Caregivers are missing from the long Covid conversation

MThe edia reports describe the compelling, albeit impractical, circumstances that follow us into the second year of the Covid-19 pandemic: in addition to the hundreds of thousands of Americans killed by the disease, thousands of those who are are “recovered” develop Covid for a long time, a syndrome marked by symptoms such as cough, body aches and headaches, fatigue, loss of taste and smell and “brain fog” that can persist – or disappear and reappear – for months after the main symptoms of Covid-19 have subsided. This can occur even in people with initially mild cases of Covid-19.

An early estimate suggests that as many as 10% of those recovering from Covid-19 could be so-called long-haul travelers who need continued care for their lingering symptoms.

The US healthcare system and infrastructure are too overwhelmed to meet basic needs to consider the broader implications – and opportunities – of a long Covid. But a promising asset is not yet deployed in the battle against Covid-19: long-haul caregivers. Spouses, children, parents and friends closely monitor long-haul symptoms and changes, manage medical treatment and intervention, and document details as their loved ones live with a litany of symptoms, some mild, other disabling.

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Caregivers are the ones who can report the lasting loss of smell or a mild cough, who mention the mild fever that started a week after a negative test. They can provide information essential to understanding this enigmatic syndrome.

In addition to studying long haul, researchers should study their caregivers. Such work could have a triple impact. Not only would interviewing caregivers provide more accurate information about long-haul trips, it could also create a better understanding of the disease itself by allowing researchers to compare the after-effects of long-haul trips side-by-side with those of their caregivers, who have most likely also been exposed. 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 poorly understood.

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Being a caregiver can have a dramatic influence on a person’s health and well-being – as much as factors such as income, level of education and location of residence, the so-called social determinants of health as public health experts study it comprehensively. In comparison, there is only a nominal investment in the health and well-being of caregivers.

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 due to the episodic nature of the long Covid, this may now be possible.

Longitudinal studies can follow the experience of caregivers alongside their care recipients; check the increased stress of caregivers and its causes; monitor how caregivers maintain their own health and whether they delay medical treatment; or identify mental health disorders such as depression and substance abuse in the caregiver if and when they appear.

Prior to the emergence of the pandemic, 53 million people worked as unpaid caregivers in the United States alone, providing a range of care typically to family members or friends. If 10% of Covid-19 cases persist and develop into Long Covid, there could be 2.7 million (as of this writing) more people serving as caregivers. Capturing the experience of even a fraction of these caregivers could inform the health of the population for decades to come, as everything we learn about caregivers will pay off for the millions of caregivers. loved ones with physical disabilities, dementia and other chronic illnesses.

To do so will require government and corporate leadership. The National Institutes of Health have launched longitudinal studies on the effects of exposure to Covid-19. These, along with other upcoming government studies, could be extended to assess the long-term effects of Covid-19 on caregivers. Given the potential support that caregivers provide for decades, it would be a missed opportunity not to think about ways to maximize this investment in research.

Additionally, long-haul clinics should engage and support caregivers from the patient’s first visit. Long-term Covid studies should collect information from caregivers as well as patients, ensuring that all symptoms, even the mildest, are investigated.

Overall, the mental health of Americans has been affected by the pandemic, but the Centers for Disease Control and Prevention has reported that unpaid caregivers suffer three times more from suicidal ideation and substance use than their non-helping peers. during the pandemic. We will likely see a similar effect on informal caregivers over time.

As miserable and deadly as acute cases of the virus can be, a long Covid can be both debilitating and terribly disheartening as it goes on and on. Our efforts to treat or cure this post-viral syndrome are currently limited, but one day we wish we had learned everything we could have learned during this time, including what we can from long-haul caregivers.

Jennifer Olsen is the Executive Director of the Rosalynn Carter Institute for Caregivers.