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Optimizing Advance Care Planning in Dementia: Recommendations From a 33-Country Delphi Study
JT. van der Steen, L. Van den Block, M. Nakanishi, K. Harrison Dening, D. Parker, P. Larkin, PD. Giulio, J. In der Schmitten, RL. Sudore, N. Mimica, I. Holmerova, S. Martins Pereira, IJ. Korfage, European Association for Palliative Care (EAPC)
Jazyk angličtina Země Spojené státy americké
Typ dokumentu časopisecké články
- MeSH
- delfská metoda MeSH
- demence * terapie MeSH
- konsensus MeSH
- lidé MeSH
- paliativní péče MeSH
- péče o umírající MeSH
- předběžné plánování péče * MeSH
- Check Tag
- lidé MeSH
- mužské pohlaví MeSH
- Publikační typ
- časopisecké články MeSH
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 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
Division of Geriatrics Department of Medicine University of California San Francisco CA USA
Faculty of Health and Life Sciences De Montfort University Leicester UK
Research and Publications Dementia UK London UK
San Francisco Veterans Affairs Medical Center San Francisco CA USA
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
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- $a van der Steen, Jenny T $u Department of Public Health and Primary Care (JTS, MN), Leiden University Medical Center, Leiden, The Netherlands; Department of Primary and Community Care (JTS), Radboud University Medical Center, Nijmegen, The Netherlands and Cicely Saunders Institute, King's College London, UK. Electronic address: jtvandersteen@lumc.nl
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- $a 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.
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