The association between caregiver burden and caregiver health-related quality of life in Alzheimer disease

Alzheimer Dis Assoc Disord. 2001 Jul-Sep;15(3):129-36. doi: 10.1097/00002093-200107000-00004.

Abstract

The burden experienced by family caregivers of individuals with Alzheimer disease (AD) affects the caregivers' overall health-related quality of life (HRQOL). Assessing the influence on HRQOL is an integral part of determining the efficacy and economic attractiveness of interventions for AD. Generic preference-weighted instruments such as the Health Utilities Index Mark 2 (HUI2) are recommended for measuring HRQOL for cost-effectiveness studies. However, these instruments focus on physical attributes and have not been tested in an AD caregiver population. We administered the HUI2 to a population of 679 caregivers to people with AD at 13 community and institutional sites in the United States. We also administered the Medical Outcomes Study 36-Item Short-Form Health Survey (SF-36), a caregiver time questionnaire, and a caregiver burden instrument. The mean global HUI2 utility score for caregivers was 0.87 and varied little by the affected person's setting of care and AD stage (range, 0.86-0.89; p > 0.2). The caregiver burden scales all varied by the affected person's setting of care, and some also varied by disease severity. The mental health component summary score of the SF-36 for caregivers varied across both disease stage and setting. Caregiver time increased for caregivers of AD-affected persons with more severe cognitive impairment. Generic preference-weighted instruments may not adequately capture differences in the burden of caregivers of those with AD. The development of condition-specific preference-weighted instruments may provide the means to better estimate HRQOL in AD caregivers.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Aged
  • Aged, 80 and over
  • Alzheimer Disease / complications*
  • Alzheimer Disease / economics
  • Alzheimer Disease / psychology
  • Caregivers / psychology*
  • Cost of Illness
  • Cost-Benefit Analysis
  • Cross-Sectional Studies
  • Female
  • Health Status
  • Humans
  • Male
  • Middle Aged
  • Psychometrics
  • Quality of Life*