In the three weeks since Don died three different people who asked me what he died from have "informed" me that...You don't die from Alzheimers. And one was an MD, an opthomologist, but, good grief, he did go to med school! I try to politely tell them that AD is not just a memory problem, that there are serious behavior and physical problems and that, as different parts of the brain die the person is finally unable to swallow, speak, or finally, to breathe and that yes, AZ is a fatal disease and will kill you. I just feel so crappy about the lack of knowledge on the part of the general public about this horrible disease that stole my husband. Does anyone else have to make a huge effort not to scream at people?
I was just sitting down to write my "September is Alzheimer's Awareness Month" blog, thinking that so much has been said, written, and videoed, that how could the general public not know about it? The fact that an MD is so ignorant of the disease is disheartening. I am going to use your example of the health professionals' gaffes at part of the blog ( if it's okay with you).
Joan, it sure is. The one today who said it was the bank manager who I saw when I was removing Don's name from my checking account. I just wanted to hit someone!
This has been the biggest thing I have encountered. That you do not die from AD. I have even had problems with family not understanding and thinking I am over reacting to all that is going on. Several times when I have talked about what DH was doing or not doing my sister even said, her husband does the same thing. Her husband is fine. That does not help.
I did not even know at the beginning that this was the 6 leading cause of death.
The MD not knowing............Heaven help us.........
Include the Hospice personnel in not understanding AD into the mix. First, hospice is wonderful and I don't know what I would have done without them during my dh's last couple of weeks. However, and I did tell the hospice this, I was really taken back by how little the nurses, caregivers from hospice understood AD. They so misjudged my dh's condition and thought I was a woman with a big imagination and my dh was not nearly as bad as I kept telling them he was.
Of course, EOAD often moves much faster in the final stages then regular AD...and they didn't have a clue about that either. Hospice is so use to dealing with cancer patients and the AD patients they have are most in their late 70s and 80s. In fact, the group of hospice I had told me this was the first time they had had a person 65 years old with AD. My dh also had a severe heart condition. At least when the hospice doctor came and told me I would now be facing the "end of the end" and took my dh off all medications and I had a nice little talk with him about their lack of understanding EOAD he agreed with me and he thought they needed to have some training programs on this condition and he felt within 10 years they would be seeing more AD people then people with cancer.
A large reason for the slow acceptance that AD kills one is doctors for so long have put down cause of death as pneumonia, organ failure, etc - things we all know result as the brain dies. What kills the brain - Alzheimer's. My grandmother had 'atherosclerosis of the brain' as cause of death. She had dementia - senile dementia is what I call it cause she did not have all the AD symptoms. Maybe now they would call it VaD but to the best of our knowledge she never had a stroke. She was 94 when she died. Even though my FIL died from AD the death certificate read 'organ failure'.
These failures are caused by the disease. Pneumonia is often the result of aspiration due to AD destroying their ability to swallow.
The Hospice facility we were in.....cause of death: Alzheimers. My beloved was 62 with a healthy heart. They too were in shock by his age and the health of his body. I have had people comment "they are scared of the disease" I tell them they should be.......why........no cure, no medications, no help !!!
Don's death certificate listed two: 1.Failure to thrive 2.End Stage Alzheimers Disease. Of course, he was in an Alzheimers ALF, so their dr. was the one who listed the causes. Hospice also understood the end was near when they were called in and provided wonderful help. When the hospice social worker told me the end was near I asked, "Two weeks?" and she said, "Not that long" I then askedk, "One week probably?" and she said, "At the most" Actually it was exactly one week. Aside from AD he was a very healthy person, never got sick, didn't even get plaque on his teeth! Once you get AD maybe it's better not to be so healthy that you don't die of something else before the AD gets so very awful.
Claude's death certificate listed "alzheimer's type dementia". We never did get a definitive diagnosis - two different neuros and two different diagnoses.
I graduated from nursing school in 1986. Very little information about AD or any dementia was covered in our education. BUT it was very explicitly told to us that "People DO NOT die from AD, dementia is not a killer disease!" We were aslo told that dementia people MUST be oriented and they should NOT be 'allowed' to live in their fantasy worlds.
This all reflects on how little was known about dementia even a few years ago. And how little interest there was in truly understanding this condition. But my gosh how much heart disease and heart attacks were drilled into us!!
What this means is that the established medical community (people practicing for the last 10-30 years) were all raised with inaccurate information and their continuing education and training have NOT corrected these misconceptions.
Hey are you listening ALZ organizations??? How come you dont have goals and formal programs that would work to correct all this mis-information among the medical community??
Too many MDs do not know how to properly fill out a death certificate. In CA the funeral directors association developed a training class for MDs on how to do so because incomplete and inaccurate certificates were delaying funerals. Doctors get NO TRAINING in medical school in how to do this important task.
As an FYI 100% of all deaths in the entire world is technicaly casued by 'cardiac arrest' because that is how an MD diagnoses death. (the heart stopped) Until the heart stops they are still 'alive'. This is how MDs are trained to diagnosis or dertermine death. Because of this, too many MDs then list 'heart failure' on the certificate. Which of course is wrong.
What does it all mater? death certificates are aggragated and the data is used to discover the most common causes of death in a country and by age groups. The Heart Associations and researchers all get a lot of attention (and money) because 'heart failure' is always the #1 cause of death STATISTICALLY.
ALZ/demntia has been promoted/listed as a recognized cause of death in only the last few years. As soon as doctors and others began listing AD as a cause, it shot up to the #5 leading cause. As more docs correctly list it (and more baby boomers get it) I expect it to go even higher.
And yes my own dementia Great-grandmother who died in a NH in 1962 had Arterioschlerous and heart failure as her cause of death. Not suprisingly my genealogical research also showed that her home had been signed over to the nursing home. A familiar story today but not talked about back then. Jim
Six yrs ago I was asked to write an AD column for Todays Senior Magazine (todayssr.com). It has a limited circulation, but is read by thousands each month. The editor says it is the premier column most people ask about--I don't think it's my writing, I know it's the topic, that so many people are afraid, so many shamed, so many ignorant of what we know here because of our personal experience. I do it to try to educate, and many do learn, BUT there are all kinds of popular books about how to avoid AD, dementia, etc. There are computer ads that come on, telling about AD, etc, (and they are not accurate), but people buy anyway. They usually tell people about eating well, certain vitamins, supplements, exercise, brain games, etc. that they just happen to have available for sale or a monthly newsletter for only pennies a day. I have written about docs who know nothing about it, and that I think everyone in the medical field should have classes in dementia. If you're a dentist, eye doctor, whatever, you'll have patients w/dementia, and you won't understand their behavior. I've written how someone dies from AD because the brain 'forgets' how to tell the body to breathe, etc. I have self-published 3 AD books for the layman that just languish while others that tell you how to avoid AD make a fortune. I'm not complaining, mind you, I'm doing what I do because I want to and I can, just telling why I think so many still don't know the facts. So they gobble pills from the health food store, learn tricky dance steps and think, with great confidence, "I won't get AD" and in most cases they won't, but it's not because of what they're doing, most won't get it anyway. And death certificates or news reports: When you read that some celebrity died 'after a long illness' or in a 'care facility' or from 'pneumonia' you can be quite certain it was AD or some dementia. Few people die of common pneumonia any more and any long illness usually has a name. So I think that's why so many are still unaware of AD facts, and it will be that way for some time. And I'll just keep on writing. This month is about the NFL & next month will be brain donations--that was not easy for me to write. Ewwww. But that's what I did for my beloved husband, and I know he would have agreed.
Yes, when my mom died of it in 1994 and I called her doctors to relay the news, I was asked what was the cause of death and I said ALZ...and she said " no no honey, what did she die of you know stroke, cancer etc,,," and I just repeated she died of Alz and that is what is on her death cert.
This thread started to veer off in a completely different direction than its original title - this discussion is about the ignorance of health professionals and the general public about Alzheimer's being a cause of death. I moved the Agent Orange comments to a new thread titled Agent Orange. Please, post comments about Agent Orange under that new thread.