Patient and public involvement

People affected by dementia can make a unique and valuable contribution in every stage of research, helping to ensure we fund the highest quality, relevant research on dementia. 'Nothing about us, without us.'

Volunteers changing research for the better

Alzheimer’s Society has championed the active involvement of people affected by dementia in research for nearly two decades through our Research Network volunteers. 

‘She feels like part of our team…  She brings the wind behind us, supporting us to have an approach which values the experience of people directly affected by dementia.’ - Murna, dementia researcher.

Seeing the impact

We have always been aware that researchers and volunteers value and enjoy collaborating together to drive forward dementia research. We have now gathered evidence to demonstrate the impact patient and public involvement (PPI) has had in recent years. 

Our Research Network volunteers and funded researchers told us that PPI has had a positive impact on volunteers, researchers, research and on Alzheimer’s Society. We also learnt how we can improve PPI to make it easier for people living with dementia to be involved.

Find out more from our short video

Learn more about the impact of PPI from the full report

Unite against dementia

Join us to support and improve research for all those living with dementia today and in the future. 

  • Be part of our Research Network – for people with dementia, carers and former carers. No scientific knowledge or research experience is required.
  • If you are a dementia researcher, email our team to discuss working with our PPI volunteers who have an invaluable knowledge and direct experience of dementia. Learn about research proposal development support from our Research Network.
Information

Patient and public involvement (PPI) is the philosophy that research is carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them.

Research

Our Research Network are people with experience of dementia who play an active role in our research programme. Hear the stories of some of our Research Network volunteers.

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