Caring for Caregivers: Challenging the Assumptions.

Informal and mostly unpaid caregivers - spouses, family, friends and neighbours - play a crucial role in supporting the health, well-being, functional independence and quality of life of growing numbers of persons of all ages who cannot manage on their own. Yet, informal caregiving is in decline; falling rates of engagement in caregiving are compounded by a shrinking caregiver pool. How should policymakers respond? In this paper, we draw on a growing international literature, along with findings from community-based studies conducted by our team across Ontario, to highlight six common assumptions about informal caregivers and what can be done to support them. These include the assumption that caregivers will be there to take on an increasing responsibility; that caregiving is only about an aging population; that money alone can do the job; that policymakers can simply wait and see; that front-line care professionals should be left to fill the policy void; and that caregivers should be addressed apart from cared-for persons and formal care systems. While each assumption has a different focus, all challenge policymakers to view caregivers as key players in massive social and political change, and to respond accordingly.

Caring for caregivers of high-needs children.

The Caregiver Framework for Children with Medical Complexity, led by the Hospital for Sick Children, is a ground-breaking initiative that validates and supports the vital role of unpaid, family caregivers. The project uses a supported self-management model that includes a modest amount of funding to address pressing needs, and relies on Key Workers who provide ongoing education, counselling and care management to assist caregivers in planning over the longer-term. This paper describes the findings from a multi-stage, mixed-methods evaluation to examine the design and outcomes of the Caregiver Framework.