Quality of Life Assessments in Individuals With Young-Onset Dementia and Their Caregivers

J Geriatr Psychiatry Neurol. 2021 Sep;34(5):426-433. doi: 10.1177/0891988720933348. Epub 2020 Jul 9.


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.

Keywords: caregiver; caregiver burden; dementia; quality of life; young-onset dementia.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Caregivers
  • Cross-Sectional Studies
  • Dementia*
  • Humans
  • Prospective Studies
  • Quality of Life*