Future policy and research for advance care planning in dementia: consensus recommendations from an international Delphi panel of the European Association for Palliative Care

Advance 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.