Ten years ago, in 2002, dementia was not receiving public or political attention in England. Yet now in 2012, England is 3 years into a National Dementia Strategy, and the Prime Minister has just announced that there will be a specific series of policy initiatives related to dementia contained within the Prime Minister’s Challenge on Dementia – the only such health challenge he has issued. How has dementia become such a political force? I will argue that this has happened because of growing evidence about the impact of dementia and also because of the growing political potency of dementia as an issue.

The journey to a National Dementia Strategy

By the end of the first Blair government (1997–2001), the demographic challenge of our ageing population was becoming firmly established as a cross-government issue worthy of attention. The Treasury had recognised ageing as one of the five greatest challenges facing us, along with issues such as climate change. However, dementia was not recognised strongly within the policy agenda. In 2001, the Department of Health published a National Service Framework (NSF) for Older People, setting out the major areas of action that were needed in relation to older people. In the initial discussions about the NSF, dementia did not feature at all, and this was also true in relatively late drafts of the policy. However, eventually dementia featured, albeit fleetingly, under Standard 7 – Mental Health in the NSF. This limited reference was symptomatic of the fact that dementia was not recognised as a policy priority.

The main public advocate for action on dementia 10 years ago was the Alzheimer’s Society and some leading clinicians who specialised in the treatment and care of people with dementia and their carers. However, dementia was not featuring strongly in public discussion or the media, and political attention was very limited – certainly no party manifesto for a general election had commitments specifically on dementia in it in the way that cancer, for example featured so strongly.

The Alzheimer’s Society had for some time been developing networks of influence to ensure that the voice of people with dementia and their carers was featuring in political debate. This focused initially on gathering evidence and stories from people affected by dementia, publishing reports and encouraging people to become campaigners for change. As the charity grew, the scale of this activity and the evidence amassed increased as well.

In 2004, the National Institute for Health and Clinical Excellence published a review of a technology appraisal (assessment of value for money of a health intervention) that said that the four drugs available for people with Alzheimer’s disease were not cost-effective and should not be prescribed on the NHS. This led to the development of the most assertive and focused campaign the Alzheimer’s Society had held to date to reverse the decision. An umbrella body ‘Action on Alzheimer’s Drugs’ was launched with many Royal Colleges and charities as members. The Daily Mail agreed to support the campaign, and campaigners organised activity in MPs’ constituency surgeries, through letter-writing and by going on protest marches. This established a profile for dementia which had not been seen before.

Through the NICE review process, the drug guidelines changed so that they advised doctors to prescribe only to people in the moderate stage of Alzheimer’s disease. However, this decision was taken to judicial review (JR) by pharmaceutical companies, with the Alzheimer’s Society registering as an interested party to the JR. The JR secured some changes to the NICE guidance that gave more flexibility to clinicians in interpreting the guidance while leaving the stated guidance largely unchanged. The effect of the campaign on Alzheimer’s drugs was noticeable in the interactions that the Society had with politicians and in terms of the access that the organisation had to Ministers and officials.

At the same time as the NICE decision on access to drug treatments was being debated, NICE had been working to create a clinical guideline on dementia with the Social Care Institute for Excellence. This was published in 2006 and set out the evidence for treatment and care of people with dementia and their carers. This was an important step in securing agreement on what the approach and interventions should be on dementia on the basis of the evidence available.

In February 2007, the Alzheimer’s Society published work it had commissioned from King’s College London and the London School of Economics. This for the first time set out the estimated numbers of people with dementia in the UK (700,000 in 2007) and the estimated economic cost (£17 billion in 2007). This evidence was used by the National Audit Office when it published its report on dementia in July 2007 in which it stated that dementia was a condition requiring urgent attention from the government given the low rates of diagnosis and the poor use of resources on dementia delivering poor outcomes for people. In response the government committed to develop a National Dementia Strategy. A draft was developed, consulted upon, re-worked and then published in February 2009. The national dementia strategy established three key areas of priority:

• improving public and professional awareness about dementia
  
• early diagnosis and intervention
  
• improving quality of care.