Traveling with Dementia

This is one of the most difficult posts to write. In order to help others, I need to finally admit aloud that my mother has dementia. This can make traveling difficult. She currently lives with my brother, Doug, in Southern California. I live north of Seattle. Our other brother, John, lives just outside of Denver. Traveling with dementia has become a big part of our life.

Independent with Dementia

First, I want to share with you that recognizing the symptoms of dementia can be difficult. Even for a person like me with a Bachelors Degree in Biological Sciences who did her undergraduate research in Alzheimer’s, dementia and longevity. Recognizing the signs and symptoms often starts with denial. Denial that what we’re noticing is real. To learn more about Dementia click here.

For anyone meeting my mom, she seems perfectly fine. She’s ambulatory and walks up to 12 miles a day. Mom can tell you loads of stories. Longer than an hour, however, she repeats the same story five times and that’s when you notice there’s something up.

She still able to cook, clean and care for herself, but some short term and long term memories are missing. It’s the common sense logic that isn’t there.

Traveling with Mom

Our mother lives with my brother Doug. For a while it was great because he had help watching the kids, but even the most patient pastor can use a break. That means getting mom on a plane by herself.

Before you ask, my mother has traveled a lot on planes over the years because two of her kids and therefore her grandkids live far away. She’s always had to travel to see me and vice versa. At first, we didn’t notice that she needed any assistance. Eventually, she had increasing difficulty navigating from the gate to baggage claim and then from security to the gate.

The Why for My Research

By now even knowing the onset of her dementia, she has flown several times. We only had a few little hiccups along the way as we ‘learned the ropes’. During her last trip, however, the gate agent allowed my mother to leave after a few minutes when my mother said, “I know how to get to baggage claim.” Unfortunately, I was at the ticket counter getting my gate pass without knowing the plane had arrived 25 minutes early. The agent there informed me of their early arrival, called the gate and was told what had transpired. Panic set in. My mother was wandering the airport alone.

Luckily when I wasn’t at ‘baggage claim’, she remembered to call me. In reality, she was standing outside the tram that takes her to the terminal. From there she would need to make her way to baggage claim. I talked her through the process and eventually I saw her at the bottom of the escalator that would take her up to baggage claim.

After this experience I knew that I had to do more research on the airlines that my mother would travel. I needed to know what our options were and how best to make this transition happen for ourselves and other families in the same situation.

There’s nothing my mother loves more than her children and grandchildren and not being able to visit them would break her heart ❤️

Terms You Need to Know for Traveling with Dementia

Accessible Travel Services or Special Assistance: these are the categories that you’ll need to look for on the homepage of the airline you’re choosing in order to locate additional information for those traveling with dementia. Unfortunately, it’s not as easy to locate the information you need as compared to those traveling with children or pets. Strange right?

Special Service Request (SSR): this service allows you to add additional information about the passenger at time of booking. It allows the airline to be aware of the situation before you arrive at the ticket counter to check-in.

Disabled Person Needs Assistance (DPNA): Adding DPNA to a passengers special needs notes guarantees that the passenger will receive service similar to that of a minor traveling alone. As you will see this service is not available on all airlines. This is the best way to identify passangers traveling with dementia.

Meet and Assist: Meet and Assists like wheelchair assistance are the only option available for those traveling with dementia. This means that someone like my mother will walk right past someone standing there with a wheelchair. While Meet and Assist doesn’t have to require a wheelchair most show up with one anyway, leading to further confusion. A designation of Meet and Assist does not receive a guarantee of assistance as compared to someone designated DPNA.

Gate Assist/Gate Escort/Family Member Escort Pass: This is the pass that you can receive at the ticket counter to allow you to go with the passenger through security to the gate and wait until they board the plane. When you check-in your passenger you will want to add the name of the person at the other end. This way they can go to the ticket counter, provide the passengers name and confirmation number to get a gate pass and meet them as they deplane at their final destination.

First, you need to know that the number of passes available is determined by TSA and not the airline or the ticketing agent, so they are not always available for use. Next, you’ll need to remember to bring a valid ID in order to go through security at both ends of the travel. Lastly, make sure to give yourself ample time to get through security into the gate if you are the one meeting the person traveling at the other end.

Cognitive Disabilities: many airlines use this phrase as a generic term to encompass everything that is possible under this category. Unfortunately, not everyone is aware of what cognitive disability means, so when you go to search on the websites for dementia, Alzheimer’s etc. the search engines locate nothing. Frustrating!

Airline Review for Passengers Traveling with Dementia

Below I review the five airlines that I researched. You will find the pertinent information for contacting them and the steps you’ll need to take when booking your flights. Next, you will find easy to follow steps to navigate this information using photos from their websites. Although they may not be the airline that you would have to use, I’m hopeful this information will help you and your family navigate air travel easier.

I started this research by reviewing the information on each of the airlines websites and then speaking directly to a customer service agent. Soon I will be sending letters off to all five airlines letting them know the positives and negatives and asking them to do better when it comes to this community. I am hopeful and I will keep you updated as I learn more.

Alaska Airlines

AlaskaAir.Com 1.800.503.0101

Alaska Airlines is my hometown airline so they were my first call. To navigate their website, locate Help Center at the bottom and select Accessible Services. Once there you can select Developmental and Intellectual Disabilities.

What does this mean? You will see that they are happy to escort you your traveler to and from the gate and between gates. They also indicate that they do not have an adult assistance program and are unable to remain with the passenger. In this case, a meet and assist is your only option to arrange during the booking process. You can also attempt to get a family member escort pass at the time of check-in which may or may not be available. These are the only options on Alaska other than a wheelchair assist.

American Airlines

AA.com 1.800.433.7300

To navigate their website, locate Travel Information next to a Plan Travel at the top, select Special Assistance. Once there locate the category for Cognitive or Developmental Disabilities. There they state that they can assist with getting the passenger on and off the plane and to connecting flights. They do not provide further details except that you can make this request at time of booking.

What does this mean? After speaking with the customer service agent I was told that the only assistance my mother would be able to receive is wheelchair assistance. I was told that this was gate to gate and no further. The agent provided no further assistance other than to tell me to make my complaints to the airline directly. Which of course I will do, duh!

Southwest Airlines

southwestair.com 1.800.435.9792

To navigate their website, locate Customer Service at the bottom of the page, select Special Assistance. Next, you’ll select Customers with Disabilities and then either Assistance in the Airport or Cognitive Disabilities. Both link to the other so it really doesn’t matter which one you choose. Here again they indicate that you can select special assistance when you book your ticket or you can ask for a non-passenger escort pass at the airport.

What does this mean? I was again surprised when I spoke with Southwest airlines that there is no other assistance available for people like my mother than wheelchair assistance. The escort pass is the only other option. There is no information on their website for people with cognitive disabilities or under Seniors. My notes include a “NOT HELPFUL” and an “Attitude” from the customer service assistance. Very disappointing.

Delta Airlines

delta.com 1.404.209.3434

To navigate their website, locate Need Help? at the bottom of the page under Customer Service. Next, you will see a bunch of categories that don’t fit. It’s not until you see that there is a drop-down menu at the top of the page that you will select Other Useful Information. That will take you to Travel with Disabilities or Special Concerns. Tired yet? Next, select Accessible Travel Services which will direct you to complete a Special Services Request form at time of booking or to call them at the above number.

What does this mean? After speaking with the Delta customer service agent under the disabilities category, they informed me that a meet and assist or a gate pass were my only options. They did let me know to make sure to complete a special services request form (SSR) and indicate the passenger is a Disabled Person Needing Assistance (DPNA). This is where you will be able to provide additional information about what the passengers needs are in detail. This is a guaranteed special service and your best option. If you have additional concerns you may also ask to speak to the Customer Relations Officer at the airport.

Jet Blue

jetblueair.com 1.800.538.2583

To navigate their website, select Travel Info. From there Accessibility Assistance is listed under At the Airport. Next, select Intellectual, Developmental or Cognitive Disabilities. Yes! An actual category for Dementia, Alzheimer’s and Down’s Syndrome and it doesn’t assume the passenger needs a wheelchair! The website breaks down all the options available to you. They make it easy to navigate and understand. Essentially, you will need to do a special service request (SSR) indicating that it is a disabled person needing assistance (DPNA) and then provide details about the passenger.

The customer service representative I spoke to, Esther, was extremely helpful. She let me know that there was lots of room for notes to indicate my family members specific issues in detail. This, in turn, will assist the airline in helping make traveling smooth. She said that passenger with DPNA is like an unaccompanied minor. Ester also suggested if you are still not comfortable after booking that the information is clear that you can call the number above and the customer service agent will be able to assist you. Always make sure the information is understand to those at the ticket counter.

My Thoughts about Traveling with Dementia

First, be honest with yourself and with your family members about the level of cognitive issues and your passengers abilities. It isn’t fair to the airlines to expect them to be with your passenger the entire trip. If your passenger can’t navigate tasks at the gate or on the airplane, perhaps traveling alone is not for them. I recommended consulting the passengers physician, getting an updated diagnosis and their recommendations.

Secondly, remember that patience, understanding and respect are the key to safe travel. While your parent may not recognize their issues and want to be independent, keeping them safe is key. Learn how to speak with passengers traveling with dementia as well as how to speak with others when they are around.

Third, remember that often times it may not be the airlines fault when issues arise during travel. Sometimes employees drop the ball. In these cases speaking with the customer relations officer and reporting the incident directly to the airlines helps to improve travel for everyone. Reacting in anger, disrespectful language, and shouts help no one. While your frustration is understandable, take time to hug your family member and get them safely home without added stress. Then deal with the situation.

Don’t forget to get employee names along the way. Names always help the airline train their staff better on how to react in situations like these. Always, praise in public, reprimand in private. Get the names of employees that provide exceptional service as well. Too often airlines just hear when bad things happen. When you have an employee that goes above and beyond to help you or your loved one, send thank yous too!

Kudos

Lastly, I commend JetBlue on their website. They’ve made finding the information easily searchable by using the terms dementia and Alzheimer’s. JetBlue also seems to understand that no two passengers are alike. They make it easy to figure it all out at the time of booking.

JetBlue is also one of the only airlines that provided the direct link to report issues to the government agency responsible for monitoring airlines. The Air Carrier Access Act (ACAA) is the law making it illegal to discriminate against passengers because of physical or mental disability.

We Can Do Better for Our Loved Ones Traveling with Dementia

I sincerely hope that you find this information helpful. Navigating life with dementia isn’t easy. Traveling with dementia is even harder. It doesn’t need to be. Airlines need to know that they can and should do better for our aging population. They need to step up to the plate and make arranging travel easier for those families like mine. We do recognize there will be a time that she cannot travel alone. We get that. Until that time, she deserves our patience, understanding and love.