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If you're an unpleasant person, a week of 'dementia awareness' will make no difference

There’ll be a third of people roughly who’ll hate whatever you do.

There’ll be a third of people roughly who’ll love whatever you do.

There’ll be a third of people roughly who’ll be completely indifferent.

 

This is advice my father gave to me shortly before he died. In society, there will always be a hardcore group of selfish bastards.

Many people who develop long term conditions in adulthood report how people whom they had considered ‘friends’ suddenly desert them.

They say ‘sayonara’ when times get tough. They are not there for you when it matters.

Sadly, in the real world, with all the best will in the world from policy-makers, there will very many people for whom this becomes an extremely negative experience on receiving a diagnosis of dementia from a clinician.

The shock of receiving that diagnosis can be profound, leading almost for the recipient of the diagnosis to enter the first stage of the Kubler-Ross ‘five stages of grief’: denial.

And of course doctors can come to the wrong conclusions especially if the information is slightly incorrect: so in an ideal world, every first diagnosis would be confirmed through a specialist look at the supporting evidence including perhaps further tests.

There has never been a definitive statement that there has been a concomitant increase in resources for services for specialist dementia services for this national policy in increasing dementia diagnostic rates. This is one issue which the All Party Parliamentary Group for dementia under The Baroness Greengross should examine urgently, I feel.

Unfortunately, if ‘friends’ of yours suddenly leave you in droves, you will end up lonely, even if you yourself are a pleasant person.

“I have never felt so lonely” is a very common saying to hear a person living well with dementia saying, even in this age of ‘Dementia Friends’.

So, there’s the rub, schemes such as ‘Dementia Friends’ will make certain people collect a badge for making themselves feel better about having done something superficially for dementia, and think ‘job done’.

But it’s the action which follows which matters. This might include contributing to a dementia charity, with a very small proportion of revenue ultimately going towards research into living well with dementia.

The original Japanese ‘befriending’ scheme meant exactly that. The aim was to ‘befriend’ a person living with dementia, to break down the usual taboos.

So it is not altogether surprising that, if society still shows stigma and discrimination towards people living with dementia, there are some people who might recognise symptoms but prefer to keep schtum.

Keeping schtum might be delaying to see the Doctor, or delaying doing something about the diagnosis, such as having it confirmed elsewhere or telling close friends about it.

In the cost-benefit analysis, telling people about the diagnosis might be accompanied about fears of losing your driving licence (as indeed a person from South London living with vascular dementia told me three days ago at the Alzheimer’s Show). Or it could be accompanied by fears about job prospects. Or it could be accompanied by fears shopping or using a bank.

Whilst I disagree with the name, you can sympathise with the general good intentions of  ‘dementia friendly communities’. And perhaps award ceremonies which celebrate good practice, if they break down discrimination and stigma, might help.

Seeing people living well with dementia might help turn around negative perceptions of certain people. This might include Norman McNamara’s infectious ‘Run for the Sun’, the winner in the 2014 Riviera Fringe Festival Anthem Competition. Or it could include Sir Terry Pratchett continuing to produce successful books whilst living with a diagnosis of a type of dementia called posterior cortical atrophy.

But one is immediately cautious about embarking on a route where people living with dementia need to prove they are successful to prove their worth. This is reminiscent of some people from ethnic minorities who had to prove themselves academically and professionally to be accepted. At one extreme, for example, should be welcoming immigrants into this country only if they can contribute something economically to this country? Nigel Farage has often spoken about the engineer from New Zealand being discriminated against compared to perhaps an artisan from a country such as Latvia.

But it is clearly going to be difficult to change direction of a huge ocean liner. One week’s ‘Dementia Awareness’ is necessary but insufficient, possibly. People’s basic knowledge about dementia could be improved with some basic facts – e.g. that it is not part of normal ageing, many people live well with dementia, dementia is not just about memory – as per the ‘Dementia Friends’ campaign from Public Health England delivered by the Alzheimer’s Society.

However, people with dementia often report that they need to be given time and for others to be patient from both professionals and non-professionals. People with dementia often report being rushed in settings ranging from supermarket aisles to acute hospitals. Such a sentiment of feeling rushed more often than not gets tagged onto a feeling of being a burden, and can become profoundly depressing.

When professional shills for raising money into dementia get accompanied by ‘cost’ rather than ‘value’, and when public perception of some in society about people living with dementia can be low, the situation can get worse rather than better.

When we use terms such as ‘dementia friendly communities’, it can engender a feeling of ‘them against us’, and people with dementia become ‘somebody else’s problem’.

Of course, many people are not so pathetic, and such negative generalisations may not be justified with recent successes in raising awareness such as G8dementia or ‘Dementia Friends’.

But we do need to worry as a society if things have not fundamentally changed as a society in perception and identity of people living with dementia. Some people still refuse steadfastly to believe there are some people living well with dementia. It could be the case that people actively avoid talking about the ‘D’ word in much the same way they once avoided the ‘C’ word, and this is reflected in the comparative lack of funds raised for dementia and cancer respectively.

‘Dementia Awareness Week’ is running here from 18-24 May 2012.

If one more person can become a bit more understanding about living with dementia, there are plenty of reasons to be cheerful?

Please support us on Facebook this week.

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Who were the biggest winners and losers of the G8 dementia summit? My survey of 96 persons without dementia

G8

Background

The G8 summit on dementia was much promoted ‘to put dementia on top of the world agenda’.

It is described in detail on the “Prime Minister’s Dementia Challenge” website.

I went only last Monday to Glasgow to the SDCRN conference retrospective on the G8 dementia. It was a sort-of debrief for people in the research community about what we could perhaps come to expect. And what we’d come to expect, just in case any of us had thought we’d dreamt is was the idea of identifying dementia before it had happened or just beginning to happen and stopping it in its tracks then and there with drugs.

This is of course a laudable aim, but an agenda utterly driven by the pharmaceutical industry. My philosophy (not mine uniquely) “Living well in dementia” is called “non-pharmacological interventions” to denote a sense of inferiority under such a construct.

This slide had a lot of criticism

Aim

There has never been a media report on people’s views about the G8 dementia summit.

There has never been an analysis of the messaging of this summit in the scientific press, to my knowledge.

This study was conducted as a preliminary exploratory study into the language used in a random sample of 75 articles in the English language.

Methods

I completed a survey of reactions to the G8 dementia summit held last year in December 2013. I recruited people off my Twitter accounts @legalaware and @dementia_2014, and there were 96 respondents. Responses to individual items varied from 63 to 96.

I used ‘SurveyMonkey’ to carry out this survey. With ‘SurveyMonkey’, you cannot complete the survey more than once.

(I have also already collected 19 detailed questionnaire responses from Clydebank which I intend to write up for the Alzheimer Europe conference later this year, also in Glasgow. And also six people living with dementia also responded; and I’ll analyse these replies separately. I reminded myself by looking at the programme of the summit again what the key topics for discussion were – drugs, drug development and data sharing, with a sop to innovations and provision of high quality of information. It is perhaps staggering that there has been no detailed analysis of who benefited from the G8 dementia, but given the nature of this event, the media reportage and the events of my survey, this retrospectively is not at all surprising to me.)

Exclusions

Persons with dementia were directed to a different link (of the same survey.)

Results

The results encompass a number of issues about media coverage, the relative balance of cure vs care, and who benefited.

Media coverage

Overall, most people had not caught any of the news coverage on the TV (56%) or radio (55%). But most had caught the coverage on the internet, for example Facebook or Twitter (66%). 87% of people said they’d missed the live webinar. It was possible to answer my survey without having caught of any of the G8 seminar, however.

So what did people get out of it and what did they expect? Most people did not think the summit was a “game changer” (53% compared to 16%; with the rest saying ‘don’t know’), although the vast majority thought the subject matter was significant (82%) (n = 90).

Therefore, unsurprisingly, a majority considered the response against dementia to be an opportunity for policy experts to produce a meaningful solution (58%). However, it’s interesting that 24% said they didn’t know (with a n = 90 overall.)

In summary, they had high hopes but few thought it was a good use of a valuable opportunity to talk about dementia.

Many of us in the academic community had been struck in Glasgow at the sheer “terror” in the language used in referring to dementia. A large part of the media seemed to go for a remorseless ‘shock doctrine’ approach. Prof Richard Ashcroft, a medical law and bioethics expert from Queen Mary and Westfield College, University of London, wrote a very elegant piece about this, and his personal reaction, in the Guardian newspaper.

In terms of language, the respondents were consistent in not viewing the response against dementia as a “fight” (61%), a “war” (84%), a “battle” (72%) or an “epidemic” (70%) (n ranging from 83 to 86). 56% of people considered it unreasonable to speak of “turning the tide against dementia”. In terms of personal reactions, 82% considered themselves not to be “shocked” by dementia.

91% of people thought it was appropriate to talk of ‘living with dementia’ in the early stage (n = 85), but 82% of people did not think it was more appropriate to talk of people ‘suffering from dementia’ at this early stage (n = 86). In retrospect, I should’ve asked whether the appropriate phase was ‘living well with dementia’, so I suppose nearly 91% endorsing ‘living with dementia’ at all is not surprising. I have previously written about the use of the word “suffering”, as it is so commonly used in newspaper titles of articles of dementia here, though I readily concede it is a very real and complex issue.

living well suffering

The opportunity presented by the G8 dementia summit: cure vs care

Despite all the media hype and extensive media coverage of the G8 dementia summit, 70% of people “did not feel excited about the world or country’s response to dementia” (n = 86).

But it is possibly hard to see what more could have been done.

The presentation by Pharma and politicians for their dementia agenda was extremely slick. This may be though due to a sense of politicisation of the dementia agenda, a point I will refer to below.

Q21

Early on in the meeting, World Health Organization Director-General Magaret Chan reminded the delegates – including politicians, campaigners, scientists and drug industry executives – how much ground there was to cover.

“In terms of a cure, or even a treatment that can modify the disease, we are empty-handed,” Chan said.

“In generations past, the world came together to take on the great killers. We stood against malaria, cancer, HIV and AIDS, and we should be just as resolute today,” Cameron said. “I want December 11, 2013, to go down as the day the global fight-back really started.”

It is therefore been of conceptual interest as to whether dementia can be considered in the same category as other conditions, some of which are obviously communicable. In my survey, people reported that that, before the summit, they would not have considered dementia comparable to HIV/AIDS (88%), cancer (70%), or polio (92%) (n = 86).

This is interesting, as a common meme perpetuated also by certain parliamentarians (who invariably spoke about Dementia Friends too) was that the same sort of crisis level in finding a cure for dementia should accompany what had happened for AIDS decades ago.

Biologically, the comparisons are weak, but it was argued that AIDS, like dementia now, suffered from the same level of stigma. Dementia, however, is an umbrella term encompassing about a hundred different conditions, so the term itself “a cure for dementia” is utterly moronic and meaningless.

Also in my survey, 67% of people reported that they did not feel more excited about the future of social care and support for people living with dementia (n = 85), and virtually the same proportion (66%) reported that they did not feel excited about the possibility of a ‘cure’ for dementia (defined as a medication which could stop or slow progression) (n = 85).

This reflects the reality of those people living in the present, perhaps caring for a close one with a moderate or severe dementia.  It had been revealed that budget cuts have seen record numbers of dementia patients arriving in A&E during 2013. Regarding this, it was estimated that around 220,000 patients were treated in hospital as a result of cuts in social care budgets, which left them without the means to get care elsewhere.

It is known that the government has cut £1.8 billion from social care budgets, which is in addition to the pressure being applied to GP surgeries. In 2008 the number of dementia patients arriving in A&E was just over 133,000. The concern is that the Alzheimer’s Society, while working so close to deliver “Dementia Friends”, is not as effective in campaigning on this slaughter in social care as they might have done once upon a time. Currently, we now have the ridiculous spectacle of councils talking about dementia friendly communities while slashing dementia services in their community (as I discussed on the Our NHS platform recently).

Why Big Pharma should have felt the need to breathe life into the corpse of their industry for dementia is interesting, though, in itself. Pharma obviously is ready to fund molecular biology research, and less keen to fund high quality living well with dementia, and there is also concern that this agenda has pervasively extended to dementia charities where “corporate capture” is taking place. A massive theme of the G8 dementia summit was in fact ‘personalised medicine’. For example, there is growing evidence that while two patients may be classified as having the same disease, the genetic or molecular causes of their symptoms may be very different. This means that a treatment that works in one patient will prove ineffective in another. Nevertheless, it is argued the literature, public databases, and private companies have vast amounts of data that could be used to pave the way for a better classification of patients. According to my survey, despite ‘personalised medicine’ being a big theme of the summit, strikingly 66% felt that this was not adequately explained. There’s no doubt also that the Big Pharma have been rattled by their drugs coming ‘off patent’ as time progresses, such as donepezil recently. This has paved the way for generic competitors, though it is worth noting that certain people have only just given up on the myth that cholinesterase inhibitors, a class of anti-dementia drugs, reliably slowed the progression of Alzheimer’s disease in the majority of patients.

Who benefited?

In terms of who ‘benefited’ from the G8 dementia summit, I asked respondents to rate answers from 0 (not at all) to 5 (completely).

Research First of all, it doesn’t seem researchers themselves are “all in it together”. For example, these are the graphs for researchers (molecular biology) (n = 68) and researchers (wellbeing) (n = 68), with rather different profiles (with the public perceiving that researchers in molecular biology benefited more). This can only be accounted for by the fact there were many biochemical and neuropharmacological researchers in the media coverage, but no researchers in wellbeing.

37 38

Pharmaceutical industry But the survey clearly demonstrated that the pharmaceutical industry were perceived to be the big winners of the G8 dementia (n = 68).

Ministers are hoping a government-hosted summit on dementia research will help boost industry’s waning interest in the condition, and to some extent campaigners have only themselves to blame for pinning their hopes on this one summit.

The G8 Summit came amidst fears the push to find better treatments is petering out, and it is still uncertain how effective some drugs currently in Phase III trials might be, given their problems with side effects and finding themselves into the brain once delivered.

39

And the breakdown is as follows:

table

Charities  The survey also revealed a troubling faultline in the ‘choice’ of those who wish to support dementia charities, and potential politicalisation of the dementia agenda. It has been particularly noteworthy that this recent initiative in English policy was branded “the Prime Minister Dementia Challenge”, and ubiquitously the Prime Minister was (correctly) given credit for devoting the G8 to this one topic.

A previous press release had read,

“Launched today by Prime Minister David Cameron, the scheme, which is led by the Alzheimer’s Society, people will be given free awareness sessions to help them understand dementia better and become Dementia Friends. The scheme aims to make everyday life better for people with dementia by changing the way people think, talk and act. The Alzheimer’s Society wants the Dementia Friends to have the know-how to make people with dementia feel understood and included in their community.. By 2015, 1 million people will become Dementia Friends. The £2.4 million programme is funded by the Social Fund and the Department of Health. The scheme has been launched in England today and the Alzheimer’s Society is hoping to extend it to the rest of the UK soon. Each Dementia Friend will be awarded a forget-me-not badge, to show that they know about dementia. The same forget-me-not symbol will also be used to recognise organisations and communities that are dementia friendly. The Alzheimer’s Society will release more details in the spring about what communities and organisations will need to do to be able to display it.”

Therefore, the perception had arisen amongst the vast majority of my survey respondents that large charities were big winners from the G8 dementia summit. This is perhaps unfair as there was not much representation from other big charities apart from the Alzheimer’s Society, for example Dementia UK or the Joseph Rowntree Foundation.

I feel that this distorted public perception in the charity sector for dementia is extremely dangerous.

And this finding is reflected in the corresponding graph for ‘small charities’. Small charities were not represented at all in any media coverage, save for perhaps ambassadors of smaller charities there in a personal capacity at the Summit.

The numbers sampled for their views on large and small charities were both 67.

large and small charities

Paid carers and unpaid caregivers 

The major elephant in the room, or maybe more aptly put an elephant who wasn’t invited to be in the room at all, was the carers’ community.

Only recently, for example, it’s been reported from Carers UK that half of the UK’s 6.5 million carers juggle work and care – and a rising number of carers are facing the challenge of combining work with supporting a loved one with dementia. The effects of caring for a person with moderate or severe dementia are known to be substantial, encompassing a number of different domains such as personal, financial and legal. It is also known that without the army of millions of unpaid family caregivers the system of care for dementia literally would collapse.

These are the graphs for paid (upper panel) and unpaid (lower panel) carers and caregivers (n = 65 and n = 66 respectively), with the most common response being “not at all benefiting”.

caregivers

Politicians

But when asked if the politicians benefited, the result was very different.

Admittedly, few politicians were in attendance from the non-Government parties in England, and none from the main opposition party was given an opportunity to give a talk.

Both Jeremy Hunt and David Cameron gave talks. There is clearly not a lack of cross-party consensus on the importance of dementia, evidenced by the fact that the last English dementia strategy ‘Living well with dementia’ was initiated under the last government (Labour) in 2009.

The overall impression from 64 respondents to this question that politicians benefited, and some thought quite a lot.

politicians

Corporate finance A lot of discussion was about ‘investment’ for ‘innovation’ in drug research. Andrea Ponti is a highly influential man. He has been Global Co-head of Healthcare Investment Banking and Vice Chairman of Investment Banking In Europe of JPMorgan Chase & Co. since 2008. Mr. Ponti joined JPMorgan from Goldman Sachs, where he was a Partner and Co-head of European healthcare, consumer and retail investment banking, having founded the European healthcare team in 1997.

At the G8 dementia summit, Ponti advised that biotechnology and drug research can be a ‘risky’ investment for funders, rebalance of risk/reward needed. Ponti specifically made the point the rewards for investing in drug development had to be counterbalanced by the potential risks in data sharing (which are not insubstantial legally across jurisdictions because of privacy legislation).

Anyway, in summary, it was perhaps no surprise that my survey respondents felt that corporate finance were big winners of the summit (n = 65).

45

Persons with dementia And also for persons with dementia themselves?

One would have hoped that they would have been big winners according to my survey respondents, but the graph shows a totally different profile (with a minority of respondents rating that they benefited much.)

This is very sad.

66 answered this question.

The overall picture was this.

PWD1

And the breakdown of results was this.

PWD2

What will people do next?

Finally, it seemed as if the G8 Dementia Summit produced a ‘damp squib’ response with people in the majority neither more or less likely to donate to dementia charities (69%), donate to dementia care organisations (74%), get involved in befriending initiatives (72%), talk to a neighbour living with dementia or talk to a caregiver of a person living with dementia (58%), or get involved in dementia research (69%) (n varying from 73 to 78).

Limitations

Respondents were all in the UK, but the G8 dementia summit was clearly targeted in a multi-jurisdictional way.

It could be that there is huge bias in my sample, towards people more interested in care rather than Pharma. My follower list does include a significant number of people living with dementia or who have been involved in caring for people with dementia.

Conclusion

It would be interesting to know of any in-house reports from other organisations as to how they perceived they felt benefited from the G8 dementia, for example from patient representative groups, Big Pharma, carers and the medical profession. Pardon the pun, but the results taken cumulatively demonstrate a very unhealthy picture of the public’s perception in the dementia agenda in England, who calls the shots, and who benefits.

Given that this G8 dementia was to a large extent supposed to establish a multinational agenda until 2025, in parallel to the multinational nature of the response of the pharmaceutical industry, for those of us who wish to promote living well with dementia, it is clear some people are actually the problem not the solution.

This is incredibly sad for us to admit, but it’s important that we’re no longer in denial over it.

 

 

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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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I am a person, not a diagnosis: deconstructing Kate Swaffer's poem on dementia

I have always understood “living with dementia” to mean that that person carries on with life, knowing that there is an underlying medical phenomenon somewhere. To me, it’s exactly the same as living in recovery from alcohol dependence. If I were to have another alcoholic drink, I wouldn’t be able to stop drinking. It’s a pathological reaction. I view it in the same way that some people have an allergy to peanuts. I don’t actively think about not drinking all day – it’s just something that’s part of my life.

It did genuinely come as a surprise to me, however, that some individuals view ‘living with dementia’, as living with somebody close to them with a dementia. I respect this viewpoint, and it is clear that no offence is intended there as well.

Kirsty

I don’t know what a person living with dementia (in my sense of the phrase) “feels like”, in the same way philosophically I cannot know what he or she perceives as the colour red. But an attempt to understand what one of the dementias might be like for that person I believe is pivotal for care, consistent with Tom Kitwood’s seminal work on personhood. In this framework, your prime concern is the person (rather than patient) with one of many types of dementia. A person will be a ‘product’ of experiences unique to him or her, and his or her own physical health, and not just a sum of his or her chemical receptors in the brain.

For medical professionals, a diagnosis can operate at a number of levels. One is individual, pertaining to someone’s identity or concept of being ‘sick’. One can be institutional (in relation of that individual to clinicians, politicians or social movements). We have seen this year how some politicians have been clamouring for a slice of the dementia diagnosis action. One can be societal, which depends entirely on how diagnosis frames that particular entity. For example, society might view that a delayed diagnosis for a dementia, where there is no obvious reason for this delay, is simply unacceptable.

There are in theory four possible options. With a diagnosis, a person may find himself or herself with a ‘disease’ or ‘illness’that potentially could be cured or treated, ‘healthy’ or no illness (but subject to future monitoring), ‘at risk’ of developing a future disease, or an illness with no disease (something wrong but not fitting conventional protocols of medicine.)

But as Blaxter warned back in 1978, “The activity known as ‘diagnosis’s is central to the practice of medicine but is studied less than its importance warrants.”

A diagnosis is by no means a trivial issue. It has become powerful because of the close proximity in academic and practitioner circles between legal, insurance and medical jurisdictions.

A diagnosis can have important consequences. Those consequences might be “administrative”, allowing somebody to access resources in health care; it can “legitimise” sickness (or the rather perjorative notion of “deviance”); or can encourage research into the existing evidence base.

A person as a result of a diagnosis may adopt “a sick role”, after Talcott Parsons’ seminal work in 1951. This construct of ‘sanctioned deviance’ is not without its critics,  who argue that this encourages a culture of blaming ‘the sick’.

For the purposes of the medical profession, a diagnosis can be seen as a diagnosis of a cure or treatment. Indeed, for many, the identification of a cure or treatment would contribute to diminishing the stigma associated with, or discrimination to the detriment of, a person with a diagnosis. These days, particularly for dementia perhaps, given arguably the lack of a robust cure or disease-modifying treatments for the most common form of dementia known as Alzheimer’s disease, having a diagnosis might be seen as enabling rather than labelling (after Marian Naidoo.)

Kate Swaffer, who has herself written candidly about her personal experiences of dementia, concludes her recent poem, “If they are not diagnosed with dementia…They cannot be living with it.”

In explanation, Kate Swaffer further writes:

“Some people have agreed vehemently with my opinion about the use (or mis-use) of the term ‘Living with dementia’ and others have disagreed just as strongly, while others have sought to question further, to look at themselves differently, or to question me. I too have sought to look at this topic through others’ eyes, to see it differently and from as many sides of the same coin as humanly possible.”

There is indeed more to this than immediately meets the eye. Take autism, for example.

Contrary to popular assumption, people diagnosed with so-called “mild forms of autism” often don’t fare any better in life than those with severe forms of the disorder. That’s the conclusion of a recent study that suggests that even individuals with normal intelligence and language abilities struggle to fit into society because of their social and communication problems.

In fact, people diagnosed with pervasive developmental disorder-not otherwise specified (PDD-NOS) are no more likely to marry or have a job than those with more disabling forms of autism, according that study.

There’s been a growing realisation that diagnostic criteria are not “gospel“, and a number of medical phenomena have seen a number of patient groups query this; these include myalgic encephalitis, B12 deficiency and Lyme Disease.

In the case of autism, such difficulties might be mitigated against by merging of pervasive developmental disorder into the autism spectrum. And a similar phenomenon is taking place for the reclassification of the dementias as “neurocognitive disorders” (of major and minor types.)

It can’t easily be denied though that some individuals find a diagnosis helpful in that such a diagnosis might help to make sense of the past, present, and future (see for example “midlifeguy”‘s experience here).

Kelly Boylin writes that:

“”Time to change Wales” are doing amazing things and I am proud to say that I wear their end stigma badge everyday and am frequently asked about it. I am so passionate about stamping out stigma and discrimination against mental health that some days it’s literally all I can think about. I guess that’s why I set up my campaign Kim’s Voice, in memory of my late sister who committed suicide in 2009.”

Persons who have been given medical diagnoses have tended to find support from others who share similar experiences and there are instances of specific-issue health movements shaping medical practice and government policy. And it’s inevitably going to be the case that some diagnoses are contested, challenged and/or politicised. Indeed, diagnostic categories can, and often are, resisted or disputed.

Whether you happen to agree with Kate Swaffer, ironically, is personal to you, but it’s hard to deny that that poem throws up some important questions about identity and the way others perceive you.

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