Spotlight on the Dementia Research Advisory Team: Empowering Lived Experiences in Dementia Research

Our Research Project Officer, Ciara O'Reilly, highlights the incredible work of The Dementia Research Advisory Team (DRAT). Read on to learn how the DRAT, as a dedicated Person Public Involvement (PPI) panel, plays a crucial role in ensuring that those with lived experience of dementia are at the heart of the research process.

The Role of Person Public Involvement (PPI) in Dementia Research

Person Public Involvement (PPI) has become a cornerstone of dementia research worldwide. In essence, PPI is research carried out with or by members of the?public?(ie, in collaboration with researchers or indeed PPI-led) rather than to, about or for them.?It is the practise of ensuring the lived experience of a condition is actively included throughout all stages of a research project. In Ireland and internationally, PPI as an ethos in dementia research has been bolstered by research institutions, patient organisations and research funders recognising its value and committing to its meaningful inclusion in research funding and development.? ?

Who is the Dementia Research Advisory Team? ?

The Dementia Research Advisory Team (DRAT) is The Alzheimer Society of Ireland’s (The ASI) dedicated PPI panel. Established in 2019, the group is made up of people living with dementia and family caregivers – all with a passion for creating and engaging with impactful research. The members of the DRAT influence and inform The ASI’s research and policy activities and draw on their personal expertise as individuals affected by dementia to collaborate with and advise members of the research community. Their commitment and leadership have played a pivotal role in contributing to the upward trajectory of PPI. ??

Successful Collaboration in Research?

Since its inception, the DRAT members (individually and collectively) have successfully collaborated with researchers nationally and internationally to design and implement studies that prioritise relevance, effectiveness and impact. Their work is recognised as an exemplar of how integrating diverse lived experiences enriches the research process.??

The ASI’s approach demonstrates the importance of structured PPI frameworks, ongoing collaboration, and capacity-building efforts to empower PPI contributors. Potential DRAT members are invited to the panel with the proviso that no previous research or academic background is required. Their firsthand dementia insights, both as individuals living with the condition and those with experience of providing care and support, are the most valuable contributions.

Through online meetings, workshops and fostering networking opportunities with their research peers, they actively cultivate collaboration within the wider research community.?

Research Project and Ongoing Engagement? ?

An initiative unique to the DRAT, is the recent completion of their own research project, whereby members decided on a research question, leveraged their combined expertise and conducted a robust investigation of a topic close to their hearts.

The final report of that work and its process is available to read HERE, where you will also find links to some of their other academic work and conference presentations. ?

Keep up to date with the DRAT

To stay connected with the Dementia Research Advisory Team, follow @DRAT_ASI on Twitter / X.

There, you will hear directly from members about their experiences as PPI Contributors and stay informed about upcoming opportunities to join the panel in the months ahead.?