Real stories

Fiona Carragher: My first year working with the Research Network

First impressions 

This time last year I grasped the exciting possibility of moving out of the NHS, where I had worked as a Clinical Scientist for 25 years, to join Alzheimer’s Society.

I remember clearly coming to the offices in Crutched Friars for my first set of interviews; nervous and slightly daunted. 

I was given a piece of paper with a set of questions and asked to draw on my personal experience to speak to the panel, made up of members of Research Network volunteers, on the importance of patient and public involvement.

Having always worked in partnership with patients and the public, I was struck on that first encounter by how important this was to the ethos of the Society…. this was definitely a place I wanted to be.

​

The story so far

For two decades, Alzheimer’s Society's Research Network of dedicated volunteers have been driving change in dementia research, working with researchers to make a unique and valuable contribution to every stage of research.

We now have over 350 volunteers across the UK who use their personal experience of dementia to ensure research is relevant, credible and maximises the impact it has for everyone affected by dementia. 

From reviewing all our research grant applications to mentoring and supporting researchers during their projects, our volunteers have held a mirror up to the research community and ensured we put people affected by dementia at the heart of everything we do.

Impact across all our work

The importance of the lived experience of people affected by dementia is vital in all our work and I have seen at first hand this year how it can shape our programmes and products. 

For example, our Innovation team’s latest sprint project aims to ensure people with dementia have the immediate support they need to leave hospital safely and without a delay. As part of the Investigation phase, ten Research Network Volunteers kindly shared their personal experiences of being discharged from hospital. 

Everyone had a unique story to tell, but there were some common challenges which will be front of mind as we start creating possible solutions in the coming weeks. These include a need for improved communication between hospital staff and families, and lack of service provision in the community for people returning home from hospital. 

Our volunteers have been invited back to flex their creative muscles at ideas workshops, alongside a range of health and social care professionals. 

Our research programme 

Patient and public involvement in research has become increasingly important over the past few years and is now a critical part of any research programme.

Alzheimer’s Society and the Research Network of volunteers have pioneered this approach, not just a tokenistic, box-ticking exercise, but a meaningful partnership between the academic community and those that will benefit from their knowledge and work.

For me this is the epitome of #UnitedAgainstDementia; working, collaborating, sharing knowledge so that ultimately, we make a difference for everyone affected by dementia both today and in the future.

My personal experience over the past year has shown this writ large. It is always a joy to meet members of the network; your experience, wisdom and words of encouragement have made it undeniable that Alzheimer’s Society is definitely the place for me.