I am gathering together a small collection of books all published by Jessica Kingsley who is certainly one of the most innovative and ground-breaking publishers working in this field.
Their list covering a range of books on dementia is well worth examining.
These first two books handle at first hand the experience of living with dementia.
People with Dementia Speak Out
Lucy Whitman 2015 JKP 304 pages £14.99
Whatever the hell happened to my brain? Living beyond dementia
Kate Swaffer 2016 JKP 391 pages £13.99
Whitman has gathered together 23 people from diverse backgrounds and in a well-organised book there is a deeply moving range of accounts of experiences of living with dementia. There is honesty and a searing articulation of frustration and fear. The cumulative effect of the devastating impact of memory loss on people’s lives is both moving and disturbing. The individual accounts of how identity is broken down and reframed service as a reminder of the life changing effects of dementia on people and their families.
My only regret about this text is that it probably will not receive as wide a readership as it might. We need surely to embrace this devastating condition as belonging to the whole community as we attempt to work out what makes the human flourishing as we hold all those who are vulnerable. It demands that we refashion what it might mean to be human and limited and bounded by our bodies and brains. In other words all of us can learn about how to live well as we attend to those who struggle to maintain well-being. There is a quality, integrity and life to these accounts which we can all learn from.
I should also add that there is a comprehensive and helpful range of resources and further reading at the back of the book along with a clear glossary. Let Prof Graham Stokes have the final word (global director of dementia care at BUPA)
“for some who read this book the experience will be an epiphany. Therefore might it be possible that what we do to help a person with dementia, in some way to be kind to them, is diminished only by the limits we place on our ambition, imagination and humanity’ ( page 259).
Kate Swaffer was 49 years old when she was diagnosed with dementia. In this book, she
describes her experiences of living with dementia, exploring the effects of memory difficulties, loss of independence, leaving long-term employment, the impact on her teenage sons, and the enormous impact of the dementia diagnosis on her sense of self.
There is a profoundly challenging honesty about the experience and especially the stigma associated with dementia and the many inadequacies in care and support. Kate wants to change the way we both think about and respond to dementia and offers some radical suggestions about how a community might hold all those who because of dementia are taken into the difficult area of needing to develop a new and meaningful personal identity.
Let Kate have the final word here: and as I share it I hope to that this book will be very widely read.
These two books remind us that as well as listening to the experiences of people living with dementia there are significant political, economic and social challenges to improving and developing care.
I picked up the first book (Qigong for well-being in dementia and ageing by Stephen Rath JKP 2015 168 pages £15.99) with some ambivalence and curiosity but soon moved beyond misunderstanding and prejudice to see how traditional Chinese medicine can support emotional and physical well-being in people with dementia. This book presents a set of exercises and breathing techniques which I tried and found them to be very restorative! The book is carefully illustrated and deserves some careful attention amidst our reductionist and medicalized approach to care.
Person Centred Dementia Care (by Dawn Brooker and Isabel Latham JKP 2015 224pages £17.99) has very quickly established itself as a leading textbook in guiding healthcare professionals to improve care from diagnosis to the end of life for people with dementia. It embraces a range of contexts and offers guidelines for practice. It is well written, carefully organised and accessible for a busy healthcare professional. The text is clearly earthed in reflective practice and draws upon up-to-date research and development in this area.
Although at first glance a technical book with a limited market the authors open up a refreshingly broad grasp of an individual living with dementia and each of the chapters lead us into a richer understanding of what person centred care should look like. There are many places in my own experience where I should like to take this book and ask that it be used to change care.