Tom Dening is Professor of Dementia Research at the Institute of Mental Health, University of Nottingham. He tweets @TomDening. Here he outlines why this week has many reasons to be a big one for dementia.
Although dementia is rarely out of the news and indeed often on the front pages of certain national papers, the start of this week (23rd February) is a biggie even by dementia standards. That’s for two reasons: one, the latest version of the Prime Minister’s Dementia Challenge (Monday), and, two, the launch of Join Dementia Research (Tuesday).
Whatever David Cameron’s political and diplomatic legacy will be – the electorate is poised to cast its verdict this Spring – he undoubtedly deserves credit for taking a personal lead on dementia. The first PM’s Dementia Challenge was published in 2012, three years after the National Dementia Strategy, and now we have the follow-on version. For some reason it is the Challenge on Dementia 2020 even though my calendar indicates we are still five years short of that date.
The 2012 Challenge had 14 commitments, grouped under three headings: Driving improvements in health and care; Creating dementia friendly communities; Better research. (Am I alone in disliking the word ‘driving’ in this sort of context? It implies coercion.) A report from the appointed leaders of these three themes was published in May 2014 and picked out successes in the areas of improving diagnosis rates; creation of over 50 dementia friendly communities; and a doubling of funds for dementia research during the period. The matter of dementia diagnosis rates became quite heated with much discussion about incentives for GPs to (over)diagnose dementia, also about what was the true number of people with dementia in the UK, since this denominator would of course affect the diagnosis rate. The May 2014 report also highlighted some areas in need of special attention: global action; increasing public awareness and understanding; and integrated care and support. The last of these is trotted out regularly but, with the hammering that local authority social services have taken of late, it is difficult to see how this is going to be a reality. Preserving NHS funding is fine but actually most people (even older people and people with dementia) are at home not in hospital.
The 2015 (to 2020) Challenge takes up these threads. It has around 20 aspirations. No fewer than eight of these relate to dementia research, of which the most novel is the proposed establishment of an international dementia institute based in England. How that will work, how it will be funded and who will belong to it are obvious key questions. In two of the aspirations, the words ‘on track’ appear: ‘Funding for dementia research on track to be doubled by 2025’; ‘Cures or disease modifying therapies on track to exist by 2025…’ What does ‘on track’ mean? We presumably won’t have got there by 2020. It doesn’t commit the present administration or even the next one to very much, does it?
There are some other interesting aspirations, not least the plan to create another 3 million Dementia Friends and to make this into a global movement. It is easy to be a bit sceptical about Dementia Friends – a short training session using some interesting metaphors for dementia, some of which work better than others – but it has encouraged a huge number of conversations about dementia that wouldn’t otherwise have taken place. That’s definitely a good thing. Giving GPs a leading role in co-ordinating the care of people with dementia makes a lot of sense though we should be aware of how oppressed they are feeling just now, so I wonder if they will all greet this with enthusiasm.
By 2020, we hope to see 10% of people with dementia participating in dementia research and altogether 25% signed up with an initiative known as Join Dementia Research. JDR cracks the champagne today (Tuesday), although it has gone quietly live already. It’s a collaboration between the National Institute for Health Research (NIHR), Alzheimer’s Research UK, Alzheimer’s Society and Alzheimer Scotland, with funding from the Department of Health. What JDR addresses is that at present it is difficult for people with dementia (and their families) to get access to research studies, including trials of new treatments. This is for all sorts of reasons – studies aren’t well enough publicised and clinicians often don’t think of research when they are seeing patients. However, the biggest obstacle is a protectionist view that prevents researchers from approaching potential research patients directly, a huge obstacle in practice to dementia research. I wish similar safeguards applied to all the purveyors of junk mail that assault my mailbox!!
JDR provides a platform for people to register their interest in participating in suitable studies. The database can be searched by researchers looking to recruit suitable participants and, since they have already given their permission to be approached, this cuts out the barriers to linking up patients and studies. The prospects indicate that this initiative may be very popular. There were already nearly 2000 people signed up before the launch, and the regional Clinical Research Networks across England have all been identifying suitable studies that can be included in JDR.
So who knows, this inclement week could signal climate change in dementia research?