CONTEXT: Advance care planning (ACP) is relevant yet challenging with cognitive decline. OBJECTIVE: To provide evidence and consensus-based clinical recommendations for how to conduct ACP in dementia. METHODS: International Delphi study conducted by the European Association for Palliative Care 'ACP in dementia' taskforce with four online surveys (September 2021-June 2022). A panel of 107 experts from 33 countries and seven individuals with dementia contributed. The recommendations specific for dementia were initially based on two earlier Delphi studies and literature searches addressing guidance including the right timing and how to personalize ACP. We used conservative preregistered criteria for consensus. RESULTS: Thirty constitutive elements of ACP were identified (e.g., 'assess understanding of ACP'). Only five were deemed 'optional.' The panel estimated a median of four conversations could address elements to be addressed at least once. Recommendations included to assume capacity as a principle, conscious of the need to explore its fluctuation, to encourage engaging and playing active roles, and to establish connection and inform and prepare family. There was a consensus to offer ACP around dementia diagnosis, to raise end-of-life issues later, and to personalize ACP with flexibility, providing of information and exploring understanding. The advice of the persons with dementia pointed to a wish for a well-coordinated holistic approach. CONCLUSION: Consensus was reached, including in areas of ambiguity, to guide ACP in dementia. ACP should be embedded in a nonprescriptive, individualized approach that involves both the person with dementia and their families. Future studies may evaluate trade-offs between optimal ACP and feasible implementation.

Department of Psychiatric Nursing Leiden University Medical Center Leiden The Netherlands

Department of Public Health and Primary Care Radboud University Medical Center Nijmegen The Netherlands and Cicely Saunders Institute King's College London UK

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

Department of Public Health Sciences and Pediatrics Turin University Turin Italy

Division of Geriatrics San Francisco CA USA

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 NSW 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 De Montfort University Leicester UK

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

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

VUB UGent End of Life Care Research Group Jette Brussels Belgium

Citace poskytuje Crossref.org