Challenges in co‐produced dementia research: A critical perspective and discussion to inform future directions

Abstract

Key points There is a move towards meaningful collaboration of people living with dementia in the research process, but these processes are rarely critiqued, with more critical reflection needed. Current academic structures, frameworks, and funding processes limit meaningful collaboration, particularly in relation to academic language and hierarchies of evidence. There is a need for an environment that can enable the collaboration that is at the heart of a co‐produced ethos, but creating such an environment of reciprocity in dementia research requires extensive time, resources and emotional support. It is important to embrace the tensions of the contexts we, as researchers, work within and continue to strive towards learning and growth, and fairer and more equitable ways of working in co‐produced dementia research.

Arts and Mental Health Co-Research with Youth Advisors: The Role of Emotions, Creating Community, Learning and Growth

“…These reflections indicate that the recruitment process and onboarding materials need to be tailored to highlight the importance of people with hobbies or interests relevant to the research and minimise the use of potentially complex academic terminology, as well as giving more information regarding what the research involves and the role the youth will play. These experiences also align with broader research exploring the challenges of coproduction, such as in relation to bureaucratic academic structures and academic language that may be perceived as inaccessible [30].…”

Developing a person-centered stated preference survey for dementia with Lewy bodies: value of a personal and public involvement process

“…Similarly, all RAG contributors with DLB resided at home, thus excluding the perspectives of individuals with DLB in care settings, who may have more advanced dementia. Academic researchers at the ECRED have highlighted the ethical challenges associated with including individuals from care settings, particularly in circumstances lacking resources such as transportation to facilitate their participation (Warran et al, 2023 ). Future studies could consider using video conferencing platforms or arranging transport to facilitate the participation of those residing in care settings to participate in PPI initiatives.…”

“…In a reflexive essay, drawing on insights from academic researchers at the ECRED, as well as firsthand experiences of a person living with dementia actively involved in research and a facilitator of the ECREDibles- a group of people living with dementia who share an interest in research- the authors emphasize the critical importance of prioritizing the wellbeing of individuals with dementia in research endeavors (Warran et al, 2023 ). This highlights the necessity of balancing the importance of pretesting with the potential burden traditional approaches may impose on a vulnerable population of individuals with DLB.…”

Volunteering as Meaningful Activity for People Living with Young Onset Dementia: A Thematic ‘Co-Analysis’

“…This finding is especially pertinent to volunteers of an activist orientation, as considerable work needs to be done in addressing dementia stigma and volunteers are liable to take on too much in their pursuit to improve things for people who come after them [43]. Volunteer activists are having to navigate their dementia symptoms alongside their voluntary campaigning and will need to ensure they strike an appropriate balance for them and create spaces for rest and recovery [43,44]. Often people with young onset dementia are not believed about their diagnosis or that they are struggling due to the outward presentation of them looking "normal", which is demonstrative of how stigma can impact on how people think dementia should look [6].…”