This page features the books we have found most inspiring in our efforts to learn about the best ways of understanding what kind of a thing dementia is, and how we should respond to it.
Alzheimer's from the INSIDE OUT by Richard Taylor (2007) Health Professions Press
The author is an American psychologist who developed dementia nearly a decade ago. Since then he has worked tirelessly writing, blogging and speaking all over the States, and much of the rest of the world too, about what it is like to live with dementia.
Although the book is long, and tends to go over the same ground more than once, it is full of gems of wisdom, and is probably one of the most coherent and incisive and challenging books by a person with the condition.
Here is a short extract: Please sit down with each other and talk first about the territory. Nothing is to be gained, and much will be lost, if saying the words aloud so traumatizes those involved that they do not hear what follows the words 'Alzheimer's Disease'.
Dementia Beyond Drugs: Changing the Culture of Care G.Allen Power 2010 Health Professions Press
This is one of the most convincing pieces of polemic about paychosocial approaches that has appeared. First of all it is written by a medical doctor, so his overthrow of the panoply of arguments for antipsychotics carries special force. Secondly it is convincingly argued: in all its 242 pages Dr Power never takes his eye off the ball. Thirdly, it is grounded in real situations and people: it is packed with incidents and stories which lend authenticity to the advice offered; it also contains many quotations from people with dementia themselves, including telling selections from books by Richard Taylor and Christine Bryden. Fourthly, it is beautifully constructed and written: you always know where you are in a complex pattern of ideas and it is a pleasure to read.
This is a book which everyone concerned with dementia could profit from: it is a quite outstanding contribution to the literature. And for those in the care home sector it is a must-read.
Scar Tissue Michael Ignatieff (Vintage, 1994)
"[People with dementia] are on a voyage into deep space, sending back messages that it is our job to decipher." (p.140-1)
For us this is the original and best exploration of the nature of dementia. I (Kate) came across this book in Foyles in Charing Cross Road in the mid-90s - well before I was fully involved in work with people with dementia. I read it on the train back to Edinburgh and it helped me on my way.
(When I put that sticker on it, I thought it would come off easily...)
Intimate Death: How the dying teach us to live Marie de Hennezel (Little Brown 1997)
This is not actually a book in which dementia features at all, but as soon as we read it, over a decade ago now, we knew it would come to have a special significance for us. The author is a French psychologist working in a Paris hospice, and it is written in the form of a diary. Its short passages are full of shared intimacies with patients and reflections on her experiences. It is always absorbing and frequently moving. The generalisations when they come have been fully earned. Here is an extract:
To tell the story of one’s life before one dies. The telling of it is an act, and for anyone whose autonomy is so often diminished, this act takes on its full importance. There is a need to give shape to one’s life and to show this shape, which gives it its meaning, to someone else. Once the telling of it has been accomplished, the person seems able to let go, and to die.
No-one encountering people with dementia could fail to find this book life-enhancing.