Research Advance Directives: Ethical Implications for Persons with Alzheimer’s Disease, and for the Families of Elderly Dementia Patients

As both human longevity and diagnostic ability improve, more individuals are being diagnosed with Alzheimer’s dementia disease (Alzheimer’s). Yet there is a paucity of new Alzheimer’s research trials. One obstacle to research is the large number of Alzheimer’s patients deemed incapable of providing informed consent for clinical research. Research advance directives (RADs) offer patients the opportunity to provide informed consent before incapacity occurs. However, critics question whether RADs guarantee informed consent, claiming that due to the nature of the disease, the consenting agent is no longer the same person after becoming incapacitated. This paper assesses the debate while using a conception of personhood, informed by the latest Alzheimer’s research, which does not reduce the concept of personhood to psychological capacities. It explains how personal identity can persist despite Alzheimer’s, such that RADs can and should suffice for informed consent.