The biggest risk is the future

Steve Hilton

As the neverendum talk perhaps is beginning to wind up, both sides in the European referendum debate are getting their closing speeches to invite you to use your vote in the UK to decide on EU membership.

This week, it was a chance for Steve Hilton, former advisor to the current Prime Minister David Cameron MP, to trot out the standard Brexit arguments. One of them, he emphasised at one point, is: “The biggest risk is the future.” I politically have much more in common with Steve Milton from Innovations in Dementia – though that other Steve isn’t fond of Mr ByeRight T-shirts.

Of course, it is impossible to make the future fool-proof. Dementia is the most feared condition in adulthood, it appears, and it is standard practice for national and international Big Charity to prey on this fear to raise funds. This shock doctrine, in combination with the “one last push” from tabloids such as the Daily Express, is only let down by the harsh reality of the actual scientific evidence.

This negative result about bapineuzumab for mild to moderate Alzheimer’s disease in two global, randomized, phase 3 trials, for example, was only published officially about a fortnight ago.

sneaked out

But the mood music of the press release about this drug from the Alzheimer Association in 2012 was somewhat different. Money is incessantly being pumped into this particular area in dementia.

As the Alzheimer Association press release says,

“The urgency is clear. By midcentury, care for people with Alzheimer’s will cost the U.S. more than $1 trillion every year. This will be an enormous and unsustainable strain on the healthcare system, families, and federal and state budgets. Better treatments and prevention strategies are absolutely necessary to reduce the financial and personal toll the disease takes on individuals, families and the healthcare system now and in the immediate future.”

Big Charities deliberately ramp up the fear to encourage you to fund raise for dementia. This is particularly unfortunate in the UK where a big ‘cure for dementia’ has actually not been forthcoming, whereas social care and intermediate care funding have been on its knees meaning that many adult patients cannot get discharged in a timely way from acute hospitals. This predictably is ruining the patient and carer experience for many. It’s been estimated that 30% at least of all adult admissions for medicine involve someone with dementia.

The fear of the diagnosis can mean that someone, or his or her own friends and family, might delay seeking out an official diagnosis of dementia. I feel, however, there has been a substantial, if not complete, turnaround in societal attitudes towards dementia in England through initiatives such as ‘Dementia Friends’ from the Alzheimer’s Society. But national campaigns are unable to eliminate stigma, prejudice, discrimination and outright bigotry.

Closing the diagnosis gap was not simply down to a reluctance of general practitioners to diagnose dementia, although general practitioners were often blamed publicly for this. Alzheimer’s Scotland at the beginning of June are about to debate whether diagnosis and management for dementia should take place in primary and secondary care, but the mere title of this debate is a huge insult to patients. Patients should be able to choose the venue of where this discussion takes place – it should be beyond the power of professionals to choose where this diagnosis and post-diagnostic support takes place, whatever the actual answer to the question might be.

Take for example the 430,000 people living in care homes. A substantial proportion of them will be living with a dementia such as Alzheimer’s disease, and it would help to meet their care needs if a carer knew this. For example, a care home resident may not be able to remember some interactions he has had with a carer, or may not be able to remember whether he has taken his medication that morning.

Or, take a frail lady who falls over with a subsequent acute admission to a NHS hospital. She might be given a CT scan showing volume loss of brain, and with a background of blood results not explaining cognitive problems and a history of worsening memory problems, and it might be a case for a diagnosis of dementia to be approached.

Courage to face one’s fears is a pervasive strand, whether you’re a recipient or provider of care services. Courage involves making a decision, often in the face of some fear, about the future. Indeed, cognitive neurology research has now consistently shown that one of the cognitive symptoms of people with dementia might in fact be a lack of awareness of problems, or indeed a specific lack of ability to predict forward into the future. This interesting phenomenon is called ‘prospection‘, and future research into this area would be valuable.

So, I feel Steve Hilton is right in the sense that the ‘biggest risk is the future’. But having a diagnosis of dementia is ‘not a death sentence’, in that many people with dementia can live as well as possible for many years with the right care and support. Planning might not just be in care but also in financial and legal affairs. It is said that facing the future is easier in dementia once you finally have an explanation, such as for worsening memory problems. But dementia is not just about memory.

A big risk for people with dementia ‘suffering’ is people with dementia suffering from never-ending cuts to the NHS and social care. That is the reality of the situation, and it is time Big Charity campaigned on that too. Disappointingly this week, there was no representation of people living with dementia giving a talk at the global #WHA69 summit, although they was no shortage of the usual hobnobbers bigging up the successful political leadership. But it’s worth noting that some people would not have had ‘seats at the table’ at all had it not been for certain people with dementia who had put them there.



Project Fear in dementia policy: oranges are not the only fruit



In the run-up to the Scottish referendum, Alex Salmond used to tour the TV studios complaining about ‘Project Fear’, the term for how Westminster were arguing that the world would implode if Scotland became an independent country.

It is projected that a device of the ‘Stay in’ campaigns for the UK membership of the EU will be to argue that the UK will inextricably suffer if it leaves the UK, in areas ranging from the economy to defence policy.

A similar fear was used by Lord Andrew Lansley CBE, previous Conservative MP for South Cambridgeshire, arguing that without the Health and Social Care Act 2012 quality in the NHS would hugely suffer unless competition were at the vanguard of policy to drive up quality.

In fact, there was no convincing evidence even at the time that competition would drive up quality. It was noted at the time that competition was the device to shoo-horn private procurement of contracts everywhere, adding hugely to transaction costs, and impeding the development of clinical pathways purely out of clinical choice.

It is clear to me that ‘integration’ has been introduced in English policy, partly to throw people off the scent of Lansley, and partly to accompany Jeremy Hunt MP’s daily reminders of Mid Staffs and ‘rigorous inspection’ comprising his English NHS policy.

We, it is claimed, cannot afford to fund nurses training from a fair society – the fear makes us make nurses pay for their own education through withdrawal of bursaries. We cannot afford to pay for doctors – for fear of being unable to keep loan repayments for the private finance initiative. We cannot have safe staffing of hospitals due to ‘efficiency savings’, aka austerity.

The fear of Mid Staffs indeed has slowed down recruitment in Staffs due to the toxic publicity which ensued, and helped to accelerate implosion of the local health economy. It also has such a powerful odour that nothing ‘gives’ any more – whether it is the continuing failure of NHS Trusts daily now in ‘special measures’, or the lack of publication of NICE work on safe staffing. The NHS has clearly not been cured.

According to the Alzheimer’s Research UK charity, dementia is like an orange. This campaign is effective in breaking down one of the cardinal myths of dementia believed by many. The myth is that dementia is not caused by physical disease.

Watching an orange lose its segments though runs uneasily with the persistence of self and identity in people living with dementia. The disappearance of the orange does nothing I feel to portray the notion of living well with dementia: that it is possible to live well with dementia through design of the home and built environments, powerful local advocacy, cognitive stimulation therapy, assistive technologies, pet or animal therapy, ambient assisted living, well run residential care settings, indoor and outdoor avenues for creativity and the arts, attention to enhancing general physical health, and so on.

No – it’s the fear of a disappearing orange, that once you’re diagnosed with dementia you’re on a ‘devastating journey’ of doom. With the media talking incessantly about ‘dementia sufferers’, this does very little to stop the fear of a diagnosis through ramping up the stigma. But charities have their own agendas.

For as long as I can remember in the recent NHS and social care, people have been calling for proper funding, including for social care a much needed goal in itself, and also in part to mitigate against the delayed discharges incessantly called ‘bed blocking’ in the media. It happens that if my train is late it is unfair to call me a “platform blocker”. It has been known for years, and certain key figures could have campaigned on it had they so wished, that we need a proper system of care coordination, synchronous patient records, better workforce training, a coherent national system of specialist nurses, and so on. And yet the Alzheimer’s Society market their own #FixDementiaCare. Again it’s Project Fear. But charities have their own agendas.

Everywhere you look now there’s the overwhelming spectacle of fear in global policy. People with one of the 130 dementias invariably want to live with hope following their diagnosis, in addition to the hope of a possible cure (or better symptomatic neuropharmacology) for one or two of the dementias by 2025. Replacing this hope with fear is to them a massive disservice.