National launch of ‘Join Dementia Research’

A new nationwide online and telephone service that helps people to take part in dementia research studies was launched on 24 February 2015. Join Dementia Research (JDR) is a collaboration between the National Institute for Health Research (NIHR), Alzheimer’s Research UK, Alzheimer’s Society and Alzheimer Scotland and has been funded by the Department of Health. Locally, the research coordination of the service is resourced collaboratively by the West of England Academic Health Science Network and the NIHR Clinical Research Network: West of England. There are seven studies open on JDR that are recruiting in the West of England, and the number will increase.

Dementia affects over 850,000 people in the UK, with 25 million of the UK population having a close friend or family member affected. A new national poll 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. Join Dementia Research is designed to overcome these barriers and give everyone the opportunity to play a role in changing the outlook for people with dementia now and in the future.

Join Dementia Research hopes to accelerate 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. It is designed to match people to appropriate research studies using their personal information and interests. Current research ranges from clinical studies of new treatments to surveys about what works in improving quality of life for people with dementia and their carers.

Nigel and Chantel’s story

Chantel and Nigel have been married for 32 years. Nigel was a bus driver for 30 years when he started to have problems with numbers and counting. This is when Chantel realised that there might be something wrong. In 2009, Nigel was diagnosed with Familial Alzheimer’s Disease. It was during one of their visits to the hospital that their doctor asked if they would be interested in taking part in research exploring the genetic causes of the condition.

Chantel said: “I can truly say that being involved in research changed our lives as we felt we had much more of an understanding of the disease, and the research team were able to support us all the way through. It’s amazing what goes on behind the scenes. It helped Nigel gain peace of mind knowing that he will be able to contribute to the improvement of diagnosis and treatment of the disease for future generations.”

How do I register my interest?

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).

Your details will be stored securely, and will be regularly matched against appropriate studies.