Quality of Life Assessments in Individuals With Young-Onset Dementia and Their Caregivers. (September 2021)

• Record Type: Journal Article
• Authors: Dixit, Divyansh; Spreadbury, John; Orlando, Rosanna; Hayward, Elaine; Kipps, Christopher
• Is Part Of: Journal of geriatric psychiatry and neurology. Volume 34:Number 5(2021)
• Page Start: 426
• Page End: 433
• Publication Date: 2021-09
• Subjects: dementia -- quality of life -- young-onset dementia -- caregiver burden -- caregiver; Geriatric neurology -- Periodicals; Geriatric neuropsychiatry -- Periodicals; Geriatric psychiatry -- Periodicals; Nervous system -- Diseases -- Periodicals; 618.97689
• DOI: 10.1177/0891988720933348
• Languages: English
• ISSNs: 0891-9887

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.