Media reports describe the inarguable, if inconvenient, circumstances that follow us into the second year of the Covid-19 pandemic: In addition to hundreds of thousands of Americans killed by the disease, thousands of those who have “recovered” develop long Covid, a syndrome marked by symptoms such as cough, head and body aches, fatigue, loss of taste and smell, and “brain fog” that can linger — or disappear and reappear — for months after the main symptoms of Covid-19 fade away. It can occur even in those with initially mild cases of Covid-19.
An early estimate suggests that up to 10% of those who recover from Covid-19 could be so-called long-haulers who require ongoing care for their persistent symptoms.
The U.S. health system and infrastructure are too overwhelmed responding to essential needs to consider the broader implications — and opportunities — of long Covid. But one promising asset is not yet being deployed in the battle against Covid-19: long-haulers’ caregivers. Spouses, children, parents, and friends are closely monitoring long-haulers symptoms and changes, managing medical treatment and intervention, and documenting the details as their loved ones live with a litany of symptoms, some slight, some disabling.
Caregivers are the ones who can report on the lasting loss of smell or slight cough, who would mention the mild fever that appeared a week after a negative test. They can provide information essential to understanding this enigmatic syndrome.
In addition to studying long-haulers, researchers should be studying their caregivers. Such work would have the potential for a triple impact. Not only would questioning caregivers yield more accurate information about long-haulers, it also could create greater understanding about the disease itself by allowing researchers to compare the sequelae of long-haulers side by side with those of their caregivers, who most likely were also exposed to the coronavirus but had a different experience of the disease. A third far-reaching impact of including caregivers in Covid-19 research is what will be learned about caregivers themselves, whose experiences are largely misunderstood.
Being a caregiver can have a dramatic influence on an individual’s health and well-being — as much as factors such as income, educational attainment, and place of residence, the so-called social determinants of health that public health experts study exhaustively. By comparison, there’s only nominal investment in caregiver health and well-being.
The pandemic presents a unique opportunity. It is rarely possible to remove other social determinants from the equation and directly assess how caregiving affects well-being. But because of the episodic nature of long Covid, that may now be possible.
Longitudinal studies can track the experience of caregivers alongside their care recipients; check for increased caregiver stress along with its causes; monitor how caregivers maintain their own health and whether they defer medical treatment; or identify mental health disorders such as depression and substance abuse in the caregiver if and when they emerge.
Before the pandemic emerged, 53 million people were serving as unpaid caregivers in the United States alone, providing a range of care usually to family members or friends. If 10% of Covid-19 cases linger and morph into long Covid, there may be 2.7 million (as I write this) more people serving as caregivers. Capturing the experience of even a fraction of these caregivers could inform population health for decades to come, as whatever we learn about long-hauler caregivers will bear fruit for the millions caring for loved ones with physical disabilities, dementia, and other chronic diseases.
To do so will take governmental and corporate leadership. The National Institutes of Health has launched longitudinal studies around the effects of Covid-19 exposure. These, along with other government studies to come, could be expanded to assess the long-term effects of Covid-19 on family caregivers. Given the potential decadeslong support that caregivers provide, it would be a missed opportunity to not think about ways to maximize this research investment.
In addition, long-hauler clinics should engage and support caregivers from the patient’s first visit. Studies of long Covid should collect information from caregivers as well as from patients, ensuring that all symptoms, even the mildest, are studied.
Across the board, Americans’ mental health has been affected by the pandemic, but the Centers for Disease Control and Prevention has reported that unpaid caregivers are suffering three times the suicidal ideation and substance use as their non-caregiving peers during the pandemic. We are likely to see a similar effect on long-haul caregivers over time.
As wretched and deadly as acute cases of the virus can be, long Covid can be both debilitating and terribly discouraging as it continues interminably. Our efforts to treat or cure this post-viral syndrome are currently limited, but one day we will wish we had learned all we could have learned during this time, including what we can from long-haulers’ caregivers.
Jennifer Olsen is the chief executive officer of the Rosalynn Carter Institute for Caregivers.