'Nobody really understands' - dementia and the world of family carers.

This thesis provides a comprehensive account of the situation of informal unpaid carers of older people with dementia. Dementia is characterised by a progressive degeneration of intellectual ability, leading to impairment of memory, judgement, and perception, and personality changes. There is no cure, and death typically occurs as a result of pneumonia, strokes, or falls, after a duration of several years. The majority of demented older people are cared for at home often at considerable emotional, financial, social, and physical costs to the carer. This exploratory research highlights the carer’s situation both within the informal network of care as well as in relation to formal care provision. Qualitative interviews were conducted with spouse carers as well as adult children, recruited through carer support groups in Sheffield. The thesis presents the carers’ views and interpretations of their situation and the findings reveal far-reaching misunderstandings and a mis-match between the views of carers and service providers. Overall, an inadequate understanding of the role of carers and of their needs has been identified. Current service provision, which is mainly based on instrumental support such as day care and respite care, has been found to be inappropriate for the majority of carers and their demented relative. The thesis identifies three main areas where reform is needed and suggests improvements for the recognition of dementia, the management of care, and the empowerment of carers.