Abstract
BackgroundProviding 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.Methods91 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.ResultsItem 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.ConclusionThese 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.
Highlights
Providing care for individuals with a progressive, debilitating condition such as dementia can adversely impact the quality of life (QOL) of informal caregivers
We found that with one exception, published studies of dementia caregiver quality of life had used generic quality-of-life measures or targeted narrower constructs of burden or depression
Measures A field test set of 91 items assessing aspects of caregiver quality of life was generated based on analysis of data from focus groups of caregivers from diverse ethnic groups in the southern California area [19]
Summary
Providing care for individuals with a progressive, debilitating condition such as dementia can adversely impact the quality of life (QOL) of informal caregivers. 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. Providing care for individuals with a progressive, debilitating condition such as dementia can adversely impact the quality of life (QOL) of informal caregivers in many ways. Studies to assess the impact of new treatments or new ways of delivering care for people with dementia should incorporate instruments that very broadly address domains of health-related quality of life, and non health-related quality of life, because these dimensions (for example, perceptions of family involvement in caregiving, caregiver's perceptions of having personal time away from caregiving) likely affect outcomes relevant to patients such as time to institutionalization. The only exception is a measure developed by the PIXEL study group [3]
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