Signpost Book Reviews  Vol  15.1 June 2010

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Telling Tales About Dementia: Experiences of Caring
Editor: Whitman, L
Publisher: Jessica Kingsley
ISBN: 9781843109419
Price: £14.99

As the title indicates this is a book of stories by carers - thirty in all, and as might be imagined it cannot escape the monotony of tracing a similar trajectory over and over again. Most of the tales emphasize times of confusion and despair and inadequate provision of services, and when they are accessed the inadequacy of what was on offer. If one had any doubts on that score, the message is proclaimed loud and clear that we have a long way to go before professional dementia care in this country could even be described as adequate.

So this book is better dipped into than read straight through, unless you are someone who welcomes a wallow. And there are real plums to be pulled out. Of the grimmer narratives Anna Young’s stood head and shoulders above the others for me. It takes the form of journal entries, and she has an admirable command of ideas, and the language in which to express them. The final two paragraphs raise really profound issues, and I commend them to anyone who wishes to seriously engage with the carer’s role.

Here is an extract:-
‘It is not possible for two to survive in this relationship without some massive realignment of the boundaries. The re-thinking or re-definition that is required takes enormous energy, as the carer’s needs are superseded by the needs of the sufferer. Even if it has been an unequal relationship, the carer becomes the controller of the other: necessary, because otherwise the dementia controls. The dementia is not the person’.

Amidst much negativity it is good to be able to draw attention to a number of contributions which give positive pointers to strategies we can use. They are, of course, all psychosocial approaches, which means they are currently undervalued and underfunded, but this has nothing to do with their worthwhileness.

Steve Jeffrey, whose mother had multi-infarct dementia, stresses the value of actually listening to what the person says, taking it seriously, and writing it down. One day he said to her:
“Let’s not cross that bridge till we come to it.” As it came out, I just knew it sounded pompous, but Mum’s response gave me my come-uppance. “And don’t you be so snooty if you haven’t got such a snoot!”

Barbara Pointon says “Communication is much more than words” and brings out the importance of music-sharing as an extra language of real potency. For Rosemary Clarke spirituality is the keynote of the experience of her mother’s late dementia. She puts it this way: I learned much, especially in the last year or so --- about being less cerebral, about what that word ‘grace’ could mean, about the loving kindness of the nursing home staff.

There is also a poem by Maria Smith called ‘Feisty Love’ which contains the following memorable sentiments:

I’d like to grow a memorial garden where our lives together once stood:
I’d celebrate our good times with a vibrant bed of red tulips, lay down all unresolved conflicts and unanswered questions on a thick patch of calming lavender.

Lucy Whitman has made a real effort to be comprehensive in her choice of contributors, with Burmese and Pakistanis being represented, and lesbian and gay carers included. There is, however, one miscalculation: there are no fewer than twelve carers of younger persons with the condition writing in these pages, a serious distortion of the situation in the country at large.

John Killick Dementia Positive

Person-Centred Counselling for People With Dementia. Making Sense of Self.

Author: Danuta Lipinska
Publisher: Jessica Kingsley
ISBN: 9781843109785
Price: £14.99

In this thought-provoking book Danuta Lipinska explores the positive impact of the patient-counsellor relationship, reflecting on her twenty years of counselling experience. Although this will be of great value to counsellors and care professionals, those not working in these fields may have difficulty with some of the terminology used. However, the overall message of the book is extremely beneficial to people with dementia and their families and carers.

The author chooses not to describe dementia in any detail, as she feels this takes away from considering the individual first. Instead the book begins by focusing on how people with dementia can ‘stand tall’ and feel empowered and have a sense of control over their lives. Several theories of counselling, including the importance of the Self, are tied nicely together by including quotes from professionals working in the fields of dementia and person-centred counselling. When covering the counselling process the therapeutic relationship is considered significantly powerful in the overall outcome and personal experiences are included as evidence.

The book’s final chapters acknowledge the value of person-centred counselling, particularly considering biological, social and psychological factors that make up the Self and how to communicate effectively with those whose memory may be impaired or have difficulties in speaking.

The primary aim of this book is to encourage the realisation that people with dementia should be provided with professional counselling to help them in making sense of their lives. After reading the author’s passionate views and her illustrations of the positive impact of person-centred counselling; I couldn’t agree more.

Emily Griffiths, Assistant Clinical Psychologist, Mental Health Services for Older People.

Dementia and Well-Being: Possibilities and Challenges
Author: Cook, A
Publisher: Dunedin Academic Press Ltd
ISBN: 9781903765760.
Price: £14.50

Dr Ailsa Cook has written this book with the aim of critically reviewing how Health and Social Care policies in England and Scotland impact on service users and more specifically on the well-being of people with dementia. She focuses not only on empirical research, but she draws greatly on the perspective of those influenced by dementia. The book consists of four main policy objectives that are considered to be vitally important in the development of well-being: promoting independence, health, choice and control, and social inclusion. Cook brings to light how the Health and Social Care system is failing people in the diagnosis, treatment, and management of dementia, and critically analyses the challenges and recommendations that may help overcome such short falls.

The book discusses how being in good health is generally the foundation by which well-being can be built on. The complex and difficult relationship between health and dementia is considered, drawing on how important the quality of care is for people with dementia. The writer goes on to explain the significant development of intermediate care services, not just for older people but also for people with dementia. She highlights the importance of local tailored initiatives and drivers being put in place in Scotland to suit the needs of those concerned, and the importance of public awareness, improvement of early diagnosis, and quality of care initiatives within England.

Cook examines the importance of promoting independence for people with dementia, what independence means to them, and what key issues surrounding independence should be focussed on by policy makers. She looks into the different views policy makers and people with dementia have of independence. The challenges to promoting independence are also discussed with reference to the nature of dementia, the lack of availability and access to community-based services, the poor quality of assessment and co-ordination of support services, restricted access to quality of domiciliary care services, and the scarce availability of support for unpaid carers. The policy responses are discussed focusing on the issues surrounding the funding of Health and Social Care support and the development of the Partnership Model of funding as recommended by the Wanless Report. The writer then describes two sets of policies that aim to increase the promotion of independence: Supporting Carers and Telecare.

People with dementia have over the years not received support in being able to make their own choices or to have much control over their lives. This is now changing and is becoming a priority within more recent agendas. Cook highlights that in England a number of initiatives have been put in place including the need for an increase in self-directed support. In Scotland they also offer self-directed support but focus more on personalisation, thus joint decision making about what care and support the person with dementia wants to receive.

Social inclusion has been identified by people affected by dementia as vitally important in the promotion of well-being. However; it is again very poorly identified in current Health and Social Care policies. It is clear that social exclusion is more commonly discussed when referring to the importance of social inclusion. The writer explains that the process of social exclusion is driven by the ‘structured dependency’ of people with dementia, cultural processes, and stigmatisation. She stresses that these processes create considerable fear of social exclusion, yet social inclusion is not yet a target in dementia specific policies.

The writer argues that people with dementia do have the capability to develop their well-being. Through person-centred care they can develop their self-identity, personhood, and self-determination. The four main policy objectives focused on in this book are incredibly important in developing well-being but unfortunately are not supported adequately within the Health and Social Care system. A prominent recommendation within this book is that the development of policy documents must involve people influenced by dementia throughout the whole process as they are experts in knowing what is required to be socially included, to receive adequate support in diagnosis, treatment and management of dementia, and ultimately what is needed in order to develop a heightened sense of well-being.

I highly recommend this book for anyone interested in, working in, or studying dementia. This book is an excellent contribution to the academic debate constantly growing around dementia specific policy development. It must be noted however that despite the policy development being focused on England and Scotland in this book, the argument still has a significant place within all countries.

Amy Jenkins Primary Mental Health Worker, Trehafod Child and Family Centre.

Good Practice in Safeguarding Adults Working Effectively in Adult Protection
Author: Multiple
Editor: Jacki Pritchard
Publisher: Jessica Kingsley
ISBN: 9781843106999
Price: £19.99

The current book has been contributed to by multiple authors from the voluntary and statutory sectors and has been edited by Jacki Pricthard. The book sets out to provide readers with an overview of issues in adult protection including highlighting the developments that have been made in policy, legislation and practice.
The book encourages thinking about adult abuse by identifying particular groups of vulnerable adults that aren’t as widely discussed and recognised in the wider society, for example people with brain injuries, older prisoners and adults from black and minority ethnic communities. Further issues of domestic violence, honour-based crime, abuse in institutions, financial abuse and risk assessment in adult production are also covered in the book. The way the book addresses some of the key issues impacting on services and engaging service users is very informative.

The authors provide information on current guidelines in adult protection and many areas of best practice. Specific chapters have also highlighted the procedures statutory services have used to develop their working in adult protection and how they are now working to safeguard vulnerable adults. It details the development of the Vulnerable Adult Policy in North Wales and also the work of an Adult Protection coordinator working for Lincolnshire County Council. This works to provide insight into the way that the process has been approached and how effective systems can be set up and further developed; being informative for agencies starting the same process and individuals working in similar roles.

The use of case studies throughout the book keeps the reader mindful of the people affected by the issues discussed and also demonstrates how the policies and guidelines can relate to real life situations. It provided an effective and personal way to broaden the thinking and understanding of adult abuse.
This book as a whole will be a beneficial source for many people working with vulnerable adults; it will provide an appropriate background of how current policies have developed and the factors that have been influential in shaping such policies. It will also give workers an insight into best practice within adult protection and some of a worker’s responsibility to protect vulnerable adults and prevent abuse. It is also very effective in providing an overview of the reality of adult abuse, what would be seen as abuse and the situations it can occur in.
Hannah Clarkson, Assistant Psychologist
Aneurin Bevan Health Board

How to Make the Care Home Fun. Simple Activities for People of All Abilities
Author: Agar, K
Publisher: Jessica Kingsley
ISBN: 9781843109525
Price: £14.99

“How to Make Your Care Home Fun” emphasises that “as we grow older, our need to be engaged in interesting activities does not diminish and is vital to our quality of life”. The book describes how engagement in purposeful activity enables one to meet their social, psychological, creative and cultural needs; improving quality of life, suggesting that through these activities, one is able to find meaning in life and express who they are to the world. One may critique that the subtitle “simple activities for people of all abilities”, may be not be explicit enough, and possibly even a little misleading as one may perceive this to be aimed at people with learning disabilities rather than older people of all abilities. However, the inexplicit sub-title may also be viewed as a strength, as it may very well expand it’s audience, which in the case of this book’s content could only be beneficial to anyone working within the caring profession, especially those working with people with learning disabilities.

The book commences with the examination of how care homes are run, how they are regulated in the light of recent legislation, and how they are inspected. It considers what services are provided by care homes and what is lacking, making a strong case for the provision of individuality and person- centred care for “people with many needs and many assets”. The book expresses the importance of focusing on a more integrated approach to care, not viewing activities as an extra or a treat.

After highlighting the effects of lack of stimulation and the benefits of engagement in activity, the author, chairman of the Exmouth Alzheimer’s Society for thirteen years, offers a practical array of stimulating activities including gardening, music and creative writing, aimed at older people of all abilities in nursing and residential homes, day centres, rehabilitation centres and hospices.

Each chapter covers one activity and is written in an accessible way, making it simple to select, understand and facilitate these activities in which interest has been expressed. The majority of the chapters include a similar content structure, including some educational background information, benefits of engagement, precautions and possible difficulties (and how to overcome these), preparation, practical advice and guidance, an activity programme and additional literature/ professional contact details for further queries or information.

Acting as an educational manual for any carers willing to facilitate activities themselves, the book describes in helpful detail how activity organisers can develop a wealth of different kinds of creative, interesting and participatory activities for the residents in care.

Throughout the book, the author expresses his awareness regarding the financial costs which activity resources can incur. The author responds to this issue by, throughout the book, providing practical ideas to successfully creating or obtaining valuable, stimulating resources in a way that costs little or nothing at all.
Overall, this is a most certainly recommended book and ideal resource for any care providers needing some fresh insight and inspiration, especially those whose role it is to provide activities in a day care or residential setting. The book acts as a comprehensive guide to help make a care home fun and stimulating, and it has successfully highlighted the value of a quality of nursing which aims to provide for an individual's physical, mental and emotional needs and overall quality of life.

Mariëlle Wilcox, Assistant Psychologist,
Intensive Community Intervention Service,
Learning Disabilities Service, Aneurin Bevan Health Board.

 

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