Tensions in advance care planning with dementia: time for a good-enough laid-back approach?

Abstract

Ten years ago we considered research we no longer need on dementia palliative care which includes advance care planning.1 More recently, we have considered advances in advance care planning research,2,3 arguing why research into dementia-specific approaches are needed.2 However, an exclusive focus on dementia could be considered to be stigmatising.4,5 Therefore, in this editorial, we consider the conceptualization of advance care planning in a generic versus a dementia-specific manner as a major tension. We define tensions as opposing forces that create a dilemma, making it necessary to choose, even though the choice will still involve some difficulty or strain. Tensions are inherent to the reality of advance care planning and more so, in the case of dementia. They arise around the involvement of family, the changes in people’s decision-making capacity, or in communicating with people who have a disease that can take a long and rather unpredictable course.6 In this editorial, we reconsider what future research we need to conduct, considering the general and dementia-specific tensions inherent to engaging people in tailored advance care planning approaches. Our central argument is that the remaining tensions on advance care planning in dementia are at times unresolvable; embracing them and work from there might be more effective than aiming to solve them.