Handing Out Hope
Chris was given a diagnosis of vascular dementia and Alzheimer’s in late 2012, aged 51. As Jayne described, “After the diagnosis, we left the doctor’s consultation room feeling hopeless, but then when we became involved in a local research project – a project about peer support, upskilling people with a new diagnosis of dementia, and giving them information about things they could do on their own, to take back some of the responsibility for managing their condition. Whilst it was a non-clinical research, it did actually make us feel better! That gave us our hope back.”
Chris and Jayne have the following advice for people thinking about becoming a Champion for Join Dementia Research:
- If you’d like to become a Champion, you’re already half way there.
- Don’t give yourself a big work load. Just do what you can, when you can. You don’t have to go every Tuesday morning or whatever – it’s as much or as little as you’re able and want to do.
- It can be as simple as dropping some leaflets off when you next go to the GP or the chemist. Or just put on a Join Dementia Research T-shirt and give out leaflets at whatever is going on – garden fetes, car boot sales and open gardens. Just invite yourself along – it can take as little time as half an hour.
- Use Facebook, Twitter or your own networks. You can post links to information about dementia, talks and events and the Join Dementia Research Facebook and Twitter pages. In just a few minutes you can get that information out to an awful lot of people. And it’s something you can do from your armchair!
- If you want to get more involved, you can become a Join Dementia Research Champion. We have regular meetings and they provide you with leaflets and information online. Find out more by emailing firstname.lastname@example.org – let them know your name, contact details and a brief description of how you would like to get involved.
- If you’re a person with dementia, and you’re able, then getting involved beats staying at home living with dementia. You could be out helping others and yourself instead. Being active and social really helps.
The things that have happened to me since I was diagnosed…
Hilary has the following advice for anyone thinking about becoming a Join Dementia Research Champion:
- Recognise your strengths and your knowledge and think how you can apply those. If you’re not sure about how you could use your experience, talk to one of the Join Dementia Research organisers (details below) and ask them what they think. There will always be a way you can contribute.
- There’s a lot you can do without necessarily having to stand up in public. Just get involved
in some simple way, even if it’s just going down to your local Memory Café and making sure that everybody there has heard about Join Dementia Research. Talk to your friends and your networks. You don’t have to do anything out of the ordinary. It’s just a topic of conversation for one day.
- Start up conversations about dementia research with the people you know, whether you think it’s good or bad, how to get people involved, and what could be done to make it better. Even if you don’t want to take part in research yourself, you can still spread the word about it.
- Public speaking is not the only communication channel for Join Dementia Research. A lot can be done through local networks, like the Hand Out Hope campaign (handouthope.today), where we are trying to get all the clinicians in memory clinics to hand out the Join Dementia Research leafet. Giving out leafets, which might only take a few minutes, is a very good a way to get information about research out to people with dementia, and importantly will give them hope again.
For more information visit: nhs.joindementiaresearch.nihr.ac.uk
Integrating Research Champions within a Trust
- A multi-disciplinary oversight group provides a range of valuable insights and promotes buy-in from the different groups of professionals
- Senior level support for the initiative is essential, to give the lead the authority to ask each clinical team to put forward a candidate for the Research Champion role
- A motivated and supportive leader is essential to hold the vision, and encourage staff to sign-up and stay engaged
- Research Champions need training at the start to build their confidence in talking about research and ongoing support to manage any changes and maintain their commitment
- Peer-to-peer communication is an effective way to recruit Research Champions and provide informal support
- Becoming a Research Champion can be the first step on a new career path, particularly for nurses – it is important to find ways to nurture and develop their research skills