Championing ‘Join dementia research’
MORE than one thousand people have now registered their interest in taking part in dementia studies across the country, as part of the ‘Join dementia research’ service.
The service will be launched early next year, but it is already been promoted at a regional level across the country by local champions.
We interviewed Sue Boex, who is one of the 23 regional JDR Champions. Sue became a carer for her father after he was diagnosed with dementia, and feels passionate that more research is needed.
Why did you get involved in JDR?
Unfortunately if you get a dementia diagnosis there is very little hope because there’s no cure. People must have hope and help to live and cope with the disease more comfortably. That’s why I’m passionate about research to find a cure. We need to get more research done and get more people taking part – the JDR service is one way we can do that.
‘Join dementia research’ is for both the researcher and the person with a diagnosis and you can also sign up if you’re a healthy volunteer.
The researchers enter their projects and the patients put on their personal and health details. If they match up, then the researchers can get hold of the patients straight away. It will really help speed up the process of finding people to take part in research and help the patients find out what is going on in their area and nationally.
How were you involved at the start?
We had a meeting for three days! There were a large group of us, including two lay people and we started from scratch. We designed the whole thing – the colours, layout and thought about what questions to ask people and what the researchers wanted, and discussed governance, policies and security.
So our views were taken into consideration from the beginning. For example, it will be important for patients and carers to go back to the website and get updates, but we realised that people have memory problems and won’t remember to do that, so the team have been thinking about how to send out reminders.
How are you involved now?
The project has taken about two years to get off the ground and now we’re preparing for the national launch. I’m one of the Champions. We have had some media training and we have got posters and leaflets. I’ll be going out and doing the ground work locally, giving talks about the service and encouraging people to sign up.
How will you be helping and encouraging people to sign-up to JDR?
By trying to raise awareness. People might not be used to the internet, so we have made sure that there are other ways to add your details. There are paper applications and if you’re in trouble you can go to one of the two Alzheimer’s charities and they will help you through the process.
Another worry for people is putting their details onto a computer, when they might not want others to know they have got memory problems. So we have put all the safeguards in place to keep the information confidential. I know how carefully all these things have been gone into so I’ll be able to reassure people that they can have confidence in the system. As a patient, you can obviously look at all the research summaries, and can express an interest in finding out more about studies. It is also an important feature that a carer can register for the people they care for.
I also want to reassure people that they won’t be pressured into anything. If a match is found then the researcher will contact them. Then they have the opportunity to ask as many questions as they want before they decide whether to take part.
If it’s something they don’t feel comfortable with, they don’t have to say yes. You can do as much or as little as you want to.
What do you want to tell people about JDR?
The message is “Help us to beat dementia”.
We all want a cure – it’s a simple message and I know that people with memory problems are desperate to be on a research programme. It’s up to everybody to do their bit because we can all get this awful disease. I want people to sign up and visit the website – so that people become more aware. There’s a lot of research going on. There’s a lot to be positive about, but also lots more work to be done. We need everybody to help.
Have you been involved in a study on the service? What did you learn? If you are interested in telling your story, please complete the online sign up form.