Dementia Support Line
Sharing what we know from our Research Network
We’re sharing our experiences and knowledge in a special publication of a research journal so that research into all health conditions can benefit.
Our Research Network has led the way in ‘patient and public involvement’
Our Research Network, established in 1999, has grown to involve over 270 people with dementia, carers and former carers. With training and support, these volunteers apply their personal knowledge of dementia to improve our research.
They advise on what we should fund, design studies, monitor how dementia research is going, and make sure that any discoveries are shared widely.
Thanks to our Research Network, Alzheimer’s Society has pioneered making sure that the experiences of people affected by dementia are placed front and centre when deciding what research is done and how it is conducted.
The unique perspectives of people who are ‘experts by experience’ have had a massive impact on dementia research because of this.
This way of involving people has become known as patient and public involvement (PPI). Rather than only recruiting people affected by a condition to take part in clinical trials, it means including them in all stages of research.
What is patient and public involvement?
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.
Despite this, little has been published about the importance of PPI in dementia research. So in November 2018, we produced a special guest edition of the academic journal Dementia: The International Journal of Social Research and Practice. This coincided with the annual UK Dementia Congress and recent standards to support PPI in research from the National Institute for Health Research.
The special edition highlights the importance and benefits of PPI to the rest of the research world. A selection of articles written by our researchers and Research Network volunteers share experiences so that others can gain from their insights and be inspired to use this learning in their own fields.
Join the Research Network
Support and improve research for all those living with dementia today and in the future by joining the Research Network. It is for people with dementia, carers and former carers. No scientific knowledge or research experience is required.