The Dementia Research Advisory Team (PPI)

The Dementia Research Advisory Team

Pictured L-R: Mary McIntyre, Ray Cregan, Ciara O' Reilly, Máire-Anne Doyle, Padraic Egan, Kathy Ryan, Laura O' Philbin, Helena Quaid, Michael Foley, Kevin Quaid, Una Caulfield, Helen Rochford Brennan

The Dementia Research Advisory Team is a group of people living with dementia and carers 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 research funding decisions.

The Dementia Research Advisory Team is supported by The Alzheimer Society of Ireland.

One of Alzheimer Society of Ireland’s strategic aims is to develop and amplify the voice of the person with dementia and create a platform to enable voices to be heard. As part of our Research Strategy 2017-2020, ASI is committed to developing PPI in research.

What is Person Public Involvement (PPI) in dementia?

Person Public Involvement (also known as Patient Public Involvement) occurs when people with dementia and carers work in partnership with researchers in setting priorities, planning and managing research studies, as well as in disseminating findings and putting results into practice. It is not about collecting data, but about offering advice, insights, and contributing to research projects in the same way other collaborators would. Some examples of PPI might include:

  • Setting research priorities
  • Being a collaborator on a grant
  • Co-designing study materials and information
  • Planning research studies
  • Putting results into context and practice
  • Sharing information about the results of the study

Involvement is generally from the very beginning of the research, with members of the Dementia Research Advisory Team having authentic input into all stages throughout the study. PPI is not about recruiting participants, it is a way to ensure that the real life experiences are considered in designing and implementing research. It means giving people with dementia and their carers a voice in research so that they can express the needs that matter most to them.

 

 

Join the Dementia Research Advisory Team

If you are a person living with dementia or a carer who would like to learn more about joining the Dementia Research Advisory Team, please get in touch with Laura O’ Philbin by mail laura.ophilbin@alzheimer.ie or phone (085 871 6533).

No experience necessary!

Useful Resources for Researchers and Clinicians

  • Alzheimer Europe’s position on involving people with dementia in research through PPI (patient and public involvement) Click here
  • Our reflections of Patient and Public Involvement in research as members of the European Working Group of People with Dementia PPI Alz Europe
  • Resources and briefing notes for researchers from Involve UK (The UK’s leading public participation charity) Click 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
  • Qualitative research and patient and public involvement in health and social care research: What are the key differences? – Authored by Bec Hanley, Kristina Staley, Derek Stewart, Rosemary Barber, August 2019. Click here
  • Dementia Research Blog – Doing PPI on my PhD Project. Click here

Why have PPI in research?

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

The below is from a conference presentation given by Dementia Research Advisory Team member Kevin Quaid:

  • 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.

 

Work with the Dementia Research Advisory Team

If you are researcher and would like to engage with members of the Dementia Research Advisory Team on a project, please complete THIS FORM and return it to laura.ophilbin@alzheimer.ie

The Dementia Research Advisory Team has developed Guidelines for Engagement. These guidelines were written by the Dementia Research Advisory Team with the support of the Alzheimer Society of Ireland and PPI Ignite at Trinity College Dublin. Please read these before completing the engagement form.

 

We are grateful to Genomics Medicine Ireland and PPI Ignite TCD for their continued support with developing our PPI activities.

 

     

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