Pánfila Domestic Violence HOPE Foundation

Brain Donation Initiative

"There is a critical need to understand more about how violent and assaultive behaviors affect the brain. This is especially true for women as, historically, there have been very few brain donations from women who have suffered domestic violence or other traumatic brain injuries. Brain donation is an important way to advance science as well as help others who have experienced similar brain trauma."

The DV-Related TBI Connection

human brain       

According to the Centers for Disease Control, there are nearly 3 million head injuries reported every year in the US.[i] [ii] The impact of brain trauma on athletes and military veterans is well established, and the public is aware of the risks associated with contact sports and military combat. However, data on the domestic violence population affected by traumatic brain injury is not routinely or systemically collected or tracked.

The preliminary evidence is strong that domestic violence-related brain injury is a significant public health epidemic.  Better understanding of the role of brain trauma in the cycle of domestic violence will allow for the development of effective approaches to reduce the occurrence.

Women

One in 4 women will experience domestic violence in their lifetime.[iii] The rate is even higher for immigrant women, women of color, lesbian and bisexual women, transgender individuals, and other members of vulnerable or underserved communities due to systemic and institutional racism, discrimination, and other social injustice issues. Specifically, immigrant women, like María Pánfila, are more likely than any other category of women in the US to experience domestic violence. Evidence also suggests that the severity of violence against immigrant women may be greater than for any other categories of women.[iv] Among the Black community,  the Black Women’s Health Project determined that domestic violence is the number one health issue facing Black women.

Minimal research has been conducted in domestic violence-related TBI. In 2002, [v] a study of women in three domestic violence shelters found:

  • 92 percent had been hit in the head by their partners, most more than once;
  • 83 percent had been both hit in the head and severely shaken; and; and
  • 8 percent of them had been hit in the head over 20 times in the past year.

It is important to note that it is unclear if women of color and other vulnerable categories of women where included in this study. 

Nonetheless, together, these statistics amount to approximately 30 million women experiencing domestic violence, of which 20 million show signs of trauma to their brain.

Children

There is a higher overlap of violence against children and violence against women in the same families. Research shows that in 70 percent of homes where women are beaten, children are also beaten.[vi] As many as 15.5 million American children — girls and boys — live in families in which domestic violence has occurred during the past year[vii]. Damage to the brain from childhood abuse is relevant to understanding the cycles of domestic violence. Studies show that the most consistent predictor of domestic violence is having experienced abuse as a child.[viii] Further research will distinguish whether this pattern or perpetuated violence between generations is based on emotional effects or traumatic injury to the brain.

Men

One in 7 men experience severe physical violence by an intimate partner. However, the incidence of brain trauma among men who have experienced domestic violence – whether from a parent/guardian or from an intimate partner — has not been studied in-depth.  Among men who engage in abusive behaviors, a groundbreaking study found that 61 percent had histories of traumatic brain injury.[ix] A follow-up study found that 93 percent of domestic violence abusers with head injury were injured prior to the first occurrence of marital abuse, with 74 percent of these men experiencing traumatic brain injury before the age of 16.[x]

Pánfila Domestic Violence HOPE Foundation
Brain Donation Initiative

Pánfila and the BU CTE Center and VA-BU-CLF Brain Bank are responding to the urgent call for action with the Pánfila Domestic Violence HOPE Foundation Brain Donation Initiative, which will enable scientific research by encouraging brain donations and future pledges for brain donation. Advancing science is a foundational objective that is critical for launching a nationwide, comprehensive public health education campaign designed to improve quality of life for those impacted by domestic violence.

Pánfila’s highest scientific priority is to promote brain donation for research by domestic violence survivors. Additional research is needed to further characterize the relationship between domestic violence and the resulting neuropathology, including CTE.

Pánfila Domestic Violence HOPE Foundation is supporting this research by affiliating with the BU CTE Center and VA-BU-CLF Brain Bank to encourage brain donation. Brain donation will enable a comprehensive post-mortem brain analysis by a team of experienced neuropathologists at the VA Boston Healthcare System and Boston University School of Medicine. Currently, CTE and many other neurodegenerative diseases can only be diagnosed by post-mortem examination of brain tissue.

The Pánfila Domestic Violence HOPE Foundation will support the BU CTE Center, the VA-BU-CLF Brain Bank and other scientific institutions with the following efforts:

  • Encourage brain donation by domestic violence survivors and facilitate future brain donation pledges
  • Compile research-based evidence of connection between abuse and neuropathological injury
  • Educate physicians and emergency room personnel to identify domestic violence and related brain injury
  • Help develop potential treatments and prevention strategies for domestic violence-based neurotrauma
  • Advance scientific knowledge and public awareness of relationship between domestic violence and brain pathology
  • Advocate for survivors of domestic violence

The BU CTE Center and VA-BU-CLF Brain Bank conduct high-impact, innovative research on CTE and neurodegenerative diseases resulting from brain trauma in athletes, military personnel and survivors of domestic violence. Their mission is to conduct research on aspects of CTE and other neurodegenerative diseases including neuropathology, pathogenesis, clinical presentation, risk factors, genetics, biomarkers, detection during life and methods of prevention and treatment.

A Precious Gift

Without the gift of brain donation, research to understand the consequences of brain trauma would not be possible. The identity of donors is confidential and protected by IRB rules and HIPAA laws. Through this research, increased public awareness of the relationship between domestic violence and brain trauma will encourage efforts to end domestic violence. There is no cost to the families for brain donation to the BU CTE Center and VA-BU-CLF rain Bank. All funding to the BU CTE Center and VA-BU-CLF is through grants from federal agencies, private philanthropy and institutional support from VA Boston Healthcare System and Boston University School of Medicine.

The identity of donors is confidential and protected by both IRB rules and HIPAA laws. However, many donors have chosen to allow the CTE Center to release their names to draw attention to this important work.

For urgent brain donation matters, please call the BU CTE Center’s 24/7 voicemail/pager at 617-992-0615.

For general brain donation inquiries, please contact:

Evan Nair by phone at 617-358-5996 or Madeline Uretsky by phone at 617-358-6027.

What is CTE?

Chronic Traumatic Encephalopathy  is a progressive degenerative disease of the brain found in people with a history of repetitive brain trauma, including symptomatic concussions as well as asymptomatic subconcussive hits to the head that do not cause symptoms. CTE has been known to affect boxers since the 1920’s when it was initially termed “punch drunk syndrome.”[xi]

In 1937, the term “dementia pugilistica” was introduced. [xii]  Over a decade later, in the first of two important studies on TBI in boxers in 1949, the term punch drunk syndrome was dropped in favor of “chronic progressive traumatic encephalopathy,”[xiii, xiv] now widely referred to as CTE. 

In recent years, reports have been published of neuropathologically confirmed CTE found in other athletes, including football and hockey players (playing and retired), as well as in military veterans who have a history of repetitive brain trauma. 

CTE is not limited to current professional athletes; it has also been found in athletes who did not play sports after high school or college.

The repeated brain trauma triggers progressive degeneration of the brain tissue, including the build-up of an abnormal protein called tau. These changes in the brain can begin months, years, or even decades after the last brain trauma or end of active athletic involvement.

The brain degeneration is associated with common symptoms of CTE including memory loss, confusion, impaired judgment, impulse control problems, aggression, depression, suicidality, Parkinsonism, and eventually progressive dementia.

Domestic Violence and CTE

There are only a few domestic violence brains that have been postmortem examined for CTE. The first case was documented in 1990 in a letter, titled “Dementia in a Punch-Drunk Wife,” in The Lancet.[xv] It profiled a 76-year-old woman whose relatives reported that her husband had been violent towards her for many years and she was often seen with cuts and bruises. The woman was admitted to hospital unconscious after being found at home with multiple injuries. She had rib fractures, multiple bruises and abrasions to the head, and signs of left-sided weakness. She had a history of a stroke and had become demented over the past few years. She died in the hospital 10 months after admission and necropsy revealed abnormal thickening of the ears, resembling the “cauliflower ears” of pugilists. The letter was followed by a post-mortem description of a battered woman with a pathology found in deceased boxers with CTE.

The Lancet connected two patient populations—boxers and domestic violence victims—together for the first time to punch-drunk disease. Both conditions, then referred to as punch-drunk disease and battered woman syndrome respectively, linked domestic violence and CTE. However, this unprecedented finding was not met with the same level of advocacy, attention, and allocation of resources that contact sports and military received when CTE was found among these respective populations. In fact, little advocacy took place to focus on it.

At both the national and global levels, few ever speak about the silent and unrecognized epidemic of TBI and CTE in the domestic violence population. Among researchers and the healthcare field at large, this area of science has received minimal to no attention despite the historic high rates of domestic violence and even higher ones during the Shadow Pandemic amidst the Covid-19 Pandemic. 

Pánfila Domestic Violence HOPE Foundation and its partners will reverse this trajectory so that all individuals suffering from DV-related TBI and CTE can finally receive needed information, resources, and treatments.

Further information is available at the CTE Center’s website: www.bu.edu/cte/

What is TBI?

For more information about Traumatic Brain Injury please click here.

Footnotes

[i] Taylor CA, Bell JM, Breiding MJ, Xu L. Traumatic Brain Injury–Related Emergency Department Visits, Hospitalizations, and Deaths — United States, 2007 and 2013. MMWR Surveill Summ 2017, 66(No. SS-9):1–16. DOI: http://dx.doi.org/10.15585/mmwr.ss6609a1

[ii] Centers for Disease Control and Prevention (2019). Surveillance Report of Traumatic Brain Injury-related Emergency Department Visits, Hospitalizations, and Deaths—United States, 2014. Centers for Disease Control and Prevention, U.S. Department of Health and Human Services.

[iii] Smith, S.G., Chen, J., Basile, K.C., Gilbert, L.K., Merrick, M.T., Patel, N., Walling, M., & Jain, A. (2017). The National Intimate Partner and Sexual Violence Survey (NISVS): 2010-2012 State Report. Atlanta, GA: National Center for Injury Prevention and Control, Centers for Disease Control and Prevention. Retrieved from https://www.cdc.gov/violenceprevention/pdf/NISVS-StateReportBook.pdf

[iv] Leigh Goodmark, L. (2004). Law Is the Answer? Do We Know That for Sure? Questioning the Efficacy of Legal Interventions for Battered Women, 23 ST. LOUIS U. PUB. L. REV. 7, 35-36.

[v]Jackson, H., Philp, E., Nuttall, R.L. & Diller, L. (2002). Traumatic Brain Injury: A Hidden Consequence for Battered Women. Professional Psychology: Research & Practice, 33, 1, 39-45.

[vi] McDonald, R., Jouriles, E.N., Ramisetty-Mikler, S., Caetano, R., & Green, C.E. (2006). Estimating the number of American children living in partner-violent families. Journal of Family Psychology, 20, 137–142.

[vii] Hamby, S., Finkelhor, D., Turner, H. & Ormrod, R. (2011). Children’s Exposure to Intimate Partner Violence and Other Family Violence. U.S. Department of Justice. Retrieved from https://www.ncjrs.gov/pdffiles1/ojjdp/232272.pdf

[viii] Wolfe, D.A.,Wekerle, C., Reitzel, D. & Gough, R. (1995). Strategies to address violence in the lives of high risk youth. In Peled, E., Jaffe, P.G., & Edleson, J.L., (Eds.) Ending the Cycle of Violence: Community Responses to Children of Battered Women. New York: Sage Publications.]

[ix] Rosenbaum, A. & Hoge, S.K. (1989). Head injury and marital aggression. American Journal of Psychiatry, 146(8):1048–1051.

[x] Rosenbaum, A., Hoge S.K., Adelman, S.A., Warnken, W.J., Fletcher, K.E., & Kane, R.L. (1994). Head injury in partner-abusive men. Journal of Consulting and Clinical Psychology, 62(6), 1187–1193.

[xi] Changa, A.R., Vietrogoski, R.A., & Carmel, P.W. (2018). Dr. Harrison Martland and the history of punch-drunk syndrome. Brain141(1), 318–32. Retrieved from https://doi.org/10.1093/brain/awx349

[xii] Millspaugh, J.A. (1937). Dementia pugilistica. U S Naval Medical Bulletin, 35, 297–303.

[xiii] Critchley, M. (1949). Punch drunk syndrome: the chronic encephalopathy of boxers. In Neurochirurgie Hommage à Clovis Vincent. Paris: Maloine. In I. Donaldson, C. Marsden, S. Schneider, & K. Bhatia (Eds.) (2012). Marsden’s book of movement disorders (637). London: Oxford University Press.

[xiv] Critchley, M. (1957). Medical aspects of boxing, particularly from a neurological standpoint. British Medical Journal, 1(5015), 357–362. doi:10.1136/bmj.1.5015.357

[xv] Roberts, G. W., H. L. Whitwell, Peter R. Acland, & C. J. Bruton., (1990). Dementia in a punch-drunk wife. Lancet, 335 (8694), 918–919.