C Foster, J Herring and I Doron (eds), The Law and Ethics of Dementia (Hart, Oxford 2014)
The Law and Ethics of Dementia is a very big book – in every sense of the word. It has sat on my bedside table for a few months, where I have eyed it guiltily – put off by its size and weighty subject matter. I wish I hadn’t. I picked it up one Sunday morning a few weeks ago, intending to read one or two articles, and found I could not put it down. The chapters I read (and I have, by now, read most of them) were well written, and the perfect length to convey an idea well and clearly. The chapters are accessible enough for somebody who is new to this field to read and understand, whilst still exploring cutting edge questions that will interest people who are familiar with these issues.
The editors are well regarded experts in the field of law and bioethics, and they have assembled chapters on a broad range of topics from an impressive range of authors. Of course, I read it with a particular interest in matters connected with legal capacity, and was not disappointed, but there are chapters on a huge range of other topics of interest. There are chapters on the demographics and genetics of dementia, its clinical management. The book explores issues that will be familiar for anybody who has worked with, or loved, somebody with dementia, including practical social issues like driving. There are chapters on resource allocation, research, new technologies, safegarding, sexuality and end of life care.
One of the most powerful and moving sections of the book is Part V – the perspectives of people with dementia* and carers. Disappointingly there is only one contribution from a person with dementia (Peter JS Ashley), I had hoped for more contributions like those the Trebus Project has gathered. Nevertheless, the chapters by carers were very moving, some very poignant, some very beautiful and some very sad indeed. It is as much a book about the lives of those who love somebody with dementia or care for them, as those with dementia.
Certain themes loop through different chapters in the book, themes that really resonated for me. Since I began my PhD in 2009, my three remaining grandparents developed dementia and died. I had previously worked with a few people with dementia, but seeing it this close up brought many of the issues facing people with dementia and their families into sharp relief. Among both my relatives and people I have worked with who had dementia, many had (most of the time) a very good quality of life, were very happy, and enjoyed meaningful relationships with others. I found Hugh Series’ chapter on The Happy Dementia Patient particularly interesting. He argues that a prevailing medical view that dementia leaves people as an empty shell has meant that there is a dearth of research on the experiences of people with dementia; ‘The shell becomes an object of care and study, but not a person to be consulted’. He cites Kitwood’s work on the social psychology of dementia, an approach which means that ‘the neurological impairment need not necessarily undermine the ability of a person with dementia to feel happiness or sadness or to communicate feelings with others’. I think I would prescribe this chapter, and Andrew McGee’s on personhood, to the philosophers and lawyers I sometimes meet who seem to view people with dementia as hollow shells, as non-persons, as inevitably better off dead.
One of the themes that crops up, in different forms, throughout the book is an ethics connected with reality and deception – most explicitly considered in Maartje Schermer’s chapter on The Ethics of Deception and White Lies, but also raised by Julian Hughes’ chapter on the use of new technologies that convince a person with dementia that they are having a conversation with a loved one (when in fact, they are listening to a recording of them). Reading these chapters, I remembered a woman I briefly worked with. She used to tell me what a wonderful life she led, how she enjoyed her home, her garden, the hedgehogs she used to feed, and looked forward to each day. She genuinely sounded happy, her carers loved her. Yet, she lived in extreme squalor – the hedgehogs turned out to be rats – no doubt she would have been diagnosed with Diogenes Syndrome. I don’t know what happened to her, but there were proposals to move her to a care home despite her vehement objections. I wondered then – I wonder now – about the ethics of puncturing her illusory world in this way.
People who have dementia continue to try to make sense, to derive meaning, from what is happening to them; just as we try to make sense of what is happening for them. My grandfather was a physicist. When I was a child, he had alarmed me by telling me that somewhere in the universe could be another Lucy Series made of anti-matter, and if we met then we would both explode (for months I was on the lookout for this other Lucy, my nemesis). On various visits to him as his dementia progressed, he applied his knowledge as a scientist to his experiences. Always fascinated by relativity theory, he became fixated with time and space. He would collect up other people’s watches and wear them up his arm – if you asked him what the time was he would pull up his sleeve, look puzzled and say “it’s very hard to tell”. One day, after we had clarified that I was his granddaughter – not his mother or his daughter – he told me, “I have worked out what is happening here, I am in an experiment – the first of its kind – where I am experiencing all the moments in my life at the same time”. The last time I saw him he led me by the hand and showed me a picture on the wall. It was a print of a painting of a tree lined road leading into the distance, that had hung in their house for years. “This”, he told me, pointing at the picture, “this is one of the greatest inventions man has ever created, it is a device that – if you do not want to be somewhere anymore – you put yourself on it and it takes you somewhere else”.
Personal meaning in the context of dementia is a theme that recurs, in various guises, throughout the book, particularly in chapters about precedent autonomy. Precedent autonomy raises questions about how our frames of meaning and our values endure (or not) with dementia, and how those around us should respond to them Andrew McGee’s chapter explores this from the perspective of a philosopher, but of course this is a question that has a bearing on legal capacity – how others support a person to make decisions or make decisions on their behalf.
I was gratified to see that several chapters in the book explore questions relating to the United Nations Convention on the Rights of Persons with Disabilities (CRPD). Mary Donnelly’s chapter gives a good overview of questions raised by the CRPD for legal approaches predicated on mental incapacity and best interests. A chapter by Windsor C Schmidt explores some of the concerns about substitute decision making which have led to the ‘paradigm shift’ in approach to legal capacity associated with Article 12 CRPD, and describes some of the supported decision making approaches found in Canada and the USA. Margaret Isabel Hall’s chapter gives a cogent critique of guardianship and decision making capacity, but goes on to argue that even supported decision making is ‘inadequate and inappropriate’ because it is still focused on decision making when in fact what we are concerned about is vulnerability. Nina A, Kohn explores issues relating to voting and dementia, and gives one of the best arguments I have ever read for why rights to vote should not be predicated upon ‘mental capacity’.
In short, this book is a real chocolate box of well written and interesting articles. Although most of the articles consider UK law, several chapters offer a more international perspective, and the ethical and medical chapters will be of interest to readers around the world. The chapters reflect very diverse views on a range of questions – this was especially true for the chapters on legal capacity. The book could be of interest for those with personal experiences of dementia, not merely philosophers and lawyers. As I was going through, I used up an entire packet of sticky index tabs to flag up passages that I wanted to return to. I suspect this is a book I will be re-reading and thinking about for years to come.
*The book actually refers to people with dementia as ‘patients’, which jars somewhat if you are not approaching this book with a medical mindset, but don’t let that put you off reading it.