David Cameron has boosted dementia awareness but more needs to be done

http://www.theguardian.com/social-care-network/2015/may/18/david-cameron-boosted-dementia-awareness

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David Cameron’s fight to improve dementia care is, he has said, “a personal priority”, and certainly something he has demonstrated commitment to.

Since launching the Dementia Challenge in March 2012, he has continued to 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 issued earlier this year sets out the desire to make England the best place in the world for dementia care and support, and for research into neurodegenerative diseases. These are laudable objectives, but if they are to be more than a wishlist there needs to be better recognition of how complicated the transformation will be.

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In 2012 NHS England South established its own dementia challenge fund and allocated £9m across almost 70 projects to drive local improvements. Evidence from our independent review of the programme found a great deal of activity, innovation and real achievement, but it was also evident that it takes considerable time to embed change and see results. The cultural change required to establish genuinely inclusive dementia friendly communities is profound.

The Prime Minister’s Challenge on Dementia details the significant progress that has been made. But we cannot afford to be complacent; much of the evidence of achievement to date is a description of process rather than outcomes. While it is good news that the original targets of establishing one million Dementia Friends and 20 dementia friendly communities by March 2015 have already been exceeded, these milestones are means to ends. Evidence is required on what difference this is making in practice, and the durability of these changes.

But these matters are of vital importance. Evidence from the Dementia Challenge and from other examinations of building dementia friendly communitieshighlight the challenges. Developing successful communities requires partnerships between different agencies: health and care; the built environment; public transport; high street shops; schools and colleges, and many others. The challenges of partnership working are legion and multiply with the number of partners involved.

The Dementia Challenge has been important in raising the profile of dementia, but it cannot be judged as a success based on just a list of activities. The fact that one million people have become Dementia Friends is excellent, but the question of how they are changing attitudes and understanding remains. 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 lives of someone with dementia and their carers?

There are some excellent qualitative case studies of the impact that can be achieved, but more knowledge is needed about why things work in some 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.

One of the more surprising aspects of transformation has been the change in the culture of some care and health services, where a high level of awareness might have been taken for granted.

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. Increased job satisfaction as a result also has the potential to reduce staff absence and the high turnover so common in the social care sector.

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Research might also challenge the value of the NHS payments scheme, announced in October 2014, where GPs are given a financial reward for identifying patients with dementia. Experience from the Dementia Challenge Fund and elsewhere points to the importance of GPs developing an understanding of the intrinsic value in early diagnosis, as it can help to offer patients and carers support in the community – rather than seeing dementia as a hopeless diagnosis in the absence of a cure. Changing hearts and minds is likely to be more beneficial in raising diagnosis rates than the crude offer of a financial incentive.

The dementia challenge is not something that can be achieved within a few years. The focus that has been brought by Cameron’s attention is a beginning rather than an end. Targets are important but if lasting transformation is to be achieved and communities are to become better places for people living with dementia, the challenge needs continual attention and more evidence of what works.