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Project

Caring for Former Athletes who live with Neurodegeneration

Research theme: Sport, Health and Performance Enhancement Research Centre (SHAPE)

School: School of Science and Technology

Overview

As the links between sport, brain injuries and various neurodegeneration continue to be established, there is an increasing focus on the lives of those living with the consequences of their sporting careers. NTU’s team of scholars working in this area seeks to explore the lives of those people and their families as a means of further our understanding of how they might be supported. This work builds on existing work being conducting at NTU within the SHAPE research centre. It draws together colleagues from across the institution, to work with academics at The University of Nottingham, Loughborough University, Sheffield University and Manchester Metropolitan University, community partners including Dementia UK, Forget Me Notts, Trent Dementia, and members of the public whose lives have been affected by a career in sport.

This work is supported by funding from the Foundation for the Sociology of Health and Illness and NTU's Health and Wellbeing Strategic Research Theme. These funds help the team tell the unique stories of former sportspersons, their families and carers. The research team focus on being able to understand how to align patient and family carer needs, with care provision and various services. This initial stage of the project has four aims:

  • Illustrate the wide range of emotions and experiences of those living with dementia their families and carers.
  • Explore the ways that roles within the family may shift as changes in health and physical/cognitive abilities occur.
  • Highlight the lives of former athletes who live with the physical and mental consequences of their sporting careers.
  • Ensure the study is co-produced from the outset by working in collaboration with people affected by neurodegeneration and other stakeholders

After this work is completed the project team will organise a knowledge sharing events. These will engage with patients, carers, local communities, and academics. This initial stage of the project will form the foundation from which a larger scale project will be proposed to research councils.

If you would like to be involved in some form or have any questions or comments, please do contact the project lead Dr Christopher R. Matthews – Christopher.matthews@ntu.ac.uk

Exploring the lived experience of former athletes and their families affected by neurodegeneration

The ‘concussion crisis’ has been described as "the most important sports story of the 21st century" (Hobson, 2020). As a response to this, the project PI Christopher Matthews and colleagues organised a symposium funded by NTU titled Concussion in sport - what do we know, and what’s next? It was clear from this event that the crisis is a biomedical issue, as co-applicant Hunter, and steering group members Tom Dening and Angus Hunter Varley, highlighted a body of research that suggests traumatic brain injuries are linked to both acute and chronic health problems, most notably a form of dementia known as Chronic Traumatic Encephalopathy (CTE). However, the crisis is also social, being marked by government inquiries, attempts at litigation, and media coverage.

Despite the importance of understanding the social nature of the concussion crisis, there is little work on the realities of experiencing and living with the consequences of CTE and, as Dominic Malcolm (2020) argues, sociology has much to offer in developing such knowledge. Recent ethnographic work from Matthews (2019) and AlHashmi and Matthews (2021) provide such contributions by exploring the lived experiences of those who have suffered sports-related concussions and brain injuries.

This project seeks to extend this work by drawing on contributions from steering group members in the sociology of medicine, health and illness, in particular, Alison Pilnick’s (O’Brian, et al., 2021; Pilnick et al., 2021; 2021; Slocombe, et al., 2022) work using qualitative methods to explore the lives of people living with dementia, and Greg Hollin’s (2021, 2020) recent project studying dementia in sport, to document and theorise the realities of caring for former athletes living with neurodegeration.

Our Team

Christopher Matthews

Senior Lecturer

School of Science & Technology

Ian Varley

Associate Professor

School of Science & Technology

Prof Angus Hunter

Professor and Head of Department

Sport Science

Dr Diane Wren

Research and Partnership Development Manager (SHAPE)

Research Development

Jack Hardwicke

Senior Lecturer

School of Science & Technology

Dr. Jane Rowley

Research Fellow

School of Science & Technology

Max Kandhola

Associate Professor

D&DA Design & Digital Arts

Steering group

Prof. Alison Pilnick – Professor of Language, Health and Society, Manchester Metropolitan University

Dr. Greg Hollins – Welcome Trust Research Fellow, University of Sheffield.

Dr. Jane Rowley, Trent Dementia

Prof. Dominic Malcolm – Professor of Sociology of Sport, Loughborough University.

D.r Karen Harrison-Dening – Dementia UK

Penny Watson, brain injuries activist and campaigner

Dr. Nigel Plant, Forget Me Notts

Dr. Neil Chadborn, Senior Research Fellow, University of Nottingham

Dr. Reem AlHashmi, Brain Injuries Researcher

Prof Tom Dening, Head of the Centre for Dementia in the Institute of Mental Health at Nottingham

Publications

Related projects

The fog soon clears: Brain injuries in boxing

The paper explores how boxers' personal understandings of brain injuries are shaped by their bodily experiences and risky beliefs about the body, shedding light on how such knowledge excludes and diminishes outsider perspectives, including medical insights, within the sport.

Author: Christopher R Matthews - Nottingham Trent University

Read the full paper