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Updated: Mar 13, 2026

Involving Individuals with Developmental Language Disorder and Their Parents/Carers in Research Priority Setting
Published on: June 6, 2020
Visioning change: Co-producing a model of involvement and engagement in research (Innovative Practice)
Caroline M Swarbrick1, Open Doors2, 3
1Division of Nursing, Midwifery and Social Work, University of Manchester, UK.
Abstract:
The involvement of people living with dementia in research has traditionally been located in the realms of 'subject' or 'participant'. However, there has been an increase in demand for greater transparency by academic bidding teams (particularly within the UK) in demonstrating how people with a lived experience have been and will be involved in the research process. Located within the Economic and Social Research Council/National Institute for Health Research (ESRC/NIHR)-funded Neighbourhoods and Dementia Study (2014-2019), led by The University of Manchester (UK), this paper outlines the development of the CO-researcher INvolvement and Engagement in Dementia (COINED) Model, which was co-produced alongside three independent groups of people living with dementia: Open Doors, the Scottish Dementia Working Group and EDUCATE.
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