Alzheimers - medication or not

For issues specific to caring for someone with dementia.
Whilst I realise no 2 people with alzheimers are the same and no 2 families coping are the same, I am after tapping in to the wealth of experience by some members on the forum to see if anyone has faced what we are now.

A brief history for those that may not know it. Hubby was dx with early dementia at age 51yrs and now 6 yrs later he has been assessed as in advanced stages, also agitated dementia. He recently had a hospital stay after having had a massive seizure, when to be honest I thought we had lost him as it was that bad.

We had a home visit yesterday from both Alz and mental health team to give him a good overhaul and look at his Alz meds. He has been taking Aricept for 6 yrs but it is now over stimulating his brain. There was talk of replacing it with Mementine. This was primarily to help with his constant wandering from morn till night. He never sits for longer than a few seconds, even at meal times. He has lost almost 5 stone in weight. Dietician on board and various supplements been given. Hubbys appetite is still very good but he burns the calories with his walking. I honestly don't know how his body keeps going all day like this.

A few hours after the teams left I got a phone call to say they had gone back and discussed his case in full with his consultant. The general feeling now is Mementine will probably not be of any help and to slowly wean him off Aricept and from then on take no medication at all. They are coming back in 3 weeks to discuss it in full. In meantime I am to keep a diary to note any changes.

Is anyone here caring for someone with dementia/alzheimers that does not take any meds for it?
I am interested in the experiences of others before any final decision is made. This will be made by myself, our 2 daughters and my brother in law after taking all points on board. I have included them in the process from the very beginning.

Many thanks in advance.

x x
Hi Rosemary

Sorry to hear this :(

Mum was on Aricept which worked quite well for a while, but after a while it ceased to have any noticeable effect and was stopped. At one point her consultant mentioned a drug that is used for epilepsy (can't now remember which one) which might help to keep her calmer, but one of the side effects was a tendency for it to act as a 'chemical cosh' and we decided not to go down that route.

I hope that your OH's medical team can come up with an alternative, but whatever they suggest I feel sure that you and your girls will make the right decision in the best interests of the husband/father that you know so well.
So sorry to hear that, Rosemary. Very tough on you all.

Like Sue, my mum was on Aricept but it affected her stomach and other meds so she was on half a tablet. It was stopped by the consultant once the dementia became more advanced, as he felt the side-effects outweighed the benefits. He felt it only useful in the early stages to slow down the progression.

For most of the time since diagnosis (9 years) she took no tablets for dementia.

As you say, no two sufferers are the same but I hope you can come to a decision that is right for you and your family.

Anne x
Thanks for your replies ladies.

From tonight his Aricept has been reduced from 10mg to 5 mg for next 7 nights. Then he will not take anything else. The risks of a reaction are there if he takes a new med or not, so after talking over with our 2 daughters and bro in law, we all agreed with this course of action.

He will be closely monitored for any possible changes. His weight loss is slowing down and hopefully if he stops the constant wandering, he may even put a little on.

Will keep you posted.

As an aside, the new care package I negotiated is so far working well. We have been primarily allocated a male staff member and it seems to have picked hubbys moods up a little. As he worked in a male environment all his life I have said for ages he was missing male company. I actually feel better in myself too. Yesterday I had no where to actually go during our time slot so I ended up taking a book and parking up at the riverside. After being housebound with hubby for so long now I had forgotten what it was like to sit and do nothing. I did feel guilty at 1st but if this enables me to recharge my batteries to keep him at home as long as possible, bring it on. Just waiting on the results of our financial assessment :ohmy: :o ;)

x x
You certainly shouldn't feel guilty, Rosemary.

(((HUGS))) Rosemary.
Remember, sad not guilty! I have to remember it too.
Sounds very good, Rosemary. Yes, remember what we tell everyone else. Put your own seatbelt on before tending to others! Sadly, guilt comes as part of the package with caring ...