Advance care planning in dementia: conceptualisation and recommendations for practice, policy and research


To conceptualise advance care planning in dementia in terms of its definition, elements, and any differences with advance care planning in patients with other diseases who are expected to retain capacity. Further, based on evidence and consensus, to provide recommendations for optimal advance care planning in practice, for policy initiatives to promote advance care planning in dementia, and for areas that need research, and design issues.


Palliative care in dementia is different from palliative care in diseases in which patients usually retain capacity for decision making until a late stage. For example, with dementia, managing and anticipating an uncertain course of the disease, and preparing family caregivers for a central role in end-of-life decision making are essential. EAPC has issued white papers on palliative care in dementia (van der Steen et al 2014) which includes a domain on advance care planning, and a white paper on advance care planning which was limited to patients with decisional capacity (Rietjens et al 2017). These papers provide an important basis for a next step. There is clearly a need to synthesize the evidence and to provide guidance based on evidence and on consensus among important stakeholders. The leaders of the two previous relevant EAPC white papers join forces to build upon and expand their previous work to develop such guidance.

Activities and milestones


2019 team meetings to develop a set of recommendations and draft a study protocol for
a Delphi study and patient and public involvement, connecting with stakeholders from
various disciplines and various relevant expertise

2020 refine the study protocol for a Delphi study, launch of an online survey and interim
data analyses

2021 data interpretation and evaluation, synthesize, write up, and present results

2022 anticipated publication of an EAPC white paper on advance care planning in


Jenny T. van der Steen, PhD, Associate Professor

Leiden University Medical Center, Department of Public Health and Primary Care, Leiden, The Netherlands, and

Radboud university medical center,  Department of Primary and Community Care, Nijmegen, The Netherlands
click here to contact by email


Judith A.C. Rietjens, PhD, Associate Professor

Erasmus MC, Department of Public Health, Rotterdam, The Netherlands

Ida J. Korfage, PhD, Assistant Professor

Erasmus MC, Department of Public Health, Rotterdam, The Netherlands


Prof. Phil Larkin (Ireland, Switzerland)

Prof. Iva Holmerova (Czech Republic)

Dr. Kathryn Hyer (USA)

Prof. Ninoslav Mimica (Croatia)

Prof. Paola Di Giulio (Italy)

Prof. Lieve Van den Block (Belgium)

Prof. Jurgen in der Schmitten (Germany)

Dr. Karen Harrison Dening (UK)

Prof. Rebecca Sudore (USA)

Prof. Deborah Parker (Australia)

Dr. Miharu Nakanishi (Japan)

Dr Sandra Martins Pereira (Portugal) - EAPC Board link


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