When two researchers in Canada and the United States compared their experiences as caregivers, both were surprised by the “substantial burden of negotiating and managing long term care (LTC) services,” despite being in different health and social care systems. Based on their experiences and the available literature, they examined the features that characterize the structural burden of caregiving and propose that these structural burdens from interacting with health care and social systems be taken into account as caregiving policies are considered.
It is assumed that caregiving demands arise primarily from tasks related to care recipients’ daily needs. Instead, the authors argue that “substantial and increasing proportion of caregiver stress” comes from managing and negotiating services for care recipients within both countries’ formal health and social care systems.
The authors note that in both countries, where LTC services are covered, they are often in different “silos of care” such as hospitals, inpatient rehabilitation, and the home. They note that there is often little coordination across these care settings. This fragmentation adds to the caregiver burden in terms of the work and time required to access, coordinate, and manage medical and social care across multiple contexts. In the United States, this was complicated by the process of determining what was and was not covered by Medicare.
The time demands of navigating multiple systems with which they are unfamiliar may be especially difficult for unpaid, informal caregivers who may have other employment. The authors estimated that depending on the phase of the caregiving process they were in, the time demands made up between 15 and 50 percent of their caregiving time.
The authors also noted how this structural burden of caregiving “exacerbates inequity for both caregivers and recipients.” Less educated and inexperienced caregivers are at a disadvantage in terms of the time it takes to navigate health and social care systems, and the likelihood that they may not receive all of the support services to which they or the care recipient may be eligible.
In conclusion, the authors hope that by bringing light to these overlooked issues, caregiving policy can be reformed to reduce this structural burden and the inequities it produces.