Department of Public Health and Primary Care, Leiden University Medical Center, Leiden, The Netherlands.
Department of Primary and Community Care, and Radboudumc Alzheimer Center, Radboud university medical center, Nijmegen, The Netherlands.
Alzheimers Dement. 2024 Feb;20(2):1309-1320. doi: 10.1002/alz.13526. Epub 2023 Nov 20.
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.
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.
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.
A communication and relationship-centered definitional framework of ACP in dementia evolved through international consensus supporting inclusiveness of persons with dementia and their family.
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.
现有的预先医疗照护计划（ACP）定义框架适用于有决策能力的个体。我们旨在根据其定义和值得特别关注的问题来概念化痴呆症的 ACP。
德尔菲研究分为三个阶段：（A）欧洲姑息治疗协会（EAPC）的一个工作组对通用 ACP 框架进行改编；（B）2021 年 9 月至 2022 年 6 月，来自 33 个国家的 107 名专家进行了四轮在线调查；（C）EAPC 理事会批准。
痴呆症的 ACP 被定义为适应个人能力的沟通过程，其中包括如果有家庭成员的话，也会继续与他们沟通。我们确定了关于参与和时间（即当前或生命末期护理）的实际边界。需要特别关注的三个相互关联的问题是能力、家庭以及参与和沟通。
通过国际共识，形成了一个以沟通和关系为中心的痴呆症 ACP 定义框架，支持包括痴呆症患者及其家庭成员在内的所有人的包容性。
本文提供了一个关于痴呆症预先医疗照护计划的共识定义框架。该定义涵盖了所有能力阶段，并包括了家庭照顾者。特别重要的是（1）能力、（2）家庭、（3）参与和沟通。能力的变化与角色和参与利益相关者有关。
