People Living with Dementia and Exposure to Natural Disasters

How extreme weather events are affecting healthcare use for older adults with cognitive impairment with Sue Ann Bell, Ph.D.

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Extreme weather and weather-related disasters are becoming more and more common. Unfortunately, disaster related disruptions in healthcare tend to affect the most vulnerable of populations – including older adults living with cognitive impairment. In this episode, Matt & Donovan speak with University of Michigan faculty member, Sue Anne Bell, about how healthcare disruption due to a disaster can affect the population of older adults living with dementia. 

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Transcript

Matt Davis:

The earth is changing, temperatures are rising and extreme weather events such as tornadoes, tropical cyclones, floods, and heat waves are becoming more common. It's estimated that the number of disasters related to severe weather have increased by a factor of five over the last 50 years. When we consider the devastation caused by a large-scale disaster, the focus typically is on the immediate effects of the storm, things like death and injury and the financial toll to communities. But the effects of storms can persist long after the television cameras have moved on. In fact, it can take months or even years for communities to regain important infrastructure, including healthcare facilities, and less advantaged communities may never fully rebuild. Unfortunately, disaster-related disruptions in healthcare probably affect the most vulnerable groups the most, including older adults with a cognitive impairment who rely on consistent caregiving and healthcare. In this episode, we'll speak with a researcher who's looking at how healthcare disruption due to a disaster can affect the population of older adults living with dementia. I'm Matt Davis.

Donovan Maust:

I'm Donovan Maust.

Matt Davis:

Your listening to Minding Memory.

Today we're joined by Dr. Sue Anne Bell. Dr. Bell is an assistant professor in the Department of Systems, Populations and Leadership at the University of Michigan School of Nursing, and she's a faculty affiliate of the Institute for Healthcare Policy and Innovation. She's a family nurse practitioner by training and a health services researcher who has a background in disaster response. She's an active member of the medical response team through the US Department of Health and Human Services National Disaster Medical System. Her research focuses broadly on the health effects of disasters and the relationship between community resilience disparities and health outcomes. She's published extensively on the effects of disasters on older adults and more recently on those living with dementia. Sue Anne, welcome to the podcast.

Sue Anne Bell:

Thank you for having me.

Matt Davis:

Dr. Bell was the lead author of a study titled Mortality Following Exposure to a Hurricane Among Older Adults With Dementia that was published in JAMA Open. The study used Medicare data to examine how exposure to a major hurricane affects mortality in the months following the storm among the vulnerable population of older adults living with dementia. We'll make sure to include a link to the study attached to this episode. So obviously this is not an environmental science podcast. So just to kind of start things off, could you tell us a little bit about how disasters are defined in the sort of work that you do?

Sue Anne Bell:

Sure. There's a simple definition that I use, which comes from the International Federation of the Red Cross and Red Crescent, a major disaster and humanitarian response organization. And that's when a hazard meets a vulnerability and exceeds the capacity of the community to address the combination of the hazard and the vulnerability. So when we think about what that means, the hazard itself is something like a hurricane or flooding. It could be some major infrastructure failure like loss of power, and the community isn't able to address that vulnerability and their ability to address it is exceeded. That's what we call a disaster.

Matt Davis:

I know you have some thoughts about the term natural disaster, which sometimes I'm always tempted to say, is that an appropriate terminology?

Sue Anne Bell:

There's actually a Twitter board that will go after you if you use the word natural disaster.

Matt Davis:

I'm so glad I didn't use it in the intro.

Sue Anne Bell:

There's #nonaturaldisasters, avoiding the use of natural disaster as a term, that is a stance that's been supported by the United Nations Office of Disaster Risk Reduction. And that office has actually given a pretty good explanation for why to avoid that term. And a big part of that is because when we think about what a disaster is, quite often a disaster is something that's entirely preventable. It's the hazard itself that's not preventable. So the hazard is something that's natural, but the impact the hazard has on a population is what's not natural. So if we think about Hurricane Katrina, the flooding that occurred in New Orleans after Hurricane Katrina was because of flooding that exceeded the levies. Levies failed, human made levies failed in the city of New Orleans caused this catastrophic flooding. It was entirely preventable, or at least the levee failure and the flooding there. So to call that a natural disaster wouldn't be fair or wouldn't be correct. Just to bring that point home, a hazard is something like a tornado, a hurricane, and the impact that it has on community infrastructure, a population, is what makes it a disaster.

Matt Davis:

It's an interesting conceptual distinction. It makes me wonder, so in theory, if you had a heat wave, if you affected a community that could respond to it and have air conditioning and means maybe it's not a big deal, but a different community maybe doesn't have access to some of those things, it might become a disaster event because of the disconnect between their ability to respond and the infrastructure and all that kind of stuff kind of built into the definition there?

Sue Anne Bell:

That's absolutely correct because there are communities that deal with extreme heat as part of their normal day-to-day life, depending on the season. But communities that are now experiencing extreme heat that don't have those same resources to address it, like last summer there was extreme heat in the Pacific Northwest where there was some large number of documented fatalities and other outcomes we still don't even know about because those communities are now having to learn how to address what would previously been highly abnormal for them and perhaps still is, like extreme heat in Seattle or Portland.

Donovan Maust:

So how do disasters like hurricanes, how are they scored or graded?

Sue Anne Bell:

That's a good question. So from a meteorological standpoint, there's the Saffir-Simpson Scale, a one to five scale that's based primarily or pretty much solely on a hurricane's maximum sustained wind speed. So when you hear like, oh, that's a cat five, we know that that's a hurricane that has a certain wind speed, I think it's above 156 miles an hour, I might need to be fact checked on that. So when you think about a category five, you probably think about, that's a pretty strong, that's a pretty terrible storm that's really just coming from wind speed. But if you know that a wind speed is that high, you can imagine that it's going to cause some pretty significant property damage as well. So it's not like the worst thing to grade, the Saffir-Simpson Scale that we hear about, Jim Cantore tells us about on The Weather Channel, gives us this kind of broad picture of how bad if you will, a hurricane's going to be.

What it doesn't tell us, that rating doesn't tell us about is storm surge, rainfall, flooding, doesn't tell us about tornadoes. But getting back to that, you can imagine if you have 175 mile an hour winds, you're going to also have the associated problems like extreme precipitation and flooding, tornadoes, things like that. But an important point, so when we think about Hurricane Katrina, which is kind of a gold standard in terms of catastrophic hurricanes that impacted the US. Hurricane Katrina, its max wind speed was 174 miles an hour. So it was a category five, but when it actually made landfall in New Orleans or in Louisiana, it was a category three with winds around 125 miles an hour.

So the point I'm trying to make there is that it can be a lesser storm on the Saffir-Simpson rating scale and still have huge impacts. Hurricane Harvey was another example. It was the wettest tropical cyclone on record in the United States, so most rainfall. Not necessarily the highest in terms of category or wind speed when it hit, but it was really for Hurricane Harvey, it was the amount of rain. Hurricane Florence is another hurricane that we studied as part of the paper we're going to talk about today. It was a category four, so we included it in our analysis thinking of it as this major storm, but it actually weakened considerably before it made landfall and was a category two.

Donovan Maust:

So the magnitude of the disaster isn't really directly correlated to the intensity that a meteorologist might use to score the intensity.

Sue Anne Bell:

Right. I think that's a fair thing to say. And there's been some other ways to think about the grading of disasters, if you will. And that's the NOAA or the, can I just say NOAA?

Donovan Maust:

National Oceanic and Atmospheric Administration.

Matt Davis:

Nicely done.

Sue Anne Bell:

My mouth does not want to say that. They, I think since 1980, have measured the monetary damage of major disasters in the United States, and they have a worst disaster list by cost. So a billion dollar disaster list. And that's something that we've thought about a lot in our work. We can think about the actual weather related effects of a disaster or we can think about the amount of damage in terms of the financial cost of a disaster. So we've looked at it kind of both ways in some of our work.

Matt Davis:

So it seems like just paying attention to the news, like it seems like hurricanes are becoming more common, but I know there's a little bit of controversy around that.

Sue Anne Bell:

I think there's been some recently published work that shows that actually hurricanes are not necessarily increasing in frequency, although they do seem like they're more severe. And then there's been some other work that's kind of refuted that. So it's a bit of a challenge in terms of trying to quantify the effects of climate change, which when we're thinking about climate change, we're thinking about patterns of weather over decades to centuries versus just weather, which is hurricanes that are happening during one season per se. So there's some discrepancy there in thinking about the frequency and severity of hurricanes. And I think some of that has been looked at globally and some of that has been looked at based on where the hurricanes are happening, thinking like the Atlantic Basin versus in other oceans.

Matt Davis:

So we're going to get to your study in just a minute, but we understand that you're part of the FEMA medical team that responds to disasters. I think people are really interested in hearing some of your experiences with that and what specific disasters you've responded to.

Sue Anne Bell:

Sure. And just to clarify, so I'm on a disaster medical assistance team through the US Department of Health and Human Services, and everyone calls us FEMA responders, but actually we're part of H HS and when there's a request made for federal involvement in terms of healthcare, that request may come through FEMA, but my role is through HHS. So I'm a nurse practitioner on a DMAT or a disaster medical assistance team. And that means I take a couple of months out of the year and when I'm on call I agree to a two-hour notice that notice if there's a disaster that requires federal involvement, that I will be ready to walk out the door in two hours.

And that actually has happened just once. And it involved me flying across the country with a suitcase of wet laundry because I didn't have time to finish drying it because I wasn't prepared like I was supposed to be. So in the past six or seven years, I've deployed to Hurricane Maria and I spent about six weeks in total there setting up and staffing a field hospital and then also working on the cruise ship docks to support the US Navy Ship, the Comfort.

I responded to Hurricane Irma in Florida where we did something called EDD Compression where we supported overwhelmed emergency departments. And that means we get about a two-hour training to the particular emergency department, and then we walk in and start picking up charts to help decrease the volume of patients. I also worked at the Paradise California campfires, which if you remember, had a pretty high and terrible mortality rate there. I worked in Red Cross shelters because there was actually a Norovirus outbreak. So usually people would think, oh, you're at these fires, you're treating smoke inhalation and burns. But actually I was working in infection control and working in an isolation tent with people who are seeking shelter. And then over the course of the COVID-19 pandemic, I deployed, I think around five times working at the Princess Cruise Ship quarantines, taking care of some of the first known individuals with COVID-19 in the US, to working in a small town in Montana as a nighttime hospitalist to supporting a monoclonal antibody clinic in rural Appalachia, and then helping to set up and staff the first FEMA mass vaccination center in Oakland, California.

A lot of very diverse experiences, and that's kind of the hallmark of being able to do disaster response work or loving doing disaster response work, is that you never do the same thing, you're always doing something different.

Matt Davis:

It must be really important for your work in terms of what you see on the ground and bringing that back to your lab and your team.

Sue Anne Bell:

Yeah, I say constantly that my clinical practice informs my research and then my research informs my clinical practice.

Donovan Maust:

So in a slight shift of gears now, actually talking about your research. So Matt, in the introduction mentioned this paper in JAMA Network Open. So the title again was Mortality Following Exposure to a Hurricane Among Older Adults Living With Dementia. So in very broad strokes, could you just sort of tell us what was the big question that you looked at and what were the data that you used to actually look at that?

Sue Anne Bell:

Sure. So our overarching goal of this paper was we wanted to understand what happened with older adults living with dementia after disasters. And this was some initial pilot work where we looked specifically at mortality after three major disasters that kind of varied in where they made landfall, what strength the hurricane was, differences in communities. So we looked at these three major disasters, and we examined patterns of mortality after these three among people with dementia, and compared those two people living in the same communities who didn't have dementia. And to do the study, we used a number of different files in Medicare claims data. We also used FEMA disaster declaration summaries. And so that means we used data from the Federal Emergency Management Agency where they made a disaster declaration, which occurs at the county level.

Donovan Maust:

And so you used say, Medicare beneficiary address information to identify who was exposed to the hurricanes of interest, basically?

Sue Anne Bell:

Basically, doing this at the county level. And we looked at two main things. We looked at monthly and annual all cause mortality among older adults with and without an ADRD diagnosis. And then we looked at annual mortality rates before and after the hurricane and compared those to estimate differences in risk for mortality.

Matt Davis:

So I assume this isn't the first study to look at mortality in the aftermath of a storm like a hurricane. So why specifically did you look at the population of older adults living with dementia?

Sue Anne Bell:

That's a great question. Older adults living with dementia, they have some unique challenges. One of those is a reliance on caregivers, and another is quite often a lack of situational awareness. So because of that lack of situational awareness, there may be, as you can kind of imagine, you're an older adult, you're living at home, your loved one is caring for you, and you may not be aware that there's a catastrophic disaster that is coming your way. And so that puts an extreme amount of stress on the caregiver and also on response systems in that community to support someone who kind of is coming as a pair, the caregiver or the caregiver and the older adult themselves.

And some of what we've found, just in my own response experience, but also what we know from the literature is that there's fairly limited planning and response systems in place for older adults with dementia who also have some very specific needs during a disaster. Leaving your regular home environment to perhaps stay in a shelter or somewhere else can be highly disorienting and can be a challenge for the person living with dementia and also the caregiver to try to adapt to that new and unexpected setting. On top of that is trying to meet healthcare needs in a disrupted setting where healthcare infrastructure, healthcare access, may be disrupted or unavailable, or in the event that you evacuate and go to a new community, a new town where your ability to access healthcare might be much more challenging.

Donovan Maust:

So what were your findings and how did it compare with what your priors were before you did it?

Sue Anne Bell:

I think a couple important things is that we saw this increase in mortality among older adults with dementia when we compared it to people who also experienced a hurricane but didn't have dementia. So that's telling us that it's certainly something that we need to have a better understanding of. I guess what it tells me is in terms of emergency response planning, that there's a need to do better to better support people and families who are dealing with dementia. Another thing that we saw is after two of the three hurricanes, so Hurricane Irma and Hurricane Harvey, which were pretty large and had some huge effects in terms of damage, and Hurricane Irma in particular triggered this massive evacuation response across much of Florida, including my own parents who evacuated, and we saw this spike in mortality around three to four months after these two hurricanes.

A big goal of my research has been to try to understand what are the longer term impacts of disasters on healthy aging. So when we're thinking about response planning, we can think about those immediate impacts like trauma or acute injuries that we need to address, but what's happening in the longer term period. That's something that this study really showed us is that there were some of these immediate effects, but also there was this kind of interesting peak after these two hurricanes where people were really affected.

Matt Davis:

I think that's a really important finding. Most people assume that you'll have the spike in mortality because of the storm itself, but to see that delay, mortality go up several months after. I guess what are your, I know you didn't dig into it too much, but it's a direction that you might go. What are your thoughts in terms of what might explain that delay?

Sue Anne Bell:

One of an ongoing hypothesis of my work is that it's not necessarily the storm, the hurricane or the rainfall itself, but it's the disruption to infrastructure or just your normal pattern of living, which we all kind of saw during the pandemic if you think about it, your normal pattern of living just wasn't normal for you anymore. But in a community that's been affected by a major hurricane, they may have no power for a significant amount of time, an extended amount of time, may not be able to access the grocery store for their normal nutrition needs. Their healthcare provider may have evacuated as well or may be unavailable, and they're reliant on a different, maybe a provider that's not known to them or on kind of episodic emergency care.

If you think about all those things, you have a health problem after a disaster and you're making do or putting band-aids on what some of those health problems are rather than really solving the problem that can lead to a bigger problem down the road. And I think that's really what that spike is telling us is the acute shock of a disaster is manifesting in health problems that we're seeing at a later time.

Matt Davis:

I know that you've done other work where you actually looked at healthcare services after the storm, not just health outcomes. Could you talk about that just briefly?

Sue Anne Bell:

Sure. In the study you're talking about, we looked at healthcare provider availability in communities that were affected by two major hurricanes, so Hurricane Sandy, which affected New York, New Jersey area, and then Hurricane Katrina and the surrounding areas. And we looked over time at were healthcare providers leaving these disaster affected communities over time. And what we found, and I'm going to oversimplify it, is that in communities that were already having social, demographic and economic challenges, they had also less healthcare provider availability over time, not just in the immediate response period, but in the longer recovery period, the communities had more challenges with recovery in terms of being able to just access healthcare.

Donovan Maust:

Did you actually look at specific causes of death?

Sue Anne Bell:

We didn't look at specific causes of death, mostly because we had plans for a larger study, and I should say we have plans for a larger study not had. So we're kind of in process of digging into some of that work that I'm really excited about.

Donovan Maust:

We'll have you back in a couple of seasons to tell us.

Matt Davis:

You did though look at mortality among different subgroups of people. So among people with ADRD or dementia, by different groups, did anything interesting come about from those analyses?

Sue Anne Bell:

There were some interesting findings and we saw that the relative risk of mortality was highest in the oldest, old or in people 85 years or older, which isn't entirely surprising given that it's a more fragile age group in terms of aging and health needs. But also that represents to me an opportunity that this is an age group of people with dementia that need more specific response planning and help with meeting their healthcare needs than other populations. So that's an area that we can target for intervention. We also saw that for people who are dually eligible or eligible for both Medicare and Medicaid, that some of that risk for mortality was higher, and we use that as an imperfect proxy for poverty. So again, a group that may not have the resources to do the kind of planning and preparedness that might benefit them in the event of a disaster.

Donovan Maust:

Was there anything in particular about your findings that surprised you?

Sue Anne Bell:

Honestly, I thought that we would find that mortality was greater than what we did find, and I still think that, so I think that's why I'm really looking forward to the ongoing study that we have as Matt mentioned, looking at causes of death to try to do some more precise work around how people are affected, people with dementia are affected.

Matt Davis:

So I think you already kind of tackled this, but is there anything else, any other thoughts in terms of what's next for your line of work?

Sue Anne Bell:

We're looking to expand what we're doing from this initial paper, and we're looking for more geographic specificity where some of our work is incorporating more precise weather data. We'd like to look more at infrastructure data like power outages and even systems of emergency response, but that's all part of this kind of larger body of work that I'm excited about.

Matt Davis:

This is kind of a weird question at the end. We don't have very many guests on our podcast who understand climate change. So we need to know where's the best place to live for the future to avoid disasters?

Sue Anne Bell:

Supposedly it's Duluth, Minnesota, but I think if you...

Donovan Maust:

That's really specific.

Sue Anne Bell:

Yeah, there's actually information out there about people who are making plans for being climate refugees, and Duluth is one of those cities that's been discussed, although with the recent wildfire smoke that we had in Michigan, and my understanding is that across the Midwest they had fairly substantial air quality issues because of Canadian wildfire smoke. I don't know about Duluth. So Duluth, Minnesota is my first answer there. My second answer is an underground bunker, and then my third answer is probably nowhere. Because we're thinking when we think about climate change about how we can do a better job of adapting to our changing climate, we can do a lot of work to try to halt or prevent the advancing effects of climate change. But at the same time, we also have to be thinking pretty strongly about how we can adapt to our current environments given the hazards that we face.

Matt Davis:

We look forward to seeing where your work goes from here. This is really important and timely stuff. Sue Anne, thanks so much for joining us today, and thanks to all of you who listened in.

Sue Anne Bell:

Thanks so much for having me.

Matt Davis:

If you enjoyed our discussion today, please consider subscribing to our podcast. Other episodes can be found on Apple Podcasts, Spotify, and SoundCloud, as well as directly from us at capra.med.umich.edu, where a full transcript of this episode is also available. On our website you'll also find links to our seminar series and data products we've created for dementia research. Music and engineering for this podcast was provided by Dan Langa. More information available at www.danlanga.com. Minding Memory is part of the Michigan Medicine podcast network. Find more shows at uofmhealth.org/podcast. Support for this podcast comes from the National Institute on Aging at the National Institutes of Health, as well as the Institute for Healthcare Policy and Innovation at the University of Michigan. The views expressed in this podcast do not necessarily represent the views of the NIH or the University of Michigan. Thanks for joining us, and we'll be back soon


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