The number of Americans dying from Alzheimer’s disease may be hundreds of thousands more than current statistics indicate, according to a new study published in the journal Neurology.
In 2010, experts estimated that 84,000 older Americans passed away as a result of the neurodegenerative disorder. Now, an investigation conducted by researchers from the Rush Alzheimer’s Disease Center posits that the actual number of Alzheimer’s-linked fatalities could be as large as six times that amount.
“The estimates generated by our analysis suggest that deaths from Alzheimer’s disease far exceed the numbers reported by the CDC (Centers for Disease control and Prevention) and those listed on death certificates,” study author Bryan James, Ph.D., assistant professor in the Department of Internal Medicine at the Rush University Medical Center, says in a statement.
The drastic disparity between the official statistic of Alzheimer’s deaths and the claims made by James’ team makes for an attention-grabbing headline, but understanding the true impact of the study requires closer scrutiny.
Researchers came to their eye-catching conclusion after following 2,566 older individuals (with an average age of 78) over the course of eight years. Participants were regularly screened for dementia symptoms, and about 22 percent developed Alzheimer’s disease during the study.
Once diagnosed with Alzheimer’s, an individual’s death risk jumped. Overall, one third of the total deaths that occurred during the study were connected to Alzheimer’s disease.
Applying these results to the CDC’s figures, James calculated that, in 2010, 503,400 deaths among Americans over 75 could be traced back to Alzheimer’s disease.
“We know that five million people are living with Alzheimer’s disease,” says James, “Based on death certificate records, only 84,000 deaths are said to be from Alzheimer’s disease. While this makes Alzheimer’s disease the sixth leading killer in the United States, it probably doesn’t paint a valid picture of the true number of deaths from this disease.”
How Alzheimer’s kills
Alzheimer’s disease is a neurodegenerative condition that gradually kills off cells in certain areas of the brain. The progression of this most common form of dementia varies from person to person, and it can take anywhere from a few years to a few decades to run its course.
But what do people with Alzheimer’s actually die from?
The actual symptoms of the disease—memory loss, mobility issues, problems performing daily activities, aren’t necessarily lethal in and of themselves, but they can have deadly consequences.
A person with Alzheimer’s who accidentally aspirates—when food enters the windpipe and lungs, as opposed to the esophagus and stomach—because they’ve forgotten how to eat properly has a high risk for developing pneumonia, a top cause of death among aging adults.
Decreased depth perception caused by cognitive impairment can result in an injurious fall, leading to a potentially deadly hospital stay.
A senior who is bedridden because they can no longer remember how to move on their own may develop bedsores or a urinary tract infection, which can progress to the point of death.
In each of these instances, the official cause of an individual’s demise is likely to be cited as pneumonia, traumatic injury or infection—not Alzheimer’s. “Death certificates often list the immediate cause of death, such as pneumonia, rather than the underlying cause of death, like Alzheimer’s disease” says James, “This is a problem when you’re trying to estimate how many deaths are caused by Alzheimer’s disease.”
A stronger argument for funding
Such a distinction may not matter much to the deceased individual and their family, but it can have a big impact on funding for Alzheimer’s research and public policy regarding the disease, which currently has no sure or effective treatment.
Alzheimer’s is an especially pertinent topic, given the rapid aging of the American (and global) population. But it is widely lamented that research on the disease remains woefully under-funded. According to figures from the National Institutes of Health (NIH), in 2013, $484 million was spent on Alzheimer’s research, versus the $5.6 billion spent on cancer research, the 1.2 billion spent on heart disease, and the 3.6 billion spent on rare diseases.
Many advocates—everymen and celebrities alike—are having trouble increasing awareness and support of the cause of the Alzheimer’s patient.
Just last week, comedian Seth Rogen travelled to Capitol Hill to testify before the Senate Committee on Appropriations on the dearth of funds devoted to Alzheimer’s research. His heartfelt testimony, inspired by his mother-in-law’s struggle with the disease, was met with dozens of empty chairs when only two committee members showed up to listen to him speak.
Rick Phelps, a former EMT who was diagnosed with Early-Onset Alzheimer’s disease (EOAD) at the age of 57 and currently travels the country speaking with everyone from lawmakers to schoolchildren about the challenges of the disease, says getting those in charge to stand up and take notice is an ongoing challenge. “This is the most unknown disease to mankind,” he says. “Getting more funding isn’t a Democrat versus Republican thing. Until we get more money, we’re just spinnin’.”
For his part, James hopes his team’s findings fortify the argument for investment in Alzheimer’s research by helping policymakers more accurately assess the true societal impact of the disease.
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