Editorial
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
ACKNOWLEDGMENTS
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.
REFERENCES
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.
JAGS 2016
© 2016, Copyright the Authors
Journal compilation © 2016, The American Geriatrics Society
Journal of the American Geriatrics Society. December, 2016, Vol. 64, No. 12, pp. 2419-2420. Access at: http://onlinelibrary.wiley.com/doi/10.1111/jgs.14555/full.
(Published online on 11/8/16 in advance of print publication. Access at: http://onlinelibrary.wiley.com/journal/10.1111/(ISSN)1532-5415/earlyview.)
