Unpaid Caregiver Costs in Canada: A Systematic Review

Abstract

As utilization of home care increases across Canada, questions are emerging concerning the extent to which home care expenses, many of which are not publicly covered, are borne by unpaid caregivers of home care recipients. In this systematic review, we review English-language literature published between 2001 and 2022 exploring the magnitude and sources of home care costs incurred by unpaid caregivers in Canada. Of particular interest were empirical, cost-of-illness studies that describe the implications of these costs across domains of financial risk, including caregivers’ income level, employment status, and personal health. Following the screening of 492 studies derived across 6 databases (OVID Medline, CINAHL, PsycINFO, AMED, EconLit, and EMBASE), 24 studies were included in this review. Overall, few studies describe how home care expenses incurred by unpaid caregivers contribute to their financial risk. While some studies characterize the direct costs of caregiving incurred by caregivers, including out-of-pocket expenditure on transportation to medical appointments, respite care, home renovations, supplemental housekeeping, and prescription medications, limited studies attempt to estimate the magnitude of these expenses. Concerning financial risk, the literature is chiefly concerned with indirect costs of caregiving, including consequences on caregivers’ employment (foregone wages). Findings from this literature review suggest further work is needed in Canadian context to document costs associated with unpaid home care provision.