Challenges navigating publicly funded home care in Ontario, Canada: Perspectives from unpaid caregivers of persons living with dementia

Abstract

In Canada, persons living with dementia represent a sizable number of home care recipients. Although home care is not wholly publicly funded under provincial health insurance plans, some provinces like Ontario subsidize a maximum number of hours of home care provided by a personal support worker (PSW) on the basis of need. The public subsidization of home care may be interpreted as a mechanism of financial risk protection, enabling unpaid caregivers to maintain employment, income levels, and personal health. However, deficits in the availability of home care call into question how the organization of home care may be contributing to financial risk among unpaid caregivers. Inspired by qualitative phenomenology, this study describes the financial risks experienced by unpaid caregivers of persons living with dementia navigating publicly funded homecare in Ontario. Based on 24 interviews conducted between August-December, 2020, we found financial risk emerges across three dimensions: 1) receiving information about publicly funded home care that anticipates future care needs; 2) receiving flexible hours of support from a PSW; and 3) maintaining consistent access to quality support. Financial risks included turning to privately funded home care options, or taking time off work to provide care. Findings may inform local and international home care reforms aiming to protect caregivers from financial risk.