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

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

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.

Alzheimer's disease (AD), carers, dementia, family carers, informal carers, Quality of Life (QOL)
0885-6230
1-8
Daley, Stephanie
338c7a65-d739-4f95-8e6c-5ba7e6615473
Murray, Joanna
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Farina, Nicolas
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Page, Thomas E.
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Brown, Anna
22273f65-a3b9-4c8e-a4fd-54b86cd9d588
Basset, Thurstine
ea6b196c-53c6-437d-9218-aee894c3c410
Livingston, Gill
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Bowling, Ann
796ca209-687f-4079-8a40-572076251936
Knapp, Martin
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Banerjee, Sube
c89df0e0-46cf-482b-ac93-6c39333c93b5
Daley, Stephanie
338c7a65-d739-4f95-8e6c-5ba7e6615473
Murray, Joanna
e4c89a6e-d81c-4378-8786-0e82eeed6b58
Farina, Nicolas
1a2b8f7f-a5f8-4ff8-a32e-df6d43ada369
Page, Thomas E.
96698df4-5dff-4aea-a205-d5004aaed43e
Brown, Anna
22273f65-a3b9-4c8e-a4fd-54b86cd9d588
Basset, Thurstine
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Livingston, Gill
ea18efb5-2f07-42a9-be5e-0d7b5b02f229
Bowling, Ann
796ca209-687f-4079-8a40-572076251936
Knapp, Martin
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Banerjee, Sube
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Daley, Stephanie, Murray, Joanna, Farina, Nicolas, Page, Thomas E., Brown, Anna, Basset, Thurstine, Livingston, Gill, Bowling, Ann, Knapp, Martin and Banerjee, Sube (2018) Understanding the quality of life of family carers of people with dementia: development of a new conceptual framework. International Journal of Geriatric Psychiatry, 1-8. (doi:10.1002/gps.4990).

Record type: Article

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.

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Accepted/In Press date: 7 August 2018
e-pub ahead of print date: 25 September 2018
Keywords: Alzheimer's disease (AD), carers, dementia, family carers, informal carers, Quality of Life (QOL)

Identifiers

Local EPrints ID: 425025
URI: http://eprints.soton.ac.uk/id/eprint/425025
ISSN: 0885-6230
PURE UUID: 85602fad-2e64-4f1e-aa24-8d852a978c18

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Date deposited: 09 Oct 2018 16:30
Last modified: 07 Oct 2020 00:14

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