The Dementia Research Advisory Team (PPI)

The Dementia Research Advisory Team

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.

If you are researcher and would like to engage with members of the Dementia Research Advisory Team, please contact laura.ophilbin@alzheimer.ie

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 on projects. This might include

  • Setting research priorities
  • Co-designing study materials and information
  • Planning research studies
  • Putting results into 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. 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.

PPI is not research engagement or research participation. It is about involvement in research. 

The Alzheimer Society of Ireland and PPI

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.

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

• 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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