Advance care planning in dementia: conceptualisation and recommendations for practice, policy and research
Aims
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.
Background
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.
Membership

Jenny T. van der Steen
Chair
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
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Judith A.C. Rietjens
Co-Chair
Associate Professor, Erasmus MC, Department of Public Health, Rotterdam, The Netherlands

Ida J. Korfage
Co-Chair
Assistant Professor, Erasmus MC, Department of Public Health, Rotterdam, The Netherlands
Members
- 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
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 dementia