By: Carrie Esopenko, Andrea Kalvesmaki, Tristan Wimmer, Jess Collazo, Amanda Watsula, and Kristen Dams-O’Connor
More than 20 percent of adults in the United States have experienced at least one traumatic brain injury (TBI) in their lifetime. Among the military population, that percentage more than triples, with approximately 67 percent of veterans having experienced at least one TBI. And while history of TBI is associated with an increased risk of Alzheimer’s disease and other dementias, as well as a greater risk for suicide compared with the general population, evidence suggests that military veterans are also more likely to experience mental health challenges such as posttraumatic stress disorder (PTSD) and suicidal ideation following TBI, which may further jeopardize their long-term health and well-being.
Currently, medical researchers cannot predict recovery after TBI, but we know that the initial severity of a TBI does not accurately predict long-term outcomes over time. It is not known exactly how TBI contributes to neurological decline. Right now, there are no objective clinical assessments, blood tests, or imaging tests that can predict or track cognitive decline or mental health challenges such as suicide risk. This has made it difficult to develop treatments to optimize long-term brain health in both veteran and civilian populations.
Our team has taken on the task of addressing these gaps in knowledge regarding the long-term effects of TBI and mental health concerns. Through the “Leveraging Nationwide Research Infrastructure to Enrich (ENRICH) Brain Health Study” we are seeking to understand and improve long-term health after TBI. Across five distinct studies, we leverage existing research infrastructure including large-scale datasets, cohort studies, and brain autopsy archives to accelerate scientific discovery, improve early diagnosis, and help develop personalized treatments. Ultimately, we hope that this work will lead to measurable improvements in TBI care and identify new opportunities to optimize brain health and reduce the risk of suicide after TBI.
Lived Experience Guides Our Work
What sets this research apart is that our team has partnered with people who have lived experience with TBI, representatives from community-based organizations, and national TBI advocacy groups to refine and implement our research projects. The ENRICH study is grounded in community-based participatory research, a type of research that involves persons with lived experience, and members of the community who are affected by or concerned with a specific condition. This approach allows us to conduct scientifically rigorous research that addresses the key challenges that matter most to people with TBI, their loved ones, and those who serve them.
The Community Advisory Group for Enriched Brain Health allows the ENRICH project to have direct, real-time impacts on the health of civilians and veterans with TBI and their families. The Advisory Group is composed of 18 individuals with a variety of lived experiences with TBI. Our members include active-duty military service members and veterans, TBI advocates, members of TBI and veteran service organizations, people living with TBIs, caregivers, and experts in TBI, PTSD, and suicide.
Several members of the Advisory Group have personal experiences of living through TBI or supporting someone else with TBI. One group leader, Tristan Wimmer, a Marine veteran, has used his own family experience with the grief and raw pain following the loss of a brother to suicide. Tristan’s brother Kiernan sustained a massive TBI while serving in Al Anbar, Iraq, in 2006. Kiernan’s slow-motion deterioration and subsequent suicide in 2015 devastated his family. Tristan channeled that grief into action. As a military veteran, he has strengthened the Advisory Group through his personal and professional connections with the military community and provides guidance on how researchers can best interact with and serve veterans.
Including the lived experience perspective is not only part of the Advisory Group, but is also a key component of the four studies investigating the long-term effects of TBI and suicide risk in veterans.
Veteran and Military Brain Research
Our study has a unique interest in finding answers for veterans who are living with TBI. One project, The Late Effects of TBI in Military Service Members (LETBI-MIL) is focused on identifying the clinical features and postmortem signatures of post-TBI neurological change in veterans to inform new treatments and therapies.
TBI is considered the “signature wound of war” for veterans who have served since 2011 (post-9/11 veterans), and although veterans and service members make up a large majority of individuals with TBI, they remain an understudied population. Post-9/11 veterans are more likely to sustain injuries like TBI that require long-term care, are at elevated risk for homelessness and suicide, and are less likely than veterans of previous eras to use VA health services for their care. There is a great urgency to study this population as veterans from our most recent conflicts may be at higher risk of dementia if they have sustained a TBI.
The LETBI-MIL study was designed in direct response to veterans who asked our team, “Why isn’t anyone studying our brains?” Our team realized then that existing studies of TBI in military service members and veterans recruit exclusively from Veteran and Department of Defense care centers for TBI, which serve only a small fraction of those who sustain a TBI. Many veterans have TBIs that were never diagnosed or treated. A unique feature of LETBI-MIL is that we are partnering with veterans to recruit directly from the community to ensure our research is generalizable to most veterans living with TBI. The veterans on our research team expressed their desire to conserve the fighting force by supporting research that will help active-duty military members and veterans now and into the future.
