Nov 062007

I know a widely-respected neurologist at a prestigious, teaching hospital who once said,

“Treating dementia is like rearranging the chairs on the deck of the Titanic.”

And he’s not alone in the medical community with this philosophy. I’ve heard many stories of doctors, both neurologists and general practice physicians, who are reluctant to prescribe treatment for Alzheimer’s Disease. They believe that the current drugs available don’t make a difference. They believe the current drugs are not cost effective.

Aricept and Namenda do not cure Alzheimer’s.
They do not stop the progression of the disease.
The cognitive capabilities of everyone who has Alzheimer’s Disease will get worse despite taking these medications.
No one gets out of Alzheimer’s alive.

But what about quality of life? What about the value of making each day a little less foggy, less frustrating, less isolated, less stressful for as long as possible? What about living as fully as possible with whatever time you have?

Do doctors not bother to prescribe calcium channel blockers or statins to elderly patients with heart disease because they’re likely going to die soon anyway? Are patients with cancer denied surgery, chemotherapy, or radiation if it’s known that these treatments will only buy time before the cancer ultimately kills them?

In the diagnosis and treatment of any patient, doctors have been trained to measure and quantify. Cholesterol levels are measured. There is a number. Blood pressure is taken. There’s another number. Patients are given medication, and doctors look to these numbers to evaluate whether the treatment is working. The number changed. The treatment worked.

There is no dementia protein that can be measured in the blood. There is often nothing visible in a brain scan. There is no number physicians can point to that can measure discrete changes in cognition. A doctor can’t put a patient with Alzheimer’s on Aricept or Namenda and then in six months say, “Things look great. We see a 25% decline in the accumulation of amyloid beta in your brain.” Or, “Wonderful. Your glutamatergic neurotransmission is up significantly.”

But just because there’s no numerical index of biological improvement that can currently be measured, it doesn’t mean the improvement isn’t there.

We’re all on the Titanic. We’re all going to die. For those of you with Alzheimer’s disease who are taking an Acetylcholinesterase Inhibitor (Aricept, Exelon, Reminyl) and/or Namenda, do you feel like you’re just pointlessly rearranging the deck chairs?

Tell us what you notice about your capabilities and mental health while on these medications. What value do these drugs have for you? Caregivers, tell us what you notice.

What do we know without knowing any numbers?

Lisa Genova, Ph.D., author of STILL ALICE,

  10 Responses to “Treatment Without Numbers”

  1. I take my Rx meds, all three of them: Exelon, Namenda, and Lipitor. The data that the meds don't help in the long run is based on studies that are a few years old, and were done on people who tended to be older, were dianosed when they were further along, weren't done for longer than a few months, and weren't done on people taking the combination cocktail of drugs. There have not been any studies, at least that I've seen, of younger people diagnosed with Alzheimer's while still in the beginning of Stage 3, Mild Cognitive Impairment, who took the drugs over a long period of time. So I'm taking mine knowing that we simply don't know what the benefits will be, with some hope for the best. I believe they're keeping me going, good days and not so good ones.But I'm also doing a three-legged stool of strategies that science is beginning to show can "prevent" Alzheimer's. Prevention is a perennially confusing idea, because is often used to describe dealing with people "at risk" who already have "mild cognitive impairment." So "prevention" may ultimately prove to be "disease modification." Those strategies, in summary, are 1) aerobic expercise and mental exercise, 2) healthy diet and nutritional supplements, and 3) stress reduction, including meditation, three support groups, creativity (music, including mandolin and chorus), connection to family, continuing education/lifelong learning, and service to my community. Dr. Dean Ornish of UC San Francisco proved starting more than 20 years ago that his three-legged program of 1) exercise, 2) diet, and 3) love and intimacy (basically the same as mine, above) was a more effective therapy for treatment of heart disease than any drug or surgical treatment – his recovery rates were better than the conventional treatments. After adopting it myself, I understand that he's taken the program to diabetes, and more recently, to Alzheimer's. I'm not waiting for the studies to come along in 10 or 20 years after I'm gone. If you are watching Alzheimer's on the web, you have already seen that science is starting to tell us that these approaches are beneficial for the prevention (and, I believe, slowing the progression of) Alzheimer's disease. I tell people to read David Shenk's book "The Forgetting" to find out all about Alzheimer's, and to read Dean Ornish's books and do his program to DO something about mitigating Alzheimer's. Just do the program, science will eventually catch up. I'm taking each and every supplement listed in the recent NIA/NIH "2005-2006 Progress Report on Alzheimer's" as currently in clinical trials. Each one is believed to do some good, or it wouldn't be in clinical trials. Don't wait for the results. Oprah's show yesterday cited India's lack of Alzheimer's as being due to turmeric/curcumin in their curry. Dr. Oz asserted that doing whatever you do passionately, with conviction, putting the word our, and telling others about it was good for our health.That's why I'm an advocate for early diagnosis and intervention. I postulated last year that one day we would be diagnosing people in the earliest stages of the disease, even in Stage 1 "no symptoms". Last week I sat on a panel with leading scientists/researcers at a press conference and was amazed to hear them say precisey the same thing – calling for earlier and earlier diagnosis, developing the imaging tools and surrogate biological markers to make it possible, so people could routinely come in for a test to determine if they have the pathology, even years before first symptoms and significant neurological damage. Finally, this disease is not "clinical." It's about living our lives, and taking responsiblity for them. It's about enjoying living fully while we can, making good choices for ourselves and our families. I'm having a great time living, loving, playing, learning, and contributing.Jay Smith – wantland.smith@sbcglobal.netdiagnosed 2005; co-chair, recent Early Memory Loss Forum; member, Alz Assoc's Early Stage Advisory Group

  2. There is a problem with the perception people have, concernig Alzheimer's disease. A diagnosis of Alzheimer's is treated much like a death notice. People DIE from Alzheimer's! Many people die in car wrecks, but nobody tells them to stop driving cars.Many Doctors don't want to tell the patient the truth about Alzheimers because there is no cure. Did they not tell women of what was uncurable breast cancer, because there was no cure? Do the family members of Breast Cancer patients tell the Doctor not to tell the patient? Or, say "dont tell us what is wrong with Mom". I don't think that one of these scenarios would happen with any other uncurable disease. The truth is that many of us diagnsosed with Early Stage Alzheimer's disease are doing quite well. Living, and enjoying our lives after diagnosis. "Why?" you may ask. Because those of us who are using Namemda, Aricept or any of the other Medicins labled for Alzheimer's, find that they work very well for us. These meds have slowed our progression, encreased our funtionality and ability to think clearly. With out them I was falling, my brain fogged all day, and losing my speech. After I was diagnosised, my Dr. started me on Namenda and Razidyne plus supplements. I quit falling, my cognition returned, and am able to speak very well. I have been on these meds for three years, now.I admit that progression is on going in my brain. I have bad days and epeosodes, and maybe I can't spell as well as I once did. I am still driving, (my insurence agent knows my condition) I still recognize my directions accuratly. I know there will come a time when I will be unable to live as I do now. But isn't that true of all all people, not just us with Alzheimer's?The thing I have noticed about my friends with Alzheimer's and myself, is that we did not go into denial. We have become pro-active about our disease and actively fight it as well as we can. We are active in our communities, with the Alzheimer's Associations and other organizations that we can be of service to. We have not rolled over in self desrtuctive, self pity. Our care partners support and work with us in staying as high functioning as we can. They do not pity us, they tell us we are brave and do their best to understand what is like to have this disease. There is no reason not to continue living! Life is good, and never perfect. What we do not need is pity,and/or denial from our Doctors, Family members and the community. What we do need, and require, is better medications, understanding and acceptance from our Doctors, our families, and our communies to fight this battle we have on-going in our brains. Don't take anything away from us, but encrease our ability to fight this disease for as long as we can.Stop the denial, accept the reality that Submission to death is inevetable, but surrender is NOT acceptable. Today, I am still HERE! Today! Stand HERE with me. Only together can we find a cure

  3. Well said, James and Chuck!!! I totally agree and practice every strategy that you do!! (Piano instead of mandolin) I know and have proof that it is making a difference in the progression of my EOAD! My PET scan repeated this past July showed NO progression of AD in my brain, and in fact, some improvement from the one of May 2006, and if Dr. Genova would like to be privy to those to reports, I'd be happy to share them with her to validate my positive successes and improvements from early intervention drugs, supplements and strategies! Thanks, James and Chuck, for speaking-up for those of us that "see the glass as half full."Linda BlackMS Edage 56EOAD diagnosed May '06OKC, OK

  4. Which is why the biomedical model of dementia is not sufficient. "Managing disability and enjoying life: How we reframe dementia through personal narratives." That's the title of a paper just submitted for publication to The Journal of Aging Studies by Renee Beard, Jenny Knauss, and Don Moyer. The lead author is a geriatric sociologist who used methods she's been polishing in similar dementia research to analyze narratives from persons living dementia, narratives which Jenny and I collected last January by email. Renee concluded that the narratives show that these persons: have meaningful lives which could be further enriched; accommodate dementia into their lives; see dementia as a beginning rather than as an end; preform the emotional work of managing their disabilities; creatively construct meaning, order, and selves; are – and insist on being seen as – individuals having continuing personal stories.The view shown by these narratives is quite different from the typical biomedical view of dementia and should be incorporated into dementia care, planning, practices, and policies.

  5. well said ! Jay, Chuck, Linda, don moyer ! the life is even a Titanic for all of us on this earth … we'll have to die a day or another … but we and the whole society are responsable of our quality of life.

  6. Namenda was the first the first Px I started on being diagnosed with AD a year plus ago. Nearly a year later I added aricept. I didn’t notice much change when I started and continued on the namenda until I added aricept. I said namenda must be working cuz I was getting no worse (it kept the elephants away). Then I added aricept and wow! The cognitive acuity that returned was remarkable! The acuity has continued into the 5th month since starting. I was in to see the neurologist with whom I treat. He said he believes the mix of the two are responsible for the salutary effect I experienced. I am early stage. This week I visited a close friend in an assisted living facility who is mid stage. He was on aricept, they added namenda to his soup-mix and he experienced a significant decline. They stopped the namenda and he came back quickly. This is all anecdotal of course, and each person’s chemical biological universe tolerates medication differently. The articles I read say both Namenda and Aricept are only temporary in their relief. If that is correct I hope they are a long time temporary. I am in no rush to get any worse! Regards, Mike Donohue

  7. i am a 47 years young i was dia nosed with early alzheimers about three months ago . i started aracept about two months ago. i have nothiced i think more clearly now but before i didnt care about things that matterd it was like i was lost couldnt find my way home in my mind but i knew where i was and whom i am. i loose my words alot and my body shakes more now than it did but i am still here ,living my life trying to keep my memories alive it hard some times but i think to my self get your self up and push forward no one gonna do it for you have 4 children 3 grandchildren and one on the way . i know i want to be here for them aricept might not be a cure but sure helps me keep going in my life yes i have mood swings yes i cry . but if it means that i have one more day to do what i can and to have memories of my family and friends then bring the meds on yes at first i didnt want the meds . they scared me ! because i didnt know what to exspect . but take my meds away and i wouldnt be here in my mind .i know this because i was leaving before . so do i have gloom and doom in my life no i dont have time an i think that most people with this feels the same way…….. sorry for the spelling but you know thats me …..i live with this saying just keep on smiling and hug any one you can .its a good thing. maggie

  8. Interesting to know.

  9. I hate that analogy of the titanic, unfortunately it is true there are many physicians who feel that way, even if they don't admit it to anyone or themselves. I am a physician, who has treated many people with Alzheimer's over the years. One thing to understand is that physician's are human like everyone else. Alzheimer's is not just a medical problem, it is a social problem that is the attitudes we have towards it are influenced by social mores, popular culture the media etc. The practice of medicine has become very politicized and watered-down. The ancient archetype of the physician healer will always be, the physician-patient trust and therapeutic alliance has been around forever. Our society and popular culture has done just about everything it can to destroy this. The "business" of health care has very little to do with the physician patient alliance. The business of health care has been brought about mostly by non-physicians working in health care, who never will really understand what this alliance is about. However these business people weigh heavily on the physician and create profound pressure on the doctor. It wrecks the alliance. The media would simply like us to believe that this is simply about the doctor trying to make money. It isn't. Remember 99% of the time doctors do not get to set a price for the service he or she provides, unlike any other goods and services we might desire or acquire in the United States. If a doctor is not willing to aggressively treat or prescribe available modalities to slow the decline of the disease, it is simply because he or she has colored perceptions and biases, and mostly because they have not confronted their own issues and fears. They are human just like you. The apathy of "well it is a fatal disease anyway" has been slowly and insidiously beaten into many doctors over the years. Utilize you resources elsewhere etc. It has been beaten into them by the business of health care and our society that glamorizes youth and beauty. The business people of health care, I guarantee you do not like the concept of Alzheimer's disease. You can look at the disparity and punishment economically you receive by the current system, because you or a loved one has Alzheimer's compared to some other potentially fatal disease.

  10. I don't know any doctors who went into medicine to hurt people or increase suffering, contrary to popular belief. Most started out and still want to help others not to suffer. We almost expect our doctors to mess up, to make a mistake, to not care; we perpetually wait for that to happen. Our profound mistrust of physicians is juxtaposed with a timeless trust we still inherently want to place in our healer. My mother was diagnosed with Alzheimer's in 1979. It was not a household word then. I was just 17 years old the youngest of six and I was her primary caregiver for two years. My family and I would have taken any option for treatment to have her with us for one more year or month or week or minute. The meds we have developed and have been signed off by the FDA as approved for Alzheimer's are far from perfect, but they are something. Cognex, Aricept, Exelon, Namenda, Razadyne, we would have wanted something for our mother. I try to aggressively treat patients with Alzheimer's, many doctors do. It is the right thing to do, maybe some families or patients don't want it, but when it is explained to them, most do. Remember your doctor did not make you or your loved one get Alzheimer's, but if they are reluctant to treat ask them why. If they still won't, ask them to refer you to someone that will treat. There is NO good reason not to treat. The worst that happens is that the med or meds are not tolerated well or they don't help much. The best that happen is the disease process slows significantly. There is no reason not to try. Remember that healing quality is in the physician's blood, it is a way of life. I can't emphasize the responsibility almost every physician assumes to help their patient. In almost every specialty it is a way of life. It is a part of your doctor. Don't give up, remember the doctor is human but we demand superhuman sometimes, no doctor went into medicine to hurt people, in a system that destroys the physician-patient alliance, some have just lost there way. For every dramatic story of a non-caring jerk doctor we hear there are 1000 others stories (some happening right now), of good caring doctors that we don't hear much about. How can we not be suspicious? I hear people constantly say you need an "advocate" when you go see the doctor. We set up an adversarial relationship sometimes. To me the first and foremost advocate for the patient and family has always been and always should be the doctor,

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