This book will be of interest to readers who are concerned by the issue of decision-making in the context of dementia. The book aims to broaden discussion of the issue by moving beyond the current limited notions of cognitive incapacity or incompetence to explore the importance of personhood and the underlying complexities of decision-making for those who are living with dementia. In particular, the book asks readers to consider how the capacity to make decisions influences one's view of oneself, one's world and one's personhood, and to ask what the consequences are when this capacity alters and deteriorates. The book is a product of an international workshop hosted by the Centre for Research on Personhood in Dementia (CRPD) in Vancouver in May 2007. Drawing on a wide range of interdisciplinary and international perspectives, it addresses the relational interfaces between everyday, informal decision-making and more formal biomedical and legal processes for assessing competence. Thus the book may be of interest to students, researchers, specialist health and social care practitioners, legal professionals and others with an interest in personhood and dementia.
The editors' opening concise overview sets out some of the current tensions around the methods and consequences of formal decision-making that have arisen in cultures that emphasise individualism and (hyper) cognition. As the editors remark, although it is now accepted that there are serious limitations and consequences when capacity is tied up with cognitive functioning, there has been little focus on understanding decision-making by and for people with dementia in the context of personhood. This is particularly so with the innumerable decisions that are made in day-to-day living. The book has three sections: conceptual perspectives; practice and policy issues; and day-to-day decision-making. The first includes perspectives on personhood and decision-making not as a status but as a narrative process. This is followed by a chapter that articulates a sociological perspective on autonomy. The inclusion of Bourdieu's work on habitus and symbolic capital in this chapter sets the scene for an interesting although under-developed consideration of social violence and oppressive practices that further devalue people's social existence. The three remaining chapters in the first section take a broader look at modernity and the concept of the person, culturally diverse interpretations of personhood and autonomy, and a Confucian perspective on personhood. The last contributes in an understated way to Western cultural understandings of autonomy and to the relational dimensions of being a person, by proposing a matrix framework with vertical and horizontal dimensions and by illustrating its use in health care and its implications for the ethics of dementia care.
The chapters in the second section offer international perspectives on several legal and policy issues regarding decision-making, capacity and risk. They include a small amount of case study material, but the emphasis is more on policy than practice. Practitioners reading this section will have to work out the implications and priorities for practice for themselves as the chapter summaries do not do this well. In Section 3, the first chapter switches to the world as experienced by people with dementia, including how they attend to day-to-day decision-making after receiving a diagnosis of Alzheimer's disease, though without any contributions by people with dementia. The following chapter presents an in-depth case study of how one woman with dementia made decisions about using support services. The next explores family dynamics and communication, and how the person with dementia is enabled and disabled in decision-making. The final chapter is an important contribution to the book (and in my view in the wrong place): it considers how bodily movements and gestures are part of the evidence that others draw on when looking for signs that the person with dementia is communicating a choice or preference as a part of decision-making.
Recognising and valuing the way choices and preferences are communicated by people with advancing dementia and whose verbal communication is limited continue to be a major challenge for practitioners and policy makers. Other than the absence of the perspectives of people with dementia, the lack of diagrammatic representations of the various conceptual frameworks used throughout this book and the lack of summaries of the implications for practice, this collection provides a robust contribution to developing an understanding of decision-making in relation to people living with dementia.