Day: December 14, 2013

Does it matter the public was completely misled about the real motives of the G8 dementia summit?

Shibley Rahman 0 Comments

dementia brain

You can argue that the general public were not in fact misled over anything.

The Department of Health had a live stream for the entire day, and the communique and declaration were made available at the end of the day.

It can be argued that the scale of the issue of prevalence of cases of dementia is significant. The media, however, did such a fantastic job in using words such as ‘time bomb’ in scaring the public across all media outlets that Prof Alistair Burns was put in a difficult position as to why dementia policy had appeared to ‘fail’. Burns explained with immaculate civility that the prevalence of dementia had appeared to be falling in recent years to a quiet adversarial but polite Emily Maitlis.

The spectacle of the G8 dementia was though a deception of the highest order. The emotions you were undoubtedly supposed to feel were that it was your fault that you hadn’t realised that dementia was a significant public policy issue.

One lie led to another unfortunately. There are at least two hundred different types of dementia. Some are completely reversible. Some are easier to treat than others. Therefore it was completely meaningless to talk of a single cure for dementia by 2025. Some senior medic should have stopped these health ministers including Jeremy Hunt making a fool of themselves.

They did not even aspire to promote good care primarily; they did not pledge monies in this direction; they gave a firm commitment to disseminate examples of good care.

There is no doubt that much more can be done in basic research to do with how Alzheimer’s disease comes about, and to examine why after fifteen years there is no consistent narrative about their lack of the slowing of disease progression.

What is though to me still unfathomable is why it has not been reported what this ‘open data’ agenda is about. It is about the sharing of clinical “big data”, including DNA genomics, across jurisdictions for the development of personalised medicine.

Innovations for wellbeing might be profitable, but nothing compared to this new project of Big Pharma. And there isn’t a single thing about it in the media. How did the G8 choreograph with such synchrony such a united response all of a sudden? It’s because it’s known that big data and personalised medicine are “the next big thing” in profitability for Big Data. And crucially the other approaches have failed.

You cannot help but feel physically sick at the outcome of this unique opportunity. It’s not accidental there was hardly a discussion of the caring shortfalls in any jurisdiction. The worst thing about this deception is that the public don’t even know that they have been deceived. As long as they donate money voluntarily for ‘research’ and/or participate in ‘dementia friends’, and so long charities can deliver in return some people contributing to the ‘big data’ sample, everyone’s a winner.

The sheer terror helps.

Everyone’s a winner.

Except the person with dementia.

Dementia friendly communities: corporates not behaving badly, or clever marketing?

Shibley Rahman 2 Comments

communities

There is of course an element of both. “Dementia friendly communities” could be an example of corporates not behaving badly, to create a competitive advantage for themselves; or it could be quite nifty marketing.

Corporates not behaving badly, officially known as “corporate social responsibility” is a form of corporate self-regulation integrated into a business model. CSR policy functions as a built-in, self-regulating mechanism whereby a business monitors and ensures its active compliance with the spirit of the law, ethical standards, and international norms.  It’s in keeping with the idea of corporates like citizens just like the rest of us, like trade unions, for example, all co-existing “in the public good“.  CSR is a process with the aim to embrace responsibility for the company’s actions and encourage a positive impact through its activities on the environment, consumers, employees, communities, stakeholders and all other members of the public sphere who may also be considered as stakeholders. Given the talk of “pandemic” and “time bomb”, it’s not a huge surprise corporates will wish to be in on the action. Some were out in force last week at the #G8summit. So that’s the answer to the question posed by Vivienne Parry in the session with NIKE and BT: “What are they doing here”?

Companies the world over, whether they are involved in consumer sales, B2B, intermediaries, charities or NGOs, all recognise the importance of marketing. Marketing tends to be something which many people feel they can have a dabble at, but of course charities have highly skilled people doing it just like any other corporate. ‘Strategic marketing‘ has been defined by David Aaker as a process that can allow an organisation to concentrate its resources on the optimal opportunities with the goals of increasing sales and achieving a sustainable competitive advantage. Or surplus, if you’re in the third sector. Talk to any smaller charity going out of action, like Dementia Advocacy Network, and you’ll see cut-throat it can be.

The highly visible “dementia friendly communities” programme of the Alzheimer’s Society focuses on improving the inclusion and quality of life of people with dementia, as described here.  The Alzheimer’s Society’s five year strategy includes a key ambition to work with people affected by dementia and key partners to define and develop dementia friendly communities.  In these communities: people will be aware of and understand more about dementia; people with dementia and their carers will be encouraged to seek help and support; and people with dementia will feel included in their community, be more independent and have more choice and control over their lives. And it’s also great publicity for corporates which sign up. The Prime Minister’s challenge on dementia also includes an ambition to create communities that are working to help people live well with dementia, and which politician doesn’t seek to be re-elected?

However, the concept is actually not at all new.

The “York Dementia Without Walls project” from the Joseph  Rowntree Foundation looked into what’s needed to make York a good place to live for people with dementia and their carers. It’s argued fundamentally that dementia-friendly communities can better support people in the early stages of their illness, maintaining confidence and boosting their ability to manage everyday life. Working with people with dementia, the research team investigated how local resources can be harnessed to this end, provided there is enough awareness. It was great work.

They were not alone. The RSA also developed their “connected communities” project. Connected Communities is a research programme that explores ‘social network’ approaches to social and economic challenges and opportunities. They concentrated on understanding, mapping and mobilising ‘real world’ face to face networks of support and exchange between citizens, small informal groups, public sector and third sector agencies, and private sector businesses.

This RSA group perceived the answer was to be found in “networks” because networks have dynamic qualities through which behaviour, emotional states, conditions, and influence spread and cluster, often in quite specific ways.

The UK indeed is not alone.  There’s been a growing number of cities and communities worldwide are striving to better meet the needs of their older residents.

The WHO Global Network of Age-friendly Cities and Communities was established to foster the exchange of experience and mutual learning between cities and communities worldwide. Any city or community that is committed to creating inclusive and accessible urban environments to benefit their ageing populations is welcome to join.

And these initiatives have had great success, which is to be applauded. In October 2013, it was announced that a landmark guide for banks and insurers to help improve the everyday lives of people affected by dementia was being launched by Lloyds Banking Group and Alzheimer’s Society. The ‘Dementia-friendly financial services charter‘ was designed to help financial services organisations recognise, understand and respond to the needs of customers living with dementia and their carers. Financial abuse can be a massive source of worry for carers of people living with dementia, so it was wonderful Lloyds Bank participated in this innovation.

So why should corporates prefer to go with the Alzheimer’s Society? It is quite possible that this is due to the strength of the brand of that society.

A parallel can be seen in property law.

A landlord would obviously prefer to know that his tenant is solvent and reputable and consequently more likely to perform all leasehold covenants.

Property professionals often refer to covenant strength and try to determine whether a proposed tenant is a “good covenant”. For investors the covenant strength of the tenant is an extremely important factor. If a landlord has tenants with good covenant strength, the property will be more attractive to potential buyers and its value will be likely to go up.

The parallel is the power of the brand of a charity – its “pulling power”.

Businesses and charities put a lot of time into their outward reputation, in the hope of attracting more inward business. Whilst Google hits are not per se a sign of popularity and goodwill, because for example a Google ranking might depend on the number and quality of pages which link to that webpage, the ranking of a phrase can be a good indication of the power of a brand.

Here it is quite interesting that the Alzheimer’s Society puts up a good showing for a search of ‘dementia friendly communities’. A possible reason for the society’s success here is to find in the last entry of this extract: the powerful strategic alliance it has with the Department of Health, who will clearly want this project to succeed.

Google search

Despite various third sector and corporate entities competing with each other, there has been remarkably little scientific peer-reviewed published evidence on “dementia friendly communities”. Here for example is the output from the ‘Medline’ database encompassing a huge collection of medical journals. This search only returned two pieces, where the abstract was not even available. Many, therefore, will have agreed with Sir Mark Walport, the Chief Scientific Officer, to query publicly at #G8dementia what the precise evidence base for the “dementia friendly community” is currently.

Medline search

Notably, the prestigious Stirling group (DSDC) aired their concerns here:

““Dementia-friendly” has become part of the language of strategic planning in the public and third sectors, since the launch of the Prime Minister’s Challenge on Dementia in England in 2012 included the creation of dementia-friendly communities as one of its three main objectives. However, its exact meaning is inconsistent.

Being “dementia-friendly” has also become an aspiration for specific organisations, for facilities and buildings and for services – sometimes as part of a wider commitment, sometimes stand-alone.

DSDC does not believe there is a single model of “dementia-friendly”, or any need for one.  But it does advocate for objective measures of what is being promoted as “dementia-friendly” to ensure it is not just a popular phrase used to cover shallow or cosmetic change. In terms of what we do ourselves, DSDC aims to help any group or community work out what can be achieved on a sustainable basis given available local resources.”

Piercy and Lane (2009) from the Warwick Business School really elegantly reviewed the relationship between corporate social responsibility and strategic marketing in their article, “Corporate social responsibility: impacts on strategic marketing and customer value” [The Marketing Review, 2009, Vol. 9, No. 4, pp. 335-360].

The initiative of Lloyds embracing “dementia friendly communities” can be at once understood through Piercy and Lane’s discussion of the notion of “ethical consumerism“”

“Commentators on branding suggest that ethical consumption is one of the most significant issues in modern markets. The conclusion is that ethical and environmental questions are being posed by growing numbers of consumers, but they are not always overly impressed by companies’ responses. It is also unclear how robust ethical consumerism will be in the face of other pressures – sales of organic foods fell nearly 20% in the UK in 2008, as consumers reverted to cheaper alternatives when economic conditions worsened. Nonetheless, the impact of “ethical consumerism” is large and of escalating significance.”

A particular banks, despite being in a relatively crowded market (and hence oligopolistic), particularly need to demonstrate why it’s better than the rest, and ethical consumerism has been particularly important for this in recent times, possibly in a way accelerated by the global financial crashes.

Also such initiatives are particularly attractive to investors, viz:

“There are growing signs that many corporate boards of directors are under shareholder pressure to adopt more acceptable environmental policies and keep a closer watch on environmental issues, reflecting investor concerns about global warming and shortages of natural resources. The attitude of investors toward CSR initiatives may be positive or negative. For example, it may be from an investor perspective the case for sustainability is essentially a business case – initiatives are not about “saving the planet”, but about cutting waste, reducing costs and becoming more efficient. In 2006, Google launched a strategy to switch to renewable energy – while this reflects the personal beliefs of the founders of the business, it is also true that Google is a massive user of electricity and renewable energy provides a way to cut costs. Nonetheless, when Google announced its renewable energy strategy, one leading New York stock analyst downgraded the company, despite clear indications that the initiative would cut costs – his view was that the company was no longer focusing on its real priorities.”

This criticism clearly would not apply to dementia charities, where inclusion of disabled members of society would be invariably an aim of any reasonable dementia charity. But the point holds: that the ‘market’ is sensitive to a company’s ethical credentials these days. For example, a dementia charity which solely concentrated on genomic ‘big data’ might not have as much competitive advantage with the general public. And the ‘dementia friendly community’ is an effective way of returning value to members of the general public, in the absence currently of disease-modifying drugs or cures for Alzheimer’s disease and the other two hundred causes (at least) of a dementia.

It is not of course accidental that Andrea Ponti from JP Morgan was there at #G8dementia. Corporates behaving well is big business. It would be easy to dismiss what they can bring to the table, that is somehow raise the profile of dementia. The tragedy of course would be if diversion of resources acted to the detriment of actual patient-centred care so desperately needed at the moment.

The G8 dementia Summit: the comparison with the botched NHS reforms is striking

Shibley Rahman 0 Comments

frail hands

This week,  to great fanfare, the G8 hosted its summit on dementia. Indeed, that the G8 were discussing a single condition was indeed remarkable. That they were joining forces to consider working together on this inspired hope.

What was unforgiveable was the sheer volume of myths about dementia which were pedalled though by the media. Prof Alistair Burns to his credit gave an answer in an interview by Emily Maitlis explaining how dementia prevalence rates appeared to be falling, in response to the backdrop set up by media memes such as ‘timebomb’. Many were left extremely angry on account of the lack of balance, completely distorting the picture such that any idea of someone ‘living well with dementia’ became a rarity.

What was not expected was a sanitisation of advanced dementia, but even there there was not a discussion of end of life care. In fact, there generally was no discussion of a minimum safe level of health and social care in any of the countries. The media pushed hard ‘a cure for dementia by 2025′, which major Alzheimer’s societies had signed up to. The claim is complete and utter rubbish, as there are over a hundred different types of dementia; the public were unashamedly being sold a pup.

The English health system, the National Health Service, has an obsession with ‘efficiency’. So much so it will happily fork out to pay one for one junior doctor covering all the general medical hospital every night for a week, and that junior doctor doesn’t stop all night. Sometimes that junior doctor will be expected to cover the wards too. Cover by nurses can be equally ‘lean’ during the weekends too.

The obsession with measuring ‘I want good care’ and regulation is akin to a teacher who has forgotten to teach but can set regular assessments. When the system is set up to run everything with much less doing a lot more, it’s possible something has got to give. And this is of course precisely what happened at Mid Staffs.

And yet out of the blue there appeared a 493 page document ultimately called the Health and Social Care Act (2012) which had nothing to do with this most important point about patient safety. There is not even a single clause to do with patient safety (unless  you include the clause abolishing the National Patient Safety Agency). The medical Royal Colleges were not involved. The BMA was not involved. And yet the Act of parliament, outsourcing and privatising the NHS, is just what the Corporate ordered.

This is what is known in the (business) trade as an ‘opportunity cost’ where money and efforts could have been better spent elsewhere. In this particular case, despite a promise of ‘no top reorganisation’, there was a £3bn reorganisation.

When attending a medical ward, you have to go to the sick patient first. You have to prioritise. If there had to be an unannounced reform of the NHS, outsourcing it was not the priority. The latest survey even shows that the public don’t especially like private providers doing NHS work.

Likewise, the priority for dementia care should have been investment in the social capital of caring. Too often carers are embattled with the biological, financial and legal considerations of caring. Many carers are themselves on zero-hours contracts. The G8 dementia summit was a great opportunity to confront that.

It didn’t. Instead, with alarming synchrony, the G8 leaders came together to sing off the corporate script. Vivienne Parry with effortless ease choreographed a seemingly spontaneous discussion about well rehearsed arguments for the need for ‘big data’, global data sharing, genomics, and personalised medicine, for much of the day. Prevention was of course discussed, but this is of course intimately wound up with the collection of information about the person, and the use of that other pet subject, biomarkers.

And more research is not better research, in the same way bigger information is not better information. If research monies are diverted into data analysis, genomics and personalised medicine, these monies will be diverted away from research into caring for example. One wonders whither the ‘cure for dementia’ will actually go, unless they have another fifteen years to look at slowing the progression of Alzheimer’s disease. The evidence that cholinesterase inhibitors, a class of drugs used to treat symptomatically memory and attention problems in Alzheimer’s disease, has a beneficial effect on slowing disease progression is as low as it possibly can be after nearly 20 years of expensive research in this area.

The G8 summit, like the Health and Social Care Act, was ‘corporate capture’ at its best, so if you’re angry, well done, that is the appropriate emotional reaction!  If you were wondering if you’d accidentally missed the discussion of carers and how they would be involved until 2025, don’t worry, you hadn’t. They weren’t there.