The Department of Health's state of the nation publication at the end of 2013 illustrates the lingering problems with dementia 5 years on from the publication of the National Dementia Strategy:
- lack of good quality research into interventions and in particular the cost-effectiveness of support for people living with dementia
- out of date data used to measure 'success'
- policies which often lack any evidence base, but do at least keep dementia in the public spotlight
- commissioners of statutory services with shrinking resources for existing services let alone new, unproven, ones with the spotlight being a stick, not a carrot;
- traditional mental health specialist services wanting to provide clinically sound diagnosis, treatment and other interventions but being expected to focus on increasing numbers which are poor markers of service quality;
- newly commissioned services more often than not provided by 'voluntary sector' organisations at state cost. (The most effective bidder for such funding is usually the Alzheimer's Society which surely affects its position as unbiased national champion of all things dementia.)
Quite a list.
But what does this mean for the person with dementia, their family and carers?
There is increasing evidence of involvement in policy-making and commissioning, but it remains a challenge to ensure the views of a few properly represent the needs of the majority. Taking on board the views of carers must not diminish the views of those who actually have the condition.
The chances of being diagnosed are rising, but if you present to your GP early you have an equal chance of being diagnosed with the even more unclear Mild Cognitive Impairment.
Once diagnosed with dementia you have more chance of access to support services, if you're willing to accept them and the diagnosis (many still are not, until at least one crisis has occurred).
You may stay at home for a little longer as a result but we're not sure. You are still likely to spend your last years in a care home and be admitted to hospital where you may die - even if you'd prefer to die at home and even if you have expressed your preferences in advance.
So are we on the right track?
There is a move to redefine dementia as a long term condition rather than a mental health condition. In many ways it fits better alongside other progressive organ failures, but is it really long term?
There are also moves to improve community acceptance of those living with dementia, but it's hard to define what makes a community 'dementia friendly'. Perhaps dementia should not be considered a medical condition at all as this gets in the way of communities adapting naturally to changes in cognition and behaviour of some of its members. In which case should this approach be state funded or not?
One thing, though, seems clear: despite David Cameron's confident assertion, having doubled a small amount of research investment following the G8 summit, a 'cure' for dementia remains sufficiently out of reach for people with dementia, commissioners and providers not to need to consider it seriously.
So what do we do?
We must continue to improve services and support, but also shift our focus more firmly onto prevention in research and practice.
Published evidence suggests that modification of risk factors earlier in life can reduce your chance of developing dementia. Reduced risk means reduced fear and reduced potential cost to individual and state.
We know from other disease areas that prevention can be extremely cost-effective. Many of the dementia prevention strategies are the same as those for cardiovascular disease, diabetes and obesity.
If that isn't enough, prevention also fits very snugly with concepts of community robustness and schools initiatives - and if dementia is the most feared condition in the over-50s then in that age group lays the best opportunity to encourage and support individual lifestyle modification where at younger ages we continue to fail.
You might say that we're already doing cardiovascular prevention so why do more: but we still lag behind most developed countries in cardiovascular disease rates so more can be done, and perhaps if we are currently modifying risk factors sub-optimally we prevent people dying of massive heart attacks and strokes but not smaller non-life threatening events which then increase the risk of later dementia.
Dr Nick Cartmell
GP, Ashburton Surgery
Associate Clinical Director, Strategic Clinical Network (Dementia) South West