My father has dementia. The handsome young man who left before I was born, the pleasant, elusive fellow I have only met a few times in my life, struggles now to remember names and understand context. I got the news via a long-lost cousin recently, just a few days after my mother died after her own lengthy and painful journey through Alzheimer’s. But my father’s neurological path has been very different from my mom’s, and it provides different warnings and lessons. It seems he didn’t inherit his condition. He didn’t develop it as an inevitable consequence of extreme old age either, because he’s not that old. Instead, it turns out that the seed of his disease was planted long ago.
My mother’s descent was part of a terrifying family legacy. Her sister started showing signs of early onset Alzheimer’s when she was in her fifties, as did her elder brother. My mother-in-law’s dementia, meanwhile, seems likely a result of her advanced age and the isolation of a pandemic that gifted her with COVID — twice. This was, I had assumed, how dementia happens for most people, via genetics and time. I didn’t realize how great the other risks are, even for those of us who aren’t boxers or football players. My father’s dementia is from head injury.
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I knew about chronic traumatic encephalopathy (CTE). In recent years, it’s been the subject of intense scrutiny and calls for serious reform across a variety of sports. There was the case of Aaron Hernandez, the former New England Patriots tight end and convicted murderer who died by suicide at the age of 27 in 2017. After his autopsy, researchers declared he was suffering “the most severe case of chronic traumatic encephalopathy ever discovered in a person his age, damage that would have significantly affected his decision-making, judgment and cognition.” That same year, a study by neuropathologist Dr. Ann McKeen found evidence of CTE in 99% of the deceased former National Football League players’ brains studied. More recently, there was former NFL player Phillip Adams, who last April shot and killed six people before turning the gun on himself. A posthumous brain examination “showed significantly dense lesions in both frontal lobes, an abnormally severe diagnosis for a person in his thirties.”
My father was not a professional athlete. As far as I know, he never played any team sports at all. When my cousin reached out to me last month, she explained that his neurologist’s diagnosis was that the dementia was the result of a variety of head injuries throughout his life, including a car accident he survived in his twenties. I had mistakenly presumed that long term damage of blows to the head was always the result of sustained and repetitive punishment. I’d read so much about athletic young men in their prime dying with neurodegenerative conditions that made their brains appear much, much older and sicker. It hadn’t occurred to me that anyone with a skull, at any age, might be vulnerable as well.
As the Alzheimer’s Association explains, “Certain types of traumatic brain injury may increase the risk of developing Alzheimer’s or another type of dementia years after the injury takes place.” In other words, while “There’s no evidence that a single mild traumatic brain injury increases dementia risk,” you don’t need be out on the field every Monday night for years either. You don’t have to have been in a life-threatening accident. A 2018 study of military veterans found that “Even mild TBI [traumatic brain injury] without loss of consciousness was associated with more than a 2-fold increase in the risk of dementia diagnosis.”
Reframing the risks for dementia can be especially important for women, who are twice as likely as men to be diagnosed with the condition. It matters because while we may as a whole spend less time in the boxing ring, we are far more likely to experience intimate partner violence. Back in 2018, Toronto Western Research Institute senior scientist Dr. Don Weaver noted his research on the connection between domestic abuse and dementia in Canada’s National Post, writing, “One case-control study that I carried out with colleagues shows that spousal abuse could be associated with the development of Alzheimer’s.”
As awareness of the devastating neurological consequences of head injuries, regardless of age, increases, there’s the potential to misdirect our efforts. As NPR reported in December, “a quiet population of everyday men and women who never played professional sports fear they have the disease [CTE]. Frantic for a cure, they often turn to dubious treatments, controversial doctors or health care providers with financial stakes in the products they recommend .… from cannabis to neurological chiropractors.” Unsurprisingly, they note, “the loosely regulated brain health industry is profiting.”
While there are promising treatments and clinical studies to slow down the effects of dementia, there is no cure. Understanding the potential long term consequences of head injuries, and doing our best to avoid them, remains our best option for a healthy brain. We can’t prevent every fall or every crash, but we can wear our seat belts and our bike helmets, and talk to our doctors about events in our pasts that may affect our cognitive futures. My neurologist and I have had plenty of discussions about my grim family history, but now I see how it wouldn’t hurt to bring up that old skiing accident too.
I doubt my father ever had the slightest idea that a car wreck he lived through decades ago would come back to haunt him now. I wonder if he had, what might have been done earlier to mitigate his symptoms? My cousin sent me a photo yesterday of him at his wife’s recent funeral. He looks elegant in his black suit. And more than that, he looks so sad, and so very lost.
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