Caregiver Experience During Advanced Chronic Illness and Last Year of Life

Objectives To compare the prevalence and predictors of caregiver esteem and burden during two different stages of care recipients' illnesses—advanced chronic illness and the last year of life. Design Longitudinal, observational cohort study. Setting Community sample recruited from outpatient clinics at Duke University and Durham Veterans Affairs Medical Centers. Participants Individuals with advanced cancer, congestive heart failure, or chronic obstructive pulmonary disease and their primary caregiver, retrospectively coded as chronic‐illness (n = 62) or end‐of‐life (EOL; n = 62) care recipient–caregiver dyads. Measurements Caregiver experience was measured monthly using the Caregiver Reaction Assessment, which includes caregiver esteem and four domains of burden: schedule, health, family, and finances. Results During chronic illness and at the end of life, high caregiver esteem was almost universal (95%); more than 25% of the sample reported health, family, and financial burden. Schedule burden was the most prevalent form of burden; EOL caregivers (58%) experienced it more frequently than chronic‐illness caregivers (32%). Caregiver esteem and all dimensions of burden were relatively stable over 1 year. Few factors were associated with burden. Conclusion Caregiver experience is relatively stable over 1 year and similar in caregivers of individuals in the last year of life and those earlier in the course of chronic illness. Schedule burden stands out as most prevalent and variable among dimensions of experience. Because prevalence of burden is not specific to stage of illness and is relatively stable over time, multidisciplinary healthcare teams should assess caregiver burden and refer burdened caregivers to supportive resources early in the course of chronic illness.