Research

Development and preliminary evaluation of a quality of life measure targeted at dementia caregivers

Barbara G Vickrey¹ , Ron D Hays² , Michele L Maines¹ , Stefanie D Vassar¹ , Jaime Fitten³ and Tony Strickland¹

¹  University of California, Los Angeles Department of Neurology, 710 Westwood Plaza, Los Angeles, California 90095-1769, USA

²  UCLA Department of Medicine, Division of General Internal Medicine & Health Services Research, 911 Broxton Plaza, Los Angeles, California, 90095-1736, USA

³  UCLA Department of Psychiatry and Biobehavioral Sciences, 760 Westwood Plaza, Los Angeles, California, 90095-1759, USA

author email corresponding author email

Health and Quality of Life Outcomes 2009, 7:56doi:10.1186/1477-7525-7-56

Published:	21 June 2009

Abstract

Background

Providing care for individuals with a progressive, debilitating condition such as dementia can adversely impact the quality of life (QOL) of informal caregivers. To date, there is no existing caregiver quality of life measure for dementia caregivers with breadth of coverage or that is applicable to caregivers of diverse ethnic backgrounds. The purpose of this study was to develop and evaluate a caregiver-targeted quality-of-life measure (CGQOL) for informal caregivers of persons with dementia that can be used with caregivers from a variety of ethnicities.

Methods

91 items were field tested by telephone interviews with 179 English-speaking and 21 monolingual Spanish-speaking caregivers of persons with dementia. Repeat interviews were conducted with 71 caregivers. Administration time, scale score distributions, item-scale correlations, reliability, and associations of scales with patient and caregiver demographic and caregiving characteristics were estimated. Structure of associations among scales was examined using exploratory factor analysis.

Results

Item analysis yielded 80 items distributed across 10 scales, with median administration time of 17 minutes [IQR 13.5–22 minutes] and minimal missing data. There were few floor or ceiling effects in scale score distributions. Internal consistency reliability was ≥ 0.78 for all scales; test-retest reliability (intraclass correlation) estimates exceeded 0.70 for 6 scales. More hours weekly spent in caregiving was uniquely associated with worse quality of life on 8 scales (p's ≤ 0.05). Three higher-order dimensions of caregiving assistance, emotional and social concerns, and spirituality and benefits were identified.

Conclusion

These preliminary results support subsequent evaluation of test-retest reliability, construct validity, and responsiveness to change of this quality-of-life measure for caregivers from diverse ethnicities.