Date: 31 October 2019
More than 2,000 people in Greater Manchester have now taken an important step in the fight against dementia by signing-up to Join Dementia Research (JDR).
Passing the landmark represents a big step forward in the region for JDR, a nationwide service run by the National Institute for Health Research (NIHR).
A total of 2,055 volunteers are now registered with JDR in Greater Manchester, providing a large database of enthusiastic people for researchers to approach when seeking participants for their studies.
JDR is an easy-to-use platform that was launched in 2015 to support the government’s Challenge on Dementia. The challenge also aims to have 25% of all people diagnosed with dementia or Mild Cognitive Impairment (MCI) signed up as volunteers to the JDR Service.
Every 3.2 minutes, someone in the UK will be diagnosed with dementia. However, our knowledge of the condition lags behind many other health problems such as cancer and heart disease.
By signing up to JDR, a person can help meet this challenge by registering their interest in participating in dementia research. This means they can be matched to an assortment of suitable studies being carried out in their local area. Studies vary from simple questionnaires and interviews to therapy interventions and even drug trials.
The service is primarily aimed at people with dementia and their carers. However, anyone over the age of 18 can sign-up and play an important role as a 'healthy volunteer', allowing researchers to compare the differences between healthy brains and those affected by dementia.
Carol Simcock, who lives in Cheshire, with her husband Bryan, took part in a research study after registering with JDR. The grandmother-of-two has mild Alzheimer’s Disease has encouraged others to sign-up.
She said: “When anyone asks me ‘why do you do it’? I say, ‘why not?’ There is no risk to me whatsoever and it makes me feel good, because I know I’m contributing something in the fight against dementia and that I’m doing my bit for society. I would encourage anyone to do the same.”
Angela Aldridge, Clinical Research Operations Manager at NIHR Clinical Research Network in Greater Manchester, has led the local campaign by engaging with communities and working with local health trusts, GP surgeries, charities and other partners. Angela says: “The more people who register their interest in research, the greater the chance of improving dementia care and treatments. Passing the 2,000 landmark is a huge step forward, indicating that more conversations about dementia research opportunities are taking place in the region.”
Currently, the borough with the highest amount of volunteers with a memory diagnosis signed up to JDR in the Greater Manchester region is Stockport. Bolton has the second highest, closely followed by Trafford with the third highest number of volunteers.
Broken Cross Surgery in Macclesfield and Ashton Medical Centre in Wigan are fantastic examples of local GP practices supporting the campaign by having a digital JDR sign-up kiosk in their waiting areas. Their kiosks are regularly in the 10 best performing kiosks in the country, in terms of the number of people either signing-up to JDR via the kiosk or entering their contact details to receive further information.
Dr Ian Collyer, GP at Broken Cross Surgery, said: “The eye catching JDR kiosk looks great in our medical centre waiting room and takes advantage of the high footfall there. Patients love interacting with the tablet and are keen to get involved in dementia research.”
Briony Ward, practice manager at Ashton Medical Centre, said: "We have been really pleased with the enthusiasm that our patients have shown in taking up the offer to help with NHS research.
“Everyone who works in the NHS knows the best way to achieve better outcomes for people with dementia is to work together to find new ways to treat the condition - and it seems that our patients agree.”
Jacqui Cannon is Chief Executive Officer of the Lewy Body Society. Since before losing her Dad to Dementia with Lewy Bodies in 2010, Jacqui has been passionate about promoting dementia research and supports the campaign in Greater Manchester as a JDR Champion.
She said: “It’s fantastic to know that 2,000 amazing volunteers are now registered to play a vital role in research in Greater Manchester, but we’ll be working as hard as ever to encourage more people to sign-up and keep this number increasing.”
Dr Sarah Fox has supported the campaign in her role as Patient and Public Involvement and Engagement officer with Greater Manchester Mental Health NHS Foundation Trust.
She said: “Over 2,000 Greater Manchester volunteers have now signed-up with Join Dementia Research to help us better understand and ultimately treat this devastating group of diseases.
“We are exceptionally proud of the staff who have helped make this possible and the thousands of residents who are dedicating their time to help us find a cure. Keep up the good work everyone, together we can beat dementia!”
Looking to the future
This is an important milestone, but we still need more people to sign-up to Join Dementia Research and get involved in studies.
The more people who register, the more studies can find the participants they need and reach their potential.
Together we can make a difference to the lives of everyone affected by dementia.
Healthcare professionals can also play a key role by using the LEARN Join Dementia Research awareness tool to signpost their patients to JDR.