A changing landscape for advance directives in dementia research

The number of persons afflicted by dementia has increased steadily. The need for research leading to diagnostic and therapeutic interventions is widely recognized. However, dementia patients eventually lose the capacity to consent to the very research that could lead to discoveries of effective interventions. Worldwide, surrogate decision-making remains the primary means of consent for this population. This significantly restricts the autonomy of competent patients who wish to prospectively consent to research and do not wish to relinquish this decision to a third party. Advance research directives (ARDs) have been proposed as a mechanism for prospective consent for persons who anticipate cognitive impairment, as in the case of prodromal or early stage dementia patients. Currently, few guidelines specifically address the use of ARDs despite calls for official recognition. This absence of official guidelines regarding ARDs renders this mechanism susceptible to misuse, under-use, or non-use in instances where it could be advantageous for individuals, their families/caregivers, and progress in dementia research and treatment. This paper explores the changing landscape of ARDs, identifying relevant scientific, social, and policy developments, and queries whether, under these circumstances, reticence to use, recognize, or regulate ARDs is justified. It addresses some of the persistent issues related to vulnerability, the role of surrogates, and scope of prospective consent, and concludes that ARDs can serve as an important mechanism of autonomy and empowerment, and that protections should be crafted such that the availability of this option is not limited to those who also appoint a surrogate.