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Brain injury

‘Support the families of athletes with neurodegenerative disease’

New research lays bare the reality of the challenges families face as their loved one goes through cognitive decline

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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.”

Brain injury

Expert panel to assess future of brain injury rehab

The webinar on Wednesday will examine the challenges and opportunities in neurorehab now and into the future

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Experts from across the world of brain injury rehab are coming together to assess the future of the sector at an event this week. 

The webinar – What does the future of brain injury rehabilitation look like? – brings together leaders in their field of assess what challenges and opportunities lie ahead. 

Scores of people have already signed up for the hour-long live online event, on Wednesday at 4.30pm, with places still available and questions can be submitted in advance. 

The expert panel comprises:

The event marks the second webinar held by NRC Medical Experts, in association with NR Times, following a successful debate about the Rehabilitation Prescription earlier in the year. 

The upcoming webinar will focus on brain injury rehab, and the advances made in innovation to better meet the needs of people living with life-changing injuries. 

Through changes in technology, developments in medicine and the advances in neurorehabilitation, brain injury patients should face an outlook which is better than ever before. 

However, the lack of resource within health services, exacerbated by the ongoing impact of COVID-19 and mounting pressures on the NHS, mean that progress and change is not being seen at the rate many would hope for. 

“We are very much looking forward to addressing the very pertinent topic of brain injury rehabilitation with our stellar panel, all of whom have a vital role to play in supporting people living with brain injuries and their families,” says Deborah Johnson, editor of NR Times. 

“Innovation and technology is a hugely exciting area, but the impact of COVID on already stretched resources is of great concern. 

“Our webinar will look at the challenges and opportunities that lie ahead, and what more can be done to improve the lives of patients and their families.”

To attend the webinar, registration is required in advance. To sign up, visit here 

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Brain injury

ABI strategy confirmed by Government

Huge breakthrough in support for people with brain injuries comes after Chris Bryant MP introduced the ABI Bill

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The Government has today committed to producing a strategy to deliver better support to people living with acquired brain injury (ABI), following efforts from MP Chris Bryant and an array of charities and leading figures to force them into action. 

In a statement, it was confirmed a strategy will be drafted with a call for evidence being launched early in the new year to help shape its development. 

Gillian Keegan MP, Minister for Care and Mental Health, said the development of the strategy would be co-chaired by herself and Mr Bryant, with senior officials in all relevant Government departments invited to join the board. 

“Following publication, the strategy will be kept under review and may be revised periodically to ensure that it continues to reflect the priority areas and actions needed to best support people living with ABI and their families,” the statement said. 

The move by the Government marks a huge step forward in ABI provision, following years of campaigning from charities and survivors for more support. Mr Bryant recently introduced a Private Members Bill with the aim of forcing the creation of such a strategy, which was due to have its second reading in Parliament tomorrow. 

Mr Bryant – chair of the All Party Parliamentary Group (APPG) on ABI and a tireless campaigner for the cause – had called on the Government to take action to ensure a more joined up approach from Government departments in supporting individuals and families affected by brain injury. 

Last month, he delivered a letter signed by over 200 MPs, charities, brain injury survivors and other providers to 10 Downing Street, calling on the Prime Minister to take action. Following that, Boris Johnson confirmed in Parliament that the Department for Health and Social Care would be looking at the development of such a strategy. 

It has also been supported widely by the public and via social media.

But today’s confirmation is a huge step forward and will ensure the development of an appropriate strategy, with input from families and professionals across the world of ABI. 

Announcing the development on Twitter, Mr Bryant said: “ The Government has just announced it will draft a strategy on Acquired Brain Injury, set up an ABI programme board which will be co-chaired by Gillian Keegan and me, and will call for evidence very soon. 

“So my ABI Bill won’t be needed. Many thanks to all who’ve helped!”

Charities who have been vocal in their support of Mr Bryant’s Bill were keen to celebrate the move, which comes after years of campaigning. 

UKABIF hailed the announcement as “a gift” and the Disabilities Trust said it was “just amazing”. 

The Child Brain Injury Trust added: “Fantastic news to hear. A strategy for ABI has been needed for so long. We are thrilled!”

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Brain injury

UEFA concussion charter urges protection and education

The importance of educating players, coaches, referees, doctors and the public about dangers of concussion in football is highlighted

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A European-wide football concussion charter has been launched, stepping up efforts to safeguard players and urging the education of those involved in the game around the dangers of impacts to the head. 

UEFA has launched its concussion charter, which will apply to all teams taking part in men’s and women’s club and national team competitions across Europe. 

The charter aims to reinforce the importance of good practice in concussion management and highlights the concussion procedures that should be followed. 

It also promotes the education of players, coaches and staff about the concussion procedures in force at UEFA games. Team doctors are being asked to organise specific education sessions to brief players, coaches and staff about the concussion procedure to be followed at UEFA matches.

Furthermore, its 55 member associations are ‘strongly encouraged’ to deploy where possible, a medical video review system at their stadiums to enable immediate and informed injury assessments.

UEFA will facilitate the installation of the system with the host broadcaster. Home teams using a medical review system should offer the visiting team the same system.

Club and national teams are being urged to sign the charter to underline their commitment to safeguarding the health of their players.

In doing so, the signatories pledge their full support for UEFA’s guidance on how to recognise and manage a head injury from the time of injury through to the safe return to football.

“Everyone should know how to react and what to do,” said Tim Meyer, UEFA Medical Committee chairman. 

“Concussion is undoubtedly a serious injury which needs to be managed and treated properly. 

“The health and safety of any players taking part in Europe’s club and national team competitions is of paramount importance not only to UEFA, but also to national associations across the continent.

“Although research studies report a low incidence in football, everyone should know how to react and what to do in the event of a concussion on the pitch.

“By signing this charter, clubs and national teams will demonstrate their support for UEFA’s concussion awareness activities – and take a considerable step forward in helping to protect their players.”

The measure is the latest stage in efforts to safeguard players, following steps including UEFA’s implementation of a keynote concussion awareness campaign in 2019 and the Premier League becoming the first competitive league in the world to introduce concussion substitutes. 

UEFA’s head injury procedure is:

• In the event of a suspected concussion, the referee will stop the game to allow the injured player to be assessed by the team doctor. Players should remain calm during the situation and not interfere with the assessment.

• The assessment should in principle not take more than three minutes, unless a serious incident requires the player to be treated on the field of play or immobilised on the field for immediate transfer to hospital.

• If the assessment cannot be made after the three minutes and/or a suspicion for a concussion arises, the player should not be allowed to continue playing.

• A player suffering a head injury that requires assessment for a potential concussion will only be allowed to continue playing after the assessment, on specific confirmation by the team doctor to the referee of the players fitness to do so.

The decision remains entirely with the team doctor. Coaches, referees and players are not allowed to interfere in the assessment and decision of the doctor.

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