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 - Rietjens, Judith A.C.
AU - More Authors, null
PY - 2023
Y1 - 2023
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.
KW - advance care planning
KW - conceptualization
KW - decision-making
KW - dementia
KW - palliative care
UR - http://www.scopus.com/inward/record.url?scp=85177234602&partnerID=8YFLogxK
U2 - 10.1002/alz.13526
DO - 10.1002/alz.13526
M3 - Article
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 -