MThe edia reports describe the indisputable, albeit inconvenient, circumstances that follow us through the second year of the Covid-19 pandemic: In addition to hundreds of thousands of Americans killed by the disease, thousands of those who “recovered” developed long Covid, a syndrome marked by symptoms such as coughing, headaches and body aches, fatigue, loss of taste and smell and “brain fog” that can last – or disappear and reappear – for months after the main symptoms of Covid-19 disappear. It can occur even in patients with initially mild cases of Covid-19.
An initial estimate suggests that up to 10% of people who recover from Covid-19 may be so-called long-haulers, who require continuous care for their persistent symptoms.
The health care and infrastructure of the United States is overburdened in response to the essential needs to consider the broader implications – and opportunities – of the long Covid. But a promising asset is not yet being deployed in the battle against Covid-19: long-distance caregivers. Spouses, children, parents and friends are closely monitoring the symptoms and changes of long-haulers, managing treatment and medical intervention and documenting the details, as their loved ones live with a litany of symptoms, some mild, others disabling.
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Caregivers are those who can report lasting loss of smell or mild cough, who would mention the mild fever that appeared a week after the negative test. They can provide essential information for understanding this enigmatic syndrome.
In addition to studying long-haulers, researchers should study their caregivers. Such work would have the potential for a triple impact. Questioning caregivers would not only produce more accurate information about long-haulers, but could also create a greater understanding of the disease itself, allowing researchers to compare the sequelae of long-haulers side by side with those of their caregivers, who are likely to also were exposed to coronavirus, but had a different experience of the disease. A third far-reaching impact of including caregivers in Covid-19’s research is what will be learned about caregivers themselves, whose experiences are widely misunderstood.
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Being a caregiver can have a dramatic influence on an individual’s health and well-being – as well as factors such as income, education and place of residence, the so-called social determinants of health that public health experts study extensively. In comparison, there is only a nominal investment in the caregiver’s 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 care affects well-being. But, due to Covid’s long episodic nature, this may now be possible.
Longitudinal studies can track the experience of caregivers alongside their recipients; check for increased caregiver stress along with its causes; monitor how caregivers maintain their own health and whether they postpone medical treatment; or identify mental health disorders, such as depression and substance abuse in the caregiver, if and when they arise.
Before the emergence of the pandemic, 53 million people served as unpaid caregivers in the United States alone, providing a variety of care generally for family members or friends. If 10% of Covid-19 cases remain and turn into Covid Long, there may be 2.7 million (as I write this) of more people serving as caregivers. Capturing the experience of even a fraction of these caregivers can inform the health of the population in the coming decades, as everything we learn about long-distance caregivers will bear fruit for the millions who care for their loved ones with physical disabilities, dementia and other chronic illnesses .
This will require government and corporate leadership. The National Institutes of Health has launched longitudinal studies on the effects of exposure to Covid-19. These, along with other government studies to come, can be expanded to assess the long-term effects of Covid-19 on family caregivers. Given the potential decades-long support that caregivers provide, it would be a missed opportunity not to think of ways to maximize this investment in research.
In addition, long-distance clinics must involve and support caregivers from the patient’s first visit. Covid Long studies should collect information from caregivers and also patients, ensuring that all symptoms, even the slightest ones, are studied.
In general, Americans’ mental health was affected by the pandemic, but the Centers for Disease Control and Prevention reported that unpaid caregivers are suffering three times more suicidal ideation and substance use than their non-caregiver peers during the pandemic. We are likely to see a similar effect in long-distance caregivers over time.
As miserable and deadly as the acute cases of the virus may be, Covid Long can be both debilitating and terribly discouraging as it continues endlessly. 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 that time, including what we can do with long distance caregivers.
Jennifer Olsen is executive director of the Rosalynn Carter Institute for Caregivers.