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A Cicely Saunders needed

by
28 September 2012

These books are a step forward on dementia, says James Woodward

Key Issues in Evolving Dementia Care
Anthea Innes, Fiona Kelly and Louise McCabe, editors
Jessica Kingsley Publishers £24.99 (978-1-84905-242-9)
Church Times Bookshop £22.50 (Use code CT231 )

Palliative Care, Ageing and Spirituality: A guide for older people, carers and families
Elizabeth MacKinlay
Jessica Kingsley Publishers £11.99 (978-1-84905-290-0)
Church Times Bookshop £10.80 (Use code CT231 )

Who Will I Be When I Die?
Christine Bryden
Jessica Kingsley Publishers £12.99 (978-1-84905-312-9)
Church Times Bookshop £11.70 (Use code CT231 )

HERE are three books from the same publisher which offer us distinct ways into understanding an area of life that few of us give very much attention to.

Key Issues in Evolving Dementia Care is essentially a theoretical book. Edited by academics, it offers the reader an overview, by experts, of the ways in which dementia care is evolving around the globe. We are introduced to the latest theory underpinning dementia care, and the ways in which this is shaping practice.

The book is in three parts. The first offers essays that conceptualise dementia, including an excellent description of a holistic approach to understanding this condition. The second looks at policy development, including attempts in this country to develop a national dementia strategy, and a fascinating essay about how France is tackling Alzheimer's. The final part gives space to discussing innovative ap­proaches to care, including memory clinics, and the importance of the physical environment for people living with dementia. There is an important essay on dementia care in India. The book is carefully edited, and meticulously referenced and in­dexed. The result is a model of good practice in the presentation of theory and research.

Palliative Care, Ageing and Spirituality is an example of how to tackle a taboo subject through the means of practical information. The pioneering and skilled Elizabeth MacKinlay writes a guide to help older people, carers, and families negotiate the very difficult geo­graphy of grief, loss, pain, distress, and suffering. Under­pinning the 14 chapters is a deep commitment to exploring the spiritual issues sur­rounding death and dying. There are particularly good chapters on the fear of dying, prayer, trans­cendence in the process of death and dying, and learning to live without a loved one.

MacKinlay's skills as a nurse and priest are reflected in the simple and compassionate opening up of the questions and some of the con­sequent feelings that surround this important dimension of our living. I hope that the uninviting title will not put people off using this book - they will find in it a trustful and wise guide.

Who Will I Be When I Die? is essentially a story of a career civil servant in Australia who, at 46 and with three children, is diagnosed with dementia. Christine Bryden takes the reader into the experience, raw and complex and frightening, of what it feels like to live with dementia. It is difficult not to read this without having a profound respect for the writer's courage and deep faith, and not to wonder how one might cope with the onset of such a devastating condition. The narrative demands that we ask some of the most pro­found theological questions about human identity, personality, and memory.

This particular experience is also an example of how, for one in­dividual, and indeed many others, the experience of dependence and disability can be a creative one within which faith nurtures virtue and hope. It is also an example of how some people have an extra­ordinary ability to turn the negative into a positive: to use their own pain to reach out to others in a desire to make a difference. Bryden becomes a campaigner for social change for those affected by de­mentia in Australia. It is a moving and inspiring book.

These three books offer a range of important information about dementia: theory, practice, and ex­perience. We need to explore differ­ent ways of opening up areas of human life that we pay so little attention to. Christians would do well to begin to prepare for an ap­proach to human flourishing which includes embracing our limitations, our vulnerabilities, and our mortality.

Dementia and dementia care need pioneers in the same way as cancer care was transformed by Cicely Saunders and other entre­preneurs several decades ago. These books might be seen as a call to Churches to look outwards at some of the consequences of our living longer, and to ask what place our spiritual commitments might play in the better support of people living with dementia.

In the potential for social and spiritual transformation, we need a combination of sound learning and good theory, practical and informed guidance, but, above all, the story and experiences of those most af­fected by this most fearful of con­ditions.

The Revd Dr James Woodward is a Canon of Windsor.

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