A new nationwide online and telephone service that helps people to take part in dementia research studies launches today. Join Dementia Research promises to accelerate the pace of dementia research by allowing people with and without dementia to register their interest in studies, helping researchers find the right participants at the right time. Join Dementia Research is collaboration between the National Institute for Health Research (NIHR), Alzheimer’s Research UK, Alzheimer Scotland and Alzheimer’s Society and has been funded by the Department of Health. Its development in Scotland has also been supported for the past year by the Scottish Dementia Clinical Research Network (SDCRN).
Dementia affects 88,000 people in Scotland (850,000 people in the UK) with almost half of the Scottish population having a close friend or family member affected. A new UK poll* has shown that almost two thirds of the general public (62%) would be willing to take part in dementia research, but more than four out of five people (81%) wouldn’t know how to volunteer. Join Dementia Research is designed to overcome these barriers and give everyone the opportunity to play a role in changing the outlook for people with dementia now and in the future.
The lack of access to willing volunteers is holding back critical research into the condition with government figures showing that less than 5% of people with dementia take part in research studies. The first of its kind in the UK, this innovative new service will boost research participation by connecting people interested in research to suitable dementia studies across Scotland, England and Wales. After piloting the service in a small region for six months, more than 1,800 people have signed up and already over 200 of them have participated in studies through Join Dementia Research.
The joindementiaresearch.nihr.ac.uk website offers a secure and easy way for someone to register their interest, discover studies that interest them, and ultimately connect with researchers to take part in their studies.
Anyone aged 18 years or over can sign up themselves, or on behalf of someone else, either by registering online or by contacting the helplines of Alzheimer’s Research UK (0300 111 5 111) and Alzheimer Scotland (0808 808 3000 – free to call, open 24 hours a day, 365 days a year). By signing up to the service, people give permission for researchers to contact them with details of studies in their area that match their profile. People can then decide if they would like to participate in those studies on a case-by-case basis. By registering, people do not have to take part in any studies and can opt-out at any time.
Minister for Sport, Health Improvement and Mental Health, Jamie Hepburn, said:
“The Scottish Government is delighted to support the Join Dementia Research initiative, which will help recruit more volunteers into research.
“Through The Chief Scientist Office, we continue to provide funding of £475,000 per year for the Scottish Dementia Clinical Research Network. This complements our wider national work to further improve dementia diagnosis rates and improve care in all settings. As part of this, we are supporting the delivery of our world-leading post-diagnostic support guarantee for everyone newly diagnosed with the illness.”
Prof Martin Rossor, the NIHR National Director for Dementia Research, said:
“The government and charities have increased funding for dementia research over the last few years, meaning more studies are being done than ever before, but it’s often difficult to find willing volunteers at the right time.
“Join Dementia Research offers a way of ‘match-making’ – linking volunteers to researchers. The system also helps us plan future studies. It’s important that everyone should be able to find out about research that is happening near to where they live and get the opportunity to be part of that research. People can register with Join Dementia Research without being obliged to take part in a particular study, but we hope that the service will expand the pool of willing participants. Growing the number of willing research volunteers will help push forward research to make advances in treatment, prevention and care.”
Sue Boex, one of the carers who helped design Join Dementia Research, said:
“This is a very exciting initiative, and one we really need people to get behind. Everyone can sign up, whether you have dementia or not and there are lots of different types of studies to take part in. But because studies have very specific criteria, we need lots of people signing up in order to find the right people for the right study at the right time. I hope that 100,000 people will join the service in the first year. It’s an ambitious target, but dementia is a massive problem and we’re ambitious to help make a difference through research.”
Henry Simmons, Chief Executive of Alzheimer Scotland, said:
“As Scotland’s leading dementia charity, we are delighted to be involved in Join Dementia Research. Dementia is Scotland’s most pressing public health issue.
“It has never been more important for us to encourage and support members of the public to participate in dementia research. It is only through research that we will better understand this illness, improve and extend the range of treatments available, provide the best possible care and hopefully find a cure. Join Dementia Research will make volunteering for research much easier for the public and allow many more people to become involved in this vital work.”
Speaking about this new service, Hilary Evans, Director of External Affairs at Alzheimer’s Research UK, said:
“As a charity focused on dementia research, we’re acutely aware of the tremendous impact volunteers make on research progress in dementia. We know there is a strong appetite from the public to play a role in dementia research, but until now there hasn’t been an easy and coordinated way for people to register their interest. We’re proud to be supporting Join Dementia Research to give people with dementia and their families the opportunity to be part of pioneering research to improve the lives of everyone affected by this heart-breaking condition.”
Prof. Peter Connelly, Director of the SDCRN, said:
“Join Dementia Research (JDR) is an exciting opportunity to provide lay people and researchers in Scotland better access to high-quality studies across the full range of dementia research; from possible prevention through to improvements in how the treatment of more advanced stages of illness can be cared for. It bridges an important gap between SHARE (with its wide population appeal) and the very detailed Scottish Dementia Research Interest Register, both of which have been well-supported by the Scottish Government. We welcome its introduction and we should grasp the opportunity for involvement with both hands.”
Prof. John Starr, Director of Alzheimer Scotland’s Dementia Research Centre at the University of Edinburgh, said:
“Although many of us care for people with dementia, formally or informally, day-to-day, we know that the only way to make a difference in the long term is through research. Join Dementia Research is a way that anyone can help to make this difference and I am delighted that people in Scotland will be able to participate in this important initiative.”