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The wolf in sheep’s clothing of ‘dementia friendly communities’

I was asked the other day to give feedback for work stream 7 of the EU Joint Action against Dementia – this is on ‘dementia friendly communities’.

Don’t get me wrong. There are some really interesting initiatives done in the name of ‘dementia friendliness’, and where I think it works is where there’s a strong sense of community buy-in, such as for dementia friendly clergy.

I also think dementia friendly pubs are great. After all, some regulars in pubs have been going to their local for years, and other drinkers might be introduced to dementia for the first time that way. Dementia friendly swimming is also fun.

But this is where the slippery slope begins. Around the beginning of the Coalition Government 2010 with David Cameron as Prime Minister, the idea of the Big Society was floated.

While the precise articulation of the Big Society remained poor, apart from being vigorously proponent by a new model army of advocates such as Lord Nat Wei, there was rumbling beneath the substratum the idea of communitarianism and the work of Philip Blond at the think tank Respublica.

Within this formulation, the idea was replacing bonds or social contracts between a monopolistic state (such as in health and social care services) would be much stronger bonds between citizens themselves as they could produce calls to action in campaigning for change.

What we have ended up with from the Prime Minister Dementia Challenge is a complete disregard for social care. This is even witnessed in the current reincarnation of policy in England, not even a strategy but a piecemeal ‘implementation plan’, built around the Dementia Intelligence Network which misses out ‘caring well’ altogether.

There’s also the aspect that ‘dementia friendliness’ is used by some blatantly as marketing advantage whether they’re actually inclusive of all consumers or not – whether this be supermarkets, banks, or other high street leading brands. Again, this is totally ideologically driven, being part of the ‘behavioural insights’ or ‘nudge’ approach of the Cameron government.

I feel we have a far from plural third sector in dementia, following the strong public-private arrangement between the Government and the Alzheimer’s Society, which has meant that in some areas the Alzheimer’s Society behave almost monopolistically.

This is seen in the ‘accreditation’ of dementia friendly communities. One can immediately agree with the need for some consensus about what a dementia friendly community might be but one can legitimately argue whether dementia friendly communities should in effect be turned into brand ambassadors for the Alzheimer’s Society.

And it could be unfortunate timing – like with the Big Society. But sweeping cuts (including savage social care cuts) effectively a political and ideological austerity, the Big Society, and ‘dementia friendliness’ are a toxic mix.

Despite some initial attempts at keeping ‘Dementia Friends’ at arm’s length with the Alzheimer’s Society, it is quite unclear why their numbers seemed to accelerate around the deadline for them needing to reach their million. Cynics argue it’s got something to do with the online mechanism of becoming a Dementia Friend, or suddenly opening up membership to Scotland. There’s never been a report on the qualitative success of Dementia Friends in reversing stigma or prejudices in dementia, and yet the idea for this programme can be easily seen in the only English dementia strategy to date – 2009 “Living well with dementia”.

And again, despite the Alzheimer’s Society categorically saying otherwise, many Dementia Friend Champions have become unwittingly become brand representatives for the Alzheimer’s Society.

I frankly think this is disgusting. Anyone who is not involved with the Alzheimer’s Society, or the Dementia Action Alliance organised closely with the Alzheimer’s Society, can find themselves very easily disenfranchised, whether this is on local advocacy services, respite care or clinical specialist nurses.

I was even told at the weekend that another Doctor had no money to pay for staff training on dementia, at a substantially much higher level than ‘Dementia Friends’, because all the money had been spent on renovating their wards with a lick of paint in the name of “dementia friendliness” and the low hanging fruit of ‘innovative leadership’.

In many areas of the country, despite great initiatives, dementia friendly communities have been the vehicle for a relentless power grab by the Alzheimer’s Society, albeit I am sure that this was not intended at all by the Alzheimer’s Society, the national clinical lead, or Jeremy Hunt.

And this has been legitimised by a superficial tokenistic air of “engagement”. Almost daily appearances by broadly the same advocates have not particularly advanced policy – for example delayed discharges are at sky high, and the state of domiciliary care is at a parlour state. There are some fantastic campaigners, however, and I don’t wish to clump them in this genuine criticism – I do believe strongly in including all voices in the room, including senior social workers and medics too – in the genuine spirit of co-production.

The term ‘dementia friendly community’ is a farce. Nobody knows how big a ‘community’ is, the word ‘friendly’ has more than a whiff of ‘does he take sugar?’ promoting a sense of homogeneous underclass, and ‘dementia’ embraces about two hundred different conditions where living with comorbidity and complexity is the norm and not the exception.

It is absolutely impossible to object against communities which are inclusive and accessible to all – it is in fact a legal right.

Now is the time for a genuine conversation led by people with dementia on human rights and the UN Convention on Rights of Persons with Disabilities – I feel this is  now not only essential but also urgent.

I hope like our foreign policy on Libya, or on the economic policies which have produced astronomic national debt, or the policy which has produced universal underfunding of NHS Trusts, or the diabolical policy on grammar schools, dementia friendly communities can have a re-think, along with a comprehensive review of the health of the charity sector in dementia. Monopolistic behaviour is not good for consumer choice in any sector.

 

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