This is an important article for all to read, but especially to those of you who have been distressed by "Alzheimer's Disease" NOT being listed as cause of death on your spouses' death certificates. Maybe, just maybe, after the publication of this article, the powers that be will wake up to the fact that Alzheimer's Disease is an incurable, terminal disease. The direct link to the article is on the home page - www. thealzheimerspouse.com - under Breaking News, or you may copy and paste - http://www.nbcnews.com/health/health-news/alzheimers-deaths-may-rival-cancer-heart-disease-study-finds-n44521
Please read the article and then post comments here. Thank you.
Because AD is often called a 'disease of forgetting,' people don't believe you can die just because you forget who your g'children are--and, actually, you don't die because of things like that. The average person fears it, but thinks they can read books to avoid it, they do crossword puzzles and learn new dances and believe they are safe. Can't you just remind someone of something they forgot, what's the problem? And, everyday forgetting is not always the first sign of AD.
Years ago I knew a woman whose FIL had AD and when she told me he forgot his children, I really did not understand--why didn't they just remind him. Because of my own ignorance, I am usually not too hard on those who don't understand, who don't believe what they are told.
Rather than a disease of forgetting, it should be called what it is: a BRAIN disease. The true AD deaths are vastly under reported--I believe so is the disease itself. I personally knew of two families who would never see a doctor--sometimes it's fear, sometimes's is shame--altho there is nothing to be ashamed of. But there it is. I have been writing about it for almost a decade, trying in one small way to educate--progress is scant. Still, for everyone who writes a letter, attends one meeting, speaks at one forum--it all helps. Sadly, as we are aging and more and more people get it, it will be hard to avoid, more attention and money will eventually come.
Again, for some there is shame even on the Death Certificate. "Pneumonia after a long illness in a care facility" sounds benign, but when I read that about a celebrity, I automatically think it was AD. Change will come as it did with cancer--I remember from my childhood that no one would even say the word. Yes, it is an important issue.
I always told my husband that he had a Brain Disease,just as others had heart disease or kidney disease,he had a brain disease. I wish more people would look at AZ as a disease.I did notice two obits in the past month listing death from a long illness of Alzheimer Dementia.Why does everyone think of AZ as only memory loss?that is the least of the problems.
My DH death cert, lists Alzheimer/dementia first, AODM-adult-onset diabetes mellitus second, elevated cholesterol/PSA third and forth. For some reason it made me happy when I saw the death cert listing AD first. Maybe we are starting to make some headway.
As I was writing the last comment the article came on the news and the newscaster said that the "powers to be" will admit that quite a few death certificates are being wrongly recorded...but not as big a percentage as the report is saying! Go figure!!
I moved these comments from a duplicate discussion. joang
Mim 6 hours ago edited edit delete Kind of an unpleasant title, but that's what it was called on the news report I watched this evening. They feel that many, many more deaths are Alz. related that death certificates show. Like over a half a million, as opposed to 50-60 thousand a year. The doctor fills out the death certificate with the immediate cause of death (heart attack, stroke, kidneys, etc.), but usually fail to mention the years of Alzheimer's that may have contributed to the cause of death. I hope I'm stating it correctly! I wonder if one can request that the attending physician put that on the certificate? It might be helpful to future generations.
SO SORRY - I just read that there is another post about this very thing. I really need to catch up before posting a new discussion!!! :(
deb42657 5 hours ago edit delete The same thing happened with my FIL. He died over 20 years ago at the age of 80 and he had Alzheimer's but the death certificate said heart attack. With all the people that are getting this disease they still have trouble diagnosing it! What a shame!!
I have a question - when was it defined as Alzheimer's? I know it was a doctor (way back) who named it, but when did it start to become more widely used? Just wondering,because my grandfather died in 1967 & looking back, we now know he had AD. At the time, he was just called senile. I haven't seen his death certificate, though, so I don't know what the doctor recorded.
Interesting question. Claude was diagnosed in 2002 with "Alzheimers" and his death certificate in 2009 said "Alzheimers type dementia" even tho he probably passed from severe coronary artery disease.
My brother-in-law was diagnosed with "senile dementia" in the mid 80s. He passed away from colorectal cancer in 1999. His death certificate said cancer first and senile dementia secondary. There was never any mention of AD in his records ( I had medical power of attorney for him), but after caring for Claude for nearly 10 years, I would definitely say he had AD.
Since there is still a "stigma" against the word Alzheimers, I wonder if that's the reason it isn't listed.
On November 26, 1901, Dr. Alois Alzheimer described the symptoms he observed during an interview with his first patient, 51 year-old Frau Auguste Deter. Five years later he biopsied her brain, presented a report on his findings to a conference of German psychiatrists and eventually the disease came to bear his name. The disease has been around for generations but was called by a variety of names. He describes the plaques and tangles we still talk of today. It is interesting that Frau Deter was only 51, today we would say it was early onset, but she had to have had it for some years before.
I think they all mostly went under the umbrella of senile dementia. My grandmother had CHD and atherosclerosis as her cause of death. She was senile, knew none of us, lived in her childhood but she was 94 when she died. Now I think they call it VaD. My mother had the same thing but CHD was listed as cause of death.
I remember being so concerned when I called the doctor's office to determine what the doctor had written for cause of death. I really wanted Alzheimer's because I knew it was underreported. I was so relieved to find out that my DH's Certificate states: Cause of Death: a. Alzheimer's Disease, interval: 7 years
no other causes but at the bottom under "Other conditions contibuting to death: Psychosis and Failure to thrive - adult"
The doctor couldn't have been more exact than that.
ahh yes when I have told people my DH died of Alzheimer's I have so often been asked the question: "but what did he really die of?" (they want me to say pnomonia) but I always say Alzheimers, he forgot how to swallow, and then finally forgot how to breathe. It certainly provides me with an educational opportunity. It is surprising that friends who know about my Alzheimers journey still dont know that Alzheimers can kill directly without any other contributing factor.
My experience kind of goes along with what hikergirl* posted.
The circumstances and timing of my husband's death were unexpected, and since he was not going to be cremated or buried, the transport of his body had to be immediate. I was in shock so I don't know if my memory is totally correct but the way I understood it was this:
Because he was a hospice patient, it was the hospice doctor who signed the certificate. I don't know if it is custom or requirement, or both, but a cause of death had to be the reason for his admittance to hospice, which was adult failure to thrive. There was another acute cause listed as contributory.
In any case, Alzheimer's could not have been legitimately listed because he had FTD. I looked at the above posts which cited dementia. Regarding reports such as the one Joan cited I wonder how extensive the general understanding of AD is- does it extend to FTD and other types of dementia?
How big is the umbrella? I'm thinking of LFL, Coco, pamsc and others. Is the cause better served by specifying AD? The report said it is a "wasting of the mind" and I think we all know it is more than that.
Abby, I've been wondering the same thing. Steve's primary cause of death was shown as advanced dementia. Secondary were seizures and high bp. It was also the hospice doctor who signed the death cert. So does he get counted as someone who died from Alzheimers? That was certainly what he had--I was told he was a textbook case.
Abby*, when I tell people that Rich has a form of dementia (FTD), I either get a blank stare (doesn't register) or they say, "oh you mean he has Alzheimer's?". I think the general public thinks of Alzheimer's disease when they hear the word "dementia"....most people, incl physicians are not educated that there are several forms of dementia, not just AD.