Research Network volunteers and researchers

Dementia research isn’t just for researchers: John and Colman's stories

This year, we are celebrating 20 years of our Research Network. Our volunteers – who all have a personal experience of dementia – have helped us to decide which research we fund and partnered with researchers across the UK.

There are thousands of people across the UK with an experience of dementia, whether living with the condition or as a carer.

As a Research Network volunteer, you can use your experience to ensure our dementia research tackles the issues that could transform lives.

Making big changes 

For the past 20 years, our dedicated Research Network volunteers have been making a huge impact.

In the early 2000s, 25 per cent of people with dementia were prescribed antipsychotics. But research showed these drugs weren’t effective and in fact could have harmful side effects. 

Our Research Network volunteers worked with researchers from King’s College London to make a real change. Together, they brought this major health issue to the forefront of the political agenda. They worked with the Department of Health to create a best practice guide, now widely used nationally and internationally.

Since then, there has been a 60 per cent reduction in the prescribing of antipsychotic drugs for people with dementia.

John's story

In research, collaboration is key. Each of our research projects is supported by a volunteer with a personal experience of dementia.

John Lanyon is a Research Network volunteer who cared for his mother. He was partnered Katrina Moore, an Alzheimer’s Society funded PhD student.

John was also the co-founder of KareInn, a company that develops technology to improve care in elderly care homes.

Katrina has developed an innovative smartphone app to diagnose frontotemporal dementia at the very earliest stages, and John was able to support her brilliant research.

Katrina’s research could take us a step closer to a new treatment for dementia. If we can identify people with the condition long before any symptoms appear then perhaps treatments will be more effective. 

Sharing personal experience of dementia and other skills and knowledge is invaluable to researchers, like Katrina, driving dementia research forward.

Colman’s story

Colman cared for his mother who lived with Alzheimer’s disease. He recently joined the Research Network to play his part in driving dementia research forward. 

'Researchers would normally apply for grants. You review and say exactly why you think it’s essential for them to fund that research.'

'Everyone has a role to play. There are people with dementia, or carers, family or friends.'

Colman has been supporting researchers based at University College London leading a programme to support people to reduce their risk of developing dementia by making lifestyle and behaviour changes.

As the number of people in the UK with dementia is set to rise to 1 million by 2021, it's essential we understand how best to prevent the condition.

Your experience is invaluable 

These are just a few stories from our Research Network volunteers about how they are supporting dementia research.

We’ve come a long way in 20 years, but there’s still a long way to go. We need to find a cure and make sure people with dementia get the care they need.

So, if you have a personal experience of dementia and want to transform the lives of everyone affected by dementia, unite with us and join our Research Network.

Become a Research Network volunteer

No qualifications or scientific knowledge is needed. If you have personal experience of dementia as a carer, former carer or person with dementia, you can help and support our research. Anyone over the age of 18 can sign up. 

Sign up today Email for details
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Do join us this year for our Memory Walk AT The British Ironworks at Oswestry let us walk together to walk towards a cure. Please can you ask your local members in Shropshire.

Join us for the Humber Bridge Memory Walk 29 Sept
Team Johnnie is gathering momentum and if we can all do our bit, we are helping to stamp our Dementia for future generations. Tku. Barbara

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