1st Edition
A Critical History of Dementia Studies
This book offers the first ever critical history of dementia studies.
Focusing on the emergence of dementia studies as a discrete area of academic interest in the late 20th and early 21st centuries, it draws on critical theory to interrogate the very notion of dementia studies as an entity, shedding light on the affinities and contradictions that characterise the field. Drawing together a collection of internationally renowned experts in a variety of fields, including people with dementia, this volume includes perspectives from education, the arts, human rights and much more. This critical history sets out the shared intellectual space of ‘dementia studies’, from which non-medical dementia research can progress.
The book is intended for researchers, academics and students of dementia studies, social gerontology, disability, chronic illness, health and social care. It will also appeal to activists and practitioners engaged in social work and caregiving involved in dementia research.
List of illustrations
List of contributors
Acknowledgements
Introduction
ANDREA CAPSTICK AND JAMES RUPERT FLETCHER
PART I
Paradigms
1 Pathologisation, (bio)medicalisation and biopolitics
JAMES RUPERT FLETCHER
2 The century without a war: Kitwood’s concept of malignant social psychology and the need for historicization in dementia studies
ANDREA CAPSTICK
PART II
Discourses
3 Language about people with dementia
CLARE MASON, MICHAEL ANDREWS, RONALD FERGUSON (AKA RONALD AMANZE), JACQUI BINGHAM, ALLISON BATCHELOR, GERALD KING, TERESA DAVIES (AKA DORY), JULIE HAYDEN, AND WENDY MITCHELL
4 A semiotic analysis of meanings of dementia around the world
ANA KONCUL, ELIZABETH GEORGE ONYEDIKACHI, AND RUTH B ARTLETT
5 Literary dementia studies: From managing estrangement to imaginatively reconceptualising forgetfulness
HEIKE HARTUNG
PART III
Intersectionalities
6 Gender awareness and feminist approaches in dementia studies
ANN THERESE LOTHERINGTON
7 ‘On my good days, I can […] almost pass for a normal person’: Reading The film Still Alice using the conceptual lens of heteronormativity
KATHERINE LUDWIN
8 Race, ethnicity and culture: Problematic application in dementia and old age
MOÏSE ROCHE, MARIA ZUBAIR, AND JAMES RUPERT FLETCHER
PART IV
Methodologies
9 ‘Whose story is it and what is it for?’: Life story as critical discourse in dementia studies
JACKIE KINDELL, AAGJE SWINNEN, AND JOHN KEADY
10 From symptoms to citizenship: A critical reading of the perceived value of arts and culture in a dementia context
ROBYN DOWLEN AND REBECKA FLEETWOOD-SMITH
PART V
Politics
11 Human rights and dementia: A ‘socratic dialogue’
TOBY WILLIAMSON AND NICK JENKINS
12 Experts by experience: ‘I don’t want to be shaken, I want to be a shaker’
AGNES HOUSTON, NANCY MCADAM, JAMES MCKILLOP, AND MARTIN ROBERTSON FACILITATED BY PAULA BROWN
Conclusion: Multi-Disciplinary, multi-historied, multi-critical
JAMES RUPERT FLETCHER AND ANDREA CAPSTICK
Index
Biography
James Rupert Fletcher is a Wellcome fellow in the Department of Sociology at the University of Manchester, UK. His research covers several areas of the dementia economy, with an emphasis on using social theory and methods to understand dementia as a political entity. He has published on subjects including informal dementia care networks, mental capacity legislation and its influence on research governance, the anti-ageing technoscience market, anti-stigma and awareness raising campaigns regarding psychiatric disorder, the operationalisation of ethnicity and age in research, the biomarker discovery economy, the curation of dementia-friendly cultural events, dementia prevention public health strategies and environmental effects on cognition in urban settings. His lecturing spans medical sociology, the sociology of ageing, social research methods and ethical governance.
Andrea Capstick is an associate professor at the University of Bradford School of Dementia Studies. She originally worked alongside the late Professor Tom Kitwood to develop the first distance learning programme in dementia studies. Since then, she has at different times led both the BSc (Hons) and the MSc programmes in dementia studies at the University of Bradford. She holds a Doctorate in Education (EdD) for her work on the use of film and narrative biography in teaching dementia studies, and has published on a variety of subjects including participatory visual methods, arts-based approaches to teaching and learning, the representation of people with dementia in the popular media and dementia as a human rights issue. She has undertaken research funded by the NIHR (2012–15) on the impact of participatory filmmaking on social inclusion and well-being for people with dementia in long-term care, and more recently on the study ‘What works in dementia education and training?’ (2015–18) where she led the Patient and Public Involvement (PPI) work.
