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 Discontinuing Aricept and Namenda 
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Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
Post Discontinuing Aricept and Namenda
It seems that a lot of CGs wrestle with when and if to withdraw Aricept and/or Namenda from their LOs so I thought maybe my mother's recent experience might be of interest.

For several months, my mother (87 y.o., dx and in an SNF since 2/2010, probable onset at least 2004) has been increasingly anxious, agitated and weepy. She has been unable to engage in her usual pasttimes for over a year (reading, knitting, listening to the radio or to books on tape) so there has been little for her to enjoy except walking the halls and sometimes television. Her most recent MoCA (Montreal Cognitive Assessment, similar to the MMSE) score is down to an 11, and it was taken on a day when she was pretty sharp.

Most recently, she has also deteriorated in memory (short- and long-term), ability to speak (stammering, inability to find words) and confusion. She started getting very agitated if anything went wrong--toileting accidents, aides trying to help her with ADLs (which she still resents), unable to remember things, unable to express herself. One of the RNs commented that my mother seems to be aware of, and very distressed by, her mental decline, and fighting to hang on. It was very hard to see her so distressed so often. The only thing that calmed her down was Ativan, and the nurses don't like to give that because it is considered a chemical restraint.

After considerable discussion, my mother's doctor discontinued her Aricept two and a half weeks ago. (She had been on 5 mg./day since February, 2010.) I had been apprehensive about this but have been very pleasantly surprised. It has resulted in an improvement in her demeanor in that she is less agitated and anxious. She does not seem any more confused than before. And she has not needed Ativan.

This week, the doctor began weaning her off of Namenda. It will take a month to D/C it completely. I am hoping that this also will help with her agitation and anxiety. It is so sad to see her failing but what a blessing if she can at least be calm and comfortable.

Julianne


Fri Aug 12, 2011 3:10 pm
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Joined: Fri Dec 31, 2010 3:07 pm
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Location: Minnesota
Post Re: Discontinuing Aricept and Namenda
Thank you so much for sharing your journey.

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Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Fri Aug 12, 2011 6:27 pm
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: Discontinuing Aricept and Namenda
Julianne - based on my experience with my dad, I know why you are doing this and think it can be the best option for our LOs in some cases.
Back when my dad became so debilitated a social worker/counselor I was meeting with told me that the only good thing about dementia was that eventually he would be in a "lala land" state. As his mind faded, he did become much calmer, less angry & aggitated, but obviously cognitive abilities declined.
Without my knowledge or consent he was put on Namenda and Aricept. For a short time he "brightened" cognitively but his aggitation level and aggression rose with his cognitive improvements. This made him and everyone around him in a worse state that he had been. This was when I tried to get him taken off these drugs because they were making him more distressed because he was so aware of how bad off he was.
I wish he'd never gone on the drugs, I wish the drs. and CNP had discussed this treatment and what to expect with me, the POA, and I wish I hadn't had to fight to get him off the drugs. I am very glad your mom's drs. are listening to your reasons and agreeing to wean her off the drugs. Why would anyone want their LO MORE aggitated and aggressive if that were the result of these drugs? We didn't want that for our dad and it turned into a real battle, including his CNP threatening to sue me for wanting to take him off these drugs.
It can be very difficult to advocate what we think is best for our LOs sometimes, but you gotta do what you gotta do. I hope your mom continues to be less aggitated even if her cognitive decline gets worse. It is a delicate balance. Lynn

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Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Sat Aug 13, 2011 10:39 am
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Joined: Sun Aug 29, 2010 5:46 pm
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Post Re: Discontinuing Aricept and Namenda
Thanks, Lynn. I agree, it is hard to make these decisions. There are no ideal choices. But it is a relief for my mother not to be distressed, angry, hysterical and weeping.

I am so sorry that you had such awful problems with the medical staff for your dad. It makes me very grateful that my mother's doctors and the SNF nurses work with the family to do what is best for her.

Julianne


Sat Aug 13, 2011 11:42 am
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
Post Re: Discontinuing Aricept and Namenda
It is so important for me to read of others' experience discontinuing dementia drugs. I'm wondering if Derek would have needed the extra Seroquel for agitation and combativeness if he had been taken off the Exelon patch. Most neurologists seem to think they need to stay on these drugs even if there seems to be no benefit. :cry:

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Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Sat Aug 13, 2011 12:15 pm
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: Discontinuing Aricept and Namenda
Yes, that was certainly our experience Pat. And even worse than "no benefit" was increased aggitation which they didn't seem to give a wit about. Months of increased aggitation, combativeness, hitting any hard surface he could find splitting the backs of his hands open, scratching and hitting the CGs made no difference at all to the CNPs and the psychiatrist. As long as his speech and thoughts were occasionally clearer, that's all they cared about.
The only thing that ever made me feel better was the day I fired the psychiatrist! Then the CNP who apparently was his friend, retaliated by putting my dad BACK on some of the meds they'd finally taken him off of. :x :cry:
If I had the past couple of years to do over, I'd have moved my dad here against his wishes before he got so bad that we couldn't move him, and gotten him better medical care and we'd have been able to see him every day. Lynn

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Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Sat Aug 13, 2011 12:25 pm
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Post Re: Discontinuing Aricept and Namenda
Right, it can be much more than "no benefit." I am convinced that Aricept was doing something that made my mother anxious and hysterical. Moreover, she started getting nasty with the aides. That behavior has stopped since the Aricept was D/C'ed. What a relief.

Julianne


Sat Aug 13, 2011 12:45 pm
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Joined: Sun Oct 21, 2007 4:18 pm
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Location: Acton, MA
Post Re: Discontinuing Aricept and Namenda
When Frank's Dr eliminated the Exelon I mentioned that I'd read once on it you never stop it. He said he couldn't see any point of taking a med that wasn't helping, I was OK with that.

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Gerry 67, cared for Frank 71, married 49 yrs; dx 2004, passed away October 26, 2011.


Sat Aug 13, 2011 3:05 pm
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Location: Vermont
Post Re: Discontinuing Aricept and Namenda
My dad's psychiatrist said the same thing about Namenda & Aricept - once on you never stop. I asked him if he wanted to pay for it and if he had ever seen the backs of my dad's hands which looked like raw hamburger all the time. And if he'd seen my dad hit and scratch the CGs. And get really nasty with me and everyone else.
All this dr.ever did was come in, look over the paperwork, keep prescribing the same thing that wasn't helping and was probably making my dad worse. Then he'd bill as much money in the 30 seconds he reviewed the chart as he would have if he'd done and hour of therapy. No wonder our health care is in such bad shape. People like him just rip off the system and the rest of us are all paying for it.
OK, I'll get off that soapbox for the moment. Phew, I feel better! :lol:

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Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Sat Aug 13, 2011 5:54 pm
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Location: Minnesota
Post Re: Discontinuing Aricept and Namenda
I hope it is a small minority, but I agree, there is a lot of ripping off of the system going on -- and it isn't the patients doing it!

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Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Sat Aug 13, 2011 6:21 pm
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Post Re: Discontinuing Aricept and Namenda
I don't know that all drugs are the same as far as going off and back on. Maybe you can't go back on Exelon but I don't know it's true of Namenda and Aricept. (Anyone who is contemplating this obviously should seek competent medical advice.)

In fact, a few years before my mother went into the NH, she was already on Namenda and I had to take her to the ER for mild dehydration. The ER doc told me to wean her off of the Namenda because it might be contributing, so I did. Within a couple of weeks, my sister and I could see a significant cognitive decline so I just reversed the process and put her back on it. She recovered her previous cognitive function without a hiccup. (Of course, that was before her LBD dx and I had no idea what I was doing! Her PCP had just said she had "dementia" and started her on Namenda.)

Before discussing this with her doctor, I also have done a lot of reading on line about people's experiences with going off of these drugs, and some people reported resuming them without an issue. I don't know the correct medical view because I didn't inquire. I had no intention of restarting my mother on them. But, as Lynn points out, the medical view isn't always oriented toward the patient's best interests, either.

Julianne


Sat Aug 13, 2011 6:33 pm
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: Discontinuing Aricept and Namenda
We do what we think is right, advocate for our LOs and that's about all we can do. I'm glad your mom is responding well to the d/c-ing of her meds. I think some drs. think "one size fits all" and we know how well that works with women's clothes, right? :lol:

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Sat Aug 13, 2011 8:07 pm
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
Post Re: Discontinuing Aricept and Namenda
Julianne,
Thanks for reporting on your real-life experiment with discontinuing these two medications. In general, I have read that the rule of thirds applies -- a third of patients do better when the med is removed, a third have no reaction, and a third experience decline when the med is removed. It's impossible to know which third you are in before the discontinuation. So glad to hear that things are working out for your mom!
Robin


Sun Aug 14, 2011 11:16 pm
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Location: WA
Post Re: Discontinuing Aricept and Namenda
Robin, if that is true then there is little justification for so many neurologists keeping their patients on these drugs year after year since only 1/3 appear to be benefiting from them.

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Mon Aug 15, 2011 12:03 am
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
Post Re: Discontinuing Aricept and Namenda
Yes, but think if you were diagnosed tomorrow with "early dementia." Would you want to be started immediately on an AChEI or Namenda? If we could afford it and found the side effects tolerable, probably many of us would "gamble" that the medication might benefit us.


Mon Aug 15, 2011 12:54 am
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