Grey literature scoping review: a synthesis of the application of participatory methodologies in underrepresented groups at an elevated risk of dementia

Abstract

Background Diverse populations are more exposed to life course influences on adverse ageing, including brain ageing. Research into dementia in the United Kingdom inadvertently lacks diversity. Therefore, there is a need for more inclusive dementia research, developed in a way to ensure those who are currently missing from standard health data are represented. This may warrant the use of co-creation (emphasising collaborative creation and solution development), drawing on participatory methodologies in healthcare, research and service delivery.

Methods This study presents a scoping review of grey literature using Arksey and O’Malley’s methodology. Literature was sourced from the Patient Experience Library and supplemented by a targeted Google Scholar search, employing snowball sampling to identify additional materials. The search strategy incorporated keywords such as “marginalised”, “vulnerable”, “disadvantaged” and participatory terms like “co-creation” and “co-design”. Two reviewers independently screened and extracted key higher-level attributes (e.g., type of report, purpose of the activity (design), participating stakeholders/target populations) as well as data related to “co-creation process dimensions” and “participation levels”.

Results Our review identified 30 grey literature reports on participatory methodologies among underrepresented groups living with or at elevated risk of dementia, covering diverse locations within the United Kingdom. The reported activities aimed to enhance healthcare and social services through stakeholder participation. Our findings highlight a focus on multi-stakeholder collaborative action as the dominant co-creation dimension identified. However, there was also a notable absence of more inclusive methodologies, with consultation being the most commonly used approach.

Conclusions Our scoping review highlights the value of grey literature in understanding participatory methodologies for underrepresented populations at risk of or living with dementia. It reveals there is still a potential need to shift from mere consultations to sustained partnerships, promoting meaningful inclusion and greater ownership of (health) outcomes among these populations.