The time it takes caregivers to navigate medical and social care systems may surprise many health policy analysts, but not caregivers

By Amélie Quesnel-Vallée
and Miles Taylor

The Canadian population is aging. For the first time, Canadians 65 years and over outnumber those 14 years 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 must rethink how we support the caregivers who make this possible.

My colleague and I argue we must begin by recognizing that the fragmentation of the health and social systems generates a substantial burden for caregivers. Yet this structural burden of caregiving often goes unrecognized by the system, not to mention caregivers.

Part of the reason is that research has mainly defined caregiving burden in terms of the time and stress it takes to 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?

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That part of the 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 only came to fully realize what this part of caregiving means to the caregiver when we began more actively providing care for our aging parents. We thought we knew what we were getting into.

We anticipated that providing direct care would be challenging and we knew what help to seek and where.

What we weren’t prepared for was how much time we would spend and stress we would experience trying to understand, negotiate and manage medical and social care for our loved ones.

Particularly surprising was that we both encountered this problem via two very different health systems: in Quebec and Florida. Of course, financial worries for health provision were much less prevalent in Quebec than 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).

Ultimately, we both struggled in remarkably similar ways with negotiating and managing discontinuous and fragmented care and services.

And despite the difficulties we encountered, we recognized that our positions, in terms of education, income and even profession, gave us more social currency and health-care literacy than most – and likely helped us gain information and access services. This realization left us concerned for the potential that this structural burden has for exacerbating social inequalities among patients and caregivers.

The market has already figured out this opportunity. Private services exist in both countries to assist caregivers navigating the system. This indicates there’s a real need and that shortcomings in the public sector are being fulfilled by the private sector, at the cost of equitable access.

So what can be done?

First, the structural burden of caregiving has to be included in health policy research and health reform.

For example, most surveys on caregiving only question how much time caregivers take feeding or bathing their care recipient, or providing other daily tasks such as taking out the trash.

We should increasingly ask how much time and stress is expended by caregivers negotiating with medical and social care systems, trying to figure out which services are available and when. The answer might surprise many health policy analysts – but it won’t surprise caregivers.

With these numbers in hand, we could advocate for support from governments to fund public navigator services. These services exist in certain areas, such as in cancer and palliative care, but they’re not widespread and readily available to individuals without such clear diagnoses and prognoses. In our experience, it would have made a world of difference to be able to rely on such support.

It’s also important that everyone understand the time and stress involved in managing care and negotiating services is also caregiving. It can be a substantial burden that should be acknowledged and recognized.

Because if we don’t care for the caregivers, who will?

Amélie Quesnel-Vallée is the Canada research chair on Policies and Health Inequalities and director of the Observatory on Health and Social Services Reforms at McGill University. Miles Taylor is associate professor of Sociology and faculty associate at the Pepper Institute on Aging and Public Policy at Florida State University and a Fellow of the Gerontological Society of America.

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