Making sense and finding meaning: comparing narratives of older people with dementia and carers about the quality of an ordinary life

Abstract

This research examines narratives about the quality of everyday life with dementia. The aim of the study is to compare and contrast differing perspectives about the impact of ageing and dementia upon the lives of older people with dementia. A total of 50 interviews with six older people with dementia and ten family and paid carers were conducted over a two-year period. Narrative analysis was used to examine the content and structure of their accounts to understand their perspectives on what matters most to people living with dementia. This in-depth analysis enabled an exploration of different social concepts and narrative constructions that people draw upon in making sense of their experiences of caring and living with dementia. The analysis demonstrated that older people incorporate ageing and dementia into a continuing sense of self. Positive constructions of living with dementia involve the ability to lead a meaningful life that supports pre-existing social roles and relationships and active engagement within the family and community. The emphasis is on living an ordinary life while responding to the challenges associated with cognitive impairment and social stigma. For family and paid carers, perceptions of a meaningful life depend on how the identity of the older person with dementia is positioned relative to past social roles and relationships. Positive constructions assume continuity as opposed to focusing on disruption in the person’s identity and life. Carer perspectives are also influenced by how the person is perceived to conform to social standards of normality. The narratives of older people with dementia reflect their active struggle to find meaning in terms of realising their sense of self within a social world that largely defines them as different and out of the ordinary. The narratives of carers resonate with emotional difficulty, reflecting their struggle to make sense of a life that is not represented as essentially normal. These findings show that, for all, finding meaning in everyday life depends upon making sense of that life as normal and ordinary.