Caring for Caregivers: Facing up to Tough Challenges

This paper, the first in a series of three, sets the stage for two accompanying papers detailing a pair of groundbreaking initiatives to support “at risk” caregivers of high-needs older persons and children in Toronto. Although caregiver burden and stress are often conceptualized primarily as a function of the needs of cared-for persons and the capacity of caregivers, fragmented formal care systems also play a key role. Solutions must take individual-level and systemlevel factors into account; clarify expectations about what we expect unpaid caregivers to do; redefine the unit of care to include caregivers; and think beyond short-term fixes to mechanisms, such as interdisciplinary teams and integrated care plans, that promote forward planning, accountability, best practices and crisis avoidance. This short paper sets the stage for two longer papers detailing a pair of ground-breaking caregiver support initiatives in Toronto: one for “at risk” caregivers of high-needs older persons (Warrick et al.) and the other for “at risk” caregivers of children with complex medical needs (Peckham et al.). In addition to providing insight into these specific initiatives, we believe the articles offer valuable intelligence about the conceptualization and design of caregiver supports more generally. Most importantly, caregiver support initiatives do not exist in a vacuum; they take place at the permeable interface between informal and formal care. While caregiver burden, stress, resilience and willingness to continue to care are often characterized primarily as a function of the needs of cared-for persons (with higher needs resulting in higher levels of caregiver burden and stress), and/or the characteristics of caregivers themselves (with better resourced caregivers more able to manage caregiving activities), formal care systems play a key role (Coon 2012; Kemp et al. 2013). Other things being equal, where formal systems are better able to provide a range of needed health and social supports to cared-for persons on a coordinated, predictable basis, informal caregivers are more likely to be able to continue to care; however, where formal systems are fragmented, difficult to navigate and unreliable, caregiver burden, stress and the likelihood of burnout are magnified (Chou 2000; Dybwik et al. 2003). This is especially true for caregivers of older persons and children with multiple chronic needs requiring multiple services from multiple providers over extended periods; in the case of children, often over the course of a lifetime. The two Toronto initiatives accordingly respond at individual and system levels. In addition to providing caregivers (and caredfor persons) a tailored mix of cash and supplies, they employ specially trained care coordinators (“Key Workers” in the case SPECIAL FOCUS ON FAMILY CAREGIVING