Intellectual Disability and Dementia

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.

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.