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Appendix 1

2013: The ethical issues linked to the perceptions and portrayal of dementia and people with dementia

Details of the working group

Dianne Gove, PhD, is Director for Projects at Alzheimer Europe and Chair of the Working Group on the Perceptions and Portrayal of Dementia. She has directed several projects in the field of dementia related to ethical issues, legislation, assistive technology and care and recently obtained a PhD for her research into the stigma of dementia. Prior to this she obtained a BSc Honours degree in Psychology and MAs in Psychoanalysis and Education before training in analytical Gestalt therapy.

Daphne Wallace, MB ChB FRCPsych DPM Dip.Psychother, studied Medicine at the University of St Andrews and specialised in Psychiatry. She is a member of the European Working Group of People with Dementia, which was set up in 2012 by Alzheimer Europe. Since her diagnosis with vascular dementia, she has campaigned for the rights of people with dementia and has been involved in research projects related to the rights and care of people with dementia. She was also a Trustee of Alzheimer’s Society UK for 12 years and is now an Ambassador for the Society.

Debby L. Gerritsen, PhD, is psychogerontologist and senior researcher at the Department of Primary and Community Care of the Radboud University Medical Centre, Nijmegen, in the Netherlands. Her research interests include quality of life, mental health and psychosocial interventions for people with dementia and long-term care residents. She is a member of Interdem, a pan‐European research group on detection and timely INTERvention in DEMentia.

Bénédicte Gombault is a project manager at the King Baudouin Foundation in Belgium and senior project manager for the projects on dementia. She has a special interest in the legal and ethical aspects related to Alzheimer’s disease and in the communication and the social representations of dementia. She has contributed to various projects and publications of the KBF about dementia and was member of the Executive board for the ALCOVE joint action (Alzheimer Cooperative Valuation in Europe).

Fabrice Gzil, PhD in Philosophy, Université Paris Panthéon-Sorbonne, 2007) is programme manager at Fondation Médéric Alzheimer (Paris, France), a non-profit organization committed to helping people with dementia and their carers through the support given to selected innovative projects and social science research, as well as national and international watchdog activities. His research focuses on the promotion of the autonomy and dignity of people with dementia. A chapter of his recent book "La maladie du temps"addresses the status of dementia and Alzheimer’s disease in society.

Jana Kasparkova 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. Her research is focused on ethical dilemmas in the care of patients with Alzheimer’s disease.     

Jan R Oyebode, M Psychol. (Clinical), PhD, is professor of dementia care in the Bradford Dementia Group, University of Bradford, UK. She is a clinical psychologist who has worked in the British National Health Service with people with dementia for many years, as well as researching. Her research interests include the subjective experience of dementia in the family, especially in relation to young onset dementia and the cultural context.

Sirpa Pietikäinen, MSc in Business from the Helsinki School of Economics, is a Finnish member of the European People's Party (EPP) in the European Parliament where she is the first Vice-Chair of the Internal Market and Consumer Protection Committee, and substitute Member in the Economic and Monetary Affairs Committee and the Women’s Right and Gender Equality Committee. She is a member of the Alzheimer Europe Board, as well as Vice-President of the Council to the Finnish Memory organisation and lectures at university on negotiations theory and practices.

Christine E. Swane, PhD in Cultural Gerontology, University of Copenhagen, 1996, is Director and responsible for research at the foundation EGV which targets research and projects concerning older people’s social life. She has published many books, reports and articles, primarily in Danish, about everyday life with dementia and cultural perspectives including stigma and perceptions, and special care and day care facilities.

Aino Valtanen, MSc in Political Science, is working as parliamentary assistant to the Member of the European Parliament, Sirpa Pietikäinen. She has worked since 2010 and focuses mainly on social and health policies, including ageing policies.

Baldwin Van Gorp, PhD in Political and Social Sciences, U of Antwerp, 2004, is an associate professor of journalism and communications management at the Institute for Media Studies of KU Leuven, Belgium. His research interests include the framing concept, journalism ethics and representation. He previously published studies on the framing of the elderly and the framing of dementia.

Richard Wallace was a student at Oxford University. Having lectured in philosophy for some years, he then trained for ordination in the Church of England. For 5 years, he was Chaplain at Bradford University and then in Parish work in the Diocese of Bradford. He is now retired. Richard has some experience of being a befriending visitor for the Alzheimer's Society. He was previously a carer for his mother who had dementia and now helps Daphne.

 

 
 

Last Updated: Friday 29 August 2014

 

 
  • Acknowledgements

    The above information was published in the 2013 Report "The ethical issues linked to the perceptions and portrayal of dementia and people with dementia" as part of Alzheimer Europe's 2013 Work Plan which received funding from the European Union in the framework of the Health Programme. Alzheimer Europe gratefully acknowledges the support it has received from Fondation Médéric Alzheimer Europe for the development and publication of this report.
  • European Union
  • Fondation Médéric Alzheimer
 
 

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