How long on Namenda?

Daughter of a Marine

Hello, fellow travelers on this painful road. We as a family have reached the torturous decision to place my DH who is in stage 6 with mixed dementia, in memory care. He has been approved for Hospice although he is not fully incontinent, can feed himself and go to the bathroom, buy needs assistance with most ADLs. His aphasia makes him very difficult to communicate with and he is no longer in touch with reality - talks to me about pallets and freight as if I'm a fellow truck driver, believes we are in commercials and TV episodes. Hospice would like to discontinue his Namenda but it's my understanding that he should take it for life. Does anyone have any experience with this? Thank you in advance!

SDianeL

Semper Fi. My DH is a Marine now in Memory Care at a VA facility. Have you asked his Neurologist?

easy23

My husband is stage 6 and both his PCP and Geripsych were in agreement to his stop taking Namenda. I don't see any difference since he stopped a few weeks ago.

​fesk

What is hospice's reason for taking him off it? It's just my opinion, but I would not remove the Namenda. I agree with consulting the physician who prescribed it initially. My mother continues to take it at this stage.

Daughter of a Marine

Semper Fi! Thank you all for your response. Hospice typically discontinues maintenance meds other than those that are treating pain. They also wanted to discontinue his blood pressure med, but I disagreed since I don't want him to have stroke on top of everything else he's dealing with. I spoke with a gerontologist dementia specialist who was kind enough to give me her time by phone and she recommended against stopping the Namenda stating that stopping would result in significant decline. She also expressed her belief that he probably should have been placed sooner but I feel I was able to care for him. I've asked the hospice dr to keep him on Namenda at this point. He will be moving to memory care next week and I am terrified about how he'll be affected. He's very close to his family and I fear he will feel abandoned and afraid. I keep questioning this decision but I guess that's true of most of us caregivers. God bless us all.

midge333

Personally, I cannot understand wanting to prolong someone's life if they are in stage 6 or 7. If your DH qualifies for hospice he is likely in stage 7. I agree with your hospice team's recommendation. If stopping the Namenda results in a more rapid decline, I would welcome it. Who wants to spend more time in stage 7? Likewise with the blood pressure meds. If he dies of a stroke and avoids stage 7, I would view that as a win. Obviously, everyone feels differently about end of life issues. I am sorry you are in this situation.

ImMaggieMae

My DH has been on Memantine (Namenda) for a few years. I couldn’t see much difference when he was taking 5mg 2x per day, but when they increased it to 10mg 2x per day I could see big improvements. The main one was that his empathy returned. Although he’s now in late stage 6 and speaks only in whispers and not very often, the empathy still seems to be there somewhere under the confusion. He reaches for my hand when I or my sister sit next to him and he will often reach out and stroke my arm when I am helping him with ADL’s. I don’t know if this is due to the continued Namenda or not, but since I can’t see any evidence of harm, I see no reason to stop it.

He is cared for at home and seems reasonably content when we aren’t dealing with sundowning and meds sometimes take the edge off of that. Everyone with this disease seems to react so differently so I can only tell your our experiences. But I always figure if it ain’t broke, don’t fix it.

Living with someone with dementia is harder than anything I had ever imagined. But living without him will be even harder. As long as he isn’t in any apparent pain and cognizant of his surroundings to at least some extent, I will do whatever I can to help him.

terei

I never saw any difference to my mom when she refused all meds, including N about 6 months before she died.

Joe C.

Hospice made the same suggestion for my DW in MC. After some discussion with her NP I decided to leave her on Namenda while she is still ambulatory. She is generally happy and ambulatory at this point so why upset the apple cart. When she first started on Namenda 5+ years ago I read that it was only effective for 12-18 months so it is probably not doing anything at this point but not doing any harm either.

Daughter of a Marine

Thank you all! When I asked the gerontologist why she recommended leaving him on Namenda given her belief that extending life during these late stages is not what should be sought, she explained that Namenda would not extend his life, but would prevent the miserable death he could experience based on build up of chemicals in his brain. Same reasoning with blood pressure meds - if I knew a stroke would end his life, I might think differently, but so often strokes only serve to debilitate the person and I just don't want him to go through that. There is no way to know whether I'm thinking about all this correctly - I appreciate all of your input - the coming week is going to be a nightmare of emotion and sadness - I cannot imagine walking back into our home without him. I pray I'm doing the right thing.

Crkddy

I have been thru this twice - first with a new neurologist and second with hospice. In both cases the doctors wanted to stop namenda for DW. So I did it both times, and both times I noticed an immediate negative change in her behavior. So both times I restarted. DW has been on namenda now for 6+ years, and I will continue giving it until I can't get it in her any longer.

SDianeL

https://alzconnected.org/discussion/69706/how-long-on-namenda

The most difficult thing I ever had to do was place my DH (a Vietnam Vet Marine) in memory care. I had planned on caring for him as long as I was physically able. I'm 76. Unfortunately last December I was diagnosed with cancer and had to go through chemo & surgery and his only daughter lives out of state and is not physically able to care for him. Initially I placed him in a facility near my daughter's house which was very expensive. I then applied to have him moved to a VA facility. He is getting excellent care there and is much happier because the residents are almost all male veterans. I see now that I could not have cared for him and kept him safe much longer. You are making the right decision for him. Hugs.

elainechem

Hospice may require patients with terminal illnesses to stop curative treatments. Namenda is not a cure for any type of dementia. It just helps a patient remain more functional for a period of time. My hubby was on donepezil and memantine for as long as he could take them. His neurologist said that studies show that people who take these medications do better even in the late stages of the disease. They don't live longer, they just retain more functional abilities longer.

When my hubby was approved for hospice, he could still walk, feed himself, use the toilet with no accidents, and dress himself with supervision. He was approved based upon his limited use of language (stage 7 on the FAST scale) and a case of pneumonia within the previous six months.

Hospice didn't want to remove any of his meds. He was taking generic Aricept and Namenda, prostate meds, cholesterol medication, thyroid medication, prescription digestive enzymes, allergy meds… I may be forgetting something, but he was on a lot of drugs that were only designed to improve the quality of his life, but not extend it.