The violence began long before Freya Doe* married at 18 – and it quickly escalated. “It was what I thought love was,” she says, speaking on Zoom from her home in the US. On one occasion, her husband punched her in the face, threw her off a porch, and repeatedly slammed her head on the ground. He threatened her with one of the several guns he owned then strangled her until she lost consciousness. When she came to, he was talking on the phone, saying: “I finally did it. I finally killed the bitch.”
Blood vessels in her eyes had burst. She was in hospital for a week. Twenty-two X-rays were taken of her head, neck, back and chest. “I was told the migraines would go away. They didn’t,” she says.
Doe left her husband after 18 months. “He slams your head against a wall – which he used to do a lot – and a couple of days later, he [does it] again. Your brain doesn’t have time to recover from those traumas.” Fifteen years later, in her 30s, Doe thought she was experiencing early onset dementia. She would forget words and suffer from anxiety and panic attacks. Then, in 2017, she read an article by US neuroscientist Dr Eve Valera, a pioneer in the field, and she understood. Her ex-husband’s violence had damaged her brain. “I laugh about it now,” she says, “so I don’t cry.”
The connection between traumatic brain injury (TBI) and intimate partner violence (IPV) is a global scandal and a public health secret. In the UK, it is hard to find any reference to it on websites concerning violence against women and girls, women’s organisations, major brain injury charities, or in training for heath, police and social workers. Yet physically, mentally and emotionally it can affect thousands of women over their lifetime, long after the abuse has ended.
Precisely how many is unknown but in the UK now, for the first time, a longitudinal study is under way to try to establish the potential scale of the numbers of people affected and investigate the long-term brain health risks associated with exposure to IPV.
The Drake IPV study was established in 2021 and is due to publish its first two papers soon. It is headed by Glasgow University neuropathologist Prof William Stewart. The study focuses on women who are participating in Prevent Dementia, a UK-wide longitudinal study looking at risk factors for dementia in midlife.
“It’s remarkable that up to 30% of women may experience IPV over their lifetime, yet so little is understood,” says Stewart. “Even that statistic makes people sit up and say: ‘Hang on a second, that can’t be right.’ But it is. Sadly, studies and pathology of IPV-related TBI are vanishingly small.”
Scientific publisher James Drake initially established the Drake Foundation in 2014 to understand and improve the health and welfare of people in sports affected by head injuries. Research has since established that footballers have four to five times the risk of developing dementia than the general public. In 2021, 1.7 million women in England and Wales experienced domestic violence. How many are also at increased risk of dementia? “You’re doing my head in” may yet prove all too true.
The brain, floating in fluid, is highly fragile. Injury is caused by a hard blow or jolt that causes the head to move rapidly back and forth. Injury can also happen from lack of oxygen to the brain as a result of strangulation or suffocation. One extreme consequence of multiple concussions is chronic traumatic encephalopathy (CTE), which may mimic forms of dementia and the development of neurodegenerative diseases. CTE is only established after death by post-mortem. Doe, now in her 50s and happily remarried, has had to cut down her work and suffers from neural fatigue, anxiety, migraines and dizziness. “It’s damage that’s progressive and it’s going to last my lifetime,” she says.
“At Glasgow, we have the largest archive of brain tissue for research globally,” Stewart says, “25% to 30% female. Undoubtedly, we must have many cases of unrecognised IPV-related brain injury in our archive, but the stories remain hidden.”
Individuals who have become campaigners, like Doe, do have personal stories to tell. Paula Walters is another survivor. She founded Standing Courageous, a non-profit organisation, in Ohio in 2015. In 2006, her then boyfriend threatened her at gunpoint. He hit, kicked and strangled her. “I don’t know if I should kiss you or kill you,” he said. He was given probation and a fine. “I got a disability and a life sentence.”
Walters developed problems with balance. She became forgetful and irritable and found it difficult to concentrate. She was constantly tired and avoided bright lights and noisy areas. Medical bills left her in debt as one incorrect diagnosis followed another. A paramedic, she lost her job.
It took 13 years before Walters received a correct diagnosis – traumatic brain injury caused by IPV, revealed by an MRI scan. Since 2019 she has been getting her life back on track. “I didn’t realise how sick I was until I felt well,” she has said.
Now she speaks publicly about IPV-related TBI and trains professionals, including police. They may see a woman in a confused state and unable to get her story straight and assume she is lying or drunk. The signs of brain injury are rarely recognised. In 2019, the domestic abuse charity SafeLives conducted research for the Disabilities Trust. It revealed that 81% of practitioners supporting survivors of domestic abuse had no training in brain injuries and 62% felt unprepared to identify symptoms.
Survivors themselves may fail to realise the true cause of their lives falling apart – behaviour that may result in eviction from a refuge, a failure to navigate benefits, housing, employment and the loss of a child because of perceived “failings” as a mother. “Taking the children away and giving them to the abuser, what sense does that make?” asks Valera. In the 1990s she was studying neuropsychology while volunteering in a women’s shelter where users were reporting many post-concussive symptoms. Valera made the link. “I heard what the women were saying. Shockingly, my search for literature on this topic yielded zero results.”
Undaunted, and unable to acquire proper funding, Valera conducted her own research “on a shoestring”. She interviewed 99 women in a shelter: 75% reported at least one brain injury sustained from partners, half reported sometimes many more. Interviewees had major cognitive difficulties and suffered from high levels of anxiety and depression.
Thirty years later Valera points out that while there has been lavish funding and a plethora of concussion-related research into “punch drunk syndrome” in boxing and a range of other sports and the military, the connection between battered women and brain injury has only just begun to attract attention. Why the delay?
“We live in a patriarchal society and women are still second class,” Valera says. “We aren’t given the same appreciation in science. Males, including in animal research, are studied far more than females.” Valera also points out that while athletics makes money, dealing with the aftermath of male violence does not. “Money is key.”
The Enigma (Enhancing Neuro Imaging Genetics through Meta Analysis) consortium is an ambitious global attempt to study neuroimaging, cognitive, psychological and genetic data to uncover biomarkers and outcomes associated with different diseases and disorders. Set up in 2009, it now encompasses over 40 countries, 1,400 scientists, 200 institutions and 50 working sub-groups examining areas such as schizophrenia, autism, brain injury and the development of ageing. The group has already accessed over 50,000 participants.
Five years ago, the Enigma brain working team developed a sub-group to investigate IPV-related brain injury – except that, globally, very limited data on IPV-related violence exists. “At the time, I don’t think people in our field really understood how high is the prevalence of brain injury and head trauma in people with exposure to intimate partner violence,” says Dr Carrie Esopenko, head of the sub-group.
Not all brain injury is apparent when individuals are seeking support so, says Esopenko, it’s vital that the right questions are asked – by police, by health professionals, by researchers. She is also conducting a separate brain study of IPV. “We received a multimillion-dollar grant in 2021 but this is a marathon not a sprint.”
As research develops, questions to be answered include by how much IPV may increase a woman’s risk of dementia, as well as her fertility and health, later in life. It ought also to trigger a reappraisal in policing and the criminal justice system of a crime that can inflict more injury than initially is apparent. In 2019, the Canadian government gave $1m for research on IPV-related TBI to Soar (Supporting Survivors of Abuse and Brain Injury through Research) set up three years earlier in British Columbia by Karen Mason, head of a women’s shelter, and neuroscientist Dr Paul van Donkelaar.
Soar has three goals, “Explore, Educate, Empower”.
“When you think about injuries in sport, people choose to do it anyway,” Doe says. “But a victim of IPV is an unwilling participant.”
One woman who suffered at least three concussions at the hands of her ex-partner suggested to her doctor that the violence might be the cause of her migraines. She was told: “Let’s not go chasing zebras every time we hear hoofbeats.” By contrast, at Soar, survivors receive six months of part-time holistic rehabilitation services that include counselling, occupational therapy, aerobic exercise, meditation and help addressing health and practical problems, plus follow-up support.
“I have yet to meet a woman who doesn’t find it empowering just to know that TBI is part of their trauma versus not knowing,” Valera says.
The dots haven’t yet been fully joined up but awareness is growing. In 2019 the Disabilities Trust organised a roundtable of frontline professionals and called for “uniquely tailored support”. More recently, research revealed that four in five women prisoners in Scotland have a history of significant head injury, while the Brain Charity announced a free programme to support those who work with offenders with brain injury and other neurodiversities. Last week, the Institute for Addressing Strangulation (IFAS) opened and it, too, hopes to improve training and awareness of the risk of brain injury.
“What can we do if we do learn more?” says Professor Stewart. “If the answer is ‘nothing’, I wouldn’t be doing this work.”
* Name has been changed