G8 dementia 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]

In “Big Dementia”, who cares about dementia carers?

Shibley Rahman 0 Comments

Without the work of unpaid carers, the formal care system would be likely to collapse. Some feel that the State gets a “very good deal” out of this current system. The ongoing support from unpaid carers will be a particular issue for the care system in the future, as changing demographic patterns, shifts in family composition, labour force participation and increased geographical mobility will affect the availability of the unpaid care workforce. There are also significant issues emerging in care work.

It can be argued that some carers in dementia, whether unpaid carers or paid care workers, are perceived rather unfairly by society, and this is a matter of real national concern. The issue of researching personalised medicines, and pooling clinical drug trial data, across a number of different jurisdictions, is a curiously international phenomena. It feeds into the ‘big is better’ narrative, which is of course a key aspect of why large multinational companies like ‘Big Data’. But converting our response to dementia to a solution for Big Pharma is not solely the answer. The answer is not simply ‘Big Dementia’, much as that might be attractive for the corporates. It is just as crucial to consider who cares about dementia carers. The two are not necessarily mutually exclusive of course. In an ideal world, we should like to offer the best care for people with dementia, as well as effective symptomatic treatment as well as a cure. However, it’d be a disaster if we could hold our hands up, and say that we could in all reality offer neither. As the international economies recover after the global financial crash, caused by the effects of poor global regulation of securitised mortgage products, it might seem fitting that the international landscape can be tweaked to make dementia profitable for Big Pharma. However, it is clear that our own national parliament, in the recent ‘dementia care and services’ debate on 7 January 2014, wishes to have a frank and sincere debate about who cares for the carers. As a society, this is dependent on economics within our control. If people need to talk about about the ‘cost’ of dementia relentlessly, there might be an equal and opposite need to talk about the value of carers; and this needs to be a national debate.

The usual tired mantra from politicians would of course be trotted out, particularly from those of a certain political inclination, that as the economy improves our living standards will improve. But it has been a concern of all main political parties that living standards for the many are not expected to rise as the economy recovers. In this jurisdiction, there’s a particular phenomenon of how the very wealthy seem to have been relatively immune from the global financial crash. This ‘cost of living crisis’ has been partly attributed to big corporates colluding legally to maintain prices to promote shareholder dividend rather than customer value. In England, the Health and Social Care Act (2012) was legislated by the current government to promote a quasi-market in the NHS in England. The aim was to introduce competition, bolster an economic market regulator, and to produce a mechanism for fast managed decline of ‘failing’ NHS Foundation Trusts. Clinical commissioning groups (CCGs) and health and wellbeing boards were also introduced new parts of the NHS in England. CCGs plan and buy local health services, while health and wellbeing boards influence the local decisions that shape health, public health and social care. In this new political and socio-economic landscape, it has been particularly striking, but encouraging, that the shared vision of the “Dementia Action Alliance” is of an England and Wales where the health and wellbeing of carer of a person with dementia are of equal priority to those of the person for whom they care. Ideally, for competition to thrive, it should not be in the hands of a few corporates and corporate-like charities, but all stakeholders should be given a fair slice of the action.

The wellbeing of carers of dementia in England is related to both its national economy and law, and this is something which is not within the powers of the G8 arena. In keeping with previous Conservative governments, George Osborne has warned that “self-defeating” increases to the minimum wage could “cost jobs”, and John Major, the Prime Minister 1990-7 had argued strongly the dangers of the national minimum wage. Many of the same arguments are likely to resurface as the UK Labour Party will undoubtedly raise the importance of the “living wage”, prior to the general election to be held on May 7th 2015. Cabinet ministers including Business Secretary Vince Cable and Work and Pensions Secretary Iain Duncan Smith are reportedly pressing, currently, for an “above-inflation rise” of 50p or more. Mr Osborne said he too wanted to see the £6.31 hourly minimum wage rise, but he said it should be left to the Low Pay Commission to set the appropriate level.

As Norman Lamb said in the parliamentary debate the other day, “We ask carers to do some of the most difficult work that one can ever imagine but the rewards and the training and support they get is minimal.”

An emerging political consensus has promisingly emerged that “we can never get good care on the back of exploiting very low-paid workers”, as Lamb put it. It turns out that carers are currently paid the national minimum wage if they are lucky. That is, of course, a breach of the minimum wage legislation. According to an authoritative study Dr Shereen Hussein, of King’s College London, estimates that there are between 150,000 and 220,000 care workers in this position. And this is using conservative assumptions – the real number could be higher. The flouting of national minimum wage has, however, become alarmingly widespread.  There are a variety of employment practices that result in the minimum wage being circumvented, the most common of which is when councils sign contracts with private providers who recruit staff to provide short slivers of care in the home. A quarter of an hour can be all that a care worker gets to wash, change, feed and talk to someone with dementia. Dignity for the client is often the first casualty: a variety of groups representing the vulnerable, as well as some of the more scrupulous employers, fear that rushed care contracted by the minute often means inadequate care. Previous findings suggest almost half of councils still set 15 minutes as their minimum time slot.

Furthermore, many paid care workers are on zero-hours contracts. Unison’s ethical care charter  aims to put an end to poor pay and working conditions in home care services. Under the charter, for example, Islington council has agreed to implement the charter’s main principles of getting rid of zero hour contracts, ensuring travel time is counted in employees’ paid hours and implementing the London living wage, as well as setting up occupational sickness schemes. Islington, alongside Southwark council, has been an early adopter of the recommendations put forward by Unison in the their report into home care. Published in 2012, the report found that good carers were being lost to “easier jobs that pay more, like in supermarkets” after finding themselves unable to support their family on an inadequate and unreliable salary.

Many paid care workers also do not get paid for travelling between the appointments they undertake, but clearly care workers must be paid when they are travelling from one home to another. Furthermore it is common for remuneration systems to pay only pay per minute actually spent with clients, not the travel time between them. Dozens of these work-related journeys could be made each week as it’s a core part of the job. Not being paid for this time means those who care don’t get paid for a full day’s work.

It is also important for councils commissioning care work to be absolutely clear with those they contract with that they expect total compliance with the law. If a council is commissioning in a way which almost becomes complicit in a breach of the law, that is completely unacceptable. On the other hand, NHS Wiltshire has commissioned an “outcomes based continuing healthcare service” designed to improve quality, reduce cost and link up with social care – but which completely restricts patient choice. The “Help to Live at Home”  service has been commissioned jointly with Wiltshire Council. Contracts for the £23m service. The provider a patient receives will depend on where in the county they live. All health and social care services will be delivered by that provider and payment will depend on achieving a set of agreed outcomes.

There is a big difference between “care workers” and “unpaid carers”. A phenomenon worth keeping an eye on is that of “family caregiving” which has been on an upward trend in various jurisdictions, in part due to the economic recession. Some families lack the financial capabilities to pay professional caregivers. In fact, a huge group of carers comprise the “unsalaried family caregivers”. Family caregivers of people with dementia, often called the “invisible second patients”, are critical for people living with dementia. The effects of being a family caregiver, can be both positive and negative, with high rates of burden and psychological morbidity as well as social isolation, physical ill-health, and financial hardship. Indeed, it is mooted that comprehensive care of a person with dementia can include building a partnership between all health professionals and family caregivers. Many family caregivers of people with dementia might also employed, of whom many have reported that they missed work; a proportion may have even that turned down promotion opportunities or given up work to attend to caregiving responsibilities. There is furthermore no doubt that the benefit system is confusing, and it had been hoped that universal credit would be a method of simplying that. If you care for someone with dementia, you are normally advised to check that you are both getting all the benefits and tax credits you are entitled to. For example, you may be able to claim Personal Independence Payment or Attendance Allowance for the person with dementia, and Carer’s Allowance for the carer. You, or the person you look after, may be entitled to a discount on your council tax. Again, the situation can be complicated, and many people get simply put off from applying for the benefits for which they could be entitled due to sheer complexity and/or lack of guidance.

So, how will we eventually know when carers are being looked after? We will hear that carers of people with dementia are confident that their own health and wellbeing needs and requirements are recognised and supported, so that no carer feels alone, and are given regular breaks. This is in keeping with how local and national guidance for working time should be implemented anyway. Carers of people with dementia are also recognised as essential partners in care, assuming an approach which could be best called “coproduction”. Furthermore, carers of people with dementia would also have access to expertise in dementia care for information, advice, support and co-ordination of care. The “Dementia Action Alliance” has been the coming together of over 800 organisations to deliver the National Dementia Declaration; a common set of seven outcomes informed by people with dementia and their family carers. The Declaration provides an ambitious and achievable vision of how people with dementia and their families can be supported by society to live well with the condition

It would be incredibly valuable to have carers have a voice on CCGs and health and wellbeing boards, especially since commissioners are supposed to be promoting wellbeing pursuant to the Care Bill currently being discussed in the House of Commons and the House of Lords. The demands of caring for someone with dementia are great and many carers say they feel  totally unsupported. How to include unpaid care workers in this commissioning  debate is undoubtedly a difficult issue, but one which simply cannot be ultimately parked for convenience.

“Big Dementia” may not provide all of the answer, unless care is combined with cure.

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 G8 dementia Summit: the comparison with the botched NHS reforms is striking

Shibley Rahman 0 Comments

frail hands

This week,  to great fanfare, the G8 hosted its summit on dementia. Indeed, that the G8 were discussing a single condition was indeed remarkable. That they were joining forces to consider working together on this inspired hope.

What was unforgiveable was the sheer volume of myths about dementia which were pedalled though by the media. Prof Alistair Burns to his credit gave an answer in an interview by Emily Maitlis explaining how dementia prevalence rates appeared to be falling, in response to the backdrop set up by media memes such as ‘timebomb’. Many were left extremely angry on account of the lack of balance, completely distorting the picture such that any idea of someone ‘living well with dementia’ became a rarity.

What was not expected was a sanitisation of advanced dementia, but even there there was not a discussion of end of life care. In fact, there generally was no discussion of a minimum safe level of health and social care in any of the countries. The media pushed hard ‘a cure for dementia by 2025′, which major Alzheimer’s societies had signed up to. The claim is complete and utter rubbish, as there are over a hundred different types of dementia; the public were unashamedly being sold a pup.

The English health system, the National Health Service, has an obsession with ‘efficiency’. So much so it will happily fork out to pay one for one junior doctor covering all the general medical hospital every night for a week, and that junior doctor doesn’t stop all night. Sometimes that junior doctor will be expected to cover the wards too. Cover by nurses can be equally ‘lean’ during the weekends too.

The obsession with measuring ‘I want good care’ and regulation is akin to a teacher who has forgotten to teach but can set regular assessments. When the system is set up to run everything with much less doing a lot more, it’s possible something has got to give. And this is of course precisely what happened at Mid Staffs.

And yet out of the blue there appeared a 493 page document ultimately called the Health and Social Care Act (2012) which had nothing to do with this most important point about patient safety. There is not even a single clause to do with patient safety (unless  you include the clause abolishing the National Patient Safety Agency). The medical Royal Colleges were not involved. The BMA was not involved. And yet the Act of parliament, outsourcing and privatising the NHS, is just what the Corporate ordered.

This is what is known in the (business) trade as an ‘opportunity cost’ where money and efforts could have been better spent elsewhere. In this particular case, despite a promise of ‘no top reorganisation’, there was a £3bn reorganisation.

When attending a medical ward, you have to go to the sick patient first. You have to prioritise. If there had to be an unannounced reform of the NHS, outsourcing it was not the priority. The latest survey even shows that the public don’t especially like private providers doing NHS work.

Likewise, the priority for dementia care should have been investment in the social capital of caring. Too often carers are embattled with the biological, financial and legal considerations of caring. Many carers are themselves on zero-hours contracts. The G8 dementia summit was a great opportunity to confront that.

It didn’t. Instead, with alarming synchrony, the G8 leaders came together to sing off the corporate script. Vivienne Parry with effortless ease choreographed a seemingly spontaneous discussion about well rehearsed arguments for the need for ‘big data’, global data sharing, genomics, and personalised medicine, for much of the day. Prevention was of course discussed, but this is of course intimately wound up with the collection of information about the person, and the use of that other pet subject, biomarkers.

And more research is not better research, in the same way bigger information is not better information. If research monies are diverted into data analysis, genomics and personalised medicine, these monies will be diverted away from research into caring for example. One wonders whither the ‘cure for dementia’ will actually go, unless they have another fifteen years to look at slowing the progression of Alzheimer’s disease. The evidence that cholinesterase inhibitors, a class of drugs used to treat symptomatically memory and attention problems in Alzheimer’s disease, has a beneficial effect on slowing disease progression is as low as it possibly can be after nearly 20 years of expensive research in this area.

The G8 summit, like the Health and Social Care Act, was ‘corporate capture’ at its best, so if you’re angry, well done, that is the appropriate emotional reaction!  If you were wondering if you’d accidentally missed the discussion of carers and how they would be involved until 2025, don’t worry, you hadn’t. They weren’t there.

The G8: when dementia care got personal (well, molecular actually)

Shibley Rahman 0 Comments

Big Data picture

At best, the donation of patients’ DNA for free globally in #G8dementia to enhance Pharma shareholder dividend can be sold as ‘coproduction’. It’s easy to underestimate, though, the significance of the G8 summit. It was overwhelming about the ‘magic bullet’, not the complexities of care. It made great promotional copy though for some.

It was not as such health ministers from the world’s most powerful countries coming together to talk about dementia. It was a targeted strike designed to decrease the democratic deficit which could arise between Big Pharma and the public.

Here it’s important to remember what #G8dementia was not about. It was not about what is a safe level of health and social dementia care is around the world. It had a specific aim of introducing the need for a global collaboration in big data and personalised medicine. Researchers whose funding depends on the wealth of Big Pharma also were needed to sing from the same hymn sheet.

For such a cultural change to take effect into this line of thinking, a high profile publicity stunt was needed. Certain politicians and certain charities were clearly big winners. However, with this, it was deemed necessary from somewhere to introduce an element of ‘crisis’ and ‘panic’, hence the terrifying headlines which served only to introduce a further layer of stigma into the dementia debate.

And yet it is crucial to remember what was actually discussed in #G8dementia.

In a way, the big data and personalised medicine agenda represents the molecular version of ‘person-centred care’, and these are academic and practitioners “circles to be squared”, or whatever.

Big data and personalised medicine have been corporate buzz terms for quite some time, but while it’s widely known there are correlations between the two, many are still struggling with how to effectively leverage mass amounts of data in order to improve efficiencies, reduce costs, and advance patient-centric treatments.

Medicine’s new mantra is “the right drug for the right patient at the right time.”  In other words, medical treatments are gradually shifting from a “one size fits all” approach to a more personalized one, so that patients can be matched to the best therapy based on their genetic makeup and other predictive factors.  This enables doctors to avoid prescribing a medication that is unlikely to be effective or that might cause serious side effects in certain patients.

Personalised drug therapy in its most sophisticated form uses biological indicators, or “biomarkers” – such as variants of DNA sequences, the levels of certain enzymes, or the presence or absence of drug receptors – as an indicator of how patients should be treated and to estimate the likelihood that the intervention will be effective or elicit dangerous side effects. In the case of Alzheimer’s disease, the hunt for a marker in the ‘brain fluid’ (cerebrospinal fluid) has been quite unimpressive. The hunt for those subtle changes in volumes or abnormal protein levels has not been that great. The information about DNA sequences in Alzheimer’s Disease (more correctly a syndrome) is confusing, to say the least. And there at least 100 different types of dementia apart from Alzheimer’s Disease (making the quest for a single cure for dementia even more banal, but a great soundbite for politicians who won’t be in office long anyway.)

With healthcare costs in the U.S. increasing steadily over the last 20 years to 17% of GDP, and similar scaremongering about ‘sustainability’ from economically illiterate people on this side of the Atlantic too, overall moronic healthcare “experts” are looking for every path possible for “efficiency”, “productivity” and “reform”. Many believe that a long-term source of savings could be the use of big data in healthcare; in fact, the McKinsey Global Institute estimates that applying big data strategies to better inform decision making in U.S. healthcare could generate up to $100 billion in value annually.

Significant advancements in personalised medicine, which includes genomics, is making it easier for practitioners to tailor medical treatments and preventive strategies to the characteristics of each patient — advancements that supporters say will improve care and reduce costs. Private markets have long capitalised on fear, and dementia represents a nirvana for private healthcare. It is potentially a huge ‘market’ for drugs. Yet progress is being slowed by a number of factors, including the limited sharing of patient information. This is why there was so much shouting about the need for relaxed regulation at #G8dementia. And yet ultimately, these stakeholders, important though they are, know they can go nowhere without the license from the public. Patient groups and charities represent ‘farms’ for such projects in medicine, as they do for law firms.

Greater sharing, it is argued, would allow medical institutions that are creating patient databases — some with genomic information — to expand the size of the patient pool, thus making it more likely to identify and treat rare conditions. Such discussions necessarily avoid the contentious issue of who actually owns personal DNA information. What’s more important? That patient’s privacy, or the public interest?  Data sharing, it is argued, would also allow patients to personally store and share their data with different practitioners. The day that everyone will have every detail about their personal health on their smartphones isn’t that far off, some hope.

The other component of the data-accessibility issue is how medical researchers should go about building massive databases of patient records. The ultimate application is a big-data program that could analyse a patient’s data against similar patients and generate a course of action for the physician. This is why the #G8dementia want to get seriously ‘global’ about this project.

Data can help practitioners diagnose patients more accurately and quickly, and identify risk factors much earlier.

Edward Abrahams, president of the Personalized Medicine Coalition, has said,

“The tricky part is that the public wants control over information, but as patients they may think differently”.

The creation of this value lies in collecting, combining, and analysing clinical data, claims data, and pharmaceutical R&D data to be able to assess and predict the most efficacious treatment for an individual patient.  This might be possible through ‘big data’ and ‘personalised medicine’ in a number of key areas.

Clinical trials are of course necessary for every drug to get to market, and the gold standard is currently a randomised clinical trial backed up by a published paper. Big data approaches are complementary to traditional clinical trials because they provide the ability to analyse population variability and to conduct analytics in real time. I

Secondly, the ability to manage, integrate, and link data across R&D stages in pharma might enable comprehensive data search and mining that identify better leads, related applications, and potential safety issues. The sequence alone is much more useful as it is correlated with phenotypes and other types of data. This has naturally affected the way companies think about data storage and structure, with cloud solutions becoming more popular. The two leaders in next-gen sequencing technologies, Illumina now offers cloud solutions for data storage and analysis to meet this growing need. Hence it was ‘name checked’ in #G8dementia.

Thirdly once R&D data and clinical trial data is indexed for big data analysis, the third piece of the big data puzzle into routine clinical practice. Ultimately personalised medicine is about this correlation of diagnostics and outcomes, but tailored to each and every patient.

While big data has already been used successfully in consumer markets, challenges remain to its implementation in healthcare. The primary challenge in moving to big data approaches is simply the vast amount of data in existing systems that currently don’t “talk” to one another and have data that exists in different file types. Hence there is considerable talk about ‘harmonisation’ of data at the #G8dementia conference. The second challenge for data in the clinical space is how to store and share these large amounts of data while maintaining standards for patient privacy.  Achieving better outcomes at lower costs (aka ‘doing more for less’) has become the exhausted strapline for the NHS recently, and big data  may seem particular attractive to NHS England in their thirst for ‘efficiency savings’.

However, bridging the “democratic deficit” remains THE fundamental problem. If you though the #G8dementia was like an international corporate trade fair, you may not have been invited to other similar events.

The 16th European Health Forum brought together 550 delegates from 45 countries, to take the pulse of Europe’s healthcare systems five years after the 2008 financial crisis and consider what needs to be done now to build, ‘Resilient and Innovative Health Systems for Europe. The Big Data workshop was organised by EAPM and sponsored by EFPIA, Pfizer, IBM, Vital Transformation, and the Lithuanian Health Forum.

There, key issues to do with ownership, security and trust must be addressed, believed Amelia Andersdotter, MEP: “We have some serious challenges for politicians and industry to preserve citizens’ confidence.”

Vivienne Parry in #G8dementia had wanted to talk about ‘safe’ data not ‘open’ data. And where did this idea come from?

Ernst Hafen, Institute of Molecular Systems Biology, ETH Zurich, has said, “We all have the same amount of health data.” Applying big data to personalised medicine, “Only works if we are comfortable with [our data] being used. We have to provide a safe and secure place to store it, like a bank,” also accoding Hafen. Tim Kelsey used exactly the same language of banks at a recent event on innovations in London Olympia.

If you think you’ve had enough of PFI, you ain’t seen nothing yet. Public-private partnerships open the way for health data to be shared, and so improve research and translation, according Barbara Kerstiens, Head of Public Sector Health, DG Research, European Commission. The aim was, “To get stakeholders working together on data-sharing and access, and ensure there is a participant-centred approach,” she said.

And how will the law react? Case law is an important means by which we know what is patentable at the European Patent Office (EPO). However, sometimes the EPO’s view of what is patentable in an area changes before the case law does. This can sometimes be detected when Examiners start raising objections they would not have previously done. Meetings between the EPO and the epi (the professional institute for EPO attorneys) are very useful forums for obtaining ‘inside information’ about the EPO’s thinking which is not yet apparent from the case law. The June 2012 issue of epi Information provides a report of such a meeting held on 10 November 2011 between the EPO and the biotech committee of the epi.

Discussion item 8 was reported as follows:

‘8. Inventions in the area of pharmacogenomics
This concerns cases which are based on a genetic marker to treat a disease, for example methylation profiles. It can involve a new patient group defined by an SNP. The EPO said that often the claims can lack novelty, as one patient will have inevitably been treated with the SNP, even if the art does not explicitly say so.’

The EPO’s comments seem to indicate that it is about to change the way it assesses novelty when looking at medical use claims that refer to treatment of a specific patient group.

A “SNP” is a form of genetic marker which varies between individuals. The idea behind the relatively new field of pharmacogenomics is that, if you know which SNP variants a patient possesses, you can personalise the drugs given to a patient in accordance with his genetic makeup. It is now recognised that the genetic makeup of an individual can be very influential as to whether he responds to a drug, and so one application of pharmacogenomics is to only give those drugs to patients who will respond to them.

Presently, suitable biomarkers for personalised medicine are proving difficult to find. So it seems that the sector is going to require a lot of investment. There’s where #G8dementia came in handy. But in investors in biotech do like to see that strong patent protection is available in the relevant sector; hence the upbeat rosy approach from the speaker from JP Morgan at #G8dementia who framed the debate in terms of risks and returns.

Personalised medicines, and in fact diagnostics in general, has been thrown into uncertainty in the US after the Supreme Court’s decision in Mayo v Prometheus which found that a claim referring to steps that determined the level of a drug in a patient was directed to a law of nature and was thus not patentable. It would be unfortunate for personalised medicines to be dealt a further blow by the EPO, making the test for novelty stricter in this area.

So there may be trouble ahead.

The #G8dementia was merely the big players, with the help of this Pharma-friendly community in the UK, dipping their toe in the water. It was really nothing to do with frontline health and social care, and any mention of them was really to make the business case look relevant to society at large.

It was for academics interesting in that it was when person-centred care came ‘up front and personal’. Molecular, really.

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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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Is a new sophisticated brain scan desirable to diagnose dementia?

Shibley Rahman 1 Comment

Amyloid plaques

Wouldn’t it be lovely Prime Minister, David Cameron MP, could announce a breakthrough which nails the problem of the diagnosis of Alzheimer’s disease?

The definitive diagnosis of dementia of the Alzheimer type (DAT) comes post mortem (though in practice various techniques while the patient is alive can be used to tell whether a patient has a type of dementia).

The full armoury of tests includes thinking tests or cognitive neuropsychology, a sample of the fluid from the spine (cerebrospinal fluid), the clinical history and examination of the patient, brain waves (the EEG), or even (rarely) a brain biopsy; that’s even before considering types of scan, like the ‘CT scan’, the ‘MRI scan’, or ‘functional scan’.

The trick of the clinician, varying with levels of expertise, is to make the diagnosis reliably such that a person living with dementia might be able to ‘access’ appropriate care in the system; and those without dementia aren’t given an incorrect label of ‘dementia’.

DAT is one of the hundreds of causes of dementia (although most of the media use ‘Alzheimer’s Disease’ and dementia unhelpfully synonymously.)

Amyloid build-up and the diagnosis

There has been a popular idea that the build up of a substance called amyloid which builds up in the brain might hold the clue to early diagnosis of Alzheimer’s Disease.

In recent years, the emphasis has swung to ‘timely diagnosis’, with the national clinical lead for dementia, Prof Alistair Burns, emphasising that the diagnosis should be made at a time appropriate for the person himself or herself.

A ‘quick fix’ in a test for DAT seems very attractive, but it’s important to remember that the dementia of the Alzheimer type is only one (but the most common) cause of dementia across all age groups.

How to use the test in a safe way

The way in which this diagnosis could be made has also come under scrutiny.  A method which uses a radioactive label to which at how much label can bind to abnormal amyloid in the brain, to be practical, should not be excessively time-consuming to administer. It also should not be prohibitively expensive.

Also critically, it should be reliable. In other words, it shouldn’t show up ‘positives’ in otherwise well people, who never go onto develop dementia. A critical problem is that there are many causes of memory loss in older people, including of course depression.

To make things even more complicated, there is a very interesting group of people whose thinking and memory are normal, even late in life, yet their brains are full of amyloid beta plaques that appear to be identical to what’s seen in dementia of the Alzheimer type. How this can occur is an important clinical research question.

Hard plaques made of a protein called amyloid beta are always present in the brain of a person diagnosed with the dementia of the Alzheimer type.  But the simple presence of plaques does not always result in impaired thinking and memory. In other words, the plaques are necessary – but not sufficient – to cause DAT.

Is it the type of amyloid which matters?

Earlier this year a paper was published in the prestigious journal in the US (Esparza TJ, Zhao H, Cirrito JR, Cairns NJ, Bateman RJ, Holtzman DM, Brody DL. (2013) Amyloid-β oligomerization in Alzheimer dementia versus high-pathology controls. Ann Neurol. 73(1):104-19. doi: 10.1002/ana.23748. Epub 2012 Dec 7.)

An important clue may come from still come from a form of amyloid beta, but not necessarily in the form of plaques. Instead, smaller molecules of amyloid beta appear more closely correlated with whether a person develops symptoms of dementia; these are called “amyloid beta oligomers“.

Earlier this year, this group developed a way of measuring  these amyloid beta oligomers in minute quantities, without binding to similar things.

These amyloid beta oligomers were detected in samples of brain from patients with DAT and nondemented patients with amyloid plaque pathology. However, amyloid beta oligomer concentrations in samples from patients with DAT were tightly correlated with amyloid plaque coverage (correlation very high), but this relationship was weaker in those from nondemented patients (correlation very low) despite equivalent amyloid plaque pathology.

The results raise the intriguing hypothesis that the linkage between plaques and oligomers may be a key pathophysiological event underlying DAT.

This test would be clearly potentially profitable for people who have developed this test, and the critical issue is whether if you scan real patients whether the amount of radioactive binding will reliably distinguish between people with dementia and those without.

Would a new brain scan be helpful?

Looking for amyloid in people who might be developing dementia has been a story going on for ages. The Telegraph newspaper reports a “breakthrough” in a scan, but the description is that of plaques (leading to the possibility of people having lots of plaques found on imaging who later never develop dementia):

“The scan was developed by scientists in London. The test involves giving a patient exhibiting signs of dementia a small amount of a radioactive substance, which will allow amyloid plaques to show up in a brain scan.

The presence of the plaques in the brain is one of the main signs of Alzheimer’s, although it does not make the disease inevitable, so doctors using the test would be sure of giving a patient the all-clear only if the plaques were absent.

It is the first time doctors have been able to detect the plaques while a patient is alive.”

The desire ‘to catch Alzheimer’s early’ – and the actual pitfalls

A major issue is going to be which people should be put forward for such an imaging technique; there has been intense scrutiny of whether bedside tests can reliably tell the difference between people who have a ‘mild cognitive deficit’ and those who have dementia.

A political drive, almost in total parallel led by the current UK and US governments, to “screen” older people for minor memory changes could potentially be leading to unnecessary investigation and potentially harmful treatment for what is arguably an inevitable consequence of ageing. There are no drugs that prevent the progression of dementia according to human studies, or are effective in patients with mild cognitive impairment, raising concerns that once patients are labelled with mild cognitive deficits as a “pre-disease” for dementia, they may try untested therapies and run the risk of adverse effects.

The idea itself that there is a “pre-disease” stage before the full-blown course of the dementia of Alzheimer type is itself erroneous, if one actually bothers to look at the published neuroscientific evidence. A mild cognitive impairment (“MCI”) is a clinical diagnosis in which deficits in cognitive function are evident but not of sufficient severity to warrant a diagnosis of dementia (Nelson and O’Connor, 2008).

However, the evidence of progression of MCI (mild cognitive impairment) to DAT is currently weak. This has been much to the frustration of some researchers where it had been hoped for years that this could be used to identify DAT at an early stage. It might be attractive to think that MCI is a preclinical form of dementia of Alzheimer Type, but unfortunately the evidence is not there to back this claim up at present: only approximately 5-10% and most people with MCI will not progress to dementia even after ten years of follow-up (Mitchell and Shiri-Feshki, 2009).

It’s the post-diagnosis support anyway…

Either way, there should still be adequate post-diagnosis support, which is a problem which simply won’t go away.

Therefore, this result of a ‘breakthrough’, for one of the more common causes of dementia, has to be sufficiently exciting for the drug companies to have a ‘return on investment’ who have developed them.

However, in a week which has seen increasing scrutiny as to whether pharmaceutical-based approaches have been a waste of dawn, particular interest will be paid as to whether this is in fact yet another “false dawn”.

Other references

Mitchell, A.J., and Shiri-Feshki, M. (2009) Rate of progression of mild cognitive impairment to dementia -meta-analysis of 41 robust inception cohort studies. Acta Psychiatr Scand, 119(4), pp. 252-65.

Nelson, A.P., and O’Connor, M.G. (2008) Mild cognitive impairment: a neuropsychological perspective, CNS Spectr, 13(1), pp. 56-64.

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The G8 Dementia Summit cannot just be about “Pharma-friendly communities”, but must be about people

Shibley Rahman 3 Comments

A ‘cure for dementia’ would be wonderful.

The phrase is, of course, as meaningless as a ‘cure for cancer’, but equally trips off the tongue for corporate fundraising purposes. Like there are many different forms of cancer, like breast, ovary or bone, there are many different forms of dementia, like Alzheimer’s, frontotemporal or HIV.

It’s clear not everyone is going to be a winner from the G8 Dementia Summit promotional package. The write-ups of the dementia research strategy have included ‘the usual suspects’ from “Pharma-friendly communities”, with a token sop to research for wellbeing.

The G8 Dementia Summit is an extremely good way of promoting dementia as a worthy public health issue. Many passionate campaigners will indeed take to the stage to explain, often in very personal terms, why dementia is an incredibly important issue for them. It has become extraordinarily difficult not to know somebody who, in one way or another, is touched by dementia.

The complex nature of dementia has forced policy makers and national governments to invest the financial resources available in three main areas: first, medical research to find a cure for the disease or at least ways to prevent it; second, pharmacological care; and finally, support for caregivers, such as information, training, psychological assistance, etc. Arguably though, none of the three areas, however, have the ‘real’ person at the centre of their interest.

There is also now way that the media can get away with their marginalising of carers for a ‘cure’. Carers face considerable pressures, as they are forced to understand at shotgun notice the biologicial, personal, legal and financial consequences of the dementia. Apart of anything else, many carers, often employed by large private companies, are paid less than a living wage on a ‘zero-hour contract’. Unsurprisingly, how we prioritise the value of care rather than the dividend of a shareholder in a large pharmaceutical company is an important debate to be had.

The cultural stereotype of dementia across various countries is indeed noteworthy. The picture of dementia emerging from these socially-constructed discourses is, at worst, that of a body without a mind, of a hollow shell: that is, a picture in which the dementia “obliterates” the subject, and calls for constant care either by the family members  – informal caregivers – or by formal caregivers, at home or in nursing home facilities. This is a powerful pitch by dementia charities, but stigmatises massively those individuals wishing to lead normal lives with more mild forms of dementia.

The stigma is in fact deeply entrenched. The Merriam-Webster Online Dictionary of 2004 defines dementia first as “mental deterioration of organic or functional origin.” Although a generalization [sic], it seems innocuous and close to what is intended by physicians. However, on further reading almost every dictionary refers to its derivation from Latin, meaning madness or out of one’s mind. This debate has, nonetheless, recently hit a new level with the discussion of whether the word ‘dementia’ should be dropped altogether.

‘Minor or major neurocognitive deficits’ as an alternative term has its supporters and critics.

Norman McNamara, well known campaigner for dementia awareness, has even asked on his Facebook page whether dementia “should come under a mental health banner” (reported here).

Kitwood produced a ‘sea change’ in thinking for placing the individual with dementia at the centre of all discourses about it. Within this social-psychological approach to dementia of the Alzheimer type, Kitwood ́’s concept of personhood emerges. Personhood is defined as ‘a status or standing bestowed upon one human being, by others, in the context of social relationship and social being. It implies recognition, respect and trust’.

Dementia is not an unitary construct. It does not only affect the old. And yet ‘messaging’ of dementia consistently has an unpleasant streak of ageism. According to Richard Titmuss, “Viewed historically, it is difficult to understand why the gradual emergence in Britain of a more balanced age structure should be regarded as a “problem of ageing”.”

Ageist stereotypes in Western culture, from the classical period to the present, have gained strength in a social environment in which ageing is perceived as a problem and portrayed negatively. The general connotations of being old – ill, disabled, with failed memory, senile, sad, lonely, grouchy, sexless, boring, lacking vitality, in decline, unable to learn and unproductive. Stereotypes are powerful, as they spread through cultural productions, media, and policies, hence perpetuating them in the social structure, and empowering collective ideologies by marginalising those belonging to the stereotyped group.

That the G8 dementia summit should have such a naked Pharma bent is of course no big surprise. Sales of the five dementia drugs were just shy of $3 billion in 2007. Donepezil and memantine accounted
for 85% of those sales; tacrine had fallen out of use because of its high adverse effect profile. The memory-boosting drugs, whilst expensive, are generally thought to have very modest effects; and there is no evidence in humans that they slow the rate of progression thus far.

However, the effects of medical labels are always mixed.

Medical labels may operate as instruments of empowerment and social recognition that allow individuals to legitimise their grievances in their own and others’ eyes; they may also operate as instruments of professional expansion, social control, and corporate dominance, serving to pathologise normal functioning, unduly reinforce gender norms.

The danger, observed by some, is that the work of medical researchers has transformed what for years was seen as a rare medical condition into a “major killer” and threat to the wellbeing of predominantly the elderly and their caregivers.

This transformation was critical to the consolidation of a movement born from the grievances of sufferers of a range of cognitive, behavioral and personality impairments and their caretakers, because it gave these impair- ments a biomedical definition, thus creating an “entity” deemed modifiable through the application of biomedical science.

The experience of the USA is interesting. As dementia advocacy grew, so did coincidentally the small government ideology of the Reagan years. (A similar phenomenon is happening here with the UK Coalition administration, though perhaps a ‘small state’ should be more accurately described as an ‘outsourced state’). The Omnibus Budget Reconciliation Act of 1980 was the legislative vehicle for the implementation of this ideology, which reduced social services at the same time that it appeared to respond to the “crisis” and public grievances. The Act gave broad authority to the states to restrict Medicaid program eligibility, reduce the number and type of covered services, and limit payments to hospitals.

These reductions in federal support for health and social services occurred at a time when states and cities were experiencing the combined effects of a lagging economy and of various spending limitations imposed by the passage of tax-limiting measures such as Proposition 13 in California and Proposition 2 1⁄2 in Massachusetts.

Yet another element leading to the triumph of “cure” over “care” was a largely idealised notion of “nuclear family” family functions, which grained ground during this time of political and cultural conservatism, and legitimised an inequitable societal workload falling on women in the provision of long-term care.

Clearly, caregiving, a resource-intensive activity falling predominately on women, is neither “budgetable” nor appreciated at the policy level. So again, rather paradoxically, not only did the heart-rending testimony of caregivers to Congressional committees advocating for more support fail to lead to more formal services and relief of women’s workload, it also legitimised the biomedical framework that deviates public support away from caregivers, as it feeds the hope for effective treatments or a cure for dementia that presumably will derail the “explosive” future costs of caring.

Ironically, here in the UK, the website of the “Dementia Advocacy Network” gets taken down at the end of next month. It is in fact the last week of its hardworking manager, Jan Kendall. This Network was invaluable in offering non-statutory guidance for advocacy, in keeping with statement 9 of the recently published NICE quality standard. This statement on independent advocacy.

DAN

Jan Kendall’s experience is sadly not unique. There has been a starvation of funds as many entities in the third sector have found it difficult to cope. The situation in the charity sector is remarkably similar to how City firms have experienced maintained revenues, while high street law firms have been forced to shut down.

The narrative from “Pharma-friendly communities” in the media threatens to drown out what is actually happening on the ground. It is recently reported that budget cuts forced a record 220,000 dementia sufferers to turn to hospital A&E units for help last year.

There is, of course, nothing to stop Big Pharma or large dementia charities to act as good ‘corporate citizens’ , in keeping with the views of Professor Michael Porter at Harvard Business School, in helping to fund frontline care.

But the danger is that this ‘drive for a cure’ represents yet another attack on the running of a universal healthcare system, which should be in principle funded through a fair and equitable general taxation.

Julian Tudor-Hart unsurprisingly puts it perfectly.

“Volume, costs and content of medical care depend on demand, which depends on professional and public expectations. The UK National Health Service (NHS) removed price barriers to access, and depressed expectations became an important factor in cost control. In USA, professional control of care business inflated expectations, and consequent costs. Managed care in the NHS failed to rationalise care because managers seem even less trustworthy than clinicians as arbiters of rational expectations in contexts of permanent underfunding. Development of rational expectations depends on restored trust, mutual and managerial respect for the expertise of both clinicians and patients, and transcendence of the provider-consumer model for value production in medical care.”

This is, contrast, is EXACTLY what person-centred care should be aiming to achieve: allowing people to live well with dementia. The ability of drugs to help people to live well with dementia currently is relatively poor. But Beth’s experience should indeed be about inspiring people who care about dementia. Thanks also enormously to the Department of Health for their efforts in this direction.

Enormous thanks to Dr John Rumbold, Dr Jonathon Tomlinson and Prof Julia Simard for indirect help with this article.

#G8summit: Hazel Blears MP (@HazelBlearsMP) praises patients and carers, and calls for research into living well with dementia

Shibley Rahman 0 Comments

On Thursday 28 November 2013, MPs debated the G8 summit on dementia. The debate was chosen by the Backbench Business Committee following a representation from Tracey Crouch. The application for debate was also sponsored by Hazel Blears and Paul Burstow.

This discussion, by parliamentarians, was in fact a very fair and balanced consideration of the practical issues facing the contemporary scene of dementia.

A lot has hopefully moved on from the attitude that, “Dot has gone a bit dotty”.

Diagnosis of the dementias is only part of the story.

The subsequent ‘treatment’ and ‘cure’ for dementia have been actively debated, but this parliamentary debate acknowledged that we have come on ‘leaps and bounds’ for enabling individuals with dementia potentially to live positively with dementia.

There’s clearly a complex parapluie of factors at play here. Does a current lack of cure for dementia lead to more stigma, or does stigma contribute to a current lack of cure for dementia?

Beyond the Prime Minister’s Dementia Challenge, there will need to be a long-term dementia strategy to expire next year, it is argued.

The UK is leading the discussion of dementia for the G8, but embarrassingly does not have a strategy yet for 2025 compared to some of its international colleagues.

There has been an increase in investment in dementia research, but this has come from a very low base, representing less than 1% of the annual science budget. It is hoped that this budget will increase, including funding for prevention as well as quality-of-life and wellbeing.

A great thing about this debate was its acknowledgement that not all dementia is Alzheimer’s disease; this is crucial for us to consider how best to allocate monies for research into other types of dementia too, such as the frontotemporal dementias.

brain areas

Another brilliant aspect was an appreciation that there needs to be support for carers, for avoidance of ‘crises’ – including support for the ‘Dementia Action Alliance’ – in the run-up to the #G8 dementia and beyond.

You can watch this excellent debate here.

Hazel Blears (@HazelBlearsMP) is the Labour MP for Salford. Her submission to the #G8 debate, as provided in Hansard, is as follows. Hazel is well known to be a ‘champion’ for dementia.

Hazel Blears (Salford and Eccles) (Lab): It is a great pleasure to follow the hon. Member for Chatham and Aylesford (Tracey Crouch), my colleague on the all-party group. It is also a great pleasure to see you in the Chair, Madam Deputy Speaker. This is my first opportunity to contribute to a debate under your chairmanship, and I would like to congratulate you on your election.

While I am handing out congratulations, I would like to congratulate the Prime Minister, too, on the personal commitment he has shown on dementia. [Interruption.] Credit where it is due. Those who have the presidency of the G8 have an opportunity to name a subject around which they would like to mobilise the international community. In playing his card at the G8, the Prime Minister has chosen dementia. I commend him for taking that action. I believe that international collaboration will be the way to achieve the next big leap forward, particularly on the research agenda. I support what the Prime Minister said at Prime Minister’s questions yesterday—that this issue is not a matter only for world leaders, important though they are; it is a matter for every single person in the community, whether they be a world leader, a health Minister or an ordinary citizen. Everybody has a role to play.

I shall start with the people who have dementia, along with their families and their carers. When we promote policy, do collaboration or talk about international research, we must constantly remind ourselves that the people with the disease and their carers and families are usually the most expert people in the system. Therefore, the services that we provide, the quality of care and the innovations we develop have to be shaped and guided by those people. We must empower them to make their voices heard in this debate. When we bring together our creativity, our imagination and the huge brain power in the research community, we must always bring to this issue, too, our own humanity. We must remember that people with dementia are valuable and loved human beings. If we can keep that at the forefront of our minds, we will make progress and be doing absolutely the right thing.

During Question Time yesterday I mentioned a lady called Joy Watson. I met her a little while ago. She is only 55, but she has early-onset dementia. Her family was devastated. When she went into shops, she might be a little confused over her change or what she needed to order, and the shops—and sometimes the customers—would be irritated with her, tutting and asking her to hurry up. She took to wearing a badge, which she designed herself, saying “I have got Alzheimer’s; please be patient with me”. She should not need to do that. Nowadays there is a scheme—I think it is called the purple angel scheme, and Joy is promoting it—so that people can wear a purple angel on their T-shirts as a means of raising awareness in every single part of our community.

In Salford, we have worked on this agenda for a number of years. We have just formed our dementia action alliance, with 30 organisations now committed to action plans to make us, I hope, the first dementia-friendly community in Greater Manchester. As well as health, education and housing bodies, we have the Lowry arts centre and our shopping centres included in the scheme. I think we have the first private-hire taxi firm in the country to be involved in this, Mainline Sevens taxis. It has trained 400 drivers and has an account system so that people with dementia do not have to fiddle with their money when they get in a taxi. All those groups are now dementia aware. That shows the really practical things that can be done.On the research side, I am delighted to say that tomorrow, Salford university will launch the Salford Institute for Dementia, bringing together the faculty of health and social care with departments dealing with the built environment, computers, IT, arts and media—showing the multidisciplinary approach that will apply. That group will draw together and disseminate research on living well with dementia. I think this is a fabulous academic development.

Hazel Blears therefore congratulated the Prime Minister for choosing dementia as a topic he wished to talk about.

It is noteworthy that patients themselves and their carers are the most expert in these complex conditions, and their voices must be heard.

Few will disagree with this.

All stick and no carrot? How much diagnosis, but how much actual care, of dementia?

Shibley Rahman 5 Comments

Carrot and stick

The UK is hosting a G8 summit on dementia in London on 11 December. The summit aims to develop co-ordinated global action on dementia.

A “carrot and stick approach” is an idiom that refers to a policy of offering a combination of rewards and punishment to induce behaviour. It is named in reference to a cart driver dangling a carrot in front of a mule and holding a stick behind it. The mule would move towards the carrot because it wants the reward of food, while also moving away from the stick behind it, since it does not want the punishment of pain, thus drawing the cart.

The “quality outcomes framework” has attracted a lot of criticism recently, in terms of GPs being incentivised to collect data relevant to ‘case finding’ new people with dementia. It has been widely criticised as a form of screening, which, for public health, physicians have found inadvisable.

Dr Martin Brunet, in the influential Journal of Dementia Care, May/June 2013 edition, as a GP and prominent thought leader in dementia primary care, wrote:

What is most worrying about the Alzheimer’s Society figures is the poor access to memory clinics in some areas: “The survey showed the average waiting time for an appointment is 32.5 working days, which is over 4-6 weeks (recommended by Memory Service National Accreditation Programme). Some memory clinics reported longer waiting times of up to 9 months.

Unfortunately this result was ignored by the Health Secretary, who preferred to focus only on diagnosis rates, while blaming healthcare professionals for being unaware of the symptoms and nihilistic about treatment, claiming that: “Some even believe that without effective cure there’s no point putting people through the anxiety of a memory test – even though drugs can help stave off the condition for several years.” His statement about drugs affecting the course of the disease is completely unsupported by the evidence and contrary to both the WAR and WHO report.

Alex Andreou writes in the Guardian on 1 February 2013, “The consolation of Alzheimer’s disease”:

The lack of real support – practical and emotional – for our family has been staggering. Nobody will tell you what to expect, or help you develop the psychological tools for coping. I understand fully that each patient is different, and each patient-carer relationship equally unique. But, surely, some of the features of loved ones’ reactions to it are common.

Alex’s article was even the more striking, as the article was in the context of his experience of his own mother. It was a very touching and moving account, which crystallised what is typical of beliefs, concerns and expectations of friends and relatives, including carers.

What is important as a priority in English dementia policy is an issue which simply won’t go away, and, because of the sheer number of different stakeholders involved, it can hard to work out where this policy exactly is coming from.

David Cameron answered two questions on #G8dementia (the G8 Dementia Summit) this afternoon in Prime Minister’s Questions. It is recorded in Hansard here.

The first question was from Richard Fuller, Conservative MP for Bedford, enquiring about “real progress on dementia research and care”. Cameron decided to take as the focus of his answer his desire to improve dementia diagnosis rates.  The answer did not address dementia care from the NHS.

First question

The second question was from Hazel Blears,  who asked specifically about quality of care and prevention. The answer focused on ‘dementia friendly communities’, which is a global plank of policy but which is being serviced predominantly by the third sector seeking dominant positioning. That plank of policy is of course rightly to be applauded for its inclusivity and many other reasons. The answer did not, again however, address dementia care from the NHS.

Second question

In a press release from the Alzheimer’s Society, it is stated that a key priority of the G8 Dementia Summit claims as follows, ” Stepping up the global drive for a cure and better treatments must be a key priority.”

Big Pharma has not made great progress thus far in finding a cure for Alzheimer’s disease, a major form of dementia.

However, their statement does not mentions of wellbeing in dementia care widely recognised by experts in this area. Whilst the therapeutic efficacy of drugs in early stages for improving memory in Alzheimer’s Disease, the most common form of dementia worldwide, is modest at best, most experts recognise the real progress in research into wellbeing as well as wellbeing interventions.

These aspects include design of the ward, design of the house, attention to the external community (such as signage and paving), advocacy, careful attention to the person and personhood, assistive technology and other innovations. Dementia friendly communities, as an established worldwide initiative, are definitely important too.

David Cameron’s answers will cause genuine concern amongst academics for the #G8 summit. These two questions were about the progress in research and quality of care: i.e. what happens to real patients on the ground, including what happens from the NHS.

These two answers and certain presentations of the G8 summit represent however a potential corporatisation of the dementia debate, which many professional academics and clinicians in this area have been voicing concerns about for some time. It is just as well that bloggers who know the real difficulties involved, as well as actual people living with dementia, will be asked to contribute to the #G8dementia summit – and beyond – to provide balance.

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