title: Caring for Caregivers: Challenging the Assumptions.
abstract: 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.
authors.affiliation: Professor of Health Policy, Institute of Health Policy Management and Evaluation, University of Toronto.
authors.forename: A Paul
authors.initials: AP
authors.lastname: Williams
authors.affiliation: Candidate and Research Associate, Institute of Health Policy Management and Evaluation, University of Toronto.
authors.forename: Allie
authors.initials: A
authors.lastname: Peckham
authors.affiliation: Scientist, Lunenfeld-Tanenbaum Research Institute, and Assistant Professor, Institute of Health Policy, Management and Evaluation, University of Toronto.
authors.forename: Kerry
authors.initials: K
authors.lastname: Kuluski
authors.affiliation: Research and Graduate Studies, Faculty of Arts, and Professor, Department of Politics and Public Administration, Ryerson University, Toronto.
authors.forename: Janet
authors.initials: J
authors.lastname: Lum
authors.affiliation: PhD student and Research Associate, Institute of Health Policy Management and Evaluation, University of Toronto Project Coordinator at the Alzheimer Society of Toronto.
authors.forename: Natalie
authors.initials: N
authors.lastname: Warrick
authors.affiliation: Associate Professor and Director of the Masters of Nursing Program, Daphne Cockwell School of Nursing, Ryerson University, Toronto.
authors.forename: Karen
authors.initials: K
authors.lastname: Spalding
authors.affiliation: Research Analyst, Home Care & Long-Term Care, Health Quality Ontario, Toronto.
authors.forename: Tommy
authors.initials: T
authors.lastname: Tam
authors.affiliation: Director of Strategic Projects, Hospital for Sick Children, Toronto.
authors.forename: Cindy
authors.initials: C
authors.lastname: Bruce-Barrett
authors.affiliation: Executive Assistant, Hospital for Sick Children, Toronto.
authors.forename: Marta
authors.initials: M
authors.lastname: Grasic
authors.affiliation: Undergraduate Student, University of Toronto.
authors.forename: Jennifer
authors.initials: J
authors.lastname: Im
mesh_terms: D017028:Caregivers / Q000523:psychology* / Q000600:supply & distribution / Q000639:trends; D006291:Health Policy / Q000639:trends*; D006801:Humans; D008017:Life Expectancy / Q000639:trends*; D020380:Needs Assessment; D009864:Ontario; D012423:Rural Health; D012944:Social Support; D013315:Stress, Psychological / Q000209:etiology / Q000517:prevention & control*