Deaths from Alzheimer’s disease may be underreported.

The U.S. Centers for Disease Control and Prevention (CDC) estimates that in 2010, nearly 83,500 people died of Alzheimer’s disease.

But that number may actually be much higher. A study published in the March 25, 2014, issue of Neurology, the medical journal of the American Academy of Neurology, suggests that more deaths can be attributed to Alzheimer’s disease than are reported on death certificates.

“In my opinion, there are probably many reasons for not reporting Alzheimer’s as the primary cause of death, from lack of knowledge and awareness of the patient’s Alzheimer’s
disease as an important cause or contributor to death, to focus on the immediate cause of death rather than the underlying causes,” says Kaycee M. Sink, MD, MAS, Director, Kulynych Memory Assessment Clinic and Associate Professor of Medicine/Geriatrics with Wake Forest Baptist Medical Center in Winston-Salem, N.C.

At the end stages of Alzheimer’s, Dr. Sink says, people often have difficulty swallowing because the brain doesn’t tell the mouth and tongue what to do with food in order to chew and swallow correctly. They lose their appetite, and therefore lose weight. “With progressive weight loss and malnutrition, people with end-stage Alzheimer’s are more susceptible to infections like pneumonia and complications like pressure ulcers,” she says.

The most common cause of death for a person with Alzheimer’s, she adds, is pneumonia. In cases such as this, pneumonia is usually listed on the death certificate as the cause of death, rather than Alzheimer’s.

Is Alzheimer’s the Cause?

There is a difference, though, between dying OF Alzheimer’s and dying WITH Alzheimer’s, Dr. Sink notes.

“Many people with Alzheimer’s will die of causes unrelated to their Alzheimer’s disease,” she says. “For example, someone with mild Alzheimer’s might also have high blood pressure and high cholesterol. If he dies of a heart attack, he died WITH Alzheimer’s disease, not OF it. The cause of his death had nothing to do with Alzheimer’s.”

Often, though, for families who have watched loved ones suffer from Alzheimer’s, not seeing it listed on the death certificate feels like a disservice.

“It’s been my experience with families of patients who’ve died from any cause, that the death certificate and what it says has significant meaning to them,” says Dr. Sink. “Accuracy of death certificates is really important, not only for families but also for research. A lot of research gets done using death records, and the scientific community could be drawing wrong conclusions if the data used is not correct.”

Under-diagnosis

For families who have watched loved ones suffer from Alzheimer’s, not seeing it listed on the death certificate can feel like a disservice.

There’s also the problem of Alzheimer’s disease going undiagnosed—whether from lack of access to medical care, lack of knowledge, fear of stigma or, simply, denial.

“Many, many people with Alzheimer’s go undiagnosed, and the reasons vary from family to family,” says Dr. Sink. “For some, it’s a lack of knowledge; they assume the changes they’re seeing in memory and behavior are ‘normal aging’. For others, it may be that they don’t want to give Grandma a diagnosis because there’s no cure—‘so what’s the point?’ And for others, it may be not wanting the stigma of what has traditionally been a mental health diagnosis.

“I hope that someday people will view Alzheimer’s like any other medical condition. No one is ashamed when they are diagnosed with diabetes or cancer. Alzheimer’s should be viewed like that.”

How Many Americans Have Alzheimer’s Disease?
Estimates vary, but experts suggest that as many as 5 million Americans age 65 and older have Alzheimer’s disease. Unless the disease can be effectively treated or prevented, the number of people with it will increase significantly if current population trends continue. That’s because the risk of Alzheimer’s increases with age, and the U.S. population is aging. The number of people with Alzheimer’s doubles for every 5-year interval beyond age 65.

How Long Can a Person Live with Alzheimer’s Disease?
Alzheimer’s is a slow disease that progresses in three stages—an early, preclinical stage with no symptoms; a middle stage of mild cognitive impairment; and a final stage of Alzheimer’s dementia. The time from diagnosis to death varies—as little as 3 or 4 years if the person is older than 80 when diagnosed, to as long as 10 or more years if the person is younger.

Source: National Institute on Aging, Alzheimer’s Disease Education and Referral Center