Including the Person with Dementia in Designing and Delivering Care

“I need to be ME!” This poignant cry comes from one of the persons with dementia whose residential care is the subject of this book and it really sums up what the book is about. It is indeed about designing and delivering care and describes in some detail way discovering and assessing the feelings of the clients that are receiving this care and how this knowledge, shared amongst all that are involved, can increase the well-being of the clients. What makes it so interesting and so moving is the author's passionate and compassionate understanding of the unique value of all persons. She used the interpretation of the verbal and non-verbal communication of clients to arrive at some understanding of their feelings: feelings of loss of memory, loved ones, home and self-worth sometimes appearing as anger or depression and withdrawal. No one seems previously to have thought to include clients' views in planning for their changed lives because it tends to be assumed that people with dementia are living in a state of a sort of anaesthesia and this is not so. The author's thesis is that all, managers, staff, carers and family and clients are independent and important. This, and the fact that we are all involved, either through family or friends, or indeed fear for our own futures as part of the increasingly aging population, makes this a fascinating and caring book, appealing to a much wider readership than its title would perhaps suggest.

This book explores ways in which the perspectives of older people with dementia can be recognised. The book examines the history of dementia care and looks at ways in which people with dementia can be understood, before going on to focus on the evaluation. dementia Care Mapping was used as part of the evaluation process, and the book describes how staff were trained to use this technique. This process resulted in marked improvements in the well-being of clients, particularly of those with the most limited ability to communicate.

This is a delightful book, both for its content and its jargon-free elegant prose. Elizabeth Barnett tells the story of her involvement with Green House, a new purpose-built NHS facility for people with dementia, and how she developed ways of enabling her elderly clients to communicate their experiences. How I wish that Elizabeth Barnett were a social worker, because her practice makes a real contribution to social care work with older people with dementia. She comes from a health service administration background and began her work with no practice experience, yet has achieved so much. To begin her practice, she showed determination, vision and creativity, did not allow herself to be discouraged by experienced practitioners, and most importantly, found a suitable mentor in the late Tom Kitwood, who advised her on adapting his Dementia Care Management techniques. Her book contributes a particular application of the narrative technique, which is receiving more attention from social work. (Parton and O'Byrne's book Constructive Social Work, 2000, explored constructions of narratives in social work practice, representing a return to humanist tradition, and Barnett adopts a consonant perspective.) I recommend this book unreservedly.

This insightful book tells the story of Elizabeth Barnett's evaluation of Green House, a purpose-built day hospital and in-patient unit for older people with dementia, and of a subsequent Dementia Care Mapping (DMC) project there. Her lucid and personal style makes the narrative live. She takes her reader through her research process, explaining many jargon terms and drawing out practical issues. In itself this is empowering for potential researchers. Indeed, throughout the book there is a sense of real commitment to the empowerment of all involved in the care process… A remarkable awareness of the interview situation, of their confusion and forgetfulness and of the intimations of mortality was present in the clients interviewed, and the book contains many illustrations of this… Significantly, this project improved the ill-being scores of clients who were mapped, which made a major difference to the care environment… She advocates a reciprocal relationship between clients and staff, a kind of therapeutic companionship more like a friendship… The many different aspects of this book should guarantee a wide appeal - for example, to researchers interviewing people with dementia, those involved in the provision of services, in evaluation, in quality improvement projects and in understanding organisational interconnections. Also particularly commendable is the book's thought-provoking but compassionate approach to all those involved in the dementia care process studied.

Perhaps the most important message of this book is that it is important to talk to patients with dementia when trying to design services for them. All too often, as the author points out, we dismiss these patients as being incapable of contributing to their care… The author needs to be commended on the task she set out to do and for the fact that she obviously was effective in her project-of listening to patients with dementia and translating their needs into the design of the new service.

Elizabeth Barnett entered dementia research through a circuitous path. This meant that no one told her that people with dementia could not express their own thoughts. As a health service administrator, commissioned to research key issues in the design of dementia facilities, she felt a strong ethical and intellectual need to find out what the staff and clients thought. From that beginning her easy-to-read and challenging book arrived… Institutionalised patients do not share our world. The institution, 24 hours a day, seven days a week, is the reality of their lives. Relatives, friends, care staff, even researchers, spend time in their world, and then escape to the reality of their own world. The message is clear. Only if we respect the views of the people we care for will we be able to plan, to provide for, and to care for the most vulnerable adult members of our society with a correct mix of love and compassion.

This book is as fresh, urgent and readable as one could wish. The author's own enthusiasm meets her burning desire to communicate her vital message that traditional approaches to the caring for people with dementia, however well intentioned, have been wanting – an inspiring book which will help anyone involved with services for people with dementia.