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

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; European Association for Palliative Care (EAPC),

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

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 European Association for Palliative Care (EAPC),

Permalink

Publisher:: Wiley
Publication Type:: Journal Article
Citation:: Alzheimers Dement, 2023
Issue Date:: 2023-11-20

Open Access

Copyright Clearance Process

Recently Added
In Progress
Open Access

This item is open access.

Adobe PDF

Download Published versionAdobe PDF (744.81 kB)

View on publisher's site

View statistics

Full metadata record

Field	Value	Language
dc.contributor.author	van der Steen, JT
dc.contributor.author	Nakanishi, M
dc.contributor.author	Van den Block, L
dc.contributor.author	Di Giulio, P
dc.contributor.author	Gonella, S
dc.contributor.author	In der Schmitten, J
dc.contributor.author	Sudore, RL
dc.contributor.author	Harrison Dening, K
dc.contributor.author	Parker, D https://orcid.org/0000-0003-2552-8613
dc.contributor.author	Mimica, N
dc.contributor.author	Holmerova, I
dc.contributor.author	Larkin, P
dc.contributor.author	Martins Pereira, S
dc.contributor.author	Rietjens, JAC
dc.contributor.author	Korfage, IJ
dc.contributor.author	European Association for Palliative Care (EAPC),
dc.date.accessioned	2023-12-01T00:42:12Z
dc.date.available	2023-09-29
dc.date.available	2023-12-01T00:42:12Z
dc.date.issued	2023-11-20
dc.identifier.citation	Alzheimers Dement, 2023
dc.identifier.issn	1552-5260
dc.identifier.issn	1552-5279
dc.identifier.uri	http://hdl.handle.net/10453/173627
dc.description.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.
dc.format	Print-Electronic
dc.language	eng
dc.publisher	Wiley
dc.relation.ispartof	Alzheimers Dement
dc.relation.isbasedon	10.1002/alz.13526
dc.rights	info:eu-repo/semantics/openAccess
dc.subject	1103 Clinical Sciences, 1109 Neurosciences
dc.subject.classification	Geriatrics
dc.subject.classification	3202 Clinical sciences
dc.subject.classification	3209 Neurosciences
dc.subject.classification	5202 Biological psychology
dc.title	Consensus definition of advance care planning in dementia: A 33-country Delphi study.
dc.type	Journal Article
utslib.location.activity	United States
utslib.for	1103 Clinical Sciences
utslib.for	1109 Neurosciences
pubs.organisational-group	/University of Technology Sydney
pubs.organisational-group	/University of Technology Sydney/Faculty of Health
pubs.organisational-group	/University of Technology Sydney/Strength - CHT - Health Technologies
pubs.organisational-group	/University of Technology Sydney/Centre for Health Technologies (CHT)
utslib.copyright.status	open_access	*
dc.date.updated	2023-12-01T00:42:11Z
pubs.publication-status	Published online

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.

Please use this identifier to cite or link to this item:

http://hdl.handle.net/10453/173627