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 ( = .001). Patient QoL self-reports for the WHOQOL-BREF ( < .01) and single-item QoL ( < .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.