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Services for people with dementia in England lag 50 years behind other specialties, such as cancer and stroke services, with early diagnoses and interventions too scarce, says a report from the NHS spending watchdog.
The report, from the National Audit Office, calls for a strong and transparent leadership from the Department of Health to champion and coordinate improvements in dementia services, in the same way that national targets and national services frameworks have helped to modernise services for people with cancer and heart disease.
The report says that dementia care in England is similar to cancer care in the 1950s, when there were few effective treatments, and the diagnosis was withheld from patients to avoid distress.
“Services for dementia are not very adequate and have been given too low a priority within the department of health,” said Karen Taylor, director of health and value for money at the National Audit Office. “We feel quite strongly that there is a need for clear leadership, and at the moment that does not happen. Given that so much money is already being spent on dementia services it should be possible to improve services without huge additional investment.”
Research has shown that many patients with dementia are likely to have delayed discharge from hospital because their condition goes unrecognised. Adopting a more proactive approach and identifying dementia in patients admitted to hospital with hip fracture could reduce hospital stays by an estimated 6.9 days, leading to savings of between £64m and £102m (€150m; $205m) in England alone, says the report.
Having appropriate outreach services for patients with dementia could help to reduce unnecessary hospital admissions in other situations, such as for falls when there is no fracture but patients become distressed and anxious, said Ms Taylor.
At least 560000 people in England have dementia, and the number is predicted to increase by more than 30% in the next 15 years. The total cost to the economy of dementia is estimated to be £14.3bn, including £5.2bn in indirect costs from 476000 informal carers who give up much of their time and earning capacity to look after family members.
Early diagnosis and intervention in people with dementia is known to be cost effective, says the report. But it takes twice as long to diagnose patients in the United Kingdom with dementia as in some other European countries, with only a third to a half of people ever receiving a formal diagnosis.
“When a diagnosis has been made it is poorly communicated because doctors fear they can't offer much support,” said Ms Taylor. “Carers have told us that patients are relieved to get the diagnosis because they then understand what is happening.”
The UK is in the bottom third of countries in Europe in terms of drug treatments for dementia, says the report. Twice as many people in Spain, France, Ireland, and Sweden receive drugs for Alzheimer's disease as they do in the UK. Only people in Poland, the Slovak Republic, the Czech Republic, Holland, and Bulgaria are less likely to receive drugs for Alzheimer's disease than people in the UK.
The National Institute for Health and Clinical Excellence is currently defending its decision to restrict the use of the drugs for people with Alzheimer's disease in the High Court (BMJ 2007;334:1337, 30 Jun doi: 10.1136/bmj.39259.403171.DB), with a decision expected any day.
Although she said that the National Audit Office was not expert in the area of drug treatment for dementia, Ms Taylor added, “We believe that therapies need to be offered and provided earlier.” Reducing delays in diagnosis will enable more people to remain independent for longer and reduce the burden on carers, she added.
But many frontline NHS staff and GPs lack awareness and understanding of dementia. Less than two thirds of GPs surveyed by the National Audit Office felt that it was important to actively look for symptoms of dementia, and only 31% said they had enough training to diagnose and manage the disease. There was an overall drop of 2% in GPs' knowledge of dementia since they were last surveyed by the office in 2004.
The report calls for better undergraduate and postgraduate training for doctors and nurses.
The report, Improving Services and Support for People with Dementia, is available at www.nao.org.uk.