Here I go again , all I seemed to do is ask questions. But.... We saw the Dr. today and he seems to think we may need to stop the Aricept and the Namenda. My lo started Hospice this week although he still up and about he still not eating ( has the swallowing problem ) the Dr seems to think he's late 6 or 7. I know I've read somewhere that is what they do after being on the medicine for a number of years . But I was also concerned it might make him more agitated or confusedm Anyone got a similar problem or experience????
I just called in hospice last week. They have been great so far. My husband is probably level 6+ They also recommended I take him off these two drugs. I never did see any improvement with the Namenda, so I am weaning him off this one now, They have supplied me with a little kit of emergency drugs in case I have a problem.
This does not sound like it would be a fun thing to do. I can't tell if Exelon and Nemanda are working or not. DH denies he has a problem. Forgets more every day. Doesn't eat unless I fix it for him. Sleeps like a baby. Easy to get along with. I really have no complaints but I know it's just a matter of time and he will be considerably worse. I just hataea to think about it. Makes my heart and soul ache.
nanapapa, why does the doctor think you "may need" to stop the meds? Does he perhaps think they're not allowed if your husband is on hospice?
Some people do decide to stop these meds in the later stages, assuming that they are no longer "working". Sometimes the patient gets a bit better -- it appears they'd developed an adverse reaction somewhere along the way. Sometimes nothing changes when the meds are stopped.
Sometimes the patient goes into a very steep decline, because the meds were actually working -- it's just hard to tell they're working in late-stage patients. When a patient reacts by going into a steep decline, it does not help to put the patient back on the meds -- they do not go back to where they were before.
Both Aricept and Namenda have been approved for treating severe AD. In clinical trials, when patients were first put on one or the other (or both) when they were already in moderate or severe stages, they did better than patients who were not given the meds.
There is a lot of confusion over how long they work. The first clinical trials only lasted six months, and so many people (doctors included) think they only work for six months. Later trials that lasted 18 to 24 months showed that they continued working. Very few clinical trials have looked at time spans longer than that, because studies like that are way too expensive to conduct very many of them. I have seen a couple of them, however, as well as retroactive studies, and all of them concluded that, ON AVERAGE, they were still working after several years, and were helping late-stage patients. But that's on average. Every patient is different.
Both drugs have been shown to help prevent negative behavioral symptoms (agitation, aggression, etc.) in many patients.
Bottom line, if it were my husband, unless he developed serious behavioral symptoms that might be attributable to side effects from the meds, I would keep him on them.
I've contacte my husband's family doctor about taking over all of his problems. He has agreed. Specialists only if something special comes up. He is considering taking my husband off some medications, but NOT the dementia medications. At this point I'm not sure which ones and in what order. I'd be surprised if Hospice wouldn't let you keep a patient on these medications because they don't cure anything. They just improve quality of life.
When Hospice came for my Mom last year they did not ask me to discontinue any meds. She was not on dementia meds but blood pressure, Zocor, Heart meds, pacemaker, synthroid asprin.. I kept her on all except the Zocor but, I had to pay for them. They did not provide any of those because the Doctor had signed her on as "Old age decline and dementia". Had he signed her including bp and heart, I think they might have provided them or something equivilant. They had a list of their qualifying drugs.
I am quite surprised that your doctor agreed to it. Our doctor advised against it, wanting to keep her on the meds until the very last moment. She was entering stage 7.
We took Andrea off the meds, realizing that there was no purpose. All I can tell you is that she went into a steep decline, did the failure to thrive, and died 7 months later.
I don't regret the decision, whether it was a coincidence or not.
Queen, I also have a comfort pack from hospice. We haven't used it yet but was sorly tempted yesterday. MY husband is on oxygen and for some reason he was agitatd over the hoses. he would gout and take them off and then come back in without. he could not sit still pacing and following me everywhere like I was going to leave him ,also scratching at his arms extremely nervous.... We haven't taken him off any of his meds yet..... Going to talk to Hsoice nurse on Monday....