Caregivers need more support to figure out health and social systems

It’s a fact: the Canadian population is aging. For the first time in history, Canadians 65 and over outnumber those 14 and under. To face this major demographic change head on, we need to adapt.In particular, to meet the preferences of the great majority of Canadians who want to age in the community, we will have to rethink how we support the caregivers that make this possible. In a recent journal article, my colleague and I argue we must begin by recognizing that the fragmentation of the health and social systems itself is generating a substantial amount of burden for caregivers. Yet this “structural burden” of caregiving often goes unrecognized by the system, not to mention caregivers themselves.Part of the reason is that research until now has mainly defined caregiving burden in terms of the amount of time and stress it takes to physically provide care to another person – helping with daily tasks and personal hygiene for instance.But what about the time spent negotiating health care systems, scheduling and getting to and from treatments, often in the middle of the day, figuring out which services will be covered and under which circumstances?Article Continued BelowThat part of the caregiving burden isn’t well-articulated, measured or understood. And it certainly isn’t often appreciated. As academics in the fields of aging and health services research, we fully came to realize what this part of caregiving means to the caregiver only when we began more actively providing care for our aging parents. We were not prepared for how much time and stress we would spend trying to understand, negotiate and manage medical and social care for our loved ones.What was particularly surprising was that we both encountered this problem via two very different health systems: one in Quebec and one in Florida. Of course, financial worries for health provision were much less prevalent in Quebec than in Florida, but they were not altogether absent, as the home and long-term care sector is very much privately financed in Quebec (and throughout Canada).