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

Jenny T. van der Steen; Miharu Nakanishi; Lieve Van den Block; Paola Di Giulio; Silvia Gonella; Jürgen in der Schmitten; Rebecca L. Sudore; Karen Harrison Dening; Deborah Parker; Ninoslav Mimica; Iva Holmerova; Philip Larkin; Sandra Martins Pereira; Judith A.C. Rietjens; Ida J. Korfage

doi:10.1002/alz.13526

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

Jenny T. van der Steen^*
, Miharu Nakanishi
, Lieve Van den Block
, Paola Di Giulio
, Silvia Gonella
, Jürgen in der Schmitten
, Rebecca L. Sudore
, Karen Harrison Dening
, Deborah Parker
, Ninoslav Mimica
, Iva Holmerova
, Philip Larkin
, Sandra Martins Pereira
, Judith A.C. Rietjens
, Ida J. Korfage

^*Corresponding author for this work

Public Health

Leiden University Medical Centre
Radboud University Medical Center
Tohoku University
Vrije Universiteit Brussel
University of Turin
Azienda Ospedaliera - Universitaria Città della Salute e della Scienza di Torino
University of Duisburg-Essen
University of California at San Francisco
Department of Veterans Affairs
Dementia UK
De Montfort University
University of Technology Sydney
University Psychiatric Hospital Vrapče
Charles University
University Hospital Lausanne
Catholic University of Portugal
Delft University of Technology

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

76 Citations (Scopus)

99 Downloads (Pure)

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. Highlights: This article offers a consensus definitional framework of advance care planning in dementia. The definition covers all stages of capacity and includes family caregivers. Particularly important are (1) capacity, (2) family, (3) engagement, and communication. Fluctuating capacity was visualized in relation to roles and engaging stakeholders.

Original language	English
Pages (from-to)	1309-1320
Number of pages	12
Journal	Alzheimer's and Dementia
Volume	20
Issue number	2
Early online date	20 Nov 2023
DOIs	https://doi.org/10.1002/alz.13526
Publication status	Published - Feb 2024

Bibliographical note

Publisher Copyright:
© 2023 The Authors. Alzheimer's & Dementia published by Wiley Periodicals LLC on behalf of Alzheimer's Association.

UN SDGs

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

SDG 3 Good Health and Well-being

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Cite this

van der Steen, J. T., Nakanishi, M., Van den Block, L., Di Giulio, P., Gonella, S., in der Schmitten, J., Sudore, R. L., Harrison Dening, K., Parker, D., Mimica, N., Holmerova, I., Larkin, P., Martins Pereira, S., Rietjens, J. A. C., & Korfage, I. J. (2024). Consensus definition of advance care planning in dementia: A 33-country Delphi study. Alzheimer's and Dementia, 20(2), 1309-1320. https://doi.org/10.1002/alz.13526

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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. Highlights: This article offers a consensus definitional framework of advance care planning in dementia. The definition covers all stages of capacity and includes family caregivers. Particularly important are (1) capacity, (2) family, (3) engagement, and communication. Fluctuating capacity was visualized in relation to roles and engaging stakeholders.",

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

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",

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van der Steen, JT, Nakanishi, M, Van den Block, L, Di Giulio, P, Gonella, S, in der Schmitten, J, Sudore, RL, Harrison Dening, K, Parker, D, Mimica, N, Holmerova, I, Larkin, P, Martins Pereira, S, Rietjens, JAC & Korfage, IJ 2024, 'Consensus definition of advance care planning in dementia: A 33-country Delphi study', Alzheimer's and Dementia, vol. 20, no. 2, pp. 1309-1320. https://doi.org/10.1002/alz.13526

TY - JOUR

T1 - Consensus definition of advance care planning in dementia

T2 - A 33-country Delphi study

AU - van der Steen, Jenny T.

AU - Nakanishi, Miharu

AU - Van den Block, Lieve

AU - Di Giulio, Paola

AU - Gonella, Silvia

AU - in der Schmitten, Jürgen

AU - Sudore, Rebecca L.

AU - Harrison Dening, Karen

AU - Parker, Deborah

AU - Mimica, Ninoslav

AU - Holmerova, Iva

AU - Larkin, Philip

AU - Martins Pereira, Sandra

AU - Rietjens, Judith A.C.

AU - Korfage, Ida J.

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. Highlights: This article offers a consensus definitional framework of advance care planning in dementia. The definition covers all stages of capacity and includes family caregivers. Particularly important are (1) capacity, (2) family, (3) engagement, and communication. Fluctuating capacity was visualized in relation to roles and engaging stakeholders.

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. Highlights: This article offers a consensus definitional framework of advance care planning in dementia. The definition covers all stages of capacity and includes family caregivers. Particularly important are (1) capacity, (2) family, (3) engagement, and communication. Fluctuating capacity was visualized in relation to roles and engaging stakeholders.

UR - https://www.scopus.com/pages/publications/85177234602

U2 - 10.1002/alz.13526

DO - 10.1002/alz.13526

M3 - Article

C2 - 37985444

AN - SCOPUS:85177234602

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

Bibliographical note

UN SDGs

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