Living with Dementia Reconsidered

List of figures, tables, boxes, and photographs
About the editors
About the contributors
The Reconsidering Dementia Series
Preface
Acknowledgements
Abbreviations

1 Reconsidering living with dementia: the IDEAL story 
Linda Clare

2 Dementia has many meanings: identity and diversity 
Linda Clare

3 How can you ‘live well’ with dementia? 
Catherine Charlwood

4 Being a carer 
Catherine Quinn

5 Feeling part of the world: social connections 
Claire Pentecost and Christina Victor

6 We’re in this together: relationships 
Catherine Quinn

7 Dementia in daily life: everyday activities 
Anthony Martyr, Catherine Charlwood and Linda Clare

8 Health matters: comfort and discomfort 
Serena Sabatini and Jeanette Thom

9 How you feel makes all the difference: psychological well-being 
Linda Clare and Sally Stapley

10 Is there anybody out there? Services and support 
Catherine Charlwood and Hayley Hogan

11 Meanings and methods: reflections from those involved in IDEAL 
Rachael Litherland and Catherine Charlwood

12 Call to action: a dementia manifesto 
Rachael Litherland, Catherine Charlwood and members of the ALWAYs group

Index

“An excellent resource… This is a book that makes a step-change in our knowledge and thinking on dementia and how living well with dementia might be defined.”
Professor Charles Musselwhite, Head of Psychology, Aberystwyth University, UK 

“This book is a beacon of hope and inspiration for practitioners, researchers, and policymakers alike.”
Professor Emma Wolverson, Professor of Ageing and Dementia, University of West London / Research Lead, Dementia UK

“This book teaches us about what it means to live well with dementia and also how it can be supported, truly inspiring.”
Professor Yun-Hee Jeon, Professor of Healthy Ageing, The University of Sydney, Australia

What does it mean to ‘live well’ with dementia? Why does this matter? And what could we do to help?

Drawing on a decade of rigorous research and with the direct input of people with dementia and their carers, this book unveils the findings from IDEAL (Improving the Experience of Dementia and Enhancing Active Life), the largest community-based dementia study in Great Britain, highlighting critical factors that significantly influence quality of life for both individuals with dementia and their carers.

Gain first-hand insights from those living with dementia and the research team, exploring how different aspects of our lives intertwine to influence feelings of contentment and inclusion, or distress and exclusion. Each chapter culminates in a robust, evidence-based statement, building towards a compelling manifesto that advocates for a paradigm shift in how we understand and support people living with dementia and their carers.

This book:

• Is uniquely co-produced with experts by experience
• Is centred around a ten-point manifesto which is call for action to improve the lives of people living with dementia
• Draws on the evidence of a ten-year research programme and over eighty scientific papers

Living with Dementia Reconsidered offers a holistic approach to reconsidering living with dementia from both evidence-based and experiential perspectives. This is a book for all those involved with dementia: students, practitioners, professionals, researchers, carers, family, friends, and people living with dementia.

The Reconsidering Dementia Series is an interdisciplinary series published by Open University Press that covers contemporary issues to challenge and engage readers in thinking deeply about the topic. The dementia fi eld has developed rapidly in its scope and practice over the past ten years and books in this series will unpack not only what this means for the student, academic and practitioner, but also for all those affected by dementia.

Series Editors: Dr Keith Oliver and Professor Dawn Brooker MBE.

Linda Clare is Professor of Clinical Psychology of Ageing and Dementia at the University of Exeter Medical School, UK and Director of the NIHR Policy Research Unit in Dementia and Neurodegeneration, University of Exeter, UK.

Catherine Charlwood is the Stakeholder Engagement and Impact Manager for the NIHR Policy Research Unit in Dementia and Neurodegeneration, University of Exeter, UK.

Catherine Quinn is Associate Professor at the Centre for Applied Dementia Studies at the University of Bradford, UK.

Christina Victor is Professor of Gerontology and Public Health in the College of Health, Medicine and Life Sciences and Associate PVC for Research Culture and Governance at Brunel University of London, UK.