In the preface to his latest book, Julian Hughes writes ‘how we think about dementia is crucial to how we react to it and, ultimately to what we do about it’ (p. 10). In the chapters that follow, Hughes systematically explores this premise, articulating clearly what we somehow knew all along, which is that dementia isn't just about a long-term neurological condition but about fundamental questions that concern us all: quality of life, human rights, what it is to be a person. This is a stimulating, and sometimes challenging, read which confidently moves away from many of the narrow medically orientated perspectives that dominated the literature for so long, inviting the reader to see the person living with dementia in their fullest context.
The book is arranged into five distinct sections and the chapters within these sections take the form of essays, many of which have been generated from conference papers; and the subject matter is broad and wide-ranging. The book moves from a wider discussion of ageing and personhood through to the issues of capacity and consent before considering the nature of palliative care, concluding with essays on the arts and the importance of the unknowable. Linking so broad and wide-ranging a subject matter is no mean feat, and if I had one minor criticism of the book, it would be how these chapters hang together as a whole. However, this minor criticism aside, there is so much to recommend this perceptive and thought-provoking text. Personal highlights include Hughes' discussion in Chapter Three of memory, where he explores not just the clinical aspects of memory loss but takes a broader look at what memory is and where memory is located. Equally stimulating is Chapter Eight, where he offers a fascinating exploration of capacity, juxtaposing the Mental Capacity Act and the Mental Health Act to look at the legal and philosophical questions that both Acts raise. Hughes' exceptional ability to ask complex questions, to ground the philosophical in the practical, is possibly best exemplified here.
His final chapters focusing on the arts are particularly insightful. In Chapter Fourteen, entitled ‘In Praise of Negative Capability’, he convincingly argues that our approach to dementia should be how we see the world. As he writes, ‘our approach to real people even with dementia who are in the world is not … fundamentally scientific, factual, reasoned; no, it is more a matter of intuition, of sharing knowledge that cannot be spoken, of appreciation’ (p. 220).
This is an inspiring book, bringing together and systematically exploring issues that do indeed challenge the reader to think and to question many taken-for-granted assumptions. To this end, it is a welcome addition to the broader literature about dementia and of value to students, practitioners, researchers and people who seek to move beyond the label of dementia to see the person.