2014: Ethical dilemmas faced by carers and people with dementia
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 report.
Stig Atle Aavik was born in Stockholm, Sweden of Norwegian parents. He studied at the Norwegian Army Academy and earned a Master’s degree from the Norwegian School of Business Administration. Stig has 3 children and is an avid cross-country skier. He was diagnosed with Alzheimer’s disease in May 2012. Later that year, he joined the European Working Group of People with Dementia and has since participated in European conferences and projects, and given speeches about his experience of dementia.
Dr Michael Dunn is a lecturer at the Ethox Centre, University of Oxford. At Ethox, he teaches medical ethics and law to medical students and he leads a programme of research focusing on the ethical dimensions of managing, organising and delivering community-based and long-term health and social care services.
Charlotte Emmett is a senior law lecturer at Northumbria University School of Law, UK and a (non-practising) solicitor. She lectures, researches and has published widely in mental health law and mental capacity law. Her current research examines how the law impacts on the care of older adults with dementia in hospital and community settings; the legal rights and responsibilities of key stakeholders in dementia care; and the State's role in the protection of vulnerable older adults and carers. Charlotte has participated in several research projects (e.g. with the Equality and Human Rights Commission).
Chris Gastmans, PhD, is Full Professor of Medical Ethics at the Catholic University of Leuven, Faculty of Medicine, Centre for Biomedical Ethics and Law, Belgium. His dissertation for his doctoral degree in theology was a critical study of the historical, anthropological and moral theological foundations of nursing ethics, conceptualised as an ethics of care. He teaches and carries out research in the field of end-of-life ethics, elderly care ethics, nursing ethics and empirical ethics. He is President of the European Association of Centres for Medical Ethics (EACME).
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.
Cees M.P.M. Hertogh is Professor of elderly care medicine & geriatric ethics at the department of General Practice & Elderly Care Medicine of the Vrije Universiteit Medical Center, Amsterdam. He is also an elderly care physician and chairs the research division on elderly care medicine and teaches at the medical faculty and the specialist training course for elderly care physicians (GERION). His research focuses on dementia, geriatric palliative care, geriatric rehabilitation and ethical issues in the care and treatment of vulnerable older people.
Ranveig Andrea Hoff lives in Norway, not far from Oslo. She was a PA for Managing Director in a consultant company for 22 years and is currently retired. Since 2012, Ranveig has been supporting her nephew, Stig, who has dementia and is a member of the European Working Group of People with Dementia. In her spare time, Ranveig enjoys culture such as reading, go to movies or theatre. She also does workout two to three days a week.
Julian Hughes is a consultant in psychiatry of old age at North Tyneside General Hospital and an honorary professor of philosophy of ageing at the Policy, Ethics and Life Sciences (PEALS) Research Centre at Newcastle University, UK. His research and writing are mainly about philosophical and ethical issues in connection with ageing and dementia. He has a particular interest in palliative care in dementia. His clinical work focuses both on care homes and on behaviour that people find challenging.
Louisa Jackman leads the Clinical Psychology Service in Northumbria Healthcare Trust’s Psychiatry of Old Age. She is also an Associate Clinical Lecturer at Newcastle University and a freelance trainer. She has extensive experience working with people with dementia and their families, and has written papers on making psychological understanding of people’s behaviour in the context of dementia accessible to non-psychologists. She has more recently been collaborating with clinical and academic colleagues to look at the psychological, ethical and legal factors involved in restrictive care practices.
Dr Ian James is Head of Newcastle Challenging Behaviour Team, and is a Clinical Psychologist at the Centre for the Health of the Elderly, Newcastle upon Tyne. He obtained his PhD from the University of Lancaster for his research into memory. He has been working with older people for 13 years. Ian has special interests in challenging behaviour and dementia, conceptualisation and competence in therapy. He also has a keen interest in cognitive therapy, interpersonal therapy and training.
Jana Kasparkova, MSc et BSc, RN, is a nurse and was Assistant Professor of Nursing at the Faculty of Medicine of Charles University in Pilsen for 10 years. She is currently a PhD student in the Faculty of Humanities of Charles University in Prague in the Applied Ethics programme and in the ICU of the Faculty/Teaching Hospital in Pilsen. She has a lengthy experience working in a hospital and her PhD thesis is on ethical dilemmas in the care of patients with Alzheimer’s disease.
Eila Okkonen has worked as a professional nurse in various Finnish hospitals and has been a Senior Lecturer at a nursing college, a project manager at the University of Applied Sciences and the Head of a centre for education. She is currently Executive Director and Editor-in-Chief at Muistiliitto. She has a Master’s Degree in Health Care and Teaching from the University of Helsinki, where she also obtained her PhD for her research into psychosocial risk factors, coping styles and subjective health of patients. She is also a member of The National Advisory Board on Social Welfare and Health Care Ethics, ETENE, 2014 – 2018.
Jan Oyebode is Professor of Dementia Care at the Bradford Dementia Group, University of Bradford and is an honorary clinical psychologist in Birmingham and Solihull Mental Health Foundation Trust. She has a longstanding interest in caregiving, including running carers’ groups, and writing about and researching caregiving. Her recent research has been about the impact of dementia on family relationships, including the impact on families, including young people, where a parent has young onset dementia; fronto-temporal dementia; cultural aspects; end of life and bereavement.
Federico Palermiti is Project Manager for AMPA Monaco (Monegasque Association for Research on Alzheimer's Disease). He is a lawyer, specialised in human rights and international law. In the last 15 years, has developed expertise in legal and ethical issues concerning people with dementia and their carers and has published several studies on these topics. He is a member of the scientific committee of the French Ethical Alzheimer Institute and the French Geriatric and Gerontological Society.
Anneli Sarvimäki 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 have been nursing ethics, experiential ageing, and ageing and the quality of life. Anneli Sarvimäki has published numerous articles and books on these themes and she is an appreciated lecturer among both health care professionals and pensioners.
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.
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: Monday 08 February 2016