Working alongside older people with a learning disability: informing and shaping research design

Abstract

Accessible summary This paper is about working with people with learning disabilities to develop a research (or ‘finding out’) study. We worked with people from Reach, a group–advocacy project, which is part of Assist in Staffordshire, to write clear and simple information sheets and consent forms to help people with learning disabilities and dementia to participate in a research study. We also worked with members of Reach to create appropriate, clear and simple interview questions to ask people with learning disabilities and dementia about their experiences Working alongside people with learning disabilities helps to ensure the work is fit for purpose. AbstractBackground: There has been an increase in inclusive research in the learning disability field; however, this has not been reflected within learning disability and dementia research, where little is known from the perspective of people with learning disabilities. This paper will define inclusive research, explore reasons for the dearth of inclusive dementia research, and identify the challenges of conducting dementia research involving people with learning disabilities.Materials and Methods: Examples of working with people with learning disabilities to develop elements of a PhD research study will be detailed and critically discussed.Results: These experiences aided the creation of accessible material about dementia for a PhD research study. Subsequently, this helped to overcome challenges of communication within the research study and helped to promote the participation of people with learning disabilities and dementia.Conclusion: Sharing these ideas about how we worked together will help others who are seeking to engage and achieve more inclusive research practices with marginalised populations.