Please use this identifier to cite or link to this item:
Appears in Collections:Faculty of Social Sciences Journal Articles
Peer Review Status: Refereed
Title: Using carer biographical narratives to explore factors involved in proxy reporting of quality of life in people with dementia
Author(s): Robertson, Jane
Contact Email:
Keywords: caregiving
quality of life
Issue Date: 2017
Citation: Robertson J (2017) Using carer biographical narratives to explore factors involved in proxy reporting of quality of life in people with dementia, Aging and Mental Health, 21 (4), pp. 416-425.
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 ten 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.
DOI Link:
Rights: The publisher does not allow this work to be made publicly available in this Repository. Please use the Request a Copy feature at the foot of the Repository record to request a copy directly from the author. You can only request a copy if you wish to use this work for your own research or private study.

Files in This Item:
File Description SizeFormat 
Robertson_AMH_2017.pdf347.32 kBAdobe PDFUnder Permanent Embargo    Request a copy

Note: If any of the files in this item are currently embargoed, you can request a copy directly from the author by clicking the padlock icon above. However, this facility is dependent on the depositor still being contactable at their original email address.

This item is protected by original copyright

Items in the Repository are protected by copyright, with all rights reserved, unless otherwise indicated.

If you believe that any material held in STORRE infringes copyright, please contact providing details and we will remove the Work from public display in STORRE and investigate your claim.