Treatment Without Numbers
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?
“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?
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Anna
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Sep 11, 2012 08:27PM
The neurologist told my mother that they did see changes in her MRI consistent with people of her age.
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Just recently, my Dad's primary care dr and neurologist told us they recommended eliminating Aricept & Namenda completely as they were no longer adding value. He has late stage Alzheimer's/Dementia & has been taking them for 3+ yrs. However, I have also heard that when you do that, the patient crashes. Not sure that my siblings agree, but I see that possibility as a mixed blessing since his quality of life is greatly diminished now. So, another question is, what about the end of life stage... given the progression of this disease, is there a bell curve to the benefit of these drugs?
My Dad was on Aricept, and then on Namenda - I think the Namenda did make a difference, though it is hard to assign a number to it. To your point about the deck chairs on the Titanic, though: my dad was lucky enough not to die of Alzheimer's, but of an aneurysm instead. I imagine many patients with dementia die from other causes, and I was relieved that my dad's dementia seemed relatively stable for the year before he died. He was very close to the point at which he would have had to go to a nursing home, which would have completely devastated him and made his dementia instantly much worse. I believe that the drugs helped him stay at home until his death. Surely that is worth doing. Further, many dementia patients are treated with drugs like Risperdal, which help control psychosis and stabilize mood - which, again, can help the caregiver to maintain at-home care, which is much better for the patient. It is interesting that doctors view dementia patients as a "lost cause," but do not see, say, obviously terminal cancer patients that way, and in fact often continue heroic treatment (with concomitant quality of life deterioration) long beyond the time when it is adding value.
When my Dad's dr. put him on aricept, he told Mom not to expect a miracle. I don't live close (FL) and they are in PA so I don't see his everyday progression. Mom told me one day he was in the living room holding the cats food because he couldn't remember where they ate. That upset me. You can talk to him and every once in a while he will lose his thought or not remember a word. When he was in rehab after the Dec. stroke I called him everyday and we had a conversation that was understandable. But truthfully his brain has had a lot of trauma. He's 81, has had 2 strokes, one this past Dec. When he was 36 and 42 he had a brain aneurysm. First time he was in a coma for 9 days. When he was stable they took him to Johns Hopkins. At that time where it was located it wasn't possible to operate. Now it could be coiled but he refuses. I too had an aneurysm at 54 that was coiled. In all, 6 of us in the family on grandmom's side have had them, 2 whom didn't survive.I do genealogy and got my great grandmothers death cert. but haven't gone back further to see which of her parents side it comes from. Now grandpop had alzheimers to the point of not having a clue who anyone was. I saw him in July and he was telling some really off the wall stories while grandmom is shaking her head behind him "no". But he was still grandpop. And then he got terribly mean with her to the point where she said thank God she could outrun him. It got to the point after running to the neighbors and calling the police, he had to be put in a nursing home and went downhill really quickly. The following May he passed away. I dread having this happen to my dad. I'm 56 and since the aneurysm my health has been really bad and I get really forgetful and it scares me. I don't get those terrible migraines anymore but sensory seizures/complex migraines. Topamax turned me into Dope-max. I'm taking Keppra which is working but still feel forgetful. 2010 was the aneurysm, 2011 was back surgery and this is the year of passing out. I would work in the yard and pull weeds and without warning pass out. Now I take florinef, salt tablets, can't go outside during the day, can't bend over. So I feel like I have no life, that I just exist and now this memory thing has me really confused and will see my neurologist in a couple of weeks. I would want to know if I were getting alzheimers. Quality of life means a lot to me and when I had the aneurysm coiled, I was more afraid of becoming paralyzed, severely brain damaged etc. more than I was of dying. Sorry, I didn't mean to write a novel here. I just get lonely sometimes and my poor husband is basically doing everything around the house and I hate to complain to him. Thank you for listening
I am a 55 year old woman who has been diagnosed with a cognitive/memory issue - all lobes of my brain are showing mild to moderate diminished activity - but the pattern does not match any of them. The good news is they say, at this point, it is not Alzheimer's. So I am on both Namenda and Aricept. When I asked the doc why I was on it since I didn't see any change his response was that it would not arrest it, but hopefully slow the decline down. So I keep taking it.
