Appendix 1: Acknowledgements
2016: Ethical issues linked to the changing definitions/use of terms related to Alzheimer’s disease
Alzheimer Europe would like to express its sincere thanks to the members of the ethics working group who donated their time, energy and expertise to make it possible to produce this discussion paper. In the table below, you will find a bit of background information about the members of the group (in alphabetic order).
Hilary Doxford, at the age of 53, was diagnosed with early onset Alzheimer's disease. She was appointed to the World Dementia Council in 2015, is Vice-Chair of the European Working Group of People with Dementia and an ambassador for the Alzheimer’s Society in England. Speaking nationally and internationally as a person living with dementia, she participates in research studies, champions ‘Join Dementia Research’ and is contributing to the setting up of a working group of people with dementia in England and Wales.
Karine Fauria is the Scientific Manager of Barcelonaβeta Brain Research Center (BBRC), research institute of the Pasqual Maragall Foundation. The BBRC is devoted to research in Alzheimer’s prevention. Karine started her scientific carreer in cognitive neuroscience and was awarded a PhD in visual orientation in 1998. She started to work at BBRC as part of the team which designed and managed the ALFA study, BBRC flagship project. ALFA study is a longitudinal cohort of sons and daughters of AD patients, developed to explore the preclinical stage of this condition with the aim of identifying novel risk factors and biomarkers.
Jean Georges has been the Executive Director of Alzheimer Europe since 1996. Prior to this, he worked as a journalist and as a parliamentary assistant to members of the Luxembourg and European Parliament. He was responsible for setting up the European Dementia Ethics Network in 2008 and has since contributed towards several ethics projects in that context.
Dianne Gove is Director for Projects at Alzheimer Europe. She is also Chair of Alzheimer Europe’s Ethics Working Group. Her background is in psychology, education and psychotherapy (analytical Gestalt therapy). In 2013, she was awarded a PhD from the University of Bradford for her research into general practitioners’ perceptions of dementia and how these relate to stigma. She has directed several projects focusing on issues such as legal rights, assistive technology, palliative care, advance directives, social support and continence care.
Julian C. Hughes is RICE Professor of Old Age Psychiatry in the University of Bristol. He is based at the Research Institute for the Care of Older People – the RICE Centre – in Bath and is an honorary consultant at the Royal United Hospital in Bath. Julian’s areas of expertise are in the fields of Ethics and Philosophy in connection with dementia and ageing. He also has an interest in palliative care. Julian has served on a number of national and international committees. He is a Fellow of the Royal College of Psychiatrists and of the Royal College of Physicians of Edinburgh. He is currently a member and Deputy Chair of the Nuffield Council on Bioethics.
Tina Leonard is Head of Advocacy & Public Affairs at the Alzheimer Society of Ireland where she works on the development of communications, advocacy, public affairs, policy and research programmes. An experienced advocate, Tina has previously worked as a consumer journalist, author, media commentator and communications consultant and was previously Director of Ireland’s European Consumer Centre.
Anneli Sarvimäki was Director of the Age Institute in Helsinki, Finland, for ten years and is now associated as expert with the institute. She has a doctoral degree in educational sciences and philosophy. She is also a registered nurse specialised in psychiatric nursing. Her main interests as a researcher and teacher are ethics in health care, experiential ageing, and ageing and the quality of life. Anneli Sarvimäki has directed several research projects and published articles and books on these topics.
Dr Sarah Smith is a Cognitive Psychologist and Senior Lecturer in the School of Dementia Studies at the University of Bradford. Her research interests concern how higher order cognitive processes, awareness of memory and subjective experiences associated with remembering, interact with memory function. She is particularly interested in understanding everyday memory deficits in people with less common forms of dementia. Her research has sought to understand how memory operates in the context of carrying out everyday tasks and remembering past personal events, establishing the significance for significance for maintaining identity and engaging in cognitive rehabilitation.
Dr. Mark Schweda is research associate at the Department of Medical Ethics and History of Medicine (University Medical Center Göttingen) and junior research fellow for the ethics of living at the Lichtenberg-Kolleg Göttingen. His academic background is in philosophy and German literature. His research focuses on the philosophical, (bio-)ethical, and socio-cultural aspects of ageing and the human life course. Recent publications are concerned with representations of dementia in popular culture, as well as with the role of modern biomedicine for public perceptions of ageing and the life course.
Hinesh Topiwala is a Clinical Research Fellow at the Centre for Dementia Prevention, University of Edinburgh. He works on the European Prevention of Alzheimer’s Dementia (EPAD) Longitudinal Cohort Study. His main research interest is lifestyle and neurodegeneration in midlife. He completed Psychology (BSc) and Medicine (MBBS) degrees at University College London. He is member of the Royal College of Psychiatrists (MRCPsych) and sees patients in the NHS Young Onset Dementia Clinic, Fife, Scotland.
Guy A.M. Widdershoven is Professor of Philosophy and Ethics of Medicine, Head of the Department of Medical Humanities and senior researcher at the EMGO Institute for Health and Care Research of VU University Medical Center, Amsterdam. He has published on hermeneutic ethics and its application in empirical ethics, moral deliberation and ethics of chronic care. His research interests include autonomy in chronic care, coercion in psychiatry, evaluation of moral deliberation projects, end-of-life issues, genetics and public health genomics.
Last Updated: Friday 10 February 2017