People living with dementia during natural disasters

The original story was a podcast created by Matt Davis and Donovan Maust. The story has been lightly edited to appear in this article form.

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 considering devastation caused by large-scale disasters, 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 health care probably affect the most vulnerable groups the most, including older adults with a cognitive impairment who rely on consistent caregiving and healthcare.

Sue Anne 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 Health care 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 United States 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.

Recently she was the lead author of a study using 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.

Defining a "natural disaster"
"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," said Bell.

"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."

Bell says nationally and internationally they actually advise not using the term "natural disaster",  and it's a stance also 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. 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."

Take 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."

It's the disconnect between a community's ability to respond and the infrastructure built to help.

"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," presents an issue, said Bell.

"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."

Grading disasters
Bell says from a meteorological standpoint there's the Saffir-Simpson Scale, a one to five scale that's based primarily on a hurricane's maximum sustained wind speed.

It provides a broad picture of how bad a hurricane's going to be.

"So when you hear '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."

What it doesn't tell you, though?

"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 U.S. 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."

Bell explains that the point she's trying to make is that it can be a lesser storm on the Saffir-Simpson rating scale, yet 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 the amount of rain. Hurricane Florence is another hurricane that we studied. It was a category four, but it actually weakened considerably before it made landfall and was a category two."

Since 1980, the National Oceanic and Atmospheric Administration has measured the monetary damage of major disasters in the U.S. with a worst disaster list by cost.

That's a billion dollar disaster list.

"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."

Are hurricanes becoming more common?
Some recently published work shows hurricanes aren't necessarily increasing in frequency, but are appearing to be more severe. But then other work refutes that, says Bell.

"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 she notes that there are some discrepancies 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," Bell explained.

Dementia during, and after, extreme weather events
In Bell's paper "Mortality Following Exposure to a Hurricane Among Older Adults Living With Dementia," her team wanted to understand what happened with older adults living with dementia after these disasters.

"Our initial pilot work 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."

To perform the study, the team used a number of different files in Medicare claims data as well as FEMA disaster declaration summaries.

The study looked at two main things: monthly and annual all cause mortality among older adults with and without an ADRD diagnosis and annual mortality rates before and after the hurricane and compared those to estimate differences in risk for mortality.

But why specifically did they look at the population of older adults living with dementia?

"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," said Bell.

"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."

She says they've found through their work, and personal experience, 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 health care needs in a disrupted setting where health care infrastructure, health care access, may be disrupted or unavailable.

"Or in the event that you evacuate and go to a new community, a new town might make your ability to access health care much more challenging."

In their work, her team saw an increase in mortality among older adults with dementia when compared 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?

They saw after two of the three hurricanes, a spike in mortality around three to four months was occurring in this population.

"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."

What explains the delay in mortality?

"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," said Bell.

But in a community that's been affected by a major hurricane, they may have no power for a significant amount of time, not be able to access a grocery store for normal nutrition needs, their health care provider may have evacuated as well or be unavailable, and now they're reliant on a different provider who doesn't know their history and now handles their 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."

Health care services post storm
Bell's team looked at health care provider availability in communities that were affected by two major hurricanes: 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."

Additional findings
The group also saw a relative risk of mortality highest in people 85 years or older, which Bell says wasn'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," said Bell.

"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."

Bell's group is now looking to expand on their initial paper, looking for more geographic specificity where some of their work incorporates 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 [coming up] that I'm excited about."