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.
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?
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.
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.
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!
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!
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
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.
Definitely these drugs help in their behavior and mood. Do not stop.
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.
Do you visualize a point in her decline that you would call upon hospice to care for her?
Grace & Peace,
Bob