Government interest in dementia can cause problems for people with a long-term interest in improving the lives of people affected by it.
Governments, by their nature, must create the appearance of action and promise results. They are under pressure to imply they are making progress, even though no government can deliver prompt solutions for dementia. Rather, they offer a mix of funding for pharma research, public health messages and reorganisation of health and social care.
There is little evidence these are the best solutions, and no intelligibility on expected impact. Yet it is more and more difficult, or even unwise, to publicly challenge any of this. How could anyone engage with something that says it has the answer and has suborned critical thought?
Charities, together with governments, have predicted a dementia apocalypse, prophesying ever-escalating prevalence. It was almost funny when research recently showed lower numbers and slower increases than we’d been told. Stunned silence reigned while the spin-doctors worked out whether this was good news, a catastrophe or could be dismissed as bad research. Why was the answer not immediately obvious?
For the advocacy organisations, exaggeration is a good tactic to raise profile and funds, but governments and researchers should have tested the suppositions. Having all your policies based on one source of data causes an ‘own goal’ when the data is reversed. But in any case we know that profile and funds don’t always make the right difference.
The media’s dementia focus shapes our understanding of the condition – we rarely discuss how damaging that exposure is for health. The mixture of stories of hope, individual courage, miracle cures and dietary advice impedes more pertinent discussion. It creates a ‘politically correct’ consensus about what matters.
So what do the local and national NHS communications machines do to challenge the lazy and dangerous media lines on dementia? Does the NHS really need another news story that says staff have become ‘dementia friends’, ie reached a basic level of awareness about this common clinical condition? This doesn’t only happen in England: in Scotland some NHS nurses were recently congratulated in the record of the Parliament for completing an uncertificated CPD course in dementia. Imagine a headline that says “Five nurses now competent – a nation rejoices”.
Advocacy bodies in some countries have become an extension of government, happy to legitimise policy in return for access to funding. Charities and public servants share platforms celebrating the success of their projects without rigorous unbiased assessment of impact. Charities have a role, but should guard themselves against being relied upon or used as a human shield in national or local politics. Asking a user organisation rather than asking citizens is scarcely consultation, never mind research.
No politician can afford to admit that there will not be enough resources to meet future demand for long-term conditions, including dementia. To do so would imply they are incapable of governing. Investment of resources for maximum value will not happen unless this conundrum is addressed.
A vaccine or magic pill for all the underlying diseases that cause dementia is years away, if it will ever exist. The drug solution won’t cure the near million people with dementia now, or who will get dementia in the foreseeable future. I have great respect for the pharma community, but political focus on the search for the miracle cure takes the pressure off serious investment in initiatives that can improve the lives of people with dementia today. And tomorrow, even more will have to be done by families themselves. People need to start to get ready now.
The boundaries between state and personal responsibilities will be redefined because of reduced funding. In future who does what will be very different. Citizens and families need greater confidence and specialist knowledge about dementia now to delay the onset of symptoms and deal with dementia if it arises. As things stand, in years to come, they will have to be more self-reliant. Our grandparents did end-of-life care at home and could lay out a body. We do not expect to do this now. But our children will need to know how to manage end of life. The demographics and economics of ageing and frailty tell us so.
Together with Mark Butler of The People Organisation, as part of the Dementia Festival of Ideas, we have been working on a series of masterclasses on key issues that are not being discussed. This includes ethics, money, culture and the politics of dementia. There is more detail on the masterclass website, and the next discussion will be part of the International Dementia Conference on 3 and 4 November at the Vox in Birmingham.
What do you think?
Professor June Andrews is director of the Dementia Services Development Centre. Follow her and the centre on Twitter @ProfJuneAndrews @dementiacentre
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