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2017: Dementia as a disability? Implications for ethics, policy and practice

Alzheimer Europe would like to thank the members of the ethics working group who graciously donated their time and expertise, and drafted this discussion paper. Please find below a brief overview of their backgrounds (presented in alphabetic order).

Members of the ethics working group on dementia and disability

June Andrews (OBE, FRCN, RMN, RGN, MA, FCGI) is a psychiatric and general trained nurse and Professor Emeritus based in Scotland, specialising in the public understanding of dementia. She is a writer and broadcaster and works internationally as a consultant on service improvement. Her particular interest is in the care of frail older people in housing, hospitals and care.

Andrea Capstick, EdD is a Senior Lecturer in the Centre for Applied Dementia Studies, at the University of Bradford, UK, where she leads the MSc Dementia Studies programme. She has experience of carrying our participatory research with people who have dementia and of leading Patient and Public Involvement in a variety of dementia research studies. Her pre- viously published work focuses on the ethics of social inclusion for people with dementia, and creative methods for engaging people with dementia in social research.

Carmel Geoghegan became the primary carer for her Mum in January 2011 and supported her to 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. Her vision is that communities will be inclusive of all those living with a dementia diagnosis. Carmel has successfully organised two conferences on ‘Liv- ing with Dementia in Rural Ireland’, which brought together experts from all sections (e.g. people with dementia, GPs, academics etc.) to work together to help feed into policy and practice at a national level.

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 is Director for Projects at Alzheimer Europe and Honorary Visiting Research Fel- low at the University of Bradford. She is also Chair of the Ethics Working Group on Dementia and Disability. Her background is in psychology, education (focus on gender and disabil- ity) and psychotherapy (analytical Gestalt therapy). In 2013, she was awarded a PhD for her research into general practitioners’ perceptions of dementia and stigma.

Sébastien Libert is a PhD student based at University College London, and part of the Inter- disciplinary Network on Dementia Using Current Technologies (INDUCT). His research looks at the interaction between the use of technologies relating to dementia, and society’s rep- resentations of ageing, dementia, and cognitive decline. He developed his interest in health and society during his studies in Medical Anthropology and Sociology, mainly through his Masters degree at KUL, (Leuven, Belgium) and KU (Copenhagen, Denmark) and his Bache- lor’s degree at ULB (Brussels, Belgium).

Grainne McGettrick (BSc, MA) has spent her career working in field of disability and in demen- tia in the NGO sector. She has lead out on several national and international research and policy advocacy projects in the sector and has significant experience of working on rights- based agendas and community development for marginalised and disadvantaged people. She worked for more than ten years as the Policy and Research Manager with The Alzheimer Society of Ireland. In 2014, she moved to work with Acquired Brain Injury Ireland, where she is responsible for managing the policy and research functions.

Helen Rochford-Brennan is from Tubbercurry in County Sligo. Helen spent many years work- ing in the US and the UK before returning to Ireland to work in the tourism and disability sectors. Helen was diagnosed with Early Onset Alzheimer’s. She joined the European Work- ing Group of People with Dementia in October 2014. She recently stepped down as Chair of the Irish Dementia Working Group and is currently Chair of the EWGPWD and a member of the Board of Alzheimer Europe.

Helga Rohra is from Germany. She was a language interpreter and was diagnosed with Lewy Body dementia in 2008. She has been a member of the European Working Group since it started in 2012.

Simo Vehmas is Professor in the Department of Special Education at Stockholm Univer- sity, Sweden. He is specialised in various theoretical and ethical issues related to disability, especially in relation to intellectual disability. He is the principal investigator of an ongoing ethnographic research project Profound Intellectual and Multiple Disabilities and a Good Life, funded by the Academy of Finland.

Toby Williamson is an independent consultant working in the fields of adult and older peo- ple’s mental health, mental capacity and safeguarding, with a particular focus on dementia in the last 10 years. He has many years’ experience in frontline mental health services, research, evaluation, practice and service development, and policy work (both inside and outside gov- ernment). He has particular expertise in rights, values, social inclusion, empowerment and working with seldom heard groups. He has co-authored a book on mental health and men- tal capacity legislation and is currently co-authoring a book on rights, values and dementia.

Members of the European Working Group of People with Dementia and their carers/supporters

Alzheimer Europe would also like to thank the members of the European working group and their carers/supporters who, in the context of a one-day face-to-face consultation and email survey, provided feedback on a range of issues, and shared their thoughts and feelings about dementia as a disability with the ethics working group.

European Working group of People with Dementia

  • — Helen Rochford-Brennan (Ireland)
  • — Helga Rohra (Germany)
  • — Amela Hajrič (Bosnia Herzegovina)
  • — Idalina Aguiar (Portugal)
  • — Alv Orheim (Norway)
  • — Chris Roberts (United Kingdom)
  • — Nina Balačkova (Czech Republic)
  • — Karin Gustafsson (Sweden)
  • — Markku Parkkisenniemi (Finland)
  • — Carol Hargreaves (United Kingdom)

Carers/supporters of a member of the EWGPWD

  • — Samra Kučuk (Bosnia Herzegovina)
  • — Nelida Aguiar (Portugal)
  • — Berit Orheim (Norway)
  • — Jayne Goodrick (United Kingdom)
  • — Kveta Provinska (Czech Republic)
  • — Lars Gustafsson (Sweden)
  • — Sisko Kärki (Finland)
  • — Jayne Middleton (United Kingdom)

We would also like to thank our member associations for their help in verifying the accuracy of translated terms in Appendix and Dr Anna Mäki-Petäjä-Leinonen from the University of Helsinki for clarification regarding a particular legal issue.



Last Updated: Tuesday 13 February 2018


  • Acknowledgements

    The discussion paper “Dementia as a disability? Implications for ethics, policy and practice” received funding under an operating grant from the European Union’s Health Programme (2014–2020).
  • European Union