Long break in medication

[Louise7]

Mum has Alzheimer's and was prescribed Donepezil. This seemed to work really well at slowing down the progression and she remained on this for 4 years. It was then stopped by the hospital a year ago as a heart problem was identified and they stopped it in case it was the cause of the problems. The heart problem continued though, and Mum then had a lengthy hospital stay during which time the Donepezil was not reinstated. The hospital dementia team said they would look into having it reinstated but this didn't happen prior to Mum's discharge. Following discharge she was seen by the mental health team who said that they would wait until the heart problem was resolved before restarting any dementia medication.

The heart problem is now resolved but I have just seen a copy of the latest mental health team report and they have now discharged Mum back to the GP - without any dementia medication. The report states that they would see Mum again but only on receipt of a GP referral.

I just wondered if there comes a point when dementia medication is considered to be no longer worthwhile? I'm aware that Donepezil is not necessarily recommended for moderate/late Alzheimer's but other medication such as Memantine can be effective. It seems strange that medication that might help to slow the progression is not being considered.

 

[Cat27]

Has the heart problem been resolved by medication? If so, the donepezil may adversely affect the heart medication.

 

[Louise7]

No, not medication, a pacemaker has been fitted.

 

[Lawson58]

My husband has had heart problems for many years, including a cardiac arrest 5 years ago and was fitted with a defibrillator at the time, and has heart failure with atrial fibrillation. He was diagnosed with AD a few months later and was put on donepizil.

He tried it for a while but had some tummy problems so was switched over to rivastigimine patches. His geriatrician is well aware of his heart condition but seems to think that the risks associated with these drugs are fairly low. He is deteriorating slowly and I don't think anyone knows if it because of the medication or not. As it doesn't seem to do any harm, he will stay on them until something tells us there is no further value in continuing.

 

[Louise7]

Mum has bradycardia, which is a potential known side effect of Donepezil, so I can understand the medication being stopped for a short time to see if it was causing the heart problem. The pacemaker has now resolved the bradycardia and the hospital have not advised against re-starting any dementia medication. Mum was fine on Donepezil (her deterioration has been much quicker since it was stopped) but I understand that there can reach a point where it is felt to be ineffective. Just seems strange for dementia medication to be stopped completely without at least trying an alternative which might slow down progression.

 

[Louise7]

Update. After a bit of research I've found some NICE guidelines covering dementia medication, updated in June 2018. It covers the benefits of various medication such as Donepezil, Rivastigimine & Memantine and states that none of these slow the progression of dementia, they just control the symptoms. It's a lengthy document but has a section covering cost-effectiveness in terms of the medication being prescribed to manage symptoms such as aggression/agitation or to slow progression into a care home (and thereby reducing NHS/ social care costs).

With regards Donepezil, although recommended for early/moderate stages if it still remains effective it can be continued into later stages (possibly supplemented with memantine). In Mum's case it seems that the stopping of her Donepezil by the hospital has resulted in her no longer being given any dementia medication. They stopped it completely rather than reducing it gradually as they should have done, and on looking through the relevant hospital notes it appears that 8 days later it was decided that the GP should reconsider restarting the Donepezil. The problem is that they didn't inform the family or the GP of this! Stopping dementia medication abruptly results in a sudden increase of dementia symptoms which had previously been controlled by the medication, and unless the medication is re-started quickly the person will not return to the same levels of cognition, functionality etc. Mum was doing really well and able to speak in sentences before the Donepezil was stopped but has declined quite a lot since then and now says very little.

So it looks as though Mum's Donepezil has not been re-started and memantine or other dementia medication is not now being given due to the lengthy break without dementia medication. Also she is in a care home now so presumably spending money on medication which won't slow progression is not considered worthwhile. The NICE guidelines do not take into account quality of life. It would have been helpful for the mental health doctor to explain that rather than give us the impression that dementia medication would be restarted when the heart condition was sorted....