Advance care planning trigger points: a relational approach to enhance advance care planning discussion with and for people living with dementia

Introduction: Advance Care Planning (ACP) is an ongoing process that enables individuals to express, discuss and document their personal values, preferences of care in case of future incapacitation or terminal illnesses. Engaging in ACP discussion is particularly challenging with and for people living with dementia (PwD) due to symptoms of forgetfulness and fluctuating mental capacity. The current recommendation suggests an early ACP discussion with PwD during the ‘windows of opportunity’ period; however, the lack of explicit identification of such timing impedes their end-of-life care experiences.

Aims: To identify if there is an optimal timing to discuss ACPs with and for PwD

Method: Narrative online and telephone interviews were conducted with 13 PwD and 23 family carers. A narrative analysis was undertaken.

Results: The narrative of ‘ACP tipping points’ was indicated by participants which encapsulated the pivotal moments across the disease trajectory that triggered PwD and their keypersons -who often are families or healthcare professionals with established trusting relationships- to discuss their ACPs. These trigger points could occur before the diagnosis, immediately after the official diagnosis and years after the diagnosis. They encompassed several ACP aspects beyond the medical decisions, emphasising the totality of ACP.

Conclusion: The trigger points relationally occurred throughout the dementia journey, making it highly unlikely to locate a generic, single ideal ‘window of opportunity’ period for PwD to discuss their ACP. Instead, a key point to consider is the interactions between PwD and their key persons around each trigger point, and how to provide relational support needed at those particular moments.

Impact: The ACP trigger points challenge the concept of window of opportunity and propose an alternative, relational approach to ACP with and for PwD. This could potentially render their ACP more reflective of their changing needs thereby enhancing improved person-centred care for PwD.