Browsing by Author "Van den Block, Lieve"
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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.
- Future policy and research for advance care planning in dementia: consensus recommendations from an international Delphi panel of the European Association for Palliative CarePublication . Nakanishi, Miharu; Pereira, Sandra Martins; Van den Block, Lieve; Parker, Deborah; Harrison-Dening, Karen; Di Giulio, Paola; in der Schmitten, Jürgen; Larkin, Philip J; Mimica, Ninoslav; Sudore, Rebecca L; Holmerová, Iva; Korfage, Ida J; Steen, Jenny T. van derAdvance care planning (ACP) is growing in importance in the global agenda for dementia care. The European Association for Palliative Care Taskforce (EAPC) on ACP in Dementia aimed to provide recommendations for policy initiatives and future research. We conducted a four-round Delphi study with a 33-country panel of 107 experts between September 2021 and June 2022 and approval by the EAPC Board. Consensus was achieved on 11 recommendations concerning advance directives’ regulation, equity of access, and dementia inclusive approaches and conversations to express patients’ values. Identified research gaps included the need for an evidence-based dementia-specific practice model that optimises engagement and communication with people with fluctuating and impaired capacity and their families to support their decision making, while also empowering people to adjust their decisions should their goals or preferences change over time. Policy gaps included a lack of health services frameworks for a dementia-inclusive practice. The results highlight the need for evidence and policy development that support inclusive ACP practice models.