Pathways to participation – a scoping review outlining barriers and enablers to participation in dementia research

BACKGROUND: Ongoing participant recruitment challenges in dementia research highlight the need to understand public perspectives on research participation. This scoping review explored existing literature on barriers and enablers to the recruitment and retention of participants in dementia studies. METHODS: A scoping review was conducted in PubMed and PsycINFO, following the Arksey and O'Malley framework, using a keyword profile informed by a pilot search (full protocol available at osf.io/n8j4u). Abstract and full text screening were performed in duplicate and data were extracted using predefined criteria. Reported barriers and enablers were grouped into overarching themes. A panel of people with dementia and carers subsequently shared their perspectives on recruitment challenges and reflected on the review findings. RESULTS: Forty-five publications were included for narrative synthesis, representing 112,011 participants (pooled mean age = 69.3 years; 64.8 % female). Most studies originated from the U.S. and focused on clinical dementia research, with an emphasis on recruitment rather than long-term retention. Barriers were grouped into eight themes: mistrust; fears, worries and concerns; awareness; beliefs and attitudes; practical and logistical constraints; study-related factors; informational barriers; and barriers related to carers and support systems. Enablers included internal motivators (e.g. altruism) and external facilitators (e.g. financial compensation or flexible scheduling). CONCLUSIONS: While significant research gaps remain, many barriers to participation in dementia research appear modifiable. Targeted actions addressing these modifiable factors may enhance recruitment and retention, which may strengthen the inclusivity and impact of dementia research.