Catherine “Cat” Popp made every effort to steer clear of hospitals after her Alzheimer's diagnosis in 2014 at the age of 53. A marathon runner, Popp remained in good physical shape and traveled the world with her partner, Anthony Copeland-Parker. The couple, who live in Atlanta, visited six continents and ran half-marathons and some full marathons in 35 countries.
By 2022 Popp's cognitive and communication skills were declining, but she remained active. On a trip to San Diego with Copeland-Parker, Popp had a seizure one morning, then another seizure within four hours. She had had attacks before, but never two episodes in a day, so Copeland-Parker called 911. (People with Alzheimer's disease, especially in the later stages, are at higher risk of seizures, according to a study published in the Journal of Neurology in 2020.)
At the hospital, Popp was admitted and underwent CT and MRI scans, both of which showed no signs of bleeding in the brain or a stroke. Before Copeland-Parker left to get some sleep at a hotel, he was assured by a hospital attendant that someone would stay with Popp through the night. When he returned the next day, he found Popp restrained in the hospital bed, hooked up to IV lines, and seemingly overly sedated. She was having difficulty swallowing and sometimes choked when fed.
After a second day at the hospital, during which the staff never got her out of bed, Popp had more trouble eating and drinking and was heavily sedated. Copeland-Parker was so upset that he worked with the doctors and nurses to get Popp discharged as soon as safely possible and took her home to see her neurologist.
For many people with neurologic conditions, being hospitalized carries some risks. “Being admitted is a stressful ordeal under any circumstances, but adding cognitive challenges, motor disabilities, and confusion and communication problems can add several more layers of complexity to the situation,” says Melissa Mattison, MD, chief of hospital medicine at Massachusetts General Hospital and associate professor of medicine at Harvard Medical School.
During a typical stay, a patient's sleep may be interrupted for vital sign checks, medication schedules may be disrupted, and noise levels can be louder than at home. These factors can exacerbate symptoms related to neurologic conditions. People with Parkinson's disease, dementia, stroke, epilepsy, or ALS may experience worsening motor function, bouts of confusion or delirium, trouble swallowing food or drinks, or an elevated risk of falls. Hospitalized patients who wear hearing aids or glasses often forget to bring them to the hospital or misplace them while there, which can worsen confusion and disorientation, says Jori Fleisher, MD, FAAN, associate professor of neurological sciences at Rush University Medical Center in Chicago.
Furthermore, those with neurologic disorders often remain in the hospital longer than patients in general, are more likely to get discharged to a rehabilitation facility rather than return home, and have higher readmission rates.
“Patients and their caregivers should find alternatives to hospital visits whenever possible, especially for procedures that can be done on an outpatient basis,” says Michele Tagliati, MD, FAAN, professor and vice chair of the neurology department at Cedars-Sinai Medical Center in Los Angeles. “Even with emergency surgeries, try to limit the length of stay in a hospital to avoid potential health threats.”
It's not always clear to hospital personnel that a patient has a neurologic condition when admitted to a hospital during an emergency situation, says Dr. Mattison. “The health care team may not know a patient's baseline cognitive and functional status or appreciate how it might be affected by sudden illness,” she says. The team also may know nothing about other medical conditions, allergies, medications, code status, or advance directives, says Dr. Fleisher. “Never assume that different systems ‘talk to each other’ or share electronic medical records,” she adds. “Be prepared to provide up-to-date medication lists, allergies, contact information for regular health care providers, and copies of any advance directives.”
In San Diego, Copeland-Parker made a point to tell the EMTs about Popp's diagnosis. They in turn radioed the information to the hospital. When the nurses checked Popp's blood pressure and discovered how low her heart rate was, Copeland-Parker explained that she was a marathon runner. (People who run marathons often have low heart rates.) “Despite sharing information with the staff, I felt like they didn't really listen, which is why caregivers need to consistently and repeatedly speak up for their loved ones,” he says.
Sometimes physicians and nurses have little experience with a patient's neurologic condition. If that is the case, Dr. Tagliati says, the patient or caregiver should request a consultation with the neurologist on duty.
Anticipate Medication Changes
To identify patients with Parkinson's disease when they enter the hospital, the Parkinson's Foundation and Epic, one of the country's largest health care software companies, developed a system that flags a diagnosis of Parkinson's disease and provides information on disease-specific care to prevent avoidable risks like medication errors and contraindicated treatments (such as antinausea medicines that interact with some Parkinson's drugs). The foundation also created a Hospital Safety Guide to help patients and their families prepare for a stay. It includes information sheets that can be given to hospital staff to ensure that they are aware of common precautions related to patients with Parkinson's disease.
In most hospitals, patients are not allowed to take their own medications, so patients and family members need to inform hospital personnel about medications to avoid drug interactions or repeat doses.
“Many people with Parkinson's have to stick to a tight medication schedule that is unique to the individual,” says Lynn Rice, a movement disorders nurse in the department of neurological sciences at Rush University Medical Center in Chicago. “Patients should bring a list of their current medications, doses, and, most important, the exact times they take their medications at home so that they can be ordered and administered as closely to the home schedule as possible, and the hospital pharmacy can make adjustments for any medications not on its drug formulary list.”
Jim McNasby, 55, was diagnosed with Parkinson's disease in 2000. When he had his hip replaced in 2023, he packed his drugs in his overnight bag. “I wasn't sure if I would want to take my Parkinson's medications after a surgery that would affect my movement, but I brought them just in case. I knew that if I did want them, I wouldn't want to wait,” says McNasby, who is general counsel for the Michael J. Fox Foundation for Parkinson's Research and lives in New York City.
Ask About Anesthesia
If a person is in the hospital for surgery, anesthesia raises additional concerns. People with preexisting cognitive impairment and dementia are at an increased risk of postsurgical delirium, cognitive decline, and poor functional recovery following anesthesia. People with Parkinson's disease may experience temporary worsening of symptoms, especially if medications are withheld for too long.
“Patients and their families should ask whether a surgical procedure can be performed with mild anesthesia instead of general anesthesia, which may cause complications,” says James M. Noble, MD, FAAN, associate professor of neurology at the Columbia University Irving Medical Center Taub Institute for Research on Alzheimer's Disease and the Aging Brain in New York. “The anesthesiologist should be made aware of the person's neurologic condition, the medications they are on, and any other health issues that might complicate anesthesia during surgery.”
Postoperative delirium is a frequent complication for older patients, people with cognitive difficulties, and those on numerous medications. “Delirium can make it difficult for patients to understand their care and make decisions about their treatment, and can lead to a greater risk of falls and other injuries,” says Dr. Noble.
Delirium can be subtle or pronounced and can change from hour to hour over the course of days. Caregivers should listen for comments that seem disconnected from the active conversation, says Elizabeth Phelan, MD, professor of geriatric medicine at the University of Washington School of Medicine in Seattle. “Anxiety, agitation, and paranoia are extreme forms of delirium. If family members hear loved ones say something like, ‘They tried to kill me,’ that could be a sign of delirium or their condition worsening, and they may need medical attention.”
Enlist Help
Caregivers also can rally personal support for hospital patients. Eric Molath of Jensen Beach, FL, enlisted family members to spend time with his wife, Alanna, when she was hospitalized after a stroke in October 2023. Their teenage son and Alanna's mother and sister would read to her and play music. When Alanna came home, they all were involved in scheduling and taking her to therapy and doctors’ appointments.
“Choosing a hospital for elective or planned surgery is also key,” says Dr. Tagliati. Consider ones with neurology departments that offer advanced care; they will have nurses and assistants trained to recognize the special needs of those with neurologic conditions.
McNasby's husband, Donald Moss, thought the staff at the hospital understood McNasby's needs as a patient with Parkinson's disease. Just to be safe, though, he stayed with McNasby in the preoperative room. “People with Parkinson's disease tend to speak softly, so it's helpful to have someone there to help with communication,” says Moss. “I make sure to always be courteous with the staff, because I want Jim to get the best care.”
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