A policy crisis is like dementia, you cannot work out what to do until everyone knows what the problem actually is – says Professor June Andrews
The Department of Health in England has just published Dementia; a state of the nation report on dementia care and support in England. The report came out a few days before the December meeting of the G8 countries in London, which was styled a ‘summit’ on dementia.
The exact numbers of people with dementia and the rate at which prevalence is increasing is a matter for academic discussion. It is possible that the number affected is slightly less than predicted, either because we overestimated or because the few public health measures we are attempting – such as tackling smoking, obesity, and other risks to vascular health – are making a difference. Either way, the total is still like a telephone number – more than 800,000 in the United Kingdom alone – and the increase will be considerable, doubling in the next twenty years.
At the G8 summit the British Prime Minister David Cameron made a commitment to finding a cure by 2025. I do not mind if they do but it would be really surprising. The point is that dementia is caused by a range of diseases. Even if you fix Alzheimer’s you are still going to have to find a solution for things like vascular dementia, Lewy body dementia and a whole range of dementia creating conditions that cause up to half of the cases of dementia.
I am not feeling hopeless about it; the science is brilliant. It is just a bit optimistic to pledge to fix it by 2025. Particularly as public statements often muddle Alzheimer’s and dementia or treat them as synonymous so you can never be really sure what is being promised. Sometimes I wonder if the people making the promises are sure. There is so much muddle about all of this.
The biggest issue for England is its standing within the UK as the place where the fewest numbers of people with dementia have been given their diagnosis and started with any treatment or support. It is arguable whether Wales is at the same level but as England has published a ‘state of the nation’ report, they have drawn attention to themselves.
The problem is that the report card is less than frank. It describes the number of people who have been diagnosed with dementia in England correctly as less than 50 per cent of those who have the disease. However, the report claims that this puts NHS England ahead of most of what they call the ‘richer’ nations.
Depending on how ‘richer’ and ‘nation’ are defined, this cannot be true. If England is defined as a nation, then it is one of the four nations that make up the UK. Two of the other nations – Northern Ireland and Scotland – are 20 to 30 per cent higher than England. The figures that they use to compare against the current England figures are considerably out of date. And yes, England’s NHS is doing well compared with where other countries were four or five years ago. Compared with the rest of the UK today, it is not so good.
What this illustrates is a problem about the political handling of dementia. It is a major issue that has come to the fore in recent years due to some great political lobbying by the advocacy organisations; supported by research they commissioned that demonstrated that it costs more than cancer, heart disease and strokes put together. That huge cost, which is in excess of £20bn a year in the UK can be set against a sense that things are not terrific for people with dementia.
If the numbers increase it will not cost less and improving the quality of care will be difficult. Add to this the fact that people with dementia get stuck in parts of the health and social care system, which seems not to be designed for their support and wellbeing. In itself, this causes problems for other patients. Because the problem is so big, the government needs to be really transparent in the reporting on it and to avoid overstating what has been achieved.
When the UK government last announced a doubling of the amount of money to be spent on dementia research as part of the prime Minister’s challenge a couple of years ago, we were a bit concerned because twice not very much is not very much. The announcement at the 2013 G8 summit that spending would double again was done in such a way that we are not clear if this is a description of what was already offered or another doubling. The tendency to over egg what has been offered so far has led me to believe that it might not all be new money anyway. We find ourselves spending rather a lot of time looking gift horses in the mouth, these days.
A policy crisis is like dementia. You cannot work out what to do until everyone knows what the problem actually is. Honesty is the best policy because patients, families and the public forgive a lot but they do not forgive anyone who is discovered to have been deliberately misleading.
Professor June Andrews works out of the Dementia Services Development Centre at Stirling University in Scotland