In February 2015, a new national service called Join Dementia Research launched to help members of the public with and without dementia register their interest in participating in research. Dr Elizabeth Coulthard and her team at the University of Bristol are urging more people in the area to consider signing up.
Join Dementia Research is funded by the Department of Health and delivered by the National Institute of Health Research in partnership with Alzheimer's Research UK, Alzheimer's Society and Alzheimer Scotland. The online and telephone service is the first of its kind in the UK and aims to provide an opportunity for those with dementia and their friends and family to get involved in pioneering research, as well as streamlining the recruitment process for researchers. By signing up, volunteers agree to be contacted to take part in new studies getting underway in their area, from which point they can decide if they wish to take part.
There are currently 39 research studies looking for volunteers through Join Dementia Research, including several studies running in the Bristol area. These include a clinical trial to investigate whether a blood pressure treatment could slow memory decline in people with Alzheimer’s, as well as study investigating the earliest brain changes in the disease.
Dr Coulthard, Consultant Senior Lecturer at the University of Bristol and Neurologist at the North Bristol NHS Foundation Trust, is looking for volunteers for a brain imaging study to detect the earliest changes in the brain in diseases like Alzheimer’s.
She said: “People with dementia who are willing to volunteer for studies are the life-blood of our research and are absolutely crucial if we are to keep making progress. We’re looking for people with Alzheimer’s disease and frontotemporal dementia as well as people with early memory problems and healthy volunteers for our study. We’re asking volunteers to take a 30 minute MRI brain scan and do a memory test to help us develop better brain scanning techniques to detect the disease earlier.
“There is so much pioneering research taking place in this region and Join Dementia Research is a really important resource to help us move forward more quickly. The more we can spread the word about Join Dementia Research the more everyone – researchers and people with dementia – will be able to benefit.”
Join Dementia Research allows anyone with and without memory problems to sign-up using basic demographic and health information and be matched to studies in their area. Research teams whose studies are recruiting using Join Dementia Research can then approach them about their particular study and the volunteer can decide whether to take part on a case-by-case basis.
It’s also possible to register on behalf of someone who may not be able to register themselves, acting as a representative. This allows people to sign up those who may need assistance using the system or may have dementia themselves and benefit from a helping hand.
Hilary Doxford, from Yeovil, who has dementia and was one of the first people to sign up to Join Dementia Research, said: “Without a cure we are reliant on research to find that cure or ways to help us live better with dementia for longer. Research cannot happen without people with dementia but it has been hard for researchers to find us and for us to find out about research opportunities and what it may involve. Join Dementia Research provides information and volunteering opportunities for research, which has given me something very positive to focus on. The involvement of people with dementia today will hopefully help not just us but so many in the future. I really would encourage anyone who has, or knows someone with, dementia to have a discussion about research and consider signing up to Join Dementia Research. It could be a positive step in your life too.”
People with and without dementia can sign up online at Join Dementia Research or contact one of the charity helplines: Alzheimer’s Research UK (0300 111 5 111) or Alzheimer’s Society (0300 222 1122).