Professor Knapp explains the role of CPEC (formerly PSSRU) over the past decade in helping to put dementia care policy in the spotlight.
Ten years ago there was not the emphasis on dementia that there is today, partly because prevalence was a lot lower, partly because there were few effective treatments available, and partly because of the stigma associated with the disorder. Early CPEC work on the needs of individuals in care homes included a cognitive impairment measure – usually called “confusion” – but in the 1960s and 1970s only a tiny proportion of people in care homes in England had dementia. Today that figure is at least two-thirds.
The baby boom generation means we have many more people moving into older age and, because of improved public health and health care, a far greater proportion survive into their 80s and beyond. In broad terms the prevalence rate of dementia doubles in each five year age band beyond the age of 65, rising from one in 100 for 65-69 year olds to one in three for those aged 95+. So, as the UK population has aged, the number of people with dementia has grown very rapidly.
An important step for me with respect to dementia research was when Professor Martin Prince (at King’s College London) and I won a grant from the Alzheimer’s Society to produce the Dementia UK 2007 report. The study looked at the current and future number of people with dementia, service models and patterns, and for the first time estimated the current and projected costs of dementia in the UK.
The report helped to raise the profile of dementia considerably: the Alzheimer’s Society had the right contacts, the timing was good as politicians and decision-makers were starting to be aware of the issues, and the report luckily received high profile media coverage. We didn’t provide any solutions or suggestions on how to address the dementia issue; but what we did was to quantify the challenge.
That was a starting point and helped to get things moving nationally. The National Audit Office then carried out its own inquiry and the National Dementia Strategy for England followed in 2009, with both these documents making heavy use of our 2007 report as well as commissioning follow-up analyses from us. The then National Clinical Director for Dementia and co-author of the Strategy (Sube Banerjee) was quoted as saying that policy action had been initiated by the Dementia UK 2007 report, and it continues to be widely cited, including in the Prime Minister’s 2012 Challenge on Dementia. The Alzheimer’s Society has just launched Dementia UK 2014, which revisits the prevalence and cost estimates.
David Challis had been doing work on dementia in CPEC since the 1980s, but it took some time before it became a major topic of CPEC research, with lots of projects underway at Manchester and LSE, including a few that we do jointly. The subject combines many of the challenges that are typical of a CPEC study: it straddles health and social care; the outcomes are hard to define and measure; it has major inputs from unpaid carers and communities; it costs a lot; it presents a major challenge for the social care financing system; and there is no cure or simple care solution.
Today CPEC is involved in three types of dementia work, which together combine longer-term scientifically robust evaluative activity with shorter-term (hopefully still robust) policy commentary.
One group of studies covers evaluations of dementia interventions, usually through randomised controlled trials. These studies are funded by NIHR or the research councils and are always in collaboration with other universities, particularly people with clinical expertise.
We are interested in evaluating models and delivery of care interventions, medications, psychosocial interventions and carer support; this work usually includes an economic evaluation. These studies are proving to be productive with good impact. We do not carry out studies of drug trials and are not funded by pharmaceutical companies.
Second is modelling work that provides projections of future dementia prevalence, service demand and costs. Projections have been an important CPEC theme for 20 years, since Bleddyn Davies and Raphael Wittenberg set up the long-term care finance programme at CPEC LSE.
Following some previous CPEC projection work on dementia (led by Adelina Comas-Herrera a few years ago), we have recently secured £2.4 million of funding from the ESRC and NIHR for a big study called MODEM: Comprehensive Approach to Modelling Outcome and Cost Impacts of Interventions for Dementia.
We will project the number of people with dementia up to the year 2040 and look at their needs, their likely support from family carers and the costs of providing formal support. We will also simulate the outcome and cost implications of making better care and treatment available (evidence-based, for example from some of our own trials).
So MODEM is forward-looking not only in terms of problems and challenges but also possible solutions. The modelling simulations will be sophisticated and scientifically robust. At the end of the study we will provide a legacy model online for other people to use.
Our third dementia work stream includes shorter-term responsive pieces of work, mainly commissioned by government departments and third sector organisations, and mainly with the aim of informing policy discussions.
Recent examples are work I led earlier this year to monitor progress since the National Dementia Strategy and the Prime Minister’s Challenge on Dementia, a rapid piece of work for the Secretary of State for Health on the potential economic impact of a disease-modifying treatment for dementia, and our work funded by the Alzheimer’s Society to produce the Dementia UK 2014 report.
We generally use our evaluation work as the starting point for investigating answers to key dementia policy questions, both in the UK and internationally. (For instance I am now a member of the World Dementia Council set up by the G7 states.)
Overall, there are now more than 20 ongoing CPEC dementia studies at LSE and several more at Manchester. Unless someone suddenly finds a cure for the condition – and of course dementia is a clinical syndrome, with a range of causes – long-term care for older people will be dominated by the ‘dementia challenge’ for many years to come. It will therefore also remain a key topic area for CPEC.