The main purpose of this very important new publication is to help us to understand the contribution of a values-based approach to dementia, as well as to explore how the challenge that dementia poses can enhance value-based practice (p. xiv). Also it is called a Manifesto because its aim is to make changes, both in practice and in attitudes. The central message of the Manifesto is that ‘our views about dementia reflect our views about humanity; and that people with dementia have rights’ (p. 32). To ground the Manifesto in the real world, the book ranges across crucial and interlinked themes such as relationships, multi-disciplinary working, science, communication and decision-making.
The book is elegantly written with a persuasive, but never didactic, approach. Between them the authors have an enviable grasp of politics, philosophy, policy, science, human rights, practice, law and the social history of disability, and they deploy this to great effect, making frequent connections between different worlds and paradigms which are always fruitful and thought-provoking – and occasionally very challenging. I am thinking particularly of the chapter about the ‘Squeaky Wheel Principle’ (Chapter 10) which looks at areas ‘where conflicting values cause noise, often because there is not enough evidence to oil disputes and disagreements’ (p. 144).
In my view, the book achieves its mission supremely well. I lost count of the number of times that I wanted to punch the air and shout ‘Yes!’ I love the assertion that ‘dementia is a unique touchstone for understanding the human condition’ (p. 33) – and I am confident that this will resonate with anyone who has experience of dementia, in whatever capacity.
In terms of any limitations, I would have liked to see more direct quotes from people with dementia themselves (although it is true that their lived-experience accounts are well referenced). There are now many sources for these, including quite a wide range of personal blogs and vlogs, and also the Dementia Diaries, a web-based resource of over 2,000 audio reports (though I must declare an interest, as my own organisation facilitates this project). Quotations from these ‘real and raw’ voices of people with dementia would have brought an even stronger human touch to many of the points made in the book.
I suppose one also has to think about the audiences. There is always the danger that this kind of book will only be given full attention by the ‘converted’. It does have the potential to be of huge importance in the world of policy, and also dementia research, and will be of particular interest to students who have not yet become entrenched in a particular way of looking at dementia. But sadly I suspect that few front-line practitioners, or indeed people affected by dementia, will have the time or capacity to read it, except perhaps in summary form. So I'm hoping very much that an accessible version is planned – and that the book's publication will be followed by numerous shorter single-issue papers and articles directed at specific audiences – including family carers, people living with dementia, health and care staff, and the general public.
Whether this unique book will reach and ultimately influence those who can really make the profound culture changes that are needed is of course a moot question, and remains to be seen. It deserves to influence government policy, care practice, research and social attitudes – and the impact could be profound.
I really hope it does.
