Browsing by Author "Nakanishi, Miharu"
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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.
- Optimizing advance care planning in dementia: recommendations from a 33-country Delphi studyPublication . European Association for Palliative Care (EAPC); Steen, Jenny T. van der; Block, Lieve Van den; Nakanishi, Miharu; Dening, Karen Harrison; Parker, Deborah; Larkin, Philip; Giulio, Paola Di; Schmitten, Jürgen in der; Sudore, Rebecca L.; Mimica, Ninoslav; Holmerova, Iva; Pereira, Sandra Martins; Korfage, Ida J.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.