Stony Brook University 9/11 study: Dementia spike among Ground Zero responders

First responders at Ground Zero after 9/11 show a far higher rate of dementia than the general population and are a reminder of the ongoing “devastating consequences” from working at the pile, according to a new study led by Stony Brook University researchers.

Their study, published in the JAMA Network Open, an open-access medical research website, found that among about 5,000 responders followed over a five-year period, 228 developed dementia. Among the general population, experts would expect to find about five cases out of 5,000 similarly aged people, said Sean Clouston, a professor of public health at Stony Brook who co-led the study.

“This is a lot,” Clouston said of the 228 cases. Typically “this is an old person’s condition, like in your 70s or 80s.”

The average age of participants at the start of the study was 53 years old, Stony Brook said.

The 228 people who developed dementia represented 4.6% of the responders included in the study. In the general population of people under 60, the incidence of them developing dementia over five years of follow-up would only be about 0.5%, according to Clouston and the other researchers. 

They attributed the onset of early dementia to exposure to toxins at the site after the Twin Towers collapsed, unleashing pulverized parts of the buildings in thick smoke that lingered for months.

Those studied also included people who worked at related 9/11 cleanup sites in Manhattan and Staten Island.

Dementia is the latest illness doctors and others contend the responders are suffering from due to exposure to toxins at the site.

“These findings are a major step forward in establishing that the dust and toxins which were released as a result of the calamitous terrorist attacks on 9/11 continue to have devastating consequences on the responders,” said Dr. Benjamin Luft, co-author of the study and director of the Stony Brook World Trade Center Health and Wellness Program.

“The full extent of neurodegenerative disease still needs to be determined,” Luft said.

John Feal, a demolition supervisor from Long Island who was seriously injured in the rescue effort at Ground Zero, said the study confirmed what he and others have long known — the lingering and serious health problems that still exist among many who responded to the site and continue to die as a result.

“I’m not shocked or surprised. I’ve been saying this for a while,” said Feal, whose Nesconset-based FealGood Foundation advocates for Ground Zero first responders. The study “is a step in the right direction. We’re a finite number dying off. We’re losing men and women, in uniform and not in uniform, at a faster rate.”

The researchers found a sharp difference between responders who reported no dust exposure or who wore personalized protective equipment (PPEs) such as masks and hazmat suits, and those who didn’t.

In the first group, about five to six out of every 1,000 responders who were evaluated developed dementia each year. But for responders who did not use PPEs, and who reported dangerous occupational activities such as digging through Ground Zero debris, the dementia incidence rate reached 42.36 per 1,000 people each year, according to the Stony Brook study.

“This rate of dementia in those reporting many exposures and limited protection is not only statistically significant, it is alarming for a patient cohort that clearly shows a strong association between exposure and the incidence of dementia under the age of 65,” Clouston said in a later statement. “Also, the rates remained statistically significant over the less exposed group even after adjusting for social, medical, and demographic factors.”

Benjamin Chevat, executive director of Citizens for the Extension of the James Zadroga Act, a group that seeks more funding to assist Ground Zero responders, said the study shows the need for more support for them and their families.

The study “is a major step forward in establishing that the dust and toxins from 9/11" are leading to health problems for responders years later, Chevat said. " … the extent of neurodegenerative disease still needs to be determined. That is why the additional research and funding for the World Trade Center Health Program.”