Improving services and support for people with dementia
Publication of the Committee's 6th Report, Session 2007-08
Edward Leigh MP, Chairman of the Committee of Public Accounts, today said:
"One of the last great taboo subjects is dementia, a condition suffered by more than half a million people in England but neglected by health and social care services. We neglect dementia at our peril, however, given that the number of cases is predicted to soar by over 30 per cent over the next 15 years, as the average age of the population increases.
"Such is the fear of the condition, the belief among both public and professionals that little can be done to help sufferers, and the lack of knowledge of many GPs, that dementia is never formally diagnosed in up to two-thirds of cases. Many suffers are also not being diagnosed early enough and, when diagnosed, end up in hospital beds or care homes, deprived of the specialist care they need.
"The task of looking after a sufferer falls in most cases on informal carers, usually family members. They play a vital role but their burden is a heavy one and they in no way receive the level of support they need from the system. It is essential that local health organisations and social care providers take action now to assess carers' needs and work towards meeting them.
"Dementia must be given the same priority as cancer and coronary heart disease and, like those conditions, be accorded a single leader within the Department of Health with the power to drive through improvements in diagnosis, treatment and care. One of the most important ways forward is to raise among health and social care professionals awareness of dementia and the options available for treating and caring for sufferers.
"I very much hope that the Public Accounts Committee will succeed in raising dementia up the NHS agenda - just as it has done for hospital acquired infection and stroke."
Mr Leigh was speaking as the Committee published its 6th Report of this Session which, on the basis of evidence from the Department of Health and the NHS, examined the prevalence and costs of dementia, diagnosis and early intervention, access to and quality of support services, and experiences of people with dementia in hospital and care homes.
Dementia is a term for a range of progressive, terminal organic brain diseases. Dementia affects over 560,000 people in England and costs some £14 billion a year. Parallels can be drawn between attitudes towards dementia now and cancer in the 1950s, when there were few treatments and patients were commonly not told the diagnosis for fear of distress. There are also stigmas associated with mental health and older people's issues, which present barriers to improving awareness, understanding and openness about dementia.
Despite its significant human and financial impact, the Department has not given dementia the same priority status as cancer and coronary heart disease. As a result the NHS has not afforded dementia the same focus for improvement. Large numbers of people do not receive a formal diagnosis for a variety of reasons including GPs' lack of knowledge and/or confidence to make a diagnosis, fear of dementia, and a perception amongst the public and professionals that little can be done to help people with dementia.
Where a diagnosis is made, it is often not communicated sensitively or appropriately, with patients and their families left without adequate advice or support. People with late-onset dementia have all the additional health problems that accompany old age, and they require support from multiple health and social care service providers. But the task of managing and co-ordinating this care usually falls to their carers.
Carers bear a heavy burden, saving the taxpayer millions of pounds by caring for relatives with dementia at home. Carers are often poorly supported however, with few receiving their entitlement to a carer's assessment and many unable to access good quality respite care or domiciliary care. As a result people with dementia may be admitted to a hospital where they experience longer lengths of stay and poorer outcomes than people who are psychiatrically well; or to a care home, earlier than might otherwise be the case. Both of these outcomes are more costly than domiciliary care. Once in a care home, a lack of dementia beds and staff with appropriate training in dementia care can lead to poor medicines management and other examples of inadequate care.