Dementia is steadily rising in the ranks of causes of death in America, according to a new report released by the National Center for Health Statistics. The most sobering statistic: The rate of Americans who died from dementia has increased from 30.5 deaths per 100,000 people in 2000 to 66.7 in 2017, more than doubling in less than twenty years.
Data on dementia deaths was gleaned from death certificates. The analysis showed that dementia was attributed as the cause of death in about 262,000 people in 2017 alone, with 46 percent of those identified as Alzheimer’s disease. In 2000, 84,000 deaths were attributed to dementia.
In 2017, Alzheimer’s, which primarily occurs in people over the age of 65, was the sixth leading cause of death for Americans, according to the report. But when other neurodegenerative diseases are considered, that ranking rises. “If all four dementia causes were counted together, dementia would have been the third leading cause of death in the United States in 2017,” wrote the researchers.
The researchers used the term dementia to cover a broad range of conditions, including Alzheimer’s, the most common type of dementia, and other lesser-known dementias like Lewy body disease, frontotemporal dementia and vascular dementia. Although types of dementia vary in how they present in the brain, patients are often misdiagnosed—in part because it’s difficult to get a definitive diagnosis without a PET scan, which is not covered by insurance. The misdiagnosis is part of the reason it’s difficult to track dementia’s reach, according to the researchers.
“Identifying causes of death for people with dementia is challenging,” they wrote. “In addition to the complexity of diagnosing Alzheimer’s disease and other dementias before death, determining the underlying cause of death can be affected by the completeness and accuracy of cause-of-death statements recorded on death certificates and the increasing number of conditions present at death as the population ages.”
The report underscores what some people don’t realize about dementia: It’s not just memory loss; it’s a fatal disease. But why are rates rising?
In part because of age, according to the study. “As the population ages and mortality due to other chronic diseases (e.g., heart disease) declines, a larger proportion survives to ages where the risk for dementia is highest. This may explain, in part, the observed increase since 2000,” wrote the report authors.
And with a population that continues to age, experts expect that the numbers will only continue to rise. The report estimates that almost a quarter of the population—23.5 percent—will be over 65 by 2060. By then, 14 million people in the U.S. could have Alzheimer’s and dementia.
What can people do to help stop the dementia wave? Experts say that clinical trials that aim to treat the causes of dementia decades before they start causing symptoms like memory loss are the best way to fight back. And you don’t have to have a diagnosis to participate.
“One of the biggest misconceptions about clinical trials is that they need volunteers who are already ill,” Jessica Langbaum, a specialist in Alzheimer’s prevention at the Banner Alzheimer’s Institute, told Being Patient. “On the contrary, much of the Alzheimer’s research on the horizon needs substantial numbers of volunteers without symptoms because the scientific focus is on preventing the disease before symptoms appear.”
Currently, over 200 clinical studies in the U.S. are accepting volunteers. The Alzheimer’s Prevention Registry, which connects volunteers with scientists conducting research, is one way to get involved in a study.