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Acknowledgements

2015: Ethical dilemmas faced by professionals providing dementia care in care homes and hospitals

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 publication. Please find below, in alphabetic order, details about their respective backgrounds and a photo of each person. This was a very dynamic working group and this publication is the result of a great deal of reflection and discussion between all members of the group.

Professor June Andrews FRCN is Director of the Dementia Services Development Centre at the University of Stirling. She is a Fellow of the Royal College of Nursing and has received a Lifetime Achievement Award from the Chief Nursing Officers of the UK.  She has also been recognised with the prestigious Robert Tiffany International Award and the Founders Award of the British American Project.  She headed the Royal College of Nursing in Scotland, and directed the Centre for Change and Innovation within the Scottish Government in addition to her career in the NHS. She advises health departments and service providers around the world and is author of Dementia; the One-Stop Guide.

Lydie Diederich  (MA) joined the Alzheimer Association of Luxembourg (ALA) in 2000 after having obtained her diploma as a graduated educator in Liege. From 2000 to 2005, she was in charge of a day-care centre for people with dementia. In 2005, she obtained a Masters in Gerontology from the University of Luxembourg. From 2005 to 2007, she prepared and coordinated the opening of the specialised nursing home “Beim Goldknapp” in Erpeldange where, since its opening in 2007, she has been the Director. Then, in 2010, she became a member of the board of directors of ALA.

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 Past President of the European Association of Centres for Medical Ethics (EACME).

Debby Gerritsen, PhD, is leader of the ‘Mental Health’ research program at the Department of Primary and Community Care of the Radboud University Medical Center in Nijmegen, the Netherlands. Her research regards frail elderly people with and without dementia receiving long-term care. She focuses on their quality of life, mental health and the measurement of patient outcomes in long-term care. The topic of her PhD thesis was QoL and its measurement in nursing homes, which has resulted in several international peer reviewed publications. She is a member of Interdem, a pan-European research group on detection and timely INTERvention in DEMentia.

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, PhD, 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 (e.g. focusing on legal rights, assistive technology, palliative care, advance directives, social support and continence care).

Fabrice Gzil, PhD, is research programme manager at Fondation Médéric Alzheimer in Paris, France. He is also the coordinator of Social Sciences for Dementia, a pluridisciplinary research network for ageing citizens with cognitive disabilities. His PhD thesis entitled “La maladie d’Alzheimer: Problèmes philosophiques”) was about the early history of dementia, the epistemology of animal models of Alzheimer’s disease and the ethics of dementia care. His current work aims to promote within society a culture of dementia focused on human rights and dignity.

Agnes Houston was diagnosed with early onset Alzheimer's dementia in 2006 at the age of 57. She is an active member of the Scottish Dementia Working Group. In 2012, she was elected Vice Chair of the European Working Group of People With Dementia and is also a board member of the newly formed Dementia Alliance International. She has campaigned for best practice and improving the lives of people with dementia, especially regarding sensory issues and dementia in Scotland and received a lifetime achievement award by Alzheimer Scotland in 2013. In 2015, she was awarded an MBE.

Dana Hradcová is a managing director at the Centre of Expertise in Longevity and Long-term Care at Faculty of Humanities at Charles University in Prague. Her dissertation in applied ethics was an ethnographical study of relations in which care is shaped in nursing homes for people with dementia in the Czech Republic. She works as a consultant for the Czech Alzheimer Society and carries out research in the field of long-term care for people with dementia and people with learning disabilities.

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. He is currently deputy chair of the Nuffield Council on Bioethics.

Caroline Kilty, PhD, is a Module Leader on a course entitled “Contemporary Perspectives in Dementia across the continuum of care”, on a post grad Gerontology programme at University College Cork (Ireland). Caroline has worked at the Alzheimer Society of Ireland for 8 years, as Nurse Manager.  Caroline completed her PhD in the area of early onset dementia, and works as a Post-doctoral researcher at UCC.

Denis Mancini (MA) has been working for the Alzheimer Association of Luxembourg (ALA) since 1996. He was in charge of a day-care centre for people with dementia for ten years and coordinated six day-care centres for two years. Then, in 2010, he became the Director of Outpatient Services of ALA where he is currently responsible for the conceptualization and implementation of quality care. Initially trained as an educator, in 2015 he obtained a Masters in Gerontology from the University of Luxembourg with a focus on dementia and coaching.

Alistair Niemeijer (PhD) studied philosophy at VU University in Amsterdam and Applied Ethics at Utrecht University. He conducted his PhD research at the department of Elderly Care Medicine at VU University Medical Center. Currently, he works as an assistant professor in care ethics at the University of Humanistic Studies in Utrecht and as a postdoc researcher at the department of Social Medicine at VU University Medical Center, where he coordinates a qualitative research project on reducing restraints in residential care.

Lucília Nóbrega, Master’s degree in Health Psychology, from the Psychology and Science Education Faculty of University of Porto, collaborates with Alzheimer’s Portugal (Delegation of Madeira), promoting several activities with people living with dementia, in group and individually,  and caregivers, training and support groups. She also collaborates with some nursing homes, promoting several activities with older people and training to care workers and professionals.

Eila Okkonen, PhD, 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 Masters 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.

Jan Oyebode, PhD, 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 research has included studies of the morale and training needs of staff looking after people with advanced dementia in hospital wards; and she also has an interest in end of life and bereavement research.

Natalie Rigaux (PhD) is Professor of Sociology at the University of Namur (Belgium). She has focused for many years on dementia: first, providing an epistemological critique of the medical discourse on dementia, then through an observation of professional practices in a specialised nursing home and now conducting an ethnographical observation of the life of people with dementia living at home with the help of their family and professionals. Her main perspective is that of moral and political sociology.

The vignettes (short stories/cases) and commentaries were written by the following members of the working group and further developed through discussion between all members of this group. Our aim, in involving experts in ethics, dementia, professional dementia care and living with dementia in this process, was to help ensure that the vignettes reflect realistic situations and that the commentaries are informative and meaningful to readers.

Title of short story/case

Author of short story

Author of commentary

Mrs Grey

Debby Gerritsen

 

The two sisters

Dianne Gove

 

Mrs Brown and Mr Green

June Andrews

Chris Gastmans

Angela and life in the nursing home

Lucília Nóbrega

Julian Hughes

Joyce and her co-residents

Lucília Nóbrega

Lucília Nóbrega

Mr Smith and his family

Lydie Diederich and

Denis Mancini

June Andrews

George and his cat

Dianne Gove

Fabrice Gzil

Staff Nurse Pickard

Julian Hughes

Alistair Neimeijer

Appendix 2 was written by Julian Hughes and Lucília Nóbrega.

Alzheimer Europe would also like to express its sincere gratitude to the health and social care professionals who provided independent reviews in the form of detailed feedback on the penultimate draft of this document. This contributed towards the validation of the groups work and also consisted of constructive advice concerning several issues which we subsequently amended.   The independent review included (in alphabetic order):

  • Aileen Beatty, from the United Kingdom, was formerly Lead Clinician of the Behaviour Support Service for people with dementia in North Tyneside and now works for the Care Quality Commission.
  • Patrícia Castro, from Portugal, is a social worker at the Alzheimer Association’s Delegation of Madeira.
  • Deolinda Fernandes, from Portugal, is a nurse who works in a nursing home.
  • Gonçalo Fernandes, from Portugal, is a psychologist at the Alzheimer Association’s Delegation of Madeira.
  • Roland Mbe Ngang, Geronom, from Finland, is a geronom and works at the Uudenmaan Seniorikodit Oy (Nursing Home for Seniors), Villa Lauriina in Espoo.

 

 
 

Last Updated: Thursday 26 November 2015

 

 
 

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