Hello, I am the primary carer for my mum who was diagnosed with Alzheimer's over six years ago. Since being diagnosed she has refused to accept that she has any problems with her memory. Recently, her paranoia has forced my other two siblings to relinquish their caring responsibilities as they can no longer deal with mum, so the sole responsibility is now mine.... She was initially prescribed Donepezil but switched to Memantine. During lockdown she collected her prescription from the chemist, saw that she had been prescribed Memantine and asked the chemist what the tablets were for. Once she was told, she refused to take them and told the chemist that it was her sons that were forcing her to take the medication and there was nothing wrong with her memory. As a consequence of these constant refusals, over a period of time, mum was removed from the memory clinic register. I recently contacted the memory clinic and mums GP after finding out that no assessment has been carried out on mum for almost two years. After a GP referral, the memory clinic told me that it was protocol to remove patients if they refused to take medication. I explained the situation and managed to get a home assessment booked, with a view to getting mum back onto the memory clinic register and taking Donepezil again. I find it hard to accept that the memory clinic protocol is to remove an Alzheimer's patient from their register for refusing to take medication. It's not like mums condition has been cured!!
Dementia Dilemma
- Thread starter Randomfifty4
- Start date
Welcome to the forum @Randomfifty4.
I’m so sorry to read about the problems you’re facing. I hope you can get your mum some help again. I know you’ll get lots of understanding and support here.
I’m so sorry to read about the problems you’re facing. I hope you can get your mum some help again. I know you’ll get lots of understanding and support here.
The problem here is one of capacity. You can't force someone to take meds and if they are deemed to have enough capacity to say no, that's that.
I agree it seems ridiculous, as not accepting anything is wrong (anosognosia) is very much a symptom of dementia. However, while she still has capacity, you're pretty stuck. A person is allowed to make their own decisions - even really bad ones - until they are declared to have lost capacity. At what point this happens is very much subject to opinion (depends who wants to know and what for!) I'm afraid.
I agree it seems ridiculous, as not accepting anything is wrong (anosognosia) is very much a symptom of dementia. However, while she still has capacity, you're pretty stuck. A person is allowed to make their own decisions - even really bad ones - until they are declared to have lost capacity. At what point this happens is very much subject to opinion (depends who wants to know and what for!) I'm afraid.
In my area it is memory clinic protocol to make the diagnosis, start a person with Alzheimers on medication, see them again to check they are OK on it and then discharge them into the care of the GP for repeat prescriptions.
They saw their function in terms of diagnosis getting them onto medication, but as there is no medical treatment to cure, halt, or even slow down the actual condition they saw no reason to continue seeing the person with dementia. Support and guidance were seen as social issues and not part of their remit...
So, once discharged into the care of the GP, who ensures that annual assessments are carried out?
Hi @Randomfifty4
Welcome from me too
Unfortunately there won't usually be any regular assessments ... if the person or their carers have a concern it's down to them to contact the GP and/or Social Services
You may find Admiral Nurses helpful, as they are there to support carers
www.dementiauk.org
And
www.carersuk.org
And keep posting here as members will share their experience which is invaluable
Welcome from me too
Unfortunately there won't usually be any regular assessments ... if the person or their carers have a concern it's down to them to contact the GP and/or Social Services
You may find Admiral Nurses helpful, as they are there to support carers
What is an Admiral Nurse and how can they help?
An Admiral Nurse is a dementia specialist nurse that provides life-changing care for families affected by all forms of dementia.
www.dementiauk.org
And
Carers UK homepage
We’re here for unpaid carers with expert information, advice & support and also campaign to make life better for carers.
www.carersuk.org
And keep posting here as members will share their experience which is invaluable
No one bothered with my mum following diagnosis because I'd already had to move her to a care home so 'all sorted' as far as anyone was concerned. Once there, she was registered with the local GP surgery. They had a policy of visiting all dementia patients in the home once a year. I arrived for a visit one time just after the GP had seen mum - I had no idea it was going to happen. His comment: 'She's getting worse, isn't she?' Well, no ****, Sherlock.
The point is, what can be done, apart from maybe treating some symptoms? (Mum wasn't given any drugs.) I have to say though, that this doctor actually asked me, 'But how are YOU?' The first time any doctor had shown the slightest concern about my wellbeing and I burst into tears. He was really nice (but couldn't help my mother.)
As others have said, no one is going to rush forward with assessments . My mother in law saw the memory clinic twice, but as she had no medication for dementia she was discharged from the memory clinic back to the GP. She never had any further assessments.
As others have said - once mum was discharged she didnt have any further assessments.
TBH - she would have found them too difficult to get to and too upsetting to do, so I wasnt sorry.
If mum had required medication for aggression, psychosis etc (she never had any) then the GP would have referred her to the Community Psychiatric Team, who would have stabilised her with medication and then referred her back to the GP.
