The desperate need for ‘dementia friendly communities’ in England to up their game

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As such, whilst “dementia friendly communities” have a clear brand identity and value to the Alzheimer’s Society and Alzheimer’s Disease International, it is concerning that there have only been thirteen papers ever in the peer reviewed literature specifically looking at the term including one review from 2016.

The problem with its adoption as a marketing brand is that it has largely escaped constructive criticism, particularly from commissioners who are not particularly familiar with people with dementia, carers, or the literature.

Whilst it is true that not all perspective on living a life with dementia or being a carer should necessarily viewed through a prism of the health and social care systems, it is intuitive the these should not be airbrushed out of the discussion, even if that would not particularly perturb Big Society, its brand ambassadors or powerful grant lobbyists. The NHS and social care systems are not getting adequate funding matched to demand, even if one views that ultimately the ‘better bang for your buck’ would be served by new models of care heading towards a US style of accountable care organisations.

The newly published Draft Action Plan on Dementia by the World Health Organisation, published just shy of Christmas 2016, is an important contribution, which takes us a lot further. My beef with the document is that it doesn’t really add up. The “prevention” arguments need to be done with extreme caution. There is a ‘history’ of prevention in medicine as being seen as the more profitable end of healthcare provision. See for example the famous lobbying of Nixon for the 1973 HMO Act. And the arguments for successful prevention can be overstated. If for example you believe that a high level of education can protective against dementia, this in itself does not explain why Oxford graduates Margaret Thatcher and Harold Wilson went on to develop dementia. There is, however, probably something in the prevention drive, in that the MRC CFAS study of epidemiology of Cambridge strongly points to successful targeting of vascular risk factors being able to reduce the incidence of dementia.

The WHO Draft Action Plan is further problematic for England as it takes about universal coverage for NHS and social care (the latter is clearly not the cause being means tested and now being subject to considerable local authority rationing). Furthermore, if it involves a rôle for private insurance system, you can immediately see the problem of insurance packages for dementia, even if you have the most basic knowledge of insurance law. That is, an insurer will want to make voidable any insurance contracts where the person being insured has not been complete or fraudulent in specifying risky behaviours for dementia when he or she took out the insurance package. Insurance companies are of course scrupulous about paying out, as we know from the US jurisdiction. And you also can’t directly sue the insurer.

That aside, it is clear that ‘dementia friendly communities’ needs a revamp. As acknowledged, there are many different forms of dementia with different manifestations according to how brain function has been affected. The actual diagnosis is a moot point often, with many diagnoses being ultimately being called ‘mixed’. The term ‘friendly’ is a nonsense, in that one would be hard pushed to advocate a campaign called ‘dementia nasty communities’. And we don’t know how big a community is, although we do know from the initial guidance of the Big Society which falls into the timeline of dementia friendly communities in the England that communities are large enough to drive local community action, decreasing the need for expensive State-driven intervention. What we have seen in England of course is relative draconian cuts in the NHS and social care, while the brand of the Alzheimer’s Society and its chief proponents have gone from strength to strength.

The original definition of the ‘dementia friendly community’ in England by the Alzheimer’s Society completely failed to address two extremely important issues. Firstly, the independent living argument was made with barely any reference to the impact of disability on loss of independence, and yet this was precisely the argument from the WHO Aged Cities work which predated the English dementia friendly communities. The effect of this was to ignore completely dementia as a disability clearly stated in the regulations to the Equality Act (2010), and strongly alluded to in the preamble of the United Nations Convention of Rights for Persons with Disabilities. Secondly, the human rights argument, with at its heart protection of individual against excesses of their of the State (e.g. lack of dignity in dementia care, excess surveillance in care homes, mitigation against physical restraint), was utterly lost in the English version, though the Scottish version did well to enmesh the PANEL human-rights based approaches in its policy.

The emphasis in the Alzheimer’s Society version is clearly one which benefits the economy, in keeping with the Big Society. Not everyone with dementia wishes to see themselves as ‘economically productive’. Besides, if you took out the hard work done by unpaid carers, the economy would implode under the weight of unmet needs. Carers are absolutely pivotal in getting the diagnosis and management of people with dementia right, as well as improving their wellbeing. On a practical basis, the carer has an invisible hand on the timing of when crises happen, or when a person with dementia may have his or her needs better catered for by a residential care settings.

You don’t see much of carers, say compared to high street banks, in the Alzheimer’s Society ‘dementia friendly community’. High Street Banks can easily all very well market themselves as ‘dementia friendly’, creating competitive advantage through a ‘nudge’. But that’s all it is – marketing, if the customer experience does not actually improve. We do not know how many outcomes have realistically been produced. For example, for all the millions of pounds which have been pumped into ‘Dementia Friends’, why is it that newspaper headlines are incessantly using the terms ‘dementia victims’ or ‘dementia sufferers”? It is as if there is absolutely little accountability on the ‘return of investment’ of this initiative, to a large extent funded by the taxpayer with money leaching into marketing agencies thereafter.

It is therefore a substantial improvement that cross-cutting themes in the new WHO Draft Action on Dementia include improving the human rights of persons with dementia, empowerment and engagement of people with dementia and their carers. The NHS England Transformation Network has the appearance with an emperor with no clothes on as it has no ‘caring well’, in addition to the other ‘wells’ – see below, reproduced under the open government license.

dementia-well-pathway

The relentless airbrushing of ‘caring well’ might suit people who wish to pretend that social care does not exist, or that clinical specialist nurses (Admiral nurses) do not exist either, or that respite care and domiciliary care are an utter irrelevance – but sadly this rests uneasily with the rest of the world’s policy on dementia.

WHO therefore arrive at a much more balanced view of ‘dementia friendliness’, para. 31:

31. A dementia-friendly society possesses an inclusive and accessible community environment that optimizes opportunities for health, participation and security for all people, in order to ensure quality of life and dignity for people with dementia, their carers and families. Shared key aspects of dementia-friendly initiatives include safeguarding the human rights of people with dementia, tackling the stigmatization associated with dementia, promoting a greater involvement of people with dementia in society, and supporting families and carers of people with dementia. The concept of dementia-friendliness is tightly linked to societies also being age-friendly. Both age- and dementia-friendly initiatives should take into account the fact that a significant number of older people are living alone and are sometimes very isolated.”

And I feel this is one which clearly reflects a rights-based consciousness, investing in concepts such as autonomy and dignity, the themes of the Alzheimer’s Europe conference in Glasgow in 2014. This definition gets away from the “does he take sugar?” approach to dementia, and affords people with dementia and carers with hugely more respect. Now that the World Health Organisation have given a lead, there is now a definite need for England to up its game.

@dr_shibley

 

Note. Dr Shibley Rahman’s book on integrated care pathways in dementia is about to be published by Jessica Kingsley Publishers on January 19th 2017. It is called “Enhancing health and wellbeing in dementia: a person-centred integrated care approach”.

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