To progress advance care planning (ACP) with people with dementia and their family has been a goal of the European Association for Palliative Care taskforce ACP in dementia. A Delphi study with panellists from 33 countries across the globe reached a consensus on how ACP is defined to include persons with dementia in all stages of their disease and their family caregivers, and on policy and research gaps. The most recent paper, published on 9 April in The Lancet Healthy Longevity, addresses recommendations for policy and research. Eleven recommendations concern the regulation of advance directives, equity of access, and dementia-inclusive approaches and conversations to express patients’ values.
Identified research gaps included the need for an evidence-based dementia-specific practice model that optimises engagement and communication with people with fluctuating and impaired capacity and their families to support decision making, while also empowering people to adjust their decisions if their goals or preferences change over time. Policy gaps included insufficient health services frameworks for dementia-inclusive practice. The results highlight the need for more evidence and policy development that support inclusive ACP practice models. The consensus-based recommendations and identification of research and policy gaps provide key starting points for discussion across multiple stakeholders including people with dementia.
