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Understanding the quality of life of family carers of people with dementia: Development of a new conceptual framework

Daley, Stephanie, Murray, Joanna, Farina, Nicolas, Page, Thomas, E., Brown, Anna, Bassett, Thurstine, Livingston, Gill, Bowling, Ann, Knapp, Martin R J., Banerjee, Sube and others. (2018) Understanding the quality of life of family carers of people with dementia: Development of a new conceptual framework. International Journal of Geriatric Psychiatry, . pp. 1-8. ISSN 0885-6230. E-ISSN 1099-1166. (doi:10.1002/gps.4990)


Background Dementia is a major global health and social care challenge, and family carers are a vital determinant of positive outcomes for people with dementia. This study’s aim was to develop a conceptual framework for the Quality of Life (QOL) of family carers of people with dementia. Methods We studied family carers of people with dementia and staff working in dementia services iteratively using in-depth individual qualitative interviews and focus groups discussions. Analysis used constant comparison techniques underpinned by a collaborative approach with a study-specific advisory group of family carers. Results We completed 41 individual interviews with 32 family carers and 9 staff and two focus groups with 6 family carers and 5 staff. From the analysis, we identified 12 themes that influenced carer QOL. These were organised into three categories focussing on: person with dementia, carer, and external environment. Conclusions For carers of people with dementia, the QOL construct was found to include condition-specific domains which are not routinely considered in generic assessment of QOL. This has implications for researchers, policy makers and service providers in addressing and measuring QOL in family carers of people with dementia.

Item Type: Article
DOI/Identification number: 10.1002/gps.4990
Uncontrolled keywords: Alzheimer’s disease (AD), Carers, Family carers, informal carers, Dementia, Quality of Life (QOL)
Subjects: B Philosophy. Psychology. Religion > BF Psychology
Divisions: Faculties > Social Sciences > School of Psychology
Depositing User: Anna Brown
Date Deposited: 28 Aug 2018 09:02 UTC
Last Modified: 29 May 2019 21:03 UTC
Resource URI: (The current URI for this page, for reference purposes)
Daley, Stephanie:
Farina, Nicolas:
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