Got long covid? Medical expertise is vital, and seniors should prepare to go slow

Older adults who have survived covid-19 are more likely than younger patients to have persistent symptoms such as fatigue, breathlessness, muscle aches, heart palpitations, headaches, joint pain, and difficulty with memory and concentration — problems linked to long covid.

But it can be hard to distinguish lingering aftereffects of covid from conditions common in older adults such as lung disease, heart disease, and mild cognitive impairment. There are no diagnostic tests or recommended treatments for long covid, and the biological mechanisms that underlie its effects remain poorly understood.

"Identifying long covid in older adults with other medical conditions is tricky," said Dr. Nathan Erdmann, an assistant professor of infectious diseases at the University of Alabama-Birmingham's school of medicine. Failing to do so means older covid survivors might not receive appropriate care.

What should older adults do if they don't feel well weeks after becoming ill with the virus? I asked a dozen experts for advice. Here's what they suggested.

Seek medical attention. "If an older person or their caregiver is noticing that it's been a month or two since covid and something isn't right — they've lost a lot of weight or they're extremely weak or forgetful — it's worth going in for an evaluation," said Dr. Liron Sinvani, director of the geriatric hospitalist service at Northwell Health, a large health system in New York.

But be forewarned: Many primary care physicians are at a loss as to how to identify and manage long covid. If you're not getting much help from your doctor, consider getting a referral to a specialist who sees long covid patients or a long covid clinic. Also, be prepared to be patient: Waits for appointments are lengthy.

At least 66 hospitals or health systems have created interdisciplinary clinics, according to Becker's Hospital Review, an industry publication. For people who don't live near one of those, virtual consultations are often available. For specialist referrals, ask whether the physician has experience with long covid patients.

Also, more than 80 medical centers in more than 30 states are enrolling patients in a four-year, $1.15 billion study of long covid that is being funded by the National Institutes of Health and is known as RECOVER (Researching COVID to Enhance Recovery). Older adults who choose to participate will receive ongoing medical attention.

Pursue comprehensive care. At the University of Southern California's covid recovery clinic, physicians start by making sure that any underlying medical conditions that older patients have — for instance, heart failure or chronic obstructive pulmonary disease — are well controlled. Also, they check for new conditions that may have surfaced after a covid infection.

If preexisting and new conditions are properly managed and further tests come back negative, "there is probably an element of long covid," said Dr. Caitlin McAuley, one of two physicians at the Keck School of Medicine clinic.

At that point, the focus becomes helping older adults regain the ability to manage daily tasks such as showering, dressing, moving around the house, and shopping. Typically, several months of physical therapy, occupational therapy, or cognitive rehabilitation are prescribed.

Dr. Erica Spatz, an associate professor of cardiology at the Yale School of Medicine, looks for evidence of organ damage, such as changes in the heart muscle, in older patients. If that's detected, there are well-established treatments that can be tried. "The older a person is, the more likely we are to find organ injury," Spatz said.

At the Shirley Ryan AbilityLab in Chicago, a rehabilitation hospital, experts have discovered that a significant number of patients with breathing problems have atrophy in the diaphragm, a muscle that's essential to breathing, said Dr. Colin Franz, a physician-scientist. Once inflammation is under control, breathing exercises help patients build back the muscle, he said.

For older adults concerned about their cognition after covid, McAuley recommends a neuropsychological exam. "Plenty of older patients who've had covid feel like they now have dementia. But when they do the testing, all their higher-level cognitive functioning is intact, and it's things like attention or cognitive fluency that are impaired," she said. "It's important to understand where deficits are so we can target therapy appropriately."

Become active gradually. Older patients tend to lose strength and fitness after severe illness — a phenomenon known as "deconditioning" — and their blood volume and heart muscles will start shrinking in a few weeks if they lie in bed or get little activity, Spatz said. That can cause dizziness or a racing heart upon standing up.

In line with recent recommendations from the American College of Cardiology, Spatz advises patients who have developed these symptoms after covid to drink more fluids, consume more salt, and wear compression socks and abdominal binders.

"I often hear that going for a walk feels awful," Spatz said. When returning to exercise, "start with five to 10 minutes on a recumbent bicycle or a rower, and add a couple of minutes every week," she suggested. After a month, move to a semi-recumbent position on a standard bike. Then, after another month, try walking, a short distance at first and then longer distances over time.

This "go slow" advice also applies to older adults with cognitive concerns after covid. Franz said he often recommends restricting time spent on cognitively demanding tasks, along with exercises, for brain health and memory. At least early on, "people need less activity and more cognitive rest," he noted.

Reset expectations. Older adults typically have a harder time bouncing back from serious illness, including covid. But even seniors who had mild or moderate reactions to the virus can find themselves struggling weeks or months later.

The most important message older patients need to hear is "give yourself time to recover," said Dr. Greg Vanichkachorn, director of the Mayo Clinic's Covid Activity Rehabilitation Program in Rochester, Minnesota. Generally, older adults appear to be taking longer to recover from long covid than younger or middle-aged adults, he noted.

Learning how to set priorities and not do too much too quickly is essential. "In this patient population, we've found that having patients grit their teeth and push themselves will actually make them worse" — a phenomenon known as "post-exertional malaise," Vanichkachorn said.

Instead, people need to learn how to pace themselves.

"Any significant health event forces people to reexamine their expectations and their priorities, and long covid has really accelerated that," said Jamie Wilcox, an associate professor of clinical occupational therapy at the Keck School of Medicine. "Everyone I see feels that it's accelerated their aging process."

Consider vulnerabilities. Older adults who have had covid and who are poor, frail, physically or cognitively disabled, and socially isolated are of considerable concern. This group has been more likely to experience severe effects from covid, and those who survived may not readily access health care services.

"We all share concern about marginalized seniors with limited health care access and poorer overall health status," said Erdmann, of UAB. "Sprinkle a dangerous new pathology that's not well understood on top of that, and you have a recipe for greater disparities in care."

"A lot of older [long covid] patients we deal with aren't accustomed to asking for help, and they think, perhaps, it's a little shameful to be needy," said James Jackson, director of long-term outcomes at the Critical Illness, Brain Dysfunction, and Survivorship Center at Vanderbilt University Medical Center in Nashville, Tennessee.

The implications are significant, not only for the patients but also for health care providers, friends, and family. "You really have to check in with people who are older and vulnerable and who have had covid and not just make assumptions that they're fine just because they tell you they are," Jackson said. "We need to be more proactive in engaging them and finding out, really, how they are."

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.