Life on the road as an international professor has its surreal moments.
Speaking at the AARP (American Association of Retired Persons) Conference in Washington this week was a great opportunity to get a sense of where the US is now on dementia. The tone was serious, sober and thoughtful. There is clearly huge potential for things to go well in future.
So it was bizarre to be there with Jeremy Hughes, Chief Executive of the Alzheimer’s Society in England, appearing to accept the myth that “the UK” is the world leader in dementia. This is not unusual in a UK setting but it feels increasingly awkward in an international context as the next election looms at home. It is difficult to see how the carefully constructed myths about how progress has been made as a result of the Prime Minister’s Dementia Challenge will survive a change of government.
Of course some things have improved as a result of the attention. But we have to be objective about how much. The culture still allows a government figure, when challenged by DSDC this week about publishing watered-down guidance, to say “surely something is better than nothing”. And just as an aside it was also odd to see a civil servant from Scotland being hailed as the author of the UK success at an international conference. There are lots of splendid things happening, but I don’t think we can be described as ”a success" yet. If we get smug we’ll get caught. And after the recent voting, it is particularly odd to try to give the impression that the countries of “the UK” are working in concert on this.
But it got even more surreal when “Cracks in the Pathway” was launched at the same time in London. The message of the sobering, but not unsurprising, report from the Care Quality Commission, spotlights the huge variations in care across England. So as the UK was being spun abroad as an exemplar, at home the Alzheimer’s Society was having to react with astonishment at concrete evidence of failure of its alliance with government to make any real progress on what people with dementia were actually experiencing. Although there have to be some concerns about the robustness of the headline-grabbing claim that 9 out of 10 people are likely to experience poor dementia care at some point in their lives, it is entirely appropriate for the CQC to call time on the spin.
Whatever good has been done over the last three years, it has always been clear that the Prime Minister’s Challenge, and the relationship between the Alzheimer’s Society and Government, have created the sort of dangers that arose in the fairy tale of the Emperor’s New Clothes. They are not altogether as naked as the day that they were born, but they should slow down on drawing attention to themselves until they’ve got their pants on. I got the impression in Canada this week that policy makers and clinicians were quietly and politely getting on with the job, and if any people affected by dementia had complaints it was because their politicians were going for headline grabbing ideas that were unproven, copied from the UK, and “better than nothing.” If we show off, we have to take responsibility for those who copy us. It’s a matter of ethics.
One lesson I hope the USA take from the UK experience is to keep it real. If so they can avoid this cycle of promoting progress without evidence, of parading inputs and not attending to outcomes and of requiring compliance with a single view rather than encouraging genuine diversity of action.
The AARP Conference has given me hope that if they work with the right people the problems in the UK can be avoided. I am less hopeful of what is going to happen next in the UK as the bubbles start to burst.