#WorldAlzheimersDay – who is protecting whom?

Assessing risk is a critical part of English dementia policy at all levels. I again found myself talking about risk as I saw responses to World Alzheimer’s Day which was yesterday on September 22nd 2015.

I don’t especially like the term ‘wandering’ for people with dementia. This term, like ‘challenging behaviours’ has become seemingly legitimised through the hundreds of papers on it in the scientific press, and the grants no doubt equivalent to hundreds of thousands of dollars probably. I think the term, intentionally or not, attributes blame. And as I moot in the tweet below, this is potentially a problem, especially one considers that a dementia charity should not ideally be fundraising out of sheer fear.

Tweet 1

Don’t get me wrong. I think charities have an incredibly important part to play, and they do, in educating people about dementia; and generally ‘raising awareness’ howeverso defined. Take for example this helpful tweet from the Alzheimer’s Disease International containing a relevant infographic about the scale of the dementia epidemiology.


I had a hunch that something was very awry about yesterday when my colleague Simon Denegri tweeted something which caught my eye. Let me introduce you to Simon. He’s Chair, INVOLVE, NIHR National Director for Patients and the Public in Research, and, importantly, a nice guy.

The tweet, and the main subject of the research, is pretty self explanatory in fact.


The point Simon raises is worth thinking about, I feel. Is updating the epidemiology of dementia every year, nay every month, or even every week, an effective way of genuinely raising public awareness – or is it rather a lazy way to campaign on it? Obviously, playing devil’s advocate, one should argue that this main issue should be raised until something happens, but with a cure for dementia a long way distant it seems that this option is not likely.

So how about offering some solution instead? In other words, having scoped the problem, why not offer hope instead of fear through the huge volume of research in improving quality of life for people living with dementia and carers. Here’s the thing: there are 850,000 people living with dementia at the moment currently, and there’s got to be something in it for them with all this coverage.

I call fixating on the ‘tsunami’, ‘time bomb’ or ‘tidal wave’ “the shock doctrine” to make you want to dig into your deep pockets, to make you donate to a dementia charity. BUT  – with social care funding on its knees, having not been ringfenced since 2010 – is this actually a luxurious response to a rather serious immediate problem? Long before #DementiaWords ‘got sexy’, I presented my poster (PO124) on the hyperbolic language used in the G8dementia proceedings, in the Alzheimer Europe 2014 conference.

Here’s the rub.

Jeremy Hughes and the Alzheimer’s Society have been hugely successful with the ‘Dementia Friends’ campaign, which has seen a roll-out of information sessions on the basics of dementia for the whole country. Yesterday was a good opportunity to talk about that.

Dementia Friends

But meanwhile Alzheimer’s Research UK, which indeed does formidable work for the research infrastructure on dementias in the UK, rolled out this in a blogpost yesterday. The phraseology of the remark, “At Alzheimer’s Research UK, our hope is for a different kind of future, one where future generations will be free of this life-shattering condition”, is the opposite to one of the central messages of Dementia Friends, that ‘it is possible to live well with dementia’.


I don’t, of course, want to downplay the huge significance of the disclosure of the diagnosis of dementia as a life event for all those involved, not least the direct recipient of that diagnosis.

Sadly, we’ve been here before. All of these came to the fore when Richard Taylor PhD, one of the founding members of Dementia Alliance International, (DAI), pleaded, “Stop using stigma to raise money for us”, in the Alzheimer’s Disease Conference in 2014 in Puerto Rico. Actually, the DAI, a group run by people living with dementia, has been working with Alzheimer’s Disease International to make things much better, in no small part at all due to the gigantic efforts of its current Chair Kate Swaffer (@KateSwaffer).

All of this leads to me wonder who exactly is protecting whom? I wouldn’t go so far as to say that the public needs protecting from large dementia charities, but the sway they hold on policy is not inconsiderable; whether this is on the cure v care resource allocation in dementia, or whether there should be specialist nurses as well as dementia advisors (as I argued this year both in the ADI and Alzheimer Europe conferences).

There’s no doubt, as regards safeguarding issues, that people with dementia need to protected from risk where it is proportionate to do so. As I have long argued, you need to embrace risk to live well with dementia. But it is worth thinking about on whose part we are negotiating risk? Damian Murphy’s excellent blogpost yesterday emphasises how we cannot necessarily assume that carers and persons with dementia have the same (or even similar) viewpoints: this is directly relevant, say, on whether a person with dementia with a carer gets a GPS tracking device?  (I duly anticipate and expect Damian’s contribution here, by the way, to be seminal one, by the way.)

A long time ago when I was reading some of the management literature, I was really impressed by a paper to which Prof Michael Porter contributed on strategy and society (co-author Mark Kramer) in the Harvard Business Review.

Mark in a slide once summarised four crucial tenets of observing this re-articulated corporate social responsibility thus.


I, for one, would like to see all campaigning done by the dementia charities seen through this prism; and also bearing in mind the clinical, if not societal, question cui bono?



Should the workplace a better place to be if you live with early stages of dementia?

First of all, I should like to say at the outset that I don’t particularly like the term ‘early stages of dementia’. There are about a hundred different causes of dementia for a start, and they all progress in persons in an unique way at sometimes vastly different rates.

Helga Rohra, Chair of the European Working Group for Persons with Dementia, instead prefers to refer to the ‘faces’ of dementia. And this indeed is much more in keeping with a ‘person-oriented’ perspective.

Let us say, for the sake of argument, that whatever ‘dementia’ you’re talking about, there is an earlier period when you are developing symptoms of your own dementia and that you happen to be at work.

For the dementia of the Alzheimer type, you could have noticed problems in your learning and short term memory. You might’ve found yourself getting lost in travelling what should’ve been straightforward routes.

Or for posterior cortical atrophy, you happen to have noticed problems with your eyesight, seeing double, or things blurred; oe even falling – and forgetting the odd thing or to.

The reality is that the onset of a dementia can be quite subtle, and, if you’re in work, you may happen to think it’s unlikely your difficulties are due to a dementia. The problem with ringing up a ‘dementia hotline’ in a dementia charity is that you can get taken down a dementia ‘pathway’ of questioning; thus your symptoms are not given consideration for non-dementia causes.

The aim of the ‘dementia friendly communities’ policy worldwide, I feel, has been totally underestimated for its aspiration for people who’ve been given a diagnosis of dementia to ‘live better’.

Whilst I balk at the terms of ‘successful’ and ‘productive’ being used as labels in reference to an individual’s lifestyle, the idea that someone could live independently with appropriate support is entirely consistent with a philosophy of reablement and rehabilitation after diagnosis.

Kate Swaffer’s seminal work in prescribed disengagement (TM) all too clearly defines how things can be made to appear to be going downhill following a clinical diagnosis of dementia. Kate’s work is inspirational as it gives people hope, and gives a clear explanation of what happens. I don’t want to appear hyperbolic, but this work has the same potential to be of equal gravitas as that by great leaders who’ve changed the course of history.

Companies vary hugely in their resource allocations ability. I suspect we will see this as British businesses decide upon whether they wish to stay in Europe. Not oversimplifying the debate, but small and medium enterprises might have a somewhat different attitude to the ‘red tape’ of Europe to the free movement of capital and movement opportunities presented for large multinational corporates.

There is no reason to suggest that workplace policies will differ.

The World Health Organization has previously explained the background to the importance of its work on non-communicable diseases for the workplace.

“The European Network for Workplace Health Promotion has similarly issued a number of statements in support of workplace health promotion, including the Luxembourg Declaration on Workplace Health Promotion in the European Union, the Lisbon Statement on Workplace Health in Small and Medium Sized Enterprises and the Barcelona Declaration on Developing Good Workplace Health Practice in Europe.”

In response to the global burden imposed by noncommunicable diseases, WHO developed the Global Strategy on Diet, Physical Activity and Health (DPAS), which was adopted by the 57th World Health Assembly in May 2004. The goal of DPAS is to promote health by guiding the development of an enabling environment for sustainable actions at individual, community, national and global levels which, when taken together, will lead to reduced disease and death rates related to unhealthy diet and physical inactivity.”

As Kate Swaffer pointed out in a workshop for the Alzheimer’s Disease International conference in Western Australia in April 2015, people developing symptoms of dementia should be given the opportunity of whether they wish to stay in employment. If the person then does wish to do so, then there’s no reason to consider dementia as anything other than a disability (if indeed given a diagnosis of dementia); and this should bring with it legal rights against discrimination in theory. The same rights, in theory, are supposed to protect against unfair dismissal, although what happens in practice (especially in relation to when the diagnosis becomes ‘official’) is a complicated area.

The timing of this diagnosis is therefore all crucial. Irrespective of local difficulties in human rights legislation in England, the Universal Declaration of Human Rights applies all around the world to enforce universal inalienable rights. It’s a matter of semantics whether dementia is a disability as far as the United Nations Convention of Rights for People with Disabilities, particularly in relation to transposition to local law, is concerned – but many feels dementia does ‘fit'; and certainly does so in relation to the guidance on the Equality Act (2010).

So people living with disabilities, whether or not they are in the workplace, should be protected by human rights law. And we saw hint of this need for corporates to sign up to this from guidance for corporates on corporate social responsibility and human rights (from guidance issued in 2012).

Google is a multinational corporate, with huge clout.

That is why their lead is particularly noteworthy. They have recently announced the following:

“One billion people worldwide live with a physical or developmental disability. And for those in developing nations, many of these disabilities dictate a life of social and economic marginalization. But Google’s doing something about it. The company announced Tuesday that it is funding a $20 million grant for its latest Impact Challenge, one aimed at making the world more accessible for those with disabilities.”

“Specifically, the new Google Impact: Disabilities program seeks to “build awareness, identify solutions and help create universal access for people with disabilities.” To that end Google is soliciting people on both sides of the issue — people (or those whose family are) living with a disability as well as innovators, inventors and tinkerers. The Google’s has already teamed up with non-profit startups like Mission Arm, E-Nable and World Wide Hearing, and now it’s looking to fund more solutions to the tune of $20 million.”

The confluence of rights-based approaches, Big Money and dementia friendly communities is a highly significant one. It is vital that stakeholder groups such as the Dementia Alliance International, as the only international group run by people with dementia advocating for people with dementia, are amongst the first in line to make a pitch.


Chris Roberts’ plan to set up a dementia café: persons with dementia driving decision-making

There’s been a persistent concern amongst many academics and amongst many persons with dementia themselves that persons with dementia are not at the heart of decision-making in dementia-friendly communities.

The notion of ‘no dementia about me without me’ has not been rigorously applied to dementia-friendly communities, with directors of strategy in corporates seeking to consider how to make their organisations dementia-friendly as part of a corporate social responsibility or marketing strategy.

Such directors are obviously fluent in how to present such a strategy as elegant marketing, to secure competitive advantage, to make money, so it makes absolute sense for them.

It also makes sense for the Department of Health and the Alzheimer’s Society, who are seeing through the policy of ‘Dementia Friends’ through a sustainable financial arrangement, to see this policy plank politically flourish. With every single newspaper article on dementia now mentioning ‘Dementia Friends’, it is hard to see how this campaign cannot succeed.

Norman McNamara, an individual campaigning successfully and living with dementia of Lewy Body type, reported yesterday on Facebook local success around the Brixham community area.


Chris Roberts, another person in his 50s living with a dementia, also mooted the idea of setting up cafés himself.

“Since being diagnosed, i’ve noticed that there isn’t a lot for people in the mild to moderate stage. There are dementia cafes of course, but these seem to suit carers more than the people with dementia, we just sit there smiling when looked at while our carers and spouses chat away to each other, sharing there experiences and so on.”

“There are 100s of thousands of us in the same positition with nowhere to go or nowhere to be left! We could popin for an hour or for the day. We could practically run the place our selves, some where we could chat and share, watch tv, play cards, draw , we would arrange our own activities not led by someone who thinks they know what we want!”

“Yes we can live with dementia, yes we could even live well ! Yes we could live even better !”

The “living well with dementia” philosophy is all about enabling people to pursue what they can do rather what they cannot do. There’s a chapter on activities in my thesis on living well with dementia, reflecting the fact that activities are not only promoted in the current National Dementia Strategy but also in NICE Quality Standard 30 ‘Supporting people living with dementia’.

The National Dementia Strategy makes reference to such activities being ‘purposeful‘:


And this gets away from the concept of persons with dementia sitting around calmly doing knitting when they might have been, for example, proficient motorcycle bikers:


When one criticises that persons with dementia are often not at the heart of decision-making, these days I get a standard reply saying, ‘we always take serious note of the opinions of people with dementia; in fact there are two representatives on our board.’

Yet personal feedback which I receive is that persons with dementia resent this “tokenism”.

Having persons with dementia at the heart of decision-making I feel is important in the campaign to overcome stigma and discrimination against persons living with dementia. Persons with dementia running businesses of their own dispels the notion that persons with dementia are incapable of doing anything at all.

As a Fellow of the RSA, I intend to apply for a RSA Catalyst grant, as well as to the Wellcome Trust (who funded my own Ph.D. in decision-making in dementia fewer than 15 years ago now), to investigate collective decision by people in earlier stages of living with dementia to see how they in fact shape their community.

I am hoping that this will be in the context of their ongoing research work with the RSA Social Brain project, and I am hoping to hear from other Fellows about their work there, shortly. I will be putting my grant in with various people who are genuinely interested in this project.

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


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.