Signpost Book Reviews Vol 12.2 October 2007

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Ethnicity and the Dementias (second edition)
Edited by Gwen Yeo and Dolores Gallagher-Thompson
Routledge (Taylor & Francis Group)
2006, 390 pages (paperback)
ISBN 0-415-95405-3

This second edition was printed ten years after first publication. To put that into some sort of perspective, John Major was the Prime Minister and, probably more pertinently, given the subject matter, dementia was rarely discussed openly. Things have changed – now the Alzheimer’s Society have a clear aim to draw attention to anomalies regarding NICE guidelines, as well as doing their sterling work.

The globalisation of dementia is addressed here: the joint editors are active members of the Stanford University School of Medicine, and draw on a range of contributors – numbering forty-eight in total - from seats of learning across North America. Some references and spellings might differ, but the message is that dementia is a concern across every spectrum. Interested parties should be drawn to www.alz.org, which provides input into the Alzheimer’s Association, and offers a diversity toolkit which “can be helpful in assessing the cultural significance of psychiatric symptoms and subsequently determining the contributors to these systems” (pages 16-17).

Under scrutiny here is the rather contradictory issue of how uniformity can be adapted to effectively monitor diversity. Hargrave makes the telling point that cognitive assessments can be affected by a complex network of social, environmental and psychological variables. One can readily recognise a need, due to problems of measurement bias associated with the MMSE (Mini-Mental State Examination), to “employ numerous statistical adjustment strategies to improve the test’s validity with ethnic minority elders” (page 42). The inherent difficulty with the premise of tailoring measuring tools to suit individuals is that the myriad amendments required would possibly tax Nobel laureates.

Seven other such assessment instruments are considered – the Mattis Dementia Rating Scale, the Blessed Information-Memory-Concentration Test, the Blessed Orientation Memory-Concentration Test, the Short Portable Mental Status Examination, the Cambridge Cognitive Examination, the Boston Naming Test (with its 60 item instrument to provide a detailed examination) and the Consortium to Establish a Registry for Alzheimer’s Disease Neuropsychological Battery. Expectedly, each generates an acronym.

It might appear almost perverse to acknowledge that this paperback has been produced for all the right reasons – to offer clarity and offer positive supportive information. For all the developments and progress gained by advancements in practice and expertise, stigma and misinformation continue to be major concerns, as when the culturally-based stigma regarding AD (Alzheimer’s Disease) might also prevent Chinese American caregivers from seeking help earlier. For example, a caregiver from Zhan’s study reported: “Some of my dad’s friends suggested we relocate our house and they thought my mom’s ‘craziness’ was caused by bad feng shui”” (page 180).

For impartial European readers the most striking dilemma could be the sense of frustration at needing to utilise should a wide-range of paperwork, to cover such a cosmopolitan ethnic range. Health professionals in America evidently need to be at least tri-lingual. To round off the conglomeration, the penultimate chapter (by Coon and Burleson) examines the resultant issues from ‘working with Gay, Lesbian, Bisexual, and Transgender Families’, where prejudice and stigma again resurface.

This book is neither a light nor an easy read: it offers salient information about how dementia can affect, and might one day impinge, on pretty much the lives of every individual on the planet. In some respects, it is also particularly daunting, as lightness or humour rarely, if ever, surface. Understandable, most might expect, given the subject matter.

And yet, and yet .. humour should have a role in dementia care: witness the fond recollections which followed the death of George Melly. As Jim Ensom related in a letter – ‘At a concert a few years ago George Melly ended up on the wrong side of the stage – away from his crib sheet and unable to recall the next song. “Wonderful thing, Alzheimer’s,” he said. “You meet a whole new bunch of people every day.” It brought the house down’ (The Guardian, July 7, 2007).

Stephen Weeks BA(Hons), RMN presently works in day care services for South West Yorkshire NHS Trust.

The Man Who Lost His Language
A Case of Aphasia (Revised Edition)
Author: Sheila Hale
Published by: Jessica Kingsley Publishers
London and Philadelphia 2007
ISBN: 978 1 84310 564 0
£13.99 pb

The medical dictionary definition of ‘aphasia’ is ‘a complete absence of previously acquired language skills, caused by a brain disorder that affects the ability to speak and write, and/or the ability to comprehend and read’. If we think about that for a moment – most of our waking hours are spent in some form of communication. That is what we do best perhaps. Now let us think about the situation if that were no longer possible. In some small way this can be compared with finding ourselves in a foreign country where we are unable to speak or understand the native language and unable to recognise name places or sign posts. It would be a frightening, isolating and unforgiving place.

Stroke affects between three and four people per 2,000 per year in the UK. It is the single biggest cause of severe disability and the third most common cause of death in the UK. About a third of people who have a stroke will suffer from a degree of aphasia and there are an estimated 250,000 people living with aphasia in the UK. People with aphasia have described the experience as being “locked inside my own head”.

Sir John Hale was a brilliant Renaissance historian. The son of a doctor and a nurse, he grew up in a gentle, bourgeois environment and from the age of eight he spent many hours each day writing. He wrote poems, plays, stories, accounts of extraordinary and ordinary days in his life. He deferred a scholarship to Oxford and went straight from school to train as a radio operator, in preparation for joining the Merchant Navy. After the war, Sir John went to Oxford and later accepted a History Fellowship at Jesus College. He later became Chairman of the Trustees of the National Gallery, Trustee of the Victoria and Albert Museum, Chairman of the Theatre Museum, member of the Royal Mint Advisory Commission, member of the Museums and Galleries Commission and many other such positions. He wrote and appeared in television programmes, delivered lectures about the meaning of quality in the Renaissance to business conferences all over the world, as well as having two lengthy study visits to Princeton. He was knighted in 1984. Then in 1992 at the age of 69 he suffered a stroke which left him with right sided weakness and severe aphasia.

This book, written by his devoted wife, is an intimate account of his personal trauma, as well as her own search to understand the causes and nature of loss of speech, and her quest to gain knowledge about his condition and how he might be restored to health. It is a moving account of an intimate relationship that is heartfelt and passionate.

As a partner and carer, her suffering might well have resulted in anger or self-pity. Instead we have been given a truly inspired description of the power of love and devotion in the face of adversity. This is essential reading for anyone who wishes to know more about aphasia and related conditions.

This 2007 edition has an additional chapter providing details on the latest developments in science and medicine since the first edition was published.

Dr. Julie Wilcox, Consultant Clinical Psychologist

Regional Stroke Unit, West Wing, Cardiff Royal Infirmary

Listen to What I’m Saying
(DVD 37 Minutes)
Authors: Bernie Arigho and Keith Strahan, 2005
Funding: North West London Strategic Health Authority
Made by: Age Exchange
Price: Free from the Centre for Policy on Aging video@cpa.org.uk or 02075536500

“Person centred care means listening to people to find out what is most important to them and without making assumptions” (Listen to What I’m Saying, 2005)

This is a training video which concentrates on Person Centred Care and the Single Assessment Process of Older People. The video follows three different staff (a Social worker, a Community Matron and a Community Mental Health Nurse) in their work with Mr Crofts, Mr Needs and Mrs O’Carroll.

As someone with a vague understanding of the terms ‘Single Assessment process’ and ‘Person centred care’, the video presented these concepts well. It helped me understand how a single assessment allows for needs to be assessed thoroughly, but without procedures being needlessly duplicated by different agencies. It also helped me understand the advantage of having a single, key member of staff to oversee the care-package and avoid confusion for the client, family….and us! (i.e. in care services).

I liked the way the film used a fly-on the wall approach as we saw the different professionals carry out assessments and reviews with the clients. As heavily stated, no actors or prepared scripts were used thoroughout filming. This made the video much more watchable and I found myself laughing at times (e.g. at Mr Needs’ jokes) and then filled with admiration at other times (e.g. when Mrs Carroll, a dementia sufferer, sings through a whole song word perfect). I also found it useful when the camera zoomed in on the computer screen or patient file so you could actually see what a care plan looked like.

The film is filled with lots of care service jargon (e.g. ‘care co-ordinator’, ‘SAPs’) and is mostly directed at professionals. However, the video is easy to watch and clients and families may find it helps them to understand the whole care-process and some of our Masonic-like language.

In summary I found the video very watchable and useful for my understanding. All the participants were extremely positive - but it did leave me wondering how a personalised review would be with, say, a more difficult client. I would advise watching this video if you are unsure of the terms ‘Person Centred Care’ and ‘Single Assessment Process’.

Will Hallam
Assistant Psychologist, Panic Treatment Service,
Cardiff and Vale NHS Trust