Gorlin Asked October 2015

How can you tell if Alzheimer's meds are helping?

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My husband's doctor asked me if I think the meds are helping. How can you know what it would be like if he was not taking them? Is the quality of his life better? Beats the heck out of me. There seems to be some question as to exactly what these meds do. I will have to discuss this further with his doctor. From what I read, it is supposed to help with cognitive and other emotional issues. Does is still help prevent further damage to the brain? I've read that ultimately death comes when the brain stops telling the body how and when to function and slowly shuts down. Is that true? If so, do the meds prolong the brains ability to control the physical functioning of the body? If so..than doesn't that mean that the meds prolong life? Arghhh. Making decisions for someone u love so much....is an awful part of life. But have Alzheimer's is even worse!!! Wish I had all the ethical and moral questions clear in my heart.

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EXPERT Carol Bradley Bursack Oct 2015
The ongoing question, Gorlin - how do we know what our loved one would be like without the medications? From what I've read, most doctors think that the medications help slow the development of symptoms for about 30% of the people who take them. There are variations on this, but you get the drift.

Balance that information with the side effects some people suffer from and it's not always an easy choice. I've heard from people who feel that the meds have been a miracle. I've heard from people who've witnessed side effects that completely negate any good that the drugs may do.

Talk over your concerns with the doctor. If you do decide to go with the drugs, remember that there is a time when the drugs are no longer effective, so in essence, more drugs simply mean more negative side effects.

We all wish there were clear cut answers to these issues. The fact that there aren't is probably one of the hardest issues to fact. Working closely with the doctor is vital. You may want to keep a journal of daily (hourly?) moods and behaviors so that you have some track record for comparing.

Take care, Gorlin , and please update us when you can. This is a problem faced by a large percentage of caregivers in this community.
Carol
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KneeDeepDD Oct 2015
How can you tell? I know how I can tell. When my husband does not take it, for some reason or another - within the same day, he turns into a monster I cannot be near. One supposed top notch expert he saw for 30 minutes who gave him 1 psyche test (not all the others due to have because it had been two years since he had them...) and refused to communicate with me or consider the journal I've kept that other doctors greatly appreciated) gave him the green light, telling him he had no sign of Alzheimer's or FTD, (contrary to doctors who'd treated him 10 years, diagnosed 95% certain FTD, and finally had meds tweaked so he could live at home). Ecstatic and grateful that the new doctor (a memory clinic director) had "freed him" and given him a "new lease on life," in his supposed excellent executive functioning state, he quit his Alzheimer meds. Within the same day, he became very confused, was verbally abusive, had no patience with anyone and within days, couldn't get out of bed and was so suicidal, we needed emergency care. Months later now, I can tell if he's neglected taking his meds and avoid him until he does and they have time to help. (Yes, med reactions differ patient to patient. And yes, drug profiteers are nasty, but so are specialists, such as the memory clinic head who caused so much grief due to his neglect, I almost lost my husband.) Thank you for asking, and all the best.
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Smschaff34 Oct 2015
My mom, who has been living with me,also has Alzheimer's. She was diagnosed through an all day evaluation at a local memory clinic. She had a base-line test on the first day. We also had to fill out an extensive symptom/history background. She gets retested every six months on various tests. She has been on Aricept shortly after that visit. Her tests showed that she has remained steady in her scores. Some were a notch down and some were up, but they remain pretty steady. I believe my Mom's disease has slowed down. Six months ago they wanted to add Namenda, however when she reached the 28mil dose she was literally and figuratively NUMB. She digressed from conversation, her balance was getting worse, and worst of all she could not hold her urine or even feel the sensation. Since she was taken off NUMBenda she returned to her old self. She does have bad days as well as good days. Hope this helps.
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camussen Oct 2015
akdaughter, my husband is only taking Namenda. For the short period of time that I took him off it, he was just completely muddled, and totally didn't know what he was doing. When I put him back on it, his demeanor seemed to level back out.
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gladimhere Oct 2015
The meds supposedly slow the progression, and help to manage behaviors. I have had the same question, how do you know. Actually, you don't. All you can evaluate is whether it is a situation that can be tolerated. If not then different meds are tried. Then finally you find the ideal med regimen, they seem like they are getting on better. Then comes another change in behavior and start the trial and error of new meds all over again. They have taken these meds for so long, you wonder if they are doing anything at all other than filling pockets of the pharmaceutical companies. Since behaviors are manageable/tolerable then something must be working and we become afraid to stop the meds.

That is all that can really be evaluated. Do they seem to be feeling better? That is the primary goal of the meds. We all know our loved ones certainly would not be able to judge, at least in a way that required them to reason out their decision.
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camussen Oct 2015
My husband, who is now 76 years old, has had ALZ now for 10 years. The doctor put him first on Aricept but he had such bad side effects, he quit taking it. He's been taking Namenda now for years, with no side effects. But, our doctor said it's obviously not helping so he could discontinue it. I took him off it, and in one week's time there was such a difference, it scared me. So I put him back on and it seemed to level the progress out again. Maybe different meds work for different people.
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gladimhere Oct 2015
KneeDeep, you sure went through it and many others have as well! If it takes medication, hopefully everybody can find a doctor that is able to help, then that is what is necessary to improve the quality of life for everybody! Good job!
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Alexander4 Oct 2015
My husband has taken Aricept since shortly after his diagnosis of Alzheimer's, or FTD. We have no way of knowing how things would have been if he hadn't been taking it, but will continue taking it, having faith that it is slowing things down. If he gets to a point where it's obvious it isn't helping, then we will stop.
I agree, this is a horrible position to be in, having to make these kinds of decisions and many more. Hang in there!
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rojo1215 Oct 2015
You can't ever prove something like this. There is no way to compare your husband's response to the meds versus no meds. The studies they've done on the meds allow comparison of control versus treated groups. There you can see if the drug has a statistical impact. But on an individual basis, no, you'll never know. I guess some folks get a noticeable bounce from the drugs but others just get worse slower. Our neurologist feels the drugs work best when the disease is caught in the early stages. Mom is in the late portion of stage 6 (7 is the end). We just started the drugs. Since stage 6 includes a general awareness and ability to interact I want to keep her there as long as possible. So we'll play the long odds and take the drugs regardless of whether or not they're working. At least the doc's said they wouldn't do her any harm. This is a terrible disease. It's sad when you start wishing for most any other death to come take its place.
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Salisbury Oct 2015
Tarajane,

I can feel your relief and joy. when my mom's switch flipped, I was incredulous with relief. I still am and it is almost a year now.
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