Tag Archives: language

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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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Does combating stigma offend the 'rights based approach' in dementia?

Let’s for the sake of brevity keep the definition of ‘stigma’ short – but of course it has to be attempted in some way.

Stigma, according to the current Oxford English Dictionary is defined as follows firstly.

“A mark of disgrace associated with a particular circumstance, quality, or person:the stigma of mental disorder to be a non-reader carries a social stigma.”

One of the issues about human rights is that you can’t ‘pick and mix’ human rights. You have to take the full package. You can’t buy into some, and not the others. They apply to everyone however.

In vogue at the moment is a ‘rights based approach’, but, since mooting the issue, Daniella Greenwood (who is here at the ADI Conference 2015) voiced some concern it could encourage a checklist approach.

Checklists are essentially useful, I feel, as the information in them, and can provide inappropriate totality.

Like ‘person centred care’ (the phrase that is), the operationalisation and marketing can obfuscate the real sentiment.

For example, prior to the necessary legislation, racial discrimination was lawful in South Africa, so Gandhi was the ‘boat rocker’ to use modern NHS slang.

There was nothing on the checklist about racial discrimination so notionally it was not a legal issue.

Freedom of expression is a human right, article 10 in the English jurisdiction.

It immediately for many conjures up the famous saying,

“I do not agree with what you have to say, but I’ll defend to the death your right to say it.” ― Voltaire

Along with #JeSuisCharlie and other horrific incidents, there has been further scrutiny of the wider operation of this right.

Take for example this, “The Right To Offend? Mehdi Hasan Denies ‘Absolute Right’ To Freedom Of Speech”.

” Speaking opposite Times columnist David Aaronovitch at a HuffPost/Polis debate, on the right to offend, Mr Hasan argued free speech was being “fetishized” and claimed many free-speech campaigners in the west were guilty of “brazen hypocrisy.”

“How can you construct a civilised, cohesive society if we go round encouraging everyone to insult each other willy nilly? Yes we do have a right to offend but it’s not the same as having a duty to be offensive. You have a responsibility not to go out of your way to piss people off. I have the right to fart in a lift, but I don’t do it because it is offensive.

“Some people want the right to be offensive but then get cross when people are offended.” “

There are various ways in which ‘dementia’ has become medicalised, which has supported the power of the medical profession over others in discourses, arguably. In the 1960s, warehousing of people with problems with mental health meant that drugs could be easily delivered. “Living better with dementia” in the community would’ve have been unheard of.

When Robin Williams took his own life, and who had been diagnosed with a dementia, immediately the potential for media explosion was commenced.

This subject combined two taboos – “dementia” and “suicide”.

Take for example this Daily Mail article entitled, “Robin Williams’ suicide was triggered by hallucinations from a devastating form of dementia”.

The article soon reveals,

“Court documents obtained by TMZ reveal that Williams, who was found hanging from a belt at his home in California last August, was suffering from dementia with Lewy bodies.”

Whether someone ‘suffers from dementia’ has been revisited numerous times, and I don’t intend to  cover it here.

But the starting point, I feel, is that the stigma surrounding dementia goes a long way to explaining why people who have received a diagnosis of dementia don’t want to tell people about the diagnosis: sometimes called “coming out” with the diagnosis, to reflect perhaps a secret that could be hidden.

In response to Williams’ death, in the blog “Humanist Voices”, “Mental Illness: Stigma, Silence, Suicide — or Support?” Audrey in September 2014 had the following to say:

“Mental illness need not define a person as it often has in the past, but we have a long way to go to truly help those in need. Over the centuries, we as a society have ostracized, ridiculed, imprisoned, institutionalized, over-drugged, shamed, blamed, stigmatized and forgotten those who struggle with diseases of the mind. Quite unlike the history of physical ailments — which has had a distinctly different and more promising trajectory. Today we like to think we have a more enlightened view of mental illness, but countless people still fear the stigma of “coming out” with their mental health “issues” to peers and colleagues. How many among us try to hide our own struggles or those of our family members?

In the last half century society has moved away from overcrowded and often abusive mental institutions or asylums to a more humane community-based mental health approach. However, neither public funding nor insurance plans have ever provided the necessary support and resources to make such programs very effective. In fact, the lack of adequate community mental health services has given rise to jails and prisons becoming warehouses for the mentally ill in recent years. Even Minnesota faces a shortage of providers and hospital beds for those with serious mental illness as a recent legislative roundtable in west-central Minnesota revealed. And since William’s (sic) death, local media outlets such as Minnesota 2020 and MPR have been shining a light on the growing need for more mental health services across the state.”

So here we have one argument – that stigma is exacerbated by people not wanting to talk about their dementia diagnoses (“under expression”). Or, in the alternative, people feel bombarded with negative memes about dementia, e.g. “suffering”, “horrific”, “tsunami” or “time bomb”, in the general media. In any case, it can easily be argued that freedom of expression is a right that needs defending now as much as ever; it is therefore important to argue, say, freedom of expression “is the cornerstone of democracy, a vital foundation for tolerant societies.”. As this Amnesty International blogpost goes onto say, “According to the Committee to Protect Journalists, 61 journalists were killed last year in direct reprisals for their work. The most dangerous country was, unsurprisingly, Syria. Just over a week into 2015, and the CPJ’s figure is already at five. The most dangerous country? France.”

But is the content of the media something we should take some notice of?

Yes – for a start the ADI Conference has language guidelines.

According to Miriam Bar-on (2000), in the USA, ” based on surveys of what children watch, the average child annually sees about 12 000 violent acts,5 14 000 sexual references and innuendos,6 and 20 000 advertisements.”

Television has the potential to generate both positive and negative effects. It turns out that an individual child’s developmental level is a critical factor in determining whether the medium will have positive or negative effects.  Current literature suggests that perhaps physicians can change and improve children’s television viewing habits, or even excessive television watching contributes to the increased incidence of childhood obesity?

And interpretation of language is not new.

According to the Stanford Encyclopaedia of Philosophy, “Hermeneutics” is defined as follows:-

“The term hermeneutics covers both the first order art and the second order theory of understanding and interpretation of linguistic and non-linguistic expressions. As a theory of interpretation, the hermeneutic tradition stretches all the way back to ancient Greek philosophy. In the course of the Middle Ages and the Renaissance, hermeneutics emerges as a crucial branch of Biblical studies. Later on, it comes to include the study of ancient and classic cultures.”

Kate Swaffer, Co-Chair of the Dementia Alliance International and living with a dementia, argued this recently in Dementia Journal in an outstanding paper.

“It is therefore imperative that we aspire to change views of and about people with dementia, and begin to include them in the research and conversations about them. [Ken] Clasper (2014) writes a blog about living with dementia, and said: ‘…we wish to raise awareness of dementia, is that we all live on hope, that we can in our own little way go a long way to remove the stigma which we hear of every day in dementia’.”

So this is a case of ameliorating under-expresssion of information, consistent with the notion that prejudice and discrimination arise from lack of information and/or ‘lack of changing your mind’ when presented with new information.

And Kate explains, why despite Voltaire, it is in fact a big deal to be offended,

 “Whilst, we may have changed, we are all there. Whilst we may in fact suffer, many of us are not sufferers, and find that term offensive. We no longer refer to people with physical or intellectual disabilities as retarded or as retards, as it is offensive to them, even though technically they [we] are retarded. I place myself in the disabled category, as I have many disabilities caused by the type of dementia I have. Technically, people with dementia are ‘demented’ too; however, most of us find that and other terms offensive, and have a right to stand up and speak out about it.”

I have seen with my own eyes how the medical profession culturally in an institutionalised way harbour anti-dementia memes like “demented” when talking with other doctors. I’ve been on ward rounds where the Consultant has turned to junior medical staff, with the person with advanced dementia waiting to be discharged after an operation, and said, “But don’t worry about him as he’s got dementia”.

We have furthermore to be extremely careful or vigilant that the global policy of “dementia friendly communities” does not promote a sense of ‘otherness’, defeating the prime objective of inclusive.

Swaffer (2014) warns:

“The determination by governments and Alzheimer’s societies and organizations around the world to promote dementia friendly communities and dementia champions still mostly supports the ‘about them, with them’ position, which has the potential to further stigmatize people with dementia. To date, only a few people with dementia have been included in the discussions, planning and decisions about what makes a community or organization dementia friendly.”

But there’s little doubt in my mind that dementia friendly communities is a valuable concept, even if the nosology isn’t quite right?

Danielle White from Alzheimer’s Australia NSW hopes that “understanding of the condition will turn into action”, a similar if not identical to the sentiment behind the UK’s “Dementia Friends” initiative.

She has said: “These figures show why it’s so important for us all to look at how we can create communities where people living with dementia are included, respected, valued, and supported to maintain a good quality of life.”

In a paper entitled, “Dementia Discourse: From Imposed Suffering to Knowing Other-Wise”. Gail J. Mitchell, Sherry L. Dupuis, and Pia C. Kontos, this intriguing diagram pops up on page 12 which I felt was a useful summary infogram about the ecosystem of a stigma.

otherness

Venance Dey has said that, “awareness about the disease was almost non-existent in Ghanaian communities hence the formation of the AG to raise awareness about dementia in local communities that would encourage government to build systems for all those affected to have access to quality care and support they needed.”

But we should care about the age at which stigma memes might get implanted.

Psychologist Dr Jess Baker has for example in Sydney’s west observed a group of Scouts watching DVDs about dementia.  The video forum is part of a UNSW-led project that aims to create a more dementia-friendly society by educating the next generation. Information gleaned from the children will be used to develop an online education program, designed to align with Australia’s education curriculum.

.“We know that children are more responsive than adults to anti-stigma education because their beliefs are not as firmly developed,” according to Dr Jess Baker.

But the impact of mass media and popular culture should not be underestimated. A group of 11–14 year olds interviewed for a British dementia study made repeated references to the “dementors” in the Harry Potter movie series – half-dead creatures that feed on happy thoughts and memories leaving their victims in a mindless state.

According to Wikipedia,

“Rowling, by her own account, created the dementors after a time in which she, in her own words, “was clinically depressed”. Dementors can therefore be viewed as a metaphor for depression.”

First problem – the confusion between depression and dementia. Indeed, some depression might get confused as dementia (or vice versa); but there is a co-morbidity between depression and dementia.

“Despite their attachment to human emotion, dementors seem to have difficulty distinguishing one human from another, as demonstrated by Barty Crouch Jr.’s escape from Azkaban, wherein they could detect no emotional difference between the younger Crouch and his mother.”

Having abnormal emotional responses can be a feature of the frontotemporal dementias. Indeed, Prof John Hodges from NeuRA and Prof Simon Baron-Cohen have both been very interested in how the neural circuitry involved in reading others’ minds might go awry in behavioural variant frontotemporal dementia.

“The dementors are “soulless creatures… among the foulest beings on Earth”: a phantom species who, as their name suggests, gradually deprive human minds of happiness and intelligence. They are the guards of the wizard prison, Azkaban, until after the return of antagonist Lord Voldemort.”

source Melissa (30 July 2007). “J.K. Rowling Web Chat Transcript – The Leaky Cauldron”. The-leaky-cauldron.org.

In popular culture, dementia is often portrayed as robbing people of their happiness.

“The presence of a dementor makes the surrounding atmosphere grow cold and dark, and the effects are cumulative with the number of dementors present. The culmination of their power is the ‘Dementor’s Kiss’, wherein the dementor latches its mouth onto a victim’s lips and consumes its soul or psyche, presumably to leave the victim in a vegetative state.”

And of course there are people like me who feel that your “Self” is not “robbed away from you” during dementia.

And finally,

“Beneath the cloak, dementors are eyeless, and the only feature of note is the perpetually indrawn breath, by which they consume the emotions and good memories of human beings, forcing the victim to relive its worst memories alone.”

Emotional regulation is affected quite late on in Alzheimer’s disease because of the usual time path of the condition, but the analogy of which memories are “robbed first” does not even correspond to actual life – in actual life, in the dementia of the Alzheimer’s type, recent memories go much earlier than later memories (the “so called temporal gradient”), and in fact worst memories might be emotionally charged such that they’re actually very vivid (a similar phenomenon happens with the effect of the stress hormone cortisol on memory formation.)

If we ‘go’ with the “rights based approach”, it’s pretty likely we’ll have to take ‘the full package’, which includes freedom of expression conversing with a person with dementia but also a freedom of expression of a person with dementia. Except…. there’s a catch here. If somebody’s acting badly with a person with dementia, it might be ‘freedom of expression’. If the person with dementia dares to say something back, it ends up being ‘agitation’, ‘aggression’ or ‘challenging behaviour’.

It essentially is a finely balanced deck of cards, where it just takes one thing to make the whole thing come crashing down.

cards

Reading

Bar-on, M.E. (2000) The effects of television on child health: implications and recommendations,  Arch Dis Child 2000;83:289-292 doi:10.1136/adc.83.4.289.

Swaffer, K. (2014) Dementia: Stigma, Language, and Dementia-friendly Dementia 2014 13: 709

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It's not the word 'dementia' itself which is stigmatising, but the words which are used around it

“the truth is dementia now stands alongside cancer as one of the greatest enemies of humanity”

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An analysis of 75 English language web articles on the G8 dementia summit

Background

Experience has suggested that academic scientists can be as ‘guilty’ as the popular press in generating a ‘moral panic’ causing mass anxiety and hysteria. Take for example the media reporting of the new variant Creuztfeld-Jacob disease, a very rare yet important cause of dementia (Fitzpatrick, 1996).

How dementia is represented in the media is a good surrogate market of how the issue can be represented in certain segments of the culture of a society (Zeilig, 2014).

According to George, Whitehouse and Ballenger (2011), the concept of dementia, a term which they attribute to Celsus in the first century A.D. — has long carried “social implications for those so diagnosed and has been associated with reduced civilian and legal competence, as well as with entitlement to support and protection.

A range of emotionally charged metaphors about dementia pervades the popular imagination, and these are found in newspaper accounts, political speeches, and in both documentary and feature films. The ‘G8 dementia’ summit allowed many of these recurrent motifs to resurface unchallenged.

I’ve been intrigued how the G8 Dementia Summit was covered in the English-speaking media on the web. So I did a Google search for “G8 dementia”, on the UK Google site. It only came up with languages in English article, and I included the top 75 search results.

I excluded some search results. I excluded webpages consisting of only videos. Flickr photos or Pinterest boards. I decided to exclude articles less than 100 words long.

Aim

The aim of this piece of work was to complete a preliminary exploration of how the #G8dementia summit was reported on the internet in the English language.

The literature in this field is very small, and no study to my knowledge has ever been undertaken for the actual reporting of the G8 dementia summit which was unprecedented.

Methods

For the text analysis, done online using this tool, I excluded the author names, titles, location of authorship of the article (e.g. London). also excluded the endings, invariably, “Read more” “You may also like”, “You can read more about” and list of other ‘links’ to look at. I excluded duplicates. Finally, one article which was largely a compilation of tweets was excluded.

Results

Unsurprisingly, the word “dementia”  featured 955 times, but encouragingly “people” featured 280 times. I found this quite gratifying as I have just published a book on the rôle of the person and the environment for living well with dementia – though the vast majority of articles did not have wellbeing as their main thrust.

Wordie

I think the problem in English policy is revealed in the finding that “research” appears 334 times, and yet “wellbeing” is there fewer than eight times. The facts that “data” is used thirty times, with “collaboration” 28 times, hint at the overall drive towards data sharing for the development of cross-country trials and personalised medicine.

There seems to be a greater need for “funding” somewhere, a word used 66 times. There’s clearly an “international” focus, a word used 103 times.

The word “carers” was only used thirty times – a bit of a knee in the groin for the caring community?

The term “social care” is used 14 times across the 75 articles, but this is dwarfed by the use of the term “innovation” used 37 times. “Innovation” is of course a key meme of Big Pharma, as demonstrated by this infographic by Eli Lilly, a prominent company in dementia neuropharmacology.

TTIP

The ideological bias towards the medical model for dementia is reflected in the frequency of the word “disease” or “diseases”, totalling 203; “treatment” or “treatments”, totalling 91; and “cure” or “cures”, totalling 72.

There’s clearly a bias towards Alzheimer’s disease, in that “Alzheimer” was used 145 times, with the word “vascular” used only six times. Strikingly, no other forms of dementia were mentioned. There are probably about a hundred known forms of diagnoses comprising the dementias, including some very common ones such as “frontotemporal” or “diffuse Lewy Body”.

Various authors, including Kate Swaffer who lives with a dementia herself, have often remarked on this bias known in the literature as “Alzheimerisation” (Swaffer, 2012).

“Cameron” is mentioned 60 times, and “Hunt” is mentioned 24 times. “Hughes”, as in Jeremy Hughes, CEO of the Alzheimer’s Society, is only mentioned 5 times.

It’s also interesting to see which other conditions are mentioned alongside dementia in these 75 articles. Only three were, in fact: these are “cancer” (45 times), HIV (25 times) and AIDS (29 times); treating HIV and AIDS as distinct, which is of course is not necessary to do, and there may have been no intention on the part of the journalists to use these words specifically in their narratives.

Thankfully, the usual dramatic terms were not used often.

“Timebomb” was only twice – once by the BBC

“It also called on the World Health Organization to identify dementia as “an increasing threat to global health” and to help countries adapt to the dementia timebomb.
[http://www.bbc.co.uk/news/health-25318194]

and then by a blog for the “Humanitarian Centre:

“Dementia has been branded a ‘timebomb’, as ageing populations will exacerbate the problems and costs associated with dementia.”
[http://www.humanitariancentre.org/2014/01/tackling-dementia-the-g8-dementia-summit-2]

The terms “bomb” or “bombs” were only used four times, and encouraging one of these was complaining about in a passage complaining about military metaphors.

“To make matters worse people living with dementia were exposed to scaremongering rhetoric. We already know that people living with dementia are directly affected by stereotypes and negative attitudes to dementia. The widespread use of military style metaphors – time bombs, battles, victims and fights in addition to media promotion of the term ‘suffering from dementia’ combine to increase fear of the disease for those living with it. This fear exacerbates the isolation and exclusion that people with dementia often feel following diagnosis.”
[http://www.centreforwelfarereform.org/library/by-date/g8-dementia-summit.html]

The dementia “time bomb” crops up frequently in U.K. broadsheets (Furness, 2012) and tabloids. Time bombs are devices that could go off at any time; their most common use has been in politically motivated terrorism. The association of dementia with terrorist tactics is fascinating, invoking the sense of a threat

The only use of the word “tide” was in a direct quotation from a speech by Jeremy Hunt, current Secretary of State for Health:

“We have turned the global tide in the battle against AIDS. Now we need to do it again. We will bankrupt our healthcare systems if we don’t,” he said.”
[http://www.reuters.com/article/2013/12/11/us-dementia-g-idUSBRE9BA0HE20131211]

The danger of flooding has long been associated with dementia. A 1982 U.K. report was entitled: “The rising tide: Developing services for mental illness in old age” (Arie and Jolley, 1983).

Note Hunt’s ‘wordie’ contains ‘heartache’, ‘threats’, ‘battle’, ‘dreading’, ‘stigma’ and ‘fight’, but also includes ‘diagnosis’, ‘people’ and ‘research’.

Jeremy Hunt's wordie

It is indeed fascinating the on-running theme of promoting dementia research in the absence of a context of wellbeing.

David Cameron’s ‘Wordie’ is quite tame.

Cameron wordie

But the consequences for this media messaging are potentially quite profound.

Limitations

There is a sample bias introduced with how Google orders its ranking.

Page ranking is not only calculated on the basis of traffic, but also in terms of degree of linkage with other websites.

It is possible that higher ranking articles, particularly online versions of newspaper articles, have a common root such as the Press Association, leading to a lack of independence amongst authors in their coverage of the Summit.

Conclusion

Whitehouse concludes a recent abstract as follows:

“Creating a more optimistic future will depend less on genetic and reductionist approaches and more on environmental and intergenerative approaches that will aid in recalibrating the study of AD from an almost exclusive focus on biochemical, molecular and genetic aspects to better encompass ‘‘real world’’ ecological and psychosocial models of health.”

Encouragingly though the frequency of words such as ‘timebomb’ and ‘flood’ were not as much as one might have feared, from the (albeit small) literature in this field.

If you assume that the 75 articles form a representative cohort of copy on the G8 dementia summit, the picture presented has a clear emphasis on a magic pharmacological bullet for dementia. The copy represents not a balanced debate, on behalf of all stakeholders, but reads like a business case to invest more in neuropharmacological-based research into dementia.

References

Arie, T., & Jolley, D. (1983). The rising tide. British Medical Journal, 286, 325–326.

Fitzpatrick, M. (1996) Creutzfeldt-Jakob disease and bovine spongiform encephalopathy, BMJ, 312, 1037.3.

George, D.R., Whitehouse, P.J., Ballenger, J. (2011) The evolving classification of dementia: placing the DSM-V in a meaningful historical and cultural context and pondering the future of “Alzheimer’s”, Cult Med Psychiatry. 2011 Sep;35(3):417-35.

Furness, H. (2012, March 7). Dementia is ‘next global health time bomb.’ The Telegraph. Retrieved from http://www.telegraph.co.uk/health/healthnews/9127801/Dementia-is-next-global-health-time-bomb.html

Swaffer, K. (2012) Dementia, denial, old age and dying, blogpost here.

Whitehouse, P.J. (2014) The end of Alzheimer’s disease-From biochemical pharmacology to ecopsychosociology: A personal perspective. Biochem Pharmacol. 2014 Apr 15;88(4):677-681. doi: 10.1016/j.bcp.2013.11.017.

Zeilig H. (2014) Dementia as a cultural metaphor, Gerontologist, 54(2), pp. 258-67.

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When we know when "the war against dementia" is over?

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In writing this article, I have no intention of ‘sanitising’ dementia. I’m mindful of two recent comments which fell in my path indirectly: “Dementia is such a cruel disease” (by a daughter of someone living with dementia), and “I don’t know of anyone who doesn’t suffer something as a result of his or her dementia”. The purpose of this article is just to review common motifs in dementia media communications.

When will know when the “war against dementia” is over? This is not an altogether frivolous question, as a MP once famously asked Tony Blair in Prime Minister’s Questions, “When will the war against terrorism be over?”

On 28 November 2013, about dementia, Jeremy Hunt wrote in the Telegraph: “It is a truly horrible disease“.

This set the ‘mood music’ for some of the G8 dementia conference, but the G8 conference was indeed a very positive occasion.

Recently, in “The Loss of Sadness”, Horwitz and Wakefield (2007) wrote that, while depressive disorder can certainly be a devastating condition warranting medical attention, the apparent “epidemic” in modern culture reflects the way the psychiatric profession (perhaps under the influence of pharmaceutical companies looking to widen markets) has understood and reclassified normal human sadness in the DSM-IV as a largely abnormal experience.

The popular metaphorical framing of dementia seems to operate on two levels. It is generalised as a vast, natural or monstrous force that we must “fight”, and it is also located as a very specific condition that affects individuals in extreme ways. In both cases, the effect is to make us feel both terrified and relatively powerless. As Terry Pratchett, who is reported in the public media as having a condition akin to posterior cortical atrophy, viewed: “People seem to think of Alzheimer’s as something rather terrible and dreadful, almost as if witchcraft is involved”

Literally meaning ‘‘away’’ or ‘‘out’’ of ‘‘mind’’ or ‘‘reason’’ in Latin, the actual term ‘‘dementia’’ entered the English language from the French ‘‘de ́mence’’ via the French psychiatrist Philippe Pinel, who made notable contributions to the categorisation of mental disorders in the late 18th and early 19th centuries. Over the centuries, the phenomenology of dementia has been causally associated with witchcraft, moral degeneracy, bad blood and a dissipation of vital energy from the brain, among other factors.

The Wordie for David Cameron’s speech at the G8 summit is indeed interesting, and to be fair in the vast majority is largely upbeat and positive. Whilst there is no recording of the speech on YouTube, the full text of the speech at the ‘G8 dementia summit’ at Lancaster House on 11 December 2013 is available here.

Wordie

The opening to this speech was pretty chilling, however:

“It doesn’t matter whether you’re in London or Los Angeles, in rural India or urban Japan – this disease steals lives; it wrecks families; it breaks hearts and that is why all of us here are so utterly determined to beat it.”

What exactly is this “it”? What kind of creature is it which steals, wrecks and breaks? This is the fundamental problem. Dementia is not a creature, it’s not an alien, it’s not a mega monster even. It’s an umbrella term covering about 200 different conditions where parts of the brain lost structure and function, leading to problems for that individual; however certain functions remain in the earlier stages, which is why it is potentially unfair to use such graphic language.

It is therefore with some irony Jeremy Hunt had concluded his piece in the Telegraph thus:

“With advances in medical science, the commitment of governments across the world and a willingness from everyone to change attitudes, we truly can be the generation that beats dementia.”

And it’s not the first time David Cameron had used this turn of phrase. In his keynote speech about increasing funding for dementia, the U.K. Prime Minister talked about “the quiet crisis, one that steals at lives and tears at the heart of families” (March 26, 2012). As was noted at the time, this language echoes descriptions of primeval monsters such as Grendel in the Anglo Saxon poem “Beowulf”. Dementia becomes an invader or evil monster that creeps up on people and steals them from themselves. Correspondingly, people living with dementia correspondingly become “victims”.

BS

Noticeably, the Wordie includes “malaria” and “AIDS”. This is because of the following line:

“In generations past, the world came together to take on the great killers. We stood against malaria, cancer, HIV and AIDS and we are just as resolute today.”

Jeremy Hunt in the Telegraph had written:

“In the Sixties people were too scared to talk about cancer. In the Eighties the same happened with HIV/Aids. After a long and painful journey, we are now much more open about both – and better able to tackle them.”

It seems that this parallel with HIV/AIDS and cancer has been very carefully choreographed. There are indeed some successful treatments for many cancers, but cancer like dementia is an umbrella term covering a wide variety of conditions. A “cure for dementia” is meaningless as a term, as the frontotemporal dementias particularly common in the younger age group are a different pathological entity to the most common type, the dementia of the Alzheimer type.

And how exactly has cancer done?  According to the world statistics from WCRF, there were an estimated 12.7 million cancer cases around the world in 2008, of these 6.6 million cases were in men and 6.0 million in women. This number is expected to increase to 21 million by 2030. How is a similar “war” against HIV/AIDS doing? According to AmfAR, more than 35 million people now live with HIV/AIDS, 3.3 million of them are under the age of 15; in 2012, an estimated 2.3 million people were newly infected with HIV, and 260,000 were under the age of 15. Every day nearly 6,300 people contract HIV—nearly 262 every hour.

Dementia has replaced cancer as the “scourge of modern times”. The discourses of the scientific community reinforce this pervasive sense of horror about the dementias. For example, the prevalence of dementias is described in dramatic terms as an “epidemic”. The prevalence of dementia in the UK has in fact thought to be falling in recent times (hence explaining the formidable Prof Burns’ relative unease about dementia being called a ‘timebomb’ by Emily Maitlis on BBC News, a ‘timebomb’ which crucially scientists have failed to address.)

In 2011 in an article entitled “Dementia crusade’s £20m breakthrough”, the Care Services Minister at the time announced a multi-million pound boost in funding for the fight against dementia. The word “crusade” achieves an interesting multiplicity of effects, including an emphasis on faith and battle and on something that not only is metaphysical but can also be “won.” The overall impression is of dementia as huge and ancient, and of massive significance. It appears beyond our grasp and can only be understood through reference to massive natural phenomena (usually disasters) or in biblical/mythical terms.

Flooding is a particular popular literary turn. The danger of flooding has long been associated with dementia. A 1982 UK report was entitled: “The rising tide: Developing services for mental illness in old age“. Rising tides continue to inform the language of contemporary politicians when discussing dementia.

Cameron likes it too, apparently. He referred to the need for Britain to change its attitude to the “rising tide of people suffering with dementia” (May 26, 2012). Alistair Burn’s article “The number of people with dementia in England: turning the tide – Alistair Burns” continued this “tide” theme.

The press and television documentaries abound in “personal” stories about dementia and in tales of cures that are imminent or preventative measures that can be taken to ward it off. Classifying the hundreds of different types of dementia has also been politically powerful. It has undoubtedly facilitated funding and research into diseases for which it is implied that there will eventually be a cure. Ultimately, this broad brush approach is now being used to argue for a “one glove does not fit all” approach: the big corporate winner of personalised medicine, as explained by Cameron thus:

Take just one initiative – Bio Bank. More than half a million people have volunteered to take part in this providing blood samples, getting their vital signs checked, so we can see how diseases like dementia get signalled. The plan is to use Bio Bank to take brain scans of up to 100,000 people – allowing us to see the earliest stages of Alzheimer’s and other diseases. That is the kind of ambition we’re seeing here in the UK ambition that should give hope to people right around the world.

There’s something subtle at work here with the words “ambition” and “ambitious”. Of particular concern to those worried about overmedicalisation is that some experts are now arguing for treating asymptomatic (‘‘normal’’) people with ‘‘abnormal’’ imaging and cerebrospinal fluid biomarker profiles with long-term preventative therapies. This is exactly what seems to be happening here with Cameron’s comment. In a sign of desperation of Pharma wishing to resurrect an ‘ailing industry‘, multi-national Big Pharma believes that early treatment is key to finally achieving a treatment success of any meaningful magnitude.

There are some expected financial memes: like “economy”, “genomics” and “reinvest”. Whilst the spokesmen officially don’t officially promote particular ‘brands’, the speech explicitly mentions UK life sciences companies, like Ixico, Cambridge Cognition, Psychology Online and Proteome Sciences, in developing new tests for Alzheimer’s Disease. As such dementia can’t be seen as “wealth creating”, so the need to promote private markets and innovation is a delicate one to take. However, David Cameron has increasingly appeared giving speeches in the manner of CEO wishing for corporate investment. As such, ‘cure’, not ‘care’, is where the money is at possibly. Cure’s in the wordie; care is not.

“Fight” is THE BIG prominent word. This recurring linguistic device in the cultural framing of dementia is the reliance on military and war-like metaphors. Cameron has been fighting for some time, it’s a wonder he himself isn’t exhausted. On March 26, 2012, he proclaimed rather triumphantly: “We need an all-out fight-back against this disease; one that cuts across society.”

The dementia “time bomb” crops up frequently in U.K. broadsheets and other tabloids. Time bombs are devices that could go off at any time; their most common use has been in politically motivated terrorism. The association of dementia with terrorist tactics is fascinating, invoking the sense of a threat. So when will we know when the war against dementia is over..?

Now listen carefully. As sure as night follows day, academics won’t be able to fight these horrible journalists, destroying the ambitions of people trying to live with dementia in a positive light. Whilst the electoral timebomb continues to tick tock, we can find a cure for this government and their partners trying to demonise those people currently trying to live with dementia. While the war will be long, we can turn the tide on the Pharma companies destroying minds with their false promises, and encourage a new dawn after this crisis where wellbeing interventions are treated seriously at last.

See what I did there?

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Are individuals living with dementia "recipients" of care?

Language is very important. Only this week, the media was stuffed full of talk of dementia being a ‘horrible disease’, and people ‘suffering’.

A recent Telegraph article cited, “Health Secretary Jeremy Hunt says it is “utterly shocking” that only half of people suffering from dementia are being formally diagnosed.”

Society has a certain image of dementia. It really is no use denying that this image is horribly negative, and feeding on this fear can be low-hanging fruit for raising funds through charity.

In this scheme of thinking, those with the dementia are only viewed through the prism of their illness, and this is often reduced to the image of its last and most tragic phases.

It is as if as soon as a diagnosis of a progressive dementia is made, the person in question, it is perceived by the rest of society, automatically becomes incapable of taking any autonomous decisions, loses his/her personality and identity and immediately needs to be cared for.

Language

In reality, however, this illness can develop quite slowly: between the moment when it is diagnosed and the terminal phase, there may be years of development. Moreover, people living with the illness can rarely have the opportunity to express their thoughts and feelings about it: there is communication about them, but only rarely with them. The individual sadly disappears behind the blanket label of an illness.

The term “suffering”, however, sounds negative, and does not support the concept of “personhood”, and certainly does not fit with a philosophy of “hope” and “wellness”.

The way the NHS has latterly been structured as a market also reinforces this customer-supplier master-servile relationship. Dementia care is a ‘service’ you can pay for, with or without a personal health budget.

The dominant notion itself that the need of people with dementia to socialise should be met by “services” is disempowering, for the concept of service incorporates the notions of “providers” and “recipients”; of the “helpers” and “the helped”, of “us” and them”.

These notions further perpetuate the stigmatising assumption that people with dementia are only able to participate in relationships as “receivers”, and that relating to them is a problem for those who do not have the disease: they further advance the widespread perception that people with dementia are, essentially, a “burden” on their families and society.

This term “burden” can perhaps help validate the ‘burden’ some caregivers experience, but should not be assumed and should be avoided when speaking in generalities such as public presentations.

This language and terminology are in desperate need of change, and the prevailing perception of people past the first stages of dementia as just receivers of care, and users of services, needs drastic reframing.

The truth is that, as the symptoms of the disease progress, people with dementia can still play an active role in society, if provided with support, and this support can very often be provided by fellow citizens, rather than by professionals paid to deliver a service.

The purpose of person-centred language is to recognise the impact of language on thoughts and actions, to ensure language does not diminish the uniqueness and intrinsic value of each person.

Personhood is pivotal. This is the standing or status that is bestowed upon one human being by others in the context of relationship and social being. It implies recognition, respect and trust.

The aim is to create the positive conditions where the person can live without stigma; where people are treated with warmth and authenticity, listened to without judgment and are given opportunity for self-expression.

There are, however, ways to ‘reframe’ this debate.

Framing is a fast developing concept, as much in communication sciences as in other disciplines. This is partly due to the fact that it is a rather flexible approach that lends itself to many applications.

New framework

When there is a question relating to knowing how a particular subject is presented, in the media for instance, framing immediately springs to mind.

Instead of painting the illness as a homogenous and unchanging totality, it would be preferable to place the accent on its progressive and developmental nature.

One can put the accent on continuing to be a real person despite the decline due to the illness: acknowledge the personality, the identity and the life journey of those with a progressive dementia.

One can also develop empowerment and social inclusion with people with a progressive dementia. Such individuals are more than passive and dependent consumers of help and care services. They have resources that should be mobilized. The principle of inclusion implies that society is composed of all its citizens. However, this needs competent leadership.

Let those who living with dementia speak. It will provide others with one of the most powerful counter-examples in relation to the current dominant image, which often makes the individual disappear behind his/her illness.

Let your respect for those living with the dementia be obvious in what you have to say.

It is useful also never to forget that people with Alzheimer’s disease also have their own life story, their own personality and character. This is because their long-term memories are relatively preserved, due to a phenomenon first characterised by the French neurologist Ribot in the 1880s. Enable these aspects to be expressed too.

Those who disseminate messages, especially via texts designed to influence people, may deliberately choose a frame that the reader is supposed to pick up and appropriate so as to henceforth view reality in this way.

Given that frames form part of any culture, many of them are common to both the sender and the recipient of a given message.

The question of whether framing is a conscious process remains open to discussion: how far will the writer of a given text deliberately choose a frame that serves his own interests?

As we approach the G8 leading on the subject of what is important in dementia diagnosis, research and care, it is all the more important that we frame the discussion properly.

There are so many stakeholders in English dementia policy, it can be quite uncertain know where the current dementia policy has come from.

David Cameron has often argued that ‘it is not where you’ve come from, it’s where you’re going to’. If one of the goals is destigmatising dementia in society, how we articulate the present debate today is vital to our progress tomorrow.

This means not talking about ‘horrible’ and ‘suffering’ in a way as to encourage ‘moral panic’.

This means treating people with dementia, living at all stages with any particular condition, with the dignity they deserve; this will enormously help carers too.

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