Background Although loss of decision-making capacity forms part of the expected trajectory of dementia progression, advance care planning (ACP) is not routine in dementia care.
Methods Dementia-specific ACP intervention piloted with 20–30 patient-relative dyads in the context of a university memory clinic in French-speaking Switzerland. Recruiting patients with early dementia and preserved decisional capacity and piloting this intervention unveiled unforeseen obstacles. We want to present these obstacles and discuss potential strategies in order to advance ACP research internationally.
Results Concern that ACP may cause distress to patients and their families was evidenced by the fact that the research ethics committee required formal consent of the patients’ primary care physicians as well as an emergency response plan to address distress emerging during ACP. Care professionals in the memory clinic showed substantial gatekeeping, based on a reluctance to inform patients and families about the dementia course and complications and on skepticism about the ethical justification of ACP. The distinction between ACP and traditional advance directives is also unclear to many health professionals who therefore do not see the benefit of ACP. Despite these barriers, people with dementia and their relatives report relief after ACP conversations they had and were satisfied with the tool.
Conclusion Paternalism and misconceptions among healthcare providers have the power to impede research and implementation of ACP. There is an urgent need to increase healthcare providers’ awareness and knowledge of ACP in French-speaking Switzerland. Working with patient advocacy groups offers opportunities to promote ACP in dementia care.
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