this is a factor.
    It would be good to know whether anyone else has had similar experience and what the outcome has been.
    Thank you

    Sent from my iPhone using Talking Point
  2. Tiller Girl

    Tiller Girl Registered User

    May 14, 2012
    My husband was given this last year as they couldn't give him anything else. First of all he was ok but after two or three weeks he was crying and agitated so I took it off him.

    My husband isn't too bad really, he's not aggressive or anything like that. He can still walk the dogs on his own .

    He doesn't have any medication whatsoever for his dementia as the memory clinic wont give him anything due to him having had colon cancer and he also has a heart problem.

    I'd rather him be relatively normal than have medication that changed him so drastically.
  3. Caz60

    Caz60 Registered User

    Jul 24, 2014
    Hi I can tell you that my hubby has been on Mementine for about a year .Starting at 5mgs and with a monthly increase until 20mgs was reached .When reaching 20mgs he was also unwell agitated, stomach ache ,headache .After contacting the clinic he was titrated down to 5mgs over a few weeks and then no medication at all for a month.Before the month was achieved he was unable to speak and put one word clearly so he could be understood.A decision was made between us to try again he is now on 10mgs for a while and was told by a well informed doctor to ride it out as he would settle down .Again he was unwell even on 10 mgs but after a week he is definitely calming and his speech is so much better .We are just wading through this situation as there is no alternative ,but what a shock when he had no medication,I think a compromise in a few side effects to get a better day to day quality of life is an option for you to consider.I understand it doesn't work for everyone but we are not giving in just yet ,I really do hope that you can persevere and hopefully achieve a better quality for your lovely wife.My hubby has LBD.
    Take care .xx
  4. Prospector

    Prospector Registered User

    Sep 30, 2014
    Trowbridge, Wiltshire
    Thank you both for sharing your stories. My wife's AD started as posterior cortical atrophy, and over this year she has gradually lost much of her capability and almost all initiative. She now has great difficulty understanding what is said to her and in expressing whatever is inside her head. We took her off donepezil in August after 2 years 9 months, as it didn't seem to be doing much other than make her prone to diarrhoea and so increase her risk of UTI.

    My wife was ramped up 5mg weekly on memantine from 11th September. We deliberately missed a 20mg dose this Wednesday and went down to 10mg last night. She has been quite placid since yesterday afternoon - much less aggressive, even in the morning which seems to be her worst time (she seems to get the opposite of "sundowning" every day).

    She also had yet another UTI confirmed (different bug this time) and has just started antibiotic last night. So even with UTI she seems much better on 10mg. She is not very big, so maybe 20mg was just too much.

    I shall see what the weekend brings. It can't be much worse than early this week.

    Sent from my iPhone using Talking Point
  5. JigJog

    JigJog Registered User

    Nov 6, 2013
    Hi Prospector,

    You may be on the right lines there. As a more petite lady, I know that I often have to reduce prescribed doses of medicines before I get the right balance for me.

    My husband takes 20mg of Memantine daily. He is 6' 2" and 14 st!

    It has suited him fine for the last two years. He is a lot calmer, less agitated, much more pleasant and it has certainly helped with cognitive abilities.

    I was told that it would only work for two years and then it could feel a bit like falling off a cliff! We have now just gone beyond the two years and it is still working fine.

    I asked a consultant if he could explain why it would only work for a limited time and he explained it in this way:

    Imagine a large stainless steel bowl - the brain. Now imagine holes being punched into that bowl, turning it slowly into a colander - Alzheimer's.

    Memantine comes along and fills those holes. After a while, the filler falls out, so Memantine not only has to fill the new holes that appear but go back and repair the old ones too. Eventually the point will be reached where the Memantine cannot keep up with filling the new holes and repairing all the old and although it will still be working to some extent, it will not be enough for its effects to be obvious, hence giving the impression that it is no longer working.

    My apologies if this is a bit child like but it helped me to understand. Simple soul that I am. :)

    I hope it works for your wife and that you have had a calm weekend.

    Please let us know how you get on.

  6. Prospector

    Prospector Registered User

    Sep 30, 2014
    Trowbridge, Wiltshire
    The weekend wasn't great, nor the earlier part of today. I had difficulty getting her to take her antibiotic, but she has now had six doses and only missed one on Saturday evening. It's starting to work.
    What I have noticed is that memantne seems to make it a little easier to manage her bad moods. I even got an apology the other day.
    Inverse sundowning continues - generally better mood from 3:00 or 4:00 p.m. onwards.

    Sent from my iPhone using Talking Point

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