Research With People With Dementia—Ethical Reflections on Qualitative Research Praxis on Mobility in Public Space

Abstract

In this contribution, we present an empirical description and theoretical reflection of our experience with ethical questions in qualitative research involving people with dementia. The participants in the project "Dementia on the Move: Study and Recommendations for a Dementia-Friendly Public Space (09/2016-12/2018)" are people with dementia. In this study, we used narrative interviews and accompanied participants on walks through the neighborhood to find out more about their everyday experiences and mobility needs; and we tested existing technical supports with respect to their usability. Crucial ethical challenges emerged in the theoretical foundation of the study and continued through its preparation and empirical realization. In the light of the standards of institutionalized ethics review committees, we discuss the principle of "informed consent" as "process consent." Our decision to openly address "dementia" in the conversation with persons with dementia lies at the heart of the tensions between transparent information, the risk to harm, and the chance to empower persons with dementia.