Medical Forum / Diseases and Disorders / Alzheimer's / November 2006
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Charlie - 11 Nov 2006 23:18 GMT My wife, age 85 was diagnosed with mild AD this week after some recent memory loss. She has been in reasonably good health. She was referred to a neurologist who specializes in AD and he came to this conclusion after an MRI and other tests in his office. He has suggested she enter a three month group experimental program to test a new drug that is conducted nation wide and paid for by a pharmaceutical co. quite an involved program and we don't understand it all yet but do you have an knowledge as to any benefit to her regarding her future health.
Alan Meyer - 11 Nov 2006 23:49 GMT > My wife, age 85 was diagnosed with mild AD this week after some recent memory loss. She > has been in reasonably good health. She was referred to a neurologist who specializes in [quoted text clipped - 3 lines] > we don't understand it all yet but do you have an knowledge as to any benefit to her > regarding her future health. I'm sorry to hear about your wife's problem. It is difficult and trying. Perhaps the fact that she made it to this age before having real problems is a good thing - indicating that the disease is advancing only very slowly.
I have no information about the particular clinical trial you are considering.
I was in a clinical trial for a cancer treatment run by the National Cancer Institute. It was a very positive experience in a number of ways. One was that I got more pre-treatment testing, and more time with serious experts, than I would have had in regular treatment. I also got very good follow up care. Three years later, I still get follow up care from them.
In my particular clinical trial, I thought the people I dealt with were a cut above the ordinary medical practitioners from the point of view of understanding the science of my disease. They were also more thorough in their testing of me because they had to establish what my disease parameters were as carefully and accurately as possible in order to know what effect their treatment had.
Finally, although I didn't know if the treatment would work or not, I liked the idea that someone would learn something from my treatment that might help others.
Best of luck to you and your wife.
Alan
Mary_Gordon@tvo.org - 12 Nov 2006 03:03 GMT Charlie, if this is a research project, normally these are done as double blind - so not only will you never know if your wife has had the new drug (and she may not get anything but a placebo), the researchers who evaluate her and interact with you will never know whether she got the drug. If they know, they can be biased when they evaluate her, and ruin the results of the study.
You join a research project to help future generations, not to help your loved one - right now, what she CAN benefit from are the drugs and drug combinations that have already been shown to have some effect.
If it were my spouse, with time so short at 85, I'd go for the sure thing - I'd ask the doctor for a galantamine-memantine combination therapy - every day is precious now, and you want to slow this disease down as possible to keep her with you and herself as long as possible.
Mary
Alan Meyer - 12 Nov 2006 07:29 GMT > Charlie, if this is a research project, normally these are done as > double blind - so not only will you never know if your wife has had the [quoted text clipped - 13 lines] > > Mary Mary
What you say here has much truth to it. But I'd like to qualify it.
In many studies the participants _do_ find out whether they got the drug or not - though they will not find out until the evaluations are complete. In some studies, if the study shows that the drug is successful, the patients who received the placebo may have the option of switching to the real drug at the end of the evaluation period - getting access to it before it is generally available to others.
Charlie can ask about this and will be told in advance whether this will be the case.
In some new drug studies, the number of people getting a placebo may be less than the number getting the drug. There may, for example, be three or four groups - one with placebo and others with different dosages of the drug. Charlie can ask about this too and will be given full information about the assignment of people to treatments.
In addition, not all studies require that no other drugs be given. The study may or may not allow patients to take galantamine- memantine in addition to the experimental treatment. I was in a prostate cancer radiation study where patients were allowed, at their option, to also take androgen deprivation therapy. Some studies suggested that ADT contributed to longer survival rates and the study investigators felt that, in good conscience, they should not forbid its use.
Finally, although I think it is a good idea to try the drugs you recommend, it is my understanding that they don't actually slow the progression of the disease. What they do is help alleviate the symptoms, allowing the patient to function at a higher level in spite of her disease progression. And they don't work for all patients. They are very far from a "sure thing". So taking those drugs may or may not give as much benefit as the investigational drug (though of course the patient might not, as you say, get the investigational drug.)
Clinical trials are never conducted with secret protocols. There is a law in the U.S. that requires total disclosure in great detail of all of the procedures to be used in the trial. Charlie can ask for, and should receive, detailed, written information about the trial process, and should get good answers to any questions, including the excellent questions you raise, about the nature of the trial.
There is a general feeling among the public that clinical trials researchers are a heartless bunch of scientists who treat people as laboratory rats, not really interested in what happens to the patients.
I did not find that to be true in my experience. Quite the opposite. I believe that the doctors who treated me were trying their hardest to cure my cancer. That was three years ago and, knocking on wood, I think they may have done it.
Alan
Evelyn Ruut - 12 Nov 2006 12:33 GMT >> Charlie, if this is a research project, normally these are done as >> double blind - so not only will you never know if your wife has had the [quoted text clipped - 74 lines] > > Alan Nonetheless Alan, I would still go for the sure thing, rather than take any chances at all on being the one who isn't getting anything (placebo).
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Evelyn (to reply to me personally, remove 'sox')
Alan Meyer - 12 Nov 2006 16:46 GMT > ... > Nonetheless Alan, I would still go for the sure thing, rather than take any chances at > all on being the one who isn't getting anything (placebo). > ... I can certainly understand why people would feel that way. But I would at least ask the clinical trials researchers (they usually have an 800 number that gets a nurse who is familiar with the details of the study) whether the patient is allowed to take Aricept or Memantine while on the study. It is possible that they are.
And again, although we can get the "sure thing" in the sense of being sure we're taking a real drug with Aricept and Memantine, we don't have a "sure thing" in knowing it will help. Some are helped, some aren't.
Yet another option is to get the Aricept or Memantine and try it for a month. If it doesn't appear to have any effect, then go for the clinical trial.
My Dad and my Mother-in-law both took Aricept with no effect that anyone in the family could perceive. Both continued to deteriorate. In my MIL's case, she had some severe side effects that forced her off the drug after a month or two.
Alan
Mary_Gordon@tvo.org - 12 Nov 2006 17:14 GMT I don't for one second think researchers treat people like lab rats - however, given that evaluation of cognitive impairments can often have some subjectivity, particularly over a relatively short time like three months, the evaluator and the patient shouldn't know the treatment protocol they are assigned to, and they mustn't be taking other drugs in this case, or the results are meaningless. This is particularly true when the drug therapies both available and in develolpment often have subtle rather than dramatic effects (ie.. when we can't reverse brain damage, but only support brain function, what does "good" mean? Incrementally better? Not worse?).
Its hard enough to track changes in a person with early dementia - after all, are they just having a good week? Are they plateauing? Is it the other drug therapy rather than the one meant to be trying that is helping them a bit? Or maybe they had a bad day when they were tested the first time? Certainly family members are not always able to give a neutral opinion on how their loved one is - so many families see what they wish to see, or hope to see.
Double blind in cogntitive drugs isn't cruelty, its protecting the science for everyone's benefit. Drug trials to deal with dementias can't be run like drug trials to treat cancer - in those cases youu are measuring something you can test with physical parameters (i.e. either the tumour is smaller or it isn't, either the blood levels of a marker are the same or different).
M.
Alan Meyer - 12 Nov 2006 18:59 GMT >I don't for one second think researchers treat people like lab rats - > however, given that evaluation of cognitive impairments can often have [quoted text clipped - 23 lines] > > M. Well, I can't argue with any of that. You're probably right that the patients in the trial will not be allowed to take other drugs - though it's still worth inquiring. You're certainly also right that measuring progress is a whole different kettle of fish from measuring progress in cancer treatment.
But I would like to bring out one more aspect of this that needs discussion. We in this newsgroup frequently lament the dearth of useful drugs for Alzheimer's disease. At the same time, we do our best to discourage patients and caregivers from the clinical trials that are needed to develop those drugs.
The clinical trial that I was in was conducted over a period of three years. The scientists conducting the trial initially hoped to enroll 30 patients. Later, they reduced their goal to 18. In the end, they never made it. Interestingly, the treatment seems to have been successful, but it didn't matter. Despite the fact that there were thousands of cancer patients in the vicinity of Bethesda Maryland, and despite the fact that many of them were probably destitute and getting minimal publicly funded care, arguably one of the finest cancer treatment centers in the world could not recruit 18 of them for outstanding and totally free treatment.
I don't know whether the treatment I got is a significant improvement over other treatments or not, but if it is, it's going to take longer for it to become known and available to the community at large because the trial was never able to be completed.
In an earlier post you said "with time so short at 85, I'd go for the sure thing." I could not make a decision for anyone else on the same basis as for myself, but I'd like to think that when my time becomes so short I would be attracted to using that small remaining amount for the benefit of the people I left behind. I would know that, in at least one sense, that would be the "sure thing".
Alan
June - 12 Nov 2006 13:53 GMT Depending on the cause of the dementia, drugs don't always make a difference. I saw no change if my mother was taking Aricept or not. She knows all her family and grandkids and even remembers the teenage son of one of my daughter's friends. Yet she doesn't know the year, how old she is, who is President, etc. Just saying there are two sides to the drug thing. Maybe something new would have helped early on in some way, but after more than 12 years she still functions at this level without drugs for the most part. I know she wouldn't have wanted the quality of life that she has now. Like a 4 or 5 year old. At least I know she isn't suffering---that's for the ones who remember who she was ...June
> My wife, age 85 was diagnosed with mild AD this week after some recent > memory loss. She has been in reasonably good health. She was referred to a [quoted text clipped - 4 lines] > and we don't understand it all yet but do you have an knowledge as to any > benefit to her regarding her future health. Charlie - 12 Nov 2006 21:10 GMT >> My wife, age 85 was diagnosed with mild AD this week after some recent >> memory loss. She has been in reasonably good health. She was referred to [quoted text clipped - 4 lines] >> program and we don't understand it all yet but do you have an knowledge >> as to any benefit to her regarding her future health. Thaks to all for the input, she had pretty much decided not to go for the program but I was looking for more info as whether to try to influence her otherwise. We are just getting over the shock from last week and I think she is still in denial since her friends tell her they don't think she has AD, it is very mild yet and they don't see the small signs by being around every day. She has never been one for details and would just as soon not get involved as the saying goes, that is why I'm on the computer and not her. Due to our age we may not have to go through it too long. Will check with the Dr. this week and let him know our decision and see what he recommends. Thanks all from sunny Central Ca.
Evelyn Ruut - 12 Nov 2006 22:49 GMT >>> My wife, age 85 was diagnosed with mild AD this week after some recent >>> memory loss. She has been in reasonably good health. She was referred to [quoted text clipped - 22 lines] > and see what he recommends. > Thanks all from sunny Central Ca. Hi,
My mother in law's friends all were in complete denial of her illness, even when it became so very obvious. I don't envy your situation right now. It is all still too fresh in my memory, even though she has been gone for a year and a half now. Whatever, do keep in touch here. It was a godsend to me to have friends on this newsgroup all through our journey with alzheimers.
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Evelyn (to reply to me personally, remove 'sox')
Mary_Gordon@tvo.org - 13 Nov 2006 23:10 GMT Evelyn knows, my mother in laws friends and her sister were exactly the same. My mother in law's personality was intact far into the illness, and socially, she seemed exactly the same. Her main contact with friends were visits, and phone conversations, and it was very easy for her to "fake" her way through a great conversation without actually imparting any information that could lead to anyone suspecting she was having trouble with her memory. She was vague and charming, and knew all the right empty phrases to say (when all else fails, comment about the weather!!). Her friends would also not realize that she couldn't use appliances, work the TV, do her shopping, get to appointments, take care of her domestic chores etc. etc.
Her friends and sister also encouraged her to believe she was fine and we were nuts, being mean when we insisted she see the doctor. They collectively believed that it was NORMAL to get forgetful. Her sister in particular was big on this idea....and we shortly found out why she had so many good examples to offer her sister - she had AD too (diagnosed much after Dolli's, but progressed much faster and killed her sooner).
M.
Alan Meyer - 14 Nov 2006 00:13 GMT My mother was outstanding at "covering" her illness. She had highly developed social skills and they stuck with her long after her memory and logic skills had seriously deteriorated.
She went to a department store once with my Dad and saw a help wanted sign. She applied for the job. She couldn't fill out the simple application form and needed help, but in spite of that she was hired! My Dad had to intervene to explain to the store manager that she really couldn't work for him.
Alan
A R Pickett - 14 Nov 2006 14:29 GMT Alan wrote - > My mother was outstanding at "covering" her illness. She
> had highly developed social skills my father, also, is expert at "masking" his confusion and disorientation. "Masking" is the term used by the clinic staff at the apt house where he lives. He doesn't fool most of the clinic staff for a minute. A great many of his friends among the other residents either (1) don't pick up on it or (2) realize what's going on and accept it.
We think the latter reaction is in part a defense mechanism "If I pretend it's not happening to Joe, it's not happening (or never will happen) to me." Also a heavy dose of courtesy, which is not a bad thing.
Not sure about his social skills, which might never have been that highly developed in the first place. His inability to adjust his hearing aid, and its resulting repose in his desk drawer probably has a lot to do with that.
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august - 14 Nov 2006 06:30 GMT > Thaks to all for the input, she had pretty much decided not to go for the > program [quoted text clipped - 13 lines] > and see what he recommends. > Thanks all from sunny Central Ca. It's rare that anyone with dementia thinks they need to see a Dr for anything. The only time our LO mentioned she might need to see a Dr was after her appendix had burst. Small things like a back ache or UTinfection or anything else are always "cured" by the same thing - her crawling into bed and waiting for us to figure out what the real problem is.
Because many of the AD drugs can cause nausea and loss of appetite you will need to weigh the negatives vs potential benefits. Sometimes they don't add up to being a good choice. There are just not any simple answers when dealing with AD. good luck with your journey, AW
Evelyn Ruut - 14 Nov 2006 11:12 GMT >> Thaks to all for the input, she had pretty much decided not to go for the >> program [quoted text clipped - 24 lines] > don't add up to being a good choice. There are just not any simple answers > when dealing with AD. good luck with your journey, AW Our experience mirrors your own, when it came to any discomfort of any kind. (the creeping into bed and waiting for us to figure it out). The only thing different for us, was that we noticed a marked improvement in her level of cognition, with drugs. Without them she was nearly a vegetable. We did always make sure she took her Aricept after dinner though, to minimize any gastro-intestinal stuff.
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Evelyn (to reply to me personally, remove 'sox')
Chuck Whealton - 23 Nov 2006 19:43 GMT > Depending on the cause of the dementia, drugs don't always make a > difference. I saw no change if my mother was taking Aricept or not. She [quoted text clipped - 15 lines] > > and we don't understand it all yet but do you have an knowledge as to any > > benefit to her regarding her future health. June, my Mother also saw no benefit with Aricept, or Excelon. It was believed that her dementia was due to a series of mini-strokes. However, she did see a major benefit with Xyprexa. If it wasn't for that drug, we would have had a lot less time with her. I know there have been some recent items in the news about Xyprexa. All I can say is that it helped us greatly.
Charles R. Whealton Charles Whealton @ pleasedontspam.com
June - 24 Nov 2006 02:57 GMT What kind of benefit? No offense Chuck and I know you mean well, but my mother has had dementia since the fall of '93. Unless a medication can reverse it, I see no reason for drugs. We think the mini strokes may be the problem but it really doesn't matter now. She's not psychotic, she has a very sweet disposition. She's 87 and her mind is slowly leaving her. Extend her life? To what end? Extend her life until something more catastrophic takes her? Dementia has taken her mind, her personality, and literally everything she was. I'm sorry to sound harsh but am I missing something here? Since I was a kid, my mother always made it clear not to prolong any incurable illness she might face and I respect that. Ok after thinking it over, I thought I should delete this and not post it, but I can't believe I'm the only one who feels this way....June
P.S. My 5 year old grandson asked me why old people become babies again and I had no answer.
> June, my Mother also saw no benefit with Aricept, or Excelon. It was > believed that her dementia was due to a series of mini-strokes. [quoted text clipped - 5 lines] > Charles R. Whealton > Charles Whealton @ pleasedontspam.com Chuck Whealton - 24 Nov 2006 03:33 GMT > What kind of benefit? No offense Chuck and I know you mean well, but my > mother has had dementia since the fall of '93. Unless a medication can [quoted text clipped - 21 lines] > > Charles R. Whealton > > Charles Whealton @ pleasedontspam.com Actually June, I was simply agreeing with you that pharmaceuticals DON'T do it for everybody and that certain pharmaceuticals that help some may provide no benefit for others. It was for the benefit of the new poster (Charlie?) who was asking for information.
As for your Mother's conditiion, if she's got a nice disposition, then you're very lucky. Whereas I do not like to go into specifics about how my Mother was towards the end, I will say she didn't have a nice disposition and I was about to throw the towel in. Both Aricept and Excelon made her ill and Excelon with another well known anti-psychotic made the condition worse. Excelon and that other anti-psychhotic were what my Mother was on when I was just about to give up.
Xyprexa had the opposite effect and helped us out greatly.
I wasn't saying you should put your Mother on anything. You're very lucky that she's got a decent disposition. That's a long time for a person to suffer from dementia, let alone still be responsive.
My Aunt was diagnosed with alzheimers (months after my Mother died) and was dead within two years after my Mother died. Her husband, who began going down the tubes at the same time (pics disease?), didn't last much longer....
Charles R. Whealton Charles Whealton @ pleasedontspam.com
June - 24 Nov 2006 03:56 GMT I can see the necessity of medication if it helps deal with psychosis and I realize that happens more often than not. Mom's just different. About all drugs make her sick and I'm so glad it's not necessary. I guess I got carried away on my soapbox......June
>> Actually June, I was simply agreeing with you that pharmaceuticals > DON'T do it for everybody and that certain pharmaceuticals that help [quoted text clipped - 22 lines] > Charles R. Whealton > Charles Whealton @ pleasedontspam.com Chuck Whealton - 24 Nov 2006 04:33 GMT > I can see the necessity of medication if it helps deal with psychosis and I > realize that happens more often than not. Mom's just different. About all [quoted text clipped - 27 lines] > > Charles R. Whealton > > Charles Whealton @ pleasedontspam.com June, if you can ever say "lucky" and "dementia" in one sentence, it seems like you've been reasonably lucky. I've never encountered anybody who's had a loved one that's suffered from dementia that long, let alone with the person still in a somewhat managable state.
I hope it continues to work at least that well for you and your Mother...
Charles R. Whealton Charles Whealton @ pleasedontspam.com
Evelyn Ruut - 24 Nov 2006 12:20 GMT >I can see the necessity of medication if it helps deal with psychosis and I >realize that happens more often than not. Mom's just different. About >all drugs make her sick and I'm so glad it's not necessary. I guess I got >carried away on my soapbox......June June, every situation is different, and I am so glad for you and your mom that she doesn't need any meds. My mother in law would have been in a nursing home a lot sooner if it were not for drugs. They kept her calm and acting more "sane" for a long time, allowing her a better quality of life for her last few years. We tried lots of different things, but the best quality of life for her was with the meds. She was deeply depressed and Zoloft helped that a lot. Then when she began having disturbing delusions the doc put her on Risperdol, which calmed her reaction to the delusions. As her illness progressed the meds were actually reduced.
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Evelyn (to reply to me personally, remove 'sox')
Tumbleweed - 24 Nov 2006 09:34 GMT > What kind of benefit? No offense Chuck and I know you mean well, but my > mother has had dementia since the fall of '93. Unless a medication can > reverse it, I see no reason for drugs. How about the extra 2 or so years (I estimate) that my father had of reasonable quality life at home, compared to being *in* a home? How about the much easier life my mother had for those 2 years, compared to dealing with a much more difficult person?
FWIW we are *all* suffering from an incurable 'disease' , its called life and most of us try and prolong it! Some at all costs,and some only while the quality is whatever we would deem acceptable, but I think you have maybe missed the point that these drugs *can* (nothing is guaranteed) add extra years of quality life which benefits both the sufferer and the carer.
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Evelyn Ruut - 24 Nov 2006 12:22 GMT >> What kind of benefit? No offense Chuck and I know you mean well, but >> my mother has had dementia since the fall of '93. Unless a medication [quoted text clipped - 11 lines] > extra years of quality life which benefits both the sufferer and the > carer. I stand with you on this Tumbleweed. My mother in law would have been in a nursing home shortly after diagnosis had it not been for the medication, which did indeed give her a nearly "normal" life for a few more years. I have NO idea how we would have coped with her awful delusions otherwise.
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Evelyn (to reply to me personally, remove 'sox')
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