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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.
On the basis of a report by the Comptroller and Auditor General (C&AG),[1] we 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. We took evidence from witnesses from the Department of Health and the NHS.
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