Thousands of new volunteers sign up to ground-breaking dementia research studies

Posted on 14th August 2015

The Government’s ambition to find a cure for dementia by 2025 has been boosted by a dramatic rise in people volunteering to take part in ground-breaking research studies.

During the last year almost 22,000 people have taken part in research studies to tackle the condition – a 60 per cent rise – according to figures published today by the National Institute for Health Research (NIHR). The increased participation in 100 ground breaking dementia research projects across the UK will give scientists a huge advantage in finding new treatments to prevent, treat and eventually cure the illness.

Research projects include testing whether antibiotics slow cognitive decline, investigating the role of the immune system in dementia, identifying genetic risk factors and improving end of life care for people with dementia.

Government Minister for Life Sciences, George Freeman said:

“Dementia is a devastating condition that can have a significant impact on the lives of those affected and their families.

“Volunteers are essential to our battle against the disease and I’m delighted that so many people – with and without dementia – are coming forward to participate in ground-breaking new trials.

“There is still a long way to go but with their help we hope to find a cure or disease modifying therapy by 2025. The race is on.”

Dementia affects 850,000 people in the UK and this figure is expected to rise to over two million by 2051 – greater than the entire population of Liverpool, Manchester and Birmingham combined. Taking part in research allows people with dementia to learn more about their condition and feel they are contributing to the effort to find treatments for it in the future.

The boost in participation was in part triggered by the Prime Minister’s Challenge on Dementia, launched in March 2012. David Cameron called on the public, charity and private sector to do more to improve diagnosis, care and research into the disease. Following the success of this initiative, the Prime Minister launched the Dementia2020 Challenge that aims to make England the “best place in the world to undertake research into dementia and other neurodegenerative diseases”.

The Challenge also included the aspiration to have 10% of all people with dementia participating in research by 2020. Nationally, 5.5% of people with dementia took part in research in 2014/15, up from 3.7% in 2012/13. We’ve already seen some areas going beyond this target though, such as Greater Manchester which has recruited 12% of people with dementia into studies.

The fight against dementia has also been boosted by the $100m Dementia Discovery Fund which was announced in March 2015 by the Health Secretary, Jeremy Hunt. The fund – which brings together investment from the UK Government and a number of charity and private sector partners – is an innovative way of financing research into new dementia drugs and treatments.

Chris Roberts, 54, from Rhuddlan in North Wales, has been involved in a genetics study at Bangor University looking into young onset Alzheimer’s. Following his involvement in the trial, Chris said:

“After a diagnosis of dementia your whole family also receives the diagnosis, it’s a team effort. What we then need is hope and this is what research gives us. Taking part means I’m doing something constructive and worthwhile, I’m leaving something behind that might help others, if not myself. Any kind of research, small or large, brings with it hope that there may be a future.”

As government and charity funding for dementia research has doubled, researchers urgently need more people to participate in studies. The development of an online and telephone service called Join Dementia Research has been a significant step in supporting the public to take part in research. The service, developed by the NIHR Clinical Research Network in partnership with the charities Alzheimer’s Research UK, Alzheimer’s Society and Alzheimer Scotland, allows anyone – with and without dementia – to register their interest in being approached about research.

Hilary Evans, Chief Executive of Alzheimer’s Research UK, said:

“We cannot overstate the importance of volunteers giving up their time to help with research, whether that’s doing a quick online survey or a more intensive programme of assessments. Join Dementia Research is an easy way for people to play their part in defeating dementia, at whatever level of commitment suits them. There’s been a fantastic public response to Join Dementia Research since its launch and it’s heartening to see the UK public coming together to help solve our greatest medical challenge.”

Professor Martin Rossor, National Director for Dementia Research at the NIHR, said:

“With the continued focus on dementia research and increasing levels of funding, we expect to need even more people to participate in dementia research over the coming years. Traditionally it has been difficult to identify the right people for the right study at the right time, but Join Dementia Research is streamlining this process and we are already seeing the benefits of this boost in volunteers for research. Join Dementia Research makes it much easier for people, wherever they live, to get involved in research and the willingness of the public to help research is vital for us to make the progress that we all hope for.”

With more than 9,000 people already signed up to Join Dementia Research and 51 research studies using the system to recruit participants, Join Dementia Research has played an important role in boosting the number of people enrolled in dementia research.

Encouragingly, we have seen an increase in younger people signing up to the initiative. A group that is often under-represented amongst volunteers though is those over 75, whilst men of all ages are encouraged to sign up as participation among women has been three times as high.

Anyone interested in volunteering for dementia research can sign-up to Join Dementia Research online at www.joindementiaresearch.nihr.ac.uk or those unable to register online can contact Alzheimer’s Research UK on 0300 111 5 111.

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