Could the “social impact bond” help to improve services in dementia care?

It’s impossible to ignore the occasional spate of reports of ‘care home scandals’, including Winterbourne View and Orchid View.

Whilst a direction of travel might be to advance people living ‘successfully’ as long as possible independently, there’ll be some people for whom a care home might be appropriate. There are particular aims of policy designed to support living well with dementia, such as combating loneliness and providing meaningful leisure activities, which can possibly be achieved through high quality care homes.

It’s pretty often that you hear of social care being “on its knees”, due to drastic chronic underfunding. A concern about attracting investment from the private sector is that this will help to accelerate the lack of financial resource allocation from the State. And yet this is the opposite to the argument of resources ‘leeching’ out of the public sector into the private sector.

In terms of the ‘business model’, there are concerns that, to maximise shareholder dividend, staff will not be incentivised to ‘care well’, if they are barely meeting the requirements of the national minimum wage. Whilst the employer emphasises ‘flexibility’ of zero hours contracts, for many such contracts are symbolic of a lack of commitment for sustained employment by the employer.

So the idea of bonds being used to prop up dementia care, currently one of the three big arms of the Prime Minister’s Dementia Challenge, has gained some momentum, for example here. Bonds are effectively “IOUs“, and concerns remain for them as in the private finance initiative – such as who actually benefits, the prolonged threat of penalty for not being able to meet your loan repayments, the issue of who decides the outcomes by which performance will be assessed, and who actually manages or controls the enterprise.

Social Impact Bonds (SIBs) are depicted as “a way of enabling innovation, creating flexible contracts around social outcomes and providing linked investment“. But for some, they are a vehicle for enabling ‘privatisation by stealth’.

The current Labour opposition officially is trying to distance itself from any mechanisms promoting the privatisation of the NHS, and yet it is known Chris Ham and Norman Lamb wish to publish a report imminently on the possible use of SIBs in policy under the auspices of the King’s Fund.

This is the title slide of Hazel Blears’ presentation for the Alzheimer’s Show on Friday.


And here is a section of her talk.

[apologies for the sound quality]

Hazel has a strong personal attachment to campaigning on dementia, and is particularly interested and influential in the direction of travel, not least in her rôle as Vice Chair of the All Party Parliamentary Group on dementia, a cross party group made up of MPs and Peers with an interest in dementia.

Andy Burnham MP, Shadow Secretary of State for Health, has made it clear that it is his firm and settled intention to repeal the Health and Social Care Act (2012). The current Prime Minister’s Dementia Challenge is to come to an end officially in March 2015.

Dementia UK set up some time ago its innovative ‘Admiral Nurses’ scheme, to provide specialist nurses who could help people with dementia and family carers to improve the quality of life of people with dementia and family carers.

Burnham has also let it be known that he intends to subsume social care within the NHS under the construct of ‘whole person care’. Whichever various formulations of ‘whole person care’ you look at, you tend to find a ‘care coordinator’ somewhere. The exact job description of the care coordinator, nor indeed which specialisms might be best suited to accomplish this rôle, is somewhat unclear presently.

But it is all too common to hear of people being diagnosed with dementia being ‘lost in the system’, sometimes for years without follow up.

A “care coordinator” might help to boost access to the following services: emotional support, enable short breaks for people with dementia and anyone in a caring role, promote nutritious meals, ensure medications are given on time, ensure the correct medications have been subscribed (for example avoiding antipsychotic medications in individuals who might be unsuited to these), advice about suitable housing (including downsizing), ensure all physical commodities are properly medically managed; and so the list goes on.

I feel it’s pretty likely there’ll be a ‘first mover advantage‘ effect for any entity which takes up this coordination rôle in dementia care. But the tension between this and the Opposition’s policy is palpable: one cannot talk of this entity being ‘the first to enter the market’, as many wish (and expect) Labour to abolish the internal market in health care.

Such a coordinating entity could well be a recipient of a SIB – but is this like the PFI of social care? PFI by and large has an incredibly negative press amongst members of the general public.

But on the other hand, is it vindictive to prevent a social enterprise from pitching from such a service? If that entity has the technical ‘know how’ to run operations nationally competently and at a reasonable price, would that be preferable to the State running such services when projects such as NHS IT and universal credit have not gone terribly well?

In our jurisdiction, private companies can hide easily being a corporate veil, and are for example currently not readily accountable through freedom of information legislation. This is despite numerous requests to Jeremy Hunt in parliament about parity in disclosure requirements from both private and public providers.

And the track record of some outsourcing companies in the private sector, it is said, has been terrible.

Jeremy Hunt and Norman Lamb are currently in control of NHS and care policy, but there might be a fundamental change in direction from the next Government.

Or there might not be.

Loneliness in dementia is an important societal problem, but why is the proposed solution so exclusive?

“The biggest disease today is not leprosy or tuberculosis, but rather the feeling of being unwanted, uncared for and deserted by everybody” Mother Theresa

I cannot recommend highly enough this account of loneliness in the context of primary care by Dr Jonathon Tomlinson in his powerful blog ‘A better NHS’.

In this, loneliness is a separable issue from whether a corporate can secure advantage by being ‘dementia friendly': it is an important social construct.

Earlier year in a prominent medical journal, it was reported that feeling lonely rather than being alone is associated with an increased risk of clinical dementia in later life and can be considered a major risk factor that, independently of vascular disease, depression and other confounding factors, deserves clinical attention.

Social care for dementia in the real world, in England, is now on its knees. The reality, as a result of deliberate budget cuts from the current admnistration, is quite gruesome.

The campaign against stigmatising stereotypes of people with dementia is a worldwide one.

And yet Norman Lamb frontloaded a standard shill for the Alzheimer’s Society ‘dementia friendly communities’ programme with an elaborate fictional description recently with an elaborate description of a bed-wetting confused person. Such negative propaganda severely runs the risk of further evaporating goodwill for the Alzheimer’s Society.

Lamb comments, “But dementia can be a cruel condition, both for those who have it and for the people who love and care for them.”

It is hard to know precisely what this ‘shock doctrine’ is supposed to achieve, other than to inject a feeling of fear and moral panic for readers of the Guardian. But the article is an extremely manipulative one. It identifies a really important social issue, but makes no room for discussion for anything other than a discussion of the Alzheimer’s Society and their ‘dementia friendly communities’ programme.

The phrase, “So we need an assault on the twin epidemics of dementia and loneliness”, needs to have a big health warning on it. The number of cases of England for dementia has been falling in the last two decades, according to carefully executed research from Cambridge.

Lamb comments, “One million [dementia friends] are expected to be recruited by 2015.” But who’s doing the expecting? What are the penalties for not reaching this particular target?

“More than 50 cities, towns and villages are already taking local action to become dementia friendly.” But Torbay has been dementia friendly for years, but not on the list of Government-approved dementia friendly communities as it has not participated in the scheme run by the Alzheimer’s Society.

If you’ve been on a ‘Dementia Friends’ course, you can’t tweak it a bit and call it your ‘Dementia Friends’ course (apart from anything else as it is protected by a trademark on the UK register.)

There’s the bind. This exclusivity exists because one more ‘dementia friend’ somewhere is one fewer ‘Dementia Friend’ on the official scheme.

This can’t be called anything else but exclusivity.

So Norman Lamb has used a discussion about isolation in dementia to encourage exclusive behaviour. This makes us a laughing stock in our English dementia policy in the eyes of the rest of the world potentially.

Lamb refers to this scheme thus: “All of this should be just the start, the beginning of a massive social movement.”

But how organic is this ‘massive social movement’? The answer is not at all.

It is known that the £2.4 million programme is funded by the Social Fund and the Department of Health. And an eye-watering amount of money has been spent by Public Health England on this marketing campaign just gone as reported here, also to promote “Dementia Friends”.

Clearly not everyone is benefiting from local commissioning decisions to promote dementia. And these decisions have had a catastrophic effect on social interactions for some people with dementia, under the lifetime of this parliament.

For Norman Lamb to pop up and complain about loneliness in dementia having promoted this policy actively in England would it be like a Tory MP complaining his local law centre had suddenly shut down.

Earlier this year, a popular day care centre for people with dementia was reported as closing down. Staff at Mundy House day care, in Church Road, Basildon, were left devestated. Larchwood, the firm which runs the centre and adjoining residential home, claims the day care facility is not making any money.

Meanwhile, last year, a council was considering plans to close up to seven centres providing specialist care for older people suffering from dementia. East Sussex County Council’s cabinet were reported as set to discuss proposals which could see the closure of a number of centres providing day services for older people in Lewes, Bexhill, Hailsham, Crowborough and Hastings.

And, simultaneously at the other end of the country, a residential care home and day centre for elderly and vulnerable adults look certain to close in a shake-up. Plymouth City Council said Lakeside in Ernesettle and St George’s in Stonehouse were to be shut. The council said it was under financial pressures and numbers using the buildings were dwindling. It admitted that some staff would lose their jobs.

But ‘dementia friendly communities’, regulated by a strict standards protocol, or a badge of ‘Dementia Friends’, encourage exclusivity. Lamb in his article makes no attempt to widen the discussion to other possible means of inclusion.


Here’s a valid approach, for example, involving the social media, from Lee on the popular “Dementia Challengers” platform:

“If you care for a relative with dementia life can seem very isolating. Carers sometimes live in a bubble, the roundabout of caring, sorting out finances, juggling family responsibilities and struggling with the challenge of keeping their relative safe, comfortable and happy. There may be issues such as family members not doing their part, or the carer may also have paid employment, young children or grandchildren to care for, or their own health issues. Many of the carers who contact me express their frustrations at feeling alone and unsupported.”

“Social media can be a great way to find other carers, and there’s a wonderful community on Twitter who support each other, share tips and good practice and lighten the day with comments, photos and light-hearted banter. If you are not already connected to the dementia challengers, I’d recommend you spend some time finding out how to use social media so that you can connect with this group of people. It’s easy to dip in and out of conversations when you have the time, or to use that five minute breather between other responsibilities to catch your breath and talk to someone in the same or a similar situation. Here are some tips about how you can use Twitter and Facebook to engage with other carers.”

And – providing supportive evidence for Lee’s argument – is a tweet by someone with familiarity with a rarer type of dementia, known as “posterior cortical atrophy”.


And, if loneliness is so valued by Norman Lamb and colleagues, shouldn’t funding be flooding in for initiatives such as the Healthy Living Club in Stockwell? The group meets for four hours each week for a programme of activities as a focus for the local community, to promote the mental and physical wellbeing of those people well with dementia. Each meeting is run as a social event, which people attend to meet each other, have a good time and share experiences. The Club is run with a team of volunteers and some sessional contributors, led by a paid co-ordinator. It is seen as a blue-print for future dementia care in the community.

Finally – we do know that David Cameron has genuine problems with the ‘C’ word – that is, “caregivers”. He recently managed to get through an entire answer in Prime Minister’s Questions, on zero-hours contracts, in the care industry without mentioning specifically ‘carers’ or ‘caregivers’.  But if they are invisible as the army of millions without whom dementia care in England would implode, would be a big surprise if their loneliness too was completely ignored?

Could personal budgets give better choice and control over cure or care for dementia?

“But in the final months of my mum’s life last year, our family saw both the best of the NHS and things that need to change – like a microcosm of the national strategic challenge. We saw fantastic GP support, great specialist cancer services and unbelievably supportive hospice care. We also saw insufficient community support (not enough district nursing and too few hours of home support via continuing health care). But this was not just an issue of insufficient resources in the wrong places, there were also problems related to a lack of shared decision making. My mum felt too powerless in the face of decisions made by systems that professionals felt they had to go along with and managers enacted.”

“Personal Health Budgets and the left – less heat more light please”

This article is an excellent overview of personal health budgets by Martin Routledge.

Currently in England, according to the Government, more than 15 million people have a long term condition – a health problem that can’t be cured but can be controlled by medication or other therapies. This figure is set to increase over the next 10 years, particularly those people with 3 or more conditions at once. Examples of long term conditions include high blood pressure, depression, and arthritis. Of course, a big one is dementia, an “umbrella term” which covers hundreds of different conditions. There are 800,000 people in the United Kingdom who are thought to have one of the dementias. However, a thrust of national policy has been directed at trying to remedy the diagnosis rate which had been perceived as poor (from around 40%).

The Mental Health Foundation back in 2009 had publicly set out a wish that there would be a high level of satisfaction among people living with dementia and their carers with planning and arranging the ongoing support they receive via the different forms of self-directed support, and that specific examples and stories of real experiences, both positive and negative, in the use of the different forms of self-directed support will have been shared. Indeed, various stories have been fed into the media at various points in the intervening years.

People, however, tend to underestimate the extent to which GPs cannot treat underlying conditions.

For example, a GP faced with a headache, the most common neurological presentation in primary care, might decide to treat it symptomatically, except where otherwise indicated.

A GP faced with an individual which is asthmatic may not have a clear idea about the causes of shortness of breath and wheeziness, but might reach for his or her prescription pad to open up the airways with a ‘bronchodilator’ such as salbutamol.

However, this option not only does not work effectively for memory problems in early Alzheimer’s disease for many (although the cholinesterase inhibitors might have some success in early diffuse Lewy Body’s Disease). It is also very relatively expensive for the NHS compared to other more efficacious interventions, arguably.  In September 2013, it was reported that treatment of mild cognitive impairment with members of a particular class of medications, called “acetylcholinesterase inhibitors” was ‘not associated with any benefit’ and instead carried with them an increased risk of side effects, according to a new analysis. The “meta-analysis” – published in the Canadian Medical Association Journal – looked at eight studies using donepezil, rivastigmine, galantamine and memantine in mild cognitive impairment.

These experts argued that the findings raised questions over the Government’s drive for earlier diagnosis of dementia, but the issue is that medications may not be the only fruit for a person with dementia in the future. One aspect of ‘liberalising the NHS’, a major Coalition drive embodied in the Health and Social Care Act (2012), is that clinical commissioning groups can ‘shop around’ for whatever contracts they wish, with the default option being competitive tendering through the Regulations published for section 75.  When a person receives a timely diagnosis for dementia, it’s possible that a “personal health budget” might be open to that person with dementia in future.

A personal budget describes the amount of money that a council decides to spend in order to meet the needs of an individual eligible for publicly funded social care. It can be taken by the eligible person as a managed option by the council or third party, as a direct (cash) payment or as a combination of these options. At their simplest level, personal budgets involve a discussion with the service user/carer about how much money has been allocated to meet their assessed care needs, how they would like to spend this allocation and recording these views in the care plan. Personal budgets differ from personal health budgets, and from individualised budgets, and you can read an overview of them here.

For some, the debate about ‘personal health budgets’ is not simply an operational matter. They are symbolic of two competing political philosophies and ideologies. A socialist system involves solidarity, cooperation and equality (not as such “equality of provider power” such as the somewhat neoliberal NHS vs ‘any qualified provider’ debate). A neoliberal one, encouraging individualised budgets, views the market in the same way that Hayek and economists from the Austrian school view the economy: as one giant information system where prices are THE metric of how much something is worth. In contrast, the “national tariff” is the health version of interest rates, artificially set by the State. Strikingly, cross-party support is lent in the implementation of this policy plank, largely without a large and frank discussion with members of the general public at election time.

A major barrier to having a coherent conversation about this is that the major protagonists promoting personal budgets tend to have a vested interest in some sort for promoting them. That is of course not to argue that they should be muzzled from contributing to the debate. But it’s quite hard to deny that personal health budgets not offer potentially more choice and control for a person with dementia (possibly with a carer as proxy), unless of course there’s “no money left” as Liam Byrne MP might put it.

With the introduction of ‘whole person care’ as Labour know it, or ‘integrated care’ as the Conservatives put it, it is likely that policy will move towards a voluntary roll-out of a system where health and social care budgets come under one unified budget. No political party wishes to be seen to compromise the founding principle of the NHS as ‘comprehensive, universal and free-at-the-point-of-need’ (it is not as such ‘free’, in that health is currently funded out of taxation), but increasingly more defined groups are being offered personal budgets. Personal health budgets could lead to a change of emphasis from expensive drugs which in the most part have little effect, say to relatively inexpensive purchases which could have massive effect to somebody’s wellbeing or quality of life. Critics argue that, by introducing a component of ‘top up payments’, and with the blurring of boundaries between health and social care with very different existant ways of doing things, that ‘whole person care’ or ‘integrated care’ could be a vehicle for delivering real-time cuts in what should be available anyway.

On Wednesday 9 October 2013, Earl Howe, Lord Hunt and Lord Warner didn’t appear to have any issue about a duty to promote wellbeing in the Care Bill, though they differ somewhat on who should promote that particular duty. This is recorded faithfully in Hansard.

Wellbeing is certainly not a policy plank which looks like disappearing in the near future. Norman Lamb, Minister for State for Care Services, explicitly referred to the promotion of wellbeing in dementia in the ‘adjournment debate’ yesterday evening:

“There is also an amendment to the Care Bill which will require that commissioning takes into account an individual’s well-being. Councils cannot commission on the basis of 15 minutes of care when important care work needs to be undertaken. They will not meet their obligation under the Care Bill if they are doing it in that.”

The broad scope of the G8 summit was emphasised by Lamb:

“The declaration and communiqué announced at the summit set out a clear commitment to working more closely together on a range of measures to improve early diagnosis, living well with dementia, and research.”

And strikingly wellbeing has not been excluded from the dementia strategy strategy at all.

This is in contradiction to what might have appeared from the peri-Summit public discussions which were led by researchers with particularly areas in neuroscience, much of which is funded by industry.

Norman Lamb commented that:

“Since 2009-10, Government-funded dementia research in England has almost doubled, from £28.2 million to £52.2 million in 2012-13. Over the same period, funding by the charitable sector has increased, from £4.2 million to £6.8 million in the case of Alzheimer’s Research UK and from £2 million to £5.3 million in the case of the Alzheimer’s Society. In July 2012, a call for research proposals received a large number of applications, the quality of which exceeded expectations. Six projects, worth a combined £20 million, will look at areas including: living well with dementia; dementia-associated visual impairment; understanding community aspects of dementia; and promoting independence and managing agitation in people with dementia.”

In quite a direct way, the issue of ‘choice and control’ offered by personal health budgets needs to be offered from parallel ‘transparency and disclosure’, in the form of valid consent, from health professionals with persons with dementia in discussing medications. With so many in power and/or influence clearly trumping up the benefits of cholinesterase inhibitors, with complex and costly Pharma-funded projects looking at whether any of these drugs have a significant effect on parts of the brain and so forth, both persons and patients with dementia need to have a clear and accurate account of the risks and benefits of drugs from medical professionals who are regulated to give such an account. This is only fair if psychological (and non-pharmacological) treatments are to be subject to such scrutiny particularly by the popular press.

The personal health budgets have particular needs, and they are obvious to those with medical knowledge of these conditions. Quite often there might be a psychological reaction of denial about the condition and needs, associated the stigma and personal fear about ‘having’ dementia; but this can be coupled with a lack of insight into the manifestations of dementia, such as the insidious behavioural and personality changes which can occur early on in the behavioural variant of frontotemporal dementia. There might also fluctuating levels of need on a day to day basis; like all of us, people with dementia have ‘good days and bad days’, but some subtypes of dementia may have particularly fluctuating time courses (such as diffuse Lewy Body Dementia). Apart from the very small number of cases of reversible or potentially treatable presentations which appear like dementia, dementia is a degenerative condition and so abilities and needs change over time. This can of course be hard to predict for anyone; the person, patient, friend, family member, carer or professional.

So having laid out the general direction of travel of ‘personal budgets’, it’s clearly important to consider the particular challenges which lie ahead. In the Alzheimer’s Society document, “Getting personal? Making personal budgets work for people with dementia” from November 2011, a survey for “Support. Stay. Save.” (2011) is described. This survey was conducted in late 2010, and comprised people with dementia and carers across England, Wales and Northern Ireland. In total there were 1,432 respondents. The survey asked whether the person with dementia is using a direct payment or personal budget to buy social care services. 204 respondents said that they were using a personal budget or direct payment to purchase services and care. In total 878 respondents had been assessed and were receiving social services support, meaning that 23% of eligible respondents were using a personal budget or direct payment arrangement. Younger people with dementia and their carers appeared more likely to have been offered, and be using, direct payments or personal budgets than older people with dementia.

This is intriguing itself because the neurology of early onset dementia. Two particular diagnostic criteria are diffuse Lewy Body dementia which tends to have a ‘fluctuating’ time course in cognition to begin with, and the frontotemporal dementias where memory for events or facts (“episodic memory”) can be relatively unimpaired until the later stages. Clearly, the needs of such individuals with dementia will be different from those who have the early onset of Alzheimer’s disease, where episodic memory is more of an issue. Such differences will clearly have an effect on the types of needs of such individuals, but it can be argued that the patient himself or herself (or a proxy) will be in a better position to know what those needs might be. A person with overt problems in spatial memory, memory for where you are, might wish to have a focus on better signage in his or her own environment for example, which might be a useful non-pharmacological intervention. Such a person might prefer a telephone with pictures of closest friends and family to remind him or her of which pre-programmed functional buttons. Such a small disruptive change could potentially make a huge difference to someone’s quality of life.

As the dementias progress, nonetheless, it could be that persons with dementia benefit from assistive technologies to allow them to live independently at home wherever possible. This is of course a rather liberal approach. It is a stated aim of the current Coalition government that they want to help people to manage their own health condition as much as possible. Telehealth and telecare services are a useful way of doing this, it is argued. According to the Government,  at least 3 million people with long term conditions could benefit from using telehealth and telecare. Along with the telehealth and telecare industry, they are using the 3millionlives campaign to encourage greater use of remote monitoring information and communication technology in health and social care. It is vehemently denied by the Labour Party that ‘whole person care’ would be amalgamated with ‘universal credit’, forging together the benefits and budget narratives. Apart from anything else, the implementation of universal credit under Iain Duncan-Smith has been reported as a total disaster. But there is a precedent from the Australian jurisdiction of the bringing together of the two narratives, as described by Liam Byrne and Jenny Macklin in the Guardian in September 2013. In this jurisdiction, adapting to disability can mean that your benefit award is in fact LOWER. If the two systems merged here – and this is incredibly unlikely at the moment – a person with disability and dementia in a worst case scenario could find that what they gain in the personal budget hand is being robbed to pay for the benefits hand. Interestingly, in the Australian jurisdiction, personal health budgets have an equivalent called “consumer directed care”, which is perhaps a more accurate to view the emerging situation?

There are of course issues about the changing capacity of a person with dementia as the condition progresses, and this has implications for the medical ethics issues of autonomy, consent, ‘best interests’, beneficience and non-maleficence inter alia. Working through carers can be seen a good enough proxy for working directly with the person with dementia, and of course a major policy issue is a clear need to avoid financial abuse, fraud and discrimination which can be unlawful and/or criminal under English law. However this in itself is not so simple. A person with dementia living with dementia, and his or her carer(s) should not necessarily be regarded as a ‘family unit’. Furthermore, caring professional services – both general and specialist, and health and social care – may not be signed up culturally to full integration, involving sharing of information. For example, we are only just beginning to see a situation where some care homes are at first presentation investigating the medical needs of some persons with dementia in viewing their social care (and not all physicians are fluent in asking about social care issues.) It is possible that #NHSChangeDay could bring about a change in culture, where at least NHS professionals bother asking a person with dementia about his perception and self-awareness of quality of life. This is indeed my own personal pledge for staff in the NHS for #NHSChangeDay for 2014.

I, like other stakeholders such as persons with dementia, can appreciate that the ground is shifting. I can also sense a change in direction in weather from a world where people have put all their eggs in the Pharma and biological neuroscientific basket. Of course improved symptomatic therapies, and possibly a cure, one day would be a great asset to the personal armour in the ‘war against dementia’. Of course, if this battle is won, the war to ensure that the NHS is able to provide this universally and free-at-the-point-of-need is THE war to be won, whatever the direction of ‘personal health budgets’. But I feel that the direction of personal health budgets has somewhat a degree of inevitability about it, in this jurisdiction anyway.

Thanks to @KateSwaffer for help this morning too.