When reviewing Alzheimer's from the Inside Out (Taylor, 2007) for this journal (Guha, Reference Guha2008) I noted that, although there has been a recent spate of autobiographical writings by people affected by various disorders of the mind, Alzheimer's forms an exception; quite understandably so. Few people with dementia are able to write a coherent publishable account of what they are going through, at sufficient length to fill a book. There are quite a number of internet chat rooms for Alzheimer's patients however. The format somehow seems more suitable than a book, where entries can be short for people with short attention spans. Informality is more acceptable online than in print. Response times can be very quick for impatient users, but do not have to be instantaneous, so users who stumble over words can keep plugging away until they have achieved something postable. I would note the chat-room of the Dementia Advocacy and Support Network – http://www.dasninternational.org – as an excellent example of these resources.

What you tend to get instead of books by patients are books by carers and support workers, designed to show how patients cope with their lives, containing edited extracts of reported conversations. There are hundreds of these, mostly produced by small local presses, plus a few large-scale publishers like Jessica Kingsley. Some are general accounts trying to make sense of a single patient's deterioration. (I must admit that it was reading through a lot of these that put off myself and my sister from adding to their number with an account of our own mother's last years.) But some, like this one, contain extracts from conversations with a range of people. Some focus on particular activities that have been used to retain the interest of patients, ranging from religion (see Trickett Reference Trickett2006, as one example among many), to flower arranging (London, Reference London2007), dancing (Bryden, Reference Bryden2005), and above all to music (see for example Aldridge, Reference Aldridge2000 or Zeisel, Reference Zeisel2009). There is evidence to suggest that music is one of the last faculties to go in Alzheimer's disease. I hope to maintain my own determined atheism as my faculties fade, but if I am left at the bitter end with nothing but fragments of the hymns we sang in primary school assembly, I hope I will find some kindly carers to sing them with me.

When it was originally published, ten years ago, Speaking Our Minds was part of a strong reaction to the over-medicalization of Alzheimer's, emphasizing the fact that “a person with Alzheimer's” is still a person, with something to give and to share, rather than just a patient to be treated. It consisted of heavily edited interviews with seven people, interspersed with comments under the general headings of “Listening”, “Speaking” and “Responding.” The author is a social worker based at the University of California, who edits an excellent newsletter Perspectives (email: lsnyder@ucsd.edu for details) and maintains a website (http://adrc.ucsd.edu/news.html) for individuals with Alzheimer's. For this revised edition of Speaking Our Minds, the interviews have remained unchanged. No information is given as to what happened to the respondents subsequently (given their ages and condition I suspect the worst). Some alterations have been made in the author's comments, reflecting such progress as has been made over the past decade in awareness and advocacy, and perhaps in greater sensitivity to the need for dignified and life-affirming care. I am not sure that the differences are great enough to warrant someone who has the first edition upgrading to this one, but newcomers to the field may be interested.

My main criticism of this book, unchanged since the first edition, is of the very heavy editing of the interviews. All the stammers and stutters, the rages over lost words, the groping for phrases that are obvious to the listener, and all the rambling repetitions are omitted. This does indeed make people with Alzheimer's seem more like people rather than cases, but gives a totally misleading impression of how easy it is to communicate with them. A novice advocate taking this book as a guide would be in for a nasty shock when faced with a real client. There are useful insights into ways of identifying and empathizing with people with Alzheimer's interspersed in the comments, but the narrations should be treated with caution. The cover notes say “Speaking Our Minds will transform the way you look at Alzheimer's and how you interact with those that have it.” I am not sure that “transform” is the right word, but it might encourage health workers to treat cases as people, and so is worth considering.