Anyone heard of memantine

[Bruce1]

Hi
I’m really pleased to find this space. My wife was diagnosed with Alzheimer’s in 2006 after 2 years of memory problems and the disease has progressed since then -the last year has been a nightmare for us both.

She is now in an assessment hospital (for 2 weeks or so after an incident involving the police) and I’m concerned about the outcome. One of the nurses told me that it is very unusual for people to be discharged back into their own homes and are usually found places in care homes. This is not what I want as I feel that I can still look after her. She also, very much, wants to stay in her own home.

Her behaviour has become difficult to manage, but I heard of medications that can help with this. Has anyone heard of Memantine (I think that’s how you spell it)? It’s not available in our PCT but I gather that it helps both with slowing the disease and behaviour problems.

 

[jenniferpa]

Hi Bruce and welcome to Talking Point.

The drug you are referring to is also called Ebixa. You can read about it (and other drugs) in this Factsheet http://www.alzheimers.org.uk/factsheet/407

Please don't necessarily discount what that nurse has to say. Nor should you second guess yourself. While it may be true that the majority of the people who end up in assessment facilities may not be discharged home (primarily because the difficulty in managing them) there is a substantial subset of people who do go home.

It all comes down to support, both for the carer and the sufferer. Some carers find it easier to manage different aspects than others and anyway, every situation is unique. What isn't unique is the support you will need - i.e. as much as possible.

 

[Norrms]

Hiya

Hiya bruce and a big welcome to talking point. i myself am on memantine (Ebixa) and since i started taking it i have discoverded i have my life back more or less. I do realise it might not work for all but for me its been a lfe saver. i was on Exelon but it didnt suit me and whilst i wasnt taking anything i was quickly getting progressivly worse but since i have been on the Ebixa i have found a new lease of life. How long will it last ??No one knows but i an so grateful to be given this drug and i sincerly hope it works for your wife. If you have any questions on this or anything else please just ask, best wishes, Norrms and family xxxxxxxxxxxxxxx

 

[Scottie45]

Hi Bruce

Hello and welcome from me to,so sorry you had to find us and i hope you will find the site useful and helpful. My mum has been on Memantine since 08 and she is also on Galamantine which she has been on since 07 when she was diagnosed.I don,t know if it helps with behaviour problems as my mum never had any behaviour problems sorry i can,t help you with that question,but i am sure there will be others along soon who can help you.Also sorry to hear that you can,t get it were you are,we are lucky that were we live in N.Ireland you can get the drug,all the best with that fight,hope you soon get things sorted out reguards your wife,take care Marian x

 

[robertjohnmills]

Homecare & Memantine

Hi Bruce,
I had to fight to keep my Partner out of residential care and so I know how you feel. However the behavioural problems (including the Police; Yes, we've been there too on several occasions)can be awesome and a real challenge.
We spent time with excellent neuro-psychitrist who initially tried Lorazepam but it was a failure and then trialled him on Memantine - the purpose being to stabilise mood and increase concentration.
To my utter surprise it made an instant difference and within one week the rows and mood swings had completely subsided. Within a few months his measured ability for concentration had improved considerably.
For the right person it has been a godsend of a drug and enabled my Partner and I to continue care in the community.
I hope this anecdotal evidence is of help, and yes we were very lucky to find a friendly PCT that would pay for the drug as it is not NICE approved. Though I really fail to understand why.

 

[lin1]

it's prob down 2 cost.

but when it works 4 a person it saves far more money. the people at NICE surgeont seem 2 realise that. Off my soapbox now

Hello Bruce.
My mum's been on Ebixa for several yrs.

it did not help with mum's behavior but it did halt the almost daily worsening of mum's mixed dementia

it seemed 2 work instantly

4 over 2 yrs mum got no worse!

unfortunately it's does.nt work 4 every1 and some people have unpleasant side effects.

I think it depends on the consultant weather its prescribed or not .

 

[Bruce1]

Thanks for the replies

Hi

Thanks a lot to everyone who replied and for the welcome, it's good to know that your not alone!

I wonder what it is with memantine. The chat I had with a health proffessional who's mother was on; Memantine, Aricept, and an anti depressant, suggested that this combination was good over a long period. The lady in question is in her eighties and lives alone (with help from relitives). Not bad for someone who has had Alzheimers for years!

I know nothing works for everyone and one shouldn't expect too much, but I think we should have a chance to give it a go. I wonder if "not routinely available" in the fact sheet means "some PCT's can't afford".

I take your point, Jennifer, about not pre judging things either way. I just want to be sure that I'v tried every avenue possible for my wife who can't do this for herself.

Thanks again for the replies, particulary; Norms, Scottie45 and Robert for their first hand informatiom.

Regards

Bruce

 

[jenniferpa]

You know, even if your PCT does not routinely prescribe it, you may find that a consultant might. Sometimes a consultant will take the position that he or she knows best what is right for a specific patient and be prepared to take a stand against their PCT. Few PCTs have a blanket prohibition re specific drugs, despite what they might claim. I'm not saying that anyone has the "right" to a particular drug, just that there maybe more leeway than might at first appear. Also, ebixa may be available if there is a clinical trial running so that might be another possibility.

 

[Bruce1]

update on Memantine

Hi, and thanks again to everyone who replied. It really does make a difference to be able to talk to people who are in similar situations.

My wife is still on the assessment ward and is now on Memantine (after quite a bit of chat with the ward doctor who said that we might have to pay for it when she is discharged). I thought things were looking up as she is much less muddled, but today she was very agressive with me and has hit one of the nurses. I think that this might be the distress of her memory comming back and her being more aware of her situation.

I would love to get her back home but I am worried by her behaviour on the ward where she wanders around all day and most of the night talking to staff and other residents, opening doors and exploring (she seems to get by with the occasional cat nap). In some ways she now seems fit in with ward life. This combined with her anger would be difficult to deal with in a small flat in a quiet block that has nothing in common with ward life. Are there care packages that could work with our situation? What will happen if she comes back and I can't cope?

Thank you to everyone who replied for your kindness - it makes all the difference!

 

[Sandy]

Hi Bruce,

It's good news that the medics were willing to give Memantine a chance to see if it could improve your wife's condition. I know other people have said similar things from time to time - that drugs that improve insight can also make challenging behaviour worse as the person with dementia is more aware of and frustrated by their situation.

I think you just have to continue to work with the assessment team to see if they can work out the best combination for now.

I think a number of people will be able to relate to your comment "In some ways she now seems fit in with ward life." Assessment units are quite variable, but a good one can show how a supportive environment and trained staff available 24/7 can meet needs that a single carer at home struggles to provide - particularly where the person with dementia has challenging behaviours and/or mobility issues.

There will need to be a thorough process of assessment and care planning prior to her discharge from hospital. The Alzheimer's Society has a good factsheet on this:

http://www.alzheimers.org.uk/factsheet/453

If your wife's needs are high, it's possible that she would qualify for NHS Continuing Care:

http://www.alzheimers.org.uk/site/scripts/download_info.php?fileID=75

Before the process of discharge arises, it might be helpful for you to get some idea of the types of care/nursing homes for people with dementia in your area. I say that as it's impossible to weigh up the alternatives without knowing what is actually available.

A good place to start is to use the search facility on the Care Quality Commission website to look for homes that care for people with dementia in your area:

http://www.cqc.org.uk/registeredservicesdirectory/rsquicksearch.asp

You can read the inspection reports online and then visit some of the homes that sound promising. You could also ask the staff on the assessment ward if they have any recommendations.

None of this will commit you to any course of action. Care home managers are used to families having to investigate their services for the first time.

Also, it can take some time to find a good home that can cope with challenging behaviour, so it's a good idea to start looking now - even if you hope never to need it.

Take care,

 

[Bruce1]

Thanks Sandy

Thanks Sandy for such a thorough, sympathetic and helpful reply.

I had a meeting with the care team of the ward yesterday and was depressed by what I heard. It seems that she has punched one of the nurses, is nearly starving herself and spends most of the night dismantling her bed. This is so unlike her usual behaviour to make me think that they are talking about another person. I don’t think I could cope with this behaviour on my own in a flat, but I just hate the thought of a care home.

I went to see her after the meeting and she looked so vulnerable. They are still trying to sort things out for me with her medication so I am still have some hopes of her coming home.

I did as you suggested and researched the care homes in my area just in case there really is no alternative, but my heart wasn’t in it. I will try again later.

I’ll use the resources you pointed me to in your reply which I very much appreciate.

Regards

Bruce

 

[Lanie]

Hi Bruce

My Mum was given memantine in November last year after it was decided that the rivastigmine she had been on was no longer working. The drug was stopped last week as it has done nothing for her and she is still going down hill fast.

My aunt who also takes memantine and has for sometime has periods of calm followed by periods of aggressiveness.

I think that every person who has dementia is unique and the drugs work differently in different people.

Assessment wards are about stabilising people and trying new medication I've been there and its not good but It may take a while but I hope they find a drug that works.

Take care

Lanie

 

[gill@anchorage5]

Options

Hello Bruce

Just wanted to let you know that we were faced with a similar situation with my lovely Dad John. Dad had Alzheimer's for over 16 years and sadly passed away last October.

3 years ago he spent 12 weeks on as assessment ward - after breaking his knee which had a dramatic effect on his mental health. At the care planning meetings a lot of "pressure" was put on my Mum to place Dad in a Nursing Home and I know she was "wavering".

I felt she was being "bulldozed" into makeing a decision and people of my Mum's generation do not challenge or question the consultants.

BUT...I gave up work and moved in with them and we brought Dad home and managed to keep him at home with appropriate support and regular planned respite breaks - hopefully giving him the best quality of life he could achieve. We managed to get NHS continuing care for the last 2 years, had regular carers and sitters and regular visits from the Older Persons Mental Health Team.

My view was that if followed the suggestion of residential care at that stage, that decision was final and there would be no going back. But if we tried caring for him at home and it didn't work out - then at least we had tried. We were giving Dad a chance and keeping our options open.

Everyone is different of course and what worked for us may not be appropriate for others. Whichever path you take I wish you all the best.

Kind Regards

Gill x

 

[patriciaann]

Yet again the service lotteries

Previous comments illustrate the huge variations in services offered to dementia sufferers. My dad has been taking memantine for 2 years, with beneficial impact on his levels of contentment. It is not available through primary care, but is issued by the psychiatric hospital, at the request of the psychiatrist who looks after dad.

Continuing care funding is a different matter, though. Our first application for a multi-disciplinary assessment went in on December 12th last year, no reply, I made another application, had a reply dated March 18th saying that a meeting would be arranged, but nothing has happened yet.

I have also discovered that often the professionals say they will organise something, but nothing happens unless you chase it up. You soon get to know which professionals follow words with action, and in our experience they are more likely to be in social care than in the medical services.

 

[lin1]

Hello Bruce.
just caught up with your thread.

I hope that they will find something that helps with your wife's challenging behaviour. it can take a while 2 see the full benefit of Ebixa.

As I said in am earlier post it didn't help with mum's behaviour, victories benefits it brought were a godsend.

Am wondering if the nurse your wife punched said or did something that provoked the aggression, like trying 2 get your wife 2 do or stop doing something.

 

[Polly H]

Hi Bruce,

My Dad was originally given the antipyschotic Quetiapine for his agressive behaviour. His medication has been reviewed recently and he has just started on Ebixa (Memantine). It's early days but the signs are looking good - he seemed to benefit almost immediately but I believe full benefit can take as long as 6 months. He is more alert physically and mentally. Soon his Quetiapine will be slowly reduced in the hope that the Ebixa will stabilise his moods.

The earlier post asking the question about what the staff member did could be highly relevant. I get very frustrated with some carers (thankfully in the minority in Dad's care home) who don't explain what they plan to do for Dad, usually personal care, then "label" him as agressive when he is verbally abusive or lashes out because he his startled/frightened.

The pycho-geriatrician who prescribed Ebixa has explained that NICE have changed their previous guidelines and the drug is now more widely available. It comes via the NHS not the PCT.

Someone on TP responded to my earlier post asking questions about Memantine, saying that they "they grab it with both hands". I am so glad we have given it a try.

Hope things go well for you and yours.

Polly H

 

[comane]

memantine

My wife has been on memantine for a year or more. It has slowed the progresion of the disease and keeps her happy. She also takes Seroquel

 

[Bruce1]

Thank you all so much for your replies to my post. It is easy to feel isolated in these situations and your comments really do help.

As far as the incident that provoked my wife’s violence is concerned all I have been told is that it was a nurse who was dressing her. I imagine she didn’t like an article of clothing or just didn’t want to be dressed. She has hit me many times in the past for no particular reason so I don’t think it was anyone’s fault. She is a kind gentle person who happens to have this wretched disease.

Clothing on the ward is quite an issue. I took lots of clothes in after she was admitted but she is always dressed in “stock” clothes. It doesn’t seem to worry her at all but it does annoy me, especially when I see other residents wearing her things. Also she has lost her watch, wedding ring and glasses. The nurse said that valuables should not be brought into the hospital but this was an emergency admission and I was too traumatised at the time to worry about such issues. I think that the depersonalising effects of not having your own clothes or possessions is a serious concern. I know how difficult it is for the staff to keep things in shape when you looking after 20 - 30 people who seem determined to undermine you. Last week my wife had 3 wedding rings! I do, however, think that the hospital should make a better effort at keeping people together with their own stuff.

The issue of Memantine (which started me off) is still very foggy. I was told by a CPN that our PCT did not permit its use and that I should forget it. When I suggested its use to the hospital doctor he said that it could be possible if I got my GP to agree to prescribe it after discharge (if I agreed to pay for it he said they may look more kindly on the request) . He said there had been problems in the past if the hospital started its use (it is OK for the hospital to use it seems) if it could not be continued when the patient is discharged. In the end it was he who contacted our GP and got their assurance about its continued prescription. I don’t know if I will be asked to pay but I did make it clear that I would if necessary. There is another issue with Memantine in that it can be used in conjunction with the other Alzheimer’s medications (donepezil, galantamine and rivastigmine) and this could increase the cost of medication for some people, but what a saving in misery if it works - also to the NHS in the long run if people are able to stay at home longer.

I am still hoping to avoid the Care Home issue for a while and will do everything I can to get my wife home. She is only 73, in robust physical health and from a long lived ancestry. She could easily live another twenty years. I think this is too long to be in a home.

Thank you all again for your replies, I can’t tell you how much it means.

Kind regards

Bruce

 

[Echo]

My Dad was agressive. He was prescribed Memantine by the consultant, he started on 5mg a day which increased over a period to 20mg a day. He has been taking memantine for about 5 months now and his behaviour is much improved. So from my experience the drug has had a positive effect.

 

[zeh]

Hi Bruce,

I wonder how much of your wife's behaviour is due to the fact that she is in a strange environment, and she would calm down as soon as she is back home. I was struggling to look after my husband with carers at home, but he was nothing like the person he became during a week's respite and has not come home since. If my circumstances had been different (we have two teenage daughters, I have to work and we have to move home soon) I would definitely have moved heaven and earth to bring him home because I think that a lot of his behaviour was due to strange surroundings and being looked after by people who didn't know him.

As for the drugs, I agree with jenny, consultants have the power to prescribe anything if they feel inclined. But I am afraid, having asked similar questions on this forum for my husband, it seems clear that each drug, and each combination, works differently for each sufferer, and the process of discovering what works best can take months and even then is hit and miss because other circumstances (infections, change of environment etc) can skew the results.

Sorry, that all sounds rather negative! On a positive note, my husband's consultant took my husband off all drugs when he went in to hospital, something that could not have been done safely whilst he was at home, and it meant one could see what the real underlying behaviour was, as opposed to what was being drug-induced. That may not be appropriate in your wife's situation, but I wish you all the best in your endeavours to find the best solutions for you and your wife.

Zoe