Advance care planning in dementia Delphi study

Persons with dementia encounter diminished capacity for shared decision making about care and treatment in later stages of the disease. Therefore, in the early stages, conversations with professional and family caregivers about preferences for current, but also about future care may be encouraged. Involving family caregivers will help prepare and equip them for a central role in end-of-life decision making. Important goals and benefits of such proactive process called advance care planning or ACP, is that it can reduce uncertainty in decision making and facilitate providing of the preferred care. However, research has shown that in practice, advance care planning in dementia is often highly complex. Despite increasing research efforts, there is still little evidence how to best engage individuals with dementia and their family caregivers in advance care planning. There is clearly a need to synthesize what is known and to provide guidance based on evidence and on consensus among important stakeholders.

Based on evidence and consensus, we aim to conceptualise advance care planning in dementia in terms of its definition, elements, and any differences with advance care planning in persons with other diseases who are expected to retain capacity. Further, we aim to provide recommendations for optimal advance care planning in practice, for policy initiatives to promote advance care planning in dementia, and for areas that need research.

A multidisciplinary task force prepared initial guidance based on adaptation of guidance for those with capacity, extending it to dementia based on guidance on palliative care in dementia, literature and expertise within and around the task force. This is regarded a first, qualitative round of the Delphi study aimed at achieving consensus and highlighting any remaining divergence. This registration refers to the next rounds, a mixed quantitative and qualitative online survey among a wider Delphi panel of about 100 experts, in which we will also examine if personal and professional experience affects a consensus on guidance in advance care planning in dementia.

We hypothesize that a consensus will be achieved on most items but on some items, ambiguity will remain. Although Delphi panellists are experts in the field, in view of the complexities around advance care planning in dementia, we hypothesize that personal and professional experience affects agreement with guidance and importance attached to domains. We expect that (a) medics (physicians, physician assistants and nurse practitioners) will prefer a figure with medically oriented care goals and find the domain of capacity more important than other professionals; further (b), those with dementia care experience personally would find advance care planning in dementia more important overall; finally (c) those with mainly expertise in advance care planning with no significant specific dementia expertise, will find advance care planning more important overall but will provide lower agreement and importance ratings regarding the adapted definition and conceptualisation of domains of divergence.

Multiple online rounds, anticipating four or five are needed because of the complexity of the subject matter and because the extensive contents will be presented in batches.

We will present statements and figures for evaluation, and the feedback from the panel as the main Delphi study instruments.