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New form of dementia linked to 9/11 first responders

A New York Fire Department Deputy Chief at the World Trade Center after the 9/11 attacks. Stony Brook University researchers may have a new form of dementia in 9/11 responders stemming from early-onset cognitive impairments. PUBLIC DOMAIN

A study conducted by Stony Brook University researchers revealed that World Trade Center (WTC) responders with early-onset cognitive impairment may have a new form of dementia.

The study included 99 WTC responders with an average age of 56. All participants had cognitive impairments and PTSD. After their brains were examined, results showed that the higher the cognitive impairment and PTSD status, the lower the connection between brain cells, resulting in slower cognitive functioning. 

According to Sean Clouston — one of the authors of the study, “DTI Connectometry Analysis Reveals White Matter Changes in Cognitively Impaired World Trade Center Responders at Midlife” — this new form of dementia is characterized by physical and cognitive deterioration. 

“You see physical slowing, slower walking and difficulty getting out of a chair or moving around, as well as weaker muscle strength,” Clouston said. “This is similar, in some ways, to what you see in movement disorders.” 

A major roadblock in Clouston’s research has been narrowing down participants. 

“Errors may include a failure to identify the patients appropriately or we over-select people with other diseases,” he said. “There is some evidence that some of the healthy controls in the study might have either not been as healthy as we had hoped, and that some of the impaired participants might have Alzheimer’s disease more akin to those kinds you would see in other patients.”

Clouston says that the margin of error was very small. The hope with this type of study and research was to explain why this specific type of dementia is specifically affecting WTC responders.

“We think that some people had a physical exposure to very fine neurotoxic dust while working at the WTC and that others had a psychological reaction that has either caused its own neurological problems or might have exacerbated the prior dust exposure,” Clouston said. “We are still working on understanding this phenomenon but we hope to have a better sense of this problem in the near future.”

Overall, the study shows that dementia due to PTSD is clearly different from non-PTSD dementia in WTC responders. However, the specific differences and reason for this contrast is still unclear. Future research aims to further explore this, in order to develop more specific, customized, and improved treatments for patients.

This kind of research has had a large impact on families suffering from members with dementia. According to the World Health Organization, 55 million people worldwide are suffering from dementia. 

“My grandpa recently has been diagnosed with dementia,” Kohei Kurihara, a sophomore studying health science, said. “He’s 89 now and so far he only has minor difficulties like forgetting what he did in the past five minutes or so, but sometimes he’ll forget what he did in his lifetime. Like questioning if I had a brother and his age.” 

Alex Kutsupis, a 2021 Stony Brook alumni, also has a grandfather suffering from dementia. He said the early symptoms — which started in 2009 — pertained to difficulty “reading maps and navigating on his boat,” according to Kutsupis. 

“Over a period of several years, it [dementia] devolved into Alzheimer’s,” Kutsupis said. “He could not remember who his own family members were, not even his wife. He became almost vegetative. It was a difficult transition to watch.” 

The most difficult part of his grandfather’s dementia was watching him suffer. 

“By 2015, there wasn’t very much of my grandfather left in him,” Kutsupis said. “He was still living, but living as a husk of his former self. I found myself pitying him. This was not the life he wanted to live, nor was it a fitting end for the life he had lived. When he finally died in 2019, I felt more relieved than anything else. He was finally free of the torment of living trapped in his body, unable to think.”

According to a Science Direct study, out of 813 WTC responders, 1.2% had possible dementia and 12.8% had cognitive impairment. 

Clouston stated that he and his team are continuing to do various studies similar to ones that are focusing on neuroimaging, particularly on the distribution of certain neurotoxins in the brain. They hope to further investigate the link between WTC survivors and their onset of dementia.

“This study is ongoing and I hope to be able to report its results in the near future,”  Clouston said.

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