Pandemic-related shutdowns opened up plenty of worries for Jane Levy. At her Chapel Hill, N.C., home, the 80-year-old cares for her 79-year-old husband, who, in the past 16 years, has experienced a heart transplant, lymphoma and, most recently, advanced stage prostate cancer.
“The first worry was the fact that he is immunocompromised, so he’s very high risk for the virus,” Levy said. Taking him to the doctor for critical treatments, she feared potential exposure to the coronavirus for both of them. “It would be a disaster,” she said, if they got sick.
But, as Levy fretted over their health, she also was cut off from her regular activities, including a weekly breakfast gathering with three other couples. Caregiving, she said, is already lonely; the pandemic has made it worse.
The COVID-19 pandemic has underscored the challenges among America’s family caregivers, according to a recent paper, “The Family Caregiving Crisis Meets an Actual Pandemic,” published in the Journal of Pain and Symptom Management.
“The pandemic, itself, has laid bare the fact that caregivers are often care adjacent.”
As Levy has experienced, routine trips to the doctor present misgivings about safety and well-being. Social distancing makes it difficult — sometimes impossible — to check in on aging family members who live on their own, or to meet with friends. And even before the pandemic triggered an economic crisis, many caregivers reported financial strain.
Health care professionals, the authors write, must recognize and work with these essential, but unpaid and informal health care workers.
“The pandemic, itself, has laid bare the fact that caregivers are often care-adjacent,” said Erin Kent, one of the paper’s authors who also is an associate professor in the Department of Health Policy and Management at UNC-Chapel Hill’s Gillings School of Global Public Health. “They themselves are there in the middle of the fray of a health crisis or management of a chronic disease. But in this country, there often is no way to formally recognize them.”
Caregivers ‘At The Sidelines’
Caregivers in the United States now number 53 million, according to the newly released 2020 Caregiving in the U.S. report, up from 43.5 million just five years ago. About 78% of those caregivers, some 41.8 million, are providing care to adults age 50 and up, says the report from AARP and the National Alliance for Caregiving.
They often spend hours a day delivering essential health care services — ensuring their loved one gets the required medication, makes it to appointments and stays safe at home. Often, they sit in during doctor’s visits, taking notes about their loved one’s care.
The pandemic, however, has upended many of those routines. New protocols to prevent the transmission of the coronavirus, for example, limit who can visit hospitals, clinics and assisted living centers.
“Now that [health care] providers are saying, ‘No, we’ve got to carefully control who comes in and out,’ that means a lot of caregivers are at the sidelines, even though they’ve been part of the care team,” said C. Grace Whiting, president and CEO of the National Alliance for Caregiving.
When they aren’t in the room, they can’t offer up observations about how a treatment is working, report on their loved one’s compliance with the doctor’s recommendations and share other details that are critical to a patient’s care.
“We need to be elevating that role,” Kent said. “But in order to play that role effectively, [caregivers] need support. They need preparation. They need training. They need communication. And they need a way to get in touch with somebody if their patient takes a turn or they have questions or they themselves are suffering.”
6 Ways Health Care Professionals Can Support Family Caregivers
The paper Kent co-authored offers six ways health care professionals can do just that. Here’s how:
1. Consider family caregivers “essential front line health workers” and help them secure face masks and other personal safety gear and teach them how to properly use it. “These people really need to be protected, and they need to be protected to ensure their care recipients aren’t exposed,” Kent said. At the same time, health care providers also can let the caregivers know about options like grocery and medication delivery that limit their exposure to the coronavirus.
2. Use assessments and checklists to determine how well a caregiver can tend to their loved one at home, especially as some choose to pull people from nursing homes where there’s been a high rate of COVID-19-related deaths across the country. “Making sure there isn’t just an assumption that, ‘OK, there is a caregiver, and everything is set,’” Kent said. “It’s important that there is a dialogue between health care providers and families.”
3. Expand the use of telehealth to treat patients and be aware that some family caregivers are no longer in the same place as their loved ones. Three-way calls between the patient, caregiver and doctor should be explored, the authors recommend.
In other cases, during a call with the doctor, the patient could simply dial their caregiver with their own phone and hold it up to the video screen, so everybody can be part of the conversation. Kent counsels flexibility. “This could be one of the success stories or silver linings of this pandemic,” she said. “It’s getting almost everyone on board with more virtual communication and virtual medicine where it can be done.”
4. Encourage individuals to get their papers in order, including directives that will steer their care if they can’t make decisions for themselves. “I hope that’s another silver lining — that we need to be able to have those crucial conversations,” Kent said. “This is a reminder to not just be able to be in touch with our own wishes for ourselves, but to have it on paper and documented, so that if and when the time comes, that’s taken care of.”
5. Thank caregivers for their work, especially during these challenging times, and acknowledge the extraordinary circumstances we’re all facing. Encourage them to lean on family members, the paper says. While some supports, such as adult day care and home care, may be closed or canceled, focus on what can be done, instead of what can’t be done, it notes.
6. Seek out information from caregiving organizations such as the Family Caregiver Alliance, National Alliance for Caregiving and community groups for guidance and resources and share it with those in need.
Levy is finding the resources she needs — thanks to a recent conversation with a social worker who is part of the practice treating her husband. She helped connect Levy to a support group that’s meeting virtually during the pandemic.
“It can be isolating, but it doesn’t have to be isolating,” Kent said. “There are information and resources out there.”
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