As we enter year two of the COVID-19 pandemic, the medical community is scrambling to keep up with new COVID cases, while simultaneously trying to triage and learn as much as possible about long COVID cases. Clinicians, researchers, and volunteers have been working hard to document patients’ symptoms and timelines, seek patterns, and improve symptom management.

In a STAT News op-ed, Jennifer Olsen, CEO of the Rosalynn Carter Institute for Caregivers, reminds us all that caregivers are a rich source of relevant data and cautions providers not to overlook them.*

What caregivers can add to long COVID research

Caregivers can be spouses, children, parents, friends, or anyone who has been helping a COVID-19 long-hauler by:

• Closely monitoring the patient’s symptoms and changes 
• Managing their medical treatments and interventions
• Documenting the details of their adjustments to symptoms, from mild to disabling

Caregivers can help fill in data gaps regarding:

• When symptoms appeared, disappeared, and, in some cases, reappeared
• Health events that the patient may have thought were irrelevant and didn’t previously mention  
• Precautions, tips, and techniques that have proven to be helpful (or not) while providing care

Such information, writes Olsen, would add significant value to the growing body of knowledge about the burden of both acute and Long COVID, and the burden of caregiving overall. It could:

• Yield more accurate information about long-haulers
• Enable researchers to compare patients’ symptoms alongside those of their caregivers
• Increase understanding of caregivers’ roles and how caregiving impacts their health

Impact of caregiving on caregivers

While caregiving can be gratifying and rewarding in many ways, it can also place stress on every facet of a caregiver’s life, including:

• Income
• Physical and mental health
• Career advancement
• Place of residence
• Home environment and lifestyle
• Educational attainment
• Leisure activities and enrichment

Though much attention is rightfully focused on patients, investing in caregiver health and wellbeing has a twofold benefit:

• Improving patient care
• Preventing caregiver burnout, illness, and disability

Olsen suggests taking advantage of caregivers’ knowledge and experience by engaging them in dialogue and involving them in research from the patients’ first visit. Along with patient symptoms, clinicians can:

• Track the experience of caregivers alongside the people they are caring for
• Check for increased caregiver stress and its causes
• Monitor how caregivers maintain their health and whether they defer medical treatment for themselves
• Identify mental health disorders, such as depression and substance abuse, in the caregiver if/when they occur 

It’s important to note that research already shows that, during the pandemic, unpaid caregivers have been suffering three times more suicidal ideation and substance use than their non-caregiver peers.

Before the pandemic, there were 53 million unpaid caregivers in the U.S. alone. There are now likely several million more. As Olsen asserted, documenting and learning from even a fraction of these caregivers’ experiences could inform and benefit other patients, caregivers, and providers in myriad ways moving forward.

*Olsen, J. (2021, Feb. 18). Caregivers are Missing from the Long COVID Conversation. STAT News. 

https://www.statnews.com/2021/02/18/caregivers-missing-long-covid-convefocusedrsation/ 

Much about the novel coronavirus, i.e., COVID-19, is still not fully understood. As research progresses and our knowledge of the virus increases, information can change rapidly. We strive to update all of our articles as quickly as possible, but there may occasionally be some lag between scientific developments and our revisions.