Exploring Great Minds

There are over 9,000 people registered on the Great Minds register. It is a really valuable resource for research. So, in Mental Health Awareness Month we asked Dr. Ivan Koychev who runs the volunteer registry, to explain more about it.

 Ivan Koychev is a Senior Clinical Researcher at the Psychiatry Department of the University of Oxford and Research Volunteer Registry Lead for Dementias Platform UK's Great Minds initiative.

What inspired the creation of Great Minds?

 Great Minds was inspired by the recognition that the process leading to dementia starts decades before first symptoms. What we want to do with Great Minds is reach out to people and study the risks of developing dementia before symptoms appear. By connecting individuals with dementia research studies, we can begin to address this whilst promoting the importance of early detection and intervention.

How has it evolved since it was launched?

 Our priority has been recruitment. Over 9,000 participants have enrolled so far and we have access to a further 50,000 people who have agreed to be contacted about research opportunities. This is a tremendous achievement and a testament to the willingness of the public to contribute to dementia research. Alongside this, we’ve also developed a strong community interested in keeping up-to-date with the latest news on brain health research. We hold live events and online activities which are very popular.

Tell me about some of the research studies which have been conducted with Great Minds?

 We are supporting a number of projects already.  An example is an app developed to identify individuals with a high risk of developing dementia based on factors such as diabetes and smoking. The app enables these people to meet healthcare professionals remotely who can help them develop personal plans to reduce their risk of developing dementia. 

Great Minds is also studying how digital and blood biomarkers can be used detect the earliest stages of dementia.

Is there anything new happening?

We’re currently recruiting people to be involved in testing whether prescription medication for diabetes can reduce the risk of developing dementia. It’s sparked a lot of interest and a large number of volunteers.

Looking ahead, what are some of the key goals and priorities for Great Minds in the coming years?

One of our key goals is to expand the range of studies that we support. We also want to focus on increasing studies that test new ways to decrease dementia risk in ageing adults.

Finally, we want to continue collecting more comprehensive data, including biological samples to test for biomarkers of dementia and genetics. This will help us to better understand the underlying mechanisms of dementia and identify potential targets for intervention.

So, how can people join a Great Minds cohort?

 It might sound a little complicated, but it’s only a two-stage process.

First, people have to sign up to the Join Dementia Research Registry, indicating their interest in taking part in dementia research. If their profile matches the criteria for Great Minds, they will be invited to join which requires them to create a profile on our webpage www.greatmindsfordementia.uk.

 They are then notified and invited to be in studies if they match the needs for various studies such as clinical trials or observational studies.

What are the benefits of participating in Great Minds for people with dementia or their families?

By participating they are active participants in advancing our understanding and treatment of dementia. As members of the Great Minds cohort, they are invited to events where they can learn more about the latest developments in brain health research. For instance, they can hear about making lifestyle changes and adjust their own habits accordingly. Others feel strongly that contributing to research is gratifying and thus Great Minds is an excellent opportunity for those that want to help dementia science in particular.

How has Great Minds approached diversity and inclusion?

We have held engagement events aimed at recruiting participants from diverse communities and spreading the word about dementia research. Recently we ran a series of art workshops to reach into the African and Caribbean communities because they are under-represented in research. Over time we hope to remedy anomalies like this because it’s important Great Minds cohorts fully reflect the broader population.

What support is does Great Minds provide to participants throughout the research process?

We have a team available to answer questions and address concerns that participants may have about their health. For example, if participants are worried about their memory, they may be directed to speak to their doctors. The team is always on hand to provide guidance and support. This means people can be comfortable as well as informed throughout their involvement in any research.

Are there any basic guidelines to follow to keep the brain in good health?

The advice we give people to reduce risk of dementia is to stay active, intellectually and socially. It is never too early to start taking steps to protect your brain health. Taking regular physical exercise and maintaining social connections are important. People should know that dementia is not a normal part of ageing, so by taking care of their brain health, they can keep their cognitive function as they age.