Perceptions and Management of Change by People with Dementia and Their Carers Living at Home

Abstract

This article presents findings from a research study that examined, by observation and interview, the nature of care as a form of social organization in the homes of people with dementia whose care was at least partly provided by relatives or friends. Twenty situations were included in which the carers and people with dementia were interviewed. Each participating pair was observed for an average of nine hours. Change was perceived, on the whole, in negative terms for both caregiver and the person with dementia. The main categories of change to emerge were those to do with normal routines or practices, perceived deterioration in the condition of the person with dementia, and changes concerning living arrangements. Coping strategies used reflect those in the general coping literature. They included denial, attempts to restore the situation or regain control, making positive comparisons, attempting to understand dementia and acceptance.