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Appendix 1 – Details of the members of the expert working group

2020 Ethical issues linked to legal capacity and decision making (full report)

Dianne Gove, PhD, is Director for Projects at Alzheimer Europe and Honorary Visiting Research Fellow at the University of Bradford. She was Chair of the working group addressing ethical issues related to legal capacity. Her background is in psychology, education (focus on disability and gender) and psychotherapy. In 2013, she was awarded a PhD for her research into general practitioners’ perceptions of dementia and how these relate to stigma. Her current work focuses mainly on promoting Public Involvement in research projects and on addressing ethical issues in various research projects in which Alzheimer Europe is involved.

Carmel Geoghegan became the primary carer for her Mum in Manuary 2011 and supported her to the end of life in January 2014. Since this life changing experience, Carmel has been campaigning to keep the spotlight on dementia and end-of-life care as a national health priority in rural Ireland. Carmel has successfully organised two conferences on ‘Living with dementia in  rural Ireland’, which brought together experts from all sections to work together to help feed into policy and practice at national level. Carmel was also a member of Alzheimer Europe’s ethics working group on dementia and disability.

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 (e.g. on the use of assistive technology for and by people with dementia, disability, inclusive research and intercultural care and support).

Dr Alistair Niemeijer (PhD) is Assistant Professor in Care Ethics at the University of Humanistic Studies, Utrecht in the Netherlands. His line of research focuses on precarious practices of care and well-being of and for the (chronically) vulnerable by exploring different methodologies in order to answer the question how to best understand and communicate lived experiences of those whose voices have formerly been mising

Jim Pearson is Alzheimer Scotland's Director of Policy & Research and is responsible for Alzheimer Scotland's public policy engagement. He has a background in welfare rights and a particular interest in promoting as well as protecting the rights of people living with dementia. He played a significant role in developing Scotland's Charter of Rights for people with dementia and their carers, which puts human and other legal rights at the heart of each commitment of Scotland's first and second dementia strategies. Jim has an MBA from Glasgow Caledonian University and joined the Board of Alzheimer Europe in 2014.

Dr Catherine Quinn is a lecturer in dementia studies at the Centre for Applied Dementia Studies at the University of Bradford where she teaches about post-diagnostic support. Catherine’s research focuses on how we can better support people living with dementia and their carers, both through gaining a better understanding of what enables people to ‘live well’ and through the development of psychosocial interventions.  Catherine also has an interest in relationship dynamics and positive experiences in providing care.

Sebastian Ritzi studied Care and Philosophy for the teaching qualification in vocational schools and the upper secondary level of education at Heidelberg University. He is a nursing specialist in geriatric-psychiatric nursing and looks back on several years of professional nursing experience in Germany and Switzerland. He is a member at the graduate program "People with Dementia in Acute Care Hospitals'' funded by the Robert Bosch Foundation at the Network Aging Research (NAR) as well as a research associate, teacher, and course coordinator at the Institute of Gerontology at Heidelberg University. In the context of his doctoral thesis and research, he mainly concentrates on the ethical issues of the use of (physical) restraints in people with dementia.

Helen Rochford-Brennan is from Tubbercurry in County Sligo, Ireland. Helen spent many years working in the tourism and disability sectors and has also devoted tireless years to community activism, working at board level in several organisations. In July 2012, Helen was diagnosed with early onset Alzheimer's disease. She has been Chair of the Irish Dementia Working Group and is a member of the EWGPWD for which she was Vice Chair and then Chair from October 2014 until 2020. She uses her time to raise awareness of dementia and raise the profile of human rights for people with dementia. In 2018, Helen was conferred with an Honorary Doctor of Laws at NUI Galway.

Matthé Scholten has a Ph.D. in Philosophy from the University of Amsterdam and works as a researcher at the Institute for Medical Ethics and History of Medicine of the Ruhr University Bochum in Germany. His research interests include competence to consent, substitute decision-making and supported decision-making. He is co-coordinator of SALUS, a large interdisciplinary project on the reduction of coercion in psychiatry, and principal investigator for the projects HumanMeD and EQUALISE. He served as a member of the expert and author group of the German clinical guideline “Informed consent to medical treatment for persons with dementia” and works on a manual for competence assessment and supported decision-making in people with dementia.

Maria Do Rosário Zincke Dos Reis was born in Lisbon and has a Law Degree from the Lisbon Law Faculty (1985). She has worked since 1987 as a lawyer especially dedicated to the rights of people with diminished capacity. She is a trainer on the legal rights of people with diminished capacity, a Board member of Alzheimer Portugal and of Alzheimer Europe. She has also been a member of CEIC - Ethical Committee for Scientific Research (since 2017) and she has been a member of the Strategic Committee at the Lisbon Faculty of Pharmacy since 2019.



Last Updated: Monday 08 March 2021