CRN Greater Manchester core team blog series: Join Dementia Research Project Officer

Join Dementia Research is run by the NIHR in partnership with the Alzheimer’s Society. The service enables people to register their interest in participating in dementia research and be matched to suitable studies. Through Join Dementia Research, people can see what dementia research is taking place, both in their local area and across the UK. The service also connects researchers with people who want to participate in studies. 

I have worked as a Join Dementia Research lead admin since 2015 when the service started. Back then we had a handful of registered volunteers and we now have 2,706 volunteers within Greater Manchester which is a real achievement! We’ve had approximately 1,300 people participate in dementia studies via Join Dementia Research and currently have nine studies open for recruitment. 

My role involves assisting researchers to find study participants by contacting people who have been matched to their study on the Join Dementia Research database, either via email, telephone or by letter. I add studies to Join Dementia Research and train researchers to use the service so they can recruit participants themselves. Engagement is also part of my role and with the support of our delivery team we attend events and carers groups to talk about research and Join Dementia Research and I particularly enjoy being part of our ENRICH (Enabling Research in Care Homes) team. 

Some National JDR statistics:

• 61,802 people registered
• 75,468 participants have joined a study
• 314 research sites across the UK have used the service
• 2,497 researchers have been trained to use the service
• 107 studies are currently recruiting

Some recent successful national and local projects include: 

• Call Back Service – This allows people who want to register for Join Dementia Research to add their name and telephone number to the call back tab via the website and a member of the helpdesk team will call them back within five days
• GP Text Messaging Initiative – GP surgeries sent out text messages to service users with a link to register for Join Dementia Research
• Pharmacy2u Project – Pharmacy2u, the UK's largest online pharmacy, sent out text messages to service users with a link to register for Join Dementia Research

The projects mentioned above have all proved to be a success story for our local region with an increase in registrations over the past year. 

We also now have a Greater Manchester Join Dementia Research champion, Professor Roger Kay, who cares for his wife Dale who has dementia.  

Coming soon in 2024 we will have Join Dementia Research 2. This will be an even better version of our current Join Dementia Research service. The addition of volunteer records will hopefully link in with the volunteer’s patient NHS record. 

This year's focus:

For this year our focus has been to continue raising awareness about Join Dementia Research and to work regularly with our new Join Dementia Research champion. September is World Alzheimer’s Month and 21 September is World Alzheimer’s Day. The theme for this year is ‘Know Dementia, know Alzheimer’s’ and a special focus is on post-diagnosis support so we will be sharing people’s stories throughout the month. 

We are also asking for any volunteers or researchers recruiting participants through Join Dementia Research who have taken part in studies to tell us their story to inspire others. A case study from South London is a good example. So if you do know of anyone drop an email to comms.jdr@nihr.ac.uk and let our comms team here in Manchester know too because we can publicise it locally! 

Lindsay Ray 

Dementia Projects Officer

September 2023