Using carer biographical narratives to explore factors involved in proxy reporting of quality of life in people with dementia

Abstract

Objectives: Quality of life is an important focus of research on dementia, with interest in direct reports of people with dementia and proxy reports of their carers. By exploring the subjective perspectives of unpaid family carers and paid care workers, this study aims to understand how carers construct meaning in narratives about quality of life with dementia.

Method: A case-centred approach involved biographical narrative interviews with 10 carers to explore what was important for people with dementia to have a good quality of life. Detailed narrative analysis attended to the linguistic and structural features of accounts to consider how dementia is conceptualised by carers in the framing of quality of life.

Results: An individual's perception of how dementia impacts on awareness and behaviour was central to their understanding of quality of life. Carers who constructed dementia as a loss of skills and abilities were able to represent quality of life in positive terms despite the challenges of dementia. Carers who constructed dementia as eroding identity represented quality of life less positively and centred on their own means of coping with a challenging care situation.

Conclusion: Findings highlight the importance of helping carers develop positive constructions of quality of life that are associated with understanding dementia as a loss of skills and abilities, rather than as a loss of self. Engaging with subjectivity in carers’ biographical narrative accounts is important in the development of quality of life assessment to understand the meanings and emotions that underlie proxy perspectives.

Keywords:

• caregiving
• dementia
• narrative
• proxy
• quality of life

Acknowledgements

The research could not have happened without the people with dementia, family carers and service providers who gave their time so willingly. I am grateful to the service where I accessed participants, particularly my main contact for her generous support and assistance. I would like to thank my colleague Emma Reynish for her detailed feedback on earlier drafts of this manuscript, and my supervisors Alison Bowes, Cherry Rowlings, Kirsten Stalker and Susan Tester for their guidance and encouragement during my doctoral studies.

Disclosure statement

No potential conflict of interest was reported by the author.