‘Join dementia research’

We are pleased to announce that Alzheimer’s Research UK is developing two exciting new services, aimed at getting people involved in dementia research and increasing public understanding of dementia.

Whenever I speak to researchers, I always try to understand what they think the limiting factors to more, and more effective, dementia research might be. Money is the obvious one, and Alzheimer’s Research UK is continually striving to add to the £53 million we have already funnelled into research. Another barrier we hear about is access to people willing to participate in research. However, when I speak to members of the public, especially those who have been personally affected by dementia, they are usually very keen to contribute to research but don’t always know the best way to go about it.

In 2012 the Prime Minister issued a challenge to get 10% of people who have a diagnosis of dementia participating in research. Encouragingly, research participation has been increasing; however, we are still some way off the target, at around 4%, and some way behind the level of participation being achieved in other conditions, such as cancer at 20%.

This is why Alzheimer’s Research UK has partnered with the National Institute of Health Research and Alzheimer’s Society to develop ‘Join dementia research’.

‘Join dementia research’

This fantastic new service allows you (if you’re over 18) to register your interest in becoming a participant in research and get involved in the fight against dementia. When you visit the ‘Join dementia research’ website, you’ll be asked to provide some details relating to your health, location, age etc. Dementia researchers can then search this register of volunteers to see if there are enough suitable people in their area to run a study they have planned. Once they have determined that their study is feasible, researchers will then approach potential participants using the contact details supplied to ‘Join dementia research’.

By registering you are not agreeing to take part in any particular study, just giving researchers permission to get in touch with you with details of their study which you can then decide to participate in or not.

At the moment the system is in a test phase and only recruiting to studies in the North London area, as well as parts of Hertfordshire and Essex, but studies operating throughout England will be added soon. Separate services are already up and running in Scotland, Wales and Northern Ireland.

Researchers are not only interested in working with people with a diagnosis of dementia (though these people are obviously incredibly important to research), many studies require healthy volunteers to act as control participants, so we’d encourage anyone interested to have a look at the website and consider signing up to help us defeat dementia.

‘Join dementia research’ allows for representatives to sign up one of their family members or friends who would like to join the service but may have difficulty doing so. Otherwise, people who’d rather not use the website can make use of the second of our exciting new services; the Dementia Research Infoline.

Dementia Research Infoline

The Dementia Research Infoline, open from 9-5 Monday to Friday, is staffed by our Research Information Officers, who will be happy to take your details and register you to ‘Join dementia research’ over the phone. Apart from registering volunteers for research, the Infoline is available for you to find out about:

• up-to-date information about current dementia research;
• the research evidence behind myths, claims or current newspaper articles about dementia and dementia research;
• general information about symptoms, causes, diagnosis, risk factors and treatments for dementia.

We’re not set up to offer medical or legal advice and, as an organisation, our focus is research rather than care, but if we’re not able to help with your enquiry we’ll always try to point you in the direction of an organisation that can.

For answers to your questions about dementia and dementia research contact the Dementia Research Infoline on 0300 111 5 111 or email us at infoline@alzheimersresearchuk.org.

If you prefer to write to us with your enquiries our postal address is:

Dementia Research Infoline,
Alzheimer’s Research UK
3 Riverside
Granta Park
Cambridge
CB21 6AD

We’re very happy to bring you these new initiatives as part of our continuing dedication to improve the quality of dementia research in the UK and provide the public with the best possible information about dementia and dementia research.

We look forward to hearing from you!