Four years on, the ALWAYs group reflect on their contributions to dementia research at Exeter.

We are a group of people with dementia and carers that we christened the Action on Living Well: Asking You (ALWAYs) group.

Since 2014 we in ALWAYS have acted as an advisory support group to the Improving the Experience of Dementia and Enhancing Active Life (IDEAL) research programme, and it has been a joy. We have brought our lived expertise about dementia to help shape project materials, given feedback on the way the research has been carried out, given our views on the way the data has been interpreted and given presentations about our role with the IDEAL team.

Recently, we got together to reflect on these past four years. We remembered some of the work we have done and thought quite deeply about how we feel about our role with ALWAYs. Has it been worth it? Has it made a difference to the IDEAL research? We concluded “yes”! It was great to think about this experience together.

We wrote an article and made a film to share our ideas about how researchers can make PPI (patient and public involvement) a thread that runs throughout their research. Our article is full of really practical ideas about how to achieve this – and our film shows how it feels in practice to become part of the ALWAYs team – a team that fills us with confidence, is full of respect and trust, and that provides a safety net of support to find our (sometimes quiet) voices.

So what our lessons for practice?

• PPI should run throughout your whole project
• It takes time and effort. Be adaptive, flexible and find ways to work differently. Build the confidence of researchers
• Make sure you cost PPI into your research bid. This includes accessible venues, lunch and refreshments, transport (and other expenses) and payments
• Build trust, communication and rapport between people who are involved and the research team. Small and informal helps here.
• Work on the principle of creating a partnership between people with dementia and carers and the research team – rather than PPI being an add-on
• Have regular contact with your PPI groups – meet face to face more than once a year, and keep in touch by email, updates and telephone calls
• Listen and give people feedback and say what has changed because of their input. Provide regular updates including study progress.

“What this project has done is helped give me confidence and when you’re diagnosed with dementia one thing it robs you of is confidence because you give up your job, you give up often friends because they desert you… it robs you of a lot of things and what projects like this do is it begins to restore your person-hood, you as a human being.”

Our article “Reflections on PPI from the ‘Action on Living Well: Asking You (ALWAYs) advisory network of people with dementia and carers as part of the IDEAL study” can be read here.

You can watch our film “Meet the ALWAYs group” here.

We created a masterclass on ‘Involving People with Dementia and Carers in Research’ and you can watch it here.

The Improving the Experience of Dementia and Enhancing Active Life (IDEAL) study funded by the Economic and Social Research Council (UK) and the National Institute for Health Research (UK) through grant ES/L001853/2. The support of the ESRC and NIHR is gratefully acknowledged.