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

JT. van der Steen, M. Nakanishi, L. Van den Block, P. Di Giulio, S. Gonella, J. In der Schmitten, RL. Sudore, K. Harrison Dening, D. Parker, N. Mimica, I. Holmerova, P. Larkin, S. Martins Pereira, JAC. Rietjens, IJ. Korfage, European Association...

. 2024 ; 20 (2) : 1309-1320. [pub] 20231120

Language English Country United States

Document type Journal Article

Persistent link   https://www.medvik.cz/link/bmc24007401

Grant support
K24 AG054415 NIA NIH HHS - United States

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.

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

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

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

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

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

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

Department of Public Health Sciences and Pediatrics Turin University Turin Italy

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

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

Faculty of Health and Life Sciences De Montfort University Leicester UK

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

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

Institute for General Practice Family Medicine Medical Faculty University of Duisburg Essen Essen Germany

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

Research and Publications Dementia UK London UK

San Francisco Veterans Affairs Medical Center San Francisco California USA

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

VUB UGent End of Life Care Research Group Vrije Universiteit Brussel Brussels Belgium

References provided by Crossref.org

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