Burden in caregivers of older adults with advanced illness

Abstract

Objectives: To examine caregiver burden over time in caregivers of patients with advanced chronic disease.

Design: Observational cohort with interviews over 12 months.

Setting: Community.

Participants: Caregivers of 179 community-living persons aged 60 and older with advanced cancer, heart failure (HF), or chronic obstructive pulmonary disease (COPD).

Measurements: Caregiver burden was assessed using a short-form of the Zarit Burden Inventory to measure psychosocial distress.

Results: At baseline, the median caregiver burden was 5 (interquartile range (IQR) 1-11), which indicates that the caregiver endorsed having at least two of 10 distressing concerns at least some of the time. Only 10% reported no burden. Although scores increased modestly over time, the association between time and burden was not significant in longitudinal multivariable analysis. High burden was associated with caregiver need for more help with daily tasks (odds ratio (OR)=23.13, 95% confidence interval (CI)=5.94-90.06) and desire for greater communication with the patient (OR=2.53, 95% CI=1.16-5.53). The longitudinal multivariable analysis did not yield evidence of associations between burden and patient sociodemographic or health characteristics.

Conclusion: Caregiver burden was common in caregivers of patients with cancer, HF, and COPD. High burden was associated with the caregiver's report of need for greater help with daily tasks but not with objective measures of the patient's need for assistance, such as symptoms or functional status, suggesting that burden may be a measure of the caregiver's ability to adapt to the caregiving role.

Figure 1. Longitudinal Description of Caregiver Burden by Patient Diagnosis

The figure shows the median caregiver burden score and interquartile range measured at baseline (time 0), 4 month, 8 month, and 12 month follow up. Caregiver burden was assessed during an in person interview with the caregiver using a 10 item short-form of the Zarit Burden Inventory scored on a 5 point Likert scale with total scores ranging from 1 – 40. The total sample size at base line was 179 caregivers (cancer 68, COPD 64, HF 47), 4 months was 165 (cancer 54, COPD 63, HF 48), 8 months was 137 (cancer 41, COPD 57, HF 39) and 12 months was 113 (cancer 27, COPD 51, HF 35).