Introduction

People with dementia require help and support to remain living in their communities, and by far the most common form of care that people with dementia receive is lay care. It is estimated that there are 750,000 people diagnosed with dementia in the UK, of whom 18,500 are under 65 years old (Alzheimer's Society, 2003). Policy has for many years been encouraging community-based services in preference to institutionally based services (DH, 2001), and the majority of older people prefer to stay in their own homes. Because of the nature of dementia, balancing the needs of people involved in providing care with the needs and preferences of a person with dementia often presents dilemmas for all involved.

The incidence of dementia increases with age, and the fact that people are living longer in the UK and other ‘developed’ countries, means that more people in the future will develop dementia. Table 6.1 illustrates the increases in the incidence of cognitive impairment by age in England, and the expected population rises.

By these figures, there were 61,950 people aged 65-74 with dementia in 2002, and this figure will have risen to 83,745 by 2026, with a larger increase for the over 85s. In 2002 there were 131,928 people with dementia over the age of 85, and this figure will have risen to 244,950 by 2026. These are conservative estimates calculated at the lower percentage of 13.8% for 85- to 94-year-olds. In addition, people with learning disabilities are also living longer and experience a high incidence of dementia, usually at a younger age. Developing dementia results in a return to institutional life for some, admission to an institution for others or a change of institution as services are ill-equipped to provide the specialist help that people with learning disabilities, and their carers, require (Hatzidimitriadou and Milne, 2005, p 353; Wilkinson et al, 2005).

The numbers of people with dementia living in communities is difficult to fathom. It is estimated that 5% of people with dementia live in specialised dementia residential and nursing homes. There are many people with dementia living in non-specialist residential homes, perhaps without diagnosis or any treatment or other interventions.