Airports aren't always 'dementia friendly.' A Minnesota org is working to change that
Carol Giuliani, who is a member of the Dementia-Friendly Airports Working group and works as a travel companion for seniors with dementia, brings in a client from Minnesota at Phoenix Sky Harbor International Airport on Aug. 23.
Ross D. Franklin | AP
This Labor Day weekend, 14 million people headed to America’s airports. Many of us know the terminals, especially on a holiday weekend, are a high-stress environment that can sometimes be hard to navigate. So imagine what it’s like for travelers with dementia or another cognitive impairment.
Right now, most airports in the U.S. are behind the curve in serving travelers with dementia. But a local organization has been working with airports nationwide for several years to change that. It’s called the “Dementia-Friendly Airports Working Grou The founder of that group, Sara Barsel, spoke with MPR News host Cathy Wurzer.
Use the audio player above to listen to the full conversation.
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Audio transcript
INTERVIEWER: Over this labor day holiday weekend, about 14 million people went in and out of America's airports. Now, many of us know the terminals especially on a holiday weekend are a high-stress environment that can sometimes be tough to navigate. So imagine what it's like for travelers with dementia or another cognitive impairment.
Right now most airports in the us are behind the curve in serving travelers with dementia, but a local organization has been working with airports nationwide for several years to change that. It's called the Dementia-Friendly Airports Working Group. Joining us now is the founder of that group Sara Barsel. Sara, welcome.
SARA BARSEL: Thank you.
INTERVIEWER: There's always a story behind how someone got involved with an effort. What's yours?
SARA BARSEL: I run the Roseville Alzheimer and Dementia Community Action Team. And in 2018, Joe Gaugler, who is faculty at the University of Minnesota School of Public Health was at a meeting in Brisbane, Australia. And he sent me an email that said, hey, Sara, the Brisbane Airport is dementia-friendly. What's the status of MSP? If it's not dementia-friendly, why doesn't your group make it happen?
So that was it. It was a request that seemed ridiculous at the time, but we connected immediately with Maria O'Reilly, who is the woman who's the head of the Brisbane Airport effort, and she was willing to and continues to work with us. And there were a lot of people who were interested in trying to make this happen, and so was MSP.
INTERVIEWER: What's the definition of a dementia-friendly airport?
SARA BARSEL: There is no formal definition. So we came up with a working definition. It's an airport that accommodates the needs of people living with dementia and their care partners in a way that enables them to safely and comfortably navigate the procedures required to travel by plane. So that includes being able to use the amenities and resources at the airport, the food, the lavatories, the waiting areas, everything there.
And the airport needs to have clear signage and wayfinding. It needs to minimize visual and auditory stimulation, it needs to have quiet areas, it needs to have readily accessible toilets and adult changing tables, and it needs to pay attention to the environment, so floor surfaces and lighting where possible. There need to be procedures that work for checking in baggage and security.
Airport personnel need to be trained in dementia-friendly processing so that they are able to manage emergencies without having to call in additional staff. It's very important that they learn to never separate people with hidden disabilities, especially dementia, from their travel partners. So they may be care partners, they may be just travel companions who happen to be with them, but it's really important to keep them together when they need airport assistance, or they need to go through something. And--
INTERVIEWER: And I'm curious--
SARA BARSEL: I can go on and on, but--
INTERVIEWER: Oh gosh. That's a lot. That's a laundry list. So how would a TSA or other airport worker know that they're interacting with an individual who's living with dementia?
SARA BARSEL: OK. TSA has special protocols. But not everybody follows them. So one thing that people can do is to wear the hidden disabilities sunflower lanyard. And that is something that you can pick up for free from participating airports. MSP is one of them. There are 80 participating airports in the us right now. And TSA is training its operatives to recognize this.
So if somebody has the lanyard on, they are self-identifying as somebody who needs special assistance, or more time, or some patience in order to go through whatever the protocol is. So that's how TSA would know. But TSA also has several programs.
It has TSA Cares, which is a way that somebody in advance of their travel can notify TSA that they might need special assistance. There also are special cards that TSA has which you can fill out, although they're not especially informative. So there are ways to let TSA know, but it's not always successful. And we are working at getting that to be better.
INTERVIEWER: What are you hearing from the caregivers of folks living with dementia, or even those who are suffering from various forms of dementia, what do they say they really need?
SARA BARSEL: OK. What they really need is to be treated with respect. First of all, when somebody has dementia, they're not invisible and they're not deaf most of the time. So if they are interacting with any airport employee, that person needs to address them. If they're incapable of responding, then you go to the care partner or whoever is the travel companion.
But whatever is being asked needs to be calm and patient. It needs-- if somebody's talking to the individual, they need to face them while they're giving instructions. They need to use simple words and a calm tone. They need to explain what's happening. They may need to demonstrate what it is that they're requesting them to do. They need to allow time for the person to respond.
They need to give advance warning before they touch somebody-- even if it's a friendly touch. They need to try to diffuse the situation by using a different tone of voice or rewording something if they have not gotten the response they want and maybe they've gotten a response they don't want.
And we have videos that have been made by Teepa Snow, who is basically the Mick Jagger of dementia care, and we have them on the dementia airport's website. And anybody can use these. And they show-- they're very short. They show behaviors that might occur at an airport, and then there's a little written piece and then it shows you a better way to interact in order to resolve the situation. So things like that are really useful.
INTERVIEWER: And of course, all this is happening as there's the cacophony around the individual that is the usual airport back and forth and that kind of thing with other passengers.
SARA BARSEL: Chaos, three-ring circus, people who are unhappy. People with dementia-- depends on which dementia and at what stage and all kinds of things, but generally, it is difficult for some of these individuals to stand in line, or to maintain social distance, or to follow directions. And sometimes they have additional problems with balance and following-- if you're supposed to take off your shoes, or do a handstand, or whatever it happens to be.
So the problem is that other people waiting in line behind them, of course, don't know what's going on and are impatient and anxious to get through whatever it is. So it's something which we have argued for in terms of establishing separate security lines, for example, in airports that can accommodate them so that people with disabilities can get through, it's slower, it doesn't hang up everybody who's rushing to make it to the gate. And it works very well in the UK. So it's not something that's never been done.
INTERVIEWER: That actually would be of huge, huge help. So about 30 seconds-- sorry to say this-- but how is MSP doing when it comes to being dementia-friendly?
SARA BARSEL: It's coming along. It has improved its signage. It has adopted the hidden disability sunflower. They did that in 2020, we're thrilled. They have adult changing rooms and accessible bathrooms. That's terrific.
They have just agreed to work with us to develop and present some workshops for people who are anticipating that they're going to be flying, so that people with dementia and their care partners-- or just half of that pair, if that's the case-- can come and learn about what services are available at the airport, how to access them, what they need to do, the whole nine yards, and then they can have a tour through the airport to learn where are the portions that they need to have access to. So we're really excited that MSP has agreed to work with us to present these, and we're waiting for the meeting so we can start working.
INTERVIEWER: All right. I wish you luck, Sara. Thank you so much.
SARA BARSEL: Thank you.
INTERVIEWER: Sara Barsel is the founder of the Dementia-Friendly Airport Working Group.
Right now most airports in the us are behind the curve in serving travelers with dementia, but a local organization has been working with airports nationwide for several years to change that. It's called the Dementia-Friendly Airports Working Group. Joining us now is the founder of that group Sara Barsel. Sara, welcome.
SARA BARSEL: Thank you.
INTERVIEWER: There's always a story behind how someone got involved with an effort. What's yours?
SARA BARSEL: I run the Roseville Alzheimer and Dementia Community Action Team. And in 2018, Joe Gaugler, who is faculty at the University of Minnesota School of Public Health was at a meeting in Brisbane, Australia. And he sent me an email that said, hey, Sara, the Brisbane Airport is dementia-friendly. What's the status of MSP? If it's not dementia-friendly, why doesn't your group make it happen?
So that was it. It was a request that seemed ridiculous at the time, but we connected immediately with Maria O'Reilly, who is the woman who's the head of the Brisbane Airport effort, and she was willing to and continues to work with us. And there were a lot of people who were interested in trying to make this happen, and so was MSP.
INTERVIEWER: What's the definition of a dementia-friendly airport?
SARA BARSEL: There is no formal definition. So we came up with a working definition. It's an airport that accommodates the needs of people living with dementia and their care partners in a way that enables them to safely and comfortably navigate the procedures required to travel by plane. So that includes being able to use the amenities and resources at the airport, the food, the lavatories, the waiting areas, everything there.
And the airport needs to have clear signage and wayfinding. It needs to minimize visual and auditory stimulation, it needs to have quiet areas, it needs to have readily accessible toilets and adult changing tables, and it needs to pay attention to the environment, so floor surfaces and lighting where possible. There need to be procedures that work for checking in baggage and security.
Airport personnel need to be trained in dementia-friendly processing so that they are able to manage emergencies without having to call in additional staff. It's very important that they learn to never separate people with hidden disabilities, especially dementia, from their travel partners. So they may be care partners, they may be just travel companions who happen to be with them, but it's really important to keep them together when they need airport assistance, or they need to go through something. And--
INTERVIEWER: And I'm curious--
SARA BARSEL: I can go on and on, but--
INTERVIEWER: Oh gosh. That's a lot. That's a laundry list. So how would a TSA or other airport worker know that they're interacting with an individual who's living with dementia?
SARA BARSEL: OK. TSA has special protocols. But not everybody follows them. So one thing that people can do is to wear the hidden disabilities sunflower lanyard. And that is something that you can pick up for free from participating airports. MSP is one of them. There are 80 participating airports in the us right now. And TSA is training its operatives to recognize this.
So if somebody has the lanyard on, they are self-identifying as somebody who needs special assistance, or more time, or some patience in order to go through whatever the protocol is. So that's how TSA would know. But TSA also has several programs.
It has TSA Cares, which is a way that somebody in advance of their travel can notify TSA that they might need special assistance. There also are special cards that TSA has which you can fill out, although they're not especially informative. So there are ways to let TSA know, but it's not always successful. And we are working at getting that to be better.
INTERVIEWER: What are you hearing from the caregivers of folks living with dementia, or even those who are suffering from various forms of dementia, what do they say they really need?
SARA BARSEL: OK. What they really need is to be treated with respect. First of all, when somebody has dementia, they're not invisible and they're not deaf most of the time. So if they are interacting with any airport employee, that person needs to address them. If they're incapable of responding, then you go to the care partner or whoever is the travel companion.
But whatever is being asked needs to be calm and patient. It needs-- if somebody's talking to the individual, they need to face them while they're giving instructions. They need to use simple words and a calm tone. They need to explain what's happening. They may need to demonstrate what it is that they're requesting them to do. They need to allow time for the person to respond.
They need to give advance warning before they touch somebody-- even if it's a friendly touch. They need to try to diffuse the situation by using a different tone of voice or rewording something if they have not gotten the response they want and maybe they've gotten a response they don't want.
And we have videos that have been made by Teepa Snow, who is basically the Mick Jagger of dementia care, and we have them on the dementia airport's website. And anybody can use these. And they show-- they're very short. They show behaviors that might occur at an airport, and then there's a little written piece and then it shows you a better way to interact in order to resolve the situation. So things like that are really useful.
INTERVIEWER: And of course, all this is happening as there's the cacophony around the individual that is the usual airport back and forth and that kind of thing with other passengers.
SARA BARSEL: Chaos, three-ring circus, people who are unhappy. People with dementia-- depends on which dementia and at what stage and all kinds of things, but generally, it is difficult for some of these individuals to stand in line, or to maintain social distance, or to follow directions. And sometimes they have additional problems with balance and following-- if you're supposed to take off your shoes, or do a handstand, or whatever it happens to be.
So the problem is that other people waiting in line behind them, of course, don't know what's going on and are impatient and anxious to get through whatever it is. So it's something which we have argued for in terms of establishing separate security lines, for example, in airports that can accommodate them so that people with disabilities can get through, it's slower, it doesn't hang up everybody who's rushing to make it to the gate. And it works very well in the UK. So it's not something that's never been done.
INTERVIEWER: That actually would be of huge, huge help. So about 30 seconds-- sorry to say this-- but how is MSP doing when it comes to being dementia-friendly?
SARA BARSEL: It's coming along. It has improved its signage. It has adopted the hidden disability sunflower. They did that in 2020, we're thrilled. They have adult changing rooms and accessible bathrooms. That's terrific.
They have just agreed to work with us to develop and present some workshops for people who are anticipating that they're going to be flying, so that people with dementia and their care partners-- or just half of that pair, if that's the case-- can come and learn about what services are available at the airport, how to access them, what they need to do, the whole nine yards, and then they can have a tour through the airport to learn where are the portions that they need to have access to. So we're really excited that MSP has agreed to work with us to present these, and we're waiting for the meeting so we can start working.
INTERVIEWER: All right. I wish you luck, Sara. Thank you so much.
SARA BARSEL: Thank you.
INTERVIEWER: Sara Barsel is the founder of the Dementia-Friendly Airport Working Group.
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