Tag Archives: G8 Dementia Summit

Did the Prime Minister's Dementia Challenge park a 'National Care Service' for good?

I’m still unclear where and when the Prime Minister’s Dementia Challenge came about.

Airbrushed for challenge

The lack of a clear audit trail for the Prime Minister’s Dementia Challenge

I know that it was launched in March 2012.

“Dementia” is not mentioned in the Conservative Party Manifesto for the general election of 2010. It is however mentioned in the Coalition Agreement, with broadly the same wording as the Liberal Democrat manifesto 2010, but that still doesn’t explain how this became the “Prime Minister’s Challenge”.

In summary, the one line in the Coalition Agreement is drafted as follows:

“We will prioritise dementia research within the health research and development budget”

But still no specific mention of that “Challenge”.

The distortion effect of the Prime Minister’s Dementia Challenge

The Dementia Challenge prioritises the Alzheimer’s Society, and it is clear that other charities, such as Dementia UK (which is experiencing threats of its own to its superb ‘Admiral nurses’ scheme) trying to plough on regardless.

The £2.4 million “Dementia Friends” programme emerged from the Social Fund and the Department of Health. The scheme has been launched in England at first, and it is said that the Alzheimer’s Society is hoping to extend it to the rest of the UK soon.

Indeed, many supported the fundraising for Dementia UK only this morning in the London Marathon too.

Dementia UK London marathon

There is no official cross-party consensus on the “Prime Minister’s Dementia Challenge”, though individual Labour MPs support the activities of “Dementia Friends”.

The market dominance of the Alzheimer’s Society for ‘Dementia Friends’ compared to other charities does not seem to have been arrived at particularly democratically either. There is no conceivable reason why other big players, such as “Dementia UK” or the Joseph Rowntree Foundation, were excluded from this friendship initiative.

Ironically, Japan upon which befriending is modelled is not ashamed of its care service.

It is palpably unacceptable if people are ‘more aware of dementia’ without a concominant investment in specialist memory clinics, or care and support services.

Genuine concerns from stakeholders involved with dementia care

It is clear amongst my followers on Twitter that the nature of this “Challenge” is causing considerable unease.

Concidentally I was reminded of this this morning:

But there are now some very serious questions about this policy, particularly from the ‘zero sum gain’ effect it has had knock-on in other areas of dementia policy.

When @Ermintrude2 looked into this at the time, the response was a bit confused.

And indeed Ermintrude has penned some thoughts at the time on this high impact blog.

What has happened to social care in the name of ‘improvement’, I agree, is very alarming.

But we do know full-well about the ‘democratic deficit’.

False pledges and threats, and unfulfilled promises

The general public were unaware that a 493 Act of parliament called the ‘Health and Social Care Act’ would be sprung on them, with a £3 bn top-down reorganisation.

But this was Lansley’s “emergency conference” on Labour’s “secret death tax” in February 2010.

A number of views were expressed at the time, including the need for better care from the Alzheimer’s Society at the time under a different CEO.

The full thrust of ‘Dementia Friends’ is a total change of mood music from February 2010’s concerns of the Alzheimer’s Society reported here:

“Care and treatment for sufferers of dementia should be at the heart of the general election campaign, the Alzheimer’s Society charity has said.”

Where has the Society been in campaigning on swingeing cuts in social care?

Also, in February 2010, Gordon Brown’s speech at the King’s Fund was reported, where Brown made a significant pledge.

“Mr Brown also announced that the government’s planned reforms to community and primary care health services also included a commitment to provide dedicated “one-to-one”nursing for all cancer patients in their own homes, over the next five years.”

We do know that the NHS has been persevering with this programme with ‘efficiency savings’.

In October 2012, it was reported that nearly £3bn was indeed returned to the Treasury, and it is unclear how, if it at all, it was returned to front line care.

So it’s possible that Brown’s plan, the subject of a hate campaign at the time from the Tory press, might have worked in fact.

Dilnot

In 2010 Andrew Dilnot had been tasked by the then government to propose a solution to the crisis in social care.

The response was from February 2013, after the top-down reorganisation.

“Mr Dilnot suggested a cap on how much anyone would be required to pay for their care costs over the course of a lifetime, suggesting a ceiling of between £25,000 and £50,000 (in 2010/11 prices). Beyond this point, the state would take on responsibility for the majority of the bill.

The Government today announced that from 2017 it intends to establish a cap of £75,000 in 2017 prices which, according to Mr Dilnot’s calculations, equates to approximately £61,000 in the 2010/11 prices (the basis of his report). If we’re to make a claim about the extent to which the Government has ‘watered down’ Mr Dilnot’s proposal, it’s crucial that we account for this inflationary effect.”

Resurrection of the ‘National Care Service’ by Andy Burnham MP yesterday, Shadow Secretary of State for Health

This issue may have to be revisited at some stage. Andy Burnham MP yesterday in the Bermondsey Village Hall, without much press present, mooted the idea of how a social care service could be established on the founding principles of the NHS, and would be a significant departure from the piecemeal 15-minute slot carers.

Burnham stated that care provided by inexperienced staff on zero-hour contracts was a problem.

An experienced member of the audience highlighted the phenomenal work done by unpaid family caregivers particularly for dementia.

The topic of a compulsory state insurance is interesting.

Social health insurance systems share a number of similar features:

  • Insured persons pay a regular contribution to a health insurance fund based usually on income rather than reflecting their risk of illness.
  • Clinical need and not ability to pay determine access to treatments and health care.
  • Contributions to the social insurance fund are kept separate from other government mandated taxes and charges.

In his classic article, Kenneth Arrow (1963) argues that, where markets fail, other institutions may arise to mitigate the resulting problems: ‘the failure of the market to insure against uncertainties has created many social institutions in which the usual assumptions of the market are to some extent contradicted’ (p. 967).

Rationale for this method of funding

A great advantage of ‘social insurance’ is, because membership is generally compulsory, it is possible (though not essential) to break the link between premium and individual risk.

There might be other important aspects. For example, both employers and employees pay contributions. Also, there might be Government support for those who are unable to pay goes through the insurance fund.

I have written before on the increasingly sophisticated methods of genetic diagnosis of dementias, and how this might impact on our health systems.

The philosopher John Rawls (1972) argues that in a just society the rules are made by people who do not know where they will end up in that society, that is, behind what he called the “Veil of Ignorance”.

Insurance can be interpreted as an example of solidarity behind the Veil of Ignorance: a person who joins a risk pool does not know in advance whether or not he will suffer a loss and hence have to make a claim. Insurance thus has moral appeal.

Ultimately there is a problem as to what type of care might be covered.

Does the policy cover only residential care, or also domiciliary care; is a person entitled to residential care on the basis of general infirmity or only if he or she has clearly-defined, specific ailments?

In the Dilnot recommendations, the cap on care payments did not include the “hotel costs” that a care home will charge. In other words, people in residential care will still need to pay (at the Dilnot report’s estimate) between £7,000 and £10,000 per year to fund their accommodation and living expenses. 

Furthermore, how will the answers to these questions change with advances over the years with changes in the actual prevalence of dementia, or in the implementation of ever increasingly sophisticated medical technology?

It has been proposed (Lloyd 2008) that long-term care could be financed via social insurance, with the premium paid as a lump sum either at age 65 or out of a person’s estate. The idea behind this proposal is twofol.

Firstly, as a person gets older, the range of uncertainty about the probability of needing long-term care  becomes smaller.

Secondly, if a person can buy insurance for a single premium payable out of his or her estate, the cost of long-term care does not impinge on his or her living standard during working life or in retirement, but can frequently be taken from housing wealth.

Development of social health insurance systems have normally been in response to concerns that inadequate resources were mobilised to support access to health services.

The continuing swingeing cuts in social care

And these cuts have continued: this report is from March 12 2014,

An analysis by Mind found that the number of adults with mental health needs who received social care support has fallen by at least 30,000 since 2005, a drop of 21%. Cuts to local authority social care budgets – the majority of which have hit since 2009 – have left a funding shortfall for care of up to £260 million, the charity said.”

Since there is no simple answer to the question of how much is the appropriate level of support, the issue of adequacy is best thought of as being a level that is considered appropriate in the country given its total resources, preferences and other development priorities.

And where are people from charities campaigning on this issue?

This issue of course was not considered at all in the G8 Dementia Summit, which focused on more monies for personalised medicine, genetic and molecular biology research, in response to concerns from an “ailing industry”.

Conclusion

I am actually truly disgusted at this unholy mess.

 

 

 

References

Arrow, Kenneth F. (1963), ‘Uncertainty and the Welfare Economics of Medical Care’, American Economic Review, 53: 941–73; repr. in Cooper and Culyer (1973: 13–48), Diamond and Rothschild (1978: 348–75), and Barr (2001b: Vol. I, 275-307).

Lloyd, James (2008), Funding Long-term Care – The Building Blocks of Reform, London:

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

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.

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