Care at home for people with dementia: routines, control and care goals

The aim of the study was to further our understanding of the nature of care at home for people with dementia, with particular emphasis on routines, control and care goals. Its objective was to examine the nature of care as a form of social organisation in the home 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. Findings cover the ways in which carers and people with dementia accomplished personal and household care through routines and exerting control, and how they dealt with aspects like setting and matching care goals. Accomplishing care is shown to be a major challenge for people with dementia and their caregivers, yet in most cases participants developed effective coping strategies. Three themes emerged from the findings: handling competing goals or means to goals, controlling the situation and maintaining a preferred sense of self. This study shows that observational research in the homes of people with dementia is feasible and, when combined with conversational interviewing, is valuable in understanding the processes of caring and what it means to live with dementia. The expertise of carers and care-receivers in managing home care has been identified. Policies and practices that acknowledge such expertise will go some way towards encouraging and helping people to continue, and rewarding them for the vital part they play