Navigating Aging

Family Caregivers, Routinely Left Off Vaccine Lists, Worry What Would Happen ‘If I Get Sick’

Robin Davidson entered the lobby of Houston Methodist Hospital, where her 89-year-old father, Joe, was being treated for a flare-up of congestive heart failure.

Before her stretched a line of people waiting to get covid-19 vaccines. “It was agonizing to know that I couldn’t get in that line,” said Davidson, 50, who is devoted to her father and usually cares for him full time. “If I get sick, what would happen to him?”

Tens of thousands of middle-aged sons and daughters caring for older relatives with serious ailments but too young to qualify for a vaccine themselves are similarly terrified of becoming ill and wondering when they can get protected against the coronavirus.

Like aides and other workers in nursing homes, these family caregivers routinely administer medications, monitor blood pressure, cook, clean and help relatives wash, get dressed and use the toilet, among many other responsibilities. But they do so in apartments and houses, not in long-term care institutions — and they’re not paid.

“In all but name, they’re essential health care workers, taking care of patients who are very sick, many of whom are completely reliant upon them, some of whom are dying,” said Katherine Ornstein, a caregiving expert and associate professor of geriatrics and palliative medicine at Mount Sinai’s medical school in New York City. “Yet, we don’t recognize or support them as such, and that’s a tragedy.”

The distinction is critically important because health care workers have been prioritized to get covid vaccines, along with vulnerable older adults in nursing homes and assisted living facilities. But family members caring for equally vulnerable seniors living in the community are grouped with the general population in most states and may not get vaccines for months.

The exception: Older caregivers can qualify for vaccines by virtue of their age as states approve vaccines for adults ages 65, 70 or 75 and above. A few states have moved family caregivers into phase 1a of their vaccine rollouts, the top priority tier. Notably, South Carolina has done so for families caring for medically fragile children, and Illinois has given that designation to families caring for relatives of all ages with significant disabilities.

Arizona is also trying to accommodate caregivers who accompany older residents to vaccination sites, Dr. Cara Christ, director of the state’s Department of Health Services, said Monday during a Zoom briefing for President Joe Biden. Comprehensive data about which states are granting priority status to family caregivers is not available.

Meanwhile, the Department of Veterans Affairs recently announced plans to offer vaccines to people participating in its Program of Comprehensive Assistance for Family Caregivers. That initiative gives financial stipends to family members caring for veterans with serious injuries; 21,612 veterans are enrolled, including 2,310 age 65 or older, according to the VA. Family members can be vaccinated when the veterans they look after become eligible, a spokesperson said.

“The current pandemic has amplified the importance of our caregivers whom we recognize as valuable members of Veterans’ health care teams,” Dr. Richard Stone, VA acting undersecretary for health, said in the announcement.

An estimated 53 million Americans are caregivers, according to a 2020 report. Nearly one-third spend 21 hours or more each week helping older adults and people with disabilities with personal care, household tasks and nursing-style care (giving injections, tending wounds, administering oxygen and more). An estimated 40% are providing high-intensity care, a measure of complicated, time-consuming caregiving demands.

This is the group that should be getting vaccines, not caregivers who live at a distance or who don’t provide direct, hands-on care, said Carol Levine, a senior fellow and former director of the Families and Health Care Project at the United Hospital Fund in New York City.

Rosanne Corcoran, 53, is among them. Her 92-year-old mother, Rose, who has advanced dementia, lives with Corcoran and her family in Collegeville, Pennsylvania, on the second floor of their house. She hasn’t come down the stairs in three years.

“I wouldn’t be able to take her somewhere to get the vaccine. She doesn’t have any stamina,” said Corcoran, who arranges for doctors to make house calls when her mother needs attention. When she called their medical practice recently, an administrator said they didn’t have access to the vaccines.

Corcoran said she “does everything for her mother,” including bathing her, dressing her, feeding her, giving her medications, monitoring her medical needs and responding to her emotional needs. Before the pandemic, a companion came for five hours a day, offering some relief. But last March, Corcoran let the companion go and took on all her mother’s care herself.

Corcoran wishes she could get a vaccination sooner, rather than later. “If I got sick, God forbid, my mother would wind up in a nursing home,” she said. “The thought of my mother having to leave here, where she knows she’s safe and loved, and go to a place like that makes me sick to my stomach.”

Although covid cases are dropping in nursing homes and assisted living facilities as residents and staff members receive vaccines, 36% of deaths during the pandemic have occurred in these settings.

Maggie Ornstein, 42, a caregiving expert who teaches at Sarah Lawrence College, has provided intensive care to her mother, Janet, since Janet experienced a devastating brain aneurism at age 49. For the past 20 years, her mother has lived with Ornstein and her family in Queens, New York.

In a recent opinion piece, Ornstein urged New York officials to recognize family caregivers’ contributions and reclassify them as essential workers. “We’re used to being abandoned by a system that should be helping us and our loved ones,” she told me in a phone conversation. “But the utter neglect of us during this pandemic — it’s shocking.”

Rosanne Corcoran (right) and her mother, Rose, at Rose’s 80th birthday party in 2008. Rose now has advanced dementia and lives with Corcoran and her family. Corcoran hopes to get the vaccine but has been unable to yet. “If I got sick, God forbid, my mother would wind up in a nursing home,” she says. (Daniel Francis)

Ornstein estimated that if even a quarter of New York’s 2.5 million family caregivers became ill with covid and unable to carry on, the state’s nursing homes would be overwhelmed by applications from desperate families. “We don’t have the infrastructure for this, and yet we’re pretending this problem just doesn’t exist,” she said.

In Tomball, Texas, Robin Davidson’s father was independent before the pandemic, but he began declining as he stopped going out and became more sedentary. For almost a year, Davidson has driven every day to his 11-acre ranch, 5 miles from where she lives, and spent hours tending to him and the property’s upkeep.

“Every day, when I would come in, I would wonder, was I careful enough [to avoid the virus]? Could I have picked something up at the store or getting gas? Am I going to be the reason that he dies? My constant proximity to him and my care for him is terrifying,” she said.

Since her father’s hospitalization, Davidson’s goal is to stabilize him so he can enroll in a clinical trial for congestive heart failure. Medications for that condition no longer work for him, and fluid retention has become a major issue. He’s now home on the ranch after spending more than a week in the hospital and he’s gotten two doses of vaccine — “an indescribable relief,” Davidson said.

Out of the blue, she got a text from the Harris County health department earlier this month, after putting herself on a vaccine waitlist. Vaccines were available, it read, and she quickly signed up and got a shot. Davidson ended up being eligible because she has two chronic medical conditions that raise her risk of covid; Harris County doesn’t officially recognize family caregivers in its vaccine allocation plan, a spokesperson said.

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Older Adults Without Family or Friends Lag in Race to Get Vaccines

A divide between “haves” and “have-nots” is emerging as older adults across the country struggle to get covid-19 vaccines.

Seniors with family members or friends to help them are getting vaccine appointments, even if it takes days to secure them. Those without reliable social supports are missing out.

Elders who can drive — or who can get other people to drive them — are traveling to locations where vaccines are available, crossing city or county borders to do so. Those without private transportation, are stuck with whatever is available nearby.

Older adults who are comfortable with computers and have internet service are getting notices of vaccine availability and can register online for appointments. Those who can’t afford broadband services or don’t use computers or smartphone apps are likely missing out on information about vaccines and appointments.

The extent of this phenomenon has not been documented yet. But experts are discussing it on various forums, as are older adults and family members.

“I’m very concerned that barriers to getting vaccines are having unequal impact on our older population,” said Dr. XinQi Dong, director of the Institute for Health, Health Policy and Aging Research at Rutgers University.

Disproportionately, these barriers appear to be affecting Blacks and Hispanic elders as well as people who are not native English speakers; older adults living in low-income neighborhoods; seniors who are frail, seriously ill or homebound; and those with vision and hearing impairments.

“The question is ‘Who’s going to actually get vaccines?’ — older adults who are tech-savvy, with financial resources and family members to help them, or harder-to-reach populations?” said Abraham “Ab” Brody, an associate professor of nursing and medicine at New York University.

“If seniors of color and people living in poor neighborhoods can’t find a way to get vaccines, you’re going to see disparities that have surfaced during the pandemic widening,” he said.

Preliminary evidence from an analysis by KHN indicates this appears to be happening. In 23 states reporting vaccine data by race, Blacks are being vaccinated at a far lower rate than whites, based on their share of the population. The data on Hispanics suggests similar disparities but is incomplete.

Although the data is not age-adjusted, Blacks and Hispanic seniors have been far more likely to become seriously ill and die from covid than white seniors during the pandemic, other evidence shows.

Myrna Hart, 79, who has diabetes and high blood pressure and lives in Cottage Grove, Minnesota, a southern suburb of St. Paul, is afraid she’ll be left behind during the vaccine rollout. Hart, who is Black, is eager to get a shot, but she can’t travel to two large vaccination sites for seniors in Minneapolis’ northern suburbs, more than 30 miles away.

“That’s too far for me to drive; I don’t know my way, and I could get lost,” she said. “If they have a handful of people who look like me in those places, I would be surprised. I wouldn’t feel safe going there by myself.”

Family members can’t give her a ride. Hart’s husband is in a skilled nursing facility, receiving rehabilitation after having a leg amputated due to diabetes. Her son is in the hospital, with complications from kidney disease. A daughter lives in Westchester County, New York.

So far, Hart has had no success getting an appointment online at smaller, closer vaccine locations.

“I don’t know how much I can endure this,” she said, her voice breaking, as she described her fear of catching covid and her frustration. “I’m afraid they’re going to run out [of vaccine] before they get to people my age, now that they’ve changed the plan to include 65-year-olds who are jumping ahead of us.”(Like many states, Minnesota widened eligibility to people 65 and older in mid-January, following recommendations from the federal government.)

Although Hart, a former accountant and bookstore owner, knows her way around computers, many older adults don’t.

According to a new survey by University of Michigan researchers, nearly 50% of Black seniors and 53% of Hispanic older adults did not have online “patient portal” accounts with their health care providers as of June 2020, compared with 39% of white elders.

What’s more, a significant portion of Black and Hispanic older adults lack internet access — 25% and 21%, respectively, according to the Census Bureau.

“It’s not enough to offer technological solutions to these seniors: They need someone — an adult child, a grandchild, an advocate — who can help them engage with the health care system and get these vaccines,” said Dr. Preeti Malani, director of the University of Michigan’s National Poll on Healthy Aging.

In Birmingham, Alabama, Dr. Anand Iyer, a pulmonologist who specializes in caring for older adults, runs a clinic for more than 200 indigent patients with various types of chronic lung disease — conditions that put them at risk of becoming seriously ill if they’re infected with coronavirus. Seventy percent of his patients are Black, and many are elderly.

“I would estimate 10% to 20% are at risk of missing out on vaccines because they’re homebound, live alone, don’t have transportation or lack reliable social connections,” he said. “Unfortunately, those are the same factors that put them at risk of poor outcomes from covid.”

Every week, he gets a call from a 90-year-old Black patient who lives alone in Tuskegee with chronic obstructive pulmonary disease, heart failure, cancer and severe arthritis. “She’s old, but she’s resilient and she keeps me posted on what’s going on,” Iyer said.

To the doctor’s knowledge, this patient doesn’t have children, other family members or friends to help her; instead, she relies on a handyman who comes around every so often. “How in the world is she supposed to get the vaccine?” he wondered.

Kei Hoshino Quigley, 42, of New York City, knows that her parents — Japanese American immigrants, who have lived with her since last March — couldn’t have managed without her help.

Although Quigley’s 70-year-old father and 80-year-old mother speak English, they have heavy accents and “it can be very hard for people to understand them,” she said.

In addition, Quigley’s father doesn’t know how to use computers, and her mother’s eyesight isn’t good. “For older people who don’t speak English as their native language and who are intimidated by the computer, the systems that have been set up are just nuts,” Quigley said.

Knowing they couldn’t navigate vaccine registration systems on their own, Quigley spent hours online trying to secure appointments for her parents.

After encountering a host of problems — frequent error messages, information she inputted suddenly getting wiped out on vaccine registration sites, calendars with disappearing-by-the-second appointments, incorrect notices that her parents didn’t quality — Quigley arranged for her mother to be vaccinated in mid-January and for her father to get his first shot a few weeks later.

Language issues are also a significant hurdle for older Hispanics, who “are not being offered information on vaccines in a way they understand or in Spanish,” said Yanira Cruz, president and chief executive officer of the National Hispanic Council on Aging.

“I’m very concerned that older adults who are not fluent in English, who don’t have a family member to help them navigate online, and who don’t have access to private transportation are going to be left out” during this rollout, she said.

None of the older adults living in two low-income housing complexes run by her organization in Washington, D.C., and Garden City, Kansas, have received vaccines, Cruz said. “We should be bringing the vaccines to where seniors live, not asking them to take a bus, expose themselves to other people, and try to find their way to a clinic,” she said.

Nothing can substitute for a friend or family member determined to make sure an older loved one is protected against covid. Joanna Stolove has played that role for her father, 82, who is blind and has congestive heart failure, and her mother, 74, who has Lewy body dementia.

The couple lives in Nassau County on New York’s Long Island and receives 40 hours of care at home each week.

Stolove, a geriatric social worker, took time during work to try to get her father an appointment, but many people don’t have that luxury. She works at a naturally occurring retirement community in Morningside Heights, a diverse neighborhood on the Upper West Side of Manhattan.

With substantial effort, Stolove secured an appointment for her father at a large drive-in vaccine site on Jones Beach on Jan. 26; her sister found an appointment for her mother there in late February. At work, where many of her clients live alone and don’t have family members or friends whom they can rely on for help, she counsels them about vaccines and tries to find appointments on their behalf.

“I have so many advantages in assisting my parents,” Stolove said. “Without help from someone like me, how can people find their way through this?”

If I Have Cancer, Dementia or MS, Should I Get the Covid Vaccine?

As public demand grows for limited supplies of covid-19 vaccines, questions remain about the vaccines’ appropriateness for older adults with various illnesses. Among them are cancer patients receiving active treatment, dementia patients near the end of their lives and people with autoimmune conditions.

Recently, a number of readers have asked me whether older relatives with these conditions should be immunized. This is a matter for medical experts, and I solicited advice from several. All strongly suggested that people with questions contact their doctors and discuss their individual medical circumstances.

Experts’ advice may be helpful since states are beginning to offer vaccines to adults over age 65, 70 or 75, including those with serious underlying medical conditions. Twenty-eight states are doing so, according to the latest survey by The New York Times.

Q: My 80-year-old mother has chronic lymphocytic leukemia. For weeks, her oncologist would not tell her “yes” or “no” about the vaccine. After much pressure, he finally responded: “It won’t work for you, your immune system is too compromised to make antibodies.” She asked if she can take the vaccine anyway, just in case it might offer a little protection, and he told her he was done discussing it with her.

First, some basics. Older adults, in general, responded extremely well to the two covid-19 vaccines that have received special authorization from the Food and Drug Administration. In large clinical trials sponsored by drugmakers Pfizer and Moderna, the vaccines achieved substantial protection against significant illness, with efficacy for older adults ranging from 87% to 94%.

But people 65 and older undergoing cancer treatment were not included in these studies. As a result, it’s not known what degree of protection they might derive.

Dr. Tobias Hohl, chief of the infectious diseases service at Memorial Sloan Kettering Cancer Center in New York City, suggested that three factors should influence patients’ decisions: Are vaccines safe, will they be effective, and what is my risk of becoming severely ill from covid-19? Regarding risk, he noted that older adults are the people most likely to become severely ill and perish from covid, accounting for about 80% of deaths to date — a compelling argument for vaccination.

Regarding safety, there is no evidence at this time that cancer patients are more likely to experience side effects from the Pfizer-BioNTech and Moderna vaccines than other people. Generally, “we are confident that these vaccines are safe for [cancer] patients,” including older patients, said Dr. Armin Shahrokni, a Memorial Sloan Kettering geriatrician and oncologist.

The exception, which applies to everyone, not just cancer patients: people who are allergic to covid-19 vaccine components or who experience severe allergic responses after getting a first shot shouldn’t get covid-19 vaccines.

Efficacy is a consideration for patients whose underlying cancer or treatment suppresses their immune systems. Notably, patients with blood and lymph node cancers may experience a blunted response to vaccines, along with patients undergoing chemotherapy or radiation therapy.

Even in this case, “we have every reason to believe that if their immune system is functioning at all, they will respond to the vaccine to some extent,” and that’s likely to be beneficial, said Dr. William Dale, chair of supportive care medicine and director of the Center for Cancer Aging Research at City of Hope, a comprehensive cancer center in Los Angeles County.

Balancing the timing of cancer treatment and immunization may be a consideration in some cases. For those with serious disease who “need therapy as quickly as possible, we should not delay [cancer] treatment because we want to preserve immune function and vaccinate them” against covid, said Hohl of Memorial Sloan Kettering.

One approach might be trying to time covid vaccination “in between cycles of chemotherapy, if possible,” said Dr. Catherine Liu, a professor in the vaccine and infectious disease division at Fred Hutchinson Cancer Research Center in Seattle.

In new guidelines published late last week, the National Comprehensive Cancer Network, an alliance of cancer centers, urged that patients undergoing active treatment be prioritized for vaccines as soon as possible. A notable exception:  Patients who’ve received stem cell transplants or bone marrow transplants should wait at least three months before getting vaccines, the group recommended.

The American Cancer Society’s chief medical and scientific officer, Dr. William Cance, said his organization is “strongly in favor of cancer patients and cancer survivors getting vaccinated, particularly older adults.” Given vaccine shortages, he also recommended that cancer patients who contract covid-19 get antibody therapies as soon as possible, if their oncologists believe they’re good candidates. These infusion therapies, from Eli Lilly and Co. and Regeneron Pharmaceuticals, rely on synthetic immune cells to help fight infections.

Q: Should my 97-year-old mom, in a nursing home with dementia, even get the covid vaccine?

The federal government and all 50 states recommend covid vaccines for long-term care residents, most of whom have Alzheimer’s disease or other types of cognitive impairment. This is an effort to stem the tide of covid-related illness and death that has swept through nursing homes and assisted living facilities — 37% of all covid deaths as of mid-January.

The Alzheimer’s Association also strongly encourages immunization against covid-19, “both for people [with dementia] living in long-term care and those living in the community, said Beth Kallmyer, vice president of care and support.

“What I think this question is trying to ask is ‘Will my loved one live long enough to see the benefit of being vaccinated?’” said Dr. Joshua Uy, medical director at a Philadelphia nursing home and geriatric fellowship director at the University of Pennsylvania’s Perelman School of Medicine.

Potential benefits include not becoming ill or dying from covid-19, having visits from family or friends, engaging with other residents and taking part in activities, Uy suggested. (This is a partial list.) Since these benefits could start accruing a few weeks after residents in a facility are fully immunized, “I would recommend the vaccine for a 97-year-old with significant dementia,” Uy said.

Minimizing suffering is a key consideration, said Dr. Michael Rafii, associate professor of clinical neurology at the University of Southern California’s Keck School of Medicine. “Even if a person has end-stage dementia, you want to do anything you can to reduce the risk of suffering. And this vaccine provides individuals with a good deal of protection from suffering severe covid,” he said.

“My advice is that everyone should get vaccinated, regardless of what stage of dementia they’re in,” Rafii said. That includes dementia patients at the end of their lives in hospice care, he noted.

If possible, a loved one should be at hand for reassurance since being approached by someone wearing a mask and carrying a needle can evoke anxiety in dementia patients. “Have the person administering the vaccine explain who they are, what they’re doing and why they’re wearing a mask in clear, simple language,” Rafii suggested.

Q: I’m 80 and I have Type 2 diabetes and an autoimmune disease. Should I get the vaccine?

There are two parts to this question. The first has to do with “comorbidities” — having more than one medical condition. Should older adults with comorbidities get covid vaccines?

Absolutely, because they’re at higher risk of becoming seriously ill from covid, said Dr. Abinash Virk, an infectious diseases specialist and co-chair of the Mayo Clinic’s covid-19 vaccine rollout.

“Pfizer’s and Moderna’s studies specifically looked at people who were older and had comorbidities, and they showed that vaccine response was similar to [that of] people who were younger,” she noted.

The second part has to do with autoimmune illnesses such as lupus or rheumatoid arthritis, which also put people at higher risk. The concern here is that a vaccine might trigger inflammatory responses that could exacerbate these conditions.

Philippa Marrack, chair of the department of immunology and genomic medicine at National Jewish Health in Denver, said there’s no scientifically rigorous data on how patients with autoimmune conditions respond to the Pfizer and Moderna vaccines.

So far, reasons for concern haven’t surfaced. “More than 100,000 people have gotten these vaccines now, including some who probably had autoimmune disease, and there’s been no systematic reporting of problems,” Marrack said. If patients with autoimmune disorders are really worried, they should talk with their physicians about delaying immunization until other covid vaccines with different formulations become available, she suggested.

Last week, the National Multiple Sclerosis Society recommended that most patients with multiple sclerosis — another serious autoimmune condition — get the Pfizer or Moderna covid vaccines.

“The vaccines are not likely to trigger an MS relapse or to worsen your chronic MS symptoms. The risk of getting COVID-19 far outweighs any risk of having an MS relapse from the vaccine,” it said in a statement.

We’re eager to hear from readers about questions you’d like answered, problems you’ve been having with your care and advice you need in dealing with the health care system. Visit khn.org/columnists to submit your requests or tips.