Consensus definition of advance care planning in dementia: A 33‐country Delphi study-Reference-Cited by-同舟云学术

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

Published:2023-11-20 Issue: Volume: Page:
ISSN:1552-5260
Container-title:Alzheimer's & Dementia
language:en
Short-container-title:Alzheimer's & Dementia

Author:

van der Steen Jenny T.¹²^ORCID,Nakanishi Miharu¹³^ORCID,Van den Block Lieve⁴^ORCID,Di Giulio Paola⁵^ORCID,Gonella Silvia⁶^ORCID,in der Schmitten Jürgen⁷^ORCID,Sudore Rebecca L.⁸⁹^ORCID,Harrison Dening Karen¹⁰¹¹^ORCID,Parker Deborah¹²^ORCID,Mimica Ninoslav¹³^ORCID,Holmerova Iva¹⁴^ORCID,Larkin Philip¹⁵^ORCID,Martins Pereira Sandra¹⁶^ORCID,Rietjens Judith A. C.¹⁷¹⁸^ORCID,Korfage Ida J.¹⁷^ORCID,

Affiliation:

1. Department of Public Health and Primary Care Leiden University Medical Center Leiden The Netherlands

2. Department of Primary and Community Care, and Radboudumc Alzheimer Center Radboud university medical center Nijmegen The Netherlands

3. Department of Psychiatric Nursing Tohoku University Graduate School of Medicine Aoba‐ku Sendai‐shi Miyagy Japan

4. VUB‐UGent End‐of‐Life Care Research Group Vrije Universiteit Brussel (VUB) Brussels Belgium

5. Department of Public Health Sciences and Pediatrics Turin University Turin Italy

6. Direction of Health Professions City of Health and Science University Hospital of Turin Turin Italy

7. Institute for General Practice/Family Medicine Medical Faculty University of Duisburg‐Essen Essen Germany

8. Division of Geriatrics Department of Medicine University of California [more locations] San Francisco California USA

9. San Francisco Veterans Affairs Medical Center San Francisco California USA

10. Research & Publications Dementia UK London UK

11. Faculty of Health & Life Sciences De Montfort University Leicester UK

12. IMPACCT/School of Nursing and Midwifery Faculty of Health University of Technology Sydney Australia

13. University Psychiatric Hospital Vrapče School of Medicine University of Zagreb Zagreb Croatia

14. Faculty of Humanities Centre of Expertise in Longevity and Long‐Term Care and Centre of Gerontology Charles University Prague Czech Republic

15. Palliative and Supportive Care Service and Institute of Higher Education and Research in Healthcare UNIL, Université de Lausanne CHUV, Centre hospitalier universitaire Vaudois Faculté de biologie et de médecine – FBM Institut universitaire de formation et de recherche en soins – Hôpital Nestlé Lausanne Switzerland

16. CEGE: Research Center in Management and Economics – Ethics and Sustainability Research Area Universidade Católica Portuguesa Católica Porto Business School Porto Portugal

17. Department of Public Health Erasmus MC University Medical Center Rotterdam Rotterdam The Netherlands

18. Department of Design Organisation and Strategy Faculty of Industrial Design Engineering Delft University of Technology Delft The Netherlands

Abstract

AbstractINTRODUCTIONExisting 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.METHODSDelphi 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.RESULTSACP 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.DISCUSSIONA 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.

Publisher

Wiley

Subject

Psychiatry and Mental health,Cellular and Molecular Neuroscience,Geriatrics and Gerontology,Neurology (clinical),Developmental Neuroscience,Health Policy,Epidemiology

Reference20 articles.

1. Defining Advance Care Planning for Adults: A Consensus Definition From a Multidisciplinary Delphi Panel

2. Overview of Systematic Reviews of Advance Care Planning: Summary of Evidence and Global Lessons

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