What is Join Dementia Research?
Join Dementia Research is a UK based service that allows people to register their interest in taking part in dementia research. It helps people with dementia, their carers, or anyone interested in dementia research to be matched to studies taking place in their area.
The service is managed by the National Institute for Health Research in partnership with Alzheimer's Society, Alzheimer's Research UK and Alzheimer Scotland. It helps to recruit people to dementia studies taking place across England, Scotland, Wales and Northern Ireland.
As of December 2016, over 25 thousand people have signed up to Join Dementia Research. Over 6,000 are enrolled in studies across the UK and over 100 studies have used the service to recruit participants
If you have any questions about Join Dementia Research, you can call our National Dementia Helpline on 0300 222 11 22.
Why should I sign up?
'I signed up because research is crucial for the hope of a cure and for improvements in treatments and care. Research can also help us to develop technologies to help people with dementia live as well as they can, for as long as they can.'
Sue, Research Network volunteer
Many people who choose to take part in dementia research do so because they value the opportunity to make a difference. For people with dementia, taking part in research often helps them to gain a better understanding of their condition and to have their health monitored more closely. Many find it a very positive experience and feel they are making a worthwhile contribution to the future of dementia care and treatment.
However, many people who would like to take part in research studies are not sure how. Other people would like to help with research but are worried that all studies involve taking new drugs or that they will be used as 'guinea pigs'.
The Join Dementia Research service represents an easy way to register your interest in taking part in a study. The studies that are listed on the service are a mixture of clinical trials of new drugs and other studies, including improving understanding of care practice or looking into links between lifestyle and dementia risk. All of the studies have ethical approval, which requires the researchers to submit their work to be reviewed by an independent ethics committee. The committee ensures that the study is well designed, and that the rights, safety and well-being of research participants will be protected.
If there are any studies that look like they will suit you, the study teams will contact you to discuss what is involved. You will have the opportunity to ask as many questions as you need to before deciding whether or not to participate. There is no obligation to take part if you are matched to a study.
Who can sign up?
Anyone over the age of 18 can sign up. People with and without a diagnosis of dementia are able to register.
You can register on behalf of someone else as long as you have their consent.
How do I sign up?
You can sign up online at www.joindementiaresearch.nihr.ac.uk
Alternatively, you can call our National Dementia Helpline on 0300 222 1122 and say you are interested in Join Dementia Research. Our trained advisers will then contact you and guide you through the registration process.
There is much more information about how the service works on the Join Dementia Research website (www.joindementiaresearch.nihr.ac.uk). This includes frequently asked questions and information for researchers who want to use the service to recruit to a study. If you prefer, you can also talk things through with our specialist Join Dementia Research helpline team.
If you are concerned or have questions about taking part in research, please do talk to your GP or healthcare professional about the best options for you.