Consensus definition of advance care planning in dementia: a 33-country Delphi study

Steen, J.T. van der; Nakanishi, M.; Block, L. van den; Giulio, P. di; Gonella, S.; Schmitten, J.I.D.; ... ; European Assoc Palliat Care EAPC (2023)

Article / Letter to editor

INTRODUCTION

Existing advance care planning (ACP) definitional frameworks apply to individuals with decision-making capacity. We aimed to conceptualize ACP for dementia in terms of its definition and issues that deserve particular attention.

METHODS

Delphi study with phases: (A) adaptation of a generic ACP framework by a task force of the European Association for Palliative Care (EAPC); (B) four online surveys by 107 experts from 33 countries, September 2021 to June 2022; (C) approval by the EAPC board.

RESULTS

ACP in dementia was defined as a communication process adapted to the person's capacity, which includes, and is continued with, family if available. We identified pragmatic boundaries regarding participation and time (i.e., current or end-of-life care). Three interrelated issues that deserve particular attention were capacity, family, and engagement and communication.

DISCUSSION

A communication and relationship-centered definitional framework of ACP in dementia evolved through international consensus supporting inclusiveness of persons with dementia and their family.

• advance care planning
• conceptualization
• decision-making
• dementia
• palliative care

• All authors: Steen, J.T. van der; Nakanishi, M.; Block, L. van den; Giulio, P. di; Gonella, S.; Schmitten, J.I.D.; Sudore, R.L.; Dening, K.H.; Parker, D.; Mimica, N.; Holmerova, I.; Larkin, P.; Pereira, S.M.; Rietjens, J.A.C.; Korfage, I.J.; European Assoc Palliat Care EAPC
• Date: 2023-11-20
• Journal: Alzheimer's & Dementia: The Journal of the Alzheimer's Association
• Volume: 20
• Issue: 2
• Pages: 1309 - 1320
• DOI: doi:10.1002/alz.13526
• Link: https://alz-journals.onlinelibrary.wiley.com/doi/10.1002/alz.13526