Paper short abstract:

Whereas anthropological analyses steadily embrace an ethics of dwelling, ethical procedures are often stuck in the grammar of mores. This paper will discuss the real-time consequences of pursuing an onto-ethico-epistemological entanglement in the design of research ethics with people with dementia.

Paper long abstract:

In their analysis of lived experience, anthropologists shift steadily to an ethics of dwelling and affirm the epistemic value of following embodied negotiations over mapping moral prescripts. Ethical procedures, however, tend to be frozen in the grammar of mores, rely on the identification of in/able participants and the confinement of ethnographic accountability, especially in research with 'vulnerable' selves. People with dementia are therefore often substituted by past, or even general 'selves', by kin or caregivers, hence re-affirming their inability to act 'properly' in this condition. Whereas analyses become increasingly emic and symmetric, research ethics are lagging behind in this regard.

This paper discusses the consequences of taking an onto-ethico-epistemological entanglement seriously, and acknowledge that, as the hyphens express permanent co-creativity, also research ethics is co-emergent. A diary kept during the launch of research, where trust still needs to be gained and promises and compromises tend to be made, documents the emotions, conflicts, potentials and solutions that come with the realization of scientific and human endeavors to radicalize response-ability in dementia research ethics. Haunting questions disrupt the 'workplan' if all becomes entangled, affective and processual: Is translating an ethics of dwelling into ethical procedures feasible, even desirable? Can an onto-ethico-epistemology produce realist and comfortable research situations for people with dementia and their peers? Is it reproducible? Is it potentially violent to participants, caregivers and institutions, to disrupt 'good practices' with uncertainty and open-endedness? If ethics is situational and multiple, as is dwelling, how far can we follow without being lost?