Increasing Nationwide Participation in Dementia Research

This is the second in a series of interviews carried out by a group of civil servants that have dedicated time to raising money and awareness for dementia via ‘The Fund’, a Fast Stream initiative. James Lovell, Department of Health, interviewed Piers Kotting, the Programme Director for Join Dementia Research, a digital platform that aims to connect potential participants with research projects

My name is James Lovell and I am a Fast Streamer in the Department of Health. Since starting with the Civil Service, I have become very active in raising funds for Alzheimer’s Society.

Raising funds to support dementia research and to support people living with dementia is a huge challenge. However, it is definitely not the only one. In order to support people to live well with dementia, it is extremely important that people in our society are aware both of what dementia is as well as what it means for the person and the people around them.

To raise awareness around dementia and provide some insights into current research efforts, I interviewed Piers Kotting whose efforts focus on increasing the public’s engagement and participation in dementia research.

Can you give us some background to how you ended up in your current role and what your role entails?

My first ever job was at 17 working in the NHS as HCA/Grade A nurse at a hospital in Hertfordshire. On my first day I looked after an elderly lady who had dementia. This was an experience that has stayed with me and was a factor in wanting to take on my current role. From University I went to work in financial services recruitment, returning to the NHS in 2002, initially as an assistant psychologist in a South London older adult community mental health team, and then through the Gateway to Leadership programme, working as a hospital manager at Kings College Hospital. In 2005 opportunity came up to set up the Dementias and Neurodegenerative Diseases Research Network (DeNDRoN).

My current role is supporting the NIHR National Director for Dementia Research across the portfolio of NIHR dementia activity. One of our key projects – as part of the Prime Minister’s 2012 challenge on dementia – is Join Dementia Research. We know that a lot of people want to be involved in dementia research but only 20% would know how to get involved. My role is working out how we fill these gaps and innovating how we can collect data.

In 10 years I would hope to see an increase in participation across the NHS. A goal I am working towards in getting 100,000 people to sign up to JDR by 2018

Can you describe how Join Dementia Research got started and its objectives?

Join Dementia Research came about from people affected by dementia and researchers working together to try to make it easier for people to take part in studies.

One difference between dementia and cancer is the service pathways are totally different. Every single cancer case is reviewed by an MDT (Multi-Disciplinary Team). The whole structure of MDTs is coordinated across cancer services. Dementia services are not organised in this way, and once you receive a dementia diagnosis you are typically referred back to your primary physician who sees you perhaps once a year, unless they refer you back with other problems.

So we identified a need to be able to engage with people directly, and not just for research recruitment to be driven from within the NHS. We have set up a public facing system with other partners, in particular the main dementia charities, to be a platform for members of the general public to sign up for research. The system was launched nationally in February 2015.

Have there been any problems along the way?

The requirement for Join Dementia Research was driven bottom up – being identified by researchers and people affected by dementia. It has taken a long time, like all things that are innovative or different and not driven by policy, to coalesce the right people, to get support and to generate the necessary investment to deliver the idea into practice.

It also takes time to change practice.  The existing system supports particular types of operating practice that Join Dementia Research challenges.  Even when you can demonstrate improvements it isn’t easy to change behaviours in practice.

Have you seen a change in culture or attitude towards dementia and research into in the last couple of years?

There has definitely been a cultural change in dementia. 10 years ago it was very much less talked about, much in the same way that cancer was once the ‘C word’. There has been a massive shift in public opinion and the way it is spoken about. There has also a shift in policy across successive governments from Labour onwards, going from Ministerial to Prime Ministerial interest.

In terms of the NHS there has been a vast change in dementia research. We have increased the number of NHS services supporting dementia research from around 40 in 2005 to more than 200. We’ve gone from less than 2,000 people taking part in dementia studies each year 10 years ago to more than 20,000 now. There is now a highly trained, experienced, dedicated workforce that supports dementia research.

From the research side of things are you seeing more and more studies signing up for research participants?

We launched it with a small number of studies, in 2014. Throughout 2015 we made a big effort to get as many portfolio studies onto the system as possible, so the speed of new studies coming on has now slowed down. There is still some work to do with researchers and research teams to sell the benefits of using the new system.  Looking across the country you can see that some regions have embraced it more fully than others. Of the 15 NIHR Local Clinical Research Networks, the three leading regions are recruiting 50%, 40% and 30% of their participants through JDR, but there are 6 regions recruiting less than 10%.

Encouragingly we are now seeing increase numbers of PhD students approaching us to recruit participants, hearing about the JDR through word of mouth.

Does the research community want people who currently have Dementia? 

Commercial trials at the moment are predominantly looking at early stage Alzheimer’s. However there is a trend towards researching in earlier stages of the disease.  It is thought that the underlying pathology of Alzheimer’s may start some 15-20 years before onset of symptoms, so there is a move towards trialling interventions earlier in the course of the disease.  There is also an increasing interest in prevention, which means engaging a different group of people in the research.  Join Dementia Research will hopefully play a key role in this area, and we have had great uptake in people without dementia who are over 50.

Are there any issues around capacity to consent?

Capacity is clearly a big issue in dementia research. As well as being able to sign up for yourself, we have taken the approach with Join Dementia Research that close relatives can sign up on behalf of someone they care for. The thing to remember about Join Dementia Research is that people aren’t consenting to take part in research.  People are providing permission to be contacted about research.  The process for gathering informed consent for the specific study is governed by the normal good clinical governance framework.

How positive are you about the future of dementia research? 

The noise feels very positive. Much more than 10 years ago. There has been increased discovery and pace of investment with increased political and public focus.

However I’m not sure there will be a cure in the ‘silver bullet’ sense. As in the case of diseases like breast cancer, research has led to identification of multiple types of the cancer. Medicine has become personalized and targeted.

What you be optimistic on the research side?

I am optimistic that over the next few years you will see it becoming easier to get the right people at the right stage to be involved in research. It will become easier to get the right population we want using genomics and proactively engaging people.

Currently we have a mobile app in development, to aid public engagement. We are also looking at how the NHS engages with JDR. We are working to create a map of the different touch points to see where we can aid each other.

Ultimately my ambitions for this way of working go way beyond dementia.  I would like to see everyone coming through NHS services offered the opportunity to opt into this type of research register – call it “Join NHS Research” if you like! We need to move to a point where it isn’t arbitrary whether a patient is offered an appropriate research studies, and where it is easy to join research. In doing so it would generate tens of billions of pounds in inward investment through the life sciences industry and deliver major health benefits for the country.

If the work of Join Dementia Research has interested you please click here to find out more about the project or sign up for research.

If you are interested in learning more about dementia and getting involved, one easy yet effective way that you can is by becoming a Dementia Friend. It simply requires attending a short, informational session that will give you the knowledge to help yourself and others better understand dementia. To find out more, please visit

The application windows for the EDIP and SDIP are now open! Please click here for more information

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