Dementia as Social Experience

This innovative volume draws on a range of interdisciplinary perspectives and the voices of people living with dementia to foreground the social dimensions of the dementia experience. The first part critiques the stigmas, the language and fears often associated with a diagnosis of dementia, with the intent of improving quality of care. The second part focuses on the social changes required to live a good life with dementia, discussing issues such as advanced care planning, decision-making and person-centred care. Engaging in a critical conversation around personhood and social value, this book is an vital read for all those practising, studying or researching dementia, wellbeing and health.

Gaynor Macdonald is a Social Anthropologist at the University of Sydney, Australia. Jane Mears is Associate Professor of Social Policy at Western Sydney University, Australia.

Chapter 1. Reframing Dementia. The Social Imperative Part I. Challenging Social Constructions of Ageing and Dementia Chapter 2. Negative Positioning of 'Dementia' in an Environment of Competition for Resources Chapter 3. 'Nobody Cares About Me'. Older Women, Caring and Dementia Chapter 4. Feeling Invisible and Ignored. Families' Experiences of Marginalisation Living with Younger Onset Dementia Chapter 5. Generational Perceptions of Dementia in the Public Sphere. Public Health, Age-Othering and Generational Intelligence Part II. Autonomy and Dignity Chapter 6. Developing a Relational Approach to Decision-Making in Health Care Settings Chapter 7. 'We've Always Thought of One Another'. Relational Perspectives on Autonomy and Decision-Making Among People with Dementia and Their Family-Carers Chapter 8 Planning for the Rest-of-Life, Not End-of-Life. Reframing Advance Care Planning (ACP) for People with Dementia Part III. Persons in Relationship. The Dynamics of Care Chapter 9. The Critical Importance of Adopting a 'Personhood Lens' in Reframing Support and Care for Those with Dementia Chapter 10. Emotional Labour, Person-Centred Care and Problem Solving in Regulating Dementia Care Chapter 11. Why 'Person-Centred' Care is Not Enough. A Relational Approach to Dementia