Policy

Fake involvement is not enough. Genuine participation matters.

Shibley Rahman 0 Comments

Lottery

There has been a disturbing tendency for the word ‘social movements’ to become bastardised for marketing a theme or even business product. I sympathise with people needing to pay their mortgages, but this approach has been to the detriment of real participation of those people whom Prof Edgar Cahn referred to as ‘no more throw away people’. Slick marketing, like pornography for the US Supreme Court, can indeed be spotted a mile off – you recognise it when you see it.

The word ‘co-production’ faces a similar setback. However, it is actually quite hard to escape what co-production really means, as defined below as an example.

“Co-production means delivering public services in an equal and reciprocal relationship between professionals, people using services, their families and their neighbours. Where activities are co-produced in this way, both services and neighbourhoods become far more effective agents of change.”
(Boyle et al., 2010).

Fake ‘involvement’ of patient groups I think does quite a lot of damage. This at one level is the notorious ‘zero sum gain’ – in that resources consumed A deprives resources for B. As an example, it would be dead easy for Big Charity to donate money to the Dementia Alliance International, a group run by and run for people living with dementia. But the fact this does not readily happen is an epiphenomenon entirely of the need of Big Charity to retain control as to who writes the script. Or put another way, who is in the room.

But secondly an illusion of control is deeply fraudulent in itself. The “illusion of control”, defined as various forms, is the tendency for people to overestimate their ability to control events; for example, it occurs when someone feels a sense of control over outcomes that they demonstrably do not influence.

There are some well known examples of this.

You in an orchard, and you choose an apple which tastes delicious. You assume you are very skilled at choosing apples (when in fact the whole batch happens to be good today).

Another good example is that you enter the National Lottery and in fact you win millions. You assume that this is (partly) a result of how good your lucky numbers are. However, lotteries are totally random so you can’t influence them with the numbers you choose. Although most of us acknowledge this as a statement of fact rather than an opinion, we still harbour an inkling that maybe it does matter which numbers we choose).

Available evidence suggests that an important factor in development of this illusion is the personal involvement of participants who are trying to obtain the outcome (reviewed by Yarritu, Matute and Vadillo, 2014).

It is possible that pseudo involvement or pseudo engagement through regional working groups might be doing more damage than active democracy. I think a tell-tale sign of this is when in a double act of a person with dementia and a person without dementia the person without dementia does nearly 50% (or more) of the talking.

Another good example is where in ‘involving a person with dementia’, there is a “working group” chaired by, and the agenda set by, a person without a dementia. That person without dementia is in full control of the narrative.

This illusion of control has been discussed extensively elsewhere.

“Such involvement is frequently held up as empowering audiences and enhancing democracy. Indeed, the possibility of audiences creating their own content has led to the idea of reconceptualising traditional consumers as, in Jay Rosen’s now famous definition, ‘the people formerly known as the audience’. But what is being offered is a ‘simulacrum’ of engagement. The user is given the illusion of control – while all the time the underlying power relationships remain unchallenged. It has become commonplace to argue that policy-makers should act to ‘increase citizens’ participation in the commissioning and production of news in order to ensure that “the public interest” is no longer defined in private’ (for example Co-ordinating Committee for Media Reform 2012). How this might be achieved is less than clear and the belief that it will increase plurality may be ill-founded’.

(Scullion et al., 2013)

The traditional approach to the  work on the “illusion of control” has been framed in motivational terms (e.g., Langer, 1975).

From this perspective, people’s judgments of control are influenced by subjective needs related with the maintenance and enhancement of the self-esteem (e.g., Heider, 1958). And as such it might be better to call involvement initiatives for what they also achieve – peer-support as well as boosting people’s self confidence in talking at public events.

It has been shown that the sense of having control has benefits for well-being (e.g., Bandura, 1989; Lefcourt, 1973).

As Bandura (1989) writes:

“They are full of impediments, failures, adversities, setbacks, frustrations, and inequities. People must have a robust sense of personal efficacy to sustain the perseverant effort needed to succeed. Self-doubts can set in quickly after some failures or reverses. The important matter is not that difficulties arouse self-doubt, which is a natural im- mediate reaction, but the speed of recovery of perceived self-efficacy from difficulties.”

This reflects a personal adage of mine – it’s not how you fall, it’s how you get up. And also makes complete sense – in that the invitation to go to events or conferences acts as a counterpoint to being given a diagnosis of dementia which has potentially a profound impact on identity.

But Kate Swaffer’s construct of ‘prescribed disengagement’ is significantly more relevant here, I feel.

Undeniably, one must set one’s sights way above “involvement”.

Promoted by the Scottish jurisdiction notably, a human “rights based approach” is about empowering people to know and claim their rights and increasing the ability and accountability of individuals and institutions who are responsible for respecting, protecting and fulfilling rights.

There are some underlying principles which are of fundamental importance in applying a human rights based approach in practice. These are the so-called PANEL principles.

participation
accountability
non-discrimination and equality
empowerment and
legality.

And these remain relevant too to the actual way care and support are approached.

As the Scottish Human Rights website explains,

“Everyone has the right to participate in decisions which affect their human rights. Participation must be active, free, meaningful and give attention to issues of accessibility, including access to information in a form and a language which can be understood.

In relation to the care of older people this means that individuals should participate in all decisions about the care and support they are receiving. This could range from participation in the commissioning and procurement of social care services by local authorities to participating in daily decisions about the care and support being received.”

Latterly, there has been such enormous arrogance that consistently people with dementia, if invited to conferences about dementia at all, are invited at the last minute giving all the semblance of an ‘after thought’ for marketing purposes.

One wonders why the named speakers in the programme are so reluctant to keep up a fuss, even those who have an involvement string to their bow.

Exclusion is no laughing matter parodies excepted.

Take for example a woman of the year who is in fact a man (though please note that this is a joke).

CcN4GSBXEAAAGf1.jpg-large

But this sadly is not a joke. One year ago, Saudi Arabia hosted an all-male ‘women’s rights’ conference as reported here.

The article notes that:

“Saudi Arabia’s laughably prestigious University of Qassim played host to one of the biggest women’s rights conferences in the Arab world in 2012. Ironically, the institution managed to hold the event without the advice or attendance of a single woman.”

In the market which has developed in health and social care, it has been convenient to formalise the ‘invisible hand’ of Adam Smith into a broker. But questions about whether there is such a thing as a free broker, or whether fake involvement is seriously damaging to your genuine participation, must surely be asked.
References

Bandura A. (1989). Human agency in social cognitive theory. American Psychologist, 44(9), 1175–1184. doi: 10.1037/0003-066X.44.9.1175.

Boyle, D, Coote, A, Sherwood, C, Slay, J. (2009) Right here, right now: Taking co-production into the mainstream. NEF/NESTA/The Lab.

Heider F. (1958). The psychology of interpersonal relation. New York, NY: Wiley.

Langer E. J. (1975). The illusion of control. Journal of Personality and Social Psychology, 32, 311–328. doi: 10.1037/0022-3514.32.2.311

Lefcourt H. M. (1973). The function of the illusions of control and freedom. American Psychologist, 28, 417–425. doi: 10.1037/h0034639.

Scullion, R, Gerodimos, R, Jackson, D, Lilleker, D. (2013) The Media, Political Participation and Empowerment. Routledge Publishers.

Yarritu I, Matute H, Vadillo MA. Illusion of control: the role of personal involvement. Exp Psychol. 2014 Jan 1;61(1):38-47. doi: 10.1027/1618-3169/a000225.

Kate Swaffer is admitted onto the World Dementia Council

Shibley Rahman 2 Comments

KS

 

Late on Wednesday it was announced that the decision has been taken to admit Kate Swaffer to the World Dementia Council.

Kate Swaffer is Chair of Dementia Alliance International (“DAI”), which is a leading non-profit group of people with dementia from all around the world that seek to represent, support, and educate others living with the disease. DAI is an organisation that will provide a unified voice of strength, advocacy and support in the fight for individual autonomy and improved quality of life.

 

Kate, from Adelaide in South Australia, was diagnosed with semantic dementia – a form of fronto-temporal dementia – in 2008 at the age of 49.

Since getting her diagnosis Kate has become a campaigner, speaker and accomplished writer on dementia issues. In January 2016, her book ‘What the hell happened to my brain?” was published, and has rapidly become a landmark contribution of a detailed account of a lived experience with dementia.

In this excerpt from her first book about dementia, What the hell happened to my brain, Kate Swaffer has written this:

Subsequent to my being diagnosed with younger onset dementia at the age of 49, health care professionals and service providers all told me the same thing: “to give up work, give up study and go home and live for the time I had left.” On the way, it was also suggested I put my end-of-life affairs in order – even though at no time was I told dementia is a terminal illness. I was also told to get acquainted with aged care, including selecting a respite day care and residential care facility, sooner rather than later, so I could become used to it. My husband was told he would soon have to give up work to become a full-time family carer.  

Very quickly I termed this Prescribed Disengagement™, and thankfully I eventually chose to ignore it. Because Prescribed Disengagement™’ is a term I came up with, I was advised to trademark it before someone else did, and hence have done so.

Kate last year was awarded a distinction in her Master of Science in dementia care from the University of Wollongong.

 

The statement from the Dementia Alliance International reads as follows.

“Dementia Alliance International (DAI) Chair Kate Swaffer from Australia has today officially become a member of the World Dementia Council, the second person with dementia to join this council. This is an important and significant appointment for DAI, and for people with dementia globally.  She joins another DAI member, who is also Vice Chair of the European Dementia Working Group, Hilary Doxford from the UK.”

Established by the last UK government, the World Dementia Council has the stated mission to champion dementia research and development and unlock investment around the world.

 

The membership of the Council is currently wide-ranging, but includes senior figures in dementia policy internationally.

On 16 October 2014, I wrote an open letter to DAI members which was indeed published on the official DAI blog, establishing my wish for the World Dementia Council to have members who are currently living with dementia. At the time, there were no such members, despite there being 47.5 million people estimated to be currently living with dementia in the world.

 

Kate’s admission to the World Dementia Council is a highly significant event.

DAI has been working towards full access for people with dementia to the United Nations Convention on the Rights of Persons with Disabilities (CRPD), which is a global tool for achieving social change, this second appointment is particularly significant. Article 19 of the Convention is the right to live independently and to be included in the community. Indeed, Prof Peter Mittler is due to be presenting on this, on behalf of DAI, at the Alzheimer’s International Conference in Hungary in April 2016.

Article 29 on “participation in public and political life” enshrines an obligation for State Parties “to persons with disabilities political rights and the opportunity to enjoy them on an equal basis with others, and shall undertake to ensure that persons with disabilities can effectively and fully participate in political and public life on an equal basis with others.”

 

The four major prongs of the World Dementia Council’s work currently are integrated development, “optimising the path of medicines from research through to market by reducing barriers & encouraging regulatory flexibility”; finance and incentives – “looking at ways to increase the relatively low investment in funding dementia innovation by exploring new types of funding product”; open science – “unleashing the potential of open science for sharing information and knowledge to accelerate progress in developing new treatments and care approaches”; and public health/prevention – “The Council is also beginning an evidence review into existing research on how risk factors such as diabetes and heart disease relate to dementia, as well as looking into public health messaging on lifestyle and prevention.”

Even with the development of new drugs to delay the progression of the dementias, the leading cause of which is Alzheimer’s disease in the world, the need for prevention of progression of diseases through both cognitive and non-cognitive therapies will be essential. Kate’s input as a person living with dementia and as an accomplished student of dementia herself will be unique.

 

 

 

Kate Swaffer is clearly a world class ambassador for living beyond dementia

Shibley Rahman 0 Comments

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Err… since this photo was taken in the Hotel Adina, opposite the conference centre hosting the Alzheimer’s Disease International (ADI) conference for 2014, I have lost a lot of weight (I wish.)

But actually literally seconds before this snap was taken, Kate had said ‘you goose!’ in utter surprise when I suggested to Kate she should turn her roaming charges off. We were, of course, both in Australia, and the country of habitual residence of Kate is also Australia.

I have many happy memories of that conference, though overall I tend to be antagonistic of conferences. Most of the plenary speakers tend to be overwhelmingly underwhelming.

There are of course some exceptional speakers. I always enjoy the updates on Prof Martin Prince on epidemiology of dementia, with a focus on low and middle income countries. I know this is a complicated area, as I am sure Prof Carol Brayne from my alma mater will demonstrate in Budapest for this year’s ADI conference.

Many of the pervasive issues internationally about living with dementia also relate very much to domestic jurisdictions: including research, drug therapies, timely diagnosis, care and support, enhancing health, and dying well.

Sometimes it can be all too easy to become an innocent pawn in massive corporate agendas, which sometimes tragically reveal themselves in slick ads from ‘big charity’, raising money, but pushing stigma of dementia to do so.

I first spoke with Kate over a rather greasy lamb moussaka. Beth was there. Beth and Kate took a mutual interest in what the restaurant had to offer.

I showed Kate the manuscript of my first book expecting her to be wholly uninterested in it: actually, the opposite was the case.

Kate’s background is not straightforward. A devoted mother and wife, haute cuisine chef (trained with the best people in this field), a distinction in dementia care from a world famous University, nurse specialist in operating theatres, volunteer in bereavement counselling, and, of course, keen international speaker on dementia.

I think Kate manages to update her blog every day, and has introduced an unique term called ‘living beyond dementia‘, which sums up a positive and flourishing approach – novel and original – setting aside the negative aspects of the impact of the medical profession in imparting a diagnosis.

Kate was the first person in the world to coin the term ‘prescribed disengagement‘ which was a huge impact in the field of dementia.

As Kate says, “This Prescribed Dis-engagement(TM) sets up a chain reaction of defeat and fear, which negatively impacts a person’s ability to be positive, resilient and proactive.”

“Dementia is the only disease or condition and the only terminal illness that I know of where patients are told to go home and give up their pre-diagnosis lives, rather than to ‘fight for their lives’.”

It is all too easy to become ageist about dementia, but it is the case that dementia encompasses conditions of the age which can affect people below the age of 65. Particular considerations for the so-called ‘young onset dementia’ might include how the diagnosis is arrived at, as well as subsequent impact on real lives such as family or employment.

I personally don’t think that academics can have the moral integrity to present the full picture, when what is truly valuable and a scarce commodity is the expertise and lived experience of people living with dementia.

I think it goes further than ‘working with not for’ in fact: it is more of a question of ‘who’s in the room’ at all. I think of the co-production imperative as ensuring there are ‘no more throw away people’ as per Prof Edgar Cahn. This, as Prof Peter Mittler reminded me recently, has a parallel in the inclusivity literature as ‘No one left behind’.

And above all – it is clear people having had a diagnosis of dementia feel great comfort from the experiences of other people in similar circumstances who have reconfigured their lives accordingly. Indeed this should be the analogous to how people with physical disability are given ‘reasonable adjustments’. Whilst reasonable adjustments is a rather legalistic clunky term, it is an aspect which has been seriously lacking in the drug-focused medical model of dementia.

Kate Swaffer, not just living with a dementia, has an important narrative to tell, which is continually evolving. It is totally unsurprising that her being Chair of Dementia Alliance International (DAI), an international stakeholder group for people with dementia, has been welcomed as a huge success by Alzheimer’s Disease International.

It always seems like a marathon not a sprint, and a long one at that. I thought it was unbelievably clumsy that the World Dementia Council, a steering group on world dementia work, did not have a single representative living with dementia currently.

I indeed wrote an open letter on October 13 2014, which is on the DAI website here. I was of course ecstatic when Hilary Doxford, a mutual friend and colleague, was appointed onto the WDC, as documented here.

Kate is a world-class advocate for people with dementia, and, take it from me, a force to be reckoned with.

English dementia policy may be weighted too much towards prevention, diagnosis and future cure

Shibley Rahman 0 Comments

cake slice

In the words of Ian Dury and the Blockheads, there are indeed “reasons to be cheerful” about the English dementia strategy. We need a strategy, but we need to think about the imperative for “the cure” while appearing to neglect finer details of care. Furthermore, the actual quality, as well as quantity, of diagnosis merits scrutiny.

The need for a strategy

Our English dementia strategy has some key prongs from the clinical perspective – prevention, diagnosis, care, support, palliative care/end of life approaches and cure. How these components are balanced has practical implications for funding and resource allocation. Underpinning this is the need for high quality research, in both cure and care, qualitative and quantitative, non-molecular and molecular, and so on.

England currently does not have an up-to-date dementia strategy. The last ‘five year plan’ expired in 2014, and was supposed to be renewed. Baroness Sally Greengross, the previous chair of the All Party Parliamentary Group on dementia, made clear many times that the intention would be to recapitulate what had worked (or not) in the document from 2009 before progressing. This work, if indeed done, has never been published to the best of my constructive knowledge.

There are regional differences in national strategies, although the benefits of national plans have been described at great length elsewhere (an initiative spearheaded by the charity Alzheimer’s Disease International). Many feel that the first and only English strategy to be published by the Department of Health so far, entitled “Living well with dementia”, is very heavily weighted towards diagnosis and combating stigma through initiatives such as ‘dementia friendly communities’. This is in comparison, say, with the Australian jurisdiction which emphasises, it is said, primary care.

Karen Dening last year mentioned in the Dementia Congress in Telford that cooking dementia policy was ‘like cooking a cake’. Karen who is Director of Admiral Nursing for the leading charity Dementia UK, explained that making a cake required an understanding of the fine balance of ingredients. Too much of one ingredient (or too little) could, in theory, “spoil the cake”.

The importance of the cure but at what cost?

Indeed, the meme “care for today, cure for tomorrow” does merit scrutiny. Take ‘the cure bit’ for a start. In the same way that medicine might provide a cure for a type of cancer, such as an aggressive haematological condition, it might provide a cure for a type of dementia. In other words, in reality, the ultimate “cure for dementia” is likely to arrive in an incremental, piecemeal, gradual fashion for different types of dementia. And the unexpected might happen – for example, immunomodulators might find a ‘new market’ disruptively in the “fight against dementia”.

As such, you don’t ‘cure a headache’ with radical neurosurgery consequent upon sophisticated neuroimaging. You are likely to treat the symptom with a paracetamol. And the same logic goes for asthma and bronchodilators.

In the history of drug development for dementia, the debris of “repeated and costly failures” is a formidable one. But then again it is argued that no omelette was ever made without cracking eggs. It is said, for example, that between 1998 and 2012, there were 101 unsuccessful attempts to develop drugs for Alzheimer’s disease, with only three drugs gaining approval for treating symptoms of the disease.

In the phase before the theoretical obliteration of dementia in some future year, it is likely that care will also be required for tomorrow as well. This is because in someone who is being tried on an orphan drug for dementia a management strategy is likely to include also cognitive techniques, such as cognitive stimulation therapy, currently being examined for the NICE guidance on dementia to be published soon.

Nonetheless, any cures for dementia are to be welcomed not least because they offer hope. The worry, of course, is that there is a “zero sum gain”, in that if people are reaching for their pockets to fund research charities they are less inclined to fund social care for people living with dementia for today.

We have to talk about care

Even with talk of “precepts” from the Budget of last year, social care, not having been ringfenced since 2010, is still on its knees. Public health, which is supposed to deliver the risk mitigation strategy, for dementia has also been an unwise cost saving.

Social care is not essentially about bailing out the NHS in its ‘funding deficit’. It is as a profession concerned about enabling and protecting its client group. I feel few areas are as important as dementia for this.

Dementia, unlike cancer, has no specified “care pathways”. There are more than a hundred causes of dementia, depending on how you count them, and indeed every person with dementia is a unique individual. Integrated person-centred care pathways, and advance care planning especially in light of substantial comorbidities (involving of course carers), would do much to mitigate against the confusion and uncertainty which often accompanies the subsequent trek of a person with dementia through the maze of services.

The minimisation of the rôle of clinical specialist nurses, unlike cancer, is a deeply embarrassing one. The repercussions on the weaknesses in pursuant policy, including continuity of care in different care settings and delivery of palliative and end-of-life approaches, are glaringly obvious to clinicians currently working in dementia care today.

Prevention and seeking the diagnosis

The ‘healthy body, healthy mind’ campaign makes sense in a view that the prevalence of dementia in England  has been said to be falling. There are of course exceptions to every rule. We are all aware of people who’ve completed a healthy treadmill stress test for angina, without problem, only to fall dead in the car park.  Being educated, described as reducing your risk of dementia, did not stop Dame Iris Murdoch or Baroness Margaret Thatcher developing dementia. But progression also means preventing dementia progressing at a fast rate – in the future, maybe wearables and other technology might help in real time.

How a person or their closest ones seek a medical diagnosis for dementia was not straightforward, even before NHS England introduced its disastrous, and ultimately temporary, initiative to provide financial incentive for the diagnosis of dementia. A lot depends on the coping strategies of the people seeking diagnosis, as well as whether the benefit of a diagnosis is more beneficial than any ensuing stigma.

Many people report being “terrified” of then going to memory clinic, and a long wait is akin to ‘justice delayed is justice denied’. But an accurate diagnosis of dementia is important ultimately. General practitioners, already facing a bureaucratic and demand tsunami, may not have adequate resources or training necessarily to feel comfortable, although there is no reason why general practitioners cannot be also the ‘specialists’ making the diagnosis.

But likewise, people with unexplained symptoms, languishing without a diagnosis, is not on. People do deserve to know what medical diagnoses might apply to them. Physicians and other professionals would prefer people living with dementia not to be propelled into a crisis or move to residential setting involuntarily.

Furthermore, there is a school of thought that a correct diagnosis of dementia sums up the notion ‘knowledge is power’. Armed with the information, you can make reasonable adjustments just as for any physical disability, for example memory or visual aids, better signage around your accommodation. It gives you better bargaining power as an upholder of disability rights, as well as gives you specific opportunity to plan for the future, for example power of attorney or will, (on legal loss of capacity or ultimately death.)

Whilst there is a huge emphasis on diagnosis in current English dementia policy, there is consensus that the quality of how the actual diagnosis is closed could be improved in very many cases even now (see an excellent review here).

Conclusion

With so many vested interests involved, the cooking of this particular cake is bound to be complicated. But hopefully with time issues will become much clearer. This is ultimately for the benefit of persons with dementia and their closest ones.

[The author, Dr Shibley Rahman, of this blogpost (@dr_shibley) is an academic physician specialising in dementia. BBC Radio 4 will air a programme in the ‘File on 4′ series entitled “Has a drive to increase the diagnosis and find a cure been effective?’ at 20.00 on 23rd February 2016, presented by Deb Cohen (producer, Paul Grant). Details of this episode of File on 4 are on the BBC website here.]

Project Fear in dementia policy: oranges are not the only fruit

Shibley Rahman 1 Comment

bigstock-orange-tree-46387138

 

In the run-up to the Scottish referendum, Alex Salmond used to tour the TV studios complaining about ‘Project Fear’, the term for how Westminster were arguing that the world would implode if Scotland became an independent country.

It is projected that a device of the ‘Stay in’ campaigns for the UK membership of the EU will be to argue that the UK will inextricably suffer if it leaves the UK, in areas ranging from the economy to defence policy.

A similar fear was used by Lord Andrew Lansley CBE, previous Conservative MP for South Cambridgeshire, arguing that without the Health and Social Care Act 2012 quality in the NHS would hugely suffer unless competition were at the vanguard of policy to drive up quality.

In fact, there was no convincing evidence even at the time that competition would drive up quality. It was noted at the time that competition was the device to shoo-horn private procurement of contracts everywhere, adding hugely to transaction costs, and impeding the development of clinical pathways purely out of clinical choice.

It is clear to me that ‘integration’ has been introduced in English policy, partly to throw people off the scent of Lansley, and partly to accompany Jeremy Hunt MP’s daily reminders of Mid Staffs and ‘rigorous inspection’ comprising his English NHS policy.

We, it is claimed, cannot afford to fund nurses training from a fair society – the fear makes us make nurses pay for their own education through withdrawal of bursaries. We cannot afford to pay for doctors – for fear of being unable to keep loan repayments for the private finance initiative. We cannot have safe staffing of hospitals due to ‘efficiency savings’, aka austerity.

The fear of Mid Staffs indeed has slowed down recruitment in Staffs due to the toxic publicity which ensued, and helped to accelerate implosion of the local health economy. It also has such a powerful odour that nothing ‘gives’ any more – whether it is the continuing failure of NHS Trusts daily now in ‘special measures’, or the lack of publication of NICE work on safe staffing. The NHS has clearly not been cured.

According to the Alzheimer’s Research UK charity, dementia is like an orange. This campaign is effective in breaking down one of the cardinal myths of dementia believed by many. The myth is that dementia is not caused by physical disease.

Watching an orange lose its segments though runs uneasily with the persistence of self and identity in people living with dementia. The disappearance of the orange does nothing I feel to portray the notion of living well with dementia: that it is possible to live well with dementia through design of the home and built environments, powerful local advocacy, cognitive stimulation therapy, assistive technologies, pet or animal therapy, ambient assisted living, well run residential care settings, indoor and outdoor avenues for creativity and the arts, attention to enhancing general physical health, and so on.

No – it’s the fear of a disappearing orange, that once you’re diagnosed with dementia you’re on a ‘devastating journey’ of doom. With the media talking incessantly about ‘dementia sufferers’, this does very little to stop the fear of a diagnosis through ramping up the stigma. But charities have their own agendas.

For as long as I can remember in the recent NHS and social care, people have been calling for proper funding, including for social care a much needed goal in itself, and also in part to mitigate against the delayed discharges incessantly called ‘bed blocking’ in the media. It happens that if my train is late it is unfair to call me a “platform blocker”. It has been known for years, and certain key figures could have campaigned on it had they so wished, that we need a proper system of care coordination, synchronous patient records, better workforce training, a coherent national system of specialist nurses, and so on. And yet the Alzheimer’s Society market their own #FixDementiaCare. Again it’s Project Fear. But charities have their own agendas.

Everywhere you look now there’s the overwhelming spectacle of fear in global policy. People with one of the 130 dementias invariably want to live with hope following their diagnosis, in addition to the hope of a possible cure (or better symptomatic neuropharmacology) for one or two of the dementias by 2025. Replacing this hope with fear is to them a massive disservice.

 

Time to put a stop to selling dementia fads

Shibley Rahman 2 Comments

fads

I completely understand the sheer effort and energy which people put into their initiatives and endeavours to do with dementia.

But the reality is we have a malnourished NHS and social care service, and it’s been getting much worse in the last few years.

Sit down before I tell you this shocking news. Integration is not the ultimate panacea. It would have been possible to put in the infrastructure for elements of care coordination without the hyperbolic use of the term ‘breaking down the silos’ many many years ago.

In fact, ‘integration’ in one form or another has been in political party documents for as long as I can remember meaningfully in the field, and this is approaching twenty years.

New models of care, though admirable, have become a smokescreen for calling out what is wrong in the here and now. And explanations of ‘scaling up’ the ‘pilots’ have thus far been lacking; as have been the practical logistics of ‘spreading the innovations’.

Whilst I am all for beefing up the primary care team, I do not believe that NHS England, crazy though they are, should be thinking of training up a new model army of community pharmacists to diagnose dementia. Dodgy diagnoses would then flood a memory clinic service already at full capacity. If the NHS were running properly, this is a rôle which could be properly supported by GPs or specialist nurses in dementia. And the very worst reason for giving this rôle to community pharmacists would be the dubious motive that dementia-diagnosis community pharmacists would somehow be shielded from “the cuts”.

I think one of my worst snakeoil manoeuvres has been the aggressive pimping of mechanisms to ‘interpret the patient voice’ to clinical commissioning groups. The collapse of the recent Cambridgeshire contract shows what can happen when commissioning can spiral out of control.

The overuse of words like ‘inspirational’ and ‘incredible’ has become rather nauseating; people living with dementia themselves have told me that they find unease at being labelled ‘heroic’.

Genuine co-production including co-design of services by persons with long term conditions (or patients) is a wonderful thing. As Prof Edgar Cahn puts it, it is respecting the ‘core economy’ with no more throw away people.

I have mixed feelings about the Prof Debra Meyerson work on boat rockers. I am inevitably pleased that Dr Raj Mattu, an ultimate ‘boat rocker’ in the actual NHS, has been given a financial settlement after years of distress, but nobody would want to have been through what he has been through. It is either naïvety or sheer stupidity to think that the NHS is a safe culture for “radicals”. It’s almost, instead, got to a time where there needs to be a blossom of real sparky counter-insurgent radicals who can put this bunch of corporate shared values seekers to shame.

I indeed agree that patients are experts in their condition at their own particular time. I also agree that specialists who have been who have been associated with this field for nearly twenty years have something to contribute too.

This is not my beef. It’s the active flogging of ‘involvement’ and ‘engagement’ tools which has been encouraging insidiously a culture of dependency on third parties delivering care; this is been far from encouraging independence at all (of people with dementia that is, not grant applicants).

I have been equally disgusted by the commercialisation of personhood, including the commercialisation of all the contributions from the late Prof Tom Kitwood. These packages of selling care, I feel, have not taken on the field markedly in an original way since the time of Kitwood’s death. But they have been a neat packaging of freely existing original groundbreaking work, from which certain people have financially profited.

I think also it is time to call out some frankly mediocre professors in dementia whose research output or output of ideas has not been that stunning. I think at one extreme I am from an era when FR Leavis was given a lectureship in Cambridge aged around 50, but the hyperbolic titles for some people lecturing in dementia is a disservice to the majority who have contributed extensively to the field instead.

I think it is unfortunate all of this appears to have markedly deteriorated in the last few years. I do think social media has contributed. Democratisation is fine, but cult-like bandwagons are not. There are too many fads in dementia which proper leadership could be calling time on.

Co-production, co-design and co-construction of dementia policy

Shibley Rahman 0 Comments

I will be giving a talk on “Co-production, co-design and co-construction of dementia policy”

to book tickets and for venue details please see here

https://www.eventbrite.co.uk/e/iamsocialwork-presents-iamacademia-tickets-19749806202

Here is the list of speakers for my night!

Jo Moriarty (Researcher, Policy at Kings)
Professor Jill Manthorpe (Professor of Social Work at Kings College London)
Dr. Julia Warrener (Herts Uni Professional Academic Lead for Social Work)
Dr. Shibley Rahman (Author, Dementia Researcher)
Sharon Shoesmith (Researcher, Writer, Public Speaker).

The timing of speakers for Feb 3rd 2016 is as follows 6-9:30pm
6pm arrival
6:30-45 Zoe
6:45-7:30 Jo and Jill
7:30-8 Julia
8-8:20 Break/food
8:20-50 Shibley

The flyer is here.

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There will be pizzas on the night for anyone wondering about food and refreshments will be free – wine, snacks, tea and coffee. That should keep the energy high.

The line up (apart from me) is incredible. I do strongly urge you to come if you’re around and you’re interested in the topic of continuing to pursue research and evidence to better practice. I hope there to be much much engagement and participation for my talk, aimed at qualified social workers or social workers in training.

Please follow the organiser Zoe Betts (@iamsocialcare). Zoe’s motivation for doing this is described here in this excellent Community Care article.

Here is my presentation

A diagnosis of dementia delayed is a diagnosis denied

Shibley Rahman 1 Comment

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The first (and thus far) only English dementia strategy was published by the Department of Health in February 2009. Entitled “Living well with dementia” it was described accurately that under-diagnosis of dementia was the norm.

The current feeling about this diagnosis is that it should be a ‘timely diagnosis’. In other words, it should be delivered in a person-centred way, at a time that is right for the person receiving the diagnosis.

The critical recommendation is that a specialist diagnosis should be provided at some stage.

Extract

The type of dementia is indeed relevant. For example, it is possible to target cardiovascular risk factors, such as bad cholesterol, smoking and high blood pressure, to slow down the progression of vascular dementia. Also, say, in diffuse lewy Body dementia a doctor would be wise to avoid prescribing certain medications.

In Chapter 4 of the Department of Health’s “Living well with dementia” (2009), the issues presented by a badly timed diagnosis are provided.

Currently only about one-third of people with dementia receive a formal diagnosis at any time in their illness. When diagnoses are made, it is often too late for those suffering from the illness to make choices. Further, diagnoses are often made at a time of crisis; a crisis that could potentially have been avoided if diagnosis had been made earlier.

Looking at the reality, it is impossible for GPs who are clearly overstretched (as today’s #LMCConf bears out) to be able to make a definitive diagnosis of dementia in a ten minute consultation (or even a twenty minute consultation if a “double slot”).

The question “do you have problems with your memory?” is clearly a daft screening test as, whatever its sensitivity, its specificity is poor. It will pick up problems in memory ranging from the ‘worried well’ to severe depression.

Secondly, a major problem is in the diagnosis of young onset dementia, defined arbitrarily as dementia before the age of 65. One possible cause of this is posterior cortical atrophy, possibly a variant of Alzheimer’s disease, where the predominant initial symptom is in higher order visual processing. Invariably, memory is OK. Memory also tends to be relatively OK in the frontal form of frontotemporal dementia.

The need for referral to specialist services is a very important one. Hospital doctors have a considerable advantage in being able to make the precise diagnosis of type of dementia, with access to sophisticated neuroimaging, blood tests, detailed cognitive psychometry, brainwave scans (EEG) and also tapping off cerebrospinal fluid through lumbar puncture.

The precise gamut of investigations, in addition to a detailed history and examination of the possible proband of person with dementia (and a history, equally of about an hour, from a reliable witness such as a family member), will depend on how obvious the diagnosis is, perhaps.

Some, in very unusual cases, may even require a biopsy of skin, nerve, muscle or brain.

The need to close the ‘diagnosis gap’ was a laudable good intention of the All Party Parliamentary Group 2012 report entitled “Unlocking diagnosis”.

Prof. Sube Banerjee was one of the co-authors of that important document. At a fringe meeting of a day at the King’s Fund, “Leading change in dementia diagnosis and support” in February 2015,  on which I was included as a member of the main panel discussion, Banerjee returned to the importance of the correct diagnosis of dementia.

Slide 1
The UK National Screening Committee (UK NSC) in January 2015 upheld its recommendation against screening everyone aged 65 and over for dementia.

This is clearly the correct decision to me.

There is no screening test which is sensitive and specific enough to pick up the dementias. Bear in mind there are over a hundred different types of dementia (depending on how you count them).

Dr Anne Mackie, Director of Programmes for the UK NSC, said at the time:

While the current test would identify people with mild cognitive impairment, many of them would not go on to actually develop dementia. The evidence shows us that for every 100 people aged 65 tested, 18 would test positive, but only 6 of these would have dementia and 1 case would be missed.

This means we cannot recommend universal screening.

The whole situation was further complicated with NHS England’s ubiquitously criticised decision to incentivise general practitioners through QOF to make a diagnosis of dementia, leading to some pretty untastely headlines – including even in the Financial Times.

FT

This undermined potentially trust in the doctor-patient relationship, where it was known that there was now financial pressure from Government to make the diagnosis. Some in Big Charity even intimated that it was the general practitioners’ fault for not making the diagnosis, when the medical profession through their training were well aware that there exist complicated issues for why patients seek a diagnosis of dementia (for example as described here by Werner and colleagues in 2014).

So actually what happened was ‘demand management’ in the wrong direction. Jeremy Hunt raised expectations through a media war on late diagnosis of dementia (as below), when all along the critical issue is how long people have to wait to get a correct diagnosis of dementia from a specialist, such as memory clinic.

Hunt

The fundamental issue is that a diagnosis delayed is a diagnosis denied. People languishing in waiting for a specialist referral, to find out whether they have dementia or not, having been told that they might have dementia, is quite sadistic, some might say. Certainly not an approach endorsed by the medical profession.

This is not of course the first and only time Jeremy Hunt has actively done harm from a public health perspective. His other interventions on stroke and skin lesions (from tweet) have been equally potentially disastrous, worthy of a clinician being under a spotlight, some might argue, by his or her regulator.

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But what is happening after this delay while people are waiting for the diagnosis from specialist services?

Some people find out that they don’t have dementia at all. For example, Ken Clasper has blogged openly about how he became re-diagnosed with minimal cognitive impairment, with considerable personal readjustment.

To put it succintly, “mild cognitive impairment” is a clinical diagnosis in which deficits in cognitive function are evident but not of sufficient severity to warrant a diagnosis of dementia (Nelson and O’Connor, 2008).

However, the evidence of progression of MCI (mild cognitive impairment) to DAT is currently weak. It might be attractive to think that MCI is a preclinical form of dementia of Alzheimer Type, but unfortunately the evidence is not there to back this claim up at present: most people with MCI will not progress to dementia even after ten years of follow-up (Mitchell and Shiri-Feshki, 2009).

It is not necessarily the case that a clinician makes the ‘wrong diagnosis’. But this a big deal – as a wrong diagnosis of dementia subjects someone to a pretty life changing event in itself, and also there’ the opportunity cost of not having the actual condition being managed properly?

Firstly, I explained previously how GPs can only make a working diagnosis in severe scare resource restraint in time and funding. There is too much of a rampant blame GPs culture currently.

Secondly, clinical presentations change can all the time. By the time a patient gets to see a professional in a specialist service, his presentation might be more florid or obvious. The symptoms could be more obvious, for example.

Thirdly, specialist services have access to tests which can refine the diagnosis. For example, it is not uncommon for a diagnosis of vascular dementia to be added to a diagnosis of Alzheimer’s disease, if a patient presents with a particular type of brain scan – this information would not necessarily have been known to the general practitioner.

Fourthly, I don’t believe that you can suddenly wake up with dementia one morning and not have dementia the previous day. The development of a dementia is a gradual process; all that changes is whether a particular individual fits within a particular diagnostic criteria.

And these criteria change all the time.

When, a few years back, some clinicians revised the criteria for the aMCI, they were aware that many people with dementia would become re-classified as having aMCI. This ‘reclassification’ of diagnosis might have substantial effects, for example, on a State funding benefits.

In an ideal world, you’d want to follow serially for a while a person with possible dementia to see if that person’s cognition or behaviour is indeed markedly changing. This would be an ideal built-in requirement for the diagnosis of dementia as the most common dementias are by definition chronic irreversible and progressive, caused by conditions of the brain.

The delay while someone is waiting for specialist services serves another function too.

Remember the Government statement about the national screening committee? It also contained the following.

Dr Charles Alessi, dementia lead for PHE, said:

In the absence of a treatment or cure, it is important that we take action to reduce the numbers of people getting dementia, delay the onset of dementia or reduce its impact.

PHE and the UK Health Forum published the ground-breaking Blackfriars Consensus earlier this year, which makes the case for concerted action to reduce people’s risk of dementia by supporting them to live healthier lives by doing things like eating well, being active and not smoking.

The mood music has changed.

Firstly, we’ve got another thrust of policy where we are all drug trial guinea pigs now. And many people have vested interests in promoting the idea that there is a pre-symptomatic phase of dementia, called “pre-dementia”, which is amenable to treatment. This of course is part of the whole problem of the over-diagnosis trend which Dr Iona Heath has brilliantly discussed.

Similarly, I feel Prof John Yudkin has been right to draw attention to the similar phenomenon of ‘pre-diabetes‘, which many of us feel serves the function of opening up new markets, patients who can become customers for drugs. Deborah Orr’s article on over-medicalisation of illness in general is brilliant, and I strongly commend it to you.

Your risk of developing dementia might be made possible with your personal genomic scan being done in the future. And with the results, you might possibly be tempted to seek private health insurance. Risk is fundamental to how that industry works.

It is well known the warmth with which the current Government discusses informatics/Big Data and personal genomics.

Take for example George Freeman MP talking in parliament on 29 January 2016. This is the sort of stuff which public-private collaborations are made of, where the State can underwrite future shareholder dividends in private companies, and where the NHS can finally export an aspect of dementia care as ‘profitable’.

The Hansard entry goes thus:

George Freeman

Public health, despite formidable cuts from the current Government in their spending review, remains big business. This was elegantly discussed in an article in the British Medical Journal on the ‘corporate capture of public health’ in 2012. [Mindell, JS; Reynolds, L; Cohen, DL; McKee, M (2012) All in this together: the corporate capture of public health. BMJ (Clinical research ed), 345. ISSN 0959-8138.]

Secondly, people who are told they ‘maybe have dementia’ can enrol onto research programmes. There is now a national aspiration for the number of people to be enrolled through programmes such as #JoinDementiaResearch. Or people may simply be encouraged to donate directly to charity to fund dementia research, with an agenda skewed in a direction away from quality of care towards ‘future treatments’.

But I do feel, as leading campaigner Dr Martin Brunet clearly does, that we should continually be on guard as to who exactly benefits from the current dementia policy.

An apt starting point will be to know for certain what are the regional variations in the wait to get to memory clinics from primary care. We also need to know roughly want proportion of diagnoses at primary care need to be revised.

And finally, we need to know what to do about this (for example is there a case of further training of health professionals in the diagnosis of dementia?)

What we don’t want is an expedited diagnosis which turns out to be wrong. The leading campaigner Chris Roberts, living with mixed vascular and Alzheimer’s dementia, has specifically warned about this in public conferences.

A quote often misattributed to Joseph Stalin is, “The … of one man is a tragedy, the … of millions is a statistic.” I do not want this debate to blame anyone (especially when the medical profession is doing its utmost for this policy). I want us to learn constructively from where things have clearly gone wrong. This will be for the benefit of all NHS patients.

If the past is a different country, the future possibly will be more so for persons with dementia

Shibley Rahman 0 Comments

back-to-the-future-dates

Medicine was very different in 2015, compared to 1985; even more so than 1955. If the past is a ‘different country’, the future for medicine most certainly is. They will do things very differently there.

I first encountered Richard Susskind’s very challenging work in a building called CentrePoint off Tottenham Court Road. I was there for a conference on the future of the legal professions. Richard was a keynote speaker.

At that time, it was becoming mainstream to question the ‘billable hour’ model of fee charging. Richard Susskind tells of a story when a member of his family was given a holiday job to lick envelopes; and she queried how that made sense as she was being incentivised ‘to take her time’.

And various variants of this story exist. For example, if you were to pay workers to excavate a motorway, financially it would make more sense if workers were given spoons to do this not shovels, if they were being paid per hour.

Whatever your political ‘bag’, one cannot easily argue that the “purpose” of dementia is to keep clinicians or businessmen in gainful employment. Anyone who has experienced professional work in the law or medicine recently quickly realises that there is not a finite demand. In fact, demand appears to be increasing all the time.

I know from my personal viewpoint in the dementia sphere that not all work done by professionals is non-routine work. I welcome very much the debate on the future of the professions which Richard and Daniel Susskind have started.

I never expected, a few years ago, that you could be able to wave your smartphone in the air, and then use an app to capture a few seconds of that song to identify the exact track. There are computers now which can solve the Rubik’s cube; or predict the outcomes of patient applications; even faster than their counterpart humans.

When one considers the ‘expertise’ of senior medical professionals I worked for, a vast majority of their expertise can be attributed to a vast personal databank of patterns of situations they’ve encountered before. As a medical professional spends more time in practise, one could expect legitimately the ‘judgement’ involved in that expertise to be better.

But I don’t think it is object to do this computational predictive task on the basis of millions of cases, rather than tens of thousands, or even hundreds if you’re newly qualified.

I dare say that a computer processing cognitive profiles of people across time can contribute to a ‘commons’ where it might be possible to predict whether someone is likely to be living with a dementia. It might also be possible for this computational task to be completed more accurately. As a patient, I will be most interested in the accuracy of the diagnosis.

The beauty of the thesis presented by the Susskinds is that it forces people in the medical profession to think about what this profession does which is so different. Members of my profession involved in the medicine of dementia do everything from taking blood, filling forms to order MRI scans, look at results, and talk to patients.

I think some aspects of the medical care of dementia does need ‘human input’ more than others. For example, it is hard to conceive of difficult conversations in end of life care to be achieved through a ‘Ask…’ computer, like the sort you see in telesales.

I wholeheartedly agree also that there are tricky issues to consider for an increased rôle of technology. The English law has managed to consider whether it is possible to make a contract with an automatic ticket machine. But I do agree with the Susskind concern of whether you’d want a computer to make a decision to turn off a life support machine, or to decide a life sentence.

But I don’t think the question which the Susskinds articulate is as binary as they would like to present. For example, would you, if you didn’t accept the turn off the life machine decision, feel happy if a computer did part of the decision-making involved in determining a ‘do not attempt to resuscitate order’? One could imagine an algorithm existing, for example on the degree of co-morbidity, or even previous health. It is human nature to look for other humans to blame, or at least hold to account, if something goes wrong.

Older patients and immigrants have been blamed for the rising costs of the health services, but as medicine becomes more advanced technology could be a contributing factor  to these rising costs. Or maybe not. Possibly intelligent use of technology could mean that more routine work is done more inexpensively.

For me there is an unintended consequence of making everyone with a cognitive impairment to be potentially in the early stages of dementia. Far from ‘demand management’, this approach might accidentally open the floodgates inadvertently. This could mean that everyone becomes a potential customer for pharmaceutical companies wishing to sell products, like statins to reduce blood cholesterol in certain susceptible individuals.

This is tricky politically. One could likewise argue that a man in his 40s legitimately should be able to exercise choice in preventive strategies for dementia, rather than wait for his 70s where with advanced dementia his choice might be more restricted as to his choice of care home.

Intrinsically, I do not see the use of technology including artificial intelligence as ‘competing’ with the medical profession. A liberalised approach does not necessarily mean an unregulated approach, and an overregulated approach can sponge up limited resources.

I asked a London black cab driver, who also had a Hailo sign in his window, what his views were. ‘Hailo’ is an app where you can hail a nearby cab by use of your smartphone fitted with GPS. He laughed, and explained, “you can’t regulate against invisibles anyway.” By this he explained some cabs in a liberalised market might be cheaper, but actually some of their cabbies might lack liability insurance for injury of their passengers.

‘Invisibles’ exist currently anyway. A medical professional deciding to prescribe a cognitive enhancer which he or she might have seen in a drug company sponsored event at lunchtime for all you know?

But there is definitely a strong case for matching the supply of professional medical advice to demand. I think for far too long the organisation of healthcare has been through the prism of money as the scarce resource.

I think if we turn this on its head, and see expertise as the scarce resource (and I mean ALL expertise including the expertise of persons with dementia and carers), we could find an altogether different narrative developing as to how to organise medical professional services for dementia in the future.

 

 

Dementia – more than a brand? Lessons from #sharetheorange

Shibley Rahman 0 Comments

In my second book, ‘Living better with dementia‘, with forewords by Kate Swaffer, Chris Roberts and Beth Britton, I discussed in my conclusion the branding of dementia. This discussion runs in parallel with the ‘there’s big money in dementia’ chapter in Kate Swaffer’s landmark book ‘What the hell happened to my brain‘, published only this thursday. In this groundbreaking book, Kate has discussed her life ‘beyond dementia’ (TM).

In 2012, dementia became ‘not just a disease’. It in fact became a very strong brand. At roughly the same time, Dementia Friends became a trademark on the UK trademark register. Further contemporaneously, senior people started giving talks in expensive conferences about ‘making opportunities’ in dementia. Indeed, high street companies which could demonstrate that they were ‘dementia friendly’ were achieving a considerable competitive advantage in marketing terms, whether or not they were genuinely dementia friendly. That is how ‘nudge’ in customer behaviour works in behavioural economics.

Not overselling myself either, but I happened to come top of the year in marketing in my own MBA. This I think is because my first degree was in cognitive neuroscience, so I have a longstanding interest in the relationship between cognition and behaviour. It seems that trademarks have become more than products and services, and that brands have become more than the trademarks. I attended the launch of the new Dementia UK brand in London last year, and we were given an explanation of the meaning conveyed in colours in marketing (a subject very familiar to me from international marketing, as different colours can convey different meanings according to different cultures). It is no secret that the Alzheimer’s Society is undergoing an extensive rebranding at the moment. Branding can serve to consolidate core values with a core audience.

It is therefore no surprise at all that I am interested in the new Alzheimer’s Research UK campaign called #sharetheorange.

Damage caused by dementia can reduce the brain’s weight by the equivalent of an orange, according to the presenter Christopher Eccleston in a new digital campaign for Alzheimer’s Research UK. The campaign, created by AIS London and animated by Aardman, features an emotional plea for support for the charity from the actor, whose father died from vascular dementia after fourteen years.

It uses stop-motion, the familiar technique used by Aardman Animations in Wallace and Gromit, to demonstrate how the disease attacks the brain.

“Like many of you, I’ve witnessed the devastating effects of dementia. But because many people think dementia is just a natural part of aging, they don’t realise that is something that we could one day defeat.”

The text commences with the tension between the public health message ‘it is possible to live well with dementia’ and the imagery of dementia as ‘devastating’. I myself discuss the use of the term ‘dementia sufferers’ in my discussion, and how use of negative imagery can add to the stigma and discrimination faced by people with dementia and carers – even delaying the seeking of a diagnosis, often conveniently blamed by ‘big charity’ as a fault of the medical profession. But it is useful to reinforce the idea that dementia is not a natural part of aging, and the phrase that it is “something that we could one day defeat” reinforces the war and battle imagery of ‘fighting dementia’, a slogan used by a number of Big Charity organisations. You never hear of people who have ‘won their battle against dementia’ – but then again you rarely hear of people trying to live their lives to the full in the mainstream media, with one or two striking exceptions, as that ‘does not sell copy’. Such use of “shock tactics”, in the context of a shock doctrine, is well known for subverting decision making down a particular track.

“I’m asking you to do one little thing on behalf of Alzheimer’s Research UK – just to share this film about an orange. You see the truth is dementia is actually caused by diseases just like cancer or AIDS. Alzheimer’s disease is the biggest cause of dementia. It physically attacks your brain, gradually destroying it, piece by piece, stripping away everything that makes you.. until you die.”

I found this particularly interesting. There are over 120 different types of dementia, depending on how you count them. The “Alzheimerisation” of all dementias is a long running theme in dementia, though it is true that Alzheimer’s disease is the most common cause of dementia worldwide. In practical terms, one is more likely to be fundraising for a lab investigating a type of Alzheimer’s disease, than any of the numerous other types of dementia.

Heather Wright, Executive Producer & Head of Partner Content at Aardman has been reported as saying:

“Animation is a great way of communicating difficult messages, delivering them in an easily understandable and memorable way. Using the orange as a metaphor for the brain makes this film very strong because the idea and the execution work perfectly together.”

But Eccleston continues:

“It physically attacks your brain gradually destroyed it piece by piece by piece until it strips away everything that makes you you and then you don’t in fact the brain of a person with Alzheimer’s is so damaged it weighs a hundred and forty grams less than a healthy brain.”

The starting point that the dementias are diseases of the brain is important, and is indeed this is one of the core five messages of “Dementia Friends”. But the imagery is scary, and potentially a bit of a kick in the groin to those 47 million people in the world currently living with dementia.

Whilst the ad builds up to hope for the future, my concern is identifying the current offering for people currently living with dementia. To use the orange analogy, how can you best use the segments which are left to go about your day to day life?

There are some people – like me in fact – who feel that self and identity are preserved, despite a dementia ‘disease process’, until the very end. The film makes the assumption that there is a direct link between loss of brain structural matter and overall loss of function, which is of course generally true, but there are 1000 billion neurones in the brain, many of which are in fact redundant. This redundancy therefore lends weight to the notion of cognitive resilience, and indeed is embedded in the prevention arm of policy, as education building up a buffer in some against dementia: otherwise known as “use it or lose it”. One presumes that future therapies which are effective at stopping ‘in its tracks’  the build up of toxic substances in the brain in Alzheimer’s disease prevent loss of volume of the brain (a direct link which has never been robustly shown, though intuitively correct.)

Eccleston continues,

“While scary this does prove it’s a physical disease and not just part of aging research has beaten diseases in the past and with your help research can defeat dementia so place to share the orange.”

I suppose that there’s more than one way to peel an orange.

I am mindful here of the ‘Lovewarks’ theme from Saatchi and Saatchi, and the work of Kevin Roberts.

In an article in Journal of Advertising Research in March 2006, John Pawle wrote,

“Once such theory of modem branding is the theory of “Lovemarks” as put forward by Kevin Roberts (2004), CEO of Saatchi & Saatchi. Roberts states that the idea of a brand is starting to “wear thin” and the world around it sterile.”

Pawle characterises these “lovewarks” as  “giving birth to great stories; bring the past, present, and future together; tap into people’s dreams; celebrate myths and icons; and inspire.”

Emotional memory is processed in a very different way to memory for facts and events in the brain. Stating the obvious, your cognitive processing is very much dependent on your state of arousal and motivation. This, ironically, is an observation very well known to people living with dementia as well as their significant others.

So therefore one would legitimately expect the success of this present digital ad campaign to be governed by the efficacy of the interaction of the viewer with the subject matter (high). This would make them want to “#sharetheorange”, in an ideal world making the ad ‘go viral‘.

So – at least people are talking about dementia – raising awareness of dementia. All of us in policy have our individual views about whether ‘it’s the right type of awareness’.