European Association for Palliative Care

Advance care planning in dementia

Aims

To conceptualise advance care planning in dementia in terms of its definition, elements, and any differences with advance care planning (ACP) 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.

Mission Statement

We, as the EAPC task force for ACP in dementia, aim to improve ACP in dementia, to achieve the following goals:
1. to promote societies that address future care needs of people with dementia based upon what they and their families and supporters consider important;
2. to provide people with dementia with equitable opportunity and a voice to identify and articulate what is important to them in their lives and in their relationships with those around them;
3. to protect people with dementia, wherever possible, from non-preferred or otherwise inappropriate care and treatment.
4. to support the notion that human existence has meaning and people, irrespective of diagnosis or cognitive abilities, are worthy of time to prepare for the future;
5. to foster inclusiveness in making ACP available for all, with tailored approaches as needed by specific groups.

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
click here to contact by email

Ida J. Korfage

Co-Chair

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

Members
  • Prof. Judith A.C. Rietjens (Netherlands)
  • Prof. Phil Larkin (Ireland, Switzerland)
  • Prof. Iva Holmerova (Czech Republic)
  • 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

2021 launch of an online survey and interim data analyses **Read the blog about this here**

2021/2022 data interpretation and evaluation, synthesize, write up, and present results

2023 anticipated publication of an EAPC white paper on advance care planning in dementia