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.”

IMG_2335

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

Special Guest Blog from our Participant, Cate

We recently had a quarterly Participant Panel meeting with the PREVENT research team in London. So IMG_0072much has been achieved in the two years since we joined the PREVENT, which seems to have gone by incredibly quickly!  The feeling of connection to the study, its research team and the whole endeavour has been achieved largely by these panel meetings where we speak frankly amongst ourselves with the team. These meetings give us a chance to get to know each other as well as to ‘grow’ the study with consultation between researchers and participants. One of the great strengths of these meetings is the feeling that we are all supported and supportive of, each other, participants and researchers alike.

One of the highlights everyone looks forward to is the discussion of any headlines that have appeared in the media with Craig, (most recently it was the link with alcohol and dementia, mentioned in his recent blog). We look at headlines such as this, and get an opportunity to contextualise it in terms relevance to individuals and implications for our study. I feel privileged to be able to discuss this with our group. We have often discussed how these headlines can be so misleading when given out of context. This sort of misinformation can actually perpetuate some of the fear surrounding Alzheimer’s, so it is really important to everyone at PREVENT that we can are able to give a rational and reasonable view.

Funding is always a topic of our meetings, without it we cannot continue the study and we know we need to look at new streams of funding constantly to fulfil the aims of the study. Due to the momentum generated by every single person involved with PREVENT, there has been a fantastic response to recruitment. This month, PREVENT is launching a Membership scheme. Members can choose to make a Membership Pledge to help continue the study’s funding if they are able to. This seems to be a fantastic way to expand the study and increase awareness of our mission to prevent dementia. When speaking with people about the study its has become clear to me that people of all ages want to become involved in some way and to be kept abreast of the latest developments. The membership scheme will provide a way to reach out to younger generations who are keen to know more and take up a role in the fight against dementia. Everyone has a part to play, we need to facilitate that across the generations.

Currently 210 participants have now completed all tests at the London site, and the new Edinburgh site is up and running. There is a sense of real pride and achievement, to feel that so much has already been achieved, and that we as participants are the ‘Voice’ of the study. We can use that voice in the search for ways to identify risk factors earlier in dementia, and we will provide the ‘material’ that will enable that. It is pretty overwhelming really to think that we can be a part of something that is so huge in every sense! Over the months we have shared our stories and experiences, and together we have felt empowered by the study to speak up. One of the themes that has come up again and again for all of us pretty much is a feeling of powerlessness at times when faced with the challenge of Alzheimer’s and yet now, being part of this study, we are able to speak up, for ourselves and others who have lost their voice in all this. It feels great to be part of something that will effect change and the research team have included us and consulted us and answered our questions as well as asking the questions that will lead to breakthroughs.

As participants, PREVENT has become a big part of our lives, thoughts and experiences, and even our hopes and dreams, and our meetings are where we get to share our ideas together. Dare I forget to mention, we ALWAYS manage to have a laugh along the way…. More than anything else, this study reminds us that we are all as individual as our fingerprints, yet we must find common risk factors to beat the challenge posed by dementia.

Cate Latto

You can read Cate’s recent JDR blog post on PREVENT here.

Brain Health Blog

There is undoubtedly an inverse relationship between business and blogging – so despite our promise for a weekly ‘Brain Health Blog’ a full month has passed. It has been a very busy month.

 

The week after the last blog was spent in Australia (Melbourne and Sydney), it’s hard not to talk about PREVENT without talking about our major partner projects EPAD and DPUK. I was in Australia as a guest of the Wicking Trust to give their Inaugural Lecture at the Wicking Symposium, which was a great honour. The main focus as ever was prevention and in particular the role EPAD is going to make in achieving this. We are really hopeful that the Australians will set up an Australian Prevention of Alzheimer’s Dementia (APAD) programme. One of the highlights for me was being interviewed by the amazing Fran Kelly on ABC, explaining the power and possibility of prevention for dementia.

 

In the news Public Health England noted the link between alcohol and dementia risk. This epidemiological finding needs exploring biologically and we have the data in PREVENT to be able to do this – and we will though results may take some time to come through as it will be our long term data that helps us understand this. I think there was also some scaremongering about Alzheimer’s being infectious – when you understand what the scientist were really saying you’ll realise how (unfortunately again) the headlines were much larger than the story. Alzheimer’s disease is not an infectious disease!

 

Recruitment in Edinburgh is going really well and we had to close the JDR recruitment in 2 days as we had over 100 interested people wanting to sign up. The team in Edinburgh have been amazing especially and special thanks to CRIC (Clinical Research Imaging Facility) for working into the evening to scan our participants. Katie visited Barcelona last week as our abstract was presented at the Clinical Trials in Alzheimer’s Disease conference, and she also visited our partner project ALPHA led by our good friend and colleague Dr Jose Luis Molinuevo. We have plans now to formalise the links between our two almost identical projects and combine data and ideas to really enhance the power and impact of our work.

 

We also had a really purposeful Participants’ Panel meeting on 23rd October where we discussed at length learning from our friends in Barcelona and setting up a Membership Scheme for PREVENT – more on this later once we work out some details.

 

Finally, and maybe our biggest news, is confirmation that we have the University of Edinburgh backing to establish the Centre for Dementia Prevention, which has PREVENT at its core and is co-directed by Prof Jean Manson from the Roslin Research Institute and Prof Charlotte Clarke from the School of Health in Social Science. We are launching at the Edinburgh Arts College on 25th November (anticipate a gazillion tweets with photos) with Prof Miia Kivipelto of the FINGER study fame and Jean Georges from Alzheimer’s Europe travelling to make key note speeches. Closer to home Henry Simmons  – is closing our meeting – bit of a quid pro quo as I am really looking forward to giving their Christmas Lecture on 3rd December.

 

Hopefully the next few weeks will be as busy for us as the last few – but will try really hard to turn in a Brain Health Blog before another month has passed. By the way – feel free to tweet us at @AD_PREVENT- it is really good to get a dialogue going.

 

All the best,

 

Craig

What a great week for the PREVENT Project – and a busy one!!

We recruited our first subject (we prefer saying collaborator) to the project in Edinburgh today and all went well. Through Join Dementia Research we have almost 100 people around Scotland interested in participating. We really want to be able to get everyone involved and will always look at ways we can expand our ability to get people into the study. I went to Barcelona earlier in the week as part of my EPAD (European Prevention of Alzheimer’s Dementia) role. We saw a lot of the team from the ALFA study including our friend Dr Jose Molinuevo who is PI for that study. Independently, we set up very similar studies to look at mid-life risk and intervene to help reduce this where it is high. They have an amazing facility being built in Barcelona (right next door to the zoo) and have a fantastic connection with their public through a membership scheme in the project.

I loved a lot of ideas they have about public engagement, fund-raising and science – much to collaborate on.

Next week I am lucky enough to be taking the PREVENT and EPAD message to Melbourne and Sydney to present at the Wicking Foundation Trustee’s Public Lecture. Going there reminds me of how this is a global challenge and only large ‘game changing’ projects like EPAD and PREVENT working collaboratively with other groups like ALFA and through Dementias Platform UK can make the difference we all want to see.

When science or scientists work in silos or in isolation of each other progress is hampered – that is why the PREVENT ethos has always been to welcome collaboration and partnerships. 

Kate McAllister who works here in Edinburgh on DPUK has almost finalised on the DPUK website a ‘cohort finder’ so scientists can more easily work together and we are delighted that the PREVENT project and it’s thinking are central to that development. In the meantime, have a look at their Cohort Matrix.

Outside of the PREVENT project we didn’t pick up much news about other projects. Unusual, as ‘breakthroughs’ seem to be coming at us thick and fast but often the text beneath the headlines is much more measured. We will keep an eye out and post what we think is both good science and important.

We’ve got our participants panel in a couple of weeks and I’m going to float this ‘membership scheme’ with them and see what we can do to make it happen in the UK. We are so so grateful to the Alzheimer’s Society for all their support but know that to really grow the science in this project we need to find different, perhaps novel ways of funding the project – opening up Edinburgh and seeing the demand from the public to be involved is really driving the team on to think how we can get the resources to help satisfy the demand. 

Have a great weekend all and chat more at the end of next week.

PS was just about to post this and checked our Twitter account and we just hit #500 follows – what a great week indeed for @AD_PREVENT 🙂

Craig

New website, a new study site, and more…

Thank you for coming to have a look at our new website! We hope you will find out some information about the PREVENT dementia study and our aims to better understand the mid-life risks associated with dementia, and how we can go about lowering those risks. If you are aged 40-59, you might even consider taking part!

Continue reading