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My Mom has been on Namenda and Aricept which worked wonders for her mood and attitude. The doctor says they are no longer effective in slowing her cognitive decline because she is in the end stages of Alzheimer's. We are trying to decide whether or not to take her off these meds for fear her once difficult and unmanageable personality will return. However, these drugs can subdue appetite and she no longer has an appetite. We are in a quandary as to what to do.

I don't know what the dosages are like but perhaps the amounts could be slowly decreased to find a level that keeps her personality manageable and increases her appetite? Could be that as the disease has progressed, her personality could be different as well.
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Dexieboy Jan 27, 2019
Great reply. Thank you. This helped me, too, because I am at the same place with my own mother.
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End stages of Alzheimer's can produce changes in behavior, such as a decline of appetite. End stages of Alzheimer's are not reversible.
Do you visualize a point in her decline that you would call upon hospice to care for her?
Grace & Peace,
Bob
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From what I recall Namenda has to be "titrated" down. This means slowly withdrawn. When the drug was started a smaller dose was given and gradually increased this is how you should take a person off that drug. Ask the doctor about doing that first and see what her reaction is. If she can withdraw with no problems then once she is off that then you can discuss removing the Aricept. She can always start them up again if you really detect a change for the worse in her personality or mood.
It is funny when Namend was prescribed for my Husband with each dose increase he had a difficult time and his personality became worse. I finally discontinued it.
As for the Aricept it "works" to slow the decline in mild and maybe moderate. If your Mom is in late-mid or late stage the drug is not doing much. Is she on any other medication? If so I think those are what is helping more with her mood.
I noticed no difference at all when I made the decision to discontinue the Aricept for my Husband. I did that when he went on Hospice. He did continue to decline for another almost 3 years. There were no changes that I could tell in his personality, mood, eating and the decline continued at about the same rate as previously.
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Reply to Grandma1954
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Leave her on the Medication. Taking her off now, Could have more of an effect than just loss of appetite. d Bless her and God bless you, dear.
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I agree .These medications do wonders. Family live with the patients so they know the difference while on medications and when not on (doctors do not live with patients).
Definitely these drugs help in their behavior and mood. Do not stop.
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Doctors say my dad is in the final stages, but no one is really sure. Because my dad had a traumatic brain injury, it may be dementia. My dad was on Aricept & tapered off. Then, was put on Quetiapine Fumarate 50 mg at night & when he acts up during the day. I crush 1/8 of tablet & put in applesauce. He calms down. At night, I use 1/4 of tablet. This works right now. My dad has a good appetite, but after giving him this rx, I don't give him anything to eat. When it wears off, he eats everything I put on his plate.
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Reply to dads1caregiver
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Ironically, I’ve had the exact opposite discussion with Mom’s geriatric psychiatrist. I’ve asked if she has reached a point where the meds are no longer making a difference and if we should discontinue them. He said there really is no way to know for certain when that point arrives, and if we discontinue the meds she could worsen with no way to retrieve the additional losses. He said he sees no harm in her continuing at this point. My mother is not yet in what I would call end stages though. I remember my grandmother’s end stages. She was infantile; completely non-verbal, needing to be fed puréed food and just responding with a reflex action to the spoon touching her mouth. The day she passed she was curled up in bed in the fetal position. These meds, of course, did not exist back then. It is so hard to know what to do, and not knowing the totality of your situation, I don’t feel right offering advice. I just wanted to share my experience in hopes it might help. Wishing you strength, comfort, wisdom, and clarity as you navigate this difficult journey.
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Reply to MelissaPA2AZ
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Decrease dosage slowly, just don’t stop. My 94 yr old aunt went on Medicaid, and Aricept was removed from her regiment .. I was not notified of this-until I received the drug bill the next month. Series of mini strokes. Her reg doctor was no longer involved once Medicaid took control.
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The responses you have received are helpful. My wife is at the End of Life stage after two years of Vascular Dementia and eight years of  Alzheimer's, but the definition of "End of Life" is "someone who could die in the next 6 to 12 months, but may live for years. I think at this stage you are dealing with the potent  combination of both pain and anxiety --two rather different responses that will require different medications. However, my experience is that people living with dementia tend to retain their personalities before dementia. If they were lovely, friendly people without dementia, they do their best to stay that way. If they were rather nasty to others before dementia that often continues, unless they are drugged up with medications that stop the nastiness coming out.

Everyone is different. Doctors do hesitate (rightly) to take someone off a medicine for fear they can not then bring them back up to the point they were when they came off. However, on balance, my experience is that at the End of Life stage, as one of these responses has said, Aricept is not making much difference. (It is generally thought to be effective for only two years, but few doctors will bring someone off.) My wife was on a similar medicine here in England; and I withdrew it several months ago, and it does not seem to have had much effect. One guideline that makes sense which a Consultant Psychiatrist said to me here in England was, "We only change medicines when there is some indication they are not working." If someone with dementia is often agitated and upset that often needs to be treated, which several correspondents have pointed out.

There is no single answer. You know the person living with dementia best, so
you have to seek advice, weigh up the options and then make (in prayer, I would
add) the best decision you can. I hope this helps.
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bigsun Jan 27, 2019
Dad became an ogre.. prob maximizing his previous personality... Unfortunately
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Agree with G1954, might be best not to go "cold turkey" off meds that have been
successful in managing mood/behavior, especially since it usually takes 2-3 weeks before the results take effect in the first place. Starting all over with something else, can be hard on everyone. Maybe encourage mom's appetite with healthy snacks she might enjoy?
Since my mom's been on Namenda, her appetite isn't as big as before, but her weight is still good, and she snacks here & there.
Best wises
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My mom was already in the advanced stage of dementia/alzeimers when the change in her primary doctor. The new doctor picked up immediately on mom's mental decline and started her on drugs. NO they did not help her mental decline. WHAT they DID DO tho' was take away her middle of the night wanderings, and living in another time and space. My husband and I are her 24/7 caregivers. I was running on very little sleep because of these middle of the night ordeals. Now the only time she wakes up is to go to the bathroom. Granted she may be confused, but she is no long near combative that she needs to help her dad at the barn do chores. If I tell her to go back to sleep, she may ask the same question, but she will stay in bed. I think from our experience stay on them.
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bigsun Jan 27, 2019
Thank you
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when my dad got that bad he was put on hospice. From what we understood, once you are on hospice they will not administer these kind of meds, only using comfort type meds, etc. You didn't say anything about hospice, but we did not notice anything different when he was taken off the ALZ meds. I think they slowed decline initially but by the time he got that bad I don't think they helped anymore anyway. I would trust the dr. on this, but is it possible to get a second opinion. Was this dr. the neurologist? If not, maybe you could ask the neurologist that had been treating him, assuming there was.
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My experience with a current client and the usage of Namenda, once it was temporarily stopped the mood did change, and appetite was suppressed. The safety concerns that came with the sudden mood changes is why I recommended to the son, who is a Neonatal Physician and Educator that it was beneficial to restart the Namenda, we added, Ensure shakes (mixed with ice-cream), Bolthouse protein shakes, and other food supplements to make up for when meals went untouched. With Alzheimer's it could also be that the ability to remember to eat could also be the cause of, what appears to be appetite suppression, being that Alzheimer's causes the loss of the ability to perform normal tasks, such as picking up a utensil, or what should be done with what is in front of them. Nutrition can be altered as I mentioned, but physical safety was put first, and we worked on the appetite adjustment, but the mood change is no longer a issue since going back on the Namenda. I would suggest trying it for a period of time and see if the mood changes go away or are reduced, while adding or changing meal choices to things that can supplement
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My Father wants Mother on Aricept again and sent me THIS thread entitled -"Namenda and Aricept: we are in a quandary as to what to do". I do see main differences with that article and my mother's situation. First Aricept has NOT worked on Mother - just the polar opposite of the patient in the article. That patient had “late stage Alzheimer’s” and Mother doesn't have Alzheimer's, per se, now the neurologist says... she has very mild vascular dementia. That dementia has not progressed however she has declined physically, mentally, emotionally and spiritually having been zonked-out for these past few years on Aricept. Nevertheless, Father believes your article supports his 'treating' her with Aricept again. It will kill me to have to stand and watch this happen to her again. Aricept has contributed to a devastating decline in Mom's life!
Aricept side effects have caused severe debilitation, sedation, disorientation, severe and prolonged dizziness, diarrhea, dehydration, incontinence, blurred vision, etc. Incidents of heart attack, and reduced lung function, UTIs, violence, etc. Increased frequency of emergency responders to the home, hospitalizations and ER visits for falls, electrolyte imbalances, complete strength and muscle decline. Mother has been fading into the sheets the past few years on Aricept because Father falsely believes, "the Aricept is CURING her Alzheimer's". Father as husband has the legal right to "drug" her using her doctor’s prescription while he refuses to tell doctors the extent of the side effects, fearing they will stop prescribing. Even the Aricept drug manufacturer's information states that “Aricept will NOT CURE Alzheimer's” and discloses these side-effect along with others.  The Aricept side effects have been severe until (perhaps fortunately, 2 months ago) Mother had a heart attack. The hospital rehab doctor quickly realized her heavily sedated, lethargic - less than low energy level and incontinence issues were not caused by the heart attack. Realizing these were side-effects of Aricept the doctor a rehab specialist advised stopping the Aricept and told us to dispose of it all in order to get her awake and hopefully ‘up’ again. Mother has been off Aricept the past 2 months and not a zombie!!!! She can sit up and converse now!!! She is no longer a pile of flesh laying in feces! She quickly responds with, "hello" when we come in. She likes food again. She's not mean, in fact very polite - like her old self again!

Mother needs to be allowed to detox and be permitted to live without these drugs and their side effects. Father should allow Mother to take advantage of some of the many non-pharmacological recommendations to help Mother; especially regarding the sleep issues, improve sleep patterns, improve nutrition, cognitive stimulation, encourage exercise, or physical therapy, balance therapy ; or allow doctors to help her investigate to see IF any of these things could help her. Aricept is not good for Mother and I truly enjoy having her off the drug!
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Thank you for all your thoughtful responses. My mother is on hospice care and it was the hospice doctor who made the recommendation to take her off these drugs. I would feel most comfortable with her former neurologist's advice,
who at one time, told us to inform hospice to keep her on the drugs. However,
he has now gone in to the research field and is no longer with the practice and
I can't make contact. My mother, in about the last two months, has basically quit eating after a slow process of tapering off what she ate. She now weighs about
70 lbs. She has always been small (about 120) and had a small appetite. Most articles I read suggest that it is Aricept rather than Namenda which suppresses appetite. I doubt she can regain her strength now that she is at this stage but I can't escape the feeling of "what if we're starving her to death because of drug side effects?" My sibling is very averse to taking her off the drug because mother had been very difficult prior to taking it. I feel I have been very attentive to her on this journey and have no regrets other than my angst over this. The wisdom of Solomon is what I need but I do believe in prayer and will continue to pray for whatever direction I can discern is best.
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GraceLPC Jan 28, 2019
The key is benefit vs side effects. If Aricept may be reducing her appitite, then try taking her off, and discuss something that might help appitite...like Prednisone...on a trial basis.
I suspect that either or both of these Rx are more effective in keeping her calm and compliant, than the sedation they might otherwise use. Hospice is about quality end of life.
Do feel free to get a second opinion. These are newer drugs, the doctor may not be as familiar with their end stage benefit on mood. Perhaps less supressing of CNS. These questions need to be addressed before a change is made.
May God Bless you all!
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You should ask her physician this question that you are in a quandary about. I don't profess to be a medical professional. My SIL is on Aricept for early onset A;zheimer's and her dosage was just increased. Horrible disease.
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Reply to Llamalover47
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Mood is a very important aspect of Health, quality of life and a measure of the patient's well being. ALZ is a disease that has both direct and secondary effects on mood, it's intensity (during Sundowning, for example), and her care plan.
If she is not suffering adverse side effects, there is no reason to take her off the medication. Get Doctor and Nursing notes on her mood and take her to a Geriatric Psychiatrist if needed to have him verify for insurance the fact that she is still benefiting from these drugs.
Also talk to both doctors about how dosage should be adjusted when they become less beneficial.
Should you try a higher dose. What is safest schedule to reduce dosage to do controlled discontinuation considering all of her health factors. Should any other medications be adjusted at that time?
Again, the words "no longer beneficial" will trigger insurance not to cover. Work with your doctor, ALZ Assoc., Geriatric Psychiatrist, and other medical staff to show she is still benefiting!
When she is no longer benefiting, or side effects she experiences outweighs benefits, then step her down off the medicines.
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Reply to GraceLPC
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Hello
Can I ask what your mothers condition is like? Does she still walk? Can she talk more than a few words in a conversation? Is she incontinent? Is she able to feed herself? Those are all things that suggest someone is end stage Alzheimer’s with 6 months or less to live. Along with infections, pressure areas, difficulty swallowing, weight loss etc. A lot of times once we discontinue unnecessary medications for a patient their conditions improve. I think the less medications an older person takes the better it is for their appetites also. All medications have side effects and the more you take the more likely you are to have some. If she really is in end stages then I would suggest stopping the medications, because as the doctor said they likely aren’t helping. Usually once someone is end stage their behaviors have pretty much resolved. Is your mother at home or in a nursing facility?
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Reply to HospiceRN14
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Thank you all for your kind and thoughtful responses. My mother passed away about a month ago. I wish you all the best in this very difficult journey.
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Reply to gypsyfeet51
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I'm sorry to hear of the loss of your mother. I see that your posts about the medications was from January. Things are so unpredictable. Thank you for the update.
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