Our first annual conference

View across the Thames from the first Prevent Dementia conference

View across the Thames from the first Prevent Dementia conference

At the end of 2016, we hosted our first annual conference at Doggett’s pub, Blackfriars, overlooking beautiful views of the River Thames. We were delighted to welcome around 50 guests, most of whom were participants in the study. We were also joined by academics involved in the study, researchers and NHS staff working on the project, as well as some representatives from the Alzheimer’s Society.

The conference included talks from many of the scientists leading work in the PREVENT Dementia project, covering everything from brain imaging, cognitive tests and social attitudes towards risk information.

Catherine Morlet, a PREVENT participant and Participants’ panel member said, “This was a great opportunity to find out about the Prevent study and to meet the researchers involved. It is encouraging to know how the data we help to generate contribute to the understanding of the disease. My hope for the project is that more participants will join the study. It would also be great if the conference grows year on year.”

Some highlights of the day include:
• Prof Craig Ritchie offering an engaging overview of the science behind PREVENT Dementia, and why our participants are so integral to the project’s success.
• News that we now plan to recruit 650 participants by spring 2018, across the four research centres – Edinburgh, London, Oxford and Cambridge.
• Learning that follow-up assessments are now being conducted in London, which will allow scientists to compare individuals’ data over time, and find differences between those with a low, medium or high risk of developing dementia.
• Dr Li Su from the University of Cambridge sharing preliminary results from the study’s brain imaging, and these will be shared more widely at events throughout 2017 – such as the Alzheimer’s Association International conference (AAIC) which is being held in London in July
• Prof Karen Ritchie providing an overview of the cognitive assessments being carried out in the PREVENT Dementia programme and explained what these tests will tell us about the earliest changes in cognitive performance.
• Dr Richard Milne from the University of Cambridge sharing results from a focus group study on how people feel about being made aware of their dementia risk.

Prof Craig Ritchie explains the science behind the Prevent Dementia study

Prof Craig Ritchie explains the science behind the Prevent Dementia study

“It was very impressive, especially to gather such a diverse audience. As a study participant, I came away feeling strongly that I was “part of the team”. I think that this team building, and the ongoing high level of communication from the study team, will continue to pay off long term.”
– Study participant

We’re feeling really positive after the conference and looking forward to what 2017 will bring to this ever expanding, critical research project.

 

Dementia risk found in air pollution and lack of vitamin D

Dementia risks have been in the headlines this week, thanks to our fascinating new study on how our environment influences the likelihood of developing the condition.

Here is Dr Tom Russ to explain how he learned that air pollution and unclean water can have lasting consequences to brain health …

Because the world is ageing, dementia is becoming a major global public health crisis. We know that there are several things that we can all do to reduce our risk of developing dementia – avoid cigarettes, stay slim and active, and control blood pressure and diabetes. These factors, plus genetics, probably explain about two-thirds of dementia risk. But this mean that a third of dementia risk remains unexplained.

Last year, we conducted research into geographical variation in dementia in Sweden and found that the risk of dementia is two-to-three times higher in the north of Sweden compared to the south. This must relate, at least partly, to something environmental.

This was why we wanted to see what had been published by other people about environmental factors and dementia. There have been a bewildering number of factors studied to date. We thought it would be helpful to produce a shortlist of environmental risk factors that have at least moderately good evidence linking them to dementia in order to guide where we should focus our research attention in the future. Our shortlist included air pollution, vitamin D deficiency, some pesticides, and electric and magnetic fields.

It is important to add that we could only show that these factors were associated with dementia. None of these studies are able to prove that any of the factors actually cause dementia. This is why we urgently need to do more research to provide this evidence. The best advice if you want to reduce your risk of dementia is still to follow the advice at the top – strive for a healthy, balanced diet, with plenty of exercise.

Our research paper is free for anyone to access and can be found here: Biomed Central .

Dr Tom Russ,
Academic psychiatrist
Centre for Dementia Prevention and Alzheimer Scotland Dementia Research Centre, The University of Edinburgh

For information on our previous work on geographical variation in dementia risk, go to: Epidemiology journal

World Alzheimer’s Day – Remember Me

On World Alzheimer’s Day, it is heartening to see the response to this year’s theme – Remember Me. Naturally, we have been talking about this in the Prevent team and during our discussion a colleague asked me about the people I remember most from my time treating people with dementia.

It brought to mind one of my earliest patients, when I was working in Melbourne, Australia. It was during the late 1990s and he was a relatively young patient in his early 60s. I remember very clearly his anxiety, his worry about what his future would hold, and of course his wife’s pain in anticipating the changes they would inevitably face. We prescribed Aricept, which had only recently launched as a dementia medication, and I did my best to offer him as much hope as I could.

Back then, it was a pivotal time in dementia research. As scientists we felt we were on the cusp of something really amazing in terms of understanding the biology of dementia. It was the start of the movement that still gives us hope that we will find a way to develop new, preventative treatments.

I have been privileged to look after thousands of patients over the past 25 years, and I can honestly say that all of them have inspired us to find a way to prevent this condition. The elderly and mentally ill are two of the most disenfranchised groups in our society, and it follows that those living with dementia can feel doubly isolated. Fighting their battle, and the promise of saving others from ever facing it, gives us our motivation to find new ways of stopping dementia in its tracks.

If you’re keen to help us, either by joining the study or fundraising for our research, please get in touch. Our new Research Engagement Manager, Anna Borthwick, would love to hear from you at anna.borthwick@ed.ac.uk.

Thank you, and happy World Alzheimer’s Day,

Prof Craig Ritchie.

New sites in Oxford and Cambridge!

senate house

Univeristy of Cambridge

We’ve reached another hugely exciting milestone for the PREVENT Research Programme this week by being awarded a new grant from Alzheimer’s Society to extend PREVENT recruitment to two new research centres based at the University of Oxford and the University of Cambridge.

We have received a huge amount of interest from people wanting to sign up to PREVENT.  However, given capacity, we have recruited the maximum number of participants possible at our first site based in West London Mental Health Trust. Following this, Prof Ritchie and the PREVENT team decided it was necessary to explore new ways to try and open up the study elsewhere to allow the opportunity for others to take part.

We are delighted to say that the PREVENT team successfully applied for a large project grant to the Alzheimer’s Society and have received an additional £400,000 to  open up two new research sites. Alongside this the PREVENT Membership scheme was also launched, and along with generous donations to the project, our University of Edinburgh centre was also opened in October 2015.

Dr Doug Brown, Director of R&D at Alzheimer's Society

Dr Doug Brown, Director of R&D at Alzheimer’s Society

On behalf of the Alzheimer’s Society, Dr Doug Brown, Director of R&D, underlined the charity’s commitment to prevention:

“Finding ways to prevent dementia is a top priority for Alzheimer’s Society. By 2025 over one million people in the UK are expected to have the condition so it is vital that we invest in research to identify risk reduction strategies. The PREVENT study is the largest study to do this in the UK and we’re delighted to be awarding them additional funding to expand it to Oxford and Cambridge.”

Professor John O’Brien from the University of Cambridge remarked:

We are delighted to have secured funding to open the Cambridge PREVENT centre, to expand this important study on investigating risk factors and early biomarker changes in those at risk of future dementia. Within Cambridge we will include state of the art imaging using high field strength imaging systems. Such studies are essential if we are to move in a meaningful way towards studies of reducing risk and, ultimately, preventing dementia.”

Professor Simon Lovestone, University of Oxford

Professor Simon Lovestone, University of Oxford

Professor Simon Lovestone from the University of Oxford expressed his team’s excitement about being involved with the programme:

We are very excited about Oxford joining the PREVENT study. This is an enormously important study and I hope that we will make a real contribution to the future prevention of dementia. To do that we really need to understand the very first signs of disease in the brain, long before dementia actually starts. This study will do that and so do the groundwork that will allow us to build a truly preventative approach to this terrible disease.”

Study lead, Prof Craig Ritchie from University of Edinburgh, added:

‘This marks a really pivotal day in helping us to understand the earliest changes in the brain that lead in later life to dementia. There remains huge public and scientific interest in our project and we are continuing to seek additional funding streams in particular through our very successful membership programme. This will allow us to extend recruitment potentially to other sites, organise a series of sub-studies and ensure we can follow up the existing cohort for even longer. We can’t thank Alzheimer’s Society enough for their commitment to prevention in general and the PREVENT project specifically.”

We were really pleased to recently share the news with the PREVENT participants. Kim Tysall, co-chair of the PREVENT Participants’ Panel said she was delighted:

 “Being a participant in the PREVENT trial and being involved in the participants panel has been hugely rewarding and has given me greater insight into the importance of this research. It is great to hear that this significant work can now continue extend to these two new sites.’

Cate Latto, co-chair of the Participants’ Panel added: 

“This is great news for Prevent and for the fight against dementia. Expansion means more participants and more data for our scientists and with every new site and participant we take a step nearer to beating this disease. It is important people feel that there are meaningful ways they can help, by getting involved with research directly through participation or by supporting in some way such as through the PREVENT Membership scheme. This study means so much to me on a personal level but also for the worldwide war against this disease and to be part of something that is gaining strength and numbers in this way could not be more important.”

We’re really looking forward to working with the new teams in Oxford and Cambridge and will be initiating these new sites for recruitment towards the end of the Summer 2016.

Please contact our National Coordinator Katie Wells (Katie.wells@imperial.ac.uk) if you would be interested in taking part in PREVENT at either of our new sites in Oxford and Cambridge, or if you wish to know more about supporting our study.

 

Thanks!

 

Team PREVENT

EPAD Launches in UK 

This week was a milestone week for PREVENT. The first ever participant into the European Prevention of Alzheimer’s Dementia project, probably the biggest single research programme ever to prevent dementia, has been recruited in Edinburgh. Julie was already a participant in PREVENT having been seen earlier in the year. Not only was she happy to be involved in both projects, she and her husband Steve were keen to share their motivation for helping research with the media.

EDINBURGH, UK - May 2016:  Julie Duffus from Tillicoultry in Scotland is the first person to take part in a major study involving 6000 volunteers from across Europe to find interventions that prevent the onset of Alzheimer’s dementia.

EDINBURGH, UK – May 2016: Julie Duffus from Tillicoultry in Scotland is the first person to take part in a major study involving 6000 volunteers from across Europe to find interventions that prevent the onset of Alzheimer’s dementia.

It is exactly the collaboration between researchers and participants that is the core of PREVENT’s success and we hope that this is also the case in EPAD.

There is massive optimism in the academic world and I think in the public at large that dementia is preventable. Work from Carol Brayne’s group is certainly pointing towards this and if we are making in-roads into the disease inadvertently – imagine what we could achieve with the whole weight of academic know how, public determination and finance. Last week the MRC, ARUK and Alzheimer’s Society (our main funder) announced the establishment of the Dementia Research Institute. £250M of funding over 5 years to dig deeper into the mechanisms of Alzheimer’s disease and other dementias.

We expect to play a major part in that from our key academic centres in Oxford, Cambridge, Imperial and Edinburgh. This can only be a goo thing BUT we need more support for the PREVENT project itself to achieve the recruitment target we need.

That is why we will soon launch our #Armyof1001 campaign to enrol 1000+ members into our membership programme by Dementia Awareness Week in 2017. We have a plan! It will officially launch the day we get our 1,001st Twitter Follower to @AD_PREVENT.

This will involve high profile meetings, concerts, celebrity endorsement and a social media blitz.

It’s only through being in projects like PREVENT that you can get involved with EPAD and EPAD can only develop the treatments we need so desperately if several thousand people collaborate.

Julie started this last week.

If you want to know more about becoming a member of PREVENT – please e-mail Katie on Katie.wells@imperial.ac.uk or simply click on the Donate button on this website.

Best wishes

Craig

What is The European Prevention of Alzheimer’s Dementia project? Craig Ritchie explains.

Co-Chief Investigator EPAD logo

Today is the investigators meeting for the IMI-European Prevention of Alzheimer’s Dementia (EPAD) EPAD project in Edinburgh.

What does this mean?

Well it means that we are about to start probably the largest single project to date specifically to help develop treatments that will prevent Alzheimer’s dementia. In Edinburgh, colleagues join us from across Europe (Amsterdam, Barcelona, Toulouse, Geneva and Stockholm) to train on the protocol for the EPAD Cohort Protocol. This protocol is to create what we call a ‘readiness cohort’ for clinical trials to be run in EPAD. This means that the whole process of testing out new preventative treatments is hugely speeded up.

How are PREVENT and EPAD linked?

The two projects are very closely linked at several levels.

Firstly, for entering the EPAD Cohort people need to be chosen from a series of existing cohorts across Europe like PREVENT. People aren’t chosen because they are at high risk of getting dementia. They are chosen because they will be able to contribute to the huge amount of data, scans, blood and other samples we are going to gather from literally thousands of people across Europe in the years ahead. I sometimes say that EPAD is ‘…like PREVENT on steroids’. EPAD is huge: over 10,000 participants planned, 36 partners, including Alzheimer’s Europe.

All this data – collected to the highest standard – will help us develop disease models for Alzheimer’s disease before dementia develops. These models will then be used to answer questions like:

-What are my chances of getting dementia?

-What treatments would suit me best?

-Can I do anything to change my risk? 

We are also building these models in PREVENT and our partner project ALFA in Barcelona (who are also partners in EPAD) and combining data or making discoveries in one study and replicating it in another are all robust and important ways of driving the science forwards. To do this we need people in all these studies are maybe at high risk, maybe at very low risk and everything in between.

Secondly, the science which has underpinned PREVENT is being used to help develop EPAD. There are literally hundreds of scientists and researchers involved in EPAD and many work across both EPAD and PREVENT. Karen Ritchie, Graciela Muniz-Terrera, Jean Manson and Simon Lovestone all have key roles, and I lead on both projects.

Thirdly, we have already been working with the Ethics team for EPAD from the University of Cambridge  on looking at Risk Disclosure and some of the PREVENT participants helped out in focus groups which is helping to shape the design of EPAD.

For participants in PREVENT we may be asking you if you’d like to join EPAD too. You can be in both studies at the same time. At the moment EPAD is only open in the UK in Edinburgh but it is almost certain it will open in London later this year too.

For our growing number of members, we will be updating all our newsletters about progress with EPAD too given how close together the two projects are and discussing it at our PREVENT Annual Conference being scheduled for late Autumn/early Winter in both London and Edinburgh (watch this space).

If you want to more about EPAD or PREVENT please feel free to contact us and we can explain more about both projects. We are always looking for new members for the PREVENT Project to help us with getting as many participants as we can enrolled. So far we have raised almost £150,000 in less than 6 months. Any donation you can make or ideas for a membership event are gratefully received. 

We will provide regular updates on EPAD and PREVENT on the website but also in our regular newsletters and on twitter @AD-PREVENT and @IMI_EPAD.

Thanks for reading and all your support. We know that we can PREVENT dementia and working together will make that difference.

Craig

Event report: Can We PREVENT Dementia?

We had an excellent time last week when we hosted ‘Can We Prevent Dementia?’, a public event around theIMG_9101 science behind dementia at George Square in Edinburgh. Prof Craig Ritchie, who leads PREVENT and the Centre for Dementia Prevention, hosted the evening, which was attended by around 40 members of the public. The night kicked off with some wine and nibbles before Craig gave a talk on how we could go design studies and go about preventing dementia. Many people in the audience were surprised to hear that there is a new diagnosis of dementia every 3 minutes, according to WHO figures, and that if dementia were a company, it would be the 4th largest in the world, with costs of $515bn a year.

What we have to do to understand dementia, is understand ageing, the single biggest risk factor for diseases like Alzheimer’s”, said Craig. One of the key points made was that changes in the brain happen many years before people show symptoms of memory loss that we associate with dementia. Craig pointed out that there is a fundamental lack of understanding about early brain changes, and a lack of dementia studies that look at people before they develop symptoms. “We have to look at healthy people in mid-life to spot very early biomarker changes that will help us understand risk, and in that way, PREVENT is a unique study”, he said.

Following Craig’s talk, Dr Tara Spires-Jones then showcased key molecular and cellular studies that she leads on at the University of Edinburgh. Tara’s work is focused on synapses, the connections between brain cells that are very important in cell-to-cell communication. There is very good evidence to suggest that synaptic dysfunction is involved in Alzheimer’s disease and other dementias. Tara opened her talk by outlining a key issue in dementia science: whilst dementia costs society £26bn per year, we only spend £74m on research. The audience and scientists then engaged in a very thought-provoking Q&A session touching on issues such as heritability of dementia and prognosis for people with Alzheimer’s disease.

We are delighted that many more people have signed up to be members of the PREVENT programme since the event and have signed up to be kept in touch with our study updates. Help such as this, alongside the fantastic support we get from the Alzheimer’s Society, enables us to develop and progress our science. If you would like to stay informed and learn more about membership, please click here.

2016 has been a really exciting year so far for PREVENT and we’re sure there will lots of interesting updates to come throughout the year. Stay tuned!

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The week in PREVENT

Katie Wells

Katie

The past week has been extremely exciting for the PREVENT team, we have welcomed back our very first participant for their Year Two follow-up visit. This will help us to see if there have been any changes in cognitive function or brain scanning since the last visit. This was completed successfully even with a few new assessments added in! The team in London have really enjoyed welcoming back the first participant and are all really looking forward to seeing all of our participants again and hearing what they have been up to over the past two years since we saw them last.

The Edinburgh site had a brief pause over the Christmas break but is now set to restart scanning and participant visits with increased momentum! We can’t wait to see the results of these studies, and thank you to everyone who has or plans to take part and help us overcome dementia.

Last week also signalled a landmark event by way of our first official launch event of the
PREVENT Membership scheme. The event was a great success and it was really interesting to hear different opinions on the scheme. The biggest topic of discussion surrounded the purpose of the Membership scheme which gave us a really good opportunity to scope what we aim to achieve by developing this. We heard some great ideas for fundraising and how we can spread the word and raise awareness of our research. We wanted to find out what people felt would be important to them if they became supporters of our research and we will be taking this feedback on board for future events and dissemination activities.

At the event, we heard a great suggestion from one of the guests who suggested we rebranded the scheme as the ‘PREVENT Foundation’ and we will be discussing this further with our colleagues as we both thought this was a great idea. What was clear from all those attending is that there is a real drive and passion for people to be involved with dementia research and even though many may not be able to help as research participants themselves this scheme could be a way for people to still get involved and help.

2016 has been a really exciting year so far for PREVENT and with our Edinburgh site now also recruiting new participants I’m sure there will lots of interesting updates to come throughout the year.

The PREVENT team are really looking forward to our next public engagement event being held in Edinburgh on 7th March 2016. It is called Can we PREVENT dementia?, and will give an overview of the science behind dementia in a really relaxed and informal session with a few of Scotland’s top scientists including Prof Ritchie and government advisor, Dr Tara Spires-Jones. There are so many misleading headlines in the news about dementia, and this informal evening will give everyone a chance to discuss these and find out the real science behind the headlines with some experts. Do come along if you’re in the area it’s set to be a great evening with plenty of nibbles and drinks to go round!

Thank you for reading!

Katie Wells, National Coordinator

Membership Meeting

2016: the Tipping Point in Dementia Prevention

PREVENT: The Tipping PointCo-Chief Investigator

I like the following definition of ‘tipping point’: ‘…the critical point in a situation, process, or system beyond which a significant and often unstoppable effect or change takes place…’. I like this because of several key words which I think are important for PREVENT: ‘critical’, ‘significant’, ‘unstoppable’ and ‘change’.

We ended the year opening up our second site in Edinburgh, following the success in West London. The number of people wanting to take part was over five times the numbers we could take on to the study because of limited resources. These people in two cities reflect the interest in the move towards dementia prevention. There is a real feeling that dementia research is undergoing a change: preventing dementia has real currency now from governments, scientists and the public who believe in what we are trying to do; prevention if the future and the timing is critical.

In 2015, the PREVENT study also became significant: we presented the project for the first time at major conference and we are increasingly being recognised as one of the key cohorts in Dementias Platform UK and the European Prevention of Alzheimer’s Dementia initiative.  Our partnership with the Alpha project in Barcelona indexes the global reach of PREVENT and the project has acted as the cornerstone of the new Centre for Dementia Prevention at the University of Edinburgh. We rounded off 2015 with looking at the pilot data for the first time and already we are seeing some signals of changes in the brain decades before dementia will develop. This is crucial to help understand and ultimately overcome risk.

In 2016, we need to do more.

In the USA there is a cornerstone project called ADNI (Alzheimer’s Disease Neuroimaging Initiative). ADNI has recruited about the same number of people as we are targeting in PREVENT (about 800), it has examinations and testing like PREVENT and to date it has cost about $80,000,000 and produced over 1,000 academic publications. PREVENT has secured just over £700,000 of funding and recruited 25% of the population in ADNI – in other words we are about 25 times more efficient than ADNI. However, to run PREVENT over the next 5 years needs closer to £5,000,000 of funding and we need to be imaginative on how we have achieve this significant funding. We need your help.

In 2016 we will launch in earnest the PREVENT Membership Scheme. This is our grassroots moment; our way of reaching out to the public and getting more people involved in the fight against dementia. By showing your support and becoming a member, you will help us achieve our common goal to overcome this life changing condition.

Let’s make 2016 our tipping point, an unstoppable force to change for good. Preventing dementia is comparable in terms of scale and impact to the progress made against HIV, in terms of space exploration and in terms of understanding sub-atomic physics; through investment in science, we can defeat this disease.

 

Best wishes for a happy, healthy 2016.

 

Craig

Special Guest Post from our Researcher, Stina

“Towards the end, my mum had lost all her memory, she didn’t remember or understand what was going on around her in the present. My mum used to love dancing with her father when she was younger and I knew she remembered those earlier memories a clearly as ever. The last conversation I had with my mum, before she passed away, I kissed her forehead and said she can now dance with her dad again. I knew this would give her comfort.”

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Kate (left) and Stina (right) modelling PREVENT t shirts!

My name is Stina Saunders and I am a researcher on the PREVENT study in Edinburgh – above is only one of the many touching stories the PREVENT participants have told me about when discussing their reasons for wanting to be involved with dementia research.

My background is in clinical psychology and I have found that working on the PREVENT study is quite a different experience from other clinical research I have been part of – when we opened our recruitment in September this year, within merely two days, 100 people had signed up to volunteer their time and efforts to our worthwhile cause. The surge of interest was so great in fact that we were forced to temporarily close the recruitment in the first week! It was overwhelming how many people were willing to give up their time to advance research in dementia.

For a researcher, PREVENT is an unusual study not only because we are clearly touching on a sensitive issue many people deem worthwhile and wish to contribute to, but also because we have an incredibly wide range of people volunteering their time to us as study participants. The study visits and particularly listening to the participants talk about their lives, to me, are the most interesting part of the job. Throughout the day, we ask participants about many aspects of daily life.

The study visit is a day of interacting with a team of researchers – Research Nurses, Psychologists, Study doctors. We are extremely aware that our study participants are working age people and we aim to be considerate of the time they take out of their busy lives to undertake the study assessments. As the year draws to a close, we will not be seeing any more participants before the next year – new participants will come in with new stories, backgrounds and reasons for volunteering their time and we are looking forward to meeting with them all and adding their exceptionally valuable data to our database.

My job is to coordinate the study visits – as such, I’ve been chatting to dozens of people who have signed up for our study. We think of our study participants as part of our research group – they are not only participants but collaborators  – testament to this is our participant’s kindness with their time. As well as time, we are delighted that some people feel able to make philanthropic donations through our membership scheme (an idea for a last minute Christmas present?!). This allows us to include more and more people in the study and get more data for meaningful results that will be published in medical journals and help us understand the risks associated with dementia.

To the lovely participant who shared the memory of her mother who lived with dementia and to everybody else who feels a connection with our cause, thank you for taking the time to come to our study and thank you for considering volunteering your time to all our future participants.

A happy Christmas to all! Edinburgh participants, we will see you again in two years time!

Very best wishes for a joyful 2016,

Stina