Battling for dementia research
I was genuinely shocked recently to get a LinkedIn congratulations on my 16th anniversary at Alzheimer’s Research UK. It really made me think how the world has changed and how we’ve pushed on in the battle to champion dementia research. When I joined the charity in 1997 the majority of people did not know the word Alzheimer’s, and most definitely didn’t understand it was a disease.
Since then, we’ve been fighting to put dementia on the agenda. In recent years, awareness of the disease has risen to new levels – but as ever, there are still improvements to be made.
Onto the agenda
In 2008, a major catalyst for this increase in awareness was our Patron, Sir Terry Pratchett. Sir Terry was frank about his condition in a way that very few in the public eye had been before. He boosted public discussion of the disease. He harangued politicians and tirelessly campaigned for them to sit up and listen. We owe him a lot.
We still have work to do, not least to educate people about the many other causes of dementia outside of Alzheimer’s, such as dementia with Lewy bodies, vascular dementia and the frontotemporal dementias. And while general awareness of dementia may be better than ever, as Sir Terry himself suggests in his blog, there’s still a sense that many of us believe dementia to be an inevitability of age, rather than being caused by diseases. It’s a shame as inevitability can breed nihilism, but there’s real cause for hope; we have beaten diseases before and will do so again.
In the past, it would also have been unthinkable to have dementia as the Prime Minister’s personal challenge, let alone having the issue tabled to the G8 under the UK’s presidency. Alzheimer’s Research UK has been instrumental in getting the government to increase spending on dementia research and to push dementia up the agenda. We’re investing more in our campaigning work because of the opportunities to take big strides with research under the Prime Minister’s Challenge and to ensure that research efforts continue to increase, whatever the future government may be. Ministers have agreed that spending £66m on research a year on all aspects of dementia research by 2015, while an improvement, is still ‘a drop in the ocean’ compared with other major diseases.
We have over £20m invested in research at the moment, with a big increase in new projects supported this year. I still get a huge buzz when we award grants as we help assemble the next piece in the dementia puzzle. There’s so much more we want to do and it’s what drives us all, especially because we now have some promising areas that we know need to be pushed forward urgently.
Along the way, I’ve met truly inspiring people who have really kept me focused on how we’ve got to make a difference. Meeting people personally affected by dementia and hearing their stories still affects me deeply and meeting great scientists with ideas still makes me want to rush them to the lab or the clinic to get going.
That’s why I love my work with Alzheimer’s Research UK and our absolute dedication to research to benefit people with dementia. My job might change every year, but it remains a life’s task and passion.
About the author
Rebecca became Chief Executive of Alzheimer’s Research UK in June 1997. During her time leading Alzheimer’s Research UK, the charity has funded over £44 million of pioneering research as well as innovative work on genetics, brain imaging, treatment development and clinical research. Rebecca is a passionate advocate for dementia research. In 2008 she met with then Prime Minister Gordon Brown alongside Sir Terry Pratchett, a watershed moment in raising the profile of dementia research. In 2010, the Dementia 2010 report was released highlighting the impact of dementia on the UK economy and lack of investment in dementia science. Rebecca now sits on the Research Champions Group of the PM Challenge, following on from the work of the Ministerial Advisory Group for Dementia Research.