She has been on the medication for three weeks now. Wondering if any of you have used this drug for your loved one with dementia and if so, what was your experience? Did it help or did it make things worse?
My sister recently discontinued donepezil 5mg at my request. She was having disturbing, vivid dreams, and constant urge (4-5 times an hour sometimes) to urinate during the day - (negative for UTI). Within days of stopping donepezil, therse symptoms also stopped. I detected no change in her thinking or memory or ability to function. Unfortunately, doctors cannot guarantee any of the dementia meds will actually work. I initially thought it worth a try, until side effects outweighed questionable benefit. Hope this helps, but as others have suggested, it is very individual to each dementia patient. Best wishes.
My husband was on it and it helped for about a year … after that Namenda was added and helped with sharper thinking as well. No side effects … these meds helped but only for short while … I think it slowed progression of his Lewy body dementia but nothing stops the progression… I felt I needed to try anything to make him more comfortable aware and less confused. Of course they don’t work same on everyone … there’s nothing else so what have you got lose..this cruel disease only goes one way .. best luck
My husband was on Donepezil for almost 13 years. I mentioned to a fellow support group member a strange new behavior and obsession of fecal hoarding. She replied, "Aricept. Tell your doctor to stop prescribing it". My husband's neurologist said it does happen, and since Aricept was no longer helping my husband stopping will stop this new behavior, and it did.
I agree with Funkygrandma59. Prolonging this disease is h*ll. Expensive, isolating, caregiver's health and life destroying h*ll.
My DH aunt was on Aricept for several years and also Namenda. For a while she was on a combo drug of Aricept/Namenda (Namzaric). We changed it depending on which her insurance would cover. Her doctors wanted her on it and she usually wanted to do what they requested. We felt it helped her because she stayed fairly stable for a long time. Her biggest problem is she lost mobility. It was hard to know if it was helpful. No side effects noticed. Do watch your mother’s pulse. Aricept slowed aunts. It returned to a normal level after we stopped it. Currently I’m giving a lot of credit to Wellbutrin as it seems to really help her mood. Each patient is different.
My husband has been on it nearly two years. He has Frontal Temporal Dementia. Haven't noticed any side effects-yet. He's also on 12 other meds....so...who knows when/if there will be changes. All that the health care providers can do is symptom management. There is nothing else. My friend's father had Alzheimers-phenobarbital really calmed him down and stopped his screaming-and this was two years ago. Other people get Xanax, Valium, Haldol (yes, Haldol is still around) even Vicodin are a few meds that come to mind. Although a lot of dementia symptoms are similiar, there are so many variations in the symptoms because every brain is wired differently. Depending on what people are comfortable with as far as treatment is concerned, it may take a few tries to find the right combination of medication to manage dementia symptoms. I'm ok with medicating symptoms. As with pain management in cancer, I think there is a comfort factor to be considered. As long as the person is resting comfortably, not agitated, not screaming, and the medication(s) are able to sooth the brain, it is acceptable for me to have this for my husband, because, as stated earlier, there is nothing else.
My mother has been taking the 5mg pill for about a year now. My sister and I noticed a marked improvement in the "clarity" of her thinking once she was on it. We both knew that it was a temporary stopgap and would not stop the disease. My mom eventually started to forget to take it and it was obvious in her cognition changes-thinking became even more confused, confabulations, etc.
She moved into AL 1.5 weeks ago. I believe that the meds allowed her to live alone in her own home for the last year. Without it she would have been in AL much sooner. As her MPOA I have agreed with her doctor that we will not move up to the higher dosage and will discontinue the medication when taking it no longer shows a positive benefit. My mom wants to fight this disease for as long as she can. She has no real side effects from it so if taking it allows her to "fight" it I see no harm in it.
I do agree with others that part of me doesn't want to prolong her suffering in the stage where she realizes she's losing her memory. But she's slowly moving through that phase even with the meds and finding her own, new reality.
In early stages these medications are supposed to slow the progression. That said if it works in the early stages it does not work forever and that is the tricky part. At what point do you discontinue the medication that may or may not still be working. There are other medications, newer ones that may or again may not work in slowing the progression. My Husband was on Aricept (donepezil) for many years. Another medication was added (Namenda) but we/I discontinued it as the side effects were not worth it.
Thanks for your reply! If she tolerates this medication, they are talking about adding a second. Do you mind sharing what side effects you saw that made you decide to not continue the second medication?
The only thing Donepezil will do for some(but not the majority)is slow that dementia process down, but often the side effects are not worth it. My husband was on it, and initially I thought it may be helping, but perhaps that was just wishful thinking as he had the most aggressive of all the dementias, vascular dementia and really there is nothing to slow down that or the other dementias as well. And really now in retrospect(my husband died in 2020), why would anyone want to slow down the progression of any of the dementias as it only makes it harder for the person suffering from it and those who are caring for that person, as there is only one outcome from the horrible disease of dementia and that is death. I wish that until someone finally finds a cure for dementia that doctors would quit prescribing medications that don't help or work and often make things worse. All it does is give folks false hopes.
Thanks for your reply to my question. We are really struggling with this and I appreciate your viewpoint. I never really thought of it in that way, so thank you so much for sharing your thoughts!
Did absolutely nothing for my step-mother who has FTD.
My understanding is that if caught early enough it may slow down the progression.
My husband died of cancer before we got to the point of knowing or not knowing if it was doing anything positive.
I would give it a shot, why not? You can always take her off the meds at any time.
She was having disturbing, vivid dreams, and constant urge (4-5 times an hour sometimes) to urinate during the day - (negative for UTI).
Within days of stopping donepezil,
therse symptoms also stopped. I detected no change in her thinking or memory or ability to function.
Unfortunately, doctors cannot guarantee any of the dementia meds will actually work. I initially thought it worth a try, until side effects outweighed questionable benefit.
Hope this helps, but as others have suggested, it is very individual to each dementia patient.
Best wishes.
try anything to make him more comfortable aware and less confused. Of course they don’t work same on everyone …
there’s nothing else so what have you got lose..this cruel disease only goes one way ..
best luck
I mentioned to a fellow support group member a strange new behavior and obsession of fecal hoarding. She replied, "Aricept. Tell your doctor to stop prescribing it". My husband's neurologist said it does happen, and since Aricept was no longer helping my husband stopping will stop this new behavior, and it did.
I agree with Funkygrandma59. Prolonging this disease is h*ll. Expensive, isolating, caregiver's health and life destroying h*ll.
Do watch your mother’s pulse. Aricept slowed aunts. It returned to a normal level after we stopped it. Currently I’m giving a lot of credit to Wellbutrin as it seems to really help her mood. Each patient is different.
All that the health care providers can do is symptom management. There is nothing else. My friend's father had Alzheimers-phenobarbital really calmed him down and stopped his screaming-and this was two years ago. Other people get Xanax, Valium, Haldol (yes, Haldol is still around) even Vicodin are a few meds that come to mind. Although a lot of dementia symptoms are similiar, there are so many variations in the symptoms because every brain is wired differently. Depending on what people are comfortable with as far as treatment is concerned, it may take a few tries to find the right combination of medication to manage dementia symptoms.
I'm ok with medicating symptoms. As with pain management in cancer, I think there is a comfort factor to be considered. As long as the person is resting comfortably, not agitated, not screaming, and the medication(s) are able to sooth the brain, it is acceptable for me to have this for my husband, because, as stated earlier, there is nothing else.
She moved into AL 1.5 weeks ago. I believe that the meds allowed her to live alone in her own home for the last year. Without it she would have been in AL much sooner. As her MPOA I have agreed with her doctor that we will not move up to the higher dosage and will discontinue the medication when taking it no longer shows a positive benefit. My mom wants to fight this disease for as long as she can. She has no real side effects from it so if taking it allows her to "fight" it I see no harm in it.
I do agree with others that part of me doesn't want to prolong her suffering in the stage where she realizes she's losing her memory. But she's slowly moving through that phase even with the meds and finding her own, new reality.
That said if it works in the early stages it does not work forever and that is the tricky part. At what point do you discontinue the medication that may or may not still be working.
There are other medications, newer ones that may or again may not work in slowing the progression.
My Husband was on Aricept (donepezil) for many years. Another medication was added (Namenda) but we/I discontinued it as the side effects were not worth it.
My husband was on it, and initially I thought it may be helping, but perhaps that was just wishful thinking as he had the most aggressive of all the dementias, vascular dementia and really there is nothing to slow down that or the other dementias as well.
And really now in retrospect(my husband died in 2020), why would anyone want to slow down the progression of any of the dementias as it only makes it harder for the person suffering from it and those who are caring for that person, as there is only one outcome from the horrible disease of dementia and that is death.
I wish that until someone finally finds a cure for dementia that doctors would quit prescribing medications that don't help or work and often make things worse. All it does is give folks false hopes.