Published: 27 February 2020
This week Join Dementia Research celebrates its fifth birthday. Monday 24 February 2020 marked five years since the service was rolled out across the UK.
There is much to celebrate. Five years since it launched across the UK, Join Dementia Research has made it easier than ever for people to take part in research.
Thank you so much to everyone who has given their time and support to make Join Dementia Research a success. The generosity and passion of our volunteers, researchers, champions and partners is what allows the service to help advance dementia care and treatments.
To mark five years of the service, here are five of our favourite Join Dementia Research achievements so far.
1. Supporting improvements to treatments and care
More than 25,000 participants have now been placed in studies thanks to Join Dementia Research – 27,807 in total.
This is an amazing achievement – every one of those people has played a key role in helping to increase our understanding of dementia.
The studies they have taken part in will help scientists to develop effective treatments, find better ways to diagnose the conditions, and improve quality of life both for people who have dementia and for their families.
For instance last year US pharmaceutical company Biogen announced that their experimental Alzheimer’s drug, aducanumab, may slow Alzheimer’s disease.
This was thanks, in part, to some of our fantastic volunteers. 25 people took part in the ENGAGE study trial into aducanumab in the UK after being matched through Join Dementia Research.
Many Join Dementia Research participants have taken part in surveys, online activities and questionnaire studies as well. Recent examples include the Alzheimer’s Research UK Shaping Future Treatments survey, and GameChanger, a brain games app developed by researchers at the University of Oxford and supported by Alzheimer’s Society.
Helping out from home in this way can be just as valuable as taking part in a drug study. Surveys, questionnaires and other online activities help give scientists the knowledge they need for future dementia breakthroughs.
2. Putting patients in the driving seat
From the very beginning, Join Dementia Research listened to the voices of those with direct experience of dementia – not just researchers and healthcare professionals, but members of the public too.
Before the service even launched, a team of ‘public champions’ came together to discuss how it should work, and what the priorities should be. This team was made up of people living with dementia and carers.
The champions helped shape Join Dementia Research before it launched, and have continued to guide the service ever since. Today our dedicated team of research champions has grown from 12 to more than 60.
3. Bringing people together
Join Dementia Research doesn’t just bring together volunteers and researchers. The service only exists because so many dedicated people have come together to collaborate.
The service connects NHS and private health and social care organisations, universities, GPs, psychiatrists and neurologists and many other healthcare professionals all around the country.
What’s more, the UK’s three biggest dementia charities have united with the NIHR in order to make Join Dementia Research possible.
Alzheimer’s Research UK, Alzheimer’s Society and Alzheimer Scotland play a vital role. Not only do they help promote the opportunity to take part in research, they also run helplines to answer any questions about the service, and help people to manage their accounts.
4. Encouraging conversations about research
The National Institute for Health and Care Excellence (NICE) recommends that all people with dementia should be provided with information on research studies they could participate in, so they can make their own decisions about getting involved.
That’s why last year we launched the Join Dementia Research awareness tool, aimed to help any healthcare professionals who play a role in caring for and supporting people with dementia, their carers and families.
The online tool provides healthcare professionals with the skills and knowledge they need to have conversations with patients about taking part in research.
5. Getting more people involved
Over 45,000 volunteers have now signed up to Join Dementia Research. Although not everyone has taken part in a study yet, by simply registering their interest they have let researchers know who is available to take part, helping them to best plan their studies.
However there are still too many people who don’t know about the opportunity to take part in research.
That’s why we need your help. For our birthday, the best gift you can give us is to help spread the word so we can make an even greater difference in the next five years and beyond.
Send a birthday card
We’re not asking for gifts or cards for our fifth birthday. Instead, you can help us celebrate by sending this card to someone you know who might be interested in research.
It could be a friend or family member. Approximately 34.5 million of us in the UK know somebody with dementia. Imagine the difference we could make if we all told just one person about Join Dementia Research.
- Share a link: bit.ly/JDRcard
- Download a copy of this card to print (PDF, 687kb)
- Share this Tweet on Twitter
- Share this post on Facebook
Who will you send a card to? It could be someone living with dementia, a carer, a loved one, or anyone else you think should be aware.
The more people who know about Join Dementia Research and register, the more researchers can find the participants they need for their studies to reach their potential.