How we think about Dementia

Personhood, Rights, Ethics, the Arts and What They Mean for Care

by Julian Hughes (Jessica Kingsley Publishers, London 2014)

Reviewed by Diane Stokes, Alzheimers NZ Board Member of Alzheimers NZ and Alzheimers Taranaki

This is an academic book about dementia and personhood that will probably appeal most to readers with some background in philosophy and ethics, or at least those not easily put off by quotes from Wittgenstein and Merleau-Ponty alongside Kitwood and Sabat. That said though, it is a well reasoned and thought-provoking read that may well change your thinking about what it is to be a person or, more precisely, what it is to be the same person over time – even in the face of severe dementia.

The authors basic premise is the concept of embodied selfhood – the idea that we are all situated embodied agents who exist in a context that encompasses our own life story, our family, our community and our culture; and that

‘at least some of our reactions reflect experience and values that have settled in our being, not consciously but in a pre-reflective manner so that our bodies react instinctively and yet with meaning’. 

If the embodied self is more than what is in ones head, then it follows that memory might also be more than just an inner process – something essentially shareable and public, and so able to be preserved by others.

To illustrate these concepts, Hughes devotes several chapters of the book to issues of capacity and incapacity, with particular reference to the Mental Competence Act for England and Wales, The MCA is not dissimilar to our own PPPR Act though, and the suggestion that the actual assessment is both more fundamental and more difficult than the ‘simplifying trickery’ that the Act portrays will resonate with anyone who is regularly asked to make such judgements.

Hughes goes on to address issues of dependency – life is, he suggests, a journey not usually made alone, and for most of us our autonomy is partly exercised by our dependency and not the reverse – and of care. He argues against ‘models’ of care that try to set down rules and guidelines, and for the importance of values – both when they are shared and when they conflict and require negotiation.

In the final section of the book, The Art and Practice of Memory and Forgetting, he draws on the idea of art 

‘as a way of seeing… that goes beyond the ordinary seeing of everyday life’

and suggests that our approach to dementia should be above all an aesthetic one – a matter of searching not for fact and reason, but for beauty and joy and human flourishing. That does not, says Hughes, mean that dementia is a matter of joy, or that the biological facts are irrelevant – just that they are not the whole deal.   

So, if this all sounds interesting and you want to delve deeper into Hughes arguments, read this book but, if not, for a much easier read that I think illustrates a lot of what Hughes is trying to say, I recommend Where Memories Go: Why dementia changes everything by Sally Magnusson (Two Roads 2013) – the story ofhow one remarkable family maintained their mother’s personhood as her dementia progressed.