Tagged Electronic Health Records

People With Dementia Are Twice as Likely to Get Covid, Huge Study Finds

People With Dementia Are Twice as Likely to Get Covid, Huge Study Finds

The analysis of nearly 62 million electronic medical records in the U.S. also found that Black people with dementia were at an even greater risk.

Lynda Hartman, 75, visited her 77-year-old husband, Len Hartman, who lives with dementia, in a hug tent outside an assisted living center in Louisville, Colo., this month.
Lynda Hartman, 75, visited her 77-year-old husband, Len Hartman, who lives with dementia, in a hug tent outside an assisted living center in Louisville, Colo., this month.Credit…Thomas Peipert/Associated Press
Pam Belluck

  • Feb. 9, 2021, 7:00 a.m. ET

People with dementia had significantly greater risk of contracting the coronavirus, and they were much more likely to be hospitalized and die from it, than people without dementia, a new study of millions of medical records in the United States has found.

Their risk could not be entirely explained by characteristics common to people with dementia that are known risk factors for Covid-19: old age, living in a nursing home and having conditions like obesity, asthma, diabetes and cardiovascular disease. After researchers adjusted for those factors, Americans with dementia were still twice as likely to have gotten Covid-19 as of late last summer.

“It’s pretty convincing in suggesting that there’s something about dementia that makes you more vulnerable,” said Dr. Kristine Yaffe, a professor of neurology and psychiatry at the University of California, San Francisco, who was not involved in the study.

The study found that Black people with dementia were nearly three times as likely as white people with dementia to become infected with the virus, a finding that experts said most likely reflected the fact that people of color generally have been disproportionately harmed during the pandemic.

“This study highlights the need to protect patients with dementia, especially those who are Black,” the authors wrote.

Maria Carrillo, chief science officer of the Alzheimer’s Association, which runs the journal that published the study, Alzheimer’s and Dementia, said in an interview, “One of the things that has come from this Covid situation is that we should be pointing out these disparities.”

The study was led by researchers at Case Western Reserve University who analyzed electronic health records of 61.9 million people age 18 and older in the United States from Feb. 1 through Aug. 21, 2020. The data, collected by IBM Watson Health Explorys, came from 360 hospitals and 317,000 health care providers across all 50 states and represented a fifth of the American population, the authors said.

Rong Xu, a professor of biomedical informatics at Case Western and the senior author of the study, said there had been speculation about whether people with dementia were more prone to infection and harm from Covid-19.

“We thought, ‘We have the data, we can just test this hypothesis,’” Dr. Xu said.

The researchers found that out of 15,770 patients with Covid-19 in the records analyzed, 810 of them also had dementia. When the researchers adjusted for general demographic factors — age, sex and race — they found that people with dementia had more than three times the risk of getting Covid-19. When they adjusted for Covid-specific risk factors like nursing home residency and underlying physical conditions, the gap closed somewhat, but people with dementia were still twice as likely to become infected.

Experts and the study authors said the reasons for this vulnerability might include cognitive and physiological factors.

“Folks with dementia are more dependent on those around them to do the safety stuff, to remember to wear a mask, to keep people away through social distancing,” said Dr. Kenneth Langa, a professor of medicine at the University of Michigan, who was not involved in the study. “There is the cognitive impairment and the fact that they are more socially at risk,” he said.

Dr. Yaffe said there could also be a “frailty element” to people with dementia, including a lack of mobility and muscle tone, that could affect their resilience to infections.

Dr. Carrillo noted that coronavirus infection was associated with an inflammatory response that has been shown to affect blood vessels and other aspects of the circulatory system. Many people with dementia already have vascular impairment, which may be compounded or amplified by Covid-19.

Indeed, the study authors subdivided patients by the type of dementia listed in the electronic records and found that people designated as having vascular dementia had a greater risk for infection than people designated as having Alzheimer’s disease or other types.

But Dr. Langa and Dr. Yaffe cautioned that there was significant overlap between types of dementia. Many patients have both Alzheimer’s pathology and vascular pathology, they said, and physicians who are not specialists may not distinguish subtypes in providing codes for electronic records.

In examining the risk of hospitalization and death for Covid patients with dementia, the researchers did not adjust for demographics like age or whether they lived in nursing homes or had underlying medical conditions. They found that Covid patients with dementia were 2.6 times as likely to have been hospitalized during the first six months of the pandemic as those without dementia. They were 4.4 times as likely to die.

Black people with Covid-19 and dementia were significantly more likely to be hospitalized than white people who had both diseases. The authors did not find a significant difference in the mortality rate for Black and white coronavirus patients with dementia, although they wrote that the number of deaths analyzed, 170, might be too small to provide a solid conclusion about that.

Experts noted that one limitation to the study was that researchers did not have access to socioeconomic information, which could provide increased understanding of patients’ risk factors.

Dr. Langa also noted that the data reflected only people who have interacted with the health care system, so it doesn’t include “more isolated and poorer patients that have a harder time getting to doctors.”

Consequently, he said, the study may be “an underestimate of the greater Covid infection risk for those with dementia.”

The Doctor-Patient Relationship Is Alive and Well

It’s 2:20 p.m. and Ms. M. is precisely on time for her appointment. She’s brought her hand-printed list of questions, her sack of medications that need renewal, her mordant observations about her newest home attendant, and a box of chocolates that she will press upon me no matter how hard I protest. At 89, her medical conditions don’t have easy cures and the setbacks from aging are often implacable. Yet we always manage to find something optimistic to work on, even if modest in scope.

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Danielle Ofri, M.D.

Danielle Ofri, M.D.Credit Joon Park

Ms. M. requires the assistance of her daughter to make the hour-plus trip by public transportation. Over the 10 years we’ve worked together, I’ve periodically suggested she might consider a clinic closer to home to avoid the arduous travel. She sniffs sharply at the affront and then barrels into the meat of our visit.

It’s been a rocky decade for medicine — the Affordable Care Act, the migration to electronic medical records, record-breaking medication prices, and the shift from traditional doctor-run practices to mammoth corporate-run organizations have left us all reeling. Physician anger at overwhelming administrative demands and patient frustration at the impossibility of navigating the system have frayed the fortitude of everyone.

Medicine is unquestionably harder than it was 10 years ago. Many more doctors I know talk about quitting (an option that is not equally available to patients). However, there’s been no mass exodus of doctors. We doctors grumble loudly — often with good cause — but we aren’t quitting in droves, mainly because of patients like Ms. M.

A new study by the Physicians Foundation of more than 1,500 patients found that more than 90 percent of patients were satisfied with their relationship with their primary care doctor. They felt that their doctors were respectful of them, listened well, explained well, and had a good understanding of their medical history.

On the surface, this seems to contradict the dyspeptic view of medicine we hear about in the media. But it actually reflects the larger truth that most patient rancor is directed not toward the doctor but to the bureaucratic aspects of medicine — the cost, the hassle, the opaqueness. On the whole, patients are happy with the medical care they receive from their primary care doctors — once they’ve slogged through the seven circles of pre-authorization purgatory to get there.

The same is true for doctors. What doctors hate most is everything that surrounds medicine, but not medicine itself. Peel away the administrative migraines and most doctors relish the practice of medicine.

It’s heartening to see that the doctor-patient relationship is surviving this latest round of upheaval. For primary care doctors in particular, whose daily work life has been pummeled with exceptional relentlessness, this latest survey is immensely validating.

So maybe it’s not surprising that it can feel as if morale is both exceptionally high and exceptionally low at the same time. Just this month, a new set of requirements was piled on to our clinic’s electronic medical record system, and a dreary sigh of resignation echoed from one doctor to the next. With all the computerized busywork that a medical visit requires these days, there’s hardly time to call in our patients from the waiting room.

On the other hand, when we welcome our new students and interns — July is the starting month of the medical calendar — the enthusiasm for primary care is fervent. We all have patients, like Ms. M., who bring joy and fulfillment no matter how much inanity we have to lumber though in the electronic medical records system.

Nothing comes close to the experience of making another human being feel better, even a tiny bit. After months of trial and error, Ms. M. and I finally worked out a schedule of her diuretic pill such that she could go for a midday stroll without having to scramble for a nonexistent public bathroom. This isn’t the sort of high-tech medical wizardry that grabs headlines or stock prices, but it allows a formerly housebound patient to now keep tabs on her Brooklyn neighborhood.

The awe of discovering the human body, the honor of being trusted to give advice, the gratification of helping someone through a difficult illness, the intellectual stimulation of continually learning — these things never grow old.

And word seems to be getting out — applications to medical school are at an all-time high, and new medical schools are opening to meet the demand. (By comparison, law school applications continue to decline and business school applications remain flat.)

When I close the door to the exam room and it’s just the patient and me, with all the bureaucracy safely barricaded outside, the power of human connection becomes palpable. I can’t always solve my patients’ issues, but the opportunity to try cannot be underestimated.

We doctors shouldn’t be afraid to speak up about what’s wrong with medicine — and there is plenty that is wrong. But we also shouldn’t be afraid to speak up about what’s right. While the logistics of practicing medicine may feel like an ever-tightening thumbscrew, the doctor-patient relationship is alive and well, and the prognosis is excellent.

Danielle Ofri’s newest book is “What Doctors Feel: How Emotions Affect the Practice of Medicine.” She is a physician at Bellevue Hospital and an associate professor of medicine at N.Y.U. School of Medicine, as well as editor in chief of the Bellevue Literary Review. She spoke on Deconstructing Perfection at TEDMED.

Let Patients Read Their Medical Records

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Credit Reynaldo Leal for The Texas Tribune

Sometimes, before I interview new patients, while I’m waiting for them to be transported from the emergency department to the medical floor, I play a game.

I look through their lab tests. I peruse their imaging studies. I read other doctors’ notes and recent discharge summaries. Then I guess what the diagnosis is.

I know this is bad. It goes against most of what I learned about good doctoring in medical school — that the patient’s story is the core of medicine, that it’s essential for accurate diagnoses and therapeutic relationships.

It can also be dangerous. When I interview patients, I often find their medical charts are littered with inaccuracies. It’s one reason “read it in my chart” isn’t a good way for patients to communicate health information — or for doctors to learn it.

“I noticed you’re scheduled for surgery next week,” I say to one patient.

“I had that surgery three months ago,” he responds.

“So you don’t have diabetes?” I ask another, perplexed. I see “diabetes” clearly indicated in her chart.

“No! Why does everyone keep asking me that?” she exclaims, exasperated.

When I read a patient’s electronic health record, I now assume what’s written there is as likely to be wrong or outdated as it is to be accurate. Sometimes these discrepancies are minor and inconsequential; sometimes they can be devastating. And unlike what happens in Vegas, what’s written in your medical record often stays with you forever.

One study found that there’s complete agreement between medications listed in the electronic health record and what patients actually take only in about 5 percent of patients. Another study found that 43 percent of medications listed in the electronic health record were inaccurate — with 29 percent having been stopped and 14 percent changed. Many allergies and adverse drug reactions aren’t recorded. Research from the Veterans Health Administration found that 60 percent of patient records had at least one error. From 2013 to 2014, the percentage of lawsuits related to electronic health record issues doubled and is expected to rise.

The ease with which doctors can copy and paste the information in a medical record can be one source of error — as well as a potent source of “note bloat”: notes so filled with extraneous information that you have to scroll through pages and pages of nonsense to find anything useful. Almost all doctors use the copy-paste function when writing notes, and by some estimates between half and three-quarters of daily notes are copied text. There are advantages: Forwarding text for stable patients can be safe and efficient — and a majority of doctors believe it doesn’t hurt patients. But, if not done carefully, it can perpetuate false or outdated material.

Another problem is that large amounts of patient information are now automatically imported into patient notes. Cognitively, it’s a very different experience searching for, confirming and personally recording aspects of a patient’s history than it is reviewing what’s auto-populated into your note. In some cases, one can “write” an entire note simply by clicking a few boxes to indicate the duration and frequency of a patient’s symptoms — essentially the same way you fill in a Mad Libs template

What can get lost in all this is the patient’s story.

Eliciting, distilling and communicating an account of what’s happened in a person’s life are skills that are vital for all doctors, but especially for doctors in training still learning to care for patients. Gathering and sharing a patient’s story offers the fullest sense of who a patient is as a human being, why he might have received this treatment, for example, and not that one, and what the best course of action might be going forward. We now spend two hours a day reporting quality measures, but what needs to be mandatory in the age of digitalization is the art of story gathering and storytelling.

One solution may be to encourage more patients to read their medical records. Doctors may be motivated to write more thoughtful and accurate notes if they know their patients will be reading them. While patients have had the right to access their medical records since 1996, when the Health Insurance Portability and Accountability Act was enacted, and the right to electronic copies since 2009, most patients never see their charts.

Research suggests that only about 40 percent of patients are offered online access to their medical records. Of those given access, only half choose to view them — but 80 percent of those who do find it useful. A quarter of patients remain unaware of their right to an electronic copy of their medical records. But patients who frequently access their medical records may be more motivated to take control of their health — and in a better position to correct outdated or erroneous information.

The federal government recently released guidelines making it easier for patients to access their records, requiring hospitals to provide electronic copies within 30 days of a request and prohibiting them from asking patients to state a reason for their requests. The government’s Blue Button Initiative also aims to empower patients, allowing them to directly download personal health data in an easy-to-read format.

The push to digitize health care has its upsides. But what’s too easily forgotten is the patient’s story, a coherent narrative of who a person is and what he or she has been through. As medicine continues to modernize, we can’t afford to lose this ancient art.

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Dhruv Khullar, M.D., M.P.P. is a resident physician at Massachusetts General Hospital and Harvard Medical School. Follow him on Twitter: @DhruvKhullar.