Co-production and engagement of people with dementia: The issue of ethics and creative or intellectual copyright

Abstract

owned the creative copyright. This Editorial is not considering the ethics of using people with dementia in research, as that is clear in the literature. It is important to note that this was not the case in the poetry pilot project, and the researchers treated all participants with the utmost respect and adhered to all ethical and other protocols. The way my poem appeared on Twitter, is what highlighted not that researchers are not following strict research ethic protocols, but rather, people who are engaging with people with dementia, outside of formal research may not be considering them. Specifically, it will consider the creative and intellectual copyright or ownership of people with dementia in general, and whether this issue has been neglected, or even considered as a valid concern. Almost all others providing intelligence or creative to a piece of work receive full credit, and most often also are paid for their contribution. This is not happening to people with dementia, and all too often, we are still listed on documents as 'People/person with dementia', just as we are too often still listed that way on a conference or event program. It is not only offensive it is disabling and stigmatising to be nameless and undervalued, and it is my hope this article opens the door to a more morally and ethically considered approach to how people with dementia are being 'engaged' beyond formal research. People with dementia are rarely funded to be the people standing on the podiums at conferences and events presenting the work, missing out on the full acknowledgement of their sometimes vast contributions given for free or almost no payment other than being

Young onset dementia: Public involvement in co-designing community-based support

“…It is worth noting the subtle distinction between PPI contributors and participants and the purpose to which information is used. The blurring of boundaries between the ‘dual role’ of participant and PPI contributor has been reported before (Wilson et al., 2015), is recognised in the current body of PPI literature (Keenan et al., 2017; Pandya-Wood, Barron, & Elliott, 2017; Swaffer, 2016) and raises specific ethical issues within dementia research, as PPI does not require ethical consent (INVOLVE, 2016). There is a need to clarify how this information is systematically collected and organised to ensure that people with YOD have the opportunity to debate and challenge service planning and delivery.…”

Evaluation of the Good Life Festival: a model for co-produced dementia events

“…The co-production process respected all contributions with the appropriate public acknowledgement (Swaffer, 2014) as authorship of this paper is shared. Although payment was not given, this was in keeping with previous agreements regarding how SIfD would work with the associates and how their work is recognised and rewarded.…”

The Affective Creativity of a Couple in Dementia Care

“…In this sense, my fieldwork was collaborative in that participants as well as non-participants not only contributed to the research by way of co-presence and dwelling, but also performed their ordinary practices on their own terms and according to their own interests, and at their own speed (Fabian 2014 ). This ethnography is thus performative, reflexive and ethical, appreciating all subjects involved in the study including non-human beings, not only as participants but also as co-producers (Zeilig, West, and van der Byl Williams 2018 ; Swaffer 2016 ; Kontos et al 2015 ). Consequently, although non-participants remain anonymous throughout the study, without addressing their co-presence and dynamic “transmission of affect” (Brennan 2004 :3) I cannot demonstrate the whole lives of the participants.…”