After Donezepil

[jackie4]

If Donepezil seems to have stopped working after two years use, is a referral back to the Memory Clinic likely to be of any benefit?

Mum is 86 and was diagnosed with Alzheimers and Vascular Dementia two years ago.
In the last four to six weeks Mum has got worse with behaviour and mood changes, ability to do things etc.
Mum was prescribed Donepezil by the Memory Clinic, started on 5mg, increased to 10mg, but due to bad dreams went back to 5mg which was fine.
We have had no contact with the Memory Clinic since then, but after a recent normal blood test, the GP says that a referral back may be made.
Mum didn't like the original assessment process at all, so I am wondering if it will be worth putting her through any stress again.
Thanks

 

[Louise7]

Hello @jackie4 There may be other medication that can help with your mum's behaviour and mood swings so it's definitely worth a referral back to the memory clinic. When my mum's Donezepil was stopped by the hospital after about 4 years or so the GP referred back to the memory clinic but she wasn't put through the initial assessment process again, and there were no tests, just various medication prescribed to see what would help best. They don't just prescribe standard 'dementia' medication - they can also prescribe medication such as anti-depressants to help with mood and behaviour issues - so it's worth a try to see if they can help your mum. Depression is quite common in those with dementia and it might be that the Donezepil is still working for your mum but she needs something extra on top. Hope that you find something that can help, although bear in mind that in some areas there are quite long waiting lists of the memory clinic so it may be a little while before your mum gets an appointment.

 

[jackie4]

Hello Louise7
Mum is on Mirtazapine for her anxiety caused by the dementia , Lorazapam for when she is worse but she refuses to take it when she would benefit from it and also other meds including painkillers for hip and back trouble.
I was thinking of the waiting time for a referral and was wondering about pushing the GP to try something else instead or while waiting for the referral. Trouble as well is that any slight adverse reaction, then Mum refuses to take anymore.

 

[Bunpoots]

Hi @jackie4 when my dad was referred back to the memory clinic a MH nurse phoned me and asked if it was best for dad to go to the clinic or have a home visit. We opted for the home visit.

I’d assumed we’d have to go to the hospital - which would have been a nightmare - so was pleasantly surprised to be offered a choice when they got in touch.

 

[Agzy]

Hello @jackie4 There may be other medication that can help with your mum's behaviour and mood swings so it's definitely worth a referral back to the memory clinic. When my mum's Donezepil was stopped by the hospital after about 4 years or so the GP referred back to the memory clinic but she wasn't put through the initial assessment process again, and there were no tests, just various medication prescribed to see what would help best. They don't just prescribe standard 'dementia' medication - they can also prescribe medication such as anti-depressants to help with mood and behaviour issues - so it's worth a try to see if they can help your mum. Depression is quite common in those with dementia and it might be that the Donezepil is still working for your mum but she needs something extra on top. Hope that you find something that can help, although bear in mind that in some areas there are quite long waiting lists of the memory clinic so it may be a little while before your mum gets an appointment.

??

 

[jackie4]

Mum has been referred back to the Memory Clinic this morning. The GP thinks it might be 6 - 8 weeks for an appointment.
Hi Bunpoots Mums original memory assessment was carried out at home in August 2020 due to Covid but the assessment itself was stressful for her. Was your Dad on Donepezil and was he prescribed anything else instead or as well as.

 

[Bunpoots]

Hi @jackie4

My dad was on Donepezil, but only the 5mg dose as 10mg made him unmanageable. He was never prescribed anything else as we had no problems with aggression or moodiness or anything like that. TBH nothing was suggested by the MH nurse except that he needed more care at home and she did push SS for this.

It’s probably worthwhile if your mum’s behaviour is becoming a problem as there might be something she could be prescribed. I’ve seen other members talk about mementine being used after Donepezil but my dad wasn’t offered that and didn’t need anything to calm him down. He spent most of the day sleeping for his last few months.

 

[goose64]

I'm probably preaching to the gallery here ,but has the change been sudden? If so get the GP to test for a uti, my mother-in-law changed, over the course of a few days, from a gentle loving woman to an aggressive one. In turn this led to a fall and visit to hospital where they diagnosed a uti and gave her a,single dose antibiotic and today she's not so aggressive. I'm allowed to stay with her though as I'm her friend as long as I keep quiet.

 

[imthedaughter]

My dad gets his meds tweaked at the request of the care home with no assessments - he has a care plans etc all documented and a GP comes round regularly from the drs next door so I guess they feel it's pretty well monitored. It's worth finding out what can be done as meds can help - Dad's antidepressant really helped, for example, even though it's not a 'dementia drug'.

 

[jackie4]

Hi @jackie4

My dad was on Donepezil, but only the 5mg dose as 10mg made him unmanageable. He was never prescribed anything else as we had no problems with aggression or moodiness or anything like that. TBH nothing was suggested by the MH nurse except that he needed more care at home and she did push SS for this.

It’s probably worthwhile if your mum’s behaviour is becoming a problem as there might be something she could be prescribed. I’ve seen other members talk about mementine being used after Donepezil but my dad wasn’t offered that and didn’t need anything to calm him down. He spent most of the day sleeping for his last few months.

Mum is on 5mg Donepezil too as 10mg made her dreams a bit too frightening for her. I know that behaviour etc can go up and down, but today has been much better.
The last couple of months have been more stressful and unsettling for Mum as our dog has had to have a couple of operations. The dog is now almost healed so we'll see if she is more settled while we are waiting for her referral appointment to come through.
I didn't mention it before, but Mums speech has been greatly affected by the Vascular Dementia I think, so much so now that it is very difficult to understand the vast majority of what she says now. When I can't understand what she is asking or saying, Mum can get quite angry and frustrated as she thinks that I am lying when I say that I don't understand when she is waiting for a response or answer.
We try all the obvious things, writing things down, getting Mum to show me or take me to places in the house that might give me a clue as to what she is saying etc., but sometimes I still don't understand.

 

[jackie4]

I'm probably preaching to the gallery here ,but has the change been sudden? If so get the GP to test for a uti, my mother-in-law changed, over the course of a few days, from a gentle loving woman to an aggressive one. In turn this led to a fall and visit to hospital where they diagnosed a uti and gave her a,single dose antibiotic and today she's not so aggressive. I'm allowed to stay with her though as I'm her friend as long as I keep quiet.

The deterioration has been over a few weeks with sudden swings of behaviour, mood changes and then back to "normal", though I know it is a downward spiral. Today has been quite good.
I did do a home urine dip test which came back normal. If the swings continue then I will take a sample to the doctors for test

Mum is on 5mg Donepezil too as 10mg made her dreams a bit too frightening for her. I know that behaviour etc can go up and down, but today has been much better.
The last couple of months have been more stressful and unsettling for Mum as our dog has had to have a couple of operations. The dog is now almost healed so we'll see if she is more settled while we are waiting for her referral appointment to come through.
I didn't mention it before, but Mums speech has been greatly affected by the Vascular Dementia I think, so much so now that it is very difficult to understand the vast majority of what she says now. When I can't understand what she is asking or saying, Mum can get quite angry and frustrated as she thinks that I am lying when I say that I don't understand when she is waiting for a response or answer.
We try all the obvious things, writing things down, getting Mum to show me or take me to places in the house that might give me a clue as to what she is saying etc., but sometimes I still don't understand.

My dad gets his meds tweaked at the request of the care home with no assessments - he has a care plans etc all documented and a GP comes round regularly from the drs next door so I guess they feel it's pretty well monitored. It's worth finding out what can be done as meds can help - Dad's antidepressant really helped, for example, even though it's not a 'dementia' drug.

The GPs don't seem to monitor the dementia as such rather treat any problems on a stand alone basis if that makes sense. I think the referral back to the Memory Clinic is to assess the dementia.
One of the doctors said that they couldn't understand why there was a rush to diagnose dementia as they couldn't do anything about it.

 

[Violet Jane]

@jackie4, that’s so wrong of that doctor to say that. There is medication that can help plus it’s easier to get benefits and access services if there is a diagnosis. Some day centres require a diagnosis and, of course, family (and, sometimes, the person with symptoms) wants a diagnosis so that they can make sense of what is going on.

 

[jackie4]

@jackie4, that’s so wrong of that doctor to say that. There is medication that can help plus it’s easier to get benefits and access services if there is a diagnosis. Some day centres require a diagnosis and, of course, family (and, sometimes, the person with symptoms) wants a diagnosis so that they can make sense of what is going on.

I agree and the diagnosis certainly helped to explain a few things and how better to deal with them.

 

[Agzy]

@jackie4, that’s so wrong of that doctor to say that. There is medication that can help plus it’s easier to get benefits and access services if there is a diagnosis. Some day centres require a diagnosis and, of course, family (and, sometimes, the person with symptoms) wants a diagnosis so that they can make sense of what is going on.

??

 

[Jaded'n'faded]

One of the doctors said that they couldn't understand why there was a rush to diagnose dementia as they couldn't do anything about it.

That seems to sum up the attitude of the medical profession, doesn't it? The Memory Clinic diagnoses then sends you away to get on with it. The GP (effectively) says, 'Yes, I know he/she has dementia. What do you expect me to do?'

Everyone seems to say, 'It's a family problem really - you'll just have to deal with it.'