Quality of life assessments in individuals with young-onset dementia and their caregivers
Quality of life assessments in individuals with young-onset dementia and their caregivers
Background: quality of life (QoL) has seldom been investigated or explicitly measured in young-onset dementia (YoD). The aims of this study were (1) to investigate and compare QoL self- and proxy reports in a sample of YoD patients and caregivers using different conceptual assessments of QoL and (2) to examine the relationship between caregiver QoL and both burden and mental health.
Methods: there were 52 participants (26 YoD patient-caregiver dyads). The design was cross-sectional and part of a larger longitudinal prospective cohort study of YoD patients and caregivers. Primary measures included generic QoL (World Health Organization Quality of Life-short version [WHOQOL-BREF]), dementia-specific QoL (Quality of Life in Alzheimer's Disease Scale [QoL-AD]), health-related QoL (EQ5D), and a single-item QoL measure. Secondary measures included caregiver burden (Zarit Burden Index), mental health (Hospital Anxiety and Depression Scale), and dementia severity (Clinical Dementia Rating).
RESULTS: patient QoL self-reports were higher than caregiver proxy reports on the QoL-AD (P = .001). Patient QoL self-reports for the WHOQOL-BREF (P < .01) and single-item QoL (P < .05) measure were significantly higher than caregiver self-reports. Dementia severity had no relationship with QoL self-reports. Caregiver burden, anxiety, and depression were negatively correlated with QoL when measured using a generic and single-item measure, but not with the health-related measure.
Discussion: patients and caregivers show a disparity in QoL reports, with patients tending to report higher QoL. Caregiver burden, anxiety, and depression should be areas targeted for interventions when supporting caregivers.
Caregivers, Cross-Sectional Studies, Dementia, Humans, Prospective Studies, Quality of Life
426-433
Dixit, Divyansh
90bc42d3-e09f-47f4-adb5-5692b882886a
Spreadbury, John
164cd819-25dc-49c0-8630-1518a80fc3e6
Orlando, Rosanna
9fa80e0a-d952-45e3-a0dd-5c40a1c62b3c
Hayward, Elaine
d243c653-e70b-4cfb-91fe-efed988fa8d8
Kipps, Christopher
e43be016-2dc2-45e6-9a02-ab2a0e0208d5
September 2021
Dixit, Divyansh
90bc42d3-e09f-47f4-adb5-5692b882886a
Spreadbury, John
164cd819-25dc-49c0-8630-1518a80fc3e6
Orlando, Rosanna
9fa80e0a-d952-45e3-a0dd-5c40a1c62b3c
Hayward, Elaine
d243c653-e70b-4cfb-91fe-efed988fa8d8
Kipps, Christopher
e43be016-2dc2-45e6-9a02-ab2a0e0208d5
Dixit, Divyansh, Spreadbury, John, Orlando, Rosanna, Hayward, Elaine and Kipps, Christopher
(2021)
Quality of life assessments in individuals with young-onset dementia and their caregivers.
Journal of Geriatric Psychiatry and Neurology, 34 (5), .
(doi:10.1177/0891988720933348).
Abstract
Background: quality of life (QoL) has seldom been investigated or explicitly measured in young-onset dementia (YoD). The aims of this study were (1) to investigate and compare QoL self- and proxy reports in a sample of YoD patients and caregivers using different conceptual assessments of QoL and (2) to examine the relationship between caregiver QoL and both burden and mental health.
Methods: there were 52 participants (26 YoD patient-caregiver dyads). The design was cross-sectional and part of a larger longitudinal prospective cohort study of YoD patients and caregivers. Primary measures included generic QoL (World Health Organization Quality of Life-short version [WHOQOL-BREF]), dementia-specific QoL (Quality of Life in Alzheimer's Disease Scale [QoL-AD]), health-related QoL (EQ5D), and a single-item QoL measure. Secondary measures included caregiver burden (Zarit Burden Index), mental health (Hospital Anxiety and Depression Scale), and dementia severity (Clinical Dementia Rating).
RESULTS: patient QoL self-reports were higher than caregiver proxy reports on the QoL-AD (P = .001). Patient QoL self-reports for the WHOQOL-BREF (P < .01) and single-item QoL (P < .05) measure were significantly higher than caregiver self-reports. Dementia severity had no relationship with QoL self-reports. Caregiver burden, anxiety, and depression were negatively correlated with QoL when measured using a generic and single-item measure, but not with the health-related measure.
Discussion: patients and caregivers show a disparity in QoL reports, with patients tending to report higher QoL. Caregiver burden, anxiety, and depression should be areas targeted for interventions when supporting caregivers.
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dixit-et-al-2020-quality-of-life-assessments-in-individuals-with-young-onset-dementia-and-their-caregivers
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e-pub ahead of print date: 9 July 2020
Published date: September 2021
Keywords:
Caregivers, Cross-Sectional Studies, Dementia, Humans, Prospective Studies, Quality of Life
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Local EPrints ID: 489353
URI: http://eprints.soton.ac.uk/id/eprint/489353
ISSN: 0891-9887
PURE UUID: 9a98c8e4-9bfc-43c4-add2-4495a7907def
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Date deposited: 22 Apr 2024 16:40
Last modified: 27 Apr 2024 02:03
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Author:
Divyansh Dixit
Author:
John Spreadbury
Author:
Rosanna Orlando
Author:
Elaine Hayward
Author:
Christopher Kipps
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