Stories from the fourth age: autonomy and the lives of older care home residents

Abstract

Transition to a care home often follows a hospital admission and can be distressing. Care home settings play an important role in the care of many people at the end of life. This longitudinal study employed a narrative approach, aiming to explore the perspectives of older care home residents on transitions to, and life and death within, care homes. Five participants, aged 85 years and over, were recruited from two privately owned care homes in the South-West of England. All participants had a diagnosis of an advanced progressive condition (excluding advanced dementia), or were thought to be frail. Longitudinal interviews (19 in total) were conducted over a ten-month period. A structural narrative analysis was performed and participants’ narratives are presented under three headings, with one participant's story chosen to illustrate each narrative type: ‘becoming a care home resident’, ‘living in a care home’ and ‘death and dying’. Findings revealed that care home residents experience a loss of autonomy and a lack of agency; they are often excluded from decision-making. Older care home residents have few choices with regard to care at the end of life. Further work is required to improve transition into care homes, including support and advocacy during decision-making, which often takes place in hospitals at a time of crisis.