Caregivers Are Still Waiting on COVID-19 Vaccines

Since the beginning of the COVID-19 vaccine rollout, prioritization of different at-risk groups has varied widely at the state level.

Among those currently receiving prioritization are healthcare workers, essential emergency and safety personnel, nursing home residents, older adults, teachers, and individuals with preexisting conditions. But caregivers—the unpaid family members who take care of elderly or disabled relatives— are advocating to be included in this prioritization.

At the start of vaccine rollout, the Centers for Disease Control and Prevention (CDC) created a system of phases for distribution to ensure vaccines went to high-risk groups. However, family caregivers were not included in the CDC’s guidelines. Many say this oversight leaves them still at risk for getting ill themselves, being unable to continue caregiving, or spreading the virus to those that are vulnerable and in their care.

How Prevalent Is Caregiving?

Many thousands of people in the United States are caregivers for a family member, Katherine Ornstein, PhD, associate professor of geriatrics and palliative medicine at the Icahn Mount Sinai School of Medicine in New York, tells Verywell.

More than one in five people in the U.S. are unpaid caregivers to an adult or child, according to a 2020 report from the AARP Public Policy Institute. Twenty-four percent are caring for more than one person, and 23% say that their caregiving has been detrimental to their own health.

But unless these caregivers fit into one of the prioritized categories—such as being over 65 or having a preexisting condition—they must wait until vaccine eligibility continues to open up.

Although the Biden Administration announced that every adult in the U.S. will be made eligible for COVID-19 vaccination by May 1, this still leaves many caregivers left waiting weeks or months for their shot.

Ultimately, how to prioritize who gets the vaccine has been difficult, Amber D’Souza, PhD, professor of epidemiology at the Bloomberg Johns Hopkins School of Public Health, tells Verywell. “Caregivers are a critical group, as are many other groups, and the decisions of how to best prioritize are really challenging,” D’Souza says.

Prioritizing Caregivers

A few states are giving priority to family caregivers for vaccinations, according to Ornstein, including Oregon and North Carolina. But not every state is following suit.

Caregivers shoulder a large load that could potentially fall on nursing homes and hospitals if they were to get sick with COVID-19. They help their loved ones with daily activities such as dressing, washing, assistance in the bathroom, and feeding, as well as monitoring their medications or administering them. “If a caregiver gets sick, what happens to the patient, or to multiple patients that they are caring for?” she asks.

The simplest solution, Ornstein says, would be offering caregivers a vaccine when they bring their loved one to get vaccinated.

Some states have adopted this approach. Massachusetts created a system allowing for adults 75 and older to bring a caregiver or companion to receive the vaccine on the same day of their appointment. But shortly after, individuals attempted to jump the priority line by advertising driving services on Craigslist for elderly adults that needed rides.

Ornstein says that it wasn’t unexpected that some people might try to game the system. Even if there is a risk of people trying to jump the line, it should be as easy as possible for caregivers to receive vaccination along with their loved ones. Requiring proof of a caregiving relationship, such as a doctor’s letter, would only create barriers. “I think it’s really critical that we create a system that’s simple,” she says.

Robert Quigley, MD, DPhil, senior vice president and global medical director for International SOS—a company that is working to help industries and companies return to work safely—agrees that family caregivers should be prioritized.

“There are some states which are recognizing that and putting them to the front of the queue,” he tells Verywell. “But it’s not ubiquitous and I’m surprised it’s not ubiquitous. They should all be lumped into the same category as healthcare professionals.” Caregivers are just as vulnerable to the virus as anyone, and as likely to infect the family member they support, he adds.

Despite performing important work, caregivers get little or no support from the healthcare system, Ornstein says. Caregivers were already emotionally, physically, and financially stressed before the pandemic.

“I think it’s actually really important to prioritize them [caregivers] and treat them as the healthcare workers they are,” Ornstein says. “We are relying on them. If we’re prioritizing caring for the most vulnerable, we have to consider who’s caring for them.”

Everyone Will Soon Be Eligible

Ornstein notes that some states have programs that help family caregivers because they provide these essential services at no charge. The Department of Veterans Affairs is providing COVID-19 vaccinations to designated caregivers who participate in its Program of Comprehensive Assistance for Family Caregivers, she noted. The program is part of a larger VA Caregiver Support program that offers a monthly stipend, mental health counseling, and respite care to family caregivers if the veteran meets certain eligibility criteria.

Even though it may be stressful for caregivers waiting on vaccinations, the situation could be moot within a few weeks or months, Ornstein adds. Supplies of the three authorized vaccines are increasing. The Biden Administration is aiming to expand eligibility by May 1, so “everyone should be indicated as eligible, meaning that these questions right now of prioritization will only be for a few more months,” D’Souza says.

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