Preservation of the Capacity to Appoint a Proxy Decision Maker: Implications for Dementia Research

This study assessed the extent to which persons with Alzheimer’s disease retain their capacity to appoint a research proxy. More than 150 persons with Alzheimer’s disease were interviewed for their capacity to appoint a proxy for research and to provide consent to two hypothetical scenarios: a lower-risk randomized clinical trial testing a new drug and a higher-risk randomized clinical trial testing a neurosurgical intervention. Researchers concluded that a substantial proportion of Alzheimer’s disease subjects thought incapable of consenting to lower- or higher-risk studies have preserved capacity for appointing a research proxy. They suggested that providing for an appointed surrogate, which might best be done in the very early stages of the illness, may help address key ethical challenges to this research.

Kim SY, Karlawish JH, Kim HM, et al. Preservation of the capacity to appoint a proxy decision maker: Implications for dementia research. Archives of General Psychiatry 2011;68(2):214-20.