Support needed for families caring for athletes living with neurodegenerative disease, says BU research

Following former Rugby World Cup winner Steve Thompson's diagnosis of early-onset dementia at 42, and probable chronic traumatic encephalopathy (CTE), a new research study explores the experiences of family members of former athletes with CTE.

While the focus of much existing research is on the athlete themselves, the study - a collaboration between Bournemouth University (BU), Oxford Brookes University and led by the University of Winchester - sought to tell the stories of family members who had lived with a former athlete with CTE.

BU’s Dr Keith Parry, Deputy Head of Department in Sport and Event Management, who was involved in the research, said: “In the UK, we are only starting to grasp the enormity of this public health crisis. With the growing number of cases of neurodegenerative diseases caused by playing sport that we are now seeing, it is vital that we understand the impact that it can have on athletes and their families.”

The study saw researchers interviewing partners and children who had experienced an athlete go through severe cognitive and behavioral decline before dying, to 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.

All participants attended the Legacy Family Huddle in Orlando, Florida in February 2020, an event organised by the Concussion Legacy Foundation that seeks to provide support to families as well as connect them with each other.

The researchers found that an athlete’s neurodegenerative decline had severe emotional consequences for family members, including the confusion of not understanding what was happening, 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.

The study found that limited coping strategies were employed by family members during the life of the athlete, with the most prominent coping strategy coming after the death of the family member, when people began to try to find answers concerning the illness. Many of the family members have since become advocates for change in professional sport.

Keith added: “It is time for sport and society to recognise this problem and to act so that more families do not go through such heart-breaking experiences.”

The study findings are presented as an ‘ethnodrama’ in the form of a play script produced using the direct quotes of participants. This allows vivid emotions and experiences to be strongly conveyed to a broad audience, including families currently experiencing similar challenges.

Athletes with Neurodegenerative Disease: A Phenomenological Exploration of Family Members’ Experiences is published in The Qualitative Report and is now available online.

The Concussion Legacy Foundation supports athletes, Veterans, and those affected by concussions and CTE and has a chapter in the UK. More information can be found at ConcussionFoundation.org.