Hello Charlie
My husband, who is 60 and has had Alzheimer's for some 7 -8 years was started on Aricept in May 2002 and quickly showed some improvement in communication (expressing himself and understanding what was said to him). This was confirmed by the specialist medication nurse when she visited us after 3 months and did the MMSE test. There wasn't any significant change in any other functioning.
His condition remained pretty much unchanged, just the usual gradual deterioration, for about 7 to 8 months (until early this year) when there seemed to be a change for the worse. In July his consultant discussed stopping the Aricept, as one of my husband's problems was intermittent but frequent insight into his condition, which caused distress, depression and occasional rages. Both the consultant and I felt that it was possible that keeping my husband on Aricept was just about maintaining him at this level of awareness and it might be kinder to take him off it, but it was really left up to me to decide. I agreed with the consultant that it was a very difficult ethical decision, despite the fact that his MMSE score had fallen significantly and it looked as though Aricept wasn't really benefitting my husband any more.
It was decided to leave the decision for a while. However, through August there was a pronounced deterioration, with more confusion and agitation, very disturbed sleep patterns, violent behaviour when he couldn't get out of the house (he's a very committed wanderer with the escape skills of Houdini!) and deep depressive, almost catatonic, states. Towards the end of August it was decided (with my agreement) to take him off Aricept as it really didn't seem to be helping at all. Two weeks later, after a series of very disturbed nights, lots of anger and a violent episode which frightened me, I couldn't take it any more and called his CPN (who is always very supportive). It is difficult to say whether this was related to coming off the Aricept - it just felt to me as though it was a continuation and worsening of his most recent deterioration.
The CPN got the Consultant round to our home first thing next morning prepared to admit my husband to a geriatric dementia assessment ward some 20 miles away (there is no appropriate facility in our area). The CPN had already booked a bed and they were prepared to admit him under Section 3, but in the event he agreed to be admitted. He was there for 2 weeks
while they took blood tests to establish if there was any other underlying problem e.g. infection, which can make the symptoms worse. They also tried a different range of medications.
After two weeks he was allowed home, with the proviso that if things were no better he could go back, but so far (one month on) things are just about copeable with, although the confusion, agitation etc are worse if anything, the new sleeping tablets mean that I am getting a few hours sleep most nights, and I have a sedative which I can give him when he gets really agitated (often a precursor to angry and violent behaviour). Some days I don't need to give it, some days I do.
One of the blood tests taken in hospital indicates that there may in fact be another underlying problem which could have triggered the downturn in my husband's condition during August and September, and we are waiting for an appointment with another hospital consultant to get this checked out.
To summarise: although I can't be 100% definite about this, I do feel that the benefits of Aricept started "wearing off" after about 9 to 10 months and were not perceptible after 15 months. Although there has been quite a marked deterioration in the last 2 to 3 months, I am pretty sure it started before stopping Aricept.
One thing more - my husband's consultant said that if he came off Aricept and it made things much worse, he could go back on it. I don't think there is anything to be gained by this, as at last my husband is not so acutely aware that there is something horribly wrong with him, and although he gets angry because he can't go out, it is more like a tantrum which blows over with a little help (usually by distracting him), whereas before he would have been in a state of depression all day.
This is a heartbreaking disease - my husband was the kindest and most thoughful of men and would have hated to think he could behave as he does now.
Sorry, I've probably gone into more detail than you needed or wanted, but hope that some of it will be useful to feed into any thoughts you are having about Aricept and whether it is useful to continue. Perhaps you could ask the consultant whether it would be possible to restart it if there is a change for the worse if it is stopped? This may depend on the MMSE score of course.
Kind regards
Ruthie