G8 summit

My research survey on perceptions and image of dementia following the G8 dementia summit

Shibley Rahman 0 Comments

This study can only take place subject to ethical approval from a local COREC. Whilst there is no wish to collect data apart from anonymously, and whilst we will ensure governance of the study for data collection, information given to participants, and whilst we will seek permission to take part (and consent), it’s imperative that a senior investigator on the team (not me) is accountable for the findings. This will be essential if we are later to publish any findings publicly in abstract form or beyond.

I am intrigued about personal reactions to the #G8dementia summit, regarding some perceptions and the image of dementia, and whether the summit addressed any of that.

I’m also interested in seeing whether the summit had a differential effect on those persons living with dementia, and those without (including carers).

There are 28 questions.

Some invite open-ended answers.

There’ll therefore be three groups:

Group A    Persons living with dementia

Group B   Carers

Group C   Not groups A or B

I’ll make three links to these 3 surveys available in time.

I’d be interested in any changes to the questions, or any additions to this list of questions. I will be also collecting very basic demographic data in my surveys. Please use the comments section below this post.

THE SURVEY

This survey is about your perceptions and image of the G8 Dementia Summit which took place in December 2013.

This survey is completely anonymous.

I’d be very grateful if you could answer as best as you can.

The questions have no right/wrong answers.

The survey is in three sections: Part A, B and C.

Thanks!

PART A

Questions 1 – 19

1. Did you see any of the news coverage on the television about the #G8dementia Conference last year?

Yes

No

2. Did you hear any of the news coverage on the radio about the #G8dementia Conference last year?

Yes

No

3. Did you read any of the news coverage on the internet about the #G8dementia Conference last year? This could include any references to the event in the social media, such as Facebook or Twitter.

Yes

No

4. Were you aware of a potential significance of dementia in the future?

Yes

No

5. Do you consider the response against dementia to be a ‘fight’?

Yes

No

6. Do you consider the numbers of people to be living with dementia to be a ‘explosion’ in the near future?

Yes

No

7. Do you consider yourself to be ‘shocked’ by dementia?

Yes

No

8. a) Do you think it’s right to compare dementia to HIV/AIDS?

Yes

No

Not sure

b) Please provide further details, particularly if you were unable to produce a clear ‘yes’ or ‘no’ answer.

[open ended]

9. a) Do you think it’s right to compare dementia to cancer?

Yes

No

Not sure

b) Please provide further details, particularly if you were unable to produce a clear ‘yes’ or ‘no’ answer.

[open ended]

10. a) Do you consider the response against dementia to be a ‘war’?

Yes

No

Not sure

b) Please provide further details, particularly if you were unable to produce a clear ‘yes’ or ‘no’ answer.

[open ended]

11. a) Do you consider the response against dementia to be a ‘flood’, or something against which ‘the tide must be turned’?

Yes

No

Not sure

b) Please provide further details, particularly if you were unable to produce a clear ‘yes’ or ‘no’ answer.

[open ended]

12. Did the #G8dementia summit evoke in you a feeling of being ‘fearful’ about dementia?

Yes

No

13. Did the #G8dementia summit evoke in you a feeling of being ‘excited’ about social care for dementia?

Yes

No

14. Did the #G8dementia summit evoke in you a feeling of being ‘excited’ about the possibility of a breakthrough in a cure for dementia?

Yes

No

15. Did the #G8dementia leave you clearer about the relationship between Alzheimer’s disease and dementia?

Yes

No

16. a) The #G8dementia sought to improve research and a lot of this focussed on ‘personalised medicine’. Did you feel this was explained to you so that you understand it better following the G8?”

Yes

No

b) Please elaborate if you wish.

[open ended]

17. The research community is absolutely clear about the distinction between normal ageing and disease: agree or disagree?

Yes

No

18. Do you feel that #G8dementia addressed the notion that people do not always have the right knowledge and information to manage their condition?

Yes

No

19. Do you feel that #G8dementia promoted ‘living well with dementia’, for example through health innovations?

Yes

No

PART B

Question 20

20. How well do you think the #G8dementia Conference did in addressing the needs of the following groups of the following people?

[Answer from 0 (not at all) to 5 (completely)]

Researchers
Pharma Industry
Persons with dementia
Carers of persons with dementia
Journalists and the media
Politicians
Big charities
Small charities

PART C

Questions 21 – 28

21. What do you believe the #G8dementia summit set out to achieve? Did the organisers achieve in their aims?

[open ended]

22. Do you have any concerns about the way the #G8dementia summit was conducted?

[open ended]

23. What do you expect the #G8dementia summit, in fact, will achieve ultimately?

[open ended]

24. Do you think the #G8dementia helped decrease the stigma which has been associated with dementia?

[open ended]

25. Do you feel the public is generally united in their perceptions of dementia, or do you there exists a diverse range of different perceptions?

[open ended]

26. Do you think negative perceptions of perception exist by members of the public? Why or why not?

[open ended]

27. Are there any positive perceptions of perception by members of the public?

[open ended]

28. Finally, do you have any views about what the aim or purpose of the #G8dementia summit was? Do you know how it was instigated, and by whom?

[open ended]

Does it matter the public was completely misled about the real motives of the G8 dementia summit?

Shibley Rahman 0 Comments

dementia brain

You can argue that the general public were not in fact misled over anything.

The Department of Health had a live stream for the entire day, and the communique and declaration were made available at the end of the day.

It can be argued that the scale of the issue of prevalence of cases of dementia is significant. The media, however, did such a fantastic job in using words such as ‘time bomb’ in scaring the public across all media outlets that Prof Alistair Burns was put in a difficult position as to why dementia policy had appeared to ‘fail’. Burns explained with immaculate civility that the prevalence of dementia had appeared to be falling in recent years to a quiet adversarial but polite Emily Maitlis.

The spectacle of the G8 dementia was though a deception of the highest order. The emotions you were undoubtedly supposed to feel were that it was your fault that you hadn’t realised that dementia was a significant public policy issue.

One lie led to another unfortunately. There are at least two hundred different types of dementia. Some are completely reversible. Some are easier to treat than others. Therefore it was completely meaningless to talk of a single cure for dementia by 2025. Some senior medic should have stopped these health ministers including Jeremy Hunt making a fool of themselves.

They did not even aspire to promote good care primarily; they did not pledge monies in this direction; they gave a firm commitment to disseminate examples of good care.

There is no doubt that much more can be done in basic research to do with how Alzheimer’s disease comes about, and to examine why after fifteen years there is no consistent narrative about their lack of the slowing of disease progression.

What is though to me still unfathomable is why it has not been reported what this ‘open data’ agenda is about. It is about the sharing of clinical “big data”, including DNA genomics, across jurisdictions for the development of personalised medicine.

Innovations for wellbeing might be profitable, but nothing compared to this new project of Big Pharma. And there isn’t a single thing about it in the media. How did the G8 choreograph with such synchrony such a united response all of a sudden? It’s because it’s known that big data and personalised medicine are “the next big thing” in profitability for Big Data. And crucially the other approaches have failed.

You cannot help but feel physically sick at the outcome of this unique opportunity. It’s not accidental there was hardly a discussion of the caring shortfalls in any jurisdiction. The worst thing about this deception is that the public don’t even know that they have been deceived. As long as they donate money voluntarily for ‘research’ and/or participate in ‘dementia friends’, and so long charities can deliver in return some people contributing to the ‘big data’ sample, everyone’s a winner.

The sheer terror helps.

Everyone’s a winner.

Except the person with dementia.

The #G8Dementia Summit: a lack of cure for dementia, and tough on the causes of the lack of cure

Shibley Rahman 3 Comments

The setting for today’s #G8Dementia Summit was in Lancaster House, London.

setting G8 dementia wellbeing blog

Many thanks to Beth Britton, Ambassador for Alzheimer’s BRACE and campaigner, Anna Hepburn at the Department of Health, and Dr Peter Gordon, Consultant and expert in dementia, for helping understand, with the excellent livestream from the Department of Health, what challenges might be in store for global dementia policy in the near future.

My account is @dementia_2014

The final G8 Summit Communique is here.

The G8 Summit Declaration is here.

There’s a bit of a problem with global dementia policy.

The patients, carers, families, businesses, corporate investors, charities, media, academics (including researchers) politicians, all appear to have different opinions, depending on who you speak to.

Peter Dunlop, a man with dementia of Alzheimer type, received a standing ovation after his speech. He had explained his reactions on receiving a diagnosis, and how has tried to continue enjoying life. He had been a Consultant Obstetrician and Gynaecologist.

The people with dementia who appeared did indeed remind the audience, including Big Pharma, why they were there at all.

And that there was more to life than medications:

And this was sort-of touched on even by the Prime Minister:

And personhood was not completely lost on David Cameron MP:

And this was indeed music to the ears of people like me, and countless of persons with dementia, their carers, friends and relatives, for example:

And the carers were listening carefully too..!

There was some concern aired that the volunteers and charities would been seen as a valid alternative for a properly supported health and social care system. Whilst everyone agreed that ‘dementia friends’ and ‘dementia friendly communities’ were worthy causes, everyone also agreed that these should not replace actual care.

Part of the aim of today was to foster of culture of diminishing stigma. And yet the media had been full of words such as ‘cruel disease’, ‘robs you of your mind’, ‘horrific’. So the politicians seem conflicted between this utter armageddon and wishing to destigmatise dementia, with generally pitiful results.

Some of the language in the last 24 hours has indeed been truly diabolical. I took a break to watch the main news item on the BBC, and Fergus Walsh was heading up the main item on dementia with extremely terrifying language.

But the Summit kept on reverting to the ‘real world’, pretty regularly though.

A pervasive theme, brought up by many health ministers and other interested parties, was how dementia carers themselves needed supported. Dr Margaret Chan even later in the day spoke about a new online resource for carers, which would be fantastic.

An aspect of why this situation had arisen was not really explained. Prof Martin Rossor, Honorary Consultant for the Dementia and Cognitive Disorders unit at Queen Square, described the dementia issue as ‘a wicked problem’ on the BBC “You and Yours”. However, Dr Margaret Chan from WHO was much more blunt.

Big Pharma had failed to ‘come up with the goods’, despite decades of trying.

But few speakers were in any doubt about the societal impact of dementia, though much of the media resorted to scare tactics as usual in their messaging.

The speakers on the whole did not wish to discuss how care for people could be reconfigured. The disconnect between the health and social care systems is clearly  a concern in English policy. And indeed this was even raised.

All was not lost regarding wellbeing.

Hazel Blears, Labour MP for Salford, explained how her mother was living with dementia, so it was vital that policy should do everything it could do to help people live with dementia.

I met the Salford Institute for Dementia, a brand new Twitter account, for the first time this afternoon, which was in fact one of the highlights of my day.

Although not pole position compared to ‘cures’ and ‘disease modifying drugs’, it was clear that the #G8summit were keen to support assistive technology, telecare and telemedicine. This could be in part due to the generous research grants from various jurisdictions for innovation, or it could be a genuine drive to improve the wellbeing of persons living with dementia.

At just before lunchtime, I suddenly “twigged it”.

I must admit I was angry at myself for having been “slow on the uptake”.

As it was, the discussion appeared to swing periodically between two ends of an extreme during the course of the day. At one end, the discussion was about ‘big data’ and ‘open data’ sharing.

Vivienne Parry , then said how she preferred the term ‘safe data’ to ‘open data’, but Twitter was at that point awash with queries as to whether a rose by any other name would smell as sweet?

People conceded the need for persons and patients voluntarily to contribute to these data sets, and for international organisations such as WHO to attempt to formulate standardised harmonised templates for these data. At the other end, people were very keen to talk about genetic information, presumably DNA, being the subject of DNA genomics data scrutiny at a personal level.

Also, the discussion itself swung from personal tales (such as Beth Britton’s) to a discussion of looking at societal information as to what sorts of data clusters might show ‘susceptibility’ in their genetic information decades before the onset of clinical dementia. Big data, like 3D printers, has been identified as ‘the next big thing’ by corporates, and it’s no wonder really that big data should of interest to big Pharma corporates.

Having failed spectacularly to have produced a cure or disease-modifying drugs across a number of decades, Pharma are left with two avenues. One is that they look at the individual response to therapy of drugs at a single case level using radio-active binding studies (radio-ligand binding studies), and monitor any slowing of build-up of abnormal protein in the brain as a response to treatment. How much this actually benefits the patient is another thing.

Or Big Pharma can build up huge databases across a number of continents with patient data.  Researchers consider this to be in the public interest, but patients are clearly concerned about the data privacy implications.

Here, it was clear that Big Pharma could form powerful allies with the charities (which also acted as patient groups):

And of course this agenda was very much helped by Sir Mark Walport being so enthusiastic about data sharing. Having been at the Wellcome Trust, his views on data sharing were already well known though.

If it were that regulators could allow  data sharing more easily, justified presumably on public policy grounds such that freedom of information was more important than data protection according to the legal doctrine of proportionality, this plan could then considerably less risky for corporate investors wishing to invest in Big Pharma.

Andrea Ponti from JP Morgan gave this extremely interesting perspective, which is interesting given the well known phenomena of ‘corporate capture’ of health policy, and ‘rent seeking behaviours’ of corporates.

It has been argued that waiting for valid consent from the patients would take too long, so presumed consent is more of a practical option. However, this ethically is an extremely tricky argument. The Pharma representatives were very keen to emphasise the ‘free flow’ of data, and the need to ‘harmonise regulation'; but they will be aware that this will requiring relaxing of the laws of more than one country.

And so, during the course of the day, the agenda of Big Pharma became clear. They intended to be tough on the lack of cure for dementia, and tough on the causes of that cure. Some might say, that, as certain anti-dementia drugs come to the end of their patents (and evergreening is not an option), they have suddenly converged on this idea to tackle dementia, as it is a source of profitability to enhance shareholder dividend. They now need new business models to make it succeed (and various charities and research programmes which benefit from this corporate citizenry might be able to make it work too.)

But during the course of the day those ‘pesky’ tweets about person-centred care kept on coming…

Some of the tales were truly heart-breaking.

But I was happy because Beth was happy at the reception of her film. She is so utterly passionate, and totally authentic, about the importance of her father who had dementia. It was a privilege for us to see how well the film had been received by all there at the #G8summit.

And those pesky tweets kept on coming…!

But indeed there was a lot to be positive about, as research monies if well spent could provide a cure or disease-modifying drugs. Big Pharma and the researchers know that they are not only trying to tackle the big one, the dementia of the Alzheimer type, but also other types such as the vascular dementias, frontotemporal dementias and diffuse Lewy body disease.

Beth’s input today was invaluable.

And Dr Peter Gordon loved it!

But the best comment of the day must certainly go to Dr Margaret Chan, a V sign to those obsessed with Big Data spreadsheets and molecular biologists looking at their Petri dishes:

In summary…

It smelt like a corporate agenda.

It looked like a corporate agenda.

It sounded like a corporate agenda.

And guess what?

All the ingredients of ‘corporate capture’ were in attendance: big data, personalised medicine, genomics, data sharing. They’d have managed a full house had the world leaders found a use for 3D printers in all of this.

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