The Dementia Research Advisory Team (PPI)

The Dementia Research Advisory Team is a group of people living with dementia and carers/supporters who are involved in dementia research as co-researchers. These Experts by Experience influence, advise, and work with researchers across Ireland.

In addition to being involved in various research projects across Ireland, team members come together 3-4 times per year for capacity building workshops. Members also contribute to The ASI’s research funding decisions and review process for tenders.

If you are a person living with dementia or a family carer/supporter who would like to learn more about joining the Dementia Research Advisory Team, please get in touch with Cíara O’Reilly by emailing [email protected] or phoning 085 870 9671.

We welcome members from diverse groups including

• The LGBTQI+ community;
• The Traveller community;
• Black Asian and Minority Ethnic Groups.

No experience necessary!

Information for potential members: CLICK HERE

PPI improves research. People with dementia and carers can offer unique insights and viewpoints that improve research projects.

• We have unique perspectives and research ideas that might not already be written or talked about. We live this every day so we see and experience things that researchers and academics don’t see or might not know about. We can bring these insights to the table and help researchers to do new and exciting work
• We can help set research priorities and put the research question into context. Research funders want to know about how research will translate to real life. Who can provide this information better than us? We are ‘real-life’. Research funders in Ireland include the opinions of the public when deciding what applications to fund. These people want to see how the research will help those that it’s about.
• Designing and planning research studies. We can provide insights and advice that will make the experience of taking part better for participants, which will help keep participants in the studies. These could be anything from times or venue, or about how to approach people about certain difficult topics they might find upsetting.
• Improving the way the results are shared by coming up with ways to best tell the public about the research in easy-to-understand terms. The public want to know what happens in research but it needs to be communicated in a way that is easy to understand and accessible.

Published Works:

The members of the Dementia Research Advisory Team have been recognised for their contributions to research in a number of publications. Please click through the below to read some of their work:

• “We will tell everyone!” Capturing the impact of public and patient involvement in music therapy and dementia research through songwriting 
• Freedom and loneliness: dementia caregiver experiences of the nursing home transition
• “Follow the Musical Road”: Selecting Appropriate Music Experiences for People with Dementia Living in the Community

Academic Posters

They have also been invited to share a number of academic posters over the years:

Alzheimer Disease International 2022

Irish Gerontological Society 2019

Conference Presentations

Alzheimer Europe Conference Oct 2024

DRNI / ASI Dementia Science for the Non Scientist Sept 2024 Panel Discussion

ADI 2024

Liverpool Dementia & Ageing 5th Annual Conference Oct 2023

ASI / DRNI Knowledge Exchange Seminar Feb 2023

ADI 2022 “Meet the Experts by Experience” Panel Discussion. CLICK HERE to watch the recording.

Engaging Dementia Conference 14th Annual Conference 2022. The video recording is available HERE.

• The Dementia Journal has published a special issue on PPI: Patient and Public Involvement in Dementia Research: Moving from Proving to Improving. The issue can be accessed here. You may need to use an institutional log in to access this work Click here

• Article: Minding the gap: identifying values to enable public and patient involvement at the pre-commencement stages of research projects. Click here
• Our reflections of Patient and Public Involvement in research as members of the European Working Group of People with Dementia Click here
• Alzheimer Europe’s position on involving people with dementia in research through PPI (patient and public involvement) Click here
• Dementia Research Blog – Doing PPI on my PhD Project. Click here
• Qualitative research and patient and public involvement in health and social care research: What are the key differences? – Bec Hanley, Kristina Staley, Derek Stewart, Rosemary Barber, August 2019 Click here
• Resources and briefing notes for researchers from Involve UK (The UK’s leading public participation charity) Click here
• Involvement Cost Calculator (this is a UK tool) Click here

We are grateful to the PPI Ignite Network for their continued support with developing our PPI activities.

Check out our document clarifying the work and positions of the groups supported by The ASI Research & Advocacy Teams

April 2025: Partnering with Purpose: Embedding PPI in Postgraduate Health Research

The Alzheimer Society of Ireland (The ASI) has a long-established reputation for centering the sustainability of knowledge in its research work. This commitment is evidenced in the tailored support and advice provided to Early Career Researchers who carry forward the insights of established experts while integrating new methodologies and priorities. This ensures the continuity of research and bridges generational knowledge in dementia and health research.

A key tenet of the research landscape is the enshrinement of the lived experience, ie, embedding the principles of Patient Public Involvement (PPI) in all aspects of the research process, improving relevance, quality and real-world applicability. In addition to its internal PPI focus, the experts-by-experience panel that is the Dementia Research Advisory Team (DRAT), The ASI is proud to have collaborated with PPI Ignite and cross-sector stakeholders to develop a Postgraduate Introduction to PPI Module. The purpose of this interactive workshop-based module is to introduce postgraduate students to the ethos and practices of meaningful and authentic PPI in health and social care research.

Now available to postgraduate students in University College Cork and Royal College of Surgeons, Dublin, members of the Dementia Research Advisory Team, Brenda Buckley, Kevin Cullen, Nuala Paley and Kevin Quaid were delighted to co-deliver the recent workshop PPI: Partnering with Individuals. Drawing on their personal experience as PPI Contributors, the DRAT members shared insights as to why individuals become involved in PPI in research, some of their expectations and motivations when partnering with a researcher, and what makes for good and bad PPI. Ultimately, they stressed to the students the fundamentals of successful PPI engagements and how these are always underpinned by ongoing open and respectful communication.
 

The ASI’s Research Project Officer Cíara O’Reilly was also on hand to co-deliver workshop 4 Partnering with organisations for PPI in Research, outlining the importance of PPI from an organisations’ perspective and the spectrum of resources available within charity partners to support researchers. Sharing insights into the range of organisations’ goals, needs, and expectations when partnering with researchers for PPI, the engaging presentation also highlighted the mutual benefits of PPI, including improving public research literacy and trust through enhanced research communication and transparent, respectful collaborations.

The DRAT members are looking forward to the final interactive workshop where the students will demonstrate their learnings from the module through collaborative presentations.