Are dementia targets harming patients?

Diagnosis of dementia is below target levels, despite controversial GP incentives. Siobhan Chan reports on the dementia DES and next steps.

Dementia diagnosis rates have soared since the six-month dementia DES was introduced in October 2014, with an average of 9,000 more patients identified each month.

However, the surge in diagnoses triggered by the controversial decision to pay GPs £55 per patient added to their QOF dementia registers remains slower than NHS England would like.

Analysis by GP shows that NHS England's target - to ensure two-thirds of patients with dementia have a formal diagnosis by the end of March this year - is likely to be missed (see graph).

The decision to press ahead with the incentive scheme, despite strong opposition from GP leaders and other health experts, reflects the importance the government attaches to addressing the problem of dementia.

Last month, prime minister David Cameron declared his intention to make Britain the 'best country in the world for dementia care'. Dementia is now the leading cause of death for women aged over 80, and the second leading cause of death for men in this age group.

Meanwhile, the government has launched a scheme to help the public take part in research, and training to help GPs spot the condition is in the pipeline.

An NHS England spokeswoman said it was still hopeful that the drive to diagnose two-thirds (67%) of people thought to have dementia by the end of March would succeed, but added that this was 'not a target but an ambition'.

Arbitrary target

GPs have questioned how useful this ambition is - and whether it could be actively doing harm to patients.

'We've always said that having an arbitrary target isn't helpful, and chasing targets can often lead to perverse outcomes,' says GPC deputy chairman Dr Richard Vautrey.

'There's always a grey area when someone has memory problems but doesn't necessarily fulfil the criteria for dementia. They're left feeling uncertain and worried that they may develop dementia in the future. Sometimes it can lead to people feeling more anxious.'

Professor Steve Iliffe, a former GP and professor of primary care in older people at University College London, agrees that a dementia diagnosis can be the start of decline for a patient.

'I think there's a risk that getting a diagnosis puts you onto an escalator into disability. You're going to lose your driver's licence, you're not going to be able to get insurance for that foreign holiday so easily,' he says.

'We don't know what harm it could be doing. Would you like to be converted from somebody who's a bit muddled and forgetful to somebody who's got a progressive neurodegenerative disease that will end their life in the next three and a half years?

'Of course, if you're distressed by your symptoms - if you can't remember your grandchildren's birthdays, or names - you do need to know what's going on.'

Professor Iliffe says that the official estimate that 676,000 people are living with dementia is likely to be an overestimate.

'The prevalence is probably going down, because society is a bit healthier than it used to be. There are fewer people with dementia than we have been led to expect,' he says.

'It's a policy decision taken in the absence of evidence. It's another example of a government deciding something ought to be done, and doing it, without thinking about whether it's going to work or not.'

The GPC has expressed concerns that the DES incentive scheme simply encourages GPs to formally diagnose patients they are already aware of with dementia, rather than identifying people at high risk.

But Professor Louise Robinson, GP and professor of primary care and ageing at Newcastle University, says the initiative helped her to identify patients within her own surgery who can now receive formal treatment and support.

'I reviewed all of the people on our dementia register last year, and we had about 110 people on our register. But I found almost another 40 people who were taking dementia drugs who weren't on the register.

'I was very surprised, because I am very interested in dementia and I always thought we were doing a good job.'

Most of these people were in care homes, says Professor Robinson, and were receiving appropriate treatment for their condition even without having been officially diagnosed. But after being added to the dementia register, they were 'part of the formal system' and would receive an annual review.

Professor Robinson agrees with the general principle that more diagnoses will mean better support for dementia patients, but says she is 'not sure where the figure of 67% came from, which is the figure that is controversial to me'.

The dementia DES's promise of £55 for each newly diagnosed dementia patient resulted in national headlines about payments for diagnoses and prompted anger from the GPC about the 'inappropriate framing' of the initiative.

Late-stage caring

Professor Iliffe says: 'If I were in charge of the budget, I would swing it away from diagnosis and towards the later stages of the disease, because at the moment, people who need care are not getting it, and people who are not quite so needy are getting more than they need.

'We need to give more priority to late-stage caring. I'm not saying diagnosis is not important, but the balance may not be right. I think restoring a balance is the next task.'

But in the longer term, dementia treatment is likely to move into integrated services across GP practices and specialist clinics, Professor Robinson believes.

'We need to start breaking down the boundaries between primary and secondary care, like we did 20 years ago with diabetes,' she says.

'Service provision will be outstripped by the numbers of people who need assessment and care. Demand will be such, we can no longer rely on secondary care memory services. This will push us into a model where perhaps the more frail elderly, or obvious cases of dementia, will be managed in general practice.'

Case study - GPs focus on identifying dementia

The Gnosall surgery in Staffordshire runs an award-winning monthly clinic for its dementia patients.

The clinic is run as an integrated service in co-ordination with local hospitals. GPs receive training on spotting dementia and specialist care facilitators are brought in to help prepare patients' notes before consultant appointments and to provide post-diagnosis support.

The model saved £400,000 in secondary care costs for patients at the Gnosall surgery alone in 2009, and has since been rolled out to 41 practices across the local GP federation.

Staffordshire and Shropshire Healthcare NHS Trust commissions the service at a cost of £500,000 a year. A similar scheme is being adopted in practices in London.

Dr Ian Greaves, who set up the service, says that its success is simply down to 'being kind' and providing personalised care for each patient.

'We have to be better at caring rather than curing,' he says. 'This is the trickiest disease we've got. You can't say, you've got this, take these tablets, it'll get better - you're in it for the long haul.

'Doctors should care about their patients and make the right decision for them, not be driven by outside influences like targets or payments.'

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