Research participation of individuals with dementia

Abstract

Decisional capacity is a precious component of personhood and is progressively diminished in dementia. Conducting research with individuals with dementia demands a commitment to ensure the quest for knowledge does not overwhelm the rights of those it is intended to protect. The purposes of this article are to describe current understandings of the concept of decisional capacity, describe recent regulatory developments related to the consideration of additional protections for decisionally impaired adults, and provide recommendations for nurse investigators working with this vulnerable group.