The Association Between Caregiver Burden and Caregiver Health-Related Quality of Life in Alzheimer Disease

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.

Impact on Health-Related Quality of Life and Perceived Burden of Informal Caregivers of Individuals with Alzheimer’s Disease

“…Our results similarly confirm the impact of perceived caregiver burden on the deterioration of the caregiver's HRQL [13,34,35] . We have found that the severity of AD and dependence on a caregiver is inversely correlated to the caregiver's HRQL (general health) measured by the EQ-5D.…”

The positive aspects of caregiving in dementia: A critical review of the qualitative literature

“…Studies indicate that caring can place a significant level of burden on caregivers resulting in poorer physical and psychological wellbeing (Bell, Araki & Neumann, 2001;Gallagher-Thompson & Powers, 1997). This in turn can affect the care they provide, sometimes leading to premature institutionalisation of the person with dementia (PwD) (Bédard, Pedlar, Martin, Malott & Stones, 2000) or even elder abuse (Wolf, 1998).…”

Improving Quality of Life in Caregivers of Alzheimer Dementia Patients- A Stepwise Approach

“…[1] Caregiver time increased for caregivers of AD-affected persons with more severe cognitive impairment. [13] EuroQoL (EQ-5D) is a standardized instrument used for quantifying health related quality of life based on visual analogic scale. This instrument has been developed since 1987 by the EuroQoL Group, and it is based on a descriptive model with 5 dimensions-mobility, self-care, usual activities, pain/discomfort, and anxiety/depression.…”