Blog: Rising to the challenge?
25 February 2015
The Prime Minister’s fight against dementia is, he says, ‘a personal priority’, and certainly something he has demonstrated commitment to. Since he launched the Dementia Challenge in March 2012, he has continued to raise the issue and urge attention on several fronts “to deliver sustained improvements in health and care, create dementia friendly communities, and boost dementia research.” The latest refresh of the policy sets out the desire to make England ‘the best place in the world’ both for dementia care and support, and for research into dementia and other neurodegenerative diseases. These are big ambitions and the vision for the next five years has multiple aspirations from improved public awareness; to meaningful care for people diagnosed with dementia, and major increased investment in dementia research. These are all laudable objectives, but if they are to be more than a wish list, there needs to be better recognition of the complexity of the transformation that is envisaged.
In responding to the original Dementia Challenge, NHS South of England established its own Dementia Challenge Fund (DCF) in 2012 and allocated £9m across almost 70 projects to drive local improvements. Evidence from our independent review of the programme certainly found a great deal of activity, considerable innovation and real achievement; but it was also evident that it takes considerable time to embed change and see the results. In particular, the cultural change that is required to establish genuinely inclusive dementia friendly communities is profound.
The Dementia Vision details the “significant progress” that has been made. These are important milestones, but provide no basis for complacency. Much of the evidence of achievement to-date is a description of process rather than of outcomes. While it is good news, for example, that the original targets of establishing one million Dementia Friends and 20 Dementia Friendly Communities by March 2015, have already been exceeded, these are means to ends, and good evidence is required on what difference this is making in practice, and the durability of such changes.
The Vision document acknowledges the need for evidence:
“defining what good looks like for a system wide approach, understanding how good practice is sustained and promoting the economic and other benefits for communities of being dementia friendly.” [P.41]
But these matters are of vital importance. Evidence from the DCF and from other examinations of building Dementia Friendly Communities, for example, highlight the challenges and difficulties of achieving change, as well as the potential for transformation. Developing Dementia Friendly Communities requires partnerships between many different agencies. In addition to the health and care community this can include, for example, the built environment, public transport, high street shops and services, schools and colleges, and many others. The challenges of partnership working are legion and well documented and multiply with the number of partners involved.
The Dementia Challenge has undoubtedly been important in raising the profile of dementia and keeping it there. But it would be simplistic to conclude that the challenge can be overcome or judged to have been a success merely by listing a range of activity. The fact that one million people have become Dementia Friends is excellent, but the question of how they are changing attitudes and understanding around them remains. In short, getting the badge is the first step rather than the completion of a task. Similarly, having a number of high profile retailers and businesses, as well as individual High Street companies, declare their support for becoming dementia friendly is a positive development, but what difference is it making to the day to day experience and inclusion of someone with dementia and their carers?
Increasingly, there are some excellent qualitative case studies of the impact that can be achieved, but far more knowledge is needed about why things work in what circumstances, and why they don’t. The evidence that is emerging highlights the importance of personal commitment, passion and motivation. Without these it is very difficult to engage ‘the community’ in understanding what dementia means to them and why they should commit to being more dementia-friendly.
Perhaps one of the most surprising aspects of transformation has been the change in the culture of some care and health services, where it might have been expected that awareness was much higher in the first place. The key to bringing about cultural change particularly in care homes has been through empowering frontline staff and giving them a better understanding of dementia. The added benefits of this are not only evident in a better care environment for people with dementia, but in reduced prescribing of anti-psychotic medication, and increased job satisfaction with the potential for reducing staff absence and the high turnover which characterises the care sector.
Research evidence might also question the value of the enhanced service specification announced in October 2014 which is designed to provide a financial reward for GPs “undertaking a proactive approach to identify patients with dementia.” In fact, experience from the DCF and elsewhere points to the importance of GPs developing an understanding that there is intrinsic value in early diagnosis and positive things to offer patients and their carers through support in the community, rather than perceiving dementia as a hopeless diagnosis in the absence of a cure. Changing hearts and minds is likely to be far more beneficial in raising diagnosis rates than the crude offer of a financial incentive.
The dementia challenge is not a strategic task that can be achieved within a few years. The focus that has been brought by the PM’s attention to dementia is a beginning rather than an end. Targets are important but if real and lasting transformation is to be achieved and communities are to become tangibly different places for people living with dementia, the challenge will need continued attention and regular refreshing, and a much clearer focus on developing evidence on outcomes.