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Podcast: Recognizing, caring for dementia patients in the emergency department

This episode of 'Show Me the Science' looks at steps being taken to make it easier for people with dementia to navigate emergency room visits

January 31, 2023

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A new episode of our podcast, “Show Me the Science,” has been posted. These episodes feature stories about groundbreaking research, as well as lifesaving and just plain cool work involving faculty, staff and students at Washington University School of Medicine in St. Louis.

In this episode, we head to the emergency department. Doctors in most emergency departments around the country are dealing with fewer COVID-19-positive patients than before, but they continue to be faced with a different epidemic of sorts: the 20% to 30% of patients with dementia-related cognitive issues who seek emergency care. As the U.S. population ages, it’s more common for emergency physicians to find themselves treating older people who are living with dementia. Further, during the thick of the COVID-19 pandemic, such patients were not allowed to have relatives stay with them to help navigate and better understand what is happening during their visits to the emergency department.

While completing his medical training, Christopher Carpenter, MD, a professor of emergency medicine, had a bad emergency department experience involving his grandfather, who was suffering from dementia at the time. For more than two decades since then, Carpenter has looked for ways to make the emergency department experience easier for those who are living with dementia and their family members and caregivers. He is part of a national effort known as the GEAR Network, which stands for Geriatric Emergency Care Applied Research Network. The organization is studying ways to better identify and serve older patients with dementia. Carpenter says it’s essential to improve emergency care for people living with dementia because as the U.S. population continues to age, the number of such people seeking treatment in emergency departments will continue to increase.

The podcast, “Show Me the Science,” is produced by WashU Medicine Marketing & Communications at Washington University School of Medicine in St. Louis.


Jim Dryden, host: Hello, and welcome to “Show Me the Science,” conversations about science and health with the people of Washington University School of Medicine in St. Louis, Missouri … the Show-Me State. During the first two years that we produced this podcast, we focused entirely on how School of Medicine doctors, researchers and trainees responded to the COVID-19 pandemic. But more recently, we’ve also started reporting on some of the other research, lifesaving and just plain cool work being done at the School of Medicine. We begin this episode in the emergency department at Barnes-Jewish Hospital, one of the hospitals affiliated with the School of Medicine. On a January morning, the waiting room is crowded. But it’s not because of COVID-19. So far, Dr. Chris Carpenter says, none of his patients have tested positive.

Christopher R. Carpenter, MD: I have no COVID patients this morning. For all the admitted patients, we’re sending COVID tests, but none are positive.

Dryden: Carpenter has spent two decades as an emergency physician at Washington University School of Medicine and Barnes-Jewish Hospital in St. Louis. On this morning in the emergency department, as he sits at a computer terminal dictating notes and typing instructions, Carpenter is focused on juggling the patients in front of him.

Carpenter: Trying to see the new patients, disposition of patients that can go home, and keep an eye on the patients who are technically admitted to the hospital to make sure that whatever’s bringing them in is continuing to be managed as if they were in the hospital.

Dryden: During this shift, he’s dealing with the patients in his pod, which is what they call the area of the emergency department that he and another attending physician are responsible for. But when he’s not attending and has the chance to step back and take a broader view, Carpenter devotes his efforts to looking for ways to make the emergency department easier to navigate, particularly for older people, especially for those with dementia, which affects a significant number of the people over age 65 who come to the emergency department. In addition, the stresses associated with serious illness, along with the unfamiliar landscape of an emergency department, often can contribute to what’s known as delirium in older patients, which is defined as an acute change in cognition that can’t be explained by preexisting dementia, but that seems more related to agitation linked to concern about the medical emergency that landed an older person in the ED in the first place.

Carpenter: I’ve got one gentleman who may develop delirium. He’s certainly at risk. He has not manifested that yet, though.

Dryden: This particular day was a good morning for older folks in Dr. Carpenter’s care, but that’s not always the case. The current estimate is that up to 57% of people living with dementia in the United States experience at least one emergency department visit annually and account for a significant percentage of all ED visits involving people 65 years of age and older, suggesting that if the patient in the emergency department is at least 65, there’s a decent chance that person has cognitive problems. To find more effective ways to deal with that, Carpenter is one of the leaders of a national network of researchers known as the GEAR Network.

Carpenter: The Geriatric Emergency Applied Research Network for Advancing Dementia Care, GEAR 2.0-ADC. And it consisted of a consensus conference that took about two years to pull together, involved about 50-some individuals, including neuropsychiatrists and geriatricians and psychiatrists and social workers, nursing, ED physicians, health-care administrators, and patients living with dementia and their care partners.

Dryden: How did you get involved with that?

Carpenter: Yeah, it’s a common problem in the emergency department. Most of them don’t get recognized in the ED and most of them don’t get recognized after they leave the ED with having cognitive impairment. My interest grew — my grandparents both were aging back in the 1990s. And my grandfather, unfortunately, had dementia and had a couple of unfortunate emergency department encounters where that cognitive impairment was not accounted for by the emergency medicine staff and led to some overtesting and unnecessary suffering on the part of my grandfather. And as a trainee at the time, I just felt there had to be a better way to handle this situation. My grandfather was a gentleman who worked for Firestone during World War II and was a phenomenal athlete, from what I understand, in high school. Ran an amateur race against Jesse Owens at the University of Michigan in the 1930s prior to the Olympics and, according to my grandpa, almost beat him but didn’t beat him. Who knows? I wasn’t there. But he was a bedrock of my childhood and a tough guy. And one of the things that really shocked me once I really got to understand my grandfather as an adult was that he had a terrible fear of death. He would not go to his friend’s funerals and would not talk about — would go into a depressed state for two weeks after a friend died. And the ironic thing was, at the end of his life, he was having dementia — we had to put him in an assisted living facility because my grandmother couldn’t handle him — and didn’t even realize that he was nearing death at the time when his time came. And so we made the decision: We do not want to resuscitate him if something happens. He’s fearful of that scenario, and this is merciful if something takes him and takes him away from this dementia, which we can’t cure. And he had an episode in the — I was in Virginia training, and they were in Michigan — and he had a urinary tract infection with sepsis and went to the emergency department. And I’m the only physician in the family, and so I was called from the ED and told what was going on and that he was dropping his blood pressure and not doing well. And I said, “That is wonderful. He’s not suffering, is he?” “No, he looks like he’s comfortable.” I said, “Let’s let him go.” And the ED doctors — and I explained to the ED doctor, “He’s got dementia. We can’t do anything about it, and he’s so fearful of death. Let’s make this as painless as possible for him.” And the ED doctor said, “That’s not how I operate. Let’s resuscitate him. We’ll start some vasopressors and some fluids and some antibiotics, and we’ll see if we can get him back.” And I said “That’s not what he wanted. I just told you what he wanted and what the family wants.” And the ED doctor just ignored it and resuscitated him, and he went back to the nursing home for a couple more months after that and then died of another urinary tract infection after that. Just not respecting the family’s wishes that reflected the patient’s wishes and recognizing the hardship that dementia had brought upon him, it just taught me that there is a better way to deal with this, even during times of emergency.

Dryden: You were training in the emergency department when this was going on. Why had you made the decision that you wanted to specialize?

Carpenter: I was actually training in internal medicine at that time, and I was going to be an interventional cardiologist and shifted my focus. I still wanted to do internal medicine. And so I was in the Navy, so I had to go do some time as a diving medical officer with the SEALs and then came back and did a combined emergency medicine-internal medicine residency with a focus on geriatrics. So it did shift my specialty and my career path. And it wasn’t just cognitive impairment that I was focused on. I’m focused on the big landscape of geriatric emergency care and the vulnerabilities that these patients have. Whether it’s frailty, which we just in the last couple of years figured out how to start to recognize and document in the ED; fall risk, I developed one of the first fall risk assessment tools in the ED when I was a resident in Pittsburgh. And then fast forward about 20 years. I’m now on faculty here at Washington University. Had been doing dementia research for some time, assessment of vulnerability for ED returns, looked at multiple tools for trying to identify which patients are going to have functional decline, ED returns, hospital admissions, or death. And then adapting all of that science to clinical care in the ED by writing guidelines for the American College of Emergency Physicians on how to appropriately care for these patients in the ED and now getting those EDs across the United States accredited through the American College of Emergency Physicians for adherence to those guidelines. And I’m the chair of that oversight committee.

Dryden: Can you quickly give me the thumbnail definition for lay language people of what you mean when you say delirium versus dementia?

Carpenter: Dementia is a chronic neurologic decline, meaning that there is no recovery or reversal from dementia. And it affects your daily decision-making, your ability to go shopping, to balance your bank book. At end-stage dementia, it can even affect your ability to communicate, and patients may not be able to speak at all. Delirium, on the other hand, is a fluctuating episode of altered mental status. It can be hyperactive, somebody very agitated, trying to climb out of bed, maybe falling out of bed, maybe striking a nurse or a physician. It can be hypoactive delirium, which in the ED is the more common. About 80% of cases in the ED are hypoactive delirium, and that’s a patient who’s just sleeping. They arrive at 6:00 in the morning, and they’re asleep. That’s probably pretty normal. But at noon they’re still sleeping in the ED. At 6:00 p.m. they’re still sleeping. They’ve been asleep all day, but that’s not healthy, and that increases long-term mortality. And so the delirium, once you identify the cause, delirium is just a symptom of something that’s causing that. Whether it’s an infection or a medication or a head injury, something is causing that. And once you identify and reverse the cause, that delirium evaporates, and the patient returns to their baseline mental status. One caveat to that is that in persons living with dementia, who are at increased risk for delirium, each episode of delirium is like a stress test for their brain, and their cognitive decline with the dementia accelerates with each episode of delirium. That’s another reason to prevent delirium.

Dryden: Among Carpenter’s main goals are to keep older patients from developing delirium during their experience in the emergency department and to find better ways to identify patients who have dementia while they’re being treated in the emergency department, because the condition isn’t always obvious when a person arrives at the hospital. But Carpenter says the work of the GEAR 2.0-ADC Network is demonstrating that even during the stresses involved in a trip to the ED, it is possible to effectively screen patients for dementia. And Carpenter says that sort of screening can be an important way to prevent repeat visits to the emergency room.

Carpenter: Even if they test abnormal in the emergency department, that may be because they’re acutely sick. But then you wait three weeks. They’ve recovered, they’re at home, they didn’t have delirium in the ED, and you retest them at home, and they still have cognitive impairment. The correlation is phenomenal. We’ve got to do some proactive screening to identify these folks.

Dryden: Is there a concern that because the ED is such a stressful environment — between rushing by the physicians and nurses and waiting by the patients — that what you’re getting wouldn’t be genuine? That the patient has been there for a long time and is agitated, whatever the reasons.

Carpenter: We certainly have to distinguish delirium from dementia in the ED, and those factors you just talked about are a risk factor for delirium. The lack of natural lighting, discomfort, hunger, all those things can precipitate acute delirium. However, like I said, the research we’ve done, we take out the delirium population. We screen them for cognitive impairment and delirium, take out the delirium population, and that 30% is those who don’t have delirium, but they have cognitive impairment. And then you reassess them at three weeks later after they’ve recovered from their acute illness. And the cognitive screening test is the same.

Dryden: You sent me a number of papers. One of the themes that kept recurring was the fact that if these folks are not identified, they’re going to show back up in the ED much more quickly, or they tend to. Is that correct?

Carpenter: Absolutely. Dementia alone, as a pathology, is a predictor of ED returns. And everybody, young or old, that comes to the emergency department knows that these days, the waiting room is often full. And anything that we can do to keep any population from returning to the ED is going to help the rest of the population. I kind of view this cognitively vulnerable population as a canary in the coal mine for the health-care system. And if we can do a better job caring for them, whether that’s communication or identification of problems or processes of care, it’s going to improve the health care for the rest of the population.

Dryden: Can you expand on that a little bit, when you talk about a canary in a coal mine?

Carpenter: What I mean by the canary in the coal mine is that some of these patients are physiologically frail, and that doesn’t always correlate with their age. Some of them, 30% approximately, are cognitively frail, meaning they have some cognitive impairment. That may be mild dementia that’s not even recognized by the patient or family yet, or severe dementia. And any kind of stressor, for example, COVID — early on in the COVID epidemic, these are the populations that really suffered the most. They suffered because COVID hit them harder. Their immune system was not as robust. The ED length of stay for those patients precipitated delirium in this population. And we had a no-visitor policy so that even if we recognized delirium, we couldn’t have a family member at the bedside to reorient the patient. Recognizing those problems in this population, though, can help us to problem-solve for our younger, less vulnerable populations.

Dryden: Now, when you talk about making accommodations for these folks, I guess one would be allowing a family member to be present.

Carpenter: Yeah, there’s a wide range of possibilities of how to handle persons living with dementia. Not all of it costs money, and not all of it even involves health-care personnel. Part of the research network that I’m part of has pilot funding to encourage investigators to come up with proactive creative solutions to this population. One individual is looking at patient-reported outcomes that matter for this dementia population. So is it ED returns that the patients and their care partners most value? Or is it something else like quality of life or functional independence that’s more valuable to them? Another individual is looking at using advanced paramedics in New York City to send folks who have been discharged from the ED, that have recognized dementia, do a check on them to make sure they’re able to keep their follow-up appointments and get to their follow-up appointments and get their medications and try to keep them out of the emergency department using advanced paramedics. The no-visitor policy that you just spoke about with COVID, we’ve done some national advocacy saying that in the setting of an epidemic like COVID, the care partner is not a visitor. They are a health-care partner necessary to keep that patient well at the bedside during the ED episode of care. So just changing the mindset for health-care administrators who put a one-size-fits-all on that no-visitor policy.

Dryden: One of the things that a lot of those papers pointed out was that there hadn’t been a whole lot of good research. So as you began this process, you’re sort of feeling around in the dark almost.

Carpenter: Yeah, I think that there’s a multilayered reasoning for why there’s not a lot of research in this area. My specialty’s problem, emergency medicine, we tend to think of ourselves as the interventionalists, the folks who like to intubate and put chest tubes in and do CPR and pull somebody from the grasp of death. And dementia is a bit different. It’s a chronic condition. There’s not a pill or a cure for this at this point in 2023, and so it didn’t really resonate with the emergency medicine community immediately. It felt more of a primary care issue. A second issue is that we don’t, at the NIH, have a national institute of emergency care. So the research grants that we write go in front of panels of folks who don’t work in the emergency department and don’t understand our environment and think that all we do is take care of heart attacks and strokes and traumas, when most of what we do these days is really not time-dependent emergencies but expansion of primary care, primary dentistry, primary dermatology because patients don’t have access to that care elsewhere. And a lot of our grants to research this population got not scored, not funded. And then a third issue is just in dementia in general. There hasn’t been a lot of research funding from the NIH that didn’t involve seeking the cure. The research funding didn’t deal with persons living with dementia today. It was trying to prevent tomorrow’s dementia and cure it. And so that’s changed. There’s research funding now available, like my GEAR grant, but that’s a new phenomena.

Dryden: Are there lessons that can be learned in this population that could be applied to other populations? I’m thinking, for instance, of those who have disabilities, especially mental disabilities. I would imagine that that’s a difficult population to treat in the ED as well. And is there overlap, I guess?

Carpenter: It’s an area that’s not been well explored, to my knowledge. I think that logically you could apply some of these lessons. That is, once we understand what works in the persons living with dementia in the ED. We really don’t know what works. For instance, just communication. Communicating during an episode of care, what labs were done, what imaging was done, what consultations were done, what our working diagnosis is, and what our follow-up plan is. Studies in nondementia populations in the ED show that adults don’t understand those phenomena. They can’t explain it back to us. In an intervention like teach-back, where we try to explain those factors to a patient prior to discharge with the physician and the nurse and then have the patient tell us what we just told them a minute later, it doesn’t work. It doesn’t. The patients can’t retain that information without dementia. So the presence of dementia just adds another layer of complexity there. And if we can find effective communication strategies, whether those are shared decision-making instruments, a paper that we send home with them or next-day follow-up phone calls from nurses or some communication with the care partner that’s in the home with the patient, I think that then we can logically apply those to other patients with cognitive or learning disabilities, and I would guess that those would probably be effective. But we’re a long ways from there, because we don’t even know what works in persons living with dementia yet.

Dryden: When a person living with dementia comes to the emergency department, are they generally coming from the community or from a skilled nursing facility? And does that make a difference in what you do in the emergency department in terms of where you send them? Are you more likely to keep somebody who would be in the community and not have anyone to take care of them once you know they’re demented?

Carpenter: Most of the aging Americans over age 65 do not live in nursing homes. Most are in the community, and most who come to the ED who are older adults are coming from the community and not from nursing homes. It does make a difference sometimes for our disposition if they live at home and they’ve got no social safety network, no access to transportation, and limited access to primary care. That may be a tipping point to have us keeping them in the hospital just to accelerate whatever post-ED care needs to occur. Many of the patients who come from nursing homes come because the nursing home or the advanced-care facility feels like they can’t manage whatever the patient’s condition is right now. And so we need to figure out if there is a medical emergency that requires inpatient care and then communicate back with the long term-care facility what our findings are, what we think the prognosis and the treatments are going to be, and then see if the long term-care facility can handle that. It really depends on the long term-care facility. So we have a lot to learn there.

Dryden: As with many things that involve aging, we’re early in this process. The population’s getting older and older and older. So I’m guessing that the problems that you are identifying and dealing with on a day-to-day basis are going to get more and more and more common.

Carpenter: I absolutely anticipate that we’ve just seen the tip of the iceberg in 2023. For the last six years, we’ve had about 10,000 Americans every day turning 65 as the baby boomer bulge passes us by. We already have depleted some of our resources, like inpatient beds. Boarding and crowding is a daily phenomenon now across the United States, not just here in St. Louis. So finding pragmatic ways to deal with these patients other than admit them and doing so in an empathetic and caring way that improves their health-care experience, it’s going to be a challenge. Because I think, like you said, we’ve just seen the tip of the iceberg.

Dryden: On the day we spoke in the emergency department, Carpenter’s main concern involved the patients right in front of him in his pod that day. But when he has the chance to pull back and look at the big picture, he says it’s imperative that emergency medicine specialists learn to get a better handle on helping elderly patients with dementia, who are likely to make up a bigger and bigger proportion of the patients they try to help every day. “Show Me the Science” is a production of Washington U Medicine Marketing and Communications. The goal of this project is to introduce you to the groundbreaking research, lifesaving and just plain cool work being done by faculty, staff, and students at the School of Medicine. If you’ve enjoyed what you’ve heard, please remember to subscribe and tell your friends. Thanks for tuning in. I’m Jim Dryden. Stay safe.

About Washington University School of Medicine

WashU Medicine is a global leader in academic medicine, including biomedical research, patient care and educational programs with 2,700 faculty. Its National Institutes of Health (NIH) research funding portfolio is the fourth largest among U.S. medical schools, has grown 54% in the last five years, and, together with institutional investment, WashU Medicine commits well over $1 billion annually to basic and clinical research innovation and training. Its faculty practice is consistently within the top five in the country, with more than 1,790 faculty physicians practicing at over 60 locations and who are also the medical staffs of Barnes-Jewish and St. Louis Children’s hospitals of BJC HealthCare. WashU Medicine has a storied history in MD/PhD training, recently dedicated $100 million to scholarships and curriculum renewal for its medical students, and is home to top-notch training programs in every medical subspecialty as well as physical therapy, occupational therapy, and audiology and communications sciences.

Jim retired from Washington University in 2023. While at WashU, Jim covered psychiatry and neuroscience, pain and opioid research, orthopedics, diabetes, obesity, nutrition and aging. He formerly worked at KWMU (now St. Louis Public Radio) as a reporter and anchor, and his stories from the Midwest also were broadcast on NPR. Jim hosted the School of Medicine's Show Me the Science podcast, which highlights the outstanding research, education and clinical care underway at the School of Medicine. He has a bachelor's degree in English literature from the University of Missouri-St. Louis.