Medical Forum / Diseases and Disorders / Alzheimer's / April 2004
Memantime Experience
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Bob Bendick - 30 Mar 2004 16:54 GMT I'm new to this board. What I've read here has been helpful and interesting. I'd like to first give some background about my family's involvement with Alzheimer's, then our experience with Memantine and, finally, some specific questions about your experiences with Memantine.
My mother, 89, has been diagnosed with Alzheimer's and is somewhere between the moderate and severe stages of the disease. She lives with my father, 91, who is a 24/7 caregiver, in good health and the object of our family's concern. They live in independent living in a large, beautiful retirement facility. My mother sometimes thinks her husband is her father, sometimes thinks she has an infant child, thinks her long since deceased parents are still alive, still thinks she is on vacation and will be going home soon, has a memory span of between 15 seconds and 5 minutes, etc., etc.
Our experience with Memantine has been mixed. My mother has been on Aricept for around 3 years and continues taking 10mg daily. Their doctor, at the retirement facility, prescribed Memantine back around mid January, after my father gave the doctor my printout on Memantine from WebMD. (The Doctor had not heard of Memantine, which I thought was strange, but that is a another story.) They followed the well devised instructions and slowly ramped up the dosage from 5mg to 20mg daily over a period of about 4 weeks.
We have noticed that my mother is more aware but we (my Brother and Sister) are not sure if that is a good thing, especially for my father. The increased awareness has made her more aware that something is wrong with her, she questions my father more and is generally more confused about everything. It is making life more difficult for my 91 year old father/caregiver.
Starting about about 2 weeks ago (8 weeks after starting Memantine) she has had occasional bouts of diarrhea (about 3 times a week ) that she can not control, which is very physically demanding on my father. Last week the Doctor said to reduce the Memantine from 20 to 10mg/daily, but, from what I've read, Memantine is more likely to cause constipation than diarrhea. Yesterday was the first time she ever had major accidents with urination. I'm not sure if the sudden incontinence is related to the Memantine or something else, such as the natural progression of the disease.
My question to you. Has anyone else observed an increase in diarrhea or incontinence after starting Memantine? I know that some here have written about an increase in confusion which very closely parallels our experience, so I know that is not abnormal.
Our objective in starting Memantine was to make things easier for my father, especially since Memantine was supposed to prolong the time the patient could take care of them self, i.e. toileting, etc. So far our experience has not been positive. I would like to have my mother continue on Memantine for 26-28 weeks and match the length of the studies, thereby hoping to see the full positive effect of the drug. However, the increased mental and physical hardship on my father may cause us to stop giving the drug to my mother.
Sorry about the length of this post. I hope the details are more relevant than boring.
Bob
Beth - 30 Mar 2004 17:20 GMT Bob, Your described experience with Memantine parallels what is happening at my MILs ALF. I had a discussion with the director last week (I'm in healthcare and we regularly chitchat) and she reports that several of the residents are coming back from their MD appts with memantine added to their meds- usually at request of family, but sometimes not. She's finding that at 4 days, behaviors change with more agitation, anxiety and physical acting out. This is requiring more staff interventions including more intense efforts to limit assault-type behavior. She was planning to consult with the medical director about developing a policy for managing this situation-where the family gets informed that additional care/charges might be needed with the use of this drug. So far, she hasn't seen that the use improves their function in that specific environment. She suspects that the increased awareness causes these behaviors-and it may not be in the resident's best interests at the stage they're in. Keeping someone at home is likely a different set of issues as the patient may be functioning at a higher level.
I have no suggestions, but considering the effect on your Dad is certainly a valid consideration.
Beth
Gwen Love - 31 Mar 2004 00:53 GMT Bob, so glad you found us and hope we will be able to be very helpful. I can't help with the Memantime issue since it wasn't available when my husband was alive. I know you must be worried about your dad; hope you can work out something to help him. Gwen
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| I'm new to this board. What I've read here has been helpful and | interesting. I'd like to first give some background about my family's [quoted text clipped - 56 lines] | | Bob Jennie - 01 Apr 2004 07:02 GMT Bob,
My mother is in a similar situation to yours. She took Aricept for about 3 years and is still on it. Is now taking memantine, but not for quite as long as your mother.
My mother has reached the stage of incontinence (both urinary and fecal) within the past month. When you say your mother has bouts of diarrhea, do you say that because she claims she had an accident because it came on so fast (therefore, it's diarrhea), or because it actually looks like diarrhea? (sorry to get graphic...)
I know that my mother realized that she was becoming incontinent and was upset because she felt that something was wrong. We talked about it and I told her it was OK, we all understood she couldn't help it, and no one was blaming her. Somehow, that seemed to ease her mind.
It is amazing how fast she moved into the incontinent stage. Several "stages" have happened to my mother in the past 3-4 months that came on very fast, and the sudden onset really does make it hard to tell what the cause was (she was trying some new medications, memantine among them, and some new behaviors coincided with new medications). But looking at things over the past 14 months, she has continually been declining fairly rapidly, and when you look at the big picture, it put the new behaviors in context.
We have not yet really noticed an improvement in mental functioning due to the memantine. However, my mother has just started to reengage in some behaviors that had disappeared: wanting to "go home", moving furniture and things around the house,e tc.. Like your mother's situation, this may be an unfortunate effect of increased awareness.
Good luck with your situation.
Jennie
> I'm new to this board. What I've read here has been helpful and > interesting. I'd like to first give some background about my family's [quoted text clipped - 56 lines] > > Bob Bob Bendick - 04 Apr 2004 22:07 GMT Beth, Gwen and Jennie, thank you for your replies. I appreciate them.
Beth, it is interesting to hear that the medical community is observing some combative type behavior resulting from Memantine. I guess the value of Memantine really depends on the individual stage and situation.
Gwen, thanks for welcoming me to the board. I hope your husband went quickly and painlessly, as I hope my mother will.
Jennie, it's frightening to hear how quickly you mother moved to the incontinence stage. My father finally talked to the Doctor, who said that there is a lot of diarrhea going around due to some virus. So hopefully, that's all it is. The Doctor also said to stop the Memantine and Aricept for about 3 day. The Diarrhea seems to have slowed but not stopped. (And, yes, to your excellent question, it really is diarrhea, graphically speaking.:)
I don't know if we will continue with the Memantine. We'll see what the Doctor says. The Doctor did tell my father that Memantine should not cause diarrhea. I'm encouraged the Doctor seems to have done some research on Memantine.
Thanks again to all of you,
Bob
Mary Morken - 06 Apr 2004 23:19 GMT My husband (age 60) has been on memantine 12 weeks. At first he suddenly could make decisions again and did so without my knowing it, which gave me some challenges but I was so thrilled to see him able to plan something to do that I adjusted quickly. However, I did finally ask him to tell me when he planned something!
He was also able to talk about his own memory loss a bit which he rarely has done over the last 3 years. And the other day he said, "We aren't working very well together right now." He's not made that kind of statement in a very long time.
The greatest help I see memantine giving is in his being able to make decisions and take initiatives. He is still in early stages and very functional.
I read a study of memantine that showed that it gives improvement for 12 weeks and then they start a slower decline than before, and get back to their baseline of when they started the study at about 6 months. So, I'm trying something: I've only given him 10 mg qd and I'm going to increase up to 20 mg over the next 2-3 weeks and see if I can keep him on the improving scale. I don't know if it will work, but since he is still mild I thought using only half a dose might be smart. He has also been on Reminyl for 3 years since the day it was on the market. I saw improvement with that too. And I know the antidepressant he is on really helps him control his emotions and not have "catastrophic reactions" too.
Hope this helps. Caregivers in an institution might find patients easier to care for if they didn't take initiatives, if they were less self-aware. I say, let's give the caregivers a challenge for the sake of improved functioning in their patients. -Mary Morken mtdaily@aol.com
Darryl - 06 Apr 2004 23:39 GMT I'm glad to hear of your success with memantine.
>I read a study of memantine that showed that it gives improvement for >12 weeks and then they start a slower decline than before, and get >back to their baseline of when they started the study at about 6 I didn't realize that any were completed (i.e., at the time of the JAMA paper, the other long-term studies, I thought, were on-going). Would you happen to have the reference?
>months. So, I'm trying something: I've only given him 10 mg qd and >I'm going to increase up to 20 mg over the next 2-3 weeks and see if I When I first read this sentence, I saw qid as opposed to qd. Yikes! (quotid or qd = every day for anyone who's interested). Are you titrating up from 5 mg?
>can keep him on the improving scale. I don't know if it will work, >but since he is still mild I thought using only half a dose might be >smart. He has also been on Reminyl for 3 years since the day it was Assuming memantine lessens the havoc wreaked on the acetylcholinergic nervous system, the sooner the maximum dose is reached, the better IMO.
Darryl.
Mary K Farrell - 07 Apr 2004 03:47 GMT Hey, Darryl: How come you're so doggone smart?! My understanding of Memantine is the same as yours. Also, yes, the sooner you can titer up to the full dose, the better. By the way, I did purchase another supply of Memantine/Axura from the pharmacy in Zurich. Guess what? Within 5 days after George started taking that new supply, his mental capacity improved. Last MMSE was back up to 24. Even the neurologist was surprised by that! We're now waiting to see if the pharmacy in Zurich can decypher what may be the difference between the two pills. Hopefully, we'll have a true answer some day soon. Soon as I hear anything, I'll let you know! Mary K
> I'm glad to hear of your success with memantine. > > >I read a study of memantine that showed that it gives improvement for > >12 weeks and then they start a slower decline than before, and get > >back to their baseline of when they started the study at about 6 > > I didn't realize that any were completed (i.e., at the time of the > JAMA paper, the other long-term studies, I thought, were on-going). > Would you happen to have the reference? > > >months. So, I'm trying something: I've only given him 10 mg qd and > >I'm going to increase up to 20 mg over the next 2-3 weeks and see if I > > When I first read this sentence, I saw qid as opposed to qd. Yikes! > (quotid or qd = every day for anyone who's interested). Are you > titrating up from 5 mg? > > >can keep him on the improving scale. I don't know if it will work, > >but since he is still mild I thought using only half a dose might be > >smart. He has also been on Reminyl for 3 years since the day it was > > Assuming memantine lessens the havoc wreaked on the acetylcholinergic > nervous system, the sooner the maximum dose is reached, the better > IMO. > > Darryl.
Beth - 07 Apr 2004 00:37 GMT >I say, let's give the caregivers a challenge for the sake of improved functioning in their patients<
Mary, As I previously posted, Memantine is not making it easier on the caregivers in my MILs dementia-ALF. First of all, it's pretty much a given that they're more involved and further along if they're placed- thus "improved functioning" can take them "back" to agitated, assaultive behaviors requiring more surveillance to protect both themselves and other residents. I think the issues for home caregivers can be different than institutional caregivers in this area. When the" improved functioning" in an otherwise controlled environment results in increased agitation, lashing out, and being obviously distressed-caregivers "meeting a challenge" cannot necessarily calm them down or placate them. At least that's what I've been observing.....
I'm very happy Memantine has helped your husband. The right medication at the right time is a godsend, isn't it? Unfortunately, it doesn't work the same for everyone.
Beth
Evelyn Ruut - 07 Apr 2004 12:07 GMT > >I say, let's give the caregivers a challenge for the sake of improved > functioning in their patients< [quoted text clipped - 17 lines] > > Beth I am in agreement, Beth. All the advancing stages of Alzheimers are not necessarily on a grade of better/worse than others, and increased cognition CAN mean putting the person in a "worse" state of mind.
Regards, Evelyn
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