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Signpost Book Reviews Vol 12.1 June 2007

This page shows books which Signpost has reviewed. If you would like to become a Signpost book reviewer, please contact Signpost. For guidelines click here.

For a full list of published reviews click here.

Ethical issues in Dementia Care: making difficult decisions
Authors: Julian C. Hughes and Clive Baldwin
Publishers: Jessica Kingsley Publishers 2006
144 pages
ISBN 1-84310-357-5

This paperback is a fifth volume in a series of Bradford Dementia Group Good Practice Guides, and it should come as no surprise that it is both accessible and informative. The low-key cover is devoid of capital letters, apart from the University of Bradford logo and motto ‘making knowledge work’. It is probably unlikely that anyone will mistake it for a collection of E.E Cummings poems.

The writer’s stated aim is to provide help to carers - predominantly non-family, formal ones - by reflectively considering some of the core ethical issues. This goal is achieved over a course of six chapters, and draws on a wide range of experiential material. The starting point is the parameters of moral theories and ethical decisions, and clear explanations are given of consequentialism, deontological ethics and principlism. Case examples are used throughout the book to highlight actual or anecdotal insights.

The fourth chapter addresses the paradoxical attitudes behind the anxiety-provoking ‘keeping them safe’. Many nurses would justifiably argue that risk taking is an integral part of any individuals life experiences, and in my experience this has been mostly often advocated by male nurses. So it is especially interesting to read that perhaps

there are intrinsic characteristics to care that are in some sense feminine, but which can be demonstrated by men, too. More than that, we would argue that men must show these qualities in order to show proper care” (page 75).

It is perhaps a little unfortunate that in the midst of the information covering aggression, inappropriate behaviour and medication compliance that old misnomer ‘wandering’ ambles into the debate. Such usage has blurred links with the malignant social psychology which Kitwood so regularly questioned. To be fair, a note is made about the term, but it is rather tucked away, 17 pages later, conceding that “’wandering’ may reflect a perfectly reasonable desire to go somewhere to achieve something” (page 93).

On a more positive note, it is always interesting to have a wider range of referenced works: here we have Aristotle, John Donne, Martin Heidegger, Werner Herzog and ‘another giant thinker from the twentieth century’, Ludwig Wittgenstein. In their concluding summary Hughes and Baldwin acknowledge the importance of reflection, and it is clear that there is much to reflect on here.

Stephen Weeks BA(Hons), RMN is a CPN based at Ossett CMHT, South West Yorkshire NHS Trust.

Caring for Kathleen: A sister’s story about Down Syndrome and dementia
Author: Margaret T. Fray
Publisher - Kidderminster : BILD Publications (2000)
ISBN: 1 902519 19 1
Price: £16.00

‘For Kathleen Anne – My gentle little sister. Together we travelled to the end of the road and I have kept my promise. This is your story…’

The dedication above represents the start of Margaret Fray’s profoundly touching story of her sister Kathleen’s experience of Down’s Syndrome and dementia. The reader is led through Kathleen’s life story as told by her sister Margaret. Through her eyes we are presented with a history of growing up in the late 1920s with a family member who has Down’s Syndrome, and are also shown how services for people with Down’s Syndrome have developed in the last 80 years.

Caring for Kathleen describes some of the unfortunate realities of growing up with a person with Down’s Syndrome in the 1920s compared to the modern day. Indeed, Margaret recalls that at her birth their mother was advised to ‘put her daughter into an institution and try to forget that she had been born…’ The reader is quickly reminded that even in these so-called modern times, similar advice is still often given. Whilst Margaret could have focussed exclusively on the difficulties

Kathleen and her family faced, her telling of the story enables the reader to get a real sense of Kathleen as a person and one is left feeling that with the devotion and unconditional support of both her mother and sister, Kathleen grew-up to be a very determined lady who made the most of all that life had to offer her.

From Kathleen’s early and adult years we move through to Kathleen’s late 50s. It is these years that Margaret calls ‘The Realm of Stillness’ and the rest of the book describes Kathleen’s later life characterised by dementia and other health problems up to her death at aged 70.

This book is beautifully written and well presented, and Margaret provides us with a unique perspective as a sibling and carer for someone with Down’s Syndrome and dementia. Whilst it was written in 2000, one cannot help but feel frustrated and somewhat disappointed that the many challenges Kathleen and Margaret had to face at the time are still a reality today. It is still incredibly difficult to find services that can appropriately support those who often have a triple disadvantage of being an older person with Down’s syndrome and dementia. I would recommend this book to anyone working with older people with learning disabilities. Indeed, I would be surprised if those who work with older adults, but not within the learning disability specialty, did not gain something valuable from reading this book. I plan to make it an essential text for any trainee clinical psychologists I supervise or health care professionals/support staff to whom I provide teaching.

Dr Kerry-Ann Holder

Chartered Clinical Psychologist,
Merthyr Tydfil Community Support Team,
Directorate for Learning Disability Services,
Bro Morgannwg NHS Trust

Making Sense of Spirituality in Nursing and Health Care Practice: an interactive approach.
Author: Wilfred McSherry
Publisher: Jessica Kingsley, London, 2006
216 pp
ISBN: 1843103656
Price: £14.99

This book’s second edition has been adapted for the use of a variety of health care professionals, rather than only nurses, although the author's own nursing background naturally informs his position.

The seven chapters are clearly written; each one comprising of well researched and documented themes, and packed with case studies, questions, activities and quotations. Brought right up to date with current legislation, each section addresses topics from `what is spirituality?' to `The skills required for providing spiritual care'. At the end of each chapter a thorough bibliography is followed by a helpful shorter list of recommended books.

Chapter one examines the roots of modem healthcare in specifically religious institutions, and then considers the expectation of the present day patient, acknowledging that for many, their main concern is to be made well, and to put off death for as long as possible, without considering any of the issues of mortality arising out of their present situation. McSherry deduces that spirituality is that which finds some sort of answer to the mystery of everyday life, and that one of the major problems of present day health care is the tendency to consider the specific medical condition from which the patient is suffering, rather than the patients themselves.

The next chapter explores spirituality, and its relevance and importance in everyday life. He emphasises that whilst spirituality may include religious belief and practice, this is often not the case, but that all people try to make sense of life, particularly in times of crisis.

Chapter three considers `holism', that view which sees the patient as comprising of four parts, the biological, the psychological, the social and the spiritual.

The following chapter looks at the provision of spiritual care, recognising that however competent the chaplains may be, initially, and frequently, it is the nursing staff who are in the position of witnessing spiritual distress, and they who have the opportunity to meet the patients' initial needs. McSherry recognises the necessity of correctly assessing and logging, each patient's religious affiliation, and the need for sufficient care to be taken to understand what it is that the patient truly requires. He also highlights the fact that whilst most nurses do have the ability to respond appropriately to a patient's initial spiritual requirement, often simply compassionate listening, many staff do not have confidence in their own competence. He also notes that only those who are confident enough in their own belief system to be able to accept whatever view the patient holds without judgement can successfully accomplish this task.

Chapter five looks at barriers to the provision of spiritual care, the initial one being the difficulty of the convergence of a. the patient's need, b. the care-giver's time and c. an appropriate private space being available! In the next section, given that all this can be achieved, it is then necessary to be aware of one's own limitations, and to recognise the point at which one's own competency ends. The need for attentive listening is emphasized, also the need for honesty and openness and self-awareness on the part of the spiritual caregiver. What McSherry does not highlight is the possible use of chaplains as support for the front line staff in this process.

The last chapter looks at developments in spirituality, and the many studies undertaken in recent years to endeavour to ascertain the true spiritual needs of patients. What is certain is that spirituality is an integral part of the human state, and that attending to the spiritual needs of patients in our care will contribute to their general well-being.

This is a well-written and useful book, particularly for those healthcare professionals who, with a little more confidence, and perhaps some Chaplaincy support are well able to support their patients on their spiritual journeys. It would also be an excellent tool for learning sessions between Chaplaincy and nursing staff, along with other relevant professional groups.

Marika Savage-Lewis, Chaplain, Cardiff and Vale NHS Trust

Ancient Mysteries: Stories from the Trebus Project
Edited by: Mark Brown and David Clegg.
Limited edition; available from www.trebusprojects.org.
148 pp
Price: £15.00

This book contains a remarkable series of narratives by people with dementia, put together by David Clegg, director of the Trebus Projects - a series of adventures in art, music, and spoken word named in memory of the Polish veteran Edward Trebus. Trebus filled his house with things that other people had decided were rubbish, convinced that in time a use would be found for them. In a similar way Clegg has become an archivist of the memories of people with dementia, determined to capture them before they are lost for good.

The urgency Clegg attributes to this work is palpable ‘Just how close to the edge we came,’ he says, ‘is clear from the fact that there are half a dozen stories here that include the last ever spoken words of the contributors’. Some – like Elsie – had been considered more or less mute before the project began. Her story begins, with the words ‘I’m so pleased to do this…. I never thought I was popular enough to write a biography’.

The material in the book is often hugely entertaining, often deeply troubling. There are 28 stories here, ranging in length from 27 exuberant pages to two faltering lines. We meet an array of fascinating characters including the ‘Belle of Bangalore’, Lulu’s dressmaker, Sybil Thorndyke’s maid, acquaintances of Doris Day and Amy Johnson, a Bletchley Park code-breaker. We also meet, over and over again, people whose lives have been blighted by poverty, by the early death of parents, by sadistic teachers. The broad sweep of 20th century social history unfolds alongside the quirky and mundane. And everywhere there is the memory and impact of war.

Molly tells the story of what appears at first to be a conventional happy childhood, until we realise that within her family TB, diabetes, epilepsy and rickets carried off one member after another. Ellen ends her story with the homely recollection that she’ll have to go now because she’s left a pan on the stove. Elizabeth refers to her questionable diagnosis as ‘Outsider’s disease’, and Sheila bemoans the disappointment of a reunion with her newly-wed soldier husband due to the bromide the army had put in his tea.

The title ‘Ancient Mysteries’ was chosen by Catherine whose own story ends the book. Whether deliberately or not the last few pieces reflect the importance of interpretation in life story work, and the possibility that some mysteries – like the nature of Daisy’s relationship with her father, and Meg’s with her employer – may never be resolved. Catherine’s story is particularly rich in metaphor and allusion, with its references to balloons, silver boxes and umbrellas, baths of cold water and chopping knives, to dividing up minute quantities of bread, and to never wanting children because ‘they would all have been crying for bread’ and people would start calling her ‘bloody Jew again’.

Reading Ancient Mysteries I was reminded of these lines from a poem by Keith Douglas (‘Forgotten the red leaves’)

Almost forgot. How slowly they return
Like princes into the halls they once owned.

Douglas was a poet of the second world war, and the lines speak of the difficulty the dispossessed have in reclaiming what should be theirs. For some of the contributors the recovery of memory can almost be heard happening in the process of this intense, communication. ‘Such a long time ago, it seems’, says Sid, ‘like I’d forgotten it for centuries’. Jean reflects on how ‘these things keep coming back at midnight – nothing in the day’, while Catherine asks ‘I wonder why it is I can remember these things? I’m wondering now if I’m the only person who remembers….’ In lines like these there is a definite sense of the return of something precious and lost. There is a generosity and humility about this book which owes little to the dogma of a personhood somehow bestowed upon those with dementia by the ‘cognitively intact’. This is just about listening and bearing witness to what is already there.

Andrea Capstick,
Bradford Dementia Group

Depression in Later Life
Authors Jill Manthorpe and Steve Iliffe
Publisher: Jessica Kingsley
166 pages pb
Price: £13.95

As the authors state at the start of this book, depression is the commonest mental health problem in later life, so a book dedicated to this condition is to be welcomed. It aims to present both a medical and a psychosocial model. In the first chapter it describes what depression might be and discusses and describes various forms of depression, e.g. major depression, minor depression, dysthymia and adjustment disorders.

Other chapters look at how depression impacts on the person themselves, their family and the wider community and the difficulties there may be in engaging the person in treatment. There is a chapter looking at ways of treating and helping people with depression, and a very good chapter looking at depression and dementia. Another chapter looks at the relationship between depression anxiety and psychosis. It illustrates how complex the relationships between these symptoms can be.

Though the symptoms of depression and anxiety are explained I did not think those of psychosis are well described. There are other chapters on suicide and self-harm and also the support of carers which are well researched and comprehensive. The last chapter which is called Conclusion gives some detail on how services might be planned for the depressed elderly person, and some ideas for audits.

The book describes itself as ‘authoritative and concise’, and indeed it is. It is written for health and social care professionals but one is left wondering at times which level of staff might benefit the most from it. I would describe its style as uneven. Some parts, particularly at the beginning of the book, are written in a very simple and straight forward style illustrated by helpful learning points which could be of use to non-qualified staff, whereas later chapters adopt a much more academic tone. The book does not underestimate the complexity of depression in the elderly, and while it is positive about treating people with depression, it points out that there are not always easy answers, which is helpfully realistic.

Dr Anthony Williams Consultant Psychiatrist
Cardiff and Vale NHS Trust

Dementia: walking not wandering

Edited by Mary Marshall and Kate Allan

Published by Hawker Publications Ltd 2006

115 pages

ISBN 1-874790-68-X

Price: £14.16

This paperback, from the publishers of the Journal of Dementia Care, has the potential to seep into the consciousness of the reader and remain lodged there for future reference. In some respects it isn’t primarily a ‘fresh approach to understanding and practice’, but more a confirmation and affirmation of a vital tenet underpinning genuinely person-centred care. ‘Wandering’ is rarely a valid description of what the individual does (or aims to do), and acceptance of that is pivotal to effective dementia care and understanding.

Here, over a series of ten sections, thirty-six contributors acknowledge, discuss, formulate and evaluate their shared “commitment to a more considered approach to the term ‘wandering’” (page 4). It would be patently unfair to single out any one of the writers for specific praise, so here are two luminaries in a collection of many – Claire Craig and Graham Stokes. Craig is an occupational therapist and “keen walker” whose career I have been fortunate to follow, dating back to early conference presentations. Neatly dovetailed with her is Stokes, who I had the privilege of hearing at a Dementia Forum in Sheffield in October.

The tiniest quibble would be that in a black and white publication some of the photographs (and certainly the painting reproduced on page 58, by Mitchell) were originally in colour. But any book that utilises a poem by Norman MacCaig (page 40) and an extract from Bryson’s Notes from a Small Island (page 97), where the Anglo-Saxon oath is totally integral to the piece, should be read for the sheer pleasure – and optimism – it instils.

Stephen Weeks BA (Hons), RMN is a CPN based at Ossett CMHT, South West Yorkshire NHS Trust.
stephen.weeks@swyt.nhs.uk