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, Anna, Knapp, Martin and Banerjee, Sube (2019) Understanding the quality of life of family carers of people with dementia: development of a new conceptual framework. International Journal of Geriatric Psychiatry, 34 (1). pp. 79-86. ISSN 0885-6230

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Abstract

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 nine staff and two focus groups with six family carers and five 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
Keywords: Alzheimer's disease (AD), carers, dementia, family carers, informal carers, Quality of Life (QOL)
Schools and Departments: Brighton and Sussex Medical School > Neuroscience
Subjects: R Medicine > RC Internal medicine > RC0321 Neurosciences. Biological psychiatry. Neuropsychiatry > RC0438 Psychiatry > RC0512 Psychopathology > RC0513 Psychoses > RC0521 Dementia
Depositing User: Nicolas Farina
Date Deposited: 01 Oct 2018 15:35
Last Modified: 12 Jul 2019 12:45
URI: http://sro.sussex.ac.uk/id/eprint/79140

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