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NAO conference 2007: improving services and support for people with dementia

Nadine Woogara
BSc(Hons) PgDip
Nursing in Practice

Dementia does not share the star status and recognition enjoyed by heart disease or diabetes, but this does not mean its effects aren't far reaching. Burdened with both the stigma of mental illness and old age, some say its reputation is reminiscent of cancer in the 1950s. Today it affects 700,000 people in the UK but by 2025 it will engulf over a million.
"Dementia is not just a sudden crisis, it's a creeping tide. The more we address it the more improvements will enrich society," said National Audit Office (NAO) Auditor General Sir John Bourne.
Recognising this dilemma, the NAO investigated and in July published results of its report, Improving Services and Support for People with Dementia 2007. The ensuing conference gave professionals an opportunity to debate the NAO's findings and work towards providing consistent and high-quality dementia care.

What became of the early diagnosis?
The conference universally agreed that the best type of dementia diagnosis is one that's made early. To the delegates' delight, Mental Health Minister Ivan Lewis noted that the elderly have a right to live out their potential, just as children do. "Early diagnosis", he said, "can make sure this is possible. Stepping in before symptoms become acute can ensure that money is spent - not in a hospital - but in primary care at a time when a patient's quality of life can really benefit."
In reality, however, this is far from what actually happens. The NAO found that only half of all dementia patients receive an early diagnosis; most are not told they have dementia until a crisis causes them to be admitted into hospital.
Karen Taylor, the NAO's director of health value for money studies, said that perhaps negative GP attitudes prevent more early diagnoses from taking place. The NAO report showed that only a third of GPs thought it important to actively search for early signs of dementia. Perhaps not through laziness, but because only half of GPs felt anything could be done to improve their patient's quality of life once the diagnosis had been made.
But it is not only health professionals who prevent early diagnoses from taking place. Martin Orwell, professor of aging and mental health, said dementia is often overlooked in primary care as people tend not to ask for help, are embarrassed and do not want to be assessed. If health staff are educated about dementia, he says they can start to recognise symptoms and feel more confident that an early diagnosis will be worthwhile.

Specialist dementia nursing
When it comes to care in the community, Amanda Hutchinson, head of older people strategy at the Healthcare Commission, noted that district nurses sometimes do not realise dementia can interfere with normal nursing procedures. Nurses still depend on patients to understand and respond to their own body signals, but this can be impossible for someone with dementia.
The answer, says Amanda, is education - to make dementia a compulsory unit for all nursing undergraduate curricula and to give it equal standing to other modules such as wound management and sexual health.    
Once universities start to churn out nurses with dementia know-how, and even before, it may be possible to create a specialist nursing dementia role, says Martin Orwell. Every primary care trust or every practice could have its own specialist dementia nurse. Martin believes it may be possible to create specialist dementia nurse-led clinics that provide follow-up dementia care after the initial diagnosis. Specialist clinics could then work in parallel with main assessment centres, offering clinical and psychological therapy and providing consistent and quality care.  
Creating a specialist dementia nurse role may have a knock-on effect in the community. MP Ivan Lewis said professionals at the frontline have the power to raise awareness in society to ensure that people with dementia are treated with dignity and respect. The more people understand what it means to have dementia, the less likely it is that prejudice will foster among ignorance.  

Towards holistic care
An underlying theme to the conference was that real change can only come about with a well woven and integrated path. Tim Kendall, joint director of the National Collaborating Centre for Mental Health, said that today's dementia budgets are not shared between health and social care, but each sector has its own separate commissioning arrangements. Professionals speak in their own specialist jargon that others struggle to understand and may find offensive. Methods of inspection, assessment and performance management differ vastly between health and social services.
MP Ivan Lewis said it was time to get rid of the walls that exist between the NHS, the voluntary and the private sector. People do not care where their treatment comes from, as long as it provides them with a life not a service. There may be different components to the dementia care system, but the lines between them should be invisible. Organisations should know how to work together and create a system that is not too bureaucratic but responsive and accessible. As Amanda Edwards, head of knowledge services for the Social Care Institute for Excellence, put it: "Dementia care needs to be seen with binocular vision - a unified view from separate eyes."

To the future
There is much to be done before everybody, public and professionals alike, know what it is to have dementia. MP Ivan Lewis commented that we need to create a society where the elderly can enjoy maximum quality of life. This can be achieved by involving dementia patients in the process of creating dementia care. They are the real experts, Ivan Lewis reminded us. Instead of forcing people into a system we should let the system respond to them. It was said that the scale of ambition needs to match the scale of the challenge, and this has not happened so far. Hopefully, the NAO's new report will trigger a shift in the way dementia is treated in society.