Dementia As Social Experience

A diagnosis of dementia changes the ways people engage with each other – for those living with dementia, as well their families, caregivers, friends, health professionals, neighbours, shopkeepers and the community. Medical understandings, necessary as they are, provide no insights into how we may all live good lives with dementia. This innovative volume brings together an interdisciplinary group of researchers and practitioners to focus on dementia as lived experience. It foregrounds dementia’s social, moral, political and economic dimensions, investigating the challenges of reframing the dementia experience for all involved. Part I critiques the stigmas, the negativity, language and fears often associated with a dementia diagnosis, challenging debilitating representations and examining ways to tackle these. Part II examines proactive practices that can support better long-term outcomes for those living with dementia. Part III looks at the relational aspects of dementia care, acknowledging and going beyond the notion of person-centred care. Collectively, these contributions highlight the social and relational change required to enhance life for those with dementia and those who care for them. Engaging in a critical conversation around personhood and social value, this book examines the wider social contexts within which dementia care takes place. It calls for social change, and looks for inspiration to the growing movement for relational care and the caring society. Dementia as Social Experience is important reading for all those people who, in various ways, are living with dementia, as well as for those working in this area as clinicians, researcher and carers.

Losing Me, While Losing You is a long-needed resource to those providing care for people living with dementia — and for those providing care to the caregivers. In this book, caregivers speak from their own experiences of caring for loved ones with dementia; they cover when they first noticed behavioural changes, what they did and how their roles changed when they received the diagnosis, how the experiences changed their perceptions of themselves, especially in cases where important ones no longer recognized them or their, often long-standing, relationships. The caregivers also talked about what resources, if any, were available to support them through the caregiving journey and what recommendations they would make to government policymakers and to others in similar situations. This book is unique in that it documents the personal lived experience of loss which family, friends and caregivers go through as their roles, expectations and images of self are changed throughout the caregiving process.

As the largest generation in U.S. history - the population born in the two decades immediately following World War II - enters the age of risk for cognitive impairment, growing numbers of people will experience dementia (including Alzheimer's disease and related dementias). By one estimate, nearly 14 million people in the United States will be living with dementia by 2060. Like other hardships, the experience of living with dementia can bring unexpected moments of intimacy, growth, and compassion, but these diseases also affect people's capacity to work and carry out other activities and alter their relationships with loved ones, friends, and coworkers. Those who live with and care for individuals experiencing these diseases face challenges that include physical and emotional stress, difficult changes and losses in their relationships with life partners, loss of income, and interrupted connections to other activities and friends. From a societal perspective, these diseases place substantial demands on communities and on the institutions and government entities that support people living with dementia and their families, including the health care system, the providers of direct care, and others. Nevertheless, research in the social and behavioral sciences points to possibilities for preventing or slowing the development of dementia and for substantially reducing its social and economic impacts. At the request of the National Institute on Aging of the U.S. Department of Health and Human Services, Reducing the Impact of Dementia in America assesses the contributions of research in the social and behavioral sciences and identifies a research agenda for the coming decade. This report offers a blueprint for the next decade of behavioral and social science research to reduce the negative impact of dementia for America's diverse population. Reducing the Impact of Dementia in America calls for research that addresses the causes and solutions for disparities in both developing dementia and receiving adequate treatment and support. It calls for research that sets goals meaningful not just for scientists but for people living with dementia and those who support them as well. By 2030, an estimated 8.5 million Americans will have Alzheimer's disease and many more will have other forms of dementia. Through identifying priorities social and behavioral science research and recommending ways in which they can be pursued in a coordinated fashion, Reducing the Impact of Dementia in America will help produce research that improves the lives of all those affected by dementia.

This book presents the latest research that shows how design thinking, making, and acting contribute to the co-designing and development of products, spaces, and services with people living with dementia. We know that there is currently no cure for the 130+ kinds of dementia that millions of people live with all over the world, but the designed interventions such as the products, spaces, and services described in this book can address stigma, isolation, loss of confidence, and raise awareness and greater understanding of dementia. This book showcases a range of innovative and creative design interventions that have been developed to break the cycle of well-established opinions, strategies, mindsets, and ways of doing that tend to remain unchallenged in the health and social care of people living with dementia. The book will be of interest to scholars working in product design, service design, experience design, architecture, design research, information design, user-centred design, and design for health.

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.

Giving voice to the lived experiences of people with dementia across the globe, including Australia, Canada, Sweden and the UK, this critical and evidence-based collection engages with the realities of life for people living with dementia at home and within their neighbourhoods. This insightful text addresses the fundamental social aspects of environment, including place attachment, belonging and connectivity. The chapters reveal the potential and expose the challenges for practitioners and researchers as dementia care shifts to a neighbourhood setting. The unique ‘neighbourhood-centred’ perspective provides an innovative guide for policy and practice and calls for a new place-based culture of care and support in the neighbourhood.

A groundbreaking exploration of the sociology of dementia — with contributions from distinguished international scholars and practitioners. Organised around the four themes of personhood, care, social representations and social differentiation Provides a critical look at dementia and demonstrates how sociology and other disciplines can help us understand its social context as well as the challenges it poses Contributing authors explore the social terrain, responding in part, to Paul Higgs’ and Chris Gilleard’s highly influential work on ageing Breaks new ground in giving specific attention to the social and cultural dimensions of responses to dementia

What is dementia? How should we organize dementia care? This comprehensive book critically examines the main approaches to understanding dementia (bio-medical, social-psychological and socio-gerontological) and the main principles and ideologies of care. The book: • provides clarity on the gap between the utopian aspirations of care and the reality of care • opens up a series of questions about knowledge and treatment of dementia • argues for a transition from positions that place emphasis upon the individual or particular care services to the social, cultural and economic context Lively, informative and challenging, the book will be of interest to students of nursing, sociology of health & illness, social work and social gerontology. Anthea Innes teaches at the Dementia Services Development Centre, University of Stirling