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

European Association for Palliative Care; Sandra Martins Pereira

doi:10.1002/alz.13526

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

European Association for Palliative Care
, Sandra Martins Pereira

Research output: Contribution to journal › Article › peer-review

72 Citations (Scopus)

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Abstract

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.

Original language	English
Pages (from-to)	1309-1320
Number of pages	12
Journal	Alzheimer's and Dementia
Volume	20
Issue number	2
DOIs	https://doi.org/10.1002/alz.13526
Publication status	Published - Feb 2024

UN SDGs

This output contributes to the following UN Sustainable Development Goals (SDGs)

SDG 3 Good Health and Well-being
SDG 10 Reduced Inequalities
SDG 16 Peace, Justice and Strong Institutions
SDG 17 Partnerships for the Goals

Keywords

Advance care planning
Conceptualization
Decision-making
Dementia
Palliative care

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10.1002/alz.13526Licence: CC BY-NC-ND

72706965Final published version, 745 KBLicence: CC BY-NC-ND

http://hdl.handle.net/10400.14/44103Licence: CC BY-NC-ND

Cite this

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title = "Consensus definition of advance care planning in dementia: a 33-country Delphi study",

abstract = "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.",

keywords = "Advance care planning, Conceptualization, Decision-making, Dementia, Palliative care",

author = "\{European Association for Palliative Care\} and Steen, \{Jenny T. van der\} and Miharu Nakanishi and \{Van den Block\}, Lieve and \{Di Giulio\}, Paola and Silvia Gonella and \{in der Schmitten\}, J{\"u}rgen and Rebecca Sudore and \{Harrison Dening\}, Karen and Deborah Parker and Ninoslav Mimica and Iva Holmerova and Philip Larkin and Pereira, \{Sandra Martins\} and Rietjens, \{Judith A.C.\} and Ida Korfage",

note = "Publisher Copyright: {\textcopyright} 2023 The Authors. Alzheimer's \& Dementia published by Wiley Periodicals LLC on behalf of Alzheimer's Association.",

year = "2024",

month = feb,

doi = "10.1002/alz.13526",

language = "English",

volume = "20",

pages = "1309--1320",

journal = "Alzheimer's and Dementia",

issn = "1552-5260",

publisher = "John Wiley and Sons Inc.",

number = "2",

}

TY - JOUR

T1 - Consensus definition of advance care planning in dementia

T2 - a 33-country Delphi study

AU - European Association for Palliative Care

AU - Steen, Jenny T. van der

AU - Nakanishi, Miharu

AU - Van den Block, Lieve

AU - Di Giulio, Paola

AU - Gonella, Silvia

AU - in der Schmitten, Jürgen

AU - Sudore, Rebecca

AU - Harrison Dening, Karen

AU - Parker, Deborah

AU - Mimica, Ninoslav

AU - Holmerova, Iva

AU - Larkin, Philip

AU - Pereira, Sandra Martins

AU - Rietjens, Judith A.C.

AU - Korfage, Ida

PY - 2024/2

Y1 - 2024/2

N2 - 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.

AB - 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.

KW - Advance care planning

KW - Conceptualization

KW - Decision-making

KW - Dementia

KW - Palliative care

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DO - 10.1002/alz.13526

M3 - Article

C2 - 37985444

SN - 1552-5260

VL - 20

SP - 1309

EP - 1320

JO - Alzheimer's and Dementia

JF - Alzheimer's and Dementia

IS - 2

ER -

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

Abstract

UN SDGs

Keywords

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CEGE: Research Center in Management and Economics

PAL-RES: Integrated care: Transferring, integrating, and evaluating complex and comprehensive palliative care interventions, organizational models, knowledge, philosophy, experiences, and practices across healthcare provision through (bio)ethics empirical research

Cite this

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

Abstract

UN SDGs

Keywords

Access to Document

Other files and links

Fingerprint

Projects

CEGE: Research Center in Management and Economics

PAL-RES: Integrated care: Transferring, integrating, and evaluating complex and comprehensive palliative care interventions, organizational models, knowledge, philosophy, experiences, and practices across healthcare provision through (bio)ethics empirical research

Cite this