Caregiver Burden and Quality of Life Across Alzheimer's Disease Severity Stages

Valerie J. van Hezik-Wester*, Ron L. H. Handels, Claire A. G. Wolfs, Tim A. Kanters

*Corresponding author for this work

Research output: Contribution to journalArticleAcademicpeer-review

Abstract

Introduction: The objective is to estimate the caregiver burden in terms of informal care time, health-related quality of life (HRQoL), and societal costs by disease severity (mild, moderate, or severe) and living situation (community-dwelling or institutionalized) of persons with AD (PwAD); and PwAD HRQoL. Methods: Caregivers were recruited through an online panel provider in the Netherlands. The survey used validated instruments, including iMTA Valuation of Informal Care Questionnaire, CarerQoL, and EQ-5D-5L. Results: One hundred two caregivers participated. PwADs received, on average, 26 hours of informal care per week. Informal care costs were higher for community-dwelling PwADs compared with institutionalized PwADs (€480 and €278, respectively). On the EQ-5D-5L, caregivers scored on average 0.797, reflecting a utility decrement of 0.065 compared with an age-matched population. Proxy-rated utility scores for PwADs decreased with increasing disease severity (0.455, 0.314, and 0.212 for mild, moderate, and severe AD, respectively). Institutionalised PwADs had lower utility scores than community-dwelling PwADs (0.590 vs. 0.421). There was no difference in informal care time, societal costs, CarerQol scores, and caregiver EQ-5D-5L scores between disease severities. Conclusion: The burden of AD extends to caregivers in terms of HRQoL and time investment, regardless of the disease severity of the target population. These impacts should be incorporated into the evaluation of new AD interventions.

Original languageEnglish
Pages (from-to)134-141
Number of pages8
JournalAlzheimer Disease & Associated Disorders
Volume37
Issue number2
DOIs
Publication statusPublished - 1 Apr 2023

Keywords

  • alzheimer disease
  • dementia
  • caregiver burden
  • Informal care
  • health-related quality of life
  • INFORMAL CARE
  • HEALTH
  • INSTRUMENT
  • INCLUSION
  • QUESTIONNAIRE
  • RELIABILITY
  • VALIDITY
  • IMPACT

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