Defining advance care planning from the perspective of people with dementia: Focus groups with the European Working Group of People with dementia

Abstract

AbstractBackgroundThe European Association for Palliative Care (EAPC) defines advance care planning (ACP) as a process enabling individuals with decisional capacity to define goals and preferences for future medical treatment and care, discuss these with family and health‐care providers, and record and review them if appropriate. There are concerns that this and other definitions may not apply to ACP in the context of dementia. ACP needs for people with dementia differ from those of people with other diseases. Furthermore, current definitions are not informed by input from people with dementia, but rely on professional expert recommendations. We gathered the perspectives of the European Working Group of People with Dementia (EWGPWD) regarding the EAPC ACP definition to explore its applicability in the context of dementia.MethodsWe conducted 3 online focus groups with members of the EWGPWD (n = 12) and their supporters (n = 9). We deconstructed ACP in four topics revolving around the what, why, who, and when of ACP to guide discussions. To analyze the data, we used inductive thematic analysis.ResultsThree key issues were highlighted as important to consider in an ACP definition which would be inclusive for people with dementia. First, participants disagreed with the focus on people with decisional capacity, as they saw loss of capacity as a gradual process that depends on context and should be supported throughout the dementia trajectory. Second, although some noted that family dynamics vary, the essential role of families or trust‐based relationships was found to be under‐addressed, as families were generally considered to have personal knowledge of the person with dementia. Third, participants suggested that ACP is too centered on medical care. It should include broader conversations on what matters to people in the future, social care, and future daily life activities.ConclusionWe identified three points of contention with the EAPC ACP definition corresponding to dementia‐specific issues. The perspectives of the EWGPWD emerging from our focus groups contribute to the understanding of ACP in the context of dementia and highlight the need for a dementia‐inclusive ACP definition focusing on the issues of decisional capacity, family involvement and social aspects of care.