The West of England has become the first region in the country to reach 2000 people signed up to the Join Dementia Research service.
The nationwide initiative, launched less than 20 months ago, makes it easier for people to register their interest in volunteering for dementia research studies. People who join can easily see what dementia research is taking place, both in their local area and across the country.
The West of England has set the pace for people registering since last December when a promotional bus took the Join Dementia Research message to Bristol, Gloucester, Swindon and Weston-super-Mare. Nationally, the service has now surpassed 23,000 volunteers. Since then, the service has been promoted in memory cafes and other services for those with a diagnosis of dementia, leaflets have been placed in libraries across the West, the Mayor of Bath has held a civic reception to thank supporters and 10,500 letters have been sent to GP patients in a trial mailshot from four practices. Work continues locally this year to reach a point where everyone diagnosed with dementia has the opportunity to take part in research.
One of the volunteers who has helped the service throughout the year is Hilary Doxford, who is a World Dementia Council member and is living with dementia. She is currently taking part in a research study looking at brain inflammation as dementia develops.
Hilary, who lives in Yeovil and works for the UK Renal Registry, based at Southmead Hospital, said: “I love being involved in research. It keeps my brain active and I’ve gained a much better understanding of the disease and its progression than I might otherwise have had.”
As well as signalling people’s interest in taking part in studies, Join Dementia Research provides a hugely valuable resource to researchers in their search for potential study participants. Before the service was introduced, only one in three dementia research studies recruited enough volunteers within a year. There are currently 15 dementia studies open in the West of England.
Researcher Hanna Isotalus, from the University of Bristol, has been using Join Dementia Research to recruit volunteers for the DARet1 study, which is looking at whether a certain drug can improve memory performance in healthy older adults.
“In less than four months we recruited 20 volunteers who either have completed the study or are currently completing it.
The study protocol requires four visits to the research centre and a number of phone calls, so it is important for us that our volunteers are motivated to take part. We have had a very low drop-out rate with participants recruited through Join Dementia Research, despite the intense participation programme.
“For our other studies, the service has also proven itself as a great resource for recruiting patients with mild cognitive impairment and Alzheimer’s disease. My next study is already being set up and will open for recruitment soon, and we know where to go to find potential volunteers – Join Dementia Research.” You can help beat dementia by signing up to Join Dementia Research.
Find out more at www.joindementiaresearch.nihr.ac.uk or by calling Alzheimer’s Research UK on 0300 111 5111 or the Alzheimer’s Society on 0300 222 1122. The service is funded by the Department of Health and delivered in partnership with the National Institute for Health Research, Alzheimer’s Research UK and the Alzheimer’s Society. It was launched as part of the Prime Minister’s Challenge of Dementia to increase the numbers of people with dementia participating in research. Dementia affects 850,000 people in the UK – a figure expected to rise to over one million people by 2021.
For further information about DARet study, please see http://news.joindementiaresearch.nihr.ac.uk/the-daret-study/