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Appendix 1 – Co-authors and contributors to this paper

2019: Overcoming ethical challenges affecting the involvement of people with dementia in research

Alzheimer Europe would like to thank the members of the expert working group who graciously donated their time and expertise, and drafted this report. Please find below a brief overview of their backgrounds.

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 inclusive research. 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.

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.

Mohammed Akhlak Rauf, MBE, is currently working through a PhD at the University of Bradford, where he is studying the coping strategies (manage transitions) of South Asian carers of a relative with dementia. He is the founder of the Meri Yaadain (My Memories) Community Interest Company, which seeks to raise awareness of dementia and facilitate culturally appropriate service provision amongst BAME communities. He was awarded an MBE in recognition of his work with people with dementia and their families.

Dr Jennifer R. van den Broeke is Senior Project Leader and Advisor Older persons and health at Pharos (national Centre of expertise on health disparities in the Netherlands). She leads projects in the field of care for older persons with low health literacy and/or migrant background and their informal caregivers. She is involved in several research projects and has experience in developing and offering training and tools for health and social care professionals, and testing materials and questionnaires amongst end users e.g. informal caregivers. She obtained her PhD at AMC-UvA with action research. The title of her thesis was ‘In need of a collaborative response. An analysis of collaboration between public health, primary care and social care in deprived neighbourhoods’.

Dr Karin Jongsma is a bioethicist with a particular interest in topics related to the ethics of decision-making, Patient and Public Involvement and digital health. She is Assistant Professor of Bioethics at the Julius Center of the University Medical Center Utrecht. Karin obtained her PhD in medical ethics based on her dissertation “Advance directives in dementia research – A medical ethical inquiry” from the Erasmus University Medical Center in 2016. Karin is a member of the Institutional Research Board of the University Medical Center Utrecht, teaches several courses at undergraduate, graduate and post-graduate level and currently supervises four PhD students working on the ethics of several emerging technologies.

Ann Claeys is a registered nurse (2003) and holds a Master’s Degree in Gerontology (2006). Ann Claeys’ nursing background is in care for older adults. She has experience working with older adults in intraand extramural care. Since 2010, Ann has been a lecturer and researcher for the Nursing Programme at the Erasmus University College in Brussels. She is currently also a PhD student at Vrije Universiteit Brussel, Belgium. Her PhD is on culture sensitive care of older migrants with dementia in Brussels.

Saloua Berdai Chaouni is a biomedical scientist and gerontologist. After years of field experience in developing projects of inclusion of ethnic minorities and consulting several organisations about inclusion and diversity management, she returned to research in 2015. As a PhD-student, affiliated to the Erasmus University College of Brussels and Vrije Universiteit Brussel, she conducts research about the experiences of dementia and care for older migrants with dementia in Belgium. Her other research work is situated at the intersection of ageing, migration and ethnic diversity; diversity management; disability and ethnic diversity; informal and formal care; qualitative research and decolonisation of research. She is also a lecturer at Karel De Grote University College in Antwerp.

Ingrid Hellström is Professor in Caring Sciences at Ersta Sköndal Bräcke University College, Stockholm, Sweden. She has a background in clinical gerontological nursing, and since 1995 especially in the care of people with dementia in a range of care settings. Ingrid is also working on the National Guidelines at the National Board of Health and Welfare in Sweden. Her main research interest is on people living with dementia and their families, especially working with couples living at home.

Dr Krista Tromp is a bioethicist with a special interest in research ethics. In 2019, she obtained her PhD in medical ethics with a dissertation concerning clinical trials with children (‘Between Protection and Participation: Moral promises and perils in pediatric clinical research’). She is a researcher and lecturer at the Department of Medical Ethics and Philosophy of Medicine of the Erasmus University Medical Center in Rotterdam, The Netherlands, where she is also a member of the research ethics committee. Her current research projects relate to the ethics of prevention trials and early diagnosis of Alzheimer’s disease and ethical aspects regarding the design of new cancer screening strategies. Since 2016, she has also been a policy advisor in ethics at the Royal Dutch Medical Association.

Dr Corinna Porteri is a researcher in Bioethics and is responsible for the Bioethics Service at the IRCCS Saint John of God Fatebenefratelli in Brescia, Italy. The Centre is a Scientific Institute for Research and Care of national relevance whose mission involves translational research in the rehabilitation of Alzheimer’s disease and mental disorders. She is involved in studies on the bioethical aspects related to care and research in people with psychiatric disorders and dementia, including the use of biomarkers for early diagnosis and the use of new technologies for rehabilitation. Corinna is the coordinator of the activities and Vice-president of the Ethics Committee of her institute that serves nine other health centres in the North of Italy. She holds a degree in philosophy with a thesis in logic and a PhD in bioethics.

Karen Watchman is Senior Lecturer in Ageing, Frailty and Dementia at the University of Stirling, Scotland where she leads the Enhancing Self-care research group in the Faculty of Health Sciences and Sport. With a focus on post-diagnostic support, intellectual disability and equality issues, she seeks diverse views of participants less often included in research. As a former Chief Executive Officer of Down’s Syndrome Scotland, she is an advocate of collaboration across all disciplines in dementia research with an emphasis on making research findings accessible. Karen was awarded her PhD on intellectual disability and dementia from the University of Edinburgh in 2013.

Alzheimer Europe would also like to thank the members of the European Working Group of People with Dementia who contributed to the selection of issues to be addressed, shared their perspectives of involvement in research, contributed personal testimonials and reviewed parts of the various drafts and the recommendations.

—  Idalina Aguiar

—  Stefan Eriksson

—  Tomaž Gržinič

—  Amela Hajric

—  Carol Hargreaves

—  Bernd Heise

—  Miha Kastelic

  Petri Lampinen

—  Thomas Maurer

—  Angela Pototschnigg

—  Chris Roberts (Vice Chair)

—  Helen Rochford-Brennan (Chair)

—  Geert van Laer

We would also like to thank the carers and supporters of the member of the EWGPWD.

EuropeanWorkingGroupof People with Dementia

Finally, Alzheimer Europe would like to thank experts who commented on various drafts of the text, either the whole text or sections of it which relate to their area of expertise.

—  Ana Diaz, PhD, Project Officer at Alzheimer Europe, Luxembourg

—  Emma Ferguson-Coleman, PhD, University of Manchester, Manchester Institute for Collaborative Research on Ageing, United Kingdom

—  Maria van den Muijsenbergh, MD, PhD, Pharos, Utrecht, the Netherlands






Last Updated: Wednesday 11 November 2020