Real stories

Lyn’s story: Why I joined the Research Network

What is the Research Network all about?

If you have personal experience of a dementia are or have been a carer for someone with a dementia you already have a wealth of knowledge about dementia and its impact.  

Scientists use evidence-based research to establish cause and effect. But they often miss or have no understanding of the personal and practical implications of dementia in their research. 

Those of us who understand dementia play a vital helping the Alzheimer’s Society steer research in the right direction.

The collaboration between volunteers and scientists provides a platform of understanding of each other’s role in the research process.

How I found out about the Research Network

My involvement as a Research Network Volunteer was accidental in many ways and gradual.

In 2006, my Dad was diagnosed with Alzheimer’s disease and vascular dementia.  Not knowing anything about Alzheimer’s, at the time I had no idea what we were going to do. 

I had vaguely heard of the Alzheimer’s Society so decided it might be a good idea to join.  I received a magazine every month and read it with interest.  

One day there was an article in the magazine about becoming a Research Network Volunteer by Barbara Woodward-Carlton.  I discovered she lived near me in North Yorkshire so decided to give her a call and arranged to meet her.

Was I qualified?

I didn’t think I would be qualified to be a Research Network Volunteer as I am not a scientist and had no scientific experience. But, as Barbara said at the time, ‘you have a wealth of knowledge from your experiences of your father’s illness’.  

At the time I didn’t want to commit to too much as I was looking after my Dad and studying for a degree with the Open University.  

That didn’t matter.  All I was required to do was review some grant applications.  I didn’t have to review them all just what I could manage.  Barbara reassured me that my opinion was what mattered and I wasn’t to worry about ‘saying the wrong thing’.

I began to review applications on a regular basis.  The more I reviewed the more confident I became and loved it.

After my father died in 2014, I began to monitor research that had received funding. This meant I could go along, with two other colleagues, to a review meeting of a particular piece of research and hear all about it.  

This is a way for the Alzheimer’s Society to show accountability for the funding they grant and also helps us, as volunteers to see and hear about research taking place.

Rewards

I can honestly say this is the most rewarding work I have ever done.

There is a great deal of satisfaction in being able to contribute to the direction of research undertaken by Alzheimer’s Society.

You can take on as much or as little as you want, there is no pressure.  

There is a great support network and you will meet many interesting people.  Why not try and join up today.