Browsing by Author "Sudore, Rebecca"
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- Consensus definition of advance care planning in dementia: a 33-country Delphi studyPublication . European Association for Palliative Care; Steen, Jenny T. van der; Nakanishi, Miharu; Van den Block, Lieve; Di Giulio, Paola; Gonella, Silvia; in der Schmitten, Jürgen; Sudore, Rebecca; Harrison Dening, Karen; Parker, Deborah; Mimica, Ninoslav; Holmerova, Iva; Larkin, Philip; Pereira, Sandra Martins; Rietjens, Judith A.C.; Korfage, IdaINTRODUCTION: 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.