Guiding the Future: Rethinking the Role of Advance Directives in the Care of People with Dementia

Abstract

When people lose capacity to make a medical decision, the standard is to assess what their preferences would have been and try to honor their wishes. Dementia raises a special case in such situations, given its long, progressive trajectory during which others must make substituted judgments. The question of how to help surrogates make better-informed decisions has led to the development of dementia-specific advance directives, in which people are given tools to help them communicate what their preferences are while they are still able. Such directives allow the perspective of the person to play a clearer role in guiding decisions about their care. Dementia directives can never serve as rigid algorithms. Rather, they can be used to help inform conversations, to help surrogates make decisions that are better aligned with the preferences the person would have had. This essay lays out the proposed utility of dementia-specific directives and addresses some of the criticisms raised about them.