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       

Today, traumatic brain injury (TBI) and chronic traumatic encephalopathy (CTE) conjure up several stark images of dramatic hits to the head from combat and collision sports, a downward spiral into depression, dementia, rage, and tragically, suicide.[i] There is also an emerging and frightening realization that repeated concussions have an enduring and potentially devasting effect on our children that participate in contact sports.[ii] In the United States (US), approximately 2.5 million head injuries are reported annually.[iii] However, these numbers underestimate the occurrence of TBIs because they do not account for those persons who did not receive medical care, had outpatient or office-based visits, or those who received care at a federal facility, such as persons serving in the US military or those seeking care at a veterans affairs hospital.[iv]

Women

While much of the focus on TBI has centered on athletes and military veterans, emerging data indicates that DV victims constitute an under-represented cohort. One in four women will experience DV in their lifetime[v] with higher rates among African American,[vi] immigrant,[vii] Native American[viii], and other ethnic minority and marginalized women due to social injustice issues.[ix] The COVID Pandemic resulted in even higher incidences of DV in the US and world-wide due to a variety of variables associated with confinement.[x] [xi]

The minimal research conducted among female domestic violence victims reporting TBI is telling. In 2002, a study of women in three domestic violence shelters found [xii]:

  • 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.

Together, these statistics amount to approximately 30 million women experiencing DV, of which 20 million demonstrate signs of TBI. Alone, this is 11-12 times greater than the published incidence of TBI.

Children

Moreover, in up to 60 percent of homes where women are beaten, children are also beaten.[xiii] As many as 15.5 million American children live in families in which DV has occurred during the past year.[xiv] It is estimated that of the children who suffer abuse, over 60 percent of them also experience TBI.[xv] Children have the highest rate of emergency department visits for TBI of all age groups. Traumatic brain injury is the leading cause of death in injured children.[xvi] Additionally, the most consistent predictor of domestic violence is having experienced abuse as a child[xvii], compounded with the enduring emotional symptoms of TBI is increased aggression, which further impacts future generations and communities at large. Further research will distinguish whether this pattern or perpetuated violence between generations is based on emotional effects or traumatic injury to the brain.

Men

Furthermore, one in seven men will experience severe physical violence by an intimate partner.[xviii], 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 domestic violence behavior, a study found that 61 percent had histories of head injury.[xix] A follow-up study found that an overwhelming majority, 93 percent, of head-injured domestic violence abusers had endured their head injury prior to the first occurrence of marital abuse, with 74 percent of these men receiving the head injury before the age of 16.[xx]

Thus, domestic violence intensifies the impact of TBI as a healthcare epidemic. However, this is just the tip of the iceberg as these low numbers do not account for the 75 percent of DV cases that go unreported.[xxi]

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. However, we are strategically seeking to collaborate with other institutions passionate about developing specific brain bank/s for DV-related TBI victims.  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 (CTE) 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.”[xxii]

In 1937, the term “dementia pugilistica” was introduced. [xxiii]  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,”[xxiv, xxv] 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.[xxvi] 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] Peskind, E. R., Brody, D., Cernak, I., McKee, A., & Ruff, R. L. (2013). Military- and sports-related mild traumatic brain injury: clinical presentation, management, and long-term consequences. The Journal of clinical psychiatry74(2), 180–188. https://doi.org/10.4088/JCP.12011co1c

[ii] Waltzman, D., Womack, L. S., Thomas, K. E., & Sarmiento, K. (2020). Trends in Emergency Department Visits for Contact Sports-Related Traumatic Brain Injuries Among Children – United States, 2001-2018. MMWR. Morbidity and mortality weekly report69(27), 870–874. https://doi.org/10.15585/mmwr.mm6927a4

[iii] 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.

[iv] Faul, M., Xu, L., Wald, M.M., and Coronado, V.G. (2010). Traumatic brain injury in the United States: Emergency department visits, hospitalizations, and deaths 2002–2006. Atlanta, GA: Centers for Disease Control and Prevention, National Center for Injury Prevention and Control.

[v] Black, M.C., Basile, K.C., Breiding, M.J., Smith, S.G., Walters, M.L., Merrick, M.T., Chen, J., & Stevens, M.R. (2011). The National Intimate Partner and Sexual Violence Survey (NISVS): 2010 Summary 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_Report2010-a.pdf

[vi] 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: National Center for Injury Prevention and Control, Centers for Disease Control and Prevention. Retrieved from https://www.cdc.gov/violenceprevention/pdf/NISVSStateReportBook.pdf.

[vii] Orloff, L.E., Jang, D. & Klein, C.F. (1995). With No Place to Turn: Improving Advocacy for Battered Immigrant Women. Family Law Quarterly. 29(2):313.

[viii] Rosay, André B., Violence Against American Indian and Alaska Native Women and Men: 2010 Findings from the National Intimate Partner and Sexual Violence Survey. Washington, D.C.: U.S. Department of Justice, National Institute of Justice, 2016, NCJ 249736.

[ix] Stockman, J. K., Hayashi, H., & Campbell, J. C. (2015). Intimate Partner Violence and its Health Impact on Ethnic Minority Women [corrected]. Journal of women’s health (2002)24(1), 62–79. https://doi.org/10.1089/jwh.2014.4879

[x] UN Women (2020). Intensification of efforts to eliminate all forms of violence against women: Report of the Secretary-General (2020). Retrieved from https://www.unwomen.org/en/digital-library/publications/2020/07/a-75-274-sg-report-ending-violence-against-women-and-girls

[xi] UN Women and UNDP (2021). COVID-19 Global Gender Response Tracker. Retrieved from https://data.undp.org/gendertracker/

[xii]  Jackson, H., Philp, E., Nuttall, R.L. & Diller, L. (2002). Traumatic Brain Injury: A Hidden Consequence for Battered Women. Professional Psychology: Research & Practice33, 1, 39-45.

[xiii] Kelleher, K., Gardner, W., Coben, J., Barth, R., Edleson, J. L., & Hazen, A. (2012). Children and Domestic Violence Services (CADVS) Study: Co-Occurring Intimate Partner Violence and Child Maltreatment in the United States, 2003-2004. Inter-university Consortium for Political and Social Research, 2012-02-29. https://doi.org/10.3886/ICPSR04569.v1

[xiv] McDonald R, Jouriles EN, Ramisetty-Mikler S, Caetano R, Green CE. Estimating the number of American children living in partner-violent families. J Fam Psychol. 2006 Mar;20(1):137-142. doi: 10.1037/0893-3200.20.1.137. PMID: 16569098.

[xv] Theodorou, C.M., Nuño, M., Yamashiro, K.J., & Brown, E.G. (2021). Increased mortality in very young children with traumatic brain injury due to abuse: A nationwide analysis of 10,965 patients. Journal of Pediatric Surgery, 56(6):1174-1179. doi: 10.1016/j.jpedsurg.2021.02.044. Epub 2021 Feb 24. PMID: 33752910; PMCID: PMC8131228.

[xvi] Araki, T., Yokota, H., & Morita, A. (2017). Pediatric Traumatic Brain Injury: Characteristic Features, Diagnosis, and Management. Neurologia medico-chirurgica57(2), 82–93. https://doi.org/10.2176/nmc.ra.2016-0191

[xvii] Holt, S., Buckley, H., & Whelan, S. (2008). The impact of exposure to domestic violence on children and young people: A review of the literature. Child Abuse and Neglect, 32(8), 797-810. https://doi.org/10.1016/j.chiabu.2008.02.004

[xviii] 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.

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

[xx] 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.

[xxi] Tjaden, P. G. & Thoennes, N. (2000). Extent, nature, and consequences of intimate partner violence. National Violence Against Women Survey, National Institute of Justice (U.S.). Retrieved from https://stacks.cdc.gov/view/cdc/21858

[xxii] 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

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

[xiv] 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.

[xv] 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

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