1st Edition

Understanding the Grief and Loss Experiences of Carers Research, Practitioner and Personal Perspectives

Edited By Kerry Jones, Joanna Horne Copyright 2025
    170 Pages 1 B/W Illustrations
    by Routledge

    This book draws on recent research and cutting-edge ideas about bereavement and carers’ experiences across the life course to explore carers’ experience of loss and discuss their specific needs prior and or following the death of those they care for.

    Whether care provided is related to a long term or life limiting condition, many carers experience a multitude of losses including indefinite loss characterised by the loss of a taken-for-granted future, and an inability to plan for the future. Carers may also experience anticipatory grief as multiple losses such as companionship, personal freedom, and control manifest. While many carers are dedicated and committed to their role, they are subject to burnout and disenfranchised grief. When the role of caregiver ends as a result of the death of those cared for, this can represent a major change and a period of significant adjustment for carers leading to a range of emotions experienced.

    This book presents and discusses research findings, practitioner perspectives, and a wealth of personal accounts to illuminate this vital but neglected area and extend our understanding of loss for carers across the life course. This interdisciplinary and interprofessional volume brings together authors from a wide range of backgrounds, including carers themselves. It is an important contribution to the burgeoning literature around the role and experiences of carers and will interest academics, students and practitioners in health and social care, counselling, and psychology with an interest in loss and bereavement.

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    List of contributors


    Kerry Jones and Joanna Horne

    1: Ambiguous loss: Personal and professional reflections

    Andrea Perry

    2: Impact on identity for those working as healthcare professionals when taking on the role of carer

    Julie Messenger

    3: ‘I could cry all day, every day, about my losses’: Caring for young adults with life-shortening conditions – families’ experiences of disruption and loss

    Sarah Earle, Maddie Blackburn, Lizzie Chambers, Julia Downing, Kate Flemming, Jamie Hale, Hannah R. Marston, Lindsay O’Dell, Valerie Sinason and Sally Whitney

    4: From physically active to physically inactive: Understanding the experiences of a familial carer’s loss of self

    Nichola Kentzer, Martin Penson and Melinda Spencer

    5: Both sides of the coin: A mother’s experience of caring for an adult daughter living with serious life-limiting illness

    Susan Walker

    6: ‘God hasn’t given up on them’: Christian dementia carers’ narratives of experiencing and challenging ‘anticipatory grief’ and ‘social death’

    Jennifer Riley and John Swinton

    7: The grief of care partners of people living and dying with dementia: A psychodynamic perspective

    Phil McEvoy, Esther Ramsay-Jones, Amanda Barrell, Rachel Yates-Hoyles and Emma Smith

    8: When an adult with significant caregiving responsibilities for children is at end-of-life with cancer: A carer’s pre-bereavement and post-bereavement experiences

    Jeffrey R. Hanna, Cherith J. Semple and Lisa Strutt

    9: When caring ends: Exploring the hidden aspects of loss in trajectories out of caring in Australia

    Emma Kirby, Giselle Newton, Louisa Smith, Iva Strnadová, Brendan Churchill, Lukas Hoffstätter, Sarah Judd-Lam and Christy E. Newman

    10: Former carers: Grief, loss and other stories

    Mary Larkin and Alisoun Milne




    Joanna Horne is a Lecturer in Psychology and Counselling at The Open University, UK. She conducts research within the areas of physical activity and carer wellbeing, and support needs of young carers. Jo is a member of the Open University Carers Research Group.

    Kerry Jones is a Senior Lecturer at The Open University, UK, where her research and teaching focus on death, dying, grief, bereavement and end-of-life care. As Co-Lead of the Open University Carers Research Group, she has published and presented her research on care homes and care-giving staff during the pandemic, stillbirth neonatal death, parental bereavement, brain injury, dementia and suicide. Kerry was an academic consultant for A Time to Live on BBC 2.