Share this pageMedical Ignorance = Inadequate Alzheimer's Funding
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- Published on Tuesday, 08 February 2011 20:55
- Written by Stanton O. Berg
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Why has funding for Alzheimer’s always been pathetic and anemic when the Alzheimer's problem has been huge? Going back to 2008 an excellent article appeared in “The Saturday Evening Post” , September-October issue under the title of “Alzheimer’s Disease: Something’s Not Right With Mom ...and Now Dad.” The article by author Melissa Isaacson (An award-winning journalist and author.) was both touching and poignant. At the end of the article, funding was discussed.
“It is simply not on the national agenda. I don’t want to take anything away from cancer or heart disease to give to Alzheimer’s”…”but the heart, lung and cancer institutes are four times the size of the aging institute, and Alzheimer’s will soon be the most costly disease in the United States. Unfortunately, with this disease the outcry is not from people who have it. Breast cancer and AIDS patients have huge advocacy groups. People with Alzheimer’s are sitting in the corner.”
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“Major research changes need to be made”says LTC expert and .Nobel Prize winner Stanley B. Prusiner, MD, of the Institute for Neuro-degenerative Diseases at the University of California, San Francisco (AMDA - December 2010) …”Alzheimer’s is a “cancer-size problem”, Dr.. Prusiner said, “yet cancer receives 15 times as much funding as Alzheimer’s does…Congress must address this funding disparity and create an innovative, well funded strategic plan…Science cannot do this alone.”
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In an essay on ”Causes of Death”, science writer Ben Best,* writing in 2008 describes world wide causes of death as:
“The most common conventional causes of death in industrialized countries are (1.) cardiovascular disease,(2.) cancer, (3.) Alzheimer's disease and (4.) accident (in that order). Alzheimer's victims usually die of pneumonia, a lung condition or a cerebro-vascular condition -- so Alzheimer's victims are often declared to die of other causes.”
* Best is active in the field of Bio-gerontology. He holds undergraduate degrees inpharmacy from the University of British Columbia, and physics and computing science (BSc), and finance (BBA) from Simon Fraser University in British Columbia, Canada.
Best’s opening statement not only high lights the importance of Alzheimer’s as a major cause of death but also very clearly sets forth the problem error in recording the cause of death. It seems rather clear that this is obviously a major reason for the inadequate funding of research for finding the cause and a cure for Alzheimer’s disease. The number of deaths due to Alzheimer’s is grossly understated on official records.
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This simple statement is an explanation of how it is possible to have 450,000 new cases of Alzheimer’s each year (at an increasing rate) and yet have a U.S. Government “Causes of Death” report (CDC) that shows only approx. 85,000 annual Alzheimer’s deaths. Even this obviously error based number, still results in a U.S. national cause of death ranking of 5th among disease deaths. (2011 data.)
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My personal experience validates what Ben Best is saying. Both my mother Ellen and my wife June died from complications of Alzheimer’s but neither of their death certificates were completed correctly. Neither of the death certificates shows Alzheimer’s as the cause of death nor even lists it as a condition or a contributing cause. Both had been formally diagnosed with Alzheimer’s years before their death.
My wife June’s death certificate states cause of death to be “Aspiration Pneumonia” with other contributing conditions described as ”Dementia, Dysphagia”. (Difficulty Swallowing)
My mother’s death certificate states cause of death to be “Myocardial Infarction” No contributing or underlying causes are listed and “Other Significant Conditions contributing to death is left blank.” My formal letter to the doctor requesting correction was declined. A second letter was ignored. My mother had never had any heart problems during her lifetime and had the blood pressure of a teen ager. She was on no medications for heart related problemes and was not on any blood pressure medications. No autopsy was done. Below is a summary of her last days. She had been given a antipsychotic medication not approved by the FDA for use on elderly Alzheimer's dementia patients and in fact had a black box warning that this drug increased the chance of death by 100%. Heart related death was one of the reasons for the black box warning.
When I related this story to a friend, the friend then looked at the records of three of her ancestors who had passed on and who were all thought to have had Alzheimer’s. Again all three certificates were without mention of Alzheimer’s as the cause or a cause of death.
“My great-grandfather died from "Senility." My grandmother, way, way, way into dementia-Alzheimer’s, who could no longer speak, didn't know any of us any longer, died of "heart failure." My aunt, who no longer recognized anyone in her family ... died of heart failure. So you're absolutely right ... it isn't getting its dues as far as cause of death.”
On April 3rd, 2012 while having breakfast with my friend Dr. Don Fox (life long doctor and surgeon) who had lost his wife Gloria a short time before to complications of Alzheimer's, I mentioned the improper completion of Death Certificates and the resulting improper count of deaths due to Alzheimer's...later that day he checked the death certificate on his wife Gloria and found the following: "Cause of Death Immediate: Endstage Dementia, Underlying: Dysphagia, Other Contributing Conditions: History of recurrent aspiration and aspiration Pneumonia...his comment: "It is really too bad that the medical preofession does not do correct reporting in this so that the true prevalence of Alzheimer's would show up in the statistics."
It is obvious that our front line medical personnel are ignorant of the importance of proper completion of death certificates and or lack even the most basic understanding of Alzheimer’s and dementia as terminal diseases. Most medical personnel do not even know the distinction between the terms "Dementia" and "Alzheimer’s". Medical ignorance is preventing proper funding for a cure...
I recall the day (2006) that the director of nursing at my mother’s nursing home sought to correct me when I mentioned my mother’s Alzheimer’s. She advised me that my mother did not have Alzheimer’s but instead, she had dementia. This DON did not even understand that dementia was not a disease but rather it was a group of symptoms. With this high degree of ignorance by the medical profession, it is little wonder that death certificates are not properly completed.
The net result of a combination of ignorance and carelessness would suggest that current data for Alzheimer’s mortality is grossly understated and that heart mortality data is inflated and distorted.
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Note: While there is no single test that can definitively diagnosis Alzheimer's disease. It is said that, a qualified physician that completes several diagnostic steps can diagnose Alzheimer's with over 90% accuracy. The most common mental status exam used in the diagnosis of Alzheimer's disease is the Mini-Mental State Exam (MMSE), a research-based set of questions that provides a score about a person's general level of impairment. The Diagnostic and Statistical Manual of Mental Disorders outlines a detailed set of criteria that must be met in order to assign a diagnosis of Alzheimer's.
“With a thorough screening including blood tests (to rule out other causes of dementia such as vitamin deficiency), a mental status evaluation, neuro-psychological testing, and sometimes a brain scan, doctors can accurately diagnose the cause of the dementia symptoms in 90 percent of the cases.” (Mayo Clinic – September 2007)
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My wife, June K. Berg (See the Photo below on right) was first diagnosed with early stage Alzheimer's on 26 January 1998 by the Neuro-psychology Laboratory at the University of Minnesota following a series of tests.
This diagnosis was later verified by the Mayo clinic's Alzheimer's Center in a series of examinations in early March 2001. At the same time she was also enrolled in the Mayo Clinic's Alzheimer's Disease Research Center for periodic follow up. We were told during these conferences and meetings that with all of the research in progress, that they expected a cure would be found in the next 5-10 years.
After June passed away from the complications of Alzheimer's (23 October 2008) following a journey of almost 11 years, medical science was no closer to finding a cure then they were at the time of her diagnosis!
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My Mother Ellen F. Silbaugh (Photo below on right) was a resident of the Barron Nursing Home, Barron, WI, at the time she was examined by Dr. J. Scott Persing of the OMNE Clinic in Barron. Dr. Persing was a doctor of Psychiatry and qualified to diagnose Alzheimer's. The examination and the diagnosis of "Alzheimer's dementia" was made on 22 January 2004. My mother died on 21 October 2007.
I was concerned about the drugs being administered to my mother by the Nursing home and had made an inquiry about the drugs a month before mother died.
I was concerned about the list of drugs that I had been provided with. Having received no adequate explanation, I renewed my request the week before she died. I had visited my mother the day before her death and had not yet received the requested information and was told that the doctor had not returned a call made by the nursing home. (This was not Dr. Persing's Office.) When I visited my Mother on the day before her death she appeared to me to be heavily sedated. Mother had been transformed from an alert, "wisecracking" social personality into a drugged stupor. Mother slept the entire day. Even when the staff tried to feed her she would not open her eyes. I spent the day of my visit simply sitting with her and holding her hand. I returned to Minneapolis late that afternoon. Mother died 7:30 AM the next morning.
On October 29th, 2007 I sent the below written inquiry to the Nursing Home again requesting information on the drugs being given to my mother in the days and weeks before her death.
"I am still interested in the drug matters that I addressed over a month ago. As far as I can determine, I never received any explanation for the areas of my concern. My main concern was with the use of three drugs labeled in the drug list as either dementia or anxiety drugs. As far as I can determine none were ever approved as a dementia drug and two that were listed as dementia drugs were clearly not dementia drugs but behavioral type drugs. To my mind the use of three drugs for behavior in a 98 year old lady was excessive. My mother was full of life and could be a bit much at times as you well know. Then subsequent to June of this year things started going down hill rapidly. I also note that one drug in particular - SEROQUEL was started in June with doses 4 times a day. I used to kid my mother that she would outlive me. I really believed it as she had none of the life threatening problems that I have and apparently inherited from my biological father. I was sure that she would break the 100 year barrier. Then less then 5 months later she is dead….I am convinced in my mind that the drug program started in June cut not only months but perhaps years off of my mother’s life.
SEROQUEL incidentally has an FDA black box warning as of April 11, 2005 that this drug could result in serious injury or even death if used to treat Alzheimer’s or dementia. It was not FDA approved for treatment of dementia. The Seroquel web site specifically advises that it is NOT approved for treating elderly patients with dementia who are at an increased risk of death. So my added question now is: Why when the drug company itself warns against such use and when it was not FDA approved for such use, was it being used on my mother. I also pointed out an interaction between Depakote and Lorazepam that shows up on EVERY drug interaction checker including a medical professional program So far I have received zero explanations for the areas of my concern”.
After receiving no response from the nursing home, I finally made a complaint to the Governors Office (March 2008) in the state of Wisconsin. They made and investigation and citations were issued against the nursing home but of course this did not bring my mother back.
This to my mind, is another glaring case of medical ignorance and aggravated by the fact that it was done in a nursing home that should be more knowledgeable. The doctor associated with this nursing home is also the one that did not properly complete the death certificate.
Mother's Drug Listing: Because I had become concerned about the change in my mother’s energy and personality I requested a listing of her current drugs and medications. This was done on Saturday September 22nd, 2007 during an all day visit with my mother at the Barron Nursing Home. I was given the following listing. I raised several questions and concerns about the drugs but was unable to get an answer neither from the Nursing home staff nor from the prescribing doctor or doctors prior to her death a month later on the morning of 21 October 2007.
Sennokot tab 2 x daily constipation.
Tylenol#3 (30mg) 1 tab PO 4xd prn pain
Synthroid .05mg tab PO daily (hypothyroid)
Seroquel 100 mg four times daily (dementia)
Lorazepam .5 mg tab PO on bath day (Tuesday) (Anxiety) x as needed.
Depakote Sprinkles 250 mg every am and 500 mg at 2000 daily (Dementia)
Aspirin 325 mg PO Daily.
Miralax 1 pack (17 grams) daily (constipation) as needed.
Lorazepam .5mg tab PO up to 2xd for agitation, could be used as an alternative.
Note: The MD Signature and date on bottom of listing was blank. The starting date for the Seroquel was shown as 6/4/2007. It was following this date that I started noting my mother was becoming more lethargic. The first Lorazepam listing has a start date of 2/23/2006. The second listing of Lorazepam shows a start date of 10/3/2005. The Depakote which is normally prescribed for seizure control has a start date of 5/1/2006. My mother never had seizures. The purpose of this item is a puzzle. It was certainly a contributor to her overall energy and personality change. Contrary to the indication of dementia it is not FDA approved for this purpose. None of the drugs listed are so approved. Seroquel has an FDA black box warning against such use. Lorazepam is an anxiety drug not approved for Alzheimer’s. None of the drugs were discussed with me prior to usage.
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New Studies verify Death certificates as “Notoriously Inaccurate”
A new study published in “Neurology” journal for 5 March 2014…the medical journal of the American Academy of Neurology, verifies every thing I have stated in this essay as regards the under reporting and under estimating of the number of deaths due to Alzheimer’s
The study was conducted by RushUniversityMedicalCenter at Chicago. …they found that the present mortality figures published by the CDC is based on “notoriously inaccurate death certificate reports”…According to Bryan D. James, an assistant professor with the Rush Alzheimer’s Disease Center who led the study…
”Alzheimer’s disease and other dementias are routinely under reported on U.S. death certificates”…”People filling out the certificates typically focus on the immediate cause of death – say, pneumonia, when the patient wouldn’t have developed pneumonia without first having Alzheimer’s disease….’Determining the true effects of dementia diseases in this country is important for raising public awareness and identifying research priorities”
The study was based on 2,566 people aged 65 and older and with an average age of 78…over an average time of 8 years, 1,090 patients died. Some 559 people who didn’t have Alzheimer’s dementia at the start of the study developed the disease, with a median time from diagnosis to death of nearly 4 years…When the researchers calculated the risk of excess deaths in people who developed dementia diseases ..versus those who didn’t they found it was more than four times higher in people aged 75-84 with Alzheimer’s disease, and nearly three times higher in people aged 85 and older…
This was then translated into about 503,400 deaths from Alzheimer’s disease in the U.S. population older than 75 in 2010…this would make Alzheimer’s the 3rd leading cause of death in the US behind Heart Disease and Cancer…This averages as 1414 daily deaths due to Alzheimer's.
This was found to be 5-6 times greater than the 83,494 number reported by CDC based on death certificates…”which experts have long believed undercounted Alzheimer’s deaths”, said Keith Fargo, director of scientific programs and outreach for the Alzheimer’s Association…”We actually think this is a good number. We think it’s an eye-opener.” He said. “We hope it reinforces the image of Alzheimer’s as a fatal brain disease instead of a memory problem.”
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Reader's Comments
Gill Denman - Essex, Unired Kingdom - (6 March 2014): "This is the same situation that we had over here (and may still have) with hospital aquired infections such as MRSA & CDiff, other things were put on death certs to, sometimes, make the figures look better. In London there was a march to Downing Street & Parliament by those whose lives had been touched by Cdiff. That campaign & march may have been one of the turning points in questioning hospital standards. Why are people not protesting in the same way about lack of help/research/reporting of dementia? It is a scandal, we all know that. A thought went through my mind relating to it being 3rd in causes of death - is it? How many of those who died from heart disease or cancer also had dementia?"
Jon Nichols - Springfield, Virginia - (6 March 2014): "Stan - I have to say...even though it's been almost a year since I lost my Dad...your dedication and information are an inspiration to all. There is a special place in heaven (although I hope not too soon) for you. Thank you for all you do. Your guidance and information has enabled us to help others we know help deal with this terrible affliction. Knowledge is power; it's just a shame more people haven't got it yet. Thank you again...!!"
Amy Stiel Almas - Waterford, Michigan - (6 March 2014): "Last night on our local news there was a big story on Alzheimer's stating pretty much what you say and what we know is true. There is supposed to be a major increase infunding. I was half asleep but I'm going to try and find it. We can only hope."
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Ellen's Passing
Ellen F. Silbaugh's funeral notice as printed in the Barron News Shield can be seen by clicking the below link:
(Ellen F. Silbaugh in Memoriam)
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June's Passing
June K. (Rolstad) Berg’s funeral notice as printed in the Minneapolis Star-Tribune can be seen by clicking on the below link:
(June K. (Rolstad) Berg in Memoriam)