More support is needed for families caring for former athletes living with neurodegenerative disease, a new study has revealed.
While the focus of much of the current research is the athletes themselves, this study sheds new light on the struggles of family members who had lived with a former athlete with chronic traumatic encephalopathy (CTE).
Researchers from the University of Winchester – in collaboration with Bournemouth University and Oxford Brookes University – interviewed partners and children who had experienced an athlete go through severe cognitive and behavioural decline before dying.
The aim of the study was to better understand the challenges they faced, as well as their emotional responses and coping strategies as they lived through these experiences.
In-depth interviews were carried out with relatives of deceased athletes, who had CTE linked to repetitive head impacts from playing sport.
The athletes were primarily players of American football, both amateur and professional, and were aged between 47 and 74 years of age when they died.
Researchers found:
- An athlete’s neurodegenerative decline had severe emotional consequences for family members, including the confusion of not understanding what was happening, a sense of hopelessness and frustration at witnessing such a change in people they love, as well as not knowing what to do to help and support their family member
- Other emotional responses included embarrassment and shame, especially when erratic behaviour took place in public, fear for themselves and others when behaviour became aggressive, and guilt prompted by feeling they had failed to effectively help and support the family member during their decline
- Limited coping strategies were employed by family members during the life of the athlete, with participants struggling to come to terms with the changes in their family member during this time
- The most prominent coping strategy came after the death of the family member, when people began to try to find answers concerning the illness, with understanding reducing confusion and bringing some relief
- Many of the family members have since become advocates for change in professional sport, to prioritise the health and safety of players over and above sport itself.
The research has been welcomed by England Rugby World Cup winner Steve Thompson, who has received a diagnosis of early-onset dementia aged only 42, and has probable CTE.
“When I was diagnosed with dementia and probable CTE I wasn’t just worried about me but I was worried about my family,” he says.
“This doesn’t just affect me, it has an impact on all of us. I’d say it has a bigger effect on my family than me. So to know people are working on and researching ways to make life easier for us and to know how to deal with things when they are bad is important.”
Dr Matt Smith, senior lecturer in sport and exercise psychology at the University of Winchester, says: “Our study aims to contribute to the under examined social aspect of brain injuries by providing a thorough examination of the experiences of family members of athletes with neurodegenerative disease.
“Neurodegenerative disease has far-reaching effects on those living with the condition and their partners, siblings and children, who are under immense strain, and this represents a growing health concern and societal problem.
“We hope that understanding the emotions and coping strategies employed by family members at different timepoints of the disease will allow the findings to be used to support other families who are at various stages of living with and caring for an athlete with neurodegenerative disease.”
Dr Adam J White, executive director of the Concussion Legacy Foundation UK and lecturer in sport and coaching sciences at Oxford Brookes University, adds: “The damage of repetitive head impacts on athlete’s brains has been pulled into the spotlight over recent years. But we have forgotten the impact that CTE has on the wives, children, brothers, and sisters who must witness first-hand the destructive nature of this condition.
“Their stories and experiences are also important, and they too are a group of people desperately in need of help, support, care, and answers. Through this research, we hope to shine a spotlight on this group and their needs.”
