Signpost Book Reviews  Vol  9.1  2004

The Burden of Sympathy is a thought provoking sociological review of the experiences of 60 families living with mental illness. The book’s narrative takes us along the emotional journey of the families. Karps’ use of paraphrasing and direct quotes from family members vividly depict the reality of love and concern caregivers feel as well as their anger, fear and frustration. The book provides an empathic insight into how families/carers manage the rollercoaster of a major mental illness and also provides a sense of common experience amongst the families.

Karp encourages the reader to make links between cultural ideas and the conflicting emotions of the family. He proposes that the role of caregiver to a person with a major mental illness provides a unique insight into human emotion and behaviour within the framework of society and its rules. We are invited to question our own beliefs: When is it okay for a parent to stop providing care for their child? Why do people stay in the caring role? How do people balance protecting their own mental health and quality of life with caring for someone who is chronically mentally unwell? Karp does not attempt to answer any one question directly, but rather provides a framework of understanding of the experiences of the families.

CHANGING SERVICES FOR OLDER PEOPLE: The Neighbourhood Support Units Innovation
Alan Warner and Laura Warren
Open University Press
ISBN 0-335-19137-1
£17.99

There used to be an idea that books (predominantly fiction) should open with an unexpected sentence: think of Melville’s ‘Moby Dick’, Orwell’s ‘1984’ or Kafka’s ‘Metamorphosis’, but such an honestly opening gambit should not go unacknowledged. The preface carries an unambiguous appraisal of the background to this book:

"The story .. serves as yet another warning of the dangers involved in conducting research into social policy and particularly social services innovations."

For a work first printed eight years ago, this volume has built up a backlog of critical comments, placing "it in the centre of contemporary discussions about community care and mak(ing) it a worthy read", opined the British Journal of Social Work. Hindsight sometimes reflects such phraseology in a less than positive light.

But that should not necessarily be the case, or the expectation. Once initial thoughts are out of the way, such as the regularly questioned ploy of multiplying the cost of a hardback edition of an academic paperback (soaring to £55.00, from £17.99 here), and a misleadingly perverse page count (officially 208 pages, the seven page index ends on 184), one can come to terms with the information.

The consideration here is of regional reactions to, and developments of, community care as a concept within England over the last twenty-odd years. Some of the myriad issues and complexities arising from such strategies are also analysed, such as community versus residential care, where "it was critical to examine how the intensity of needs affects the ability of older people to remain in their own homes" (page 75).

The Neighbourhood Support Units innovation in Sheffield was focussed on the creation of flexible, ‘needs led’ services and the promotion of both user, and carer, responsive means of provision. Such a development echoed many similar Europe-wide objectives.

Although not unique in its aspirations, this project report quite substantively covers many of the pertinent points about the supportive initiatives. The developmental transition towards community-based alternatives to residential care is explained, discussed and evaluated effectively by the authors and their assembled contributors.

Sufficient and appropriate space is given to assess the diverse issues for the individual’s involved in such projects: chapters four and five consider the attitude of the service users, and the actual impact of the services offered. Chapter six explores the carers’ perspective and the seventh chapter looks at the role(s) of support workers.

The positive elements of their literal support are emphasised: "all of the workers we spoke to recognised the importance to older people of remaining in their homes" (page 127). Within a few paragraphs of that comment the discussion turns to gender issues, and the stereotypical societal expectations about the nature of caring, "Caring was synonymous with femaleness .. (and) a number of female workers still believed it was ‘not a man’s job’… (but) references were made to instances where male support workers had taken over the care of older men because of persistent harassment of female staff ... (and) it might be better if male workers cared for violent or abusive male users" (pages 127-8).

After the penultimate chapter, which is devoted to ‘user and carer involvement in principle and practice’, Walker and Warren’s conclusion itemises the impact and effectiveness of the scheme, considers the lessons and looks to the future of, and for, Neighbourhood Support Units. Such schemes are as liable to be stringently evaluated by accountants as by any health professional, and three ironies conclude the summary: NSUs "have been rolled into an enhanced home care system … (departmental investigations of) the costs of NSUs compared to home care did not find a major difference between them … (and) although the NSU initiative is effectively dead in Sheffield, the concept lives on elsewhere" (page 160).

I am aware that such a harshly direct quote is akin to someone giving away the ending of a Ruth Rendell novel, for which I apologise, but the avenues followed to reach that conclusion are fascinating and an object lesson in how opinion can be swayed. Equally importantly, this book offers a salient reminder that health care issues are rarely amicably resolved.

Stephen Weeks BA (Hons), RMN
CPN with Ossett CMHT, West Yorkshire

The Forgetting: 
Understanding Alzheimer's: A Biography of the Disease.
David Shenk
Harper Collins £15.99 HB
ISBN 0-00-257174-9

This book is a complete marvel: 256 pages that are instantly absorbing, fascinating and, best of all, never feel like homework to read. Shenk takes a biographical approach to describing the identification and development of Alzheimer’s disease, charting the progression of the disease from early to end stage. Using case studies from scientific and political figures from history, Shenk shows the context of Alzheimer’s disease.

Woven through the complex history and recent day pharmaceutical-company posturing, Shenk uses apposite examples of Jonathan Swift, Ralph Waldo Emerson and, more recently, Ronald Reagan to show the unravelling of the self that accompanies Alzheimer’s disease. More than this though, Shenk shows the positives that accompany this journey into what he describes as a second childhood; mainly an opportunity to see Alzheimer’s as a "prism through which we can view life in ways not normally available to us." He has received some criticism for this, but what emerges from his book is that Alzheimer’s disease is not all tragedy.

Anyone with a personal or professional interest in Alzheimer’s disease should read this book.

Elanor Maybury
Assistant Psychologist
Cardiff & Vale NHS Trust

Dementia Care Mapping: Experience and Insights  into Practice
Edited by Dawn Brooker, Paul Edwards and Sue Benson
Hawker Publications, London 2004
ISBN 1-874790-75-2
£9.99 (paperback)

This paperback forms the backbone of Dementia Care Mapping (DCM) in terms of development and practicalities. As one fortunate enough to have been taught the Basic Course by Kitwood et al almost ten years ago, I feel this is an intriguing, interesting and informative record of the progress within the sphere, concept and culture of 'personhood'.

Any document that covers such developments is going to reflect changes in perception and societal expectations. The nature and monitoring of dementia are issues suitably addressed by Brooker, Edwards and Benson.

As befits a method reliant on careful observation, this series of articles similarly draws the reader into highly important areas of study. Any criticism or concern here expressed is primarily focussed on the repeated data, along with the pernicious problem of political correctness.

The crux of this matter is that any reader of the excellent 'Journal of Dementia Care' will presumably have read most of these articles already. That repetitious element, along with a frankly bizarre adoption of 'matronizingly' (as a companion to patronizingly), causes most concern.

The further insidious encroachment of Americanisms/ possible typographical errors might also be addressed: however enthusiastic PhD Program students are at the University of Kentucky Sanders-Brown Center in Aging, their citing of training "based on a 'Golden Oldy' Hollywood film" (page 19) is irritating, to say the least.

Hawker have published an important document here, recording enough relevant and detailed practical advice to enthuse prospective DCM trainees. Particularly interesting is the concluding sequence (pages 96 to 116), where findings from Australia, England, Japan and Finland are considered. It is a fitting tribute to Kitwood that DCM is now steadily being recognised, and utilised, as a global monitoring tool.

The significance of the work undertaken by the Bradford Dementia Group is equally noteworthy - their skills and knowledge-base continue to offer an edge of optimism to dementia care. Many have benefited from their initiatives - I am confident that many more will from this publication.

Stephen Weeks BA(Hons), RMN is a CPN based at Ossett CMHT