reducing use of drugs for dementia

[spbeagle]

I have just been asked to reduce the use of drugs prescribed to my Mum for dementia and wondered if anyone has had any experience of reducing/stopping mediation prescribed for dementia?

Mum was diagnosed with Alzheimers disease in 2001 - the progression of the disease has been slow but it is now severe. She knows her name but very little else. She has been living with me, her daughter, since 2011. I thought I had found a suitable residential care home (rated outstanding for dementia care) for her but after attending it for day care for several months was told that Mum had become very disruptive and needed one to one care which they were unable to provide. Fortunately Mum now goes to a dementia day centre on 3 days each week and they seem to be able cope with her.

Mum sees a psychiatrist every 6 months and we saw a locum consultant psychiatrist last week. After asking Mum if she knew where she was, what town she lived in and what day of the week it was and receiving no reply, she asked me to confirm the medication Mum was on(for dementia) and then suggesting reducing it. Mum is on donepezil (5mg) one a day, memantine (20mg)one a day, mirtazapine (45g) one a day, She also takes calcium and ibandonic acid for osteoporosis and bisacodyl for constipation. I said I would consider a reduction in dosage and asked her what she would suggest. She asked me to reduce the memantine dosage to 10mg every other day for 2 weeks and than stop using it. I was concerned about such a significant reduction in such a relatively short time so have done some research and found that NICE now recommends memantine for severe dementia and donepezil for mild/moderate dementia. Therefore it would seem that if any medication should be dropped it should be donepezil.

 

[Beate]

You would think so but OH has been on Donepezil for well over 5 years and even though it probably doesn't do much anymore, they are not stopping it as doing that could cause a sudden downturn. In America they often use it with Memantine, here it's usually one or the other. Has the consultant said why it should be reduced in his opinion? Because that's all it is really - an opinion. No one knows how effective those drugs really are, or for how long. As long as there are no significant side effects, what harm do they do?

 

[marionq]

After a bad fall at the end of July John was referred to the Falls clinic in Glasgow. They have moved fast on a number of fronts including asking if I would like his medication reviewed. Immediately the pharmacist phoned me and discussed what he was on and what I thought about it. In fact he is now only on Trazadone as I had stopped his sleeping tablet.

I appreciated the opportunity to talk to someone knowledgeable about his medication.

 

[SEASHELL]

We had to reduce the cocktail of drugs my mother was put on as they were causing bad side effects and actually creating dementia like symptoms. I'm still struggling to get them to lower the medication now. Some Doctors are very quick to dish out these drugs but the total opposite when it comes to admitting they might be causing problems and lowering them.

 

[LadyA]

My husband was on several medications including memantine, risperidone, trazadone & exelon (rivastigmine) for several years. Thankfully, he didn't seem to suffer side affects from them, other than the desired effects - switching off his paranoid psychosis, hallucinations, and extreme agitation. His consultant tried reducing his meds a few times over the years, but his hallucinations immediately came back. So he was left on the meds. While I do agree that medications need to be reviewed regularly, and those that are no longer needed should be reduced and/or discontinued, I also would be closely questioning consultants & doctors as to why they feel they are no longer necessary, and making sure they can be re-instated if necessary. Because sadly, like over here, there could be simple cost-cutting involved.

 

[Risa]

I have stopped medicine for Mum using the cutting down method described but this was only because the meds were not having any effect. Spbeagle if your Mum is not suffering any bad side effects and her condition is manageable, in your shoes I would want to know what outcome the psychiatrist is hoping for by taking her off memantine. If it is a case of take her off the meds and see what happens, it doesn't seem very kind to use your mum like a guinea pig.

 

[Padraig]

When I removed my wife from a Nursing Home I was furnished with a bag of the numerous daily medications they administered to her during her short stay. The medications I handed over to my local surgery and informed the lady doctor that I failed to understand their usefulness. She agreed, but strongly recommended I retain the bottle of paracetamol suspension for the relief of pain from bed sores. My objective was to treat the underlying causes of some illnesses. Pity the staff at the NH had not seen to it that they avoided pressure sores in the first place.
Once the sores were cleared there was no requirement for medication. As she could no longer move or feed herself it was not surprising she suffered with severe constipation. The simple remedy was to add a dash of Lactulose to her drinks. She was in good physical health over the following final four plus years.

 

[Theyeaut]

When I removed my wife from a Nursing Home I was furnished with a bag of the numerous daily medications they administered to her during her short stay. The medications I handed over to my local surgery and informed the lady doctor that I failed to understand their usefulness. She agreed, but strongly recommended I retain the bottle of paracetamol suspension for the relief of pain from bed sores. My objective was to treat the underlying causes of some illnesses. Pity the staff at the NH had not seen to it that they avoided pressure sores in the first place.
Once the sores were cleared there was no requirement for medication. As she could no longer move or feed herself it was not surprising she suffered with severe constipation. The simple remedy was to add a dash of Lactulose to her drinks. She was in good physical health over the following final four plus years.

that's amazing. I mean, it is amazing to know such kind of information..

 

[Padraig]

that's amazing. I mean, it is amazing to know such kind of information..

Like most things in my life I had to learn on my own. There was nobody there for me as I grew up. My learning has been the University of Life. I still take no medication or ask for support as I manage to survive stomach cancer. After more than six years without a stomach I found my own treatment and they say there's only a 15% survival rate for this type of cancer!

I've attempted to attach photos of my wife in the Nursing Home and ones of her vast improvement after I had her home for nine months. Seems I lost the knack of transferring them on to here, sorry.

 

[Canadian Joanne]

My husband was on several medications including memantine, risperidone, trazadone & exelon (rivastigmine) for several years. Thankfully, he didn't seem to suffer side affects from them, other than the desired effects - switching off his paranoid psychosis, hallucinations, and extreme agitation. His consultant tried reducing his meds a few times over the years, but his hallucinations immediately came back. So he was left on the meds. While I do agree that medications need to be reviewed regularly, and those that are no longer needed should be reduced and/or discontinued, I also would be closely questioning consultants & doctors as to why they feel they are no longer necessary, and making sure they can be re-instated if necessary. Because sadly, like over here, there could be simple cost-cutting involved.

This was exactly our experience with our mother. Fortunately, here we seem to have far more input as to medications (we did have health & welfare PoA). My sister and I decided we would keep Mum on the Alzheimer's drugs as long as she was physically able to take them. Over the years, we gradually reduced the behavioural drugs.

So, as LadyA says, medications need to be reviewed regularly. But I understand cost-cutting may be part of the equation. That I would question very closely.

 

[SEASHELL]

My husband was on several medications including memantine, risperidone, trazadone & exelon (rivastigmine) for several years. Thankfully, he didn't seem to suffer side affects from them, other than the desired effects - switching off his paranoid psychosis, hallucinations, and extreme agitation. His consultant tried reducing his meds a few times over the years, but his hallucinations immediately came back. So he was left on the meds. While I do agree that medications need to be reviewed regularly, and those that are no longer needed should be reduced and/or discontinued, I also would be closely questioning consultants & doctors as to why they feel they are no longer necessary, and making sure they can be re-instated if necessary. Because sadly, like over here, there could be simple cost-cutting involved.

It sounds like you have a good consultant. From my experience most if not all of the doctors that have treated my mother have been very reluctant to try and see if the medication's causing problems and one disgrace of a doctor even told me in a really patronising way that I should look at the postives. This despite the hospital contacing the surgery to call for a review. Some doctors don't seem at all bothered about cost cutting when it comes to dishing out tablets to elderly people. They dish them out like smarties.

 

[jochrisbryan]

When I removed my wife from a Nursing Home I was furnished with a bag of the numerous daily medications they administered to her during her short stay. The medications I handed over to my local surgery and informed the lady doctor that I failed to understand their usefulness. She agreed, but strongly recommended I retain the bottle of paracetamol suspension for the relief of pain from bed sores. My objective was to treat the underlying causes of some illnesses. Pity the staff at the NH had not seen to it that they avoided pressure sores in the first place.
Once the sores were cleared there was no requirement for medication. As she could no longer move or feed herself it was not surprising she suffered with severe constipation. The simple remedy was to add a dash of Lactulose to her drinks. She was in good physical health over the following final four plus years.

Not sure if you will see this Padraig, I always value your wisdom in how you cared for your wife and the ways you have. My Grandma despite the dementia up until recently was in good health, since a UTI and becoming incontinent not double till a fall last two weeks. Now due to maybe shock to her body, appetite gone and now constipation (previously I had this perfect via a good diet alone. Dr prescribed Senna which despite being herbal has created terrible explosions which in turn are creating further risk of UTI's and sore skin from constantly cleansing and the terrible distress as she feels terrible as anybody would. Did the Lactulose work gently as she gets so distressed I would love to have a mild solution.