Dementia strategy: high hopes but who will pay?

Dementia in numbers

• There are around 700,000 people with dementia in the UK.

• This is expected to double to 1.4 million over the next 30 years.

• The cost of dementia in the UK is around£17bn a year.

The jewel in the national dementia strategy’s crown was anticipated well before it was published. A “memory clinic in every town” would transform dementia services, claimed care services minister Phil Hope last December, a statement that would be echoed across the media right up to, and after, the strategy’s launch two weeks ago.

Given that only a third of people with dementia receive a formal diagnosis and have contact with specialist services at any time in their illness, the news was warmly welcomed. There was palpable relief that the strategy’s ambitious aims had not been killed off by Treasury wonks despite the fact it had been delayed by three months.

Mysteriously, the well worn phrase “a memory clinic in every town” does not appear once in the 100-page policy document. Was it just an attention grabbing soundbite?

Mental Health Network director Steve Shrubb calls it “a good slogan that slips off the tongue quite easily”. He argues that making an early diagnosis of dementia requires a level of specialist care that cannot possibly be provided in every town.

Sophisticated teams

“We need a very sophisticated team,” he says. “You need to screen out other conditions - physical problems and depression. This involves physicians, psychiatrists, and access to scanning equipment.”

This would be a big ask for primary care trusts and mental health services. Is it really what the government has in mind for every single town in England, given that the strategy is being funded by just£150m of new money over two years?

When HSJ asked this question at the strategy launch, health secretary Alan Johnson replied “yes”. It will be up to PCTs to decide on the exact staffing configurations, he added.

But Professor Sube Banerjee, joint strategy lead and the Department of Health’s senior professional adviser on older people’s mental health, has other ideas. “It’s not necessarily about a clinic in every town,” he explains. “It’s not about bricks and mortar. It’s not a place, it’s a service.

“Every person with dementia should have access to a high quality of care and that isn’t the case at the moment.”

He envisages each PCT area dealing with 800-900 cases per year, in settings ranging from people’s homes to city centre one stop shops.

It is important that primary care does not act as a “barrier to diagnosis”, he says. “In some areas it has done, that’s a very clear message.”

Failure to diagnose

Royal College of GPs chair Steve Field denies this, saying: “The evidence of GPs not diagnosing is largely anecdotal.”

It is also widely suspected that some hospital doctors are deliberately failing to diagnose and refer patients, fearing a delayed discharge, the strategy reveals.

Would there be any harm in letting patients self-refer? The strategy is ambiguous. It says: “Local commissioners will wish to consider the extent to which referrals to such services are ‘open’ for the public or rely on referral though primary or adult social care.” Consultations revealed a “genuine divergence of opinion”.

A proposed memory service in Yorkshire, shortlisted for the DH’s integrated care pilot initiative, would offer the most liberal option, taking referrals from patients, GPs, social workers and voluntary care staff.

Bingley and North Bradford commissioning alliance general manager Sue Mundy-Jones, who is involved in the bid, said voluntary sector workers were sometimes identifying dementia care patients living alone who had never been diagnosed. However, it will be important to keep GPs in the loop, she says.

The service will cost around£500,000 over the first three years and is expected to identify 500 new patients and treat 2,000 follow-up cases in a population of 118,000.

Hidden costs

Many managers have reacted to the strategy by emphasising the levels of training and extra staff it will involve. “The workforce challenges that run through the document are probably some of the biggest challenges,” says Mr Shrubb.

Professor Banerjee agrees. “There’s a gigantic training issue,” he admits, but he believes “it’s a realistic ambition”.

“Ten people per PCT isn’t a gigantic number,” he says. “They’re likely to come from existing specialisms, people who want to specialise in dementia. The more general roles will be filled by people coming through.”

He stresses it is vital that any new services complement existing ones, saying: “We mustn’t be closing down older people’s mental health services because of this.”

It is not only memory clinics that will require new staff. The strategy also calls for better care for dementia patients in hospitals.

Up to 70 per cent of acute hospital beds are occupied by older people and up to half of these may have cognitive impairments including dementia, according to a 2005 Royal College of Psychiatrists report.

The strategy highlights the “lack of leadership and ownership of dementia in most general hospitals”. The majority of hospital patients with dementia are not known to specialist mental health services and many of them struggle amid cluttered wards and poor signage.

They have worse outcomes in terms of length of stay and mortality, the impact of which costs the average general hospital more than£6m a year, according to National Audit Office estimates.

To counter this, the strategy calls for all general hospitals to deploy specialist liaison older people’s mental health teams, as well as a senior clinician to lead on quality improvement in dementia.

Clinical leadership

South Essex Partnership University foundation trust chief executive Patrick Geoghegan brands dementia leadership in hospitals “patchy”.

“We have to realign job plans and find ways to fit this into the work of senior nurses, doctors and therapists, because this will only work if we have clinical leaders making it happen,” he says.

Pathways out of hospital are also known to exclude people with dementia because of the perception that they do not meet the criteria for intermediate care or would not benefit from rehabilitation. To address this, the DH is updating its guidance, making it clear that hospitals should offer good quality services for people with dementia.

The aim is to avoid people being rushed into long term residential care. Perhaps unsurprisingly, this has set off alarm bells in the care home sector.

Leon Smith, chief executive of care home provider Nightingale, says people with severe dementia are often better off in institutions than in their own homes. “Nobody wants to come into institutionalised care but the reality is that even if social services are able to provide support, it puts enormous pressure on the carer,” he says.

Another consideration is that good care homes “place a really high priority on stimulating activities”.

“Even if you’ve got 24 hour care at home, you’re not going to get the same stimulation or be in contact with people.”

But the strategy is less than complimentary about the standard of care experienced by many people in residential homes, of whom at least two thirds have dementia. A particular concern is the inappropriate use of antipsychotic drugs, which is subject to a review due to report in the spring.

Inreach services

In addition, input from mental health services is ad hoc “or reactive with referrals at times of crisis”, the strategy says. It recommends bringing in specialist inreach services from older people’s community mental health teams, building on existing capacity rather than setting up separate services. But Mr Smith doubts this is possible.

“At the moment, PCTs are already stretched, as are local authorities,” he says. “How they’re going to cope with all this extra pressure I don’t know.” It can take months for a resident with dementia to get a formal assessment, he says, during which time they lose out on specialist care.

The prospect of many council budgets getting no uplifts in April, added to the increased workload the deprivation of liberty safeguards are expected to create, has left care homes “feeling a little sorry for ourselves”. The dementia strategy is “just another thing”, he says.

But the big caveat in the document is the timescale. While the impact assessment sets out a five year deadline, it is acknowledged that the pace of implementation will vary depending on local circumstances.

While£60m will be provided in 2009-10 and£90m in 2010-11, subsequent funding decisions will only be made after further evaluations, much of which will focus on workforce development. This means “there is no expectation… that all areas will necessarily be able to implement the strategy within five years”.

However, local dementia services will be evaluated in comprehensive area assessments, the first reports of which will be published in November. A national baseline measurement is also being developed to monitor progress on the strategy.

Given the ageing population, it is in everyone’s interests to make this a priority, Dr Geoghegan says. “We’re planning services for us. We are the future.

“We have to ask ourselves what do we want for ourselves and our families if we develop dementia.”

The 17 strands of the dementia strategy

• Public information campaign

• Memory services

• Information for people with dementia and carers

• Continuity of support

• Peer support

• Improved community personal support

• Implementing carers’ strategy

• Improved care in general hospitals

• Improved intermediate care

• Housing, including telecare

• Improved care home care

• Improved end of life care

• Workforce development

• Joint local commissioning strategy and world class commissioning

• Performance monitoring

• Research

• National and regional support

HSJ’s Implementing the National Dementia Strategy conference is on 18 March, www.hsj.co.uk/conferences