Dementia services begin long journey out of the dark ages

For those who like data to underpin their planning, the National Audit Office's report on dementia is a gift.

Improving Services and Support for People with Dementia details the numbers of people with dementia (some 560,000 in England) and the cost to the NHS and social care (£3.3bn a year), as well as the overall economic burden, a figure that includes informal caring costs and is estimated at£14.3bn.

Two-thirds of people with dementia live at home, while a third are in care homes, where the£5.8bn bill is split 30-70 between families and the state. Around 476,000 people act as unpaid carers of people with dementia, providing£5.2bn worth of care.

These figures are set to rise steeply. The Alzheimer's Society's February 2007 report, Dementia UK, suggests by 2020 there will be 750,000 people in England with dementia.

It says bluntly: 'With the increase in the population of older people in England, the overall costs are set to grow rapidly as a proportion of spending for taxpayer and citizen.'

The NAO report covers more than figures, though. It looks at whether we are getting value for money for that£3.3bn, and the answer is not reassuring.

It details the delays people experience in getting a diagnosis, both because the stigma of the disease prevents them from approaching their GP and because GPs are ill-equipped to deal with it.

For example, only 47 per cent of GPs answered correctly in an NAO survey of their knowledge of the condition. Seventy per cent of them felt they had too little time to spend on people with dementia.

Memory services are recommended by the National Institute for Health and Clinical Excellence and the Social Care Institute for Excellence as the single point of referral for all people with suspected dementia. Yet only 69 per cent of GPs had a local memory service they could refer patients to.

Only two-thirds of community mental health teams use MRI or CT scanning to confirm diagnoses, despite this being the gold standard.

Many patients had to wait until they were acutely ill and in hospital for a diagnosis - and with two-thirds of elderly patients with dementia also having another accompanying physical illness, this was not an uncommon experience.

But acute hospital staff were more concerned with establishing pre-existing physical conditions.

'Mental health screening of older patients who appear confused is not routine,' notes the report, despite the national service framework for older people requiring such protocols.

Acute hospital nursing staff were not equipped to meet the needs of people with dementia - meaning these patients account for half the number of elderly inpatients whose discharge is delayed.

Make or break

Without redesign, these services will become 'increasingly inconsistent and unsustainable', says the report.

Age Concern policy manager Philip Hurst says it is a wake-up call. 'It presents many of the key issues about under-diagnosis and under-recognition of the extent of the problem and the lack of services to support people and carers,' he says.

'It also makes strong points on the costs further down the line, both financial and to people. They are set to rise exponentially unless we do something.'

And that something is to improve early diagnosis and intervention. The NAO report lists the benefits this will bring.

'Diagnosing more people and doing so earlier may be cost-effective by enabling more to be done to delay progression of the disease,' it says.

The report also says early diagnosis could reduce the number and length of acute hospital stays and admission to expensive long-term care.

On a more human scale, early diagnosis and intervention allow families to plan future medical care and finances.

Alzheimer's Society head of policy and campaigns Andrew Chidgey agrees this is the way forward. 'One thing that frightens commissioners is how they will respond to the rapidly increasing numbers of people with dementia,' he says.

'One of the clear findings is current care is very inefficient and there are potentially opportunities to develop the services.'

The challenge is immense. There are pockets of good practice, some of them listed in the report, but the average health economy has put very little focus on the issue.

Lincolnshire primary care trust assistant director of mental health, learning disabilities and children's services Allan Kitt speaks from experience. The NAO commissioned independent consultants to carry out a survey across the county for the report.

'We had wanted to look at dementia because commissioners and trusts realised it was not right,' he says.

'When the NAO approached us, we grabbed at it with both hands because we knew it would bring some rigour to what was going to be a very difficult piece of work.'

The results confirmed some of what he already knew. 'There was a lack of co-ordination across services, case management was weak and the acute sector via accident and emergency had become the default service,' he says.

'We also confirmed something we had intelligence on but no figures: lots of people were presenting in the acute sector with dementia who were unknown to mental health services.'

The analysis showed that fewer than one in 10 people with dementia identified in the acute setting were known to community mental health teams. They also found that dementia was a diagnosis that excluded people from accessing services they might need for other health conditions.

A one-day bed analysis across the health economy revealed some surprises. It found that 84 per cent of dementia admissions to an acute bed were appropriate - higher than expected.

But, as Mr Kitt points out: 'Sixteen per cent of 800 beds is still an awful lot.'

The survey also looked at local initiatives that had been set up to support people with dementia. And here was a nasty surprise. 'Even where there was a locally good service, they had very little effect. That was because the whole system was not working well,' Mr Kitt says.

The other surprise was how average they were. 'We had been beating ourselves up about it but when it came to looking at how we compared with elsewhere we were pretty normal. I think that adds strength to the work,' says Mr Kitt.

Mr Kitt and colleagues across Lincolnshire's three acute trusts, mental health trust, long-term conditions team and local council are now redesigning the pathways.

It will take a year to complete the work, which will be written into local delivery plans and will require major contractual negotiations. 'We are talking about moving significant activity from one area and re-providing in another,' says Mr Kitt.

For example, the PCT wants to commission liaison services for older people's mental health at its three district general hospitals and pilot an outpatient access clinic to help avoid delayed discharges. It is also liaising with the local authority about flexible intermediate care.

'We also coined the term dementia matron, a case manager who would support and mainstream a dementia service,' he adds.

The hypothesis is that this will save money. 'The acute trust says what we are doing now is costing them more than they are getting from payment by results. This is not going to be a contentious negotiation.'

Westminster PCT director of service development Paul Jenkins is going through a similar process and will this autumn launch a dementia strategy. 'We know we have very fragmented services and commissioners need to develop a. co-ordinated role,' he says.

It is early days but Westminster PCT has commissioned five new intermediate care beds for older people with mental health needs.

It is also piloting intranet-based protocols and pathways for dementia shared by PCTs, GPs, mental health trusts and social services.

'They have been very successful in terms of practitioners using the technology,' says Mr Jenkins. 'When people present with dementia, they know they can look up the protocols.'

For him, the NAO report provides useful ammunition as well as a checklist of what they should be covering. 'People need to understand what's happening locally and do a local needs analysis as well as talk to frontline staff.'

Chris Ball, who chairs the older people's sub-group within the NHS Confederation's mental health network, said strong partnership working was essential.

Mental health trusts have been concentrating on the more seriously ill patients for years, he says, but must now start to get their expertise out into the wider community.

That's a tricky process. Mental health trusts often struggle to get heard in contract negotiations because they get muscled out by acutes.

'One of the big issues is to get to the bottom of what's in it for acute trusts,' he says.

But there are a couple of caveats: development of new services must not be at the expense of services for the seriously ill. 'They will still be there,' he says.

Wary optimism

There is a general feeling that there is at last a tipping point on dementia. It has been ignored for years and the NAO report compares it to the state of cancer in the 1950s: a condition about which professionals felt little could be done to help and loaded with stigma.

There will be follow-up to the NAO report, probably in the form of a public accounts committee hearing in the autumn, at which NHS chief executive David Nicholson will respond on behalf of the Department of Health.

Meanwhile, the Healthcare Commission is refining its focus on dementia. Older people's mental health services will form part of the annual healthcheck for 2007-08, with spot visits to a number of trusts.

A national clinical audit has now been scoped and the commission hopes to make an announcement soon on rolling it out.

Generally within dementia and older people's mental health professionals there is a feeling of optimism, tinged with wariness that the issue might be hijacked by the drugs debate, which is widely viewed as a sideshow.

As NHS Alliance chair Dr Michael Dixon puts it: 'My issue as a GP is not whether I can prescribe Aricept but whether I can get a home help to do some shopping that will help one of my patients stay at home longer.'

Mr Chidgey sums up his mood: 'We are seeing a new approach in terms of the acceptance that dementia is a massive health and social care challenge that will put increasing strain on all our services until we get the planning right.'

Click here to download the NAO report