Mum refusing donepezil

[Milvus]

Mum was started on Donepezil two weeks ago when diagnosed with Alzheimers. The psychiatrist visited yesterday to check that it hasn't lowered her pulse rate. Everything fine and she's had no side effects. The psychiatrist asked if she was happy to continue with the tablets and she said that she didn't see the point as she is fine as she is.

We were hoping for some benefits from this so it's really frustrating that she's refusing it. She is certainly far from fine as she is. She can do next to nothing and lives in a cloud of confusion. She said the other day that her father was prescribed something back in the 70s when he had dementia and it made him hallucinate so I think that worries her even though I've told her it's not the same medication.

I've tried to reassure her but was accused of having a hidden agenda! I've told my brother he can deal with this as she listens to him. He also has Power of Attorney - could he use this to override her decision?

 

[Grannie G]

He also has Power of Attorney - could he use this to override her decision?

I don`t think so, especially if she is still considered to have capacity and I`m not sure of the position even if she is deemed to have lost capacity.

My husband refused his medication for diabetes and the GP just put it on record.

 

[nitram]

If she has lost capacity the correct procedure is a formal best interests meeting.

Having said that many people covertly administer crushable medication in yoghurt or similar having made an informal best interests decision with the GP even if capacity is not lost.

 

[Milvus]

If she has lost capacity the correct procedure is a formal best interests meeting.

Having said that many people covertly administer crushable medication in yoghurt or similar having made an informal best interests decision with the GP even if capacity is not lost.

All her medication is contained in a blister pack which is locked away in a secure box and administered by carers (with great difficulty as she doesn't know to put tablets in her mouth). She wouldn't know what she was taking anyway.

 

[nitram]

That makes it difficult, all the carers can record is 'offered but refused'.

You could ask the prescribing clinician if they think it's worth pursuing covert administration and the necessary best interests meeting and then using an oral solution https://www.medicines.org.uk/emc/medicine/29149#gref . as the tablets have to be taken whole

 

[MaNaAk]

When dad first started donepezil it made him dizzy and after a couple days he refused it! Of course I was desperate and the next day I told dad that I was going to the chemist to ask about his medication. I was told that dad should have donepezil at bedtime rather than with dinner and related this to dad and luckily he accepted this. We did have other issues with medication but sadly this is part of the course.

MaNaAk

 

[jennifer1967]

if the gp gives permission to carers and writes it down and sign to say that the person has lost capacity and couldnt have a reason debate about the merits of taking and not taking it only then can care staff offer the tablet covertly crushed in teaspoon of jam or whatever other wise its abuse. even then, the person cant be forced to take it. covertly is just hiding the tablet

 

[Palerider]

I had a direct chat with mum when I first encountered her refusal just after my dad died. To be fair she was able to understand my explanantion at the time, but I told her that it was a really important tablet and that if she took it I would be able to help her and if she didn't I would not be able to say what the future held. She mulled it over and after that she took it -we got through four years of mum being fairly stable before it stopped having any effect.

 

[Milvus]

Well, to update - my brother persuaded Mum to take the tablet and something must be helping because she has now started phoning us on her dementia phone which is something she hasn't been able to do for a while. ?

 

[Ramblingrose]

We struggled to get my mum to take donezipil a first. She convinced herself she was suffering with side effects but we persisted after discussions with the memory clinic. Finally after years her GP told us to let her stop taking it as it wasn't doing her any good. Alas he didn't offer an alternative. Memory Clinic discharged her about three years ago telling us she was stable? How they arrived at that conclusion I'll never know.

 

[Milvus]

We struggled to get my mum to take donezipil a first. She convinced herself she was suffering with side effects but we persisted after discussions with the memory clinic. Finally after years her GP told us to let her stop taking it as it wasn't doing her any good. Alas he didn't offer an alternative. Memory Clinic discharged her about three years ago telling us she was stable? How they arrived at that conclusion I'll never know.

How can a progressive condition be stable?

 

[Ramblingrose]

Exactly. We have had no support or advice from GP or Social Services since then.

 

[canary]

How can a progressive condition be stable?

I suspect that they meant medically stable - ie they didnt need to change any medication, which is what the memory clinic is mostly interested in.

 

[Ramblingrose]

I suspect that they meant medically stable - ie they didnt need to change any medication, which is what the memory clinic is mostly interested in.

The point is that the medication wasn't keeping her stable as the dementia progressed. I don't know how they could have arrived at that conclusion. As I have said before I found the memory clinic to be a complete waste of time.

 

[canary]

The point is that the medication wasn't keeping her stable as the dementia progressed. I don't know how they could have arrived at that conclusion. As I have said before I found the memory clinic to be a complete waste of time.

Yes, I realised the point you were making, I was just pointing out the difference between being medically stable and being neurologically stable.

I think many people assume that the memory clinic will be more help than it actually is. I suspect that most memory clinics only see their input as being to make a diagnosis and to treat with medication where indicated. Mum was diagnosed, given donepezil and then discharged - I left with a fist full of leaflets.

We are left pretty much to our own devices, Im afraid. I have found most support and advice is to be found here on this forum.

 

[jennifer1967]

we had the diagnosis over the phone 12/3 before lock down. told it was vascular dementia and no tablets for it. they did referred to alz.soc. and their book of stages and left me to get on with it. the local alz. soc navigator then phoned. she has been the best help in knowing where to go, what we need, benefits, assessments and POA. in return i have shown how good the forum is and she actively encourages others to look and use them. our memory clinic is in a place where there are older peoples services and rehab and other services physio, OT are all based in the same place.

 

[Countryboy]

Dementia can progresses rapidly for some people, while others it takes years to reach an advanced stage. People with “mild dementia” may still be able to function independently, with memory lapses that have a minimal impact on daily life, such as forgetting words or where things are located and can remain stable for 25 – 30 years or more

PS I’m coming into my twenty first year still stable going strong it affects us differently but I never let it worry me

 

[Lawson58]

We struggled to get my mum to take donezipil a first. She convinced herself she was suffering with side effects but we persisted after discussions with the memory clinic. Finally after years her GP told us to let her stop taking it as it wasn't doing her any good. Alas he didn't offer an alternative. Memory Clinic discharged her about three years ago telling us she was stable? How they arrived at that conclusion I'll never know.

My husband had an averse reaction to donepezil so the geriatrician put him on to patches of rivastigamine and he has been using these for many years. It seems a pity that somebody didn't offer your mum an alternative to try. She may have found patches to be an acceptable option.

 

[Linsac]

My mum was put on Donepizil a few weeks before Christmas. Unfortunately it made her quite ill so after talking with the MH nurse, it has been stopped. The consultant has passed a message to say they will try something else in the new year.

 

[Manny2803]

Dementia can progresses rapidly for some people, while others it takes years to reach an advanced stage. People with “mild dementia” may still be able to function independently, with memory lapses that have a minimal impact on daily life, such as forgetting words or where things are located and can remain stable for 25 – 30 years or more

PS I’m coming into my twenty first year still stable going strong it affects us differently but I never let it worry me

Hey countryboy, i probably have dementia and was wondering if/when you first started having difficulties reading? Another question would be do you have difficulties finishing simple thoughts? And if so when did it start? -thanks ahead of time for responding