Mixed-methods feasibility study of a community-based model to improve equity and efficiency in dementia research participation: protocol for ACCESS D.

Abstract

Despite national efforts to improve research inclusion, people from underserved communities remain underrepresented in dementia trials. Barriers occur at the point of initial engagement and also within the participation pathway itself, as the structure and burden of early screening procedures can discourage continuation. ACCESS D (Advancing Community Collaboration and Engagement Strategies in Dementia) aims to address these challenges by testing a community-based model that combines co-produced engagement events, low-burden research participation, and real-time support from the South Central Ambulance Service (SCAS), a trusted, community-visible National Health Service (NHS) healthcare workforce serving the counties of Hampshire, Oxfordshire, Buckinghamshire and Berkshire in Southern England, UK. ACCESS D is a 12-month mixed-methods feasibility study recruiting 100 adults aged 50-90 years with either (1) a diagnosis of mild cognitive impairment or dementia or (2) a self- or proxy-reported memory concern affecting daily life. The study will deliver between 12-18 co-produced community outreach events in non-clinical settings, supported by SCAS research paramedics and nurses. Following written (paper or digital) informed consent, participants will complete a core questionnaire and may optionally take part in one or more low-burden research opportunities designed to provide supported, first-hand experience of dementia research. Feasibility outcomes, including pathway progression and opt-in to future dementia research contact, will be descriptively summarised and stratified using National Institute of Health and Care Research (NIHR) INCLUDE-aligned underserved characteristics. Qualitative interviews and focus groups with participants and staff will examine acceptability, perceived value, barriers and enablers and implementation learning, analysed using thematic analysis and integrated with quantitative findings. The study has received a favourable opinion from the Southwest-Frenchay Research Ethics Committee and Health Research Authority approval (IRAS 361074). Findings will be disseminated via peer-reviewed publications, conference presentations and co-produced lay outputs for community partners and participants. These outputs will be accompanied by an implementation toolkit for research teams and a visual summary for potential participants.