Trust supports nationwide dementia research
Northern Devon Healthcare NHS Trust is supporting a new nationwide online and telephone service that helps people in the South West of England to take part in dementia research studies.
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.
This new Department of Health funded service is a collaboration between the National Institute for Health Research (NIHR), Alzheimer’s Research UK, Alzheimer’s Society and Alzheimer Scotland.
Dementia affects over 850,000 people in the UK, with 25 million of the UK population having a close friend or family member affected. In England there were 316,864 patients on GP dementia registers in 2013 and 16,786 of these patients were in the South West Peninsula. The prevalence of dementia in the South West Peninsula (Devon, Cornwall & Somerset) is 0.74% of the population compared with 0.57% nationally.
A new national 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 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’s Society (0300 222 1122).
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.
Linda Henderson, Research and Development Manager at Northern Devon Healthcare NHS Trust said, “We welcome the Join Dementia Research Initiative as an exciting and innovative way to match potential volunteers for dementia research studies with researchers.
“Current research studies range from clinical trials of new treatments to surveys identifying what works in improving the quality of life of people with dementia.
"Dementia affects individuals, families and communities in the South-West. By registering with Join Dementia Research everyone has the potential to add to the research knowledge, working towards the treatment prevention and care."
Tina Naldrett, Assistant Director of Nursing, (Community) and Clinical Lead for Dementia at Northern Devon Healthcare NHS Trust said, “This is an important opportunity for us all to get involved in dementia research.
“Every year we find out more about how to support people and their families living with dementia. Research is vital in understanding the condition. You may or may not be living with dementia, but you can be part of future solutions by helping researchers understand more about the most effective ways to care for and treat people with this disease.”
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.”
