Developing policy that works for dementia: National and global lessons in what makes a difference

Box 9.1 Action plan to make and deliver an NDS

Step 1: What are the numbers? – how many people with dementia are there?

Step 2: What are the costs? – how much does dementia cost?

Step 3: What about the future? – what will happen to the numbers and the cost in the future?

Step 4: Is it broke? – if the system is not broke there will not be the necessary urgency to fix it.

Step 5: They would say that wouldn’t they? – is there independent corroboration of the need for change?

Step 6: Develop the strategy – making sure it has all the right elements.

Step 7: Implement the strategy – then we can all go home.

There are strengths and weaknesses to formulating an action plan in this way. It is simple, so tasks can be chunked into manageable bits, but it may miss sub-steps. Mapping the data from the reports and enquiries summarised by Andrew Chidgey for England onto this framework results in an outline with which to draft an effective narrative (see Box 9.2).

Box 9.2 Action plan to make and deliver an NDS for England

Step 1: What are the numbers? – 700,000, a definitive estimate of people with dementia in the UK. There is no more powerful tool than locally derived and relevant data.

Step 2: What are the costs? – £17 billion per year, a sum equivalent to a fifth of the whole health budget and more than heart disease, stroke and cancer combined.

Step 3: What about the future? – In the UK in just 30 years (i.e. in 2027) there would be a doubling of the numbers of people with dementia to 1.4 million and a trebling of the costs to over £50 billion per year. These figures make clear the need for a strategic plan for dementia and strongly support the need for this to be at a national rather than a local level.

Step 4: Is it broke? – The Dementia UK report and the National Audit Office (NAO) report, along with external data, suggesting that the UK is in the bottom third of European performance, all make the case for the system being ‘broke’.

Step 5: They would say that wouldn’t they? – Independent corroboration is vital. To gain credibility, it is very useful if dispassionate external assessment can come to the same conclusions. The NAO report (2007)¹ and the subsequent enquiry by the UK House of Commons’ Public Accounts Committee (PAC; 2008)² confirmed the findings of the Dementia UK report providing vital external validation.

¹Improving Services and Support for People with Dementia. London, National Audit Office, 2007.

²Public Accounts Committee. Improving Services and Support for People with Dementia. London, TSO, 2008.

In this, in England, we had the bones of our clear story. The next step was to articulate it as a whole and ensure that everybody comes to be telling it the same way. In terms of the Heath brother’s formulation of message types, this is one that moves from common sense (‘dementia is bad’) to uncommon sense (‘we should spend to save’) [9]. It has elements that correspond to the SUCCESs framework they suggest can help an idea or message to become ‘sticky’. In this the narrative below (see Box 9.3) is

Simple – finding the core of the idea – it’s bad, it’s big, we can do something
Unexpected – grabbing attention by surprising them – more than stroke, heart disease and cancer put together
Concrete – an idea that can be grasped and remembered later – 700,000 people, £17 billion
Credible – believability – evidence based, referenced
Emotional – so people see the importance – use of adjectives to describe impacts
Stories – empower people to use an idea through narrative – a single through line

Box 9.3 The UK narrative

In the UK we have 700,000 people with dementia and 200,000 new cases a year. It is a devastating disorder for those affected causing irreversible decline in global intellectual, social and physical functioning. The cost of caring for people with dementia is immense, £17 billion per year, greater than stroke, heart disease, and cancer put together. There are major problems with the health and social care system for dementia. Only a third of people with dementia ever receive a diagnosis and then often late in the illness when it is too late to prevent harm. There are misconceptions that nothing can be done for dementia. This is not true. There is a vast amount that can be done to enable people to live well with dementia. Finally, better dementia care is cheaper than the poor quality care we now provide (including £8 billion pa on care home places). We need to change the system to improve diagnosis and care; this will improve the quality of life of people with dementia and their carers and save money by reducing unnecessary institutionalisation.

Only gold members can continue reading. Log In or Register to continue