From Ritual to Relationship

Abstract

There is an increasingly relevant debate around consent, particularly around persons with a dementia, across research and practice. This article will begin by critically reviewing the traditional competency-based approach to informed consent in research with older people who have dementia. Currently, most researchers are not describing how persons with dementia are included in the consent process other than through an extension of the traditional competency-based informed consent method. As yet there is little in the way of academic publications on developing methodologies or practical methods of inclusionary consent, despite the rapid development of so-called person-centred participatory research in dementia. The remainder of the article will describe work in progress on a theoretical foundation and an evolving method for including persons with dementia in consent processes. The article concludes that a revisionist person-centred inclusionary approach to consent, which values the interests of all parties involved, including the person with dementia, is a way forward in person-centred research. It is also suggested that dementia-friendly methods must be more rigorously tested and reported.