If someone in your family has been diagnosed with Alzheimer’s or another dementia, chances are that they’ve been prescribed one of the “memory medications.”
But were they told what to expect, and how to judge if the medication is worth continuing?
I’ve noticed that patients and families often aren’t told much about how well these medications generally work, and or how to determine if it’s likely to help in your situation.
So in this post, I’ll explain how the four medications in wide use work. I’ll also address some of the frequently asked questions that I hear from older adults and families.
If someone in your family is taking one of these medications or considering them, this will help you better understand the medication and what questions you might want to ask the doctors. It’s especially important to understand the pros and cons if finances or medication costs are a concern.
Note: This article is about those drugs that have been studied and approved to treat the cognitive decline related to dementia. This is not the same as treating behavioral symptoms (technically called “neuropsychiatric” symptoms) related to dementia, such as paranoia, agitation, hallucinations, aggression, sleep disturbances, wandering, and so forth. There are no drugs FDA-approved to treat the behavioral problems of dementia. The off-label use of psychiatric medications, such as Seroquel, in dementia is covered here: 5 Types of Medication Used to Treat Difficult Dementia Behaviors.)
4 Medications FDA-Approved to Treat Dementia
FDA-approved medications to treat Alzheimer’s and related dementias basically fall into two categories:
Cholinesterase inhibitors. These help increase the amount of the neurotransmitter acetylcholine in the brain. Acetylcholine helps neurons function well.
- Three such medications are FDA-approved to treat Alzheimer’s in “mild to moderate” stages:
- Donepezil (brand name Aricept)
- Rivastigmine (brand name Exelon)
- Galantamine (brand name Razadyne)
- Tacrine is a fourth cholinesterase inhibitor which was FDA-approved but is no longer in use due to a much higher risk of side-effects
- Donepezil and rivastigmine have also obtained FDA-approval for the treatment of more advanced dementia
(For more on what “mild-to-moderate Alzheimer’s disease” means, see “How to Understand the Stages of Alzheimer’s & Other Dementias.”)
Memantine. This is the name of an actual drug rather than a class of drugs, but since it’s the only one available of its type, experts consider it the second category of dementia treatment drug.
- Memantine (brand name Namenda) is FDA-approved to treat “moderate to severe” Alzheimer’s disease
- Memantine is an “N-methyl-D-aspartate (NMDA) receptor antagonist.” It dampens the excitatory effect of the neurotransmitter glutamate in the brain.
Since over-excitation of the neurons has been associated with neurodegenerative disease, memantine is considered a “neuroprotective” drug. Hence it is potentially a “disease-modifying treatment.”
In comparison, cholinesterase inhibitors are considered “symptomatic treatment,” as they affect the function of neurons but not the underlying health of neurons.
In other words: memantine might slow down the underlying progression of Alzheimer’s, even if it doesn’t appear to be helping a person. Cholinesterase inhibitors don’t change the underlying progression of Alzheimer’s, but they can potentially help a damaged brain work a little better.
What about the “new” Alzheimer’s drug?
You may have also heard that on June 7, 2021, the FDA approved a new drug for the treatment of Alzheimer’s disease, aducanumab (Aduhelm). The approval was controversial, as the FDA’s scientific advisory panel had recommended not approving this treatment. In 2022, Medicare announced limited coverage and essentially will only cover the cost of the drug for those who are in clinical trials and meet certain other criteria.
Aducanumab is an antibody treatment that works by reducing amyloid-beta plaques in the brain. In the studies that led to FDA approval, it was only used in patients who had proven amyloid in the brain on PET scan, and were otherwise in the “mild cognitive impairment” stage or early-stage of Alzheimer’s disease.
In studies, aducanumab did seem to reduce amyloid-beta in the brain. However, it’s not yet known if this will translate to meaningful improvements in cognition or if this will delay the progression of Alzheimer’s. (It certainly is not going to reverse or “cure” Alzheimer’s.) Furthermore, serious side-effects such as brain swelling or small bleeds in the brain affected at least 10% of patients.
Here is a good overview of the aducanumab controversy: Aducanumab for Alzheimer’s disease?
The remainder of this article will focus on cholinesterase inhibitors, memantine, and other options widely available to people with Alzheimer’s and other forms of dementia. I will also explain what is known about these medications for mild cognitive impairment.
Frequently Asked Questions About Dementia Medications
How well do cholinesterase inhibitors work?
This is a topic that has been intensively studied and somewhat debated. Of note, most major studies of cholinesterase inhibitors are industry-funded; only the AD2000 trial was not industry-funded.
Overall, in mild to moderate Alzheimer’s disease, the average benefit seems to be a small improvement in cognition and ability to manage activities of daily living. The effect has been sometimes compared to a few months delay in progression of symptoms. (It is not clear that treatment with cholinesterase inhibitors affects long-term outcomes such as the need for nursing home level of care.)
A 2008 review of the scientific evidence concluded that the effect of these drugs is statistically significant but “clinically marginal.” This conclusion was also reached by a 2018 review of the evidence.
But there’s a catch to consider: studies also suggest that although a fair number of people (30-50%) seem to experience no benefit at all, up to 20% may show greater than usual response. So there seems to be some individual variability in how these drugs work for people.
It may also depend on the type of dementia a person has, with some studies suggesting cholinesterase inhibitors have an effect in many people with Parkinson’s disease dementia, and perhaps also dementia with Lewy bodies.
To date, we have not developed any good ways to tell ahead of time who will respond to these drugs.
So it’s important to follow a person’s cognitive symptoms, and side-effects, once they start taking a cholinesterase inhibitor. If it doesn’t seem to be helping, it’s reasonable to consider stopping the medication after a few months.
How well does memantine work?
In people with moderate to severe Alzheimer’s, memantine seems to provide some benefits, in terms of slowing the deterioration of Alzheimer’s. But again, the benefit overall seems to be fairly modest.
It’s not at all clear that people with mild to moderate Alzheimer’s benefit from memantine; a 2011 review concluded that the scientific evidence doesn’t support this claim. This was confirmed by a 2019 review of memantine for dementia.
Do these medications work for dementias other than Alzheimer’s disease?
These medications have been studied for other forms of dementia, including vascular dementia, Lewy Body dementia, Parkinson’s dementia, and mixed dementia.
Bear in mind that the older people get, the more common it is to have mixed dementia, and the harder it is to make a specific determination of the underlying cause of dementia. In geriatrics, we generally assume there is mixed dementia if people are over age 85. (For more on how common mixed dementia is, see this article about the Religious Orders Study and Rush Memory and Aging Project.)
Studies generally find that cholinesterase inhibitors are associated with modest improvements in symptoms in Lewy Body dementia and Parkinson’s dementia.
A 2021 review of cholinesterase inhibitors for vascular cognitive impairment concluded that there is evidence of “a slight beneficial effect on cognition in people with VCI, although the size of the change is unlikely to be clinically important.” (Of note, the mean age of participants in those studies was 73.)
For memantine, some research suggests it can help with vascular dementia, although the benefits again seem to be quite modest.
The effect of memantine on Lewy-Body dementia and Parkinson’s dementia is less clear, with some research suggesting a small benefit but also reports that some people experience worsening hallucinations and delusions with memantine.
Do these medications work for mild cognitive impairment?
Not as far as we know. The research evidence so far indicates that dementia medications do not improve outcomes for mild cognitive impairment.
However, it remains very common for patients with mild cognitive impairment to be prescribed donepezil (brand name Aricept) or another cholinesterase inhibitor.
In principle, this should be done as a trial, meaning that the patient and clinician decide to “try” the medication, see if it’s helping with memory or other thinking difficulties, and stop if it doesn’t appear to be helping.
In practice, many people with mild cognitive impairment end up taking the cholinesterase inhibitor indefinitely. They may be reluctant to stop, but in other cases, it may be that the prescribing doctor doesn’t get around to checking on whether the medication is helping or not.
For more on mild cognitive impairment, see How to Diagnose & Treat Mild Cognitive Impairment.
What are the side-effects of these medications?
Doctors — including geriatricians — consider these medications to be “well-tolerated.” This means that most people don’t experience more than mild side-effects, and serious adverse events are rare.
For cholinesterase inhibitors:
- The most common side-effects are gastrointestinal and include nausea, diarrhea, and sometimes vomiting. These affect an estimated 20% of people.
- People tend to adjust to gastrointestinal side-effects with time. It helps to start with a small dose and gradually increase. Rivastigmine is also available in a patch formulation, which tends to cause less stomach upset.
- In the oral formulations, donepezil tends to cause fewer side-effects than rivastigmine and galantamine.
- Some people also experience dizziness, a slowed heart rate, headaches, or sleep changes.
For memantine:
- Dizziness is probably the most common side-effect.
- Some people seem to experience worsened confusion or hallucinations.
- Memantine generally seems to cause fewer side-effects than cholinesterase inhibitors do.
Is it common to take more than one medication for dementia at the same time?
It’s quite common for patients to be prescribed a cholinesterase inhibitor plus memantine.
This “combination therapy” has been studied in people with moderate-to-severe Alzheimer’s, and some research suggests a small benefit compared to treatment with just one medication. However, the benefit again appears to be modest at best.
A study of combination therapy in people with mild-to-moderate Alzheimer’s did not show benefit.
Although there is no good research evidence indicating that combination therapy is beneficial in mild Alzheimer’s, in my experience it’s common for people with mild Alzheimer’s to be prescribed combination therapy. Probably this happens because patients — and doctors — want to try anything that “might” work. In most cases, combination therapy for people with mild Alzheimer’s doesn’t seem to be harmful. But, it’s probably not doing much, other than increasing medication costs.
There is no reason to take more than one cholinesterase inhibitor at the same time.
At what point do you stop dementia medications? We’re not sure it’s making a difference.
Many patients and families feel these medications don’t have much effect. This isn’t surprising, since the research results usually find that the effect in most people is small to non-existent.
As cholinesterase inhibitors are “symptomatic” treatment and not disease-modifying, if there’s no sign of improvement after a few months on the maximum dose, many experts agree that it’s reasonable to stop the medication.
That said, as these medications are well-tolerated by most patients and are unlikely to cause harm to anything more than one’s wallet, it’s common for people to remain on cholinesterase inhibitors indefinitely.
As for memantine, this drug is potentially “disease-modifying.” So it may make sense to continue memantine for a few years, even if no improvement is noted by the clinician or family.
Experts generally agree that there’s not much value in continuing either category of medication once a person has reached the stage of advanced dementia, at which point a person is bedbound, unable to speak, and shows little sign of recognizing familiar people.
Do people get worse when they stop dementia medications?
Research suggests that some patients do appear to get worse after stopping cholinesterase inhibitors.
If this appears to be the case, it’s reasonable to resume the cholinesterase inhibitor.
The discontinuation of memantine hasn’t yet been rigorously studied. An observational study of nursing home residents suggested some worsening after stopping memantine.
A Canadian consortium of experts published guidelines on the deprescribing of dementia medications in 2022.
Do any vitamins help treat dementia?
Vitamin E — which works as an anti-oxidant in the body — has been studied for the treatment of Alzheimer’s, and may be beneficial.
In 2014, a large study of patients with mild-to-moderate Alzheimer’s disease found that daily treatment with 2000 IU/day of Vitamin E resulted in less functional decline than treatment with placebo, memantine, or a combination of memantine and vitamin E.
Of note, since the study was conducted in the VA (Veteran’s Affairs) health system, most participants were men. And again, the benefit seen was modest.
It is not clear that vitamin E helps for mild cognitive impairment. Always talk to a doctor before trying vitamin E for brain health, as vitamin E can increase bleeding risk in some people.
No other vitamins have been shown to slow cognitive decline in Alzheimer’s or other dementias. In particular, although low vitamin D levels have been associated with a risk of developing dementia, no clinical research has shown that treatment with vitamin D helps people maintain cognitive function.
A study of vitamin B supplementation in the treatment of people with mild to moderate Alzheimer’s disease did not show any benefit. Note that participants in this study had normal vitamin B12 levels at baseline; the very common problem of vitamin B12 deficiency in older adults can cause or worsen cognitive problems.
A practical approach to dementia medications
It’s easy to get a bit lost in the weeds, when it comes to medications to treat the cognitive decline of Alzheimer’s and other dementias.
Overall, these are medications that seem to offer only a little — if any — benefit to most people.
In particular, using these medications is unlikely to help a person with Alzheimer’s remain cognitively well enough to live at home safely, or otherwise provide the type of improvements that families are often hoping for. (The effect of these drugs is just not that strong.)
These drugs are indeed widely prescribed, because patients are usually anxious to do everything possible to preserve their mental abilities, and because doctors want to be able to offer *something*. And most of the time, they don’t seem to harm patients or cause significant side-effects.
I think it’s reasonable for people to take or try these medications, as long as they are aware of the evidence regarding the usually modest benefits.
So what should you do about medications, if you or your older relative has been diagnosed with Alzheimer’s or another dementia?
If you have already been on dementia medications for a while:
If you aren’t experiencing side-effects, you may want to continue on the medications indefinitely.
But if you are concerned about medication expenses and pill burden, consider a trial of stopping the medication.
After all, the overall benefit of these medications is small. And you can always restart dementia medications if you think the dementia symptoms got worse off the medication.
If you are just starting the dementia journey:
If you are debating whether to start medications for dementia, keep in mind the following points:
- Only cholinesterase inhibitors are FDA-approved for mild to moderate dementia. You should definitely ask questions if a clinician proposes starting memantine during the early stages.
- Cholinesterase inhibitors are for symptomatic treatment and do not alter the underlying neurodegeneration. They provide a modest benefit to some people but many people don’t seem to benefit. We are not yet able to tell ahead of time whose symptoms will improve with these medications.
- A reasonable and careful approach is to work with the doctor on a “trial” of a cholinesterase inhibitor. This means:
- Carefully documenting cognitive symptoms before starting the medication.
- Starting the medication at a low dose, and increasing to a full dose over time.
- Monitoring for side-effects, such as nausea, vomiting, or diarrhea. These do usually get better with time. Consider lowering the dose or switching to a patch formulation if the side-effects are difficult to handle.
- Working with the clinician to reassess cognitive symptoms after 2-3 months. If no improvement has been noted by the patient, family, or clinician, consider stopping the cholinesterase inhibitor.
Other ways to preserve cognition and brain function in dementia
Here’s the most important thing to keep in mind, when it comes to managing the cognitive decline of Alzheimer’s and other dementias:
Medications are only a small part of the solution.
In fact, there are many non-drug ways to optimize brain function. They work for people who don’t have dementia too, so I’ve listed them in this post: How to Promote Brain Health: The Healthy Aging Checklist Part 1.
If you’re concerned about preserving brain function and delaying cognitive decline, you’ll want to review the ten approaches I cover in the brain health article.
For instance, people often don’t realize that many commonly used medications are “anticholinergic,” meaning they interfere with acetylcholine in the brain and worsen thinking. In other words, these medications essentially have the opposite effect of the cholinesterase inhibitors. Which is not so good for the brain.
In a perfect world, your doctors and pharmacists would notice this problem and stop the anticholinergic medications, or at least discuss the pros and cons with you. But as our healthcare system is still highly imperfect, this may not happen unless you ask for a medication review.
Delirium is another common problem that can worsen dementia and often accelerates cognitive decline. So to manage dementia and delay cognitive decline, it makes sense to learn about delirium prevention.
The bottom line on medications to treat dementia
In short: the medications we currently have available to treat Alzheimer’s disease and other medications may help a little. The main harm people experience will be to their wallets. Don’t expect these drugs to work miracles and consider stopping them if you are concerned about drug costs or pill burden.
And above all, don’t forget to think beyond medications, when it comes to optimizing brain function and delaying cognitive decline in dementia.
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The material on this site, including any exchanges in the comments section of the blog, is for informational and educational purposes only.
Any comments Dr. Kernisan may make regarding an individual’s story or comments should not be construed as establishing a physician-patient relationship between Dr. Kernisan and a caregiver, or care recipient.
None of Dr. Kernisan’s website or group information should be considered a substitute for individualized medical assessment, diagnosis, or treatment.
jOYCE R GOODRICH says
My husband now would seen to have mod to advanced Alzheimer and has become eradicate in taking his medications , insists on chewing or not taking at all. Include his Alzheimer pills as well as cardiac meds. In discussing this with his primary physician when I asked if the eradicate pill taking was dangerous he srurged his shoulders and implied don,t worry about it. My husband is 86, i had already come to this conclusion, but was glad to have it agreed with by his doctor.
My concern is our children (3) and my nephews (6), the next generation. My husband’s grandfather, mother, aunt, uncle, brother and sister had late unset Alzheimer. A cousin died of early unset.
I understand that Lithium is now being considered for use in Alzheimer-s do you have any information on that research ?? . we started taking Lithium Orotate 120 mg. 3 per day when Johnathan V. Wright MD recommended it in his news letter years ago.
Leslie Kernisan, MD MPH says
Lithium is indeed being studied for the treatment of Alzheimer’s disease, and has shown some promise:
The Putative Use of Lithium in Alzheimer’s Disease
Lithium as a Treatment for Alzheimer’s Disease: A Systematic Review and Meta-Analysis
Microdose lithium treatment stabilized cognitive impairment in patients with Alzheimer’s disease
As best I can tell, it’s still quite experimental, and it’s too soon to know what the effects — and side-effects — are in the long-term. Be sure to work closely with your doctors if you are interested in experimental therapies, and consider enrolling in a trial when possible. (Clinical trials have procedures in place to monitor safety and side-effects.)
Kathy says
This article is very very useful to me. My mother is 81 and was “diagnosed” as Alzheimer early this year. Actually doctors in the public hospital in Hong Kong did not explain to me clearly what kind of Dementia my mother is suffering. They prescribed Memantine after she completed the MMSE test with only 19. After six month of medication, I found my mother’s appetite was affected and ate less, especially at breakfast. We told the doctor (not the one who prescribed Memantine) prescribed Exelon in patch from. Now my mom’s appetite becomes better but than the patch gives rise to skin reaction, making her itchy and a little bump on the site. Recently she feels dizzy more frequently, almost once a day every morning. She used to have this problem before any medication last year but it is more frequent now. The hospital told us that the patch would not have such “side effect”. Later the doctor prescribing this patch prescribed Donepezil.
Our family decided not to let my mom take Donepezil as the potential side effect on her appetite concerns us. We think that even if the drug can help maintain her memory, the bad appetite may on the contrary affects her physical body, let along other know and unknown side effects of this drug. On the other hand, even we apply Exelon patch, we will remove it before she goes to bed hoping that the itchy feeling will fade away so that she can sleep better.
In addition to medication, my mom goes to day care centre twice a week where she has cognitive training of various kinds/forms and she may re-develop a social relationship. We take this as a non-medical treatment.
Am I doing right in respect of using those medicines? Not sure if it will worsen the condition if I do not follow the exact drug instruction by keeping the patch 24 hours. Regarding her dizziness in the morning, what else should I do/ask the doctor? Many thanks.
Leslie Kernisan, MD MPH says
Rivastigmine (brand name Exelon) and donepezil (brand name Aricept) are both cholinesterase inhibitors. Normally we would not give a person both drugs at the same time. When it comes to medications that are delivered by patches, you usually want to wear them all the time, to keep a consistent blood level of the medication. If your mother is getting a skin reaction to the patch, then perhaps she should try one of the other cholinesterase inhibitors.
As I explain in the article, since not everyone seems to benefit from cholinesterase inhibitors, many experts recommend a trial of the medication for a few months, and then stopping if it doesn’t seem to be helping.
Regarding dizziness, it is a known side-effect of memantine, but there are also many other problems that can cause this in older adults. We often start by checking to make sure this problem is not related to any medications, and we also usually check blood pressure sitting and standing, to make sure it’s not low when the person stands.
I would recommend you make sure her doctor knows that she has been dizzy. It might be reasonable to try stopping the memantine, to see if that helps with the dizziness. Good luck!
Kathy says
Thanks a lot for your prompt reply. In fact, my mother switched from menantine to Exelon patch in July because her appetite was affected by menantine. She is using Exelon patch now and her dizziness (or may be called syncope?) becomes more frequent.
We are going to visit the doctor this morning. I will discuss it with the doctor.
Many thanks again.
Leslie Kernisan, MD MPH says
For what it’s worth: syncope means loss of consciousness. It can be caused by several different things, such as fall in blood pressure or by certain types of neurological reflexes. People usually describe feeling light-headed beforehand, or feeling their vision get tunnel-like.
It’s important to distinguish this feeling of light-headedness from other sensations that are sometimes described as “dizziness”, such as the feeling of “vertigo,” which means feeling the room spin, or the floor tilting.
In short, “dizzy” is a term that can mean a lot of things. Hopefully the doctor will ask extra questions to sort this out, because perhaps it’s not due to her dementia medications. Good luck!
Barbara says
Your article was most helpful. Of course I sa my Dr today. Forgot to ask what would help. I’m taking ginkgo biloba. Flex seed oil and gorsace(sp) and omega3. Are these helpful? Your articles are awesome and provide current test and research into what you write which is something “some” don’t do. Thank you for your diligence and attention to detail. God bless you richly
Leslie Kernisan, MD MPH says
Gingko has been studied but the evidence is mixed, and in one well done trial, it was found to have no effect preventing dementia:
Ginkgo biloba for Prevention of Dementia: A Randomized Controlled Trial
Interestingly, the same team found that what seemed to help reduce the risk of Alzheimer’s was blood pressure medication, especially in people who did not yet have mild cognitive impairment: Antihypertensive drugs decrease risk of Alzheimer disease: Ginkgo Evaluation of Memory Study
The research on omega-3s is likewise a bit mixed but honestly seems more promising, here is a recent article:
Omega-3 Fatty Acids Moderate Effects of Physical Activity on Cognitive Function
There seems to be less research on flax seed for cognition but apparently it is nutritious for other reasons, so seems reasonable to have it, but I wouldn’t count on it — or really any single nutritional intervention — to prevent cognitive decline.
Generally I advise people to focus on making sure they get enough exercise, avoiding medications that slow brain function, and then eating a diet that is good for their cardiovascular health, such as the Mediterranean diet. I have more on the research on preventing Alzheimer’s in the article on mild cognitive impairment: How to Diagnose & Treat Mild Cognitive Impairment. Good luck!
Lindiwe says
I have problem with my mother who I think got memory loss doing silly things working the whole day,talking the things that we don’t understand.What medication can i get to help her for her memòry to come back
Leslie Kernisan, MD MPH says
Before trying to treat a problem, it is important to try to understand what is CAUSING the problem.
So if you are concerned about your mother’s memory, I would highly recommend that you have the doctors evaluate her, to understand what might be causing her memory problems. I explain what this evaluation should include in these two articles:
How We Diagnose Dementia: The Practical Basics to Know
How to Diagnose & Treat Mild Cognitive Impairment
Generally there is no medication that helps people’s memory come back. In some cases, we do find a treatable condition that is causing most of a person’s memory difficulties (such as low thyroid), and then it might be possible to improve memory by treating that condition. good luck!
Connie Moore says
Is it common for a neurologist to prescribe dovepezil if the patient shows no sign of dementia
Leslie Kernisan, MD MPH says
In my experience, it’s common for neurologists to prescribe donepezil to people with mild cognitive impairment, even though the best available research indicates this is unlikely to have much effect.
For more on mild cognitive impairment, see
How to Diagnose & Treat Mild Cognitive Impairment
Bill Talbot says
Do any of these medications improve short term memory? my mother is undergoing OT assessment for driving . Honestly I believe she is fine in a practical and awareness and orientational sense, reaction time is reasonable. She is particularly good at navigating in a familiar city of course …
I am however concerned that these tests of short term memory may cause her to stumble. She is very good at keeping a diary, and manages still to fly internationally .
And doesn’t forget where she is .
Is there anything you would recommends takes to help memory .. of the above medications
, Omega 3 ? anything else?
Leslie Kernisan, MD MPH says
So, there are things that help with memory — they are mostly the things that optimize brain function and protect brain health — but they aren’t medications or supplements, which is what people often think of.
For most people, probably what’s most effective is to address “lifestyle” factors, to avoid medications that worsen brain function, and avoiding delirium. I cover those in these articles:
How to Promote Brain Health:The Healthy Aging Checklist, Part 1
How to Diagnose & Treat Mild Cognitive Impairment
How to Address Cardiovascular Risk Factors for Better Brain Health: 12 Risks to Know & 5 Things to Do
In terms of medications and supplements, the evidence is weak for almost everything. There is perhaps a subset of people who experience a noticeable improvement when they take a cholinesterase inhibitor such as donepezil, so it’s often reasonable to try it for a few months.
Good luck!
Xavier Herrera says
Hi,
I gained a great deal of information reading your articles and comments. My wife was 56 when diagnosed with early onset. She is now 59 and restlessness is the main issue. Can you comment on the use of THC to help with restlessness and agitation? There seems to be plenty of conflicting information on the topic. Thank you
Leslie Kernisan, MD MPH says
Glad to hear you are finding the site useful but so sorry that your wife was diagnosed so early.
I don’t have any personal experience trying medical marijuana in people with dementia (and all my own patients are much older than your wife). It seems to me that there still hasn’t been enough research done for any doctor or health expert to have an informed evidence-based opinion.
Interestingly, Alzheimer’s disease is a qualifying condition for medical marijuana in many states. Here is a good recent article that summarizes the state of the (limited) available science:
Agitation in Alzheimer’s Disease as a Qualifying Condition for Medical Marijuana in the U.S.
If you are struggling with restlessness, I would recommend looking into non-pharmacological dementia behavior management. Restlessness is common in Alzheimer’s patients of all ages. You can learn more about how to evaluate it and manage it from your local Alzheimer’s association, or from a good book. I also outline our general approach to difficult dementia behaviors in this article.
Good luck!
Dr Ishtiaq Rehman says
great article. some very good patient-friendly messages and advice. I have passed this advice website on to a few patients already.
Leslie Kernisan, MD MPH says
thank you!
Kari bichell MD says
I’m wondering about your comment about vitamin E …I thought vitamin D have been debunked?Do you recommend it? Also, any thoughts about Ritalin for mild cognitive impairment or dementia
Leslie Kernisan, MD MPH says
I’m not sure what your question is regarding the vitamins. Vitamin E might be beneficial as noted above, I’ve provided a link to the relevant research. Vitamin D has not been shown to make a difference to the progression of dementia.
Methylphenidate (brand name Ritalin) has been studied to treat apathy in dementia and seems to improve this symptom in some people:
Methylphenidate for Apathy in Community-Dwelling Older Veterans With Mild Alzheimer’s Disease: A Double-Blind, Randomized, Placebo-Controlled Trial.
I’m not aware of any research on using methylphenidate in mild cognitive impairment.
Mazharul Alam says
Thanks a lot Dr. Kernisan for your wonderful writings. I had been trying to search at least a way to get a bit relief for my mother and the family. My mother is suffering from this unanswerable disease for the last 3 years. Though she is under 60, she is already in critical stage. For the last 10-12 days she has given up eating. It is hardly possible to feed her solid normal food like, rice, vegetables, noodles etc. We tried with variety of foods and success rate was quite low. Even two days ago I could manage her to drink 3-4 glass of liquid (water, milk, juice etc.) but today she did not take more than 2 glasses and day by day its reducing. She becomes VIOLENT whenever the caregiver / I try to feed something to her or take her to the toilet. As a result the caregiver get scared and naturally one day she may leave. Last night I monitored my mother, she slept for nearly 4-5 hours I believe. and this is happening for the last 8-10 days. But surprisingly she does not look sleepy during the day. I don’t understand this. Quite a few times she did not go to the toilet and urinated in the bed room even sometimes the potty is done in the bed room/balcony. Anyways, this is probably the most difficult time in my life I am passing through. Only God knows when this struggle will come to an end. I am happy to serve for my mother. But at the same time it is painful if you are ready to do for your loved ones, but at a certain stage she/he does not allow you to do that. this is called DEMENTIA, I guess the most scary and destructive disease right now in this world.
Leslie Kernisan, MD MPH says
Sorry to hear that you are facing these challenges. Your mother sounds quite young for dementia, she would qualify as “early-onset.” Such early cases often progress more quickly, or are otherwise more severe. They can also have more unusual causes, compared to more “garden-variety” dementia in people who are older.
If she is declining quickly or refusing to eat, I would recommend asking her usual doctors for help. You may also want to ask them how likely they think it is that she will stabilize or improve.
I have more on decline in dementia here: How to Plan for Decline in Alzheimer’s Dementia:A 5-Step Approach to Navigating Difficult Decisions & Crises with Less Stress
Good luck and take care!
Glad says
Hello Dr Kernisan, I found this article very enlightening. My husband is 87 and started Namenda & Excelon after a heart attack damaged his memory 10 years ago. We have always wondered if these drugs were worth taking but were afraid of the consequences if he stopped. My husband is still able to take care of himself with a little assistance. But his language skills are poor. It’s the same conversations daily. Do you think it’s time to stop the medications? What if my doctor insists that he continues? Is it harmful to stop cold Turkey? Thanks in advance.
Leslie Kernisan, MD MPH says
So, although it’s not clear that these medications help most people, they also seem to be well-tolerated by many people, and some research suggests that a minority of people get worse when the medications are stopped.
You certainly could tell the doctor that you aren’t sure it’s helping (or perhaps that the expense/burden matters to you, which it might), and ask to try tapering off. My clinical resource suggests tapering over 2-3 weeks. If your husband seems worse, you could resume. There’s no clear evidence that a trial off like this is harmful in the long run.
In terms of when to stop these medications, once someone has been on for a long time (e.g. more than a year), it’s fairly common to continue until the person reaches a truly advanced stage at which point they are bedbound, saying very little, not recognizing anyone, etc. It doesn’t sound like your husband has reached that stage yet.
In general, I would recommend you discuss your interest in discontinuing with your husband’s doctor. A taper off to see what happens would not be unreasonable, if you prefer to minimize medications, and you can always resume if it seems he was better on the medications. Good luck!
Julie Dlask says
Dear Dr. Kernisan,
I was thrilled to come across your site with all the common-sense, unbiased information you share with families dealing with cognitive decline. Thank you for honest, sensitive responses to concerns that frequently aren’t addressed satisfactorily between Dr./patient.
In the most recent AARP magazine, the editor wrote, in part, “… diseases such as Alzheimer’s, which has not seen a new FDA approved treatment in more than a decade”. How can a disease be treated effectively when the cause is so elusive? It seems each new scientific finding conflicts with earlier ones. I tend to think the Donepezil/Memantine therapy has been over-hyped and over-prescribed, especially considering the possible side effects of confusion, anxiety, malaise, depression, loss of concentration. How does one judge the benefits to a patient when they are always in a medicated state? Could any of the minimal improvement for some patients be attributed to the 30% placebo effect?
In 2016, at age 60, my sister was diagnosed with MCI, amnestic vs. mild dementia, underlying cause – probable Alzheimer’s. MRI results: hippocampal, lateral and inferior lateral ventricular volumes of less than 1%, 95%, and 98%, respectively. MMSE: 21. She was prescribed Buspirone for anxiety and mild depression (she had several suicidal episodes in the previous 40 years of living in chronic stress). She was started on Donepezil, then Memantine was added. Recently her neurologist took her off the Buspirone and prescribed Quetiapine 75mg, for “sun-downing” symptoms and agitation. I see very little of that when I visit, and she sleeps like a rock for 8 hours every night. This “Q” med concerns me.
As the stress level in my sister’s life has gone way down in the last 6 months, I suggested to her husband that tapering her off the meds to evaluate her condition might be a viable option. He was not very receptive, and the phone call I had with her Dr. did not go well, as he’s adamant she’s being treated appropriately. Do you have any words of wisdom for this situation?
Thank you for filling a very valuable niche!
Leslie Kernisan, MD MPH says
Thanks for your kind words about the site.
I cover antipsychotics and other medications given for difficult behaviors in detail here: 5 Types of Medication Used to Treat Difficult Dementia Behaviors.
If your sister is rarely agitated and even seems a little sedated, then it might be reasonable to try lowering the dose of her quetiapine, to see how she does.
Separate from what is medically reasonable and medically optimal, there is also the question of negotiating things when multiple family members are involved. So especially, if she is living with her husband and he is the one making decisions, then I would recommend being careful and thoughtful about this suggestion. Perhaps it feels like a godsend to your brother-in-law that at least his wife sleeps “like a rock for 8 hours every night” (many dementia caregivers will be envious), and he can’t bear the thought of tinkering with her medication and possibly changing this. If she lives with him, then his wellbeing has to be factored in, because his mood and patience will affect her.
Of course it’s possible that you are already being very supportive of your brother-in-law and that you are communicating well, but if this situation is creating tension between you, I would suggest the book Difficult Conversations (by Stone and Heen). It is a really good resource to help one discuss emotionally laden topics and negotiate a way forward.
If your sister’s doctor is not very receptive, that is going to be tricky to manage if the primary decision maker is your sister’s husband. Many doctors are too cursory with family, but it’s also hard for the doctor when they are getting requests and input from multiple family members.
Hope this helps. So sad that your sister was affected by Alzheimer’s so young. Good luck and take care.
michelle says
thanks so much for the sharing, its really useful. my mum is diagnosed with dementia and she is 63 years old and still running her own business.
we are giving her vitamin b12, asthathxin and dha supplements but she strongly refused to take any medications as her mum has dementia and she think believes that that medication worsened her mum’s condition .
Should we try to convince her to take medication again?
are there other alternatives or activires that are proven to slow down dementia?
thanks so much for your advise
Leslie Kernisan, MD MPH says
63 is fairly young for a dementia diagnosis. Generally I recommend that people of that age get evaluated in a specialized memory center.
The medications described above seem to help some people for a little bit, but they don’t help everyone. If your mother is really reluctant to take medication, I’m not sure it’s worth fighting with her about it.
Exercise seems to help some people with dementia, and is good for many other reasons.
Otherwise, it is not a proven approach but in the book The End of Alzheimer’s, Dr. Bredesen proposes that Alzheimer’s and dementia are multi-factorial, and hence treatment needs to start with a comprehensive evaluation for various contributors and then an extensive individualized treatment plan. His method of assessment has not been validated, nor have his individualized treatment plans, so by usual standards, his science is considered questionable.
That said, I think his book highlights a number of health factors to consider, such as the possibility of sleep apnea, impaired glucose tolerance, etc. So you might read it to get ideas of what kinds of health factors could be optimized for your mother.
Whether she’s likely to benefit from such an approach… no one knows for sure yet. Good luck!
Elizabeth Smith says
Hello Dr. Kernisan,
Thank you as always for this generous comprehensive information. Your articles are always so relevant and helpful.
My father’s dementia has worsened to a stage where he has become quite paranoid and hallucinates a good deal, usually after sundown, of course. He rarely sleeps and has become very anxious and difficult. To make things even worse, he is now completely blind.
I am wondering your opinion of medical marijuana for the treatment of his symptoms. I understand there has been some promising research but I really know very little. I would be most interested in your opinion. Thank you!
Leslie Kernisan, MD MPH says
Thank you for your kind feedback regarding the articles, I’m so glad you find them helpful.
Medical marijuana is indeed being tried for dementia but we don’t yet have enough large well-done trials to know whether it’s likely to be effective, and what the risks might be. I have referred to a PubMed Central article in a comment above. Here is another review of the existing literature:
Cannabinoids for Behavioural Symptoms in Adults with Dementia: A Review of Clinical Effectiveness and Guidelines (2017)
For a person with dementia who has difficult behavior in the evening, I would recommend first looking into non-drug approaches, including avoiding him getting overly tired (yet providing enough exercise, sunlight, and fresh air during the day), and trying to trouble shoot specific difficult behaviors or times of day, as described here: 7 Steps to Managing Difficult Dementia Behaviors (Safely & Without Medications).
If the non-drug approaches have been tried and aren’t working, then you could discuss the possibility of a trial of medical marijuana with your father’s health provider. I also discuss other medications used for difficult dementia behaviors here:
5 Types of Medication Used to Treat Difficult Dementia Behaviors
Ultimately every person is an individual, and a fair amount of trial and error is needed to find a way forward. Good luck and I hope you find a way to improve things soon!
Dr Deepak Anand says
Hello Dr Leslie
Thanx for this wonderful article; my mother is in 4th stage of Alzheimer’s n has been on donep 10 mg (morning) n 5 mg (4pm)
Admenta 10 mg bid
Just 2 days back I visited a neurophysician for a second opinion n he advised me to decrease donep 5 mg bid n Admenta 5 mg bid
For behaviour management he advised qutan 25 mg 1/2 bid
I am really confused as she has bn on donep ( this) dose for last almost 2 yrs n has bn doin reasonably well
Kindly help !
Also enlighten about the research being goin on on the role of SALSALATE n LITHIUM n oblige !!
Leslie Kernisan, MD MPH says
I would recommend you ask her treating physician to explain why he thinks these decreases in dosages are a good idea. Did it seem like she was experiencing side-effects? Or was it more that he thought she wasn’t responding to the medication?
Regarding the medication for behavior, sounds like he recommended she start on quetiapine, which is an antipsychotic. I explain the considerations for using that type of medication here: 5 Types of Medication Used to Treat Difficult Dementia Behaviors. Good luck!
Marianne says
Hello Dr. Leslie:
I wanted to ask you, do you have any new information related Lithium and if it is effective for Alzheimer disease?
Also, do you know if Lithium it will be recommended used together woth Rivastigmine?
My mother has Alzheimer since 2000/2002 but was correctly diagnosed in 2006. She been taking Exelon since that time.
Also, she started to use Memantine since this year and she had a little improvement.
Thanks in advance
Leslie Kernisan, MD MPH says
Hello,
I addressed lithium a few years ago in this comment, which you may have already seen.
Lithium is still considered very experimental. It’s currently being studied both as a neuroprotective agent to be used in MCI, and then also for treatment of agitation in Alzheimer’s.
Neuroprotective agents are often most likely to be effective before significant damage occurs to brain neurons. If your mother has had Alzheimer’s since 2002, she’s already had significant damage to her brain, so a therapy that works for people with MCI may not work as well for her. But that’s why we do research: to answer these questions. Memantine is also considered neuroprotective and in the associated research, the small effect was actually seen in people with more advanced symptoms and not in people with MCI or early Alzheimer’s.
It will likely be years before we have enough research completed to know whether lithium should be recommended, and under what circumstances.
For your situation, I generally recommend focusing on quality of life and also, I’m sorry to say, planning for future decline. I explain that here: How to Plan for Decline in Alzheimer’s Dementia:A 5-Step Approach to Navigating Difficult Decisions & Crises with Less Stress
good luck!
Steve Ewing says
Hello Dr. Kernisan
I was diagnosed with Wernicke-Korsakoff syndrome / Alcohol Amnestic Disorder 4 years ago.
I started taking Donepizel 10 mg without severe side effects, It was increased to 23 mg.
I started having severe daytime sleepiness, and saw no improvement with my memory issues,
I was prescribed Memantine and took both meds for about a month. The sleepiness got so bad I could
not function. I have since stopped take both of the medications. I still have all the same memory issues, I
am simply much more aware of my problems now. I have never taken the Memantine alone, and only
took it together for a short time.
Do you think I should try taking the Memantine alone and see what happens?
Thanks
Leslie Kernisan, MD MPH says
As far as I know, the research on using dementia drugs such as donepezil and memantine for Wernicke Korsakoff is preliminary and I don’t believe large randomized studies have been done. I don’t personally have much experience treating this condition, either. I would recommend consulting with a specialist who has more experience with this. You can also periodically check Pubmed for “Wernicke” and the name of the medication, to see if any significant studies have recently been published. Good luck!
Marianne says
Thanks Dr for your reply. Have a nice day.
Patricia MacIver says
So my husband’s Nero did this because he got a brain fog after surgery. It worked but now I feel it is time to get off it. He is 82 yr old will getting off hurt him? He is taking 10mg 2 a day. Last night he was sleeping and was talking very normal in his sleep. He did not talk slow and it was awesome! During the day he talks very low and slow. So I think it is doing something that is blocking him being normal again.
Nicole Didyk, MD says
Hi Patricia. I’m not sure I completely follow your story, and I can’t give specific medical advice, but I can tell you that all of the medications that Dr. K mentions in the article are indicated for dementia, like Alzheimer’s disease, vascular dementia, or a similar disorder, not just “brain fog”. If someone is taking a dementia medication, we usually use it for the duration of the illness, not just for a brief period of time. Here is what Dr. K has had to say about stopping a dementia medication.
I’m not sure what to make of the “talking” issues you describe. Best of luck!
Nitesh Budhlani says
Hi Dr. Leslie, my Mother is suffering from vascular Dementia/Alzheimer’s from the past 6 years.
She is currently on Aricept,Admenta for the same.
She is getting a bit agitated and seems restless so our doctor has also prescribed Qutan(Quetiapine) 25 -1 tab daily
Can you suggest is it ok to take Qutan(Quetiapine) as from what I read online , this medicine shouldn’t be given to dementia patients.
Nicole Didyk, MD says
Hi Nitesh. Sorry to hear about your mother’s difficulties. Quetiapine is an atypical antipsychotic, a tranquilizer that can be used when an individual is experiencing hallucinations or delusions, but is also used to boost the effect of an antidepressant, and in odler adults with dementia, it is sometimes used to treat the symptoms you describe. Dr. K has discussed alternatives to medications to treat the responsive behaviours that you mention, here.
In Geriatrics, we try to avoid using quetiapine for this purpose, related to the increase in risk of stroke or death that they can confer (compared to adults with dementia who are not on atypical antipsychotics). You can read more about why we try to avoid certain medications in older adults here.
Having said that, every individual is different and your mom’s doctor may have other reasons for choosing that medication, and may be using it in conjunction with other treatments (like modifying the environment or the approach of her caregivers).
And finally, it is always important when there is a change in behaviour of a person with dementia to ensure that it isn’t due to another medial issue, even something as seemingly simple as a urinary tract infection.
Nitesh Budhlani says
Hello Dr Leslie,
My mother is suffering from Vascular Dementia/Alzheimer’s from the past 6 years.
She is taking Admanta and Aricept regularly.
As she is having agitated behavior , the doctor prescribed Qutan 25(Quetiapine)- 1 tab daily.
Is it ok to take Qutan 25(Quetiapine) as from what I read online, it has severe side effects for dementia patients.
Leslie Kernisan, MD MPH says
I explain the use of antipsychotics such as quetiapine in this article: 5 Types of Medication Used to Treat Difficult Dementia Behaviors.
Normally we would consider this type of medication only after exhausting other options, since there are indeed side-effects and risks. If we decide to try this medication, I usually start at an even smaller dose, which is 12.5mg. Good luck!
Paul Hofferber says
I am a 68 year old male with diabetes and neuropathy of my feet. I had read online that lithium would help my neuropathy. So I began taking 120 mg of lithium orotate daily. It did not help. But after about three weeks I began to notice memory improvement. I work as a security guard and would have people come back in asking if I remembered them coming in. I didn’t. But after the lithium I started remembering them. My general overall memory recall has gotten very good. I did not even realize that my memory had diminished. But I should have suspected it as I had two aunts, two uncles, a fraternal grandmother, and a maternal grandfather with Alzheimers.
I was talking with an 80 year old friend and told him about my experience. He told me he was having a problem recognizing faces. He started taking 120 mg of lithium orotate daily. He now has no problem recognizing faces and his general memory recall is now very good. His wife was so impressed she has started taking it even though she has no memory problems.
It is well known now that the brain has neuroplasticity. Could lithium facilitate this? Is the brain substituting aluminum (another metal) for a lack of lithium in patients with alzheimer’s in the tangles that are formed? My research on the internet showed some studies that lithium does play a role in neurogenesis.
Nicole Didyk, MD says
Thanks for sharing your interesting story.
From my quick reading, lithium orotate is a supplement that can be purchased over the counter, and the dose you mention would have about 5 mg of elemental Lithium per tablet. Most people who take prescription Lithium are on about 300-900 mg a day of Lithium carbonate. So the dose in the Lithium orotate tablet is extremely small.
Most of the study of Lithium orotate was back in the 1970’s, but lately there has been some discussion about whether Lithium is an important “trace element” and could be neuroprotetive. The level of scientific evidence we currently have is such that I would not recommend taking Lithium orotate for any particular reason.
Mikey Beach says
My doctor was very candid with me for my mother’s dementia diagnosis at age 79. He told me all the drugs on the market today for Alzheimer’s and dementia are basically worthless !They can come with bad side-effects,usually help very little,some may worsen the condition,and those that may improve it slightly only last a short time and afterwards make it worse ! So really,what’s the point ?
Nicole Didyk, MD says
I don’t know if I would call the drugs we use to treat Alzheimer’s disease “worthless”, but it’s true that for most people the benefits are modest and are probably apparent for 1 – 2 years. The most common side effects are related to nausea, diarrhea and loss of appetite. About 5-30% of people who try the meds have to stop them because of these side effects.
Treatment of dementia is more than just medication. As a geriatrician, I advise trying medication in addition to getting more education, staying physically active and planning ahead. You can watch my YouTube video about it here.
Brenda says
My husband was diagnosed 11 years ago and was put on Aricept and Memantine and it seem to help for a long time, but now he has severe numbers of BM’s and he doesn’t know his son or any of us. He’s short term and long term memory are gone. I’m sorry but he doesn’t really know anything. He still goes to the bathroom by himself (thank God) and feeds his self. His Dr. Took him off his medicines and put him on Seraquel. Do you think this was a good idea? Thank you
Nicole Didyk, MD says
Thanks for sharing your story, Brenda and I’m so sorry that your husband is living with dementia. Typically, the effect of the cognitive enhancers is modest and doesn’t last forever, so your story is a common one.
Generally, the cognitive enhancer drugs can be stopped if there’s no more meaningful benefit, or if the side effects are intolerable ( and may include diarrhea). The quetiapine (Seroquel) is a medication that we try to avoid in older adults living with dementia, unless we think the person would have a better quality of life on it (like if they are struggling with hallucinations or delusions that are very distressing), and then we try to use the lowest dose possible for the shortest time possible.
Jade says
Professionals should quit giving people false hope about these useless Alzheimer’s drugs. The only thing they are good for is lining Big Pharma’s pocket. There is no drug ever made or near to be put on the market that has ever worked at all for preventing or reversing or even slowing down this awful disease. Everyone needs to know this.
Nicole Didyk, MD says
It’s true that the medications we have for Alzheimer’s are not miracle drugs, but they can have modest benefits in reducing symptoms, and for some that’s a meaningful result. You’re right that they do not slow progression or reverse the disease, and I’m hopeful that we may have more effective medications in the future.
robert moore says
I was wondering has there been any research on using CBD for those suffering with dementia?
Nicole Didyk, MD says
Surprisingly, there haven’t been very few well designed clinical trials of cannabis in those with dementia. This systematic review of the evidence (Cochrane Review)was not very enthusiastic, but that was 2009 and there have been a few additional studies since then.
Nonetheless, there are many people in my practice wondering about its effect on responsive behaviours in dementia. The Canadian Agency for Drugs and Technologies in Health has put out this review, which concludes that we need more research to be confident in prescribing cannabis for dementia symptoms.
One of the challenges, at least in Canada, is that cannabis preparations are very inconsistent from batch to batch, such that a person might get stabilized on a certain dose, and then when they open a new vial, they have to recalibrate the dose to get the same effect.
Overall, CBD in particular seems to be safe and well tolerated in those with dementia, and may be worth a try.
Debbie Peek says
I would like to ask one question about how you deal with something much different Concern about a family member fast tracking your mothers death by not being truthful about the condition of your family member. I was not able to be there for my mother the entire time she was brought home from the hospital under hospice. She was not necessarily dying but if she didn’t rally from her kidney failure do yo a UTI, she might. I was with her the first 5 days and she was doing amazing. Up and walking, appetite back, nurses felt she would be off hospice in a few weeks.
Then my sister took over under duress. She had never been fond of my mother and my mother has always been somewhat afraid of her. She can be very mean to my Mom. But I felt hospice would be watching over her. Within two months? My mother was dead. When I arrived back home and started looking at the meds she was all of a sudden on. I was devastated. My sister had reported that she was showing signs of combative behavior at night. She wouldn’t sleep. She was very confused and didn’t know who people were.,
I then look at meds being prescribed, it’s lorazepam and amitriptyline. The lorazepam was 4 times a day. OMG was my reaction, my mother is so sensitive to med’s one Tylenol Pm is to strong. I even doubted that those behaviors were even happening. The hospice nurse came three times a week and my mother always exhibited these strange behaviors when with my mother.
The physical therapist is saying in his notes that my mom is doing well but daughter is saying she is confused and losing her bladder functions. He is concerned that she is declining so quickly. Then she apparently is complaint of severe arm pain from a very old broken arm injury. Now they have her on a fentanyl patch. Now she is not able to get up is so confused she doesn’t recognize anyone. This nurse seems alarmed and thinks the down hill slide is a reaction to fentanyl because she is also a little shocked at how fast this has happened. The problem is there is more than one nurse and other nurses who are extras and do not have the patient all the time is not in the loop of where she was and where she is now. So she takes her off fentanyl and prescribed Morphine. And has upped the dose of alprazolam to 2 tabs twice a day. I’m not getting any of this info until I’m called and told she wouldn’t be alive in two days.
I fly home immediately and ruin to her bed. She cannot even open her eyes or talk. She tries, she managed to say, I have something to tell you, very garbled, but couldn’t say it. I was sobbing and devastated, they said she was dying if Terminal anxiety. I got some juice in a cup with a straw, she sipped it right up, they were not giving her liquids. I also had fed her chunks of popsicle, she opened her mouth for me and ate it up.
I stayed with her late into the evening, I kept saying she so drugged. Why??? And my sister said she wasn’t she was just dying, I had to go home that night but when I said I was leaving and would be back early, she scrunched her face up like she was in pain, bi kissed her goodbye and she managed to get I love you out.
It was the last words she spoke. She was dead the next morning,
Now that my sister is gone, I found the hospice logs and the day I arrived to her, my sister had written down that she gave her 5 doses of morphine and lorazepam and morphine. Twice she gave her doses when I was away on another room for a few minutes, only one hr apart. She was not in any pain and why would she need to.
Then I looked at the slow progression of her being medicated over two months and she was dead,
My question is this. Do the nurses just take family members word for the behavior. Do they never second guess and just treat accordingly because hospice is about dying. I believe my sister fast tracked my mother to her death, she killed her and used hospice to do it.
Who do I go to to explain their relationship and why I was so afraid to leave her. Now I’m so guilt ridden, she would have been alive a few more years. I want to say something to the hospice nurses but I just don’t know how to handle it,
I’m so sorry it’s this long. Please advise..
Debbie
Nicole Didyk, MD says
I can understand feeling guilt and deep grief over what happened, and I’m sorry you had such an awful experience.
When an older adult is in a hospice or on a palliative care plan, there is usually frequent assessment and charting in order to track symptoms and responses to medications. Sometimes family members are asked to monitor and log symptoms as well, and a nurse or physician can give instructions based on what’s reported, but it would be unusual for this to not be integrated with a plan to have the medical professionals do their own assessments. It really depends on the resources that are available and the family’s capacity to manage things at home.
There can be major fluctuations in alertness and communication as people are at the end of life. Sometimes a delirium can be a part of the picture, which produces lucid periods alternating with confusion and drowsiness or restlessness. And many of the medications used to relieve symptoms at end of life can have sedating side effects.
With a loss like the one you’ve experienced, I would recommend getting support and counselling, and many hospices have such resources for families. I wish you healing and peace.
Rein Dekker says
A question for your advice. From 2012 to 2018 I did field work with refugees in the Middle East. That was very demanding and I lost a lot of sleep over it and, on Medical Advice. took low dosage Stillnox/ Diazepam to help me sleep. I retired a year before my contract ended ( I am now 69 years old) because I began to notice memory loss. I have stopped taking it after retirement, I have now read somewhere that my memory loss / beginning Alzheimer might be caused by this prolonged use of Stillnox. I wonder if that is the case and -if so – is there anything I can do about it? Many thanks for your appreciated council !!
Rein Dekker says
I have an urgent question for your appreciated advice and councel. From 2012 to 2018 I did field work with refugees in the Middle East. That was very demanding and I lost a lot of sleep over it and, on Medical Advice. took low dosage Stillnox/ Diazepam to help me sleep. I retired a year before my contract ended ( I am now 69 years old) because I began to notice memory loss. I have stopped taking it after retirement, I have now read somewhere that my memory loss / beginning Alzheimer might be caused by this prolonged use of Stillnox. I wonder if that is the case and -if so – is there anything I can do about it ????
Nicole Didyk, MD says
Hi again Rein, and I notice that you’ve asked this question of us a few times already.
This is one of the best answers from Dr. K that you might want to review: https://betterhealthwhileaging.net/cognitive-impairment-causes-and-how-to-evaluate/#comment-5927
It seems like this issue is really weighing on your mind and I would suggest that someone in your situation see their family doctor about how to get some help and reassurance. Thanks for following the website and stay well!
Rein Dekker says
THANKS for your advice Nicole.
Cathy says
My husband has been on Aricept for four days and I have noticed short term memory worse. Also, his disposition seems not as pleasant. Does it take a few weeks to show improvement or should we stop med now since short term memory worse?
Nicole Didyk, MD says
It’s always difficult to know if a change observed after starting a new medication is due to the medication or something else. It could just be a coincidence that your husband’s behaviour has changes, or there could be another illness or environment change that is the cause.
I usually start donepezil (Aricept) or another cholinesterase inhibitor at a half dose for four weeks, then increase it to the full dose, then continue for three months before assessing the effect.
If a patient called me with this story, I would advise to try to hang on a little longer to see if the changes are really due to the donepezil or not. It would be unfortunate to stop it too early if that’s the case,