Background Available advance care planning (ACP) definitions are for individuals with decision-making capacity. We aimed to conceptualise ACP in dementia in terms of its definition and issues that deserve particular attention.
Methods Delphi study in which a task force of the European Association for Palliative Care (EAPC) prepared content based on adaptation of a generic ACP framework. Next, we convened four online surveys, presenting it and providing general and personalized feedback to a panel of 107 experts from 33 countries between September 2021 and June 2022. Conservative criteria for consensus were determined a priori and registered in the WHO International Clinical Trials Registry Platform, ID NL9720.
Results ACP in dementia was defined as ‘a process of communication about future care and treatment preferences, values and goals with the person with dementia, family, and the healthcare team, preferably with ongoing conversations and documentation. This process is continued when the person with dementia becomes unable to make their own decisions.’ We specified pragmatic boundaries regarding participation and capacity, and regarding time window; ‘in advance’ meaning that current care can be discussed as a stepping stone to discuss preferences in advance, and not necessarily so discussing the end of life. Three issues of particular importance with dementia emerged from adaptations of the generic framework: capacity, family, and engagement and communication. Its interrelationships were visualized over time, and it all achieved a consensus, mostly after multiple iterations.
Conclusion ACP in dementia was defined as a communication process adapted to capacity and continued with family. A relationship-centered definitional framework of ACP in dementia evolved in international consensus supporting inclusiveness of persons with dementia and their family.
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