Medications for Dementia

Last updated: December 03, 2009

The daughter of a patient recently asked me a question about Alzheimer's drugs that families often bring up. She wondered if the medications were still helping her father, who had been taking them for years and was now entering late-stage disease. "I feel guilty to even ask this," she told me. "But all the many drugs he takes are so expensive, and I'm not sure these dementia drugs are helping. How can I tell if he still really needs them?" When a reader posed a similar question last summer, many fellow caregivers quickly chimed in with their stories. It's so common for interest in modern medications to swirl together with doubts about effectiveness, worries about money, and maybe even guilt for even asking the questions. This can be especially true when a dementia such as Alzheimer's disease has gotten pretty advanced.

I was glad this daughter brought her concern to my attention. The four points below are what we discussed. It's what I encourage all families in my practice to consider before continuing cholinesterase inhibitors, such as donepezil (Aricept) and memantine (Namenda):

Four things to consider before continuing Alzheimer's medications

1. These drugs have been shown to slow down the decline caused by dementias such as Alzheimer's, but only by a little bit. In other words, we think these drugs work, but it's unrealistic to expect that they will make a huge difference. In studies of people with dementia (which are mostly funded by the drug makers), at the end of the study period, those who take the drugs tend to have lost a little less mental function than those who didn't take them.

2. Experts continue to debate whether the improvements seen in research studies are really meaningful. Even if researchers find that taking these drugs means better scores on a special mental quiz, that doesn't necessarily turn into noticeably better quality of life for people with dementia or their caregivers. This could be because the impact of the drugs tends to be small. If you have a loved one taking these medicines, and you've found yourself wondering if they're really helping, you're not alone. Often families feel that these medicines don't have much effect, an intuition confirmed by a 2008 evidence review, which described the benefit of these drugs as "marginal".

3. We don't know much about how well these drugs work when used for years and years, or in people with very advanced dementia. This is because most of the research is done on people with mild to moderate dementia, and studies almost never last for more than a year. So far, there's no reason to think that these drugs might work better in advanced dementia, and some experts think they're less useful.

4. These drugs do seem to help certain people with behavior and function. Although the consensus is that overall these drugs have only a small effect, in some people they seem to make more of a difference. Unfortunately, researchers haven't yet figured out how we can identify those people ahead of time. For now, the only way to know whether the drugs will help your loved one is to give them a try: You might be one of the lucky ones that then notices an improvement in sleeping or less irritability.

My prescription:

  • Know that these medicines may or may not help, and if they do help, a small effect is much more common than a dramatic effect. The American College of Physicians and the American Academy of Family Physicians have posted a summary for patients.

  • Consider a trial period. For a person who's been taking these drugs for a while, consider asking the doctor to stop them, and see what happens. Often things don't get any worse, and sometimes a person's diarrhea or dizziness gets better. If your loved one does seem much worse after you've given the medicines a few weeks to wash out, you can always ask to resume the medications.

  • If the cost of medications is an issue, schedule a special visit with your loved one's doctor, to review the purpose of each medication, and see if any medicines can be eliminated.

  • Don't feel too guilty if the cost of the medications is the little nudge that results in a trial off drugs like donepezil and memantine. Taking care of an older person with dementia is difficult and expensive. I wouldn't be surprised if you find that the money you were spending on dementia drugs ends up better spent on extra help around the house or other things that can more directly improve the quality of life for a family struggling with dementia.

  • Given all the uncertainty about the benefits of medicines like donepezil and memantine, it's simply smart caregiving to review their use as dementia progresses. What's your experience been? Are you wondering about this, too? Are you considering a trial off these medications? Or do you believe your loved one is thriving thanks to the drugs?

Did you find this information helpful? Why or why not? Dr. Kernisan wants to know, so she can keep improving this blog and better serve this community of caregivers. Your comments and e-mails to her will be very much appreciated.

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30 Comments So Far. Add Your Wisdom.

8 months ago

This information is exactly what I have needed. I have recently spoken with one of my husbands physicians about the effectiveness of Aricept and Namenda. For some time now I have felt strongly that these medications do not slow down the disease process. (He was on Exelon for a couple of years ). I am his primary and only caregiver (just began in home help this week ). Fact is his cognition and fuctionality have steadly declined. I am ready to stop Aricept , continue Namenda for a time and see if his condition improves, no change or continues to decline . I have no guilt feelings about this - I talk with physicians, his neuologist - research/read everything I can find on the disease(Lewy body dementia) , treatments/medications. Thank you for this article.

about 1 year ago

If it was not for the fact that I get the medication for free from the pharmaceutical company's I would have stopped them a few years ago because I do not think they do much anymore, But sins I do not have to pay all that mony I may stay with them for a while longer User - Kay Paggi Expert
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about 1 year ago

It is so important that caregivers know that these drugs may not be helpful. Caregivers feel guilty needlessly about so many things, it's helpful for them to hear that spending limited resources on these drugs can be a wise decision.

about 1 year ago

this is a question I have asked and never really got a helpful answer. I now at least see the corundum.

over 1 year ago

.I am having no luck getting a renewal order from our MD for Doneprizel. I now feel that my days of waiting aren't as critical as I thot they might be. My husband is 88, also takes namenda and I see no improvement but a slow worsening esp in the memory department and substituting words.He's physically fine.

Anonymous said over 1 year ago

Excellent ! I believe there is not a rigth answer. Depends on each individual. Fater reading the artcle I steel do not know what to do.

almost 2 years ago

Why are you posting an article that's 3 years old? Why does this doctor recommend taking patients off a medication like Namenda when it's known that once off that med the decline becomes more rapid and the person can't be put back on to make up the difference in that decline while off the medication? Why doesn't the article mention that if insurance doesn't pay for these medications, both have special programs whereby they are provided FREE from their respective companies so that NO ONE has to worry about doing without because of the cost, and that now there are generic versions? And yes different people react in different ways, so these medications may work differently in patients, but the tone of this article is that one should take their person off these medications which generally do improve the symptoms of dementia/Alzheimer's. Namenda does tend to lessen the behaviors of paranoia and agitation, the fidgeting with ones hands and feet when anxious. Aricept seems to improve the abilities to do basic tasks like being able to dress, set the table, assist with preparing meals, stuff like simple chores. I do know from my own experience when my mother in law had her Namenda dose left out by mistake for two weeks after transfer to a SNF, that her behavior changed markedly. She became very agitated, anxious, disturbed and her fidgety hands couldn't be still at all. Those symptoms got worse and worse, so I eventually talked to the Drug Nurse and we went through her meds, and sure enough the Namenda that she'd been taking for several years had not been listed on her transfer sheet, so she hadn't had it and it was affecting her behavior. We did get her back on it, but she was never as calm and content as she had been before the time off the med. Be careful and be aware that people discounting medications have an agenda also.

about 2 years ago

M has just started taking memantine, half a tablet, and they are making her very drowsy, Will that get worse when she is on the full dose? We don´t expect any changes for months.

over 2 years ago

I believe that the medications both Arricept and Namenda have slowed the dicese for my husband How ever I am not sure now if it is still helping but he has advanced slower compare to others in my support group He was put on both med.s when he was diagnosed with A.D? I am now getting the medications from the pharmacutical company ,with out that I would stop the med. and see if it made a diference

Anonymous said over 2 years ago

My sister(an R.N.) & I took our mother off Exelon & Namenda after over a year because they did not help that we could tell & caused bizarre behavior that our mother even commented on.

over 2 years ago

My husband was miserable on Aricept. He started at 5mg and went to 10. The diarrhea was terrible and adversely affected his quality of life. He is off it now and I do notice a difference in his abilities and behavior. He sleeps a LOT now. No more weird dreams though. He appears to have a diminished ability to relate verbally. I think he seemed more alert when on it. If he goes back on it, it will be his decision. I probably should speak with him about it and ask his feelings and opinion. He's been off a couple of months now.

about 3 years ago

I have the same thoughts about the medication my mom is taking. She is currently on namenda and she still have outbursts especially in the evenings. And she gets quite nasty.

about 3 years ago

My experence of as a caregiver is that when the family decided to take her off Namenda and Donepezil she went from doing fun things feeding herself and Toileting and dressing herself to bedridden for 2 weeks before she passed within 6 weeks

about 3 years ago

more explanation of symptons of the stages of Dementia

over 3 years ago

It appears that from all the comments there is no right or wrong answer . Each of us(caregivers) must make the decision to continue meds or to discontinue them based on our own circumstances. Whatever you decide,do so with no feeling of guilt. No one walks in the shoes of the loved one or the caregiver,except you, me and our loved one. I am fortunate in not having to makea decision based on financial reasons, but whether I am prolonging the inevitable even now as my wife asks that she be relieved of a living out her life as she feels it at this time.

over 3 years ago

I would like to know that to, my husband has bean on Aricept and Namenda for 7 years and has no long or short term memmory, but otherway fuctions preety good, Still walks every day helps vacuming and little yard work dersses him self ( I get the clothing ready for him) I also have bean thinking of taking him off. we could use that mony to do some fun things that he still likes But if all that chanses I would not do it?

over 3 years ago

This is helpful,I have been thinking about taking my mom off of her "memory meds." It makes me sad to think that she may get worse , and never regain where we are now. She is tired of taking her meds. She sits, and sleeps about 70% of the day. She loves puzzles but it is becoming harder for her to work them. I'm going to seek wisdom and direction from God before talking to my siblings and her doctor . Be in prayer with me regarding God's will. Thanks for your prayers.

over 3 years ago

I have no comparisons, so I follow the meds prescribed by my wife's neurologist., namely memantine and galantamine.

almost 4 years ago

My husband has a sister who has been diagnosed with Alzheimer's as well. They both repeat after each other infinitum but when socializing they both do well. She is only taking one medication to my husband's schedule of both Namenda and 23mg Aricept. I really think she is better off. Up to last month we were paying $30 per a month's worth of each medication but now it has changed to $287 for Namenda and the same will happen with Aricept. That just changes things radically. I have decided to stop both medications until my husband's next appointment with the neurologist. I just don't see any improvement. I would rather concentrate on quality of life by having more experiences and more enjoyable life. This rise will destroy the quality of life for both of us and will make me even more depressed. It's going to wipe us out and then what? We need to be able to pay for long term care when the time comes. I need a break. I am a lone caretaker and I have a right to survive. I don't feel that I have to head for poverty or have to lose everything for a medication I am unable to justify its nebulous positive effects, if any.

almost 5 years ago

My father has dementia and does not seem to have benefited much at all from pharmaceutical therapy. He is in a facility now as my mother could no longer handle him at home, even though he was in day care Monday through Friday and she had in-home help three days a week. In our case we cannot take him off the drugs however as he has a tendency to become agitated and violent and we have to consider the safety of his caregivers. While still at home one of the drugs -- I forget which one -- caused significant problems such as an inability to sleep and hallucinations. Also, one of the drugs caused severe problems with his motor functions; he was unable to walk properly or hold his head up. I suspect in part the severity of the his side effects might be reflective of fewer studies on the effect and effectiveness of drugs on minorities. I have spoken to someone whose grandmother is on Aricept with marked improvement so the only thing to do is monitor your loved one and try to determine what makes the most sense for that individual.

almost 5 years ago

My Mom, age 84, has been on Aricept and Namenda for a couple of years. I wonder if she needs it at all. She is also in the donut hole and the expense is high. About one year ago she told her osteoperosis doctor that she is exhausted all the time (in addition to not being able to remember anything). She suggested a sleep study and it was discovered that she wakes up 50 time an hour, never reaching the level of sleep that provides rest, dreaming, etc. No wonder she can't remember and is exhausted all the time! We tried CPAP but while living alone she was not able to comply even though I went over and got her into it every night for a month. I am retiring at the end of the month so that I can bring her to live with me. I believe the problems are all due to sleep apnea and will improve under close supervision. I wonder how many other people have it and don't know it.

Anonymous said almost 5 years ago

As a nurse I agree with doing a trial to see if the medication is really working. Some doctors feel Namenda helps the resident follow commands better. My Mom is on both Aricept and Namenda and she has shown improvement. In the end stage which I see every day there isn't much hope. I would not hesitate to take her off most or all of her medication. End stage Parkinson's especially if he has more "freezing episodes" is something you need to talk with his doctor about. None of his Meds may be working correctly. Some Doctors will get rid of the Aricept and keep the patient on the Namenda. In the late stage I honestly have not seen a difference. If there are behavioral issues they might be more concerned with those increasing if the meds are discontinued. You need to sit down with the doctor and really discuss your options. If he/she doesn't give you the time look for another doctor. That is what I did and it was like night and day. Ask the nurses who they would take their parent to. The best of luck.

almost 5 years ago

Mom is only 79 and has been on Aricept for 3 years. She hit the donut hole this year, so I've been paying almost $200 per month for the past 3 months, for just this one drug, and she's on 5 other things, and 3 vitamins! But when I suggested taking her off of the ARicept, the nurses who help care for her said that she's not "far enough gone" to not benefit from it, and that she's probably still getting a slower "slide" than she would if not on it. Are they right?

almost 5 years ago

My mother was on exelon and namenda for 2 years at first she said and I thought it was working. I'm not sure if it was or if I just wanted to make myself think it was helping. After 18 months my mother was able to tell me that she was losing more and more of her memory and and it was noticeable to me the medicine wasn't working. I took my mother off the medicine with the approval of the PCP and 3 weeks later when I took Mom to her Geriatric Specialist his first reaction was why did you and the PCP take her off the meds and I responded that Mom is the same three weeks later as she was three weeks ago. So, finally he agreed it was the right choice. I truly do not believe these medicines work at all, they just give the patients and caregivers/families hope.

Anonymous said almost 5 years ago

This is by far one of the best discussions and info on a pertinent issue I have seen on in a while. It speaks to a number of issues, and gives valuable, clear, and pertinent info to help make choices. It brings clarity to this controversial topic. I recently had my mother taken off Aricept to see if there would be a difference. The nursing home physician was not happy I insisted on a trial off the medication. I don't yet know what effect there will be, but unless it's dramatic, she's not going back on it....for all the reasons mentioned in the article. Thanks for such a timely posting!

Anonymous said almost 5 years ago

My mom is on donepezil and memantine and has been for about 4 or 5 years. I would love to take her off but I am afraid that she will get worse. What worries me is that she will not be able to recover what she loses,and she will be worse.

almost 5 years ago

My jusband has been on both aricept and namenda from the start abouth 5 years ago, I do think that the madicine help's sins he has progrest slowly and is not much diferant than he was say 3 years ago, he dos have days that he is wors but most of the time he is oK We are in a AD study right now ,and of cours I do not know if he is getting a placebo or med. But so far I am greatfull for the slow dicline.He is also a easy pation he dos what i asked or sugjest and keeps himself busy as much as he can. He is in good health otherwys. But the Doctors tell me each time it will get wors so I hope I will be ready for that Thank you Dr. Leslie I wich I had someone like you near us Thanks Paula

almost 5 years ago

I am also a Geriatric Care Manager in Vancouvre, BC. I have found that when clients have been taken off the various medications, there have at times been no difference. However, they have been on them for quite a while. What I have found is that sometimes it seems that at times these people seem to benefit from intensive social interaction and stimulation as they have, at that point, from the medication. Peter Silin, MSW, RSW;

almost 5 years ago

I'm a professional geriatric care manager. I have a small practice but I've wondered if the drugs are truly effective, based on my observations. I suspect that they drugs are more valuable as a placebo effect on the family and caregivers. They want to see improvement, so they do. I very much doubt the value of early diagnostic tests. Yes, they give the physician a chance to identify a reversible dementia. And, they give the patient time to get end of life paperwork completed. But they also extent the length of time the family and the patient live with a terminal diagnosis. I have a first degree relative who had Alzheimer's; I don't want to know if I have the gene. I appreciate your honesty in this response. Thanks.

almost 5 years ago

This is very helpful. My mother was put on Aricept a few months before her stroke (at 89) because she recognized some increasing memory and cognitive problems. We didn't see any help, but it was only a few months and she was having other health issues. After her stroke and admission to nursing home she began to recover, back to about mid or mid-late stage dementia level, but was very tired, low appetite and not much social interest. I wanted to test taking her off Aricept to see if it improved her, but some of the nursing home staff was convinced that their experience has been sudden decline in patients, and it would not be recoverable as far as physical and mental function. I found out my aunt had reacted poorly to Aricept and did better off it, so took Mom off with her Dr's blessing but the staff still apprehensive. She improved greatly as far as alertness, mood and sociability - also is able to read a bit now and we see no real decline in any abilities. Now I face the same issue with my Dad - Parkinsons and falling more and confused, has been on Aricept along w/Sinemet for 5-10 years at age 92. Could the Aricept be making his confusion, sleep problems and balance/energy worse? Is taking a "break" from Aricept really risk-free as you say or is there a chance that they will loose abilities that can't be recovered by going back on the medicine?

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