Broadening The Dementia Debate

Dementia has been widely debated from the perspectives of biomedicine and social psychology. This book broadens the debate to consider the experiences of men and women with dementia from a sociopolitical perspective. It brings to the fore the concept of social citizenship, exploring what it means within the context of dementia and using it to re-examine the issue of rights, status(es), and participation. Most importantly, the book offers fresh and practical insights into how a citizenship framework can be applied in practice. It will be of interest to health and social care professionals, policy makers, academics and researchers and people with dementia and family carers may find it revitalising.

This book puts the critical into dementia studies. It makes a timely and novel contribution to the field, offering a thought-provoking critique of current thinking and debate on dementia. Collectively the contributions gathered together in this text make a powerful case for a more politically engaged and critical treatment of dementia and the systems and structures that currently govern and frame it. The book is inter-disciplinary and draws together leading dementia scholars alongside dementia activists from around the world. It frames dementia as first and foremost a political category. The book advances both theoretical and methodological thinking in the field as well as sharing learning from empirical research. Outlining the limits to existing efforts to frame and theorise the condition, it proposes a new critical movement for the field of dementia studies and practice. The book will be of direct interest to researchers and scholars in the field of dementia studies and wider fields of health, disability and care. It will provide a novel resource for students and practitioners in the fields of dementia, health care and social care. The book also has implications for dementia policymaking, commissioning and community development. The Open Access version of this book, available at http://www.taylorfrancis.com, has been made available under a Creative Commons Attribution-Non Commercial-No Derivatives 4.0 license.

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.

Focusing mainly on case studies from Australia and the United States of America, this book considers how people with dementia represent themselves and are represented in ‘theatre of the real’ productions and care home interventions, assessing the extent to which the ‘right kind’ of dementia story is being affirmed or challenged. It argues that this type of story — one of tragedy, loss of personhood, biomedical deficit, and socio-economic ‘crisis — produces dementia and the people living with it, as much as biology does. It proposes two novel ideas. One is that the ‘gaze’ of theatre and performance offers a reframing of some of the behaviours and actions of people with dementia, through which deficit views can be changed to ones of possibility. The other is that, conversely, dementia offers productive perspectives on ’theatre of the real’. Scanning contemporary critical studies about and practices of ‘theatre of the real’ performances and applied theatre interventions, the book probes what it means when certain ‘theatre of the real’ practices (specifically verbatim and autobiographical) interact with storytellers considered, culturally, to be ‘unreliable narrators’. It also explores whether autobiographical theatre is useful in reinforcing a sense of ‘self’ for those deemed no longer to have one. With a focus on the relationship between stories and selves, the book investigates how selves might be rethought so that they are not contingent on the production of lucid self-narratives, consistent language, and truthful memories.

Traditionally, dementia has been defined primarily in terms of loss: loss of cognitive and communicative competencies, loss of identity, loss of personal relationships. People living with dementia have been portrayed as increasingly dependent on others, with their loved ones seen more as care givers than as spouses, children and relatives. However, in the last two decades this view of the person living with dementia as an 'empty vessel' has been increasingly challenged, and the focus has shifted from one of care to one of helping people to live with dementia. With contributions from an international range of expert authors, Living with Dementia strongly advocates this new perspective through in-depth discussion of what people with dementia and their loved ones can do, and how they can actively make use of remaining resources. Topics covered include: - How to involve people with dementia in collaborative activities in the home, and the benefits this has on their cognitive and communicative abilities. - Ways in which identity can be presented and preserved through storytelling, and the impact on identity of moving from home into residential care. - The benefits of a 'citizenship' approach to dementia: of recognising that a person living with dementia is an active agent, with the right to self-determination and the ability to exert power over their own lives. This important new contribution to the dementia debate is truly enlightening reading for students across the full range of health and social care disciplines, and offers a fresh perspective to existing practitioners and those who care for people with dementia.

This book explores how dementia studies relates to dementia’s growing public profile and corresponding research economy. The book argues that a neuropsychiatric biopolitics of dementia positions dementia as a syndrome of cognitive decline, caused by discrete brain diseases, distinct from ageing, widely misunderstood by the public, that will one day be overcome through technoscience. This biopolitics generates dementia’s public profile and is implicated in several problems, including the failure of drug discovery, the spread of stigma, the perpetuation of social inequalities and the lack of support that is available to people affected by dementia. Through a failure to critically engage with neuropsychiatric biopolitics, much dementia studies is complicit in these problems. Drawing on insights from critical psychiatry and critical gerontology, this book explores these problems and the relations between them, revealing how they are facilitated by neuro-agnostic dementia studies work that lacks robust biopolitical critiques and sociopolitical alternatives. In response, the book makes the case for a more biopolitically engaged "neurocritical" dementia studies and shows how such a tradition might be realised through the promotion of a promissory sociopolitics of dementia.

Many new pieces of technology can be beneficial to individuals living with dementia, including both hardware and software. This straightforward guide summarises the current research on this growing topic, and gives practical advice on how available technology can be used to improve the everyday lives of people with dementia. Looking at a range of available products, such as off-the-shelf computers and smartphones, to dementia specific applications and programs, it also addresses some common obstacles and barriers faced when introducing technology in dementia care. The past twenty years have seen an array of technologies developed to improve the day-to-day lives of people with dementia; this guide shows how they can be effectively used.

The time has come to further challenge biomedical and clinical thinking about dementia, which has for so long underpinned policy and practice. Framing dementia as a disability, this book takes a rights-based approach to expand the debate. Applying a social constructionist lens, it builds on earlier critical perspectives by bringing together concepts including disability, social inclusion, personhood, equality, participation, dignity, empowerment, autonomy and solidarity. Launching the debate into new and exciting territory, the book argues that people living with dementia come within the UN Convention on the Rights of Persons with Disabilities and therefore have full entitlement to all the rights the Convention enshrines. A human rights-based approach has not to date been fully applied to interrogate the lived experience and policy response to dementia. With the fresh analytical tools provided in this book, policy makers and practitioners will will gain new insights into how this broader perspective can be used to further promote the quality of life and quality of care for all those affected by dementia.