Abstract
BackgroundThe impact on informal caregivers of caring for people with Alzheimer's disease (AD) dementia can be substantial, but it remains unclear which measures(s) best assess such impact. Our objective was to use data from the GERAS study to assess the ability of the EuroQol 5-dimension questionnaire (EQ-5D) to measure the impact on caregivers of caring for people with AD dementia and to examine correlations between EQ-5D and caregiver burden.MethodsGERAS was a prospective, non-interventional cohort study in community-dwelling patients with AD dementia and their informal caregivers. The EQ-5D and Zarit Burden Interview (ZBI) were used to measure health-related quality of life and caregiver burden, respectively. Resource-use data collected included caregiver time spent with the patient on activities of daily living (ADL). Spearman correlations were computed between EQ-5D scores, ZBI scores, and time spent on instrumental ADL (T-IADL) at baseline, 18 months, and for 18-month change scores. T-IADL and ZBI change scores were summarized by EQ-5D domain change category (better/stable/worse).ResultsAt baseline, 1495 caregivers had mean EQ-5D index scores of 0.86, 0.85, and 0.82, and ZBI total scores of 24.6, 29.4, and 34.1 for patients with mild, moderate, and moderately severe/severe AD dementia, respectively. Change in T-IADL showed a stronger correlation with change in ZBI (0.12; P < 0.001) than with change in EQ-5D index score (0.02; P = 0.546) although both correlations were very weak. Worsening within EQ-5D domains was associated with increases in ZBI scores, although 68%–90% of caregivers remained stable within each EQ-5D domain. There was no clear pattern for change in T-IADL by change in EQ-5D domain.ConclusionsEQ-5D may not be the optimum measure of the impact of caring for people with AD dementia due to its focus on physical health. Alternative measures need further investigation.
Highlights
The impact on informal caregivers of caring for people with Alzheimer's disease (AD) dementia can be substantial, but it remains unclear which measures(s) best assess such impact
Caregiver burden has been associated with AD dementia severity: caregivers feel more burdened as AD dementia severity increases [6], there are some differences between spousal and adult-child caregivers in perceived burden measured using the Zarit Burden Interview (ZBI) [7]
When the EuroQol 5-dimension questionnaire (EQ-5D) was analyzed at the domain level, caregivers who experienced a worsening in health-related quality of life (HRQoL) domain score over 18 months had a greater increase in mean ZBI total score than caregivers whose HRQoL domain score remained stable or improved
Summary
The impact on informal caregivers of caring for people with Alzheimer's disease (AD) dementia can be substantial, but it remains unclear which measures(s) best assess such impact. Our objective was to use data from the GERAS study to assess the ability of the EuroQol 5-dimension questionnaire (EQ-5D) to measure the impact on caregivers of caring for people with AD dementia and to examine correlations between EQ-5D and caregiver burden. Two European studies found poor associations between caregiver and patient HRQoL [10, 11] as assessed using the EuroQol-5 dimension questionnaire (EQ-5D), a recognized generic instrument for measuring HRQoL which elicits a utility value (index score) [4]. Patient EQ-5D scores decreased with increasing AD dementia severity, but caregiver EQ-5D scores did not vary by patient disease severity [10, 11] These findings contradict those from other studies (e.g., [3]) and raise the question of whether caregiver EQ-5D is able to accurately reflect utility/disutility in AD dementia
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