My Mum has been on Aricept for 12 years and we feel it has definitely slowed down the dementia progress. On a recent visit to clinic her consultant wanted to take her off it as he felt it was no longer having any effect. She is declining but very happy and settled, we were concerned and asked if she could have the dose reduced instead to enable us to monitor any effects, to which he agreed. We then went on holiday (much needed as we care for my Mum) on our return he had stopped the Aricept completely and in the last 3 weeks she has become very disorientated and agitated. After a fight he has put her back on 5mg, but I'm worried she won't get back to where she was. We are really upset as a family and wondered if anyone else had experienced this. We feel like making a complaint as he has gone against everything that we agreed........ and caused her so much distress.
Being taken off Aricept
- Thread starter Buddy
- Start date
Thank you.......yes it's very difficult because everyone gives you different advice. Our Pharmacist, who has been a great support, told me that they take people off aricept in line with the NICE Guidlines from the Dept of Health, but they are only a guideline and every patient should be looked at individually. It's very clear that aricept is slowing my Mum's dementia down, so why take her off it!! I find you have to challenge everything and it's really tiring....good luck with your Dad
I am sure everyone is different. My husband was given Aricept over 9 years ago at the very outset of him being diagnosed at the age of 62. He took it for 7 years but he had three terrible crises in a very short time and went intO an assessment unit and then into care 9 weeks later Aricept was dropped whilst he was in the assessment unit. It probably had not been working so well for over 12 months.
I have no idea what a consultant would base his/her decision on to stop a medication but if you are not happy make sure you are told how the dicission was reached. You need it clear in your own mind that the medication is as it should be.
Jay
I have no idea what a consultant would base his/her decision on to stop a medication but if you are not happy make sure you are told how the dicission was reached. You need it clear in your own mind that the medication is as it should be.
Jay
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My husband was taking Aricept for 2yrs before suffering a stroke, he was immediately taken off that medication and I found he was then less fatigued,and stopped having the stomach upsets which were probably caused by the Aricept. As we all know every patient has different reaction to all drugs.I think the Doctors should explain their decision to act against your wishes-it must be so distressing to see one's family member deteriorate like this.
When it was Aricept (and very expensive) the advise was to give it in the later stages and only for 18 months now it's out of licence and called Donepezil more people get it, does it work, who knows?
Have you considered that being away for just the length of a holiday has brought your Mum's condition into sharper focus?
My children come and visit every couple of months and they all say they can see the difference, me living with it I don't, I'm not in denial but you can be too close to something that you actually can't see it anymore.
What the doctor did was wrong, if she/he agreed the change in the treatment that should have been what happened.
K
Have you considered that being away for just the length of a holiday has brought your Mum's condition into sharper focus?
My children come and visit every couple of months and they all say they can see the difference, me living with it I don't, I'm not in denial but you can be too close to something that you actually can't see it anymore.
What the doctor did was wrong, if she/he agreed the change in the treatment that should have been what happened.
K
It is my Dad and my Mum's Carer who had noticed the difference whilst we were away, both my Mum and Dad live with us. We have a carer who helps to get her up in the morning so I can get to work, she has known her for 3 years. We have noticed more of a decline since our return, particularly at night when she is very confused. Hopefully now we have got her back on 5 mg it may help to keep her reasonably stable.
You're right though living with it means sometimes you don't notice deterioration as much. I am just annoyed that the Dr didn't do what he had agreed to do as we manage my Mum quite well and it has caused my Dad unnecessary distress, and it took me 2 weeks to get her back on it. It's sad that there always seems to be a fight to get needs met.
My Mum started 5mg of Donepezil Dec last year, and then 10 mg this April.
Mums general confusion and short term memory is worse than Dec last year, but she is less anxious and agitated.
10 mg gave her tummy upsets and a bit of nausea so it was reduced down to 5 mg in August.
Although Mum has declined since last Dec, we don't know how worse she would be if she wsn't taking it. Even for the fact that she is less anxious and agitated I would not want it her to be taken it off it all together.
Mums general confusion and short term memory is worse than Dec last year, but she is less anxious and agitated.
10 mg gave her tummy upsets and a bit of nausea so it was reduced down to 5 mg in August.
Although Mum has declined since last Dec, we don't know how worse she would be if she wsn't taking it. Even for the fact that she is less anxious and agitated I would not want it her to be taken it off it all together.
My Mum has now been back on 5mg for a week and she has definitely settled. I wouldn't say she is back to where she was before coming off the meds but her confusion has improved. It is really difficult as everyone seems to react differently, what is important for me is that the Drs and professionals LISTEN to families and don't just take folks off drug therapy just because the NICE guidelines say so. It's really hard enough as it is without all the hassle of fighting the medics!. I wish you lots of luck with your Mum
Hi my mum has just been reduced to 5mg aricept as she was on 10. Mum has been scoring below 8 on the mini mental examination and I think that is when they normally say the medication is having no affect. Our CPN said that it is also hard to tell what is a natural progression of the disease or whether it would be a deterioration due to reduced medication. Every case is different. However decisions should be discussed with carers and family before reducing medication.
