Making Sense of Dementia: Carers' Perceptions

This paper is about how the informal care givers of people recently diagnosed as suffering from dementia perceive and describe that condition. Data are drawn from semi-structured interviews with 106 such care givers (mainly adult children and spouses) carried out in a London Borough and a southern English market town. People's accounts of how they defined what was happening to their relative (his/her condition) could be divided into several categories; these are shown to be based on a number of different parameters: for example, normal versus abnormal; orderly versus unpredictable; simple versus complex; an illness versus not an illness. The reasons for the wide variety of understandings of dementia are examined; it is suggested that it may be due to general lack of information or poor communication with health service staff; to a need to choose a definition which accords with a particular kind of relationship with the dementia sufferer; to the kind of self-presentation favoured by the sufferer; or to the desire to achieve certain kinds of end within particular social contexts.