Empowering people affected by dementia to drive research
Wendy Mitchell is a Join Dementia Research champion for Yorkshire and Humber. She tells us about her experience of getting involved in research and her contribution in the development of Join Dementia Research.
“When I was diagnosed with Alzheimer’s Disease no clinician on my journey offered me the option of taking part in research. Research was something I actively wanted to explore, yet nobody was giving me that choice. I have worked with the NIHR to launch a new service that enables people, wherever they live, to register for, and be matched to studies.
The NIHR’s mission is to improve the health and wealth of the country through research. One of the barriers to this is finding the right person for the right study at the right time. In my case, I experienced this first hand. My name is Wendy Mitchell. I was diagnosed with Alzheimer’s Disease on 31st July 2014. When I asked my Consultant why he hadn’t offered me the opportunity to take part in research he said that it would have taken up time in order to assess my appropriateness and that it wasn’t the right time. In fact research is something I was very interested in exploring – and as it turned out there were research projects going on that I could have been recruited to.
Reflecting on why my Consultant might have said this, I think there are a number of possible reasons. I am sure he thought he was acting in my best interest. He may have felt participating in research would in someway be detrimental to me; or an additional burden on him or his service. He may have thought there wasn’t any research that would be suitable for me; or didn’t have the time – or know how – to find out whether there was any research. Whatever the reason, my experience highlights an important issue with delivering research. Whether to take part in research should be my decision to make not my clinician’s. He should empower me to make that decision.
My Alzheimer’s meant I had to retire from work at St James’s Hospital in Leeds in March this year, but I have since been involved with over 30 other people affected by dementia working with the NIHR to launch a service that aims to address some of these issues. Join Dementia Research is a new online, telephone and postal service through which people can register their interest in taking part in dementia research. Data about us is then used with our permission to match us to studies, and enable researchers to contact us.
We know from research commissioned as part of our work that almost two thirds of the general public are willing to to be involved in dementia research. (This isn’t that surprising when you consider that dementia is the illness most feared by people over 50.) The same research identified that less than one in five people know how to go about getting involved in research.
Join Dementia Research aims to address this by harnessing the power of the internet, major dementia charities and the NHS to promote the opportunity to participate in dementia research much more widely. The NIHR launched a website in February 2015 which is promoted directly to the public through social media and by the Alzheimer’s Society, Alzheimer’s Research UK and Alzheimer Scotland. The charities also run telephone helplines through which people can register, and process postal applications. And increasing numbers of NHS memory services and general practices are promoting the service too.
Join Dementia Research enables NHS clinical services to offer patients a really high quality research service, focussing on the ‘right person’, with the right study at the right time. If my doctor had known about Join Dementia Research when I had asked him about research, whatever his own opinions, I like to think he would have told me about it. If he had done I’d have been enrolled in two studies within a matter of weeks.
There are now over 13,500 people registered with the service and more than 3,000 who have been enrolled in studies as a result. Of the people registered who have been diagnosed with one of the causes of dementia, over 30% of us are enrolled in studies, which just goes to show the demand from researchers!
Our next goal is to spread Join Dementia Research throughout the NHS and raise public awareness. The aspiration set for the service in the Prime Minister’s Dementia 2020 challenge is that 25% of everyone with dementia is registered on Join Dementia Research. If we just focus on people with a diagnosis this means getting 100,000 people signed up. Clearly this is a major challenge, but one that I think can be accomplished through working together as people affected by dementia, the NHS and researchers. The NIHR provides a fantastic environment in which to tackle challenges like this and has an impressive track record of working with patients, carers and the public to drive innovation in research practice.
I have a degenerative disease for which there is no cure. Research is the only way that future generations will not be affected by the same fate. I do not know how long I will have the mental capacity to continue to function independently but I am spending what time I have doing everything I can to make a lasting difference – and I encourage you to join me and the other Join Dementia Research Champions in defeating dementia through research with the NIHR.”
Wendy also received a Health Service Journal Patient Leader Award earlier this year. The judges of the awards, which named 50 outstanding patient leaders contributing to large scale change and shaping the future of healthcare, were impressed by Wendy’s experience, saying she is, “doing very good work” through the development of a network of patient and carer champions and the way in which she shares her story at a number of conferences and events across the country.
On receiving her award, Wendy said, “I’m just one of many people out there shouting from the rooftops to encourage others to be involved in research so it was very humbling to be selected for the award. We have to find an alternative to just hoping or wishing our loved ones don’t get dementia and this can only be achieved through research.”
You can read more about Wendy’s experiences on her blog: www.whichmeamitoday.