Intellectual Disability and Dementia: Research into Practice

by Trevor Chan (Contribution by), Ken Courtenay (Contribution by), Sunny Kalsy (Contribution by), Nicolle Eady (Contribution by), Matthew P Janicki (Contribution by)

Overview

Presenting the most up-to-date information available about dementia and intellectual disabilities, this book brings together the latest international research and evidence-based practice, and describes clearly the relevance and implications for support and services

Internationally renowned experts from the UK, Ireland, the USA, Canada, Australia and the Netherlands discuss good practice and the way forward in relation to assessment, diagnosis, interventions, staff knowledge and training, care pathways, service design, measuring outcomes and the experiences of individuals, families and carers. The wealth of information offered will inform support and services throughout the whole course of dementia, from diagnosis to end of life. Particular emphasis is placed on how intellectual disability and dementia services can work collaboratively to offer more effective, joined up support.

Practitioners, managers and commissioners will find this to be an informative resource for developing person-centred provision for people with intellectual disabilities and dementia and their families. It will also be a key text for academics and students who wish to be up-to-date with the latest research and practice developments in this field.

Product Details

ISBN-13:	9781849054225
Publisher:	Jessica Kingsley Publishers
Publication date:	05/21/2014
Pages:	336
Product dimensions:	5.90(w) x 8.90(h) x 0.80(d)

About the Author

Heather Wilkinson is Co-Director of the Centre for Research on Families and Relationships and Research Director for the School of Health in Social Science at the University of Edinburgh.

Karen Watchman is Senior Lecturer in Ageing, Frailty and Dementia at the University of Stirling, Scotland, UK. She has worked in intellectual disability, ageing and dementia care for over twenty years in both practice and academic settings. Making research accessible has always been a core part of Karen's work and in addition to research and teaching activities, she regularly delivers training and lectures on this topic in the UK and internationally. She lives in Clackmannanshire, Scotland.

Irene Tuffrey-Wijne qualified as a nurse in Amsterdam, and moved to the UK in 1985. She holds a first degree in Palliative Care Nursing and completed a PhD in the palliative care of people with intellectual disabilities at Maastricht University, The Netherlands. Irene has extensive clinical experience in the fields of both intellectual disabilities (as a support worker and home manager) and palliative care (as a clinical nurse specialist at a hospice). She now works as a Senior Research Fellow at St George's University of London, leading a programme of research aimed at improving health care and end of life care for people with learning disabilities. She is chair of the Palliative Care for people with Learning Disabilities Network. She is also author of Living with Learning Disabilities, Dying with Cancer and lives in London with her husband and three children.

Table of Contents

Foreword by Diana Kerr. Introduction. Part I: The Association Between Intellectual Disability and Dementia: What Do We Know? 1. The Epidemiology of Dementia in People with Intellectual Disabilities. Amanda Sinai, Clinical Research Associate, Faculty of Brain Sciences, University College London, UK, Trevor Chan, Consultant Psychiatrist in Learning Disability, Oxleas NHS Foundation Trust, London, UK and Andrew Strydom, Senior Lecturer, Faculty of Brain Sciences, University College London, UK. 2. Understanding the Process: Links Between Down's Syndrome and Dementia. Liam Reese Wilson, Research Assistant and PhD Student, Cambridge Intellectual and Developmental Disabilities Research Group, University of Cambridge, UK, Tiina Annus, PhD Candidate and Research Assistant, Cambridge Intellectual and Developmental Disabilities Research Group, University of Cambridge, UK, Shahid Zaman, Consultant Psychiatrist, Cambridgeshire and Peterborough NHS Foundation Trust and Affiliated Lecturer, Department of Psychiatry, University of Cambridge, UK and Anthony J. Holland, Health Foundation Chair in the Psychiatry of Learning Disabilities, University of Cambridge, UK and Honorary Consultant Psychiatrist, Cambridgeshire and Peterborough NHS Foundation Trust. 3. The Outpatient Clinic for Adults with Down's Syndrome: A Model to Diagnose Dementia. Antonia Coppus, Erasmus University, Rotterdam, the Netherlands. 4. Medication Treatment of Dementia in People with Intellectual Disabilities. Ken Courtenay, Consultant Psychiatrist, London, UK and Nicole Eady, completing MSc in Psychiatric Research at University College London, UK. 5. Non-Pharmacological Interventions. Nancy Jokinen, School of Social Work, University of Northern British Columbia, Canada and Co-President of the British Columbia Psychogeriatric Association. 6. Living Life with Dementia. Sunny Kalsy-Lillico, Consultant Clinical Psychologist, Birmingham Community Healthcare Trust, UK. Part II: Experiences of Dementia in People with Intellectual Disabilities: How Do We Know? 7. The Perspective of People with Intellectual Disabilities. Noelle Blackman, Dramatherapist, Chief Executive Office of Respond and Honorary Fellow, University of Hertfordshire, UK and David Thompson, Founder of Growing Older with Learning Disabilities (GOLD) group. 8. Towards Understanding Individual Experiences of People Ageing with Down's Syndrome and Dementia. Karen Watchman, Alzheimer Scotland Lecturer in Dementia, University of the West of Scotland, UK. 9. Family Experiences of Supporting a Person with Down's Syndrome and Dementia in Australia. Rachel Carling-Jenkins, Research Fellow, Intellectual Disability Research Group, LaTrobe University, Australia, Christine Bigby, Research Programme Leader and Deputy Chair Academic Board, LaTrobe University, Australia and Teresa Iacono, Professor of Rural and Regional Allied Health, LaTrobe University, Australia. 10. Planning Ahead: Supporting Families to Shape the Future After a Diagnosis of Dementia. Christine Towers, Research and Service Development Manager, Foundation for People with Learning Disabilities, UK and Heather Wilkinson, Co-Director, Centre for Research on Families and Relationships, Director of Research and Knowledge Exchange and Head of Interdisciplinary Social Science, University of Edinburgh, UK. Part III: Service Planning: What Are We Going to Do? Sharing the Diagnosis of Dementia: Breaking Bad News to People with an Intellectual Disability. Irene Tuffrey-Wijne, Senior Research Fellow, St George's University of London, UK, Kingston University, UK and Maastricht University, the Netherlands and Karen Watchman, Alzheimer Scotland Lecturer in Dementia, University of the West of Scotland, UK. 12. Staff Knowledge and Training. Karen Dodd, Associate Director, Specialist Therapies: Learning Disabilities and Older Peoples' Mental Health Services and Consultant Clinical Psychiatrist, Surrey and Borders Partnership NHS Foundation Trust, UK. 13. Belief in a Place Called Home: Reflections on Twenty Years of Dementia Specific Service Provision. Leslie Udell, Interim Executive Director, Winniserv Inc., Canada. 14. Responding to the Challenges of Service Development to Address Dementia Needs for People with an Intellectual Disability and their Caregivers. Mary McCarron, Dean of the Faculty of Health Sciences, Trinity College Dublin, Ireland, Philip McCallion, Professor, School of Social Welfare, University of Albany, USA, Evelyn Reilly, Lecturer in Specialist Nursing (Dementia and Learning Disability) Trinity College Dublin, Ireland and Niamh Mulryan, Acting Clinical Director, Daughters of Charity Intellectual Disability Services, Dublin, Ireland. 15. Intellectual Disability and Dementia Services: Better Together or Apart? Susan Mary Benbow, Director, Older Mind Matters Ltd., UK, Moni Grizzell, Nurse Practitioner, Research Sister, and Visiting Lecturer, University of Wolverhampton, UK and Andrew Griffiths, Consultant in Older Adult Psychiatry, Black Country Partnership NHS Foundation Trust, UK. 16. Measuring Outcomes for Services and Individuals. Karen Dodd, Associate Director, Specialist Therapies: Learning Disabilities and Older Peoples' Mental Health Services and Consultant Clinical Psychiatrist, Surrey and Borders Partnership NHS Foundation Trust, UK. References. List of Contributors. Index.

Editorial Reviews

This book brings together the most up to date information that is available internationally, in relation to dementia and intellectual disabilities... through exploring individual case studies and more importantly what can be done to help shape future services and the potential implications. The wealth of information presented within the book will help to inform and support services throughout the whole course of dementia, from first diagnosis to end of life... provides useful information and suggestions with regards to specific activities that could be utilised through the different stages of dementia, as well as providing techniques in which to improve communication.

NAPA, Living Life Magazine - George Dewis

As the contributors include internationally renowned experts the text provides excellent teaching material for practitioners, academics with reference to current practice and developments in this area. Dr Watchman's book is an essential tool for the health and social care sector... The current volume is an important contribution to the literature on intellectual disability and dementia... The comprehensive nature of the volume in terms of its aims and scope make this publication highly recommended reading not only to all those colleagues involved in the health and social care of persons with intellectual disability and dementia, but also for the families and friends of those who suffer with these conditions.

European Journal for Person Centered Healthcare - Dr Margot Lindsay

Dr. Watchman has assembled a wide-reaching compendium of chapters touching upon and contemporizing a range of issues prevalent in the conversation on dementia and how it affects people with intellectual disabilities. The authors are drawn from among the leaders, innovators, and researchers in the social care field and their contributions help to encapsulate the 'state of the art' in this vexing area and will help us move to the next level in research and practice. A very commendable effort and a book that belongs in the hands of anyone concerned about how to best approach dementia among people with intellectual disabilities.

Matthew P. Janicki

Karen Watchman has managed to bring together internationally renowned experts whose contributions are an intellectual tour de force from presenting the scientific evidence to making recommendations. This is a must read for anyone interested in changing perceptions, practice or policy for people living with intellectual disabilities and dementia.

Jean Georges

Intellectual Disability and Dementia is a must read for everyone working with people with intellectual disabilities who have a diagnosis of dementia. It provides a wealth of information and is a very welcome contribution in this field of work. Karen Watchman (...) has experience of supporting people within both dementia care and intellectual disability services... This book offers the latest information, international research and evidence-based practice with contributors from the UK, Holland, Ireland, Canada, Australia and the US.

Signpost - Jayne Phillips