2021 Articles

Advance Directives and Research Advance Directives: Preserving Legacy and Autonomy in Alzheimer’s Disease

Hart, Dean

This paper explores a way to ensure a person’s autonomy and legacy are preserved during the experience of dementia due to Alzheimer’s disease. Due to the profound effect the disease has on memory, the “person of the lifetime” (the person’s past experiences and their future aspirations prior to disease progression) becomes seemingly disconnected from the “person of the moment,” or the person experiencing memory loss. Thus, directives are important to recognize and maintain continuity of person. Yet, a person’s “legacy,” based on the person’s values and philosophy, can serve as a bridge between those two identities. Ultimately, people with significant memory loss from Alzheimer’s disease are unable to secure their own legacy due to the diminishing ability to make autonomous decisions as the disease progresses. A legal system that codifies the ability to create a requirement to honor ADs and research advance directives (RADs) can best secure the autonomy of the person of the lifetime, and thus the person’s legacy, of the person Alzheimer’s disease.