• Fanny Monnet, Ana Diaz, Dianne Gove, Charlèss Dupont, Lara Pivodic, and Lieve Van den Block.
• End-of-Life Care Research Group, Vrije Universiteit Brussel (VUB) and Ghent University, Brussels, Belgium.
• Palliat Med. 2024 Feb 1; 38 (2): 251263251-263.

BackgroundAdvance care planning has been defined in an international consensus paper, supported by the European Association for Palliative Care. There are concerns that this definition may not apply to dementia. Moreover, it is not informed by input from people with dementia.AimTo gather the perspective of the European Working Group of People with Dementia and their supporters on how advance care planning is defined and develop recommendations for changes to the definition.DesignAn in-depth qualitative study was conducted, analysing online focus groups and interviews using thematic analysis.Setting/ParticipantsWe included 12 people with dementia and 9 supporters.ResultsParticipants suggested several changes to the current advance care planning definition: mentioning people with decreasing decisional capacity; better reflecting the role of family and/or trust-based relationships; reducing focus on end-of-life/medical decisions; strengthening focus on social aspects of care. Elements of the current definition that participants suggested keeping and highlighting include the framing of advance care planning as a continuous process, that is also optional; mention of communication next to documentation of decisions; and the importance of proxy decision makers. Based on this input, we developed three overarching and 16 specific recommendations for a modified definition of advance care planning that is inclusive of people with dementia.ConclusionsThe perspectives of the European Working Group of People with Dementia and their supporters highlighted the need for a person-centred and dementia-inclusive advance care planning definition. We provide tangible recommendations for future adaptations of the definition that reflect these perspectives.

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