Advance decisions and dementia

This seminar will focus upon how advance decisions capable of implementation can be created and their role within the advance care planning context.

Welcome, opening remarks and introductions.


Dr Marike E. de Boer: “Advance directives in dementia care – from the perspective of people with dementia”

Followed by time for discussion and questions.

Coffee break.


Dr Arnd May: “Ethical perspectives on Advance Directives – Stability of patients wishes”

Followed by time for discussion and questions.



Round table discussion – discussion of preliminary research questions and sources of funding for a project considering the fit between legal, professional and user understandings of advance decision-making and to enhance the ability of individuals to plan effectively for times of incapacity.  Led by Professor Martin Eisemann (University of Tromsø) and Professor Jörg Richter (University of Hull).

Closing remarks.


Ethical perspectives on Advance Directives – Stability of patients wishes

Dr Arnd May

Advance directives are on the one hand binding legal instruments but on the other hand subject to the determination of whether the wishes of the patient has changed since the creation of the  advance directive. The acceptance of advance directives in Germany is still not outstanding. What could help to improve the validity? The examination of the advance directive by the guardian or surrogate remains a limitation of the instrument to prolong autonomy – or is it a chance?

Dr Arnd May

Arnd May received his PhD in Philosophy at the Ruhr-University Bochum. His PhD thesis was about advance directives and durable power of attorney and he has published extensively in these fields. His latest publication is May A, Kreß H, Verrel T, Wagner T (eds) Patientenverfügungen. Handbuch für Berater, Ärzte und Betreuer(Advance directives. Handbook for advisers, doctors and guardians), Heidelberg: Springer 2016.

Arnd’s contribution to the field of advance decision-making has been extensive and varied. He worked at the RWTH Aachen University and established clinical ethics consultation at the University hospital in Aachen (Uniklinik RWTH Aachen). In a working group for the German Federal Ministry of Justice (Patientenautonomie am Lebensende – patient autonomy at the end of life) he helped to develop the foundations of legislation enacted in 2009 giving effect to advance decisions. At the University Hospital in Halle (Saale) he developed the clinical ethics consultation service to an 24/7 service and established a training program for members of the Healthcare ethics committee. He leads the Centre for Applied Ethics in Erfurt ( – Zentrum für Angewandte Ethik).

Advance directives in dementia care – from the perspective of people with dementia

Dr Marike E. de Boer

The moral power of advance directives AD’s is derived from the principle of respect for the patient’s (precedent) autonomy. Around the globe, AD’s are thought to be beneficial with regard to end-of-life issues. In the context of dementia, timely engagement in advance care planning (ACP), including composing AD’s is considered important, in order for patients to exercise their right to self-determination and to extend their autonomy into a future of decision-making incapacity. However, engagement in ACP and the completion of AD’s in people with dementia remains limited. How can we understand this paradox whereby ACP AD’s are arguably beneficial yet underused, from the perspective of people with dementia? This presentation will provide insight into the thoughts of people with dementia with regard to the future, their receptiveness to plan ahead and the ‘limited window’ they have to make advance decisions. In addition, the issue of validity and effectiveness of advance directives in dementia care will be discussed. A diagnosis of dementia is a complicating factor when it comes to compliance with AD’s. People with dementia differ from other incompetent patients, e.g. comatose patients, in the sense that as a result of their disease their competence is gradually diminishing. Also, even though people with dementia may (rightly) be labelled as incompetent, they remain alert, involved in their situation and they continue to have wishes and are able to interact with their environment. As a result, a situation may arise in which the current wishes of the person with dementia (expressed in words or behaviour) conflict with their former preferences as formulated in the AD. This dilemma will be illustrated with some examples form empirical research. Understanding these issues is crucial for policy makers, health care providers and researches for making future steps towards interventions aiming at an increase of ACP among people with dementia.

Dr Marike E. de Boer

Marike is a post-doc researcher at the VU University Medical Center, Department of General Practice & Elderly Care Medicine.



Marion Albers

Lehrstuhl für Öffentliches Recht, Informations- und Kommunikationsrecht, Gesundheitsrecht und Rechtstheorie, Fakultät für Rechtswissenschaft, Universität Hamburg

Jacqueline Atkinson

Professor of Mental Health Policy at the University of Glasgow

Peter Bartlett

Nottinghamshire Healthcare NHS Trust Professor of Mental Health Law, University of Nottingham

Marike de Boer

Researcher, EMGO Institute for Health and Care Research, VU University Medical Center.

Louise Bramley

PhD student, University of Nottingham

Sharon Burton

GMC Head of Policy, Standards and Ethics

Martin Eisemann

Professor of Psychology University of Tromsø

Chris Gastmans

Professor of Medical Ethics President, European Association of Centres of Medical Ethics KU Leuven

Samantha Halliday

Associate Professor of Law, University of Leeds

Gillian Hundt

Professor of Social Science in Health, University of Warwick

Kirstin Jalink

PhD student, VU University Medical Center

Arnd May

Zentrum für Angewandte Ethik

Alex Pearl

PhD student, School of Law, University of Leeds

Andrea Prescott

Court of Protection and Community Care Solicitor Cartwright King Solicitors, Leeds.

Jörg Richter

Professor of psychology, Universität Rostock, SL University of Hull

Kevin de Sabbata

PhD student, School of Law, University of Leeds

Sander Welie

Lawyer, Dutch National Foundation of Patient Advocates in Mental Health Care