Suspected CTE treatments
A comprehensive approach that addresses cognitive and physical symptoms.
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A comprehensive approach that addresses cognitive and physical symptoms.
Medically reviewed by Chris Nowinski, PhD
Co-founder and CEO, Concussion & CTE Foundation
There are many therapies available to treat the symptoms associated with suspected Chronic Traumatic Encephalopathy (CTE) that allow patients to have a better quality of life. Under the care of the right doctor, alongside lifestyle changes, most patients will see improvements.
We use the term “suspected” CTE because CTE cannot yet be diagnosed with a known level of statistical accuracy in living patients (learn how you can help advance CTE research by clicking here).
Therefore, treatments are focused on addressing your symptoms, whether they’re from CTE, concussions, or unrelated to your head impact history. We urge you to keep in mind that there is a significant chance you do not have CTE.
When it comes to choosing treatments, there have been very few scientific studies on how to treat the clinical symptoms of CTE and even fewer clinical trials exploring innovative therapies that could slow or stop the progression of the disease.
While the Concussion & CTE Foundation® works to grow the interest and infrastructure in CTE clinical trials, we’re here to tell you what’s working today, and how you can start to feel and live better.
In 2019, Concussion & CTE Foundation® co-founder and medical director Dr. Robert Cantu and Andrew Budson, Associate Director for Research at the Boston University Alzheimer's Disease Center, published the first ever CTE management recommendations in Expert Review of Neurotherapeutics.
The review is meant to assist clinicians in diagnosing CTE as unlikely, possible, or probable and suggests both nonpharmacologic and pharmacologic treatments for symptoms of CTE in order to help improve quality of life. You can view or download the abstract here to share with your doctor.
When treating suspected CTE symptoms, a clinician’s first step is to understand your exposure to repeated traumatic brain injuries and repetitive head impacts. More than 90% of individuals diagnosed with CTE experience repetitive head impacts through regular participation in contact sports and/or military service.
Studies of deceased American football players suggest that CTE is unlikely if an individual has not played for five years or more. Data is not yet available on other sports.
While CTE cannot be definitively diagnosed during life, experts led by the Boston University CTE Center are developing criteria for diagnosing Traumatic Encephalopathy Syndrome (TES), which is designed to capture the symptoms caused by CTE during life. Unfortunately, TES criteria are still limited to research studies, and not yet used by doctors.
Currently, the presence of CTE can only be established through a neuropathological examination after death. Research is ongoing to find biomarkers in the blood, as well as imaging techniques, that might allow for an earlier definitive diagnosis.
Clinicians currently rely on the patient’s clinical history and symptom presentation to establish a presumptive diagnosis. The process involves detailed interviews with the patient, and often family members, to piece together the history of head trauma and the timeline of symptom development.
Neurological examinations, cognitive tests, and functional capacity assessments can also help inform CTE’s likelihood.
The management of CTE symptoms requires a comprehensive approach that addresses both physical and cognitive symptoms. Individualized care plans focus on improving the quality of life for those affected, while cognitive therapies help improve functioning and assist individuals in adapting to their limitations.
Behavioral therapies have been proven to address the emotional and psychological challenges of suspected CTE, providing techniques to cope with mood swings, depression, and potential aggression.
Physical therapy also plays a pivotal role in managing motor symptoms, helping to preserve mobility and function.
According to Dr. Cantu, the pharmacological factors for managing CTE include a range of medications, each targeting specific symptom clusters.
Dr. James Castle is a Cognitive and Behavioral Neurologist at Rush University Medical Center who grew up on the football field from childhood through college. His personal experience with CTE, even before it was a known entity, began with the death of two teammates, one later confirmed to have CTE.
Heavily influenced by his personal connections and his own athletic history, he has made it his mission to observe and treat suspected CTE. One key component of his work has been identifying how suspected CTE presents differently across various age groups.
Younger suspected CTE patients
Younger individuals often encounter a cluster of behavioral issues, including anxiety, depression, rage, and sleep disturbances. Their cognitive challenges primarily involve short-term memory loss and difficulty in executive functions, which disrupt their daily living and normal activities.
Experts now believe that these symptoms are not primarily driven by CTE in most cases, if CTE is present at all. Instead, these symptoms are more likely to be related to suffering multiple concussions, or they could be unrelated to head impact history. That means these symptoms are not progressive and they should be treatable.
Older suspected CTE patients
Older patients often present with progressive cognitive impairments similar to Alzheimer’s disease, with pronounced memory deficits and a decline in cognitive abilities over time. These symptoms can pose significant complications in diagnosis, as they closely mimic other neurodegenerative conditions.
Dr. Castle promotes a comprehensive care strategy for younger individuals dealing with suspected CTE:
Lifestyle as CTE treatment
Lifestyle choices have a significant impact on brain health and overall well-being.
Importance of sleep
The link between sleep and cognitive health has been clearly established. Measures you can take to optimize your sleep include:
When searching for a specialist to help treat suspected CTE, look for a clinician who specializes in evaluating and treating brain disorders involving cognitive, mood, and behavioral difficulties. This doctor may be a neurologist (especially a cognitive or behavioral neurologist), a psychologist (especially a neuropsychologist), or a psychiatrist (especially a neuropsychiatrist).
Since CTE is a neurodegenerative disease, a clinician who specializes predominantly in concussions or traumatic brain injury may not be appropriate. Rather, a clinician who understands disorders such as Alzheimer's disease, frontotemporal dementia, and related conditions may be the better choice.
To learn about which type of doctor to see for suspected CTE, and what to discuss with your doctor, watch this video featuring Dr. Robert Stern, former director of clinical research at the Boston University CTE Center.
If you’re concerned about, or living with, suspected CTE and are struggling to find the right doctor, please reach out to the Concussion & CTE Foundation® HelpLine.
