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Fake involvement is not enough. Genuine participation matters.

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).

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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.

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Together we are beautiful

Fern-Kinney-Groove-Me

He walked into my life
And now he’s taking over
And it’s beautiful
Yes it’s beautiful

I’ve gone with better looking guys
He’s gone with prettier looking girls
But now we’re beautiful
I think we’re beautiful

I don’t need love affairs anymore
I don’t need love affairs anymore
Can’t you see, it’s the chemistry
You really must agree together we are beautiful
We are so beautiful

I am the rain, he is the sun
And now we’ve made a rainbow
I think it’s beautiful
It’s really beautiful
I don’t need love affairs anymore
I don’t need love affairs anymore
Can’t you see, it’s the chemistry
You really must agree together we are beautiful
We are beautiful

And if the whole world fell in love
Just like me and my man
This would be beautiful
This would be so beautiful
I don’t need love affairs anymore
No I don’t need love affairs anymore
Can’t you see, oh it’s the chemistry
And together we are beautiful
We are beautiful
Can’t you see, it’s the chemistry
You really must agree together we are beautiful
We are beautiful
Beautiful
We are beautiful

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Kate Swaffer is admitted onto the World Dementia Council

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.

 

 

 

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

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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.

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

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.]

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Language and dementia. Why are we making such poor progress?

Andy Tysoe tweeted this only this morning.

The sheer number of the ‘breakthroughs’ in dementia treatments has been breathtaking in the last few years, particularly since 2012. This of course is a highly manipulative agenda. The aim of this propaganda is to convince you that progress is being made in dementia research, and that you should continue to fund it. The truth is – the vast majority of the breakthroughs are useless.

Nevertheless, we are where we are. Social care funding has not been ringfenced in England since 2010. You are not going to get any stories about this on a frequent basis. English dementia policy needs an infrastructure for coherent integrated person-centred care, with a trained workforce, and care pathways. One large charity pumping out ‘Friends’ is not enough. The same charity has decided to campaign on #FixDementiaCare with cheap tacky photoshoots from MPs, having been ineffective on the issue in the last few years. One should legitimately be asking for stronger clinical leadership this being the case. The English dementia strategy expired five years after 2009 – it is now 2016.

Language sets the political agenda everywhere.

Even words such as ‘engagement’ and ‘involvement’ compound the impression of ‘does he take sugar?’ All too often people with dementia have been speaking in public on the subject of being engaged in events on dementia, rather than real issues in dementia policy – such as the need for funding in social care. Organisers of events invite people with dementia at the last minute, with this act of tokenism being highly insulting in effect. Working groups if the participation at worst is illusory might add a further layer of marketing, and often appear like a nice little earner, potentially, for the bureaucrats organising them. But the real effect is far more damaging – this friendliness has been profoundly disempowering, and highly obstructive. Often the purported ‘co-production’ and the ‘patient voice’ are not genuine at all – the relationship defined by Nesta in 2009 is defined by three simple words “equal and reciprocal”, often forgotten, and becomes a trite trivial piece of marketing, sadly, instead.

Compare this to a whole book on the subject written by Kate Swaffer, “What the hell has happened to my brain?”.

I have been dumbfounded and truly enormously saddened by those who claim to be gurus in engagement and involvement being so silent on Kate’s book. But this for me speaks volumes.

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Kate, not only living with dementia, is about to embark on a Ph.D. Whilst medics go all Captain Cavemen mode about the number of diagnoses (of whatever quality) they’re making, Kate is demonstrating what should be happening. That people living with dementia should be given every single resource to help them live ‘beyond the diagnosis’ as Kate calls it, I feel strongly, is an essential imperative in both domestic and international policy in dementia. This change to a rights-based approach, viewing dementia as a disability, has totally changed the mood music.

Here’s the original paper we did with others on language and dementia some time ago; it was in fact my second ever poster at an international conference on dementia (though I have done considerably more now.)

[pdf-embedder url=”http://dementia-wellbeing.org/wp-content/uploads/2016/02/An-analysis-of-75-English-language-online-articles-on-the-G8-dem.pdf”]

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

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.

 

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Time to put a stop to selling dementia fads

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.

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

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

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