Speaking our minds – Personal Reflections from Individuals with Alzheimer's By Lisa Snyder. New York: W. H. Freeman & Co. 1999. 157 pp. £15.95 (hb) ISBN: 0-7167-324-6

Although much has been written about the clinical and scientific aspects of Alzheimer's disease, one side of the story remains largely untold — the subjective experience of those who have the illness. This book addresses this important issue. The author, a clinical social worker from the Alzheimer's disease Research Centre at the University of California, has recorded a series of interviews with individuals affected by Alzheimer's disease. Seven people eloquently relate their personal journey through the illness, covering issues such as their early symptoms, how they were told their diagnosis, how they have adapted their lives to cope with their limitations, what effect it has had on their families and what their hopes and fears are for their futures. The narrative is part poignant, part instructive, part humorous, but always compelling — I found I had to stay up one night to finish it.

The author charts the progression of illness in follow-up interviews, and it is clear she views the individuals not just as research subjects with a common illness, but a people with a wealth of life time experience. Numerous metaphors are used throughout the book that both illustrate the points made and lighten a difficult subject matter.

Though it does not claim to be a text-book, dotted through the narrative are facts and figures about the illness. There is a section detailing recent developments in the recognition and treatment of the illness and an overview of current research. It also highlights some clinical, ethical and legal problems and includes an interesting discussion on how and when patients were told their diagnosis and the effect this had on them.

In the current climate of evidence-based medicine, it is essential not to forget the importance of individual experience. Hearing the voice of people with Alzheimer's disease deepens our understanding of the effects of the illness and helps inform our clinical practice. If you are affected by Alzheimer's professionally or personally, read this book: I think you will find it is well worth a sleepless night.