Reporting Deaths of Individuals with Alzheimer’s Disease
After a 10-year struggle with early-onset Alzheimer’s disease (AD), my wife recently passed away in a nursing home, 1 month before her 70th birthday. Shortly afterwards, I received a copy of her death certificate, and I was stunned.
When I read Section 30, part IA of Clare’s death certificate, where a doctor is supposed to note the immediate cause of death, the doctor wrote “cardiac arrest.” That came as no surprise because Clare had had heart problems for more than 20 years.
It was when I read Section 30, part II of Clare’s death certificate that I was absolutely shocked. That section is where a doctor is to note “Other significant conditions leading to death but not related to cause listed in part IA.” The doctor left that space blank. That is what stunned me ... and angered me. The doctor made absolutely no mention of Clare’s AD.
The word, “Alzheimer’s” appears nowhere on Clare’s death certificate. Several months after my beloved wife’s death, I am still having trouble wrapping my mind around that.
In 2014, relying upon two studies conducted with partial funding from the National Institute on Aging (NIA), National Institutes of Health (NIH), the NIA concluded that, “Underreporting of Alzheimer’s as a cause of death on death certificates is a well-known phenomenon. Some people with the disease never receive a diagnosis. Many others have dementia-related conditions, such as aspiration pneumonia, listed as the primary cause of death while the underlying cause, Alzheimer’s, is never reported.” 1
According to Bryan James, the lead researcher on one of the studies, “Alzheimer’s causes the brain to decline over time. At first, it affects those parts of the brain responsible for thinking and memory. Eventually, it can lead to problems with feeding and swallowing. This puts people at risk for poor nutrition, dehydration, and infection. At that stage, it can lead to fatal conditions such as pneumonia and heart failure.” 2
When I asked Clare’s nursing home doctor why he did not list AD as a “significant condition” leading to her death but not related to the immediate cause of death, cardiac arrest, he said that he could not be sure that AD played any role because of Clare’s previous heart history.
Hello? If Clare never had AD, she would have lived a much healthier life style, especially in these last few years. All else being equal, Clare would have been exercising daily, as she had been doing up until her last few years, and she would have been eating more nutritiously and sleeping better. Her heart problems had been under control for years with medication.
If Clare never had AD, she may never have needed powerful medication to help control the anxiety she developed as a consequence of her AD in her last 2 years ... medication that came with specific warnings of higher incidence of death when taken by people with dementia but medication she was given anyway because nothing else would calm her down. According to the Centers for Disease Control and Prevention (CDC), in 2013, the latest year for which they have complete data, 93,541 Americans died of AD, making it the sixth leading cause of death in this country. 3 The CDC bases annual death statistics solely upon causes of death listed on death certificates, so when they collect 2016 data, Clare’s death will be counted solely as a death due to heart disease, not a death due, at least in part, to AD.
It is as if, medically, Clare’s last 10 years never existed. Clare spent 10 years battling AD, but there will never be any official documentation that she ever had this horrible disease. That just does not sit right with me.
I accept that, even if Clare never had AD, she might still have died of cardiac arrest that same April morning, but I also know that, if Clare had not AD these past 10 years, she would have had significantly better health, would have had significantly better quality of life, and might have lived significantly longer.
NIH funding to help find effective treatment for people with AD, let alone ways to prevent or cure it, might be significantly higher were the numbers of deaths due to AD reported more accurately. One of those two 2014 NIA studies suggested that deaths due to AD are so underreported that AD may really be the third leading cause of death in this country, behind heart disease and cancer. 1 Perhaps NIH would fund AD research at the same high levels as heart disease and cancer research if all those underreported deaths were properly recorded as deaths due, at least in part, to AD.
Doctors should write “Alzheimer’s” on death certificates for all who die while in the end stages of AD. Even if not listed as the immediate cause, AD should certainly be listed as one of those “other significant conditions leading to death.” Researcher James noted, “Trying to identify a single cause of death may not reflect the reality of dying for many older people, where multiple health issues contribute and lead to a cascade of deterioration of health and function that leads to death.” 2
It is difficult enough for caregivers to watch their loved ones suffer a slow and inevitable death from AD, but then to discover that their loved ones will not even be counted among those who died at least in part from AD simply because a doctor did not feel it was important to note this “other significant condition” on a death certificate ... well, that is just not right.
Allan S. Vann, EdD
Allan S. Vann writes frequently about Alzheimer’s disease. His articles published in caregiver magazines, medical journals, and in major newspapers may be read at http:// www.allansvann.blogspot.com. His columns for The Huffington Post may be accessed at http://www. huffingtonpost.com/allan-s-vann.
Conflict of Interest: None.
Author Contributions: Allan S. Vann is sole author.
Sponsor’s Role: None.
1. National Institute on Aging, National Institutes of Health, U.S. Department of Health and Human Services. Number of Alzheimer’s Deaths Found to Be Underreported. 2014 [on-line]. Available at https://www.nia.nih.gov/ research/announcements/2014/05/number-alzheimers-deaths-found-be-underreported. Accessed July 21, 2016.
2. McMillen M. Alzheimer’s Kills More Than Expected. WebMD Health News, 2014 [on-line]. Available at http://www.webmd.com/alzheimers/news/ 20140305/study-alzheimers-more-deaths. Accessed July 21, 2016.
3. Centers for Disease Control and Health Prevention, National Center for Health Statistics. Number of Deaths for Leading Causes of Death. 2016 [online]. Available at http://www.cdc.gov.nchs/fastats/deaths.htm. Accessed July 21, 2016.
© 2016, Copyright the Authors
Journal compilation © 2016, The American Geriatrics Society
Published online on 11/8/16 in advance of print publication in the Journal of the American Geriatrics Society. Accessed at: http://onlinelibrary.wiley.com/journal/10.1111/(ISSN)1532-5415/earlyview