There has been some downward change in short term memory and confusion about when and for how long we're going somewhere, but otherwise he functions very well. Drives, when I'm with him. He uses his iPhone, the computer and even day trades stocks. So, when his primary care physician prescribed Namenda I was surprised, as I thought it is for moderate to severe dementia. With the possible side effects, I'm not sure he should take it. What to do?
What made the doctor diagnose dementia, instead of mild cognitive impairment? What kind of testing was done?
Sorry for all the questions. Perhaps the most important question at this point, and one you should ask the doctor, is what improvement does he expect to see once this drug is working? How will you know that it is working? Can you expect improvement in short term memory? Will he be more steady on his feet? Calmer? Specifically what symptoms might the drug improve?
Namenda will not cure the dementia (or MCI) and it will not slow down its progress. It is effective at reducing certain symptoms for SOME people. The only way to know if it will work for a person is to try it. As with any drug, side effects are possible. If they occur you can discontinue the drug.
This is a trade-off situation. Do the potential benefits outweigh the side-effect risks? You need more information about what the benefits are expected to be.
My husband took Aricept from the day he was diagnosed. It was helpful, especially in eliminating hallucinations. Aricept generally works better for the type of dementia he had than the type of dementia that it was developed and approved for. He took it the entire ten years of his journey, just because he was doing very well and the doctor didn't want to "rock the boat." When he went on hospice care it was discontinued, but it became clear that it was still working and that he was more comfortable taking it, so it was added back in.
I am definitely not anti-dementia drugs. But it should be acknowledged that no drug works for everyone, no drug cures or delays dementia progression, and if a drug is not working in the present there really isn't much point in continuing with it. The generation of drugs being worked on now will be a whole new ballgame, but what is currently available has real limitations (and I don't think patients or even non-specialist doctors necessarily get this message).
This is one of the reasons before taking any medication you need to weigh the risk VS benefit.
My Husband was on Aricept for many years the Dr. added Namenda but the difficulties we/he had with each change of dose titrating on the medication was not worth it so we discontinued.
did any of the medication work? Who knows. I have no idea what his decline would have been without it.
At some point the damage is there and you wonder if it is worth it delaying the decline knowing that there is not a way to reverse the damage that has been done.
This is a sit down discussion you should have with your husband since he seems to be high functioning now. Ask him what his goals are, what he wants you to do, what he wants to do.
Take that trip that you have put off...
Get all your paperwork in order....
Sign a P.O.L.S.T. (like a DNR but more detailed)...
Talk about the possibility of placement in a Memory Care Facility. Do NOT promise that you will not do that. The man you promise to keep at home will disappear. Discuss what event will make it impossible for you to care for him. (I said I would keep my Husband at home as long as it was safe for him and for me)
These are tough discussions but best to talk about them now. I could never get my Husband to talk to me about any of this.
Years ago, my Mom primary physician gave her Namenda. After a while I noticed that Mom was weak and felt "blah" (a non-medical term which describes the feeling very well :-) I changed the time I gave it to her, so that she would go through the "blah" time during her sleep cycle. This change improved her state somewhat but not totally.
After a year of Namenda (a very expensive drug as well) I happen to run into the sales rep for that drug company coming out of the doctors office. I asked her a few questions about the drug and guess what I was told? Namenda does NOT work alone. You must partner it with Aricept for it to have any results whatsoever! And the results are not preventive, they only slow down the disease relative to the level of dementia appearing.
Further, she shared that Aricept should not be given to patients with cardiac issues, which my Mom also had. Immediately I took Mom off a drug that was not doing anything for her but diminish the moneys in her pocket. Her vitality and joy of life returned. Is it not more important to have the time you have left with quality of life?
General doctors do not know the biochemistry of all the drugs they prescribe. Do take your loved one to a gerontologist and make sure that the drugs you are offering be the right ones to have the results you expect.
Doctors can get nicely compensated by the drug companies - especially newer drugs hitting the market. There's not that much in compensation for generic drugs. I'm not saying your husband's doctor is one of the compensated - but there are plenty of doctors that do receive some financial gain.
Tell your husband's doctor your concerns and how did he/she decide on this drug for treatment. If the doctor isn't willing to take the time to explain or is dismissive, then it's time to find a new doctor - now. You need trust in any healthcare provider. You don't need hours of explanation, just a few detailed minutes of why this versus that drug or that other drug was chosen as the plan for treatment. You also need to armed with your concerns and not be afraid to stand up for what you believe is right for your loved one, i.e., if your gut tells you this isn't the drug for your husband - then find another doctor to consult.
As advocates for our ill loved ones, we also need to be researchers and be even more knowledgeable about what's appropriate and not appropriate for our loved ones.
With any pharmaceutical or any treatment, frankly, you must weigh the risks vs benefits. All drugs have side effects, it's just a matter of what you're willing to live with for quality of life and not quantity of life.
Namenda is FDA-approved for the treatment of "moderate-to-severe" dementia. In research studies, it wasn't found to be effective for mild dementia.
https://www.ncbi.nlm.nih.gov/pubmed/21482915
@sammy222, based on how you describe your husband (e.g. driving, "functions well"), it sounds like he is still in mild stage.
I don't know why the PCP prescribed it. It's actually quite common for doctors to prescribe medications without having a very good reason or scientific justification; I think it is related to the pharmaceutical advertising and also their desire to "do something" in order to feel that they are helping.
Now, if your husband was having a particular symptom that the doctor was struggling to treat, it might be reasonable to give Namenda a try, especially after trying better proven approaches. But ideally, the PCP and your husband and you would clarify which symptom you're hoping to improve, and then you'd follow that closely for several weeks, and then if no improvement -- or too many side-effects -- you'd discontinue the medication.
Incidentally, the same "give it a try and see if it helps" is recommended for the medications that are FDA-approved for mild dementia, such as Aricept, because they only seem to help some people, not all (probably not even most).
This ideal process doesn't happen very often though.
I would recommend you ask the doctor more questions about why he thinks this will help your husband. In my experience, it's well tolerated by most older adults, probably less risky than many other meds people take for years. But still, why take something unless it's helping or likely to help? Good luck!