Optimizing Advance Care Planning in Dementia: Recommendations From a 33-Country Delphi Study

Abstract

Context: Advance care planning (ACP) is relevant yet challenging with cognitive decline.

Objective: To provide evidence and consensus-based clinical recommendations for how to conduct ACP in dementia.

Methods: International Delphi study conducted by the European Association for Palliative Care 'ACP in dementia' taskforce with four online surveys (September 2021-June 2022). A panel of 107 experts from 33 countries and seven individuals with dementia contributed. The recommendations specific for dementia were initially based on two earlier Delphi studies and literature searches addressing guidance including the right timing and how to personalize ACP. We used conservative preregistered criteria for consensus.

Results: Thirty constitutive elements of ACP were identified (e.g., 'assess understanding of ACP'). Only five were deemed 'optional.' The panel estimated a median of four conversations could address elements to be addressed at least once. Recommendations included to assume capacity as a principle, conscious of the need to explore its fluctuation, to encourage engaging and playing active roles, and to establish connection and inform and prepare family. There was a consensus to offer ACP around dementia diagnosis, to raise end-of-life issues later, and to personalize ACP with flexibility, providing of information and exploring understanding. The advice of the persons with dementia pointed to a wish for a well-coordinated holistic approach.

Conclusion: Consensus was reached, including in areas of ambiguity, to guide ACP in dementia. ACP should be embedded in a nonprescriptive, individualized approach that involves both the person with dementia and their families. Future studies may evaluate trade-offs between optimal ACP and feasible implementation.

Keywords: Advance care planning; decision making; dementia; end of life; guidelines; palliative care.

Fig. 1.

Relating the three issues specific to Advance care planning (ACP) in dementia and change over time. The Fig. shows how three dementia-specific issues (green text) that are of particular importance in the case of dementia in ACP may relate and change with dementia progression during the ACP process. It indicates an ideal model of the engagement in ACP of the person with dementia as long as possible given an unavoidable decline in capacity, along with engagement of the family who is available and involved in the ideal situation, and health care professional(s) with whom the person has trusting relationships. Shaded green indicates conversations outside health care. The green area shows the typical declining contribution and fluctuating active role played (Y axis) of the person with dementia due to decline in capacity (X axis), and the other areas show how this may influence active roles played in ACP by family and health care professional(s). Disclaimer: there are many other factors that influence roles in ACP, while the model cannot show its complexities or detail. Reproduced from: van der Steen JT et al.; EAPC, Alzheimer’s & dementia: the journal of the Alzheimer’s Association 2024;20(2):1309–1320. doi: 10.1002/alz.13526.

Fig. 2.

Building up the evidence and consensus based clinical guidance on ACP in dementia: Methods and sources. The evidence and consensus-based clinical recommendations represent the new, core end product presented in this manuscript, adding to other products of the task force answering the other two research questions: a definitional framework and recommendations for policy & research A detailed version of this Fig. is included in the Methods Supplement (number 3). ACP = advance care planning; EAPC = European Association for Palliative Care.

Fig. 3.

Flow chart participation delphi expert panel and response per survey round. ^aParticipants were defined as those who provided informed consent and completed survey items upon the first or the second invitation (no third invitation was sent to non-respondents). Overall response rate: 107/169 (63.3%) participated. Of the 107 (initial) participants, 11 (10.3%) completed a single round, 8 (7.48%) 2 rounds, 22 (20.6%) 3 rounds, and 66 (61.7%) completed all rounds. ^bWe forgot to send an invite to one of the participants. ^cOf 54 participants who completed 50–94%, 39 completed 92% which was the maximum percentage when missing a hidden item beneath a long list of possible outcomes for evaluation. Reproduced from: van der Steen JT et al.; EAPC, Alzheimer’s & dementia: the journal of the Alzheimer’s Association 2024;20(2):1309–1320. doi: 10.1002/alz.13526.

Fig. 4.

The elements of ACP in dementia by need to repeat in multiple conversations.^{a a}The three categories as a whole reached a consensus assuming that both the person with dementia and family are involved and that multiple conversations are possible. Items refer to elements of the conversation itself. Consensus was reached with high agreement for the three categories (median 5, IQR 1, excluding 1 do not know), and percentages agreement were 88.2% (n = 85) for category 1, 91.7 (n = 84) for category 2, and 92.7% (n = 82) for category 3. ^bThis item was rephrased for clarity after the category as a whole achieved a consensus, to replace the phrase ‘prioritize addressing information needs’. ^cIn round 1, 28 elements were introduced as a list, and the two elements 2f and 3c were added in round 2 based on an emerging public health approach where conversations can start outside healthcare (2f) and upon suggestions of the panelists (3c). In round 3, adding of these elements reached a consensus with high agreement (2f: median 5, IQR 1, 96.1% agreement, n = 76, 3 don’t know; 3c: median 5, IQR 1, 84.6% agreement, n = 78, 5 do not know). Supplement B1 provides detail on development over three evaluation rounds. Note that category numbers 1 and 2 were reversed compared to how they were presented to the panel which is in the Supplement. ACP = advance care planning.

Fig. 5.

Controversies and concerns around timing of bringing up the end of life expressed by the panellists. ACP = advance care planning.