We held a works-in-progress seminar for a draft manuscript of a position paper for the American Academy of Neurology on ethical considerations in dementia care, drafted by Winston Chiong. We began by considering opportunities and challenges in presenting ethical arguments, not from one’s own point of view, but instead on behalf of a large organization.
We were fortunate to have input from members of diverse disciplines, including law, nursing, and social work. Points of focus for improving the manuscript included: clarifying the state of research on psychological outcomes of biomarker disclosure, reconciling traditional views about the role of genetic counseling with the popularity of direct-to-consumer genetic testing, and demystifying the roles of palliative care and Adult Protective Services. Two recurring themes in dementia ethics that also came up in this discussion were the centrality of capacity assessment and the challenge of balancing patient safety and respect for autonomy, for instance, in the context of reporting dementia diagnosis to the DMV.