Stopping Donepizel

[LucyJordan]

My mum lives in a care home. Following a referral to the mental health team following several episodes of aggressive behaviour and anxious behaviour, the diagnosis is anxiety and depression. The revised care plan is to stop Donepizel as it is deemed to be no longer working, to prescribe an antidepressant and use some 1:1 meaningful activity input with the home’s Activity Coordinator. The CPN says that there comes a point where it stops working for memory loss and aggregates anxious or driven behaviour. This has been confirmed by the Consultant psychiatrist.

I wondered if anyone else has heard of this about Donepizel? I can’t find any references on line.

If it helps mum feel better then I’m fine with it but wonder about the wider implications.

 

[Palerider]

Hi @LucyJordan , I'm afraid I can't advise, however, in general donepezil should be stopped by reducing the dose slowly and not immediately withdrawn. There does come a point when it is no longer effective in some pwd. I found a link to this that may be of help as it simplifies what needs to be considered, you'll find contraindications (adverse effects) and action needed in the table, second page

https://www.nottsapc.nhs.uk/media/1067/dementia-donepezil-information-sheet.pdf

There are articles on this, I can post if you would like to read

 

[Bunpoots]

10mg of donepezil made my dad hyper and aggressive but his wasn't stopped - just reduced to 5mg. Also the aggressive behaviour started as soon as he was put on the higher dose - within a week or so. I always understood that stopping donepezil could lead to a sudden worsening of dementia.

 

[Crafts101]

Mum was started on Doneprezil at 5mg, but when she was upped to 10mg the side effects were not good; reduced to 5mg but not really any better and I asked for her to be taken off. She was actually worse than before she began taking it. She is now on memantine 5mg and now 10mg which is helping with the anxiety and she seems to be tolerating this much better. However she has mixed AD and VD and so its a guessing game as to how, or if, the drugs will work as there is nothing to prescribe for the VD.

 

[Beate]

We were told by the consultant that they don't stop Donepezil anymore as it could lead to a downturn in the condition so I would question their decision.

 

[Palerider]

We were told by the consultant that they don't stop Donepezil anymore as it could lead to a downturn in the condition so I would question their decision.

Indeed here is a case report in the journal Neurological Science

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3506829/

I am sorry to post this, I was waiting for a response from the originator of the thread, but there is growing evidence it should not be abruptly stopped, if at all. However, I am going on what I have read myself. Mums psychiatrist tried to stop her donepezil, but I objected as I could see no reason to at the time, and after the episode of her not taking the drug, it was obvious she was better on it, the psychiatrist agreed

 

[LucyJordan]

We were told by the consultant that they don't stop Donepezil anymore as it could lead to a downturn in the condition so I would question their decision.

Sorry I should have been clear. The recommendation is to reduce the dose gradually before stopping completely. Mum has mixed dementia.

The links are very useful. Thanks.

 

[Louise7]

We were told by the consultant that they don't stop Donepezil anymore as it could lead to a downturn in the condition so I would question their decision.

Yes, stopping donepezil certainly appeared to cause a downturn in Mum. She was on it for over 4 years and it seemed to be working really well but the hospital suddenly stopped it, rather than reducing it gradually, as they thought it may be causing a heart problem. They then decided a couple of days later that it could be re-started again but rather than re-start it themselves (or tell family) they just made a note on the discharge letter meaning that the memory team who had prescribed it were never informed by the GP. This caused an additional delay and it then got to the point where the mental health team decided not to re-start it again, and unfortunately it seems that cost may have been a factor

There's no reason why donepezil can't be given at the same time as anti-depressants so it seems strange for the OP's Mum's mental health team to decide to stop the donepezil on the grounds that it is no longer working, risking her dementia symptoms getting worse than they would be if the medication wasn't stopped. Are they going to prescribe alternative dementia medication?

 

[LucyJordan]

When people say that stopping donepezil caused a worsening of dementia symptoms what type of thing? Mental, physical, both?

 

[Louise7]

Donepezil, as with other dementia medication, helps to control the symptoms of dementia - primarily cognitive function. It's difficult to predict exactly how the stopping of donezepil will affect your Mum and will depend to some extent on her current level of cognition. If the CPN think that the donezepil has 'stopped working' then other dementia medication such as memantine is available for moderate/severe dementia symptoms and behavioural problems.

Hopefully other potential causes of the aggression and anxiety have been ruled out? My Mum suffered from severe agitation/anxiety and the CPN spent more than 6 months trying various medication, including anti-depressants, before we discovered that the behaviour was being caused by pain. The CPN were, understandably, concentrating solely on mental health reasons for the change in Mum's behaviour but it meant that other potential causes were overlooked. The medication they prescribed was given in addition to the donepezil though, they didn't stop it.

Probably best to have a conversation with the CPN/consultant with regards to whether they are intending to prescribe other dementia medication and if not their reasons for this.

You might find these fact sheets regarding changes in behaviour/aggression helpful:

https://www.alzheimers.org.uk/about-dementia/symptoms-and-diagnosis/symptoms/aggression-and-dementia


https://www.alzheimers.org.uk/about-dementia/symptoms-and-diagnosis/symptoms/behaviour-changes