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

Area of Science:

• Palliative Care
• Gerontology
• Neurology

Background:

• Advance care planning (ACP) is crucial but complex for individuals experiencing cognitive decline.
• Dementia presents unique challenges in conducting effective ACP.

Purpose of the Study:

• To establish evidence-based, consensus-driven clinical recommendations for conducting ACP in dementia.
• To address the specific needs and challenges of ACP for individuals with dementia.

Main Methods:

• An international Delphi study involving 107 experts and seven individuals with dementia across 33 countries.
• Utilized four online surveys from September 2021 to June 2022, building upon prior Delphi studies and literature reviews.
• Employed conservative, preregistered criteria to achieve consensus on recommendations.

Main Results:

• Identified 30 essential elements of ACP, with only five considered optional.
• Recommended assuming capacity, acknowledging its fluctuations, and encouraging active roles for persons with dementia.
• Consensus reached to offer ACP upon dementia diagnosis, address end-of-life issues later, and personalize planning with flexibility.
• Individuals with dementia expressed a desire for a coordinated, holistic approach.

Conclusions:

• Achieved consensus on guiding ACP in dementia, even in ambiguous areas.
• Advocates for embedding ACP within a nonprescriptive, individualized approach involving both the person with dementia and their families.
• Highlights the need for future research on balancing optimal ACP with practical implementation.