Emergency Care Tips for People with Dementia

dr manish shah
Manish Shah, MD, MPH

Visiting the emergency department can be a challenging experience for individuals with memory loss and their caregivers. Dr. Manish Shah joins the podcast to discuss the difficulties people with dementia face in the emergency department and offers tips for making the most out of a visit. Guest: Manish Shah, MD, MPH, professor, BerbeeWalsh Department of Emergency Medicine, University of Wisconsin School of Medicine and Public Health

Episode Topics:

  • How many older adults visit emergency departments annually? 1:00
  • Why are adults with dementia twice as likely to seek emergency care compared to older adults who don't have dementia? 2:19
  • What are some of the difficulties that people with dementia may experience when they're in the emergency department? 5:10
  • Is there training for emergency department physicians to modify how they approach people with dementia? 7:22
  • Do you have any recommendations to offer that would improve the visit in the emergency department for people with dementia? 9:02
  • What is your team of researchers studying? 13:42
  • What kind of resources do these types of centers bring to your research or research like this? 15:45
  • What do you hope to accomplish with the funding that you've now received? 17:42
  • Why is it important to study and create these resources in emergency departments across the country? 19:24
  • Is there a day or a time that would be better for a person to go in? 20:29

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Show Notes

Manish Shah, MD, MPH, biography on the BerbeeWalsh Department of Emergency Medicine website

We compiled Dr. Shah's emergency department tips into an article, "6 Tips for Emergency Department Visitors with Dementia and Their Caregivers."

Read "Dr. Manish Shah receives research funding to identify ways to improve emergency department visits for people with dementia" to learn about the research grant Dr. Shah talked about in the episode.

Dr. Shah is a return guest on Dementia Matters. Listen to "Telemedicine Reduces Emergency Room Visits for Dementia Patients," released July 30, 2019.


Intro: I'm Dr. Nathaniel Chin and you're listening to Dementia Matters, a podcast about  Alzheimer's disease. Dementia Matters is a production of the Wisconsin Alzheimer's disease research center our goal is to educate listeners on the latest news in Alzheimer's disease research and caregiver strategies. Thanks for joining us.

Dr. Nathaniel Chin: Today's guest is back for a second time on Dementia Matters. Dr. Manish Shah is a professor of emergency medicine at the University of Wisconsin School of Medicine and Public Health and the John and Tasha Morgridge Chair of Emergency Medicine Research. I've asked Dr. Shah to join us today to talk about a recently funded national grant for which he serves as the co-principal investigator. His grant team will study ways to improve emergency care for people with dementia. Welcome back to Dementia Matters.

Dr. Manish Shah: Thanks, Nate. It's great being here and being with you once again.

Chin: So before we talk about your new grant, which is very exciting, I want to talk about emergency care and geriatric patients. How many older adults visit emergency departments annually, and what sorts of concerns are they coming in for? And I'm not going to hold you to specific numbers, but if you could give me just the basics.

Shah: I think this is actually a really great question. And this is what has driven my career and the career of a number of other people who are very concerned about older adults coming to the emergency department. You know, they're about 55 or so million older adults, people over 65 in the U.S., and the last numbers we have are from 2017, where around 25 million ED visits were made by those individuals. They come in for the things that you would expect — chest pain, shortness of breath, abdominal pain injuries, passing out. And those reasons have been fairly stable over the years. The thing is these individuals also are fairly sick. They get a lot of testing, a lot of interventions, and a high proportion get admitted to the hospital after being cared for in the emergency department. So they do truly need this care. It's not a case of people without primary care docs, just wasting the emergency department's time or anything like that. That's really just a myth.

Chin: And so, you know, I've read that people with dementia, now dementia, of course, is more likely as you are older so if you're a geriatric patient, but these people with dementia, they're twice as likely to seek emergency care compared to older adults who don't have dementia. And so why do you believe that happens?

Shah: This is a great question, Nate. The question and the answers are something that have been very interesting to me and my group, and we've actually published a series of papers on this recently. I think of this in a few big buckets, and this is what we've learned by talking to people with dementia, their caregivers, healthcare providers, and others. One is that the healthcare system and the social support system is relatively fragmented, with people not knowing what the others are necessarily doing. This lack of coordination means that really integrated support is not fair for patients and their caregivers, unless the caregiver or a family member is that navigator. And then often small problems can become big problems needing ED care. Another issue is that these individuals don't have the information they need to make the decisions and social support. And if you're lacking the knowledge or access to the information about dementia, medical problems in general, how to get support for the people with dementia, whether it's establishing goals of care or preparing for the future, it again, can lead to small problems that become big problems in the outpatient setting, and then need an emergency department. The final issue really is resource availability. You know, urgent cares and clinics don't have the resources to do a lot of the testing and provide interventions that we do in the emergency department. And also often they're not open when the patients need help. And so they often refer these folks to the emergency department, which is why we ended up taking care of them because we can do what we need to do.

Chin: So those answers, I was writing notes, and it seems like two of those three things are the systems issue. So silos of care, so the fragmented system that we're in; and then the resources within clinics and urgent cares where it's easier, of course, for patients to go to. The third issue you mentioned was really that we are requiring or putting pressure on caregivers to be strong advocates, to understand systems and to navigate them, which is why, of course, a lot of effort goes into empowering and educating and strengthening the caregiver. But really the majority of the things that you've identified deal with just the healthcare operations as a problem.

Shah: One hundred percent. It's why we think about this, at least I think about this at the system level and how we can make system-level model of care changes to help these folks out in the community.

Chin: Even when we do these things, even when we can improve some of these issues, people still need to go to the emergency room, as you mentioned, and that's still a challenge though. So what are some of the difficulties that people with dementia in particular may experience when they're in the emergency department?

Shah: So I think really to understand these challenges, it's helpful to know a little bit of the history of emergency medicine. We as a specialty really came together in the 1970s and very much focused on injuries and acute illnesses. And it was really more about younger individuals because medicine didn't know how to treat diseases as well as we do now and keep people alive through heart attacks, strokes, cancers. Now we've started to care for a lot more patients who are older at much higher rates, as you could tell by the numbers I talked about earlier. Unfortunately, the ED from kind of a structural and process standpoint is still figuring out the best practices, figuring out the best processes, providing the right training as we learn this stuff, to meet these developing needs. So what are the issues? I think there are numerous, but they range from things that are system level, like not having the information we need on patients. If you haven't come to my health system or a system that uses a similar electronic medical record, I may not know what medicines you're on or what medical problems you have. The patients also have complex medical issues that are often hard to navigate in the time-pressured ED setting. The physician and the nurse can only do so much in the time they're in the emergency department, which may necessitate admission or other interventions. The environment also is fairly difficult too — it's loud, there's a lot of disruptions, there are a lot of bright lights and more that it's really unfamiliar. And so that can be very difficult for people with dementia. And also we're still, like I mentioned earlier, learning how to give better care. What can we do with some medications to prevent using some medications? How can we avoid tethers and other things that lead to delirium, and how can we actually develop models of care to support patients without admission.

Chin: And that last point is I think very important, the approach to someone who is experiencing any form of memory or thinking change is likely different than even someone of that same age who has full cognition, full memory and thinking. And is there a lot of training, I mean, do a lot of young, learning emergency room physicians, as well as the older ones who are more experienced in general emergency room care, is there training for them to kind of modify how they approach people with dementia?

Shah: So I think you're really asking two questions there. I think the first question really is do we know that they have dementia or some level of impaired cognition, whether it's dementia or delirium or something else. And that's not necessarily known because of poor documentation and electronic medical record and because of just general processes. In terms of the training question, that's something that's become increasingly added to medical school and residency training, and that's where I think we've had pretty significant improvements. But I think there's still also a way to go. It's not always picked up in the emergency department that a person might have dementia or might have at least some level of impaired cognition. When you spend, you know, 30 seconds, 45 seconds, even 10 minutes with a patient at various points, you may not necessarily pick that up. This is where I think it's a two-pronged problem that we need to really think about and address.

Chin: We've talked about some of the challenges people face with dementia and the emergency department, as well as some of the issues that providers are facing when people with dementia present to the emergency department. But for our listeners who are out there who might be caregivers for people with dementia, do you have any recommendations to offer that would help streamline the visit or improve the visit in the emergency department?

Shah: Nate, I have a number of recommendations for the caregivers of people with dementia to help with the emergency department visit. I think the biggest piece is the caregiver needs to think about this well before the situation. So what does it mean to be prepared? I think one part is thinking about and talking about the health issues and advance, and what's important to your loved one from the standpoint of their health and goals of care. I think a second piece is being organized, having the medication list, doctor phone numbers, including after hour numbers, advanced directives, paperwork, and things like that. And then finally talking to your primary care physician about what to do and what's available is phone call telemedicine, rapid office visit certain urgent care, certain emergency departments that would have more of the records where they would recommend that you would go. I think the second piece comes into what I call a prevention bucket. Really learning about dementia and the illnesses so you know what to expect so that you can also jump on it a little bit earlier. One of the things I see a lot of times is people not recognizing a problem developing and then waiting until it's too late. I think it's also important to know about the resources in the community so you can know what can support you, particularly as the disease progresses. The final piece of that prevention is if something seems off, call your physician early. Some of these things can be taken care of by the primary care physician, and because older adults, particularly people with dementia or other illnesses can get sick quickly if you call early and say, something seems off, they can jump on it earlier. Caregivers are not bothering anyone. This is our job, we love our jobs, and we want to be able to help our patients in our communities. In terms of concretely going to the emergency department, the first question I think about is, Does your loved one need an ambulance or not? There are no rules here, but you just need to think about how sick they seem, how easy or hard it is to get them to an emergency department, and if you need to, call 911, that's why the ambulance providers are there. When you're there, take those documents with you, be prepared for stuff with your loved one, whether it's glasses, hearing aid, what they like to do to calm them down. If it's music, TV, books, whatever. The ED takes time because the interventions take time and the workup takes time. Some of the blood tests take a couple of hours, a CT scan or MRI can take a couple of hours. So bring things that will really help them be comfortable in that environment. Next piece is make sure your loved one is known to have dementia. Often the ED providers don't know that, make sure that they know that your loved one has dementia and make sure they record it in the medical record. There's nothing bad about the disease, it's just important to communicate. And then my final point is when you're in the ED, you're your loved one's advocate and you know them best — fulfill that role. Keep helping, keep them calm, help ask the questions that are need to be asked and help them get the care that they need.

Chin: Those are wonderful suggestions. And I would encourage our audience members who do have loved ones with dementia to go back and actually write those down because I think that's an impressive list, Manish, and I thank you for sharing that. And I think it's really critical for people to hear that from an emergency room doctor to know that preparation really is going to improve this process, education will improve it, but all of those details I think really should be done. And a person couldn't do that with their primary care provider involved.

Shah: And I would add, Nate, that these are comments that were actually made to us by caregivers of people with dementia, by primary care docs, by ED docs, ED nurses, ED social workers, and people who are around this all the time. And so this isn't stuff I came up with on my own, this is stuff that these folks told us that were really important to them.

Chin: It also shows the value of this type of research. This qualitative history collected research, where you actually, we are gaining information from people living this experience, both as providers of care and recipients of care. And I would say the story doesn't really stop there because I mentioned in the beginning of this show that you're a part of a national team of researchers looking for ways to improve the emergency care for people with dementia. So can you tell us about this, this team that recently received funding?

Shah: We're super excited about this grant from the National Institutes of Health, and we have an incredible team. The study is led by one of my colleagues at Yale, Dr. Ula Hwang and me, and we've got key stakeholders from emergency medicine, geriatrics, nursing, social work, representing healthcare systems, clinicians, researchers, specialty organizations, advocacy organizations, caregivers, and most importantly, people with dementia. We consist of people who've really been interested in improving the emergency care of people with dementia. We've been working on the general issue of improving emergency care for older adults for much of the last 20 years. And we really want to focus on this new frontier, which has not had much work done there. What's exciting particularly about this as we have also specialists in Alzheimer's disease, participating through primarily NIH-funded Alzheimer's Disease Research Centers, but then also have key stakeholders from the community, including the Alzheimer's Association, American Federation for Aging Research, the American Geriatric Society, Family Caregiver Alliance, the IMPACT Collaboratory, the Hartford Foundation, and all sorts of other groups. I could go on listing these folks forever, but this cohort of folks working together are phenomenal. They're the experts in this area, and we're super excited.

Chin: I love to hear this long list because it speaks to the main belief within Alzheimer's and dementia care that it really is a team with the person with dementia and the caregiver right in the center. And all of these other people that not only are helpful, but really required to make this a successful system of care. And so I love hearing your funding and your study involve everyone. And you do mention, of course, the NIH-affiliated Alzheimer's Disease Research Centers, which we're a part of here in Madison, Wisconsin. And I'm wondering what kind of resources do these types of centers bring to your research or research like this?

Shah: Nate, I think part of the reason we got this grant is because how closely we integrated with the Alzheimer's Disease Research Centers and the resources it brings to the table. Number one is it brings people with incredible expertise to the table. And so, because we have people from four different Alzheimer's Disease Research Centers involved with this, we have the cutting-edge folks who know the research, know the field and can really weigh in. Another piece that comes to the table out of this is the educational programming and other programming that comes from the ADRCs. That's going to be really critical as we get into the second phase of the grant, which I'll talk about a little bit later, and we can tap into this resource without having to create things from scratch. The final piece, which I think is also important, is that it also gives us access to community stakeholders that we may not necessarily otherwise have access to, whether it's people with dementia or their caregivers, especially through the Care Research Core here at UW, which is the first ever within the ADRC system.

Chin: And so you mentioned, you know, talking specifically about the grant. So what do you hope to accomplish with the funding that you've now received?

Shah: As we talked about earlier, people with dementia use the ED way more frequently than others, and they struggle while they're in the ED. So what we want to do from this grant is to first identify areas of improvement, of emergency care for people with dementia, and then second develop and test strategies to improve the care that we deliver to this vulnerable population. In the first phase, which is the first couple years of the grant, we're going to identify and prioritize these research gaps for people with dementia. And then the second phase, we're actually going to support research to improve the care for people who have dementia. We're going to do this in two ways. One way is we have a lot of grant money available for people to develop these studies and execute them in preparation for big NIH grants. We're going to competitively award over $1 million and partnered research funding to support this type of research. The second thing we're going to do is build infrastructure for these grantees, and in fact, anyone interested in Alzheimer's disease research, and put it out there so that they can focus on What are the best practices in emergency care research, What are the best interventions that we can think about, What are the best questions to be asking? And that I think will be a real resource for people developing this new area of research.

Chin: And so why is it important to study these things and create these resources and the structures that you're doing before changing policies or changing care practices in emergency departments across the country?

Shah: You know, it's, it's ... one of the questions you have to ask is when you're changing a policy or practice, is it going to benefit the patients? And the only way to do that for people with dementia is to do this research and understand what's going on. What applies to kids, what applies to a 20 year old, what applies even a 50 year old, may or may not be applicable to somebody with dementia. And so we need to do this research to know what works. But before we even do the research, we need to know where the gaps are and we need to prioritize those gaps. And that's what we're going to be able to do from this, so that we can take the time and money that's available out there to do research and target the most important things and then just slowly work down the list.

Chin: In essence, it's better to do something correctly once than to miss things in a rushed, hurried way, just because we wanted to make change.

Shah: Exactly.

Chin: So to that end, if a person had to go to the ER, and I know you won't be able to answer this with absolute certainty, but is there a day or a time of day where the wait is the shortest or would be better for a person to go then?

Shah: Nate your question is one that's frequently posed. When should I go to the ED where I'll get the best care possible or the fastest care possible? And the reality is there's no answer to that question. The ED is in general staffed to the volume and acuity of patients that they see; there are more people working at five o'clock in the afternoon than there are at five o'clock in the morning. And the care that's needed occurs. You can't totally predict what's going to happen. It snowed the other morning. I'm sure there were a bunch more car crashes that came in because people were sliding on the snow during our first snow storm of the year, and that'll happen. And that will slow things down a bit potentially because some patients may need more care immediately than others do. What I would really say though is that you want to be sensitive and know what's going on in your health, your loved one's health, or your person with dementia, and jump on it early when you can, so that you can avoid it being a significant illness that might need hospitalization or something else. It could be something that gets handled and then you can go home from that and then come in and get the care then. During COVID, it was really interesting. We had in general, looking at our numbers, maybe about a 40% decrease in ED by people with dementia. And while on one hand, that might be great. Maybe the system worked with the advent of telemedicine, with the increased use of telephone-based care and support that way. But my concern is people just weren't coming in and then they got increasingly sick and then they may have died when it could have been avoided. And so avoiding care is not a great answer. And I would argue that you just want to come in when you need to, don't worry about what the wait might be or the best time or the worst time, because the EDs give great care to patients. They bring in the sickest first and take care of them first. And if you have to wait sometimes, it may just be a fluke, but you'll get great care.

Chin: You didn't answer my question, but I appreciate what you said. Thank you. And with that, I'd like to thank you for being on our podcast. And frankly, I do anticipate having you on when you have some more data for us and some more information to share on emergency care for older adults and people with dementia.

Shah: Nate, thanks for having me because I think this is a great podcast. It's something that I listen to, and hopefully your audience can get some value out of what we talked about today.

Outro: Dementia Matters is brought to you by the Wisconsin Alzheimer's Disease Research Center. The Wisconsin Alzheimer's Disease Research Center combines academic, clinical, and research expertise from the University of Wisconsin School of Medicine and Public Health and the Geriatric Research Education and Clinical Center of the William S. Middleton Memorial Veterans Hospital in Madison, Wisconsin. It receives funding from private university, state, and national sources, including a grant from the National Institutes of Health for Alzheimer's Disease Centers. This episode was produced by Rebecca Wasieleski and edited by Bashir Aden. Our musical jingle is "Cases to Rest" by Blue Dot Sessions. Check out our website at adrc.wisc.edu. You can also follow us on Twitter and Facebook. If you have any questions or comments email us at dementiamatters@medicine.wisc.edu. Thanks for listening.