Join Dementia Research was launched two and a half years ago with the ambition to accelerate dementia research, helping researchers find the right people for their studies more quickly, and empowering patients and the public to find studies they wanted to take part in and get involved.

We caught up with Dr Ivan Koychev, who is an NIHR Clinical Lecturer and the Principal Investigator on the PREVENT Dementia study at Oxford Health NHS Foundation Trust. PREVENT Dementia was one of the first studies to open on Join Dementia Research. It’s looking for 750 participants, across the four UK sites, with 64 of these from the Oxford region. The Oxford site opened in May 2017 and of the 29 people who have already agreed to take part, 40% found out about the study through Join Dementia Research.  

The PREVENT dementia study

Dr Ivan Koychev

Recent evidence suggests that the biological changes which lead to dementia may start earlier than the point when most people first notice symptoms. The idea behind PREVENT Dementia is that if you can identify the very earliest stages of neurodegenerative disease before dementia, then specific interventions could be developed to slow the progression of these diseases and therefore delay or prevent the onset of dementia.

The study aims to identify some of the earliest biological or cognitive signs of neurodegenerative disease and relate these to a range of risk factors and their interactions. This includes modifiable risk factors, which are those a person could potentially change (such as lifestyle, diet and blood pressure) and non-modifiable risk factors, which includes family history and genetic factors that a person cannot change. In doing so the team will look at how modifying risk factors could impact disease progression many years before the expected onset of dementia. These risk factor interventions could, for example, include reducing risk of diabetes, dietary changes or improving brain health through exercise and weight loss. The study team are looking for people aged 40-59, who do not currently have dementia to take part.

Dr Koychev explains:

“There has been is a lot of retrospective research suggesting that biological changes in middle aged people could increase the risk of developing dementia in later life but we need more long-term, forward-looking research. Researchers today have a good idea how modifiable (such as diabetes, diet and exercise) and non-modifiable risks (such as family history of dementia) interact in middle age but never really had the direct evidence to support this. The PREVENT Dementia study is looking to address this gap in the knowledge.”

What does taking part in PREVENT involve?

The study itself involves a visit soon after enrollment and then another two years, though the study team intend to apply for funding to allow follow up visits every five years indefinitely. Participants will have a thorough health examination, with physical assessments, blood tests, brain scans, lumbar punctures (to examine proteins in spinal fluid), and a suite of cognitive tests. These tests are then repeated at subsequent visits to look at what has changed between visits.

Georgina Shomroni, 54, from Oxford, has recently enrolled in the PREVENT Dementia study and is thoroughly enjoying taking part:

“The first day involved a huge variety of tests – The PREVENT Dementia study seems to measure every aspect of the brain. There were all sort of health tests, as well as a variety of verbal and non-verbal cognitive tests. The research team are very good. They want to make sure you understand everything, that know exactly what’s going to happen and to be sure you are happy to proceed. Taking part in the PREVENT dementia study was brilliant. I’m really pleased I got involved.”

When might it be possible to put learning into practice to help people with dementia?

For this kind of study, the real value is in the long term follow up and seeing changes over time, so it will be a while before the research team’s analyses of the data will be definitive enough to advise the public what to do and to help clinicians assess their patients’ risks. Before that point however, the PREVENT Dementia team have been leading public engagement work to raise awareness of the ‘Disease before Dementia’ concept that is crucial for clinicians and the public to understand in anticipation of the study’s findings.

The expectation is that as the study progresses, the team will develop more and increasingly accurate knowledge, which will inform the design of new interventions using randomised control trials, which can be run both within the PREVENT Dementia Programme as well as in other associated specific trials. In these next trials, for example, one group could get specific advice on controlling and influencing physical, nutritional and psychological lifestyle factors and the other group would get much more generic advice (which would mirror current advice). It would then be possible to see if changing these modifiable factors could in fact delay progression of the diseases that lead dementia.

Making a difference to patients and researchers with Join Dementia Research

When it comes to finding research participants for PREVENT Dementia, Join Dementia Research has been very useful. Working like a matchmaking service, members of the public enter details about themselves (e.g. where they live, their age, information about a dementia diagnosis if they have one), and researchers add their studies and details of the type of people they are looking for. Registered volunteers can then find out which local studies they match to and after contact with the research team, can decide whether or not to take part in that particular study. This is making it easier for people to get involved in studies, and quicker for researchers to find the people they need to deliver their vital research.

Dr Koychev has found Join Dementia Research very successful for the PREVENT Dementia study:

“Join Dementia Research is great – it’s working really well. It’s one of the main recruitment tools for the PREVENT Dementia study at the Oxford site and has helped us find highly motivated people all in one place. What really helps is being able to narrow down the search to people living within a manageable distance from the study site. With other databases you may find people who are interested in taking part, but the distance is too far for them to travel and they may well turn down the study.

“I, as a researcher, am very grateful to those who volunteer to take part in our studies. Now is a very exciting time for research. Where we are today in terms of what we know about dementia is because of people’s commitment to research and volunteers taking part. And thanks to the people taking part in dementia research studies today, this work will translate into meaningful outcomes for people with dementia in the future.”

Are you interested in helping researchers and taking part in dementia studies? There are over a 100 studies around the UK on Join Dementia Research currently looking for people like you to take part in studies. Sign up today to keep up to date with the latest studies you can take part in.

If you are a researcher, Join Dementia Research could help you meet your recruitment target faster. Take a look at our information for researchers to see if it may be suitable for your study.