Dementia research to get boost in participants from new online and telephone service

A new online and telephone service has been launched making it easier for people to take part in research into dementia.

Join Dementia Research hopes to speed up 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.

The new initiative has been developed as part of the Prime Minister’s Challenge on Dementia and follows his announcement of £300m for dementia research with a direct call for the public to get involved.

Join Dementia Research is a collaboration between the National Institute for Health Research (NIHR), Alzheimer’s Research UK, Alzheimer’s Society, Alzheimer Scotland and UCL Partners, and has been funded by the Department of Health and NHS England.

Professor 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. Growing the number of willing research volunteers will help push forward research to make advances in treatment, prevention and care.”

Under five per cent of people with dementia participate in research

Currently less than five per cent of people with dementia take part in research studies. However a new national poll carried out by Alzheimer’s Research UK has shown that almost two thirds of the general public (62 per cent) would be willing to take part in dementia research, but more than four out of five people (81 per cent) wouldn’t know how to volunteer.

Secretary of State for Health, Jeremy Hunt, urged people to use the new service, saying: “New research is desperately needed to help the growing numbers of people who live with dementia, which is why we’re doubling the size of the funding pot. This is an important initiative, and I encourage anyone who is interested to visit the website or call the charity helplines to find out more about how they can help us tackle dementia.”

Prof Dame Sally Davies, chief medical officer for England, called it a “superb initiative” and said: “Join Dementia Research is a potential pathfinder for other fields, showing how to boost patient and public participation in research.”

Dementia affects over 850,000 people in the UK, with 25 million of the UK population having a close friend or family member affected.

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.