Enhancing inclusivity in dementia research: reflection on the use of join dementia research platform

Introduction: Conducting research with people living with dementia (PwD) necessitates navigating complex ethical and logistical considerations, primarily influenced by PwD’s gatekeepers. These gatekeepers can either facilitate or hinder PwD’s engagement in research, potentially impacting the quality and inclusivity of the research. The Join Dementia Research (JDR) platform is a GDPR compliant online self-registration service that presents an opportunity to mitigate gatekeeper barriers, enabling PwD to self-express their interest in participating in research.

Aim: To reflect on the use of JDR platform in fostering a more inclusive and autonomous recruitment process for dementia research.

Method: A narrative study was conducted between 2020–2021, utilizing the JDR database for recruiting PwD. A total of 145 PwD were contacted through the platform to participate in the study. Of which, only two PwD were from the (Black and Minority Ethnic) backgrounds.

Results: Of the contacted individuals, 13 PwD joined the study. However, 28 family representatives responded on behalf of PwD, declining participation without soliciting PwD’s input.

Discussion: The JDR platform seems to empower PwD by affording more control over their decision to participate in research, extending the opportunity for engagement beyond geographical boundaries. However, challenges persist regarding the platform’s inclusivity. The implied prerequisite of internet literacy and access may inadvertently exclude individuals with comprehension or technological barriers, hence limiting the diversity of participants. Additionally, there is a notable underrepresentation of PwD from the BME background.

These findings underscore the necessity for a more holistic approach to recruitment strategies in dementia research as well as to broaden participant’s diversity.

Impact: JDR is a platform that can potentially enable inclusive recruitment in dementia research. However, an alternative strategy is still needed to fully support those who are not registered on the platform.