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 Experts by Experience who wish to take part in research in a PPI capacity. The team is made up of people living with dementia and carers, and is supported by the Alzheimer Society of 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.

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.

 

 

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.

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

Why have PPI in research?

People have the right to be involved in research that pertains to them and including PPI in research is now considered best practice. Furthermore, people living with dementia and carers can contribute unique insights that improve the quality of research they are involved in.

Joining 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).

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

 

     

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