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A Public Death: Alzheimer’s more common than death records show

A Public Death: Alzheimer’s more common than death records show

There’s a growing body of evidence that Alzheimer’s disease is more common – and more commonly fatal – than people think.

That evidence is rooted in death certificates and medical records, and the research projects revealing these findings underscore the need to recognize how restrictions placed on access to death records has a real societal cost.

The most recent study was published in Neurology.

Researchers followed 2,566 people aged 65 years and older, tracking them through identical annual diagnostic assessments for dementia and medical records. All of them had agreed to donate their brains after they died, and, so when they died, their brains were examined for signs of Alzheimer’s disease.

They found that about 22% of the people in the study (559 people) started the study without dementia but developed Alzheimer’s disease over an average of eight years. The onset of Alzheimer’s tended to be a harbinger of death. The researchers wrote, “Median time from [Alzheimer’s disease] dementia diagnosis to death was 3.8 years.” In all, 1,090 people (about 42% of everyone being studied) died during the study.

As a result, the researchers estimated that about 503,400 deaths in Americans aged 75 and older could be attributed to Alzheimer’s dementia in 2010. For people who pay attention to death statistics, that’s a stunning number. The CDC captured just 83,494 deaths from death certificates in 2011.

The research team came from Chicago’s Rush Alzheimer's Disease Center, the Rush Institute on Healthy Aging, and Rush University Medical Center, as well as the Departments of Psychiatry, Neurology, and Epidemiology at the University of California, San Francisco, and the San Francisco Veterans Affairs Medical Center. The researchers talked up the death certificate angle to journalists around the world.

Sarah Knapton at The Telegraph in London wrote:

The number of people dying from dementia has been vastly underestimated with the disease potentially responsible for more deaths than cancer and heart disease combined, new research suggests. A study from the US has found that Alzheimer’s and dementia is widely under-reported on death certificates and medical records.

The researchers estimate that figure could be six times higher than reported because doctors usually pick a disease that the person was suffering as the cause of death.

"Alzheimer's disease and other dementias are under-reported on death certificates and medical records," said study author Bryan D. James, PhD, of Rush University Medical Centre in Chicago.

The finding has huge implications for health policy planning and for disease research. As JoNel Aleccia at NBC News wrote:

If that’s true, it means that the disease deserves research funding for prevention and treatment on par with such massive scope, perhaps $2 billion a year, four times what’s now being spent, experts said.

“Determining the true effects of dementia in this country is important for raising public awareness and identifying research priorities,” said Bryan D. James, an assistant professor with the Rush Alzheimer’s Disease Center, who led the study published Wednesday in the journal Neurology.

This isn’t the first study to show that deaths from Alzheimer’s are underreported.

In 2009, the Journal of the American Medical Association (JAMA) published a study that showed that even in cases where dementia was diagnosed before death, it did not show up on one-third of death certificates for those patients.

“The bottom line is that national health statistics are based on a gross under-representation of the burden of dementia as a terminal illness in our society,” Dr. Susan Mitchell, a senior scientist at the Hebrew SeniorLife Institute for Aging Research in Boston, told Susan FitzGerald at Neurology Today.

In 2012, the Global Burden of Disease study attributed about 160,000 deaths in the United States to Alzheimer’s, twice the number captured on death certificates. The study also found that the number of Alzheimer’s deaths climbed by more than 500% between 1990 and 2010, mostly as a result of the population getting older. (Full disclosure: I work at the Institute for Health Metrics and Evaluation (IHME) at the University of Washington, which led the study.)

But, if the Rush researchers are right, that number may be much higher. In addition to the research funding inequities identified in some of the news coverage, there’s also the need to appropriately prepare for handling the wave of Alzheimer’s patients that will be entering hospitals, long-term care facilities, hospice care, or accessing in-home health services.

This time last year, in March 2013, the AP’s Lauran Neergaard reported on another Alzheimer’s study that involved Rush researchers. She wrote:

But Tuesday's report calculated that health and long-term care services will total $203 billion this year, much of that paid by Medicare and Medicaid and not counting unpaid care from family and friends. That tab is expected to reach $1.2 trillion by 2050, barring a research breakthrough, the report concluded.

Photo by David, Bergin, Emmett and Elliott via Flickr.

Comments

Really an interesting/troubling story. In my little town in Southern California, Ojai, I recently reported on a nursing home that changed to become a place for Alzheimer's Disease patients only -- apparently because it's much more lucrative, according to the Medicare billing system. This meant exiting its patients and firing the entire staff. Presumably this will mean hiring more highly paid staff, and providing a higher standard of care for the demented.

If far more people are dying of Alzheimer's than is generally realized, does that mean that the healthcare system is in a sense underpaying for the care of the elderly? What are the implications? 

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