The English 'Dementia Vision' is a despotic dystopic farce

Dystopia

It’s a moot point whether the new ‘owementia Vision’ document, formally called the ‘Prime Minister’s Challenge on Dementia 2020’ will last longer than the current Prime Minister. Any reasonable person would feel that this has overstepped the line of political decency in being excessively partisan.

It was not so much published yesterday, but, rather, sneaked out under the RADAR of an announcement about how there were now one million ‘Dementia Friends’. Of course, this target was effectively gamed, by the offer of online routes for applying for a badge, and opening up new jurisdictions in the United Kingdom.

The new policy document is here.

One of the offerings in the new document is the reach-out to get a further 3 million dementia friends. Raising awareness of what dementia is is undeniably an important part of policy. But why could this project not been delivered across a number of dementia charities? Charities other than the Alzheimer’s Society have had their activities strangled off in an unbearably toxic atmosphere. The original press release claimed that “the £2.4 million programme is funded by the Social Fund and the Department of Health”. There is clearly also ‘mission creep’ in funding of this project. There then came the lucrative pitches for advertising agencies for this project as advertised by Public Health England. There’s overwhelmingly a need to lead a fight against dementia not necessarily to keep creative advertisers in gainful employment. How is it possible that the funds for a further reach-out for Dementia Friends can be successfully secured when social care is on its knees? Shouldn’t the responsibility of an independent dementia charity to campaign against a devastating situation in social care funding which has not been ring fenced since 2010? With nine out of ten care homes not meeting adequate standards for people living with dementia, David Cameron’s claim for the UK to the best place on the planet to have dementia is outrageously beyond contempt.

The first English dementia strategy was indeed an excellent document, making use of a wide variety of evidence; not simply documents produced by the Alzheimer’s Society. There is a vast number of Alzheimer’s Society initiatives mentioned, but not even with the most polite sop for others in the third sector. This complete lack of plurality in the third sector in dementia is reflected by the bare mention of specialist nurses, which have a huge amount to contribute in proactive case management. The fact that ‘Dementia Vision’ reads like a multi-author chain letter, rather than a coherent vision, is for me exemplified by the lack of acknowledgement that a national network of clinical nursing specialists in dementia would be in a great place to offer training and education of the workforce in dementia, and its different diagnosis.

But clearly this campaign has become severely muted in the rooms of the Downing Street and its friends, whilst the Health Services Journal is devoting a formidable supplement to it shortly. The whole issue of how people with dementia can avoid crises or hospital is a key one in health service provision, and whilst there is barely a mention of social care in the ‘vision’, apart from a ‘better care workforce’, there is mention of the infamous “Better Care Fund”:

better care fund dv

 

But even as Chris Ham, CEO King’s Fund, says, the Better Care Fund is not THE solution. And one of the main solutions on offer, with proper coordination of care, personalised care plans and data sharing, comes in the form of ‘whole person care’, completely airbrushed from the ‘Dementia Vision’ document.

Better Care Fund

The whole issue of the personalised care plan, as a mechanism for involving personhood throughout someone’s time post diagnosis with dementia, seems to be ignored, and the contributing members of ‘Dementia Vision’ are utterly wrong if they feel that they only apply to advanced care planning:

pcp

This is completely opposed to the current evidence-based literature. But this conveniently gets round the issue of clinical nursing specialists who are there at all points after the diagnosis of dementia. An Alzheimer’s Society “Dementia Adviser” will do. Funny that.

But I suspect that this is an inappropriate cheap political point, rather like the title of the document ‘Prime Minister Challenge on Dementia’, rather than a genuine disregard of important policy both here and abroad. Personalised care plans are covered in detail in the work from the Carers Trust and the Royal College of Nurse, and simply because of this disregard of this ‘Triangle of Care‘, together with the airbrushing of social care, my inclination is to flush the ‘Dementia Vision’ document down the toilet.

Dementia V|ision

How the excellent 2009 ‘Living well with dementia’ strategy document got transmogrified into a water-downed ‘dystopic’ wishlist for the Alzheimer’s Society is anyone’s guess, but the chaos in its formation is indeed charted well in Hansard. Even originally in February 2004, and a few months afterwards, the current Government were maintaining a pretence of strategy rather than a wishlist of ambitions.

For example

timetable for NSD

There are indeed some positive aspects to this, for example the investment in carers.

Greater support for carers: £400 million has been provided between 2011 and 2015 so that carers can take breaks and the Government has introduced significant legislative changes to better support carers, who for the first time will have the right to an assessment of their eligible need.

But even here the issues with the Dementia Action Alliance Carers Call to Action are not discussed. Nor is ‘life story’ discussed properly. The lack of evidence base for ‘Dementia Vision’, I feel, is the most haunting aspect of the work which will come back to haunt their authors. Particularly worrying is the extent to which the document will bind future Governments. The general parliamentary principle is no parliament can bind its successor, but with the catastrophic cuts in funding in social care does a new Government, if different from the Conservative Party and the Alzheimer’s Society, wish to fund a package for induction of top FTSE companies into ‘dementia friendly communities’. The whole dementia friendly communities is not without a significant body of critics worldwide, who have called it divisive and patronising, but this is another shoo-horn for domination from the Alzheimer’s Society. taxpayer

 

But then again this would be mitigated against if this programme could be organised by more than one stakeholder, for example the Joseph Rowntree Foundation.  As I remarked earlier this week, the “Dementia Vision” document reflects the ‘squeezed middle‘, between prevention of dementia at one end, care homes at another end, and aimless direction for those individuals attempting to live well with dementia who are in the meantime stuck in the middle. Sure, it is all very well to be ‘dementia friendly’, and I recognise the document’s recognition of international law in human rights, but there is no convincing discussion of equality and human rights. In the overall scheme of things, there are some reasons to be cheerful, as Ian Dury and Sube Banerjee put it, for example the EU ALCOVE recommendations for dementia policy.

Consequently, taken as a whole, the entire ‘Dementia Vision’ has turned sadly into a despotic dystopic farce. Dementia UK must, however, be congratulated though for being mentioned in a number of footnotes.

 

 

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  • Stephen Milton

    Hi Shibley

    One cannot help but notice that the title of the book the ladies on the cover page are reading has been airbrushed out, but is still faintly visible. It is:

    “Prime Ministers Challenge on Dementia 2020”

    I will be surfacing again very soon – as you know I have taken a break from social media (in order to deal with an enormous workload – I simply don’t have the discipline to use it in moderation – it is too much of a distraction for me)

    Hope you are keeping well. The quality of this most recent post certainly suggests so.

    Kindest wishes

    Steve Milton FRSA Innovations in Dementia CIC PO Box 616 Exeter EX1 9JB Telephone: 01392 420076 Mobile: 07549 944795 Email: steve@innovationsindementia.org.uk Website: http://www.innovationsindementia.org.uk

  • Thanks Steve. take care best wishes shibley