Lessons Learned from Traveling with Dementia

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December 18, 2019 - Emily Ingalls
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As we approach the gate area for our flight, Tracey turns to me anxiously. “You’ll go up and tell them, right?” So, I sidle up to the desk and murmur to the agent, “My companion has dementia. May we board with the early group?” They are always accommodating, and they aren’t supposed to ask, but it makes us both feel better to state ahead of time why two apparently healthy women need to pre-board.

Forgive me. I used to look at the pre-boarding people and scan for frauds who just want to make sure their carry-on luggage gets into the overhead bin. I now understand that not all disabilities are visible.

Travel is stressful and confusing for people with dementia, and it can be overwhelming for their care partners. A retired Episcopal minister and city planner, Tracey was diagnosed with the early stages of Frontotemporal Degeneration in 2016. Her response to travel and increasing need for recovery thereafter have become two of the markers we use to gauge the progression of this disease. Traveling requires extensive effort and planning, far more than it used to, and there will come a point when it just isn’t feasible anymore.

According to UsAgainstAlzheimer’s Fall 2019 Pulse of the Community online A-LIST survey results, nearly half (48%) of dementia caregivers “found that a loved one had been afraid or overwhelmed by unfamiliar surroundings, and nearly four in 10 (38%) said a loved one had become anxious in a crowded place, triggering an unexpected behavior. In addition, 38% of caregivers said their loved ones could no longer physically handle traveling and vacations.”

Frontotemporal Degeneration (FTD), although rare overall, is the most common form of early-onset dementia, and it messes with the part of the brain that contains one’s filter, blocks background noise, and prioritizes information. Normally, our brains sift through lights, sounds, and other distractions that compete for our attention. Our frontal and temporal lobes are responsible for telling us what behavior is appropriate, helping us judge whether or not we are in trouble and then deciding what to do if the answer is yes.

Imagine it’s Thanksgiving weekend, the busiest travel days of the year, and you are sitting in the sports bar at the airport. The bartender is moving around making drinks, talking to the guy next to you, and the waiter is walking back and forth behind you. The busboy clatters past with a load of glassware. There are four screens with four different games going.

Outside in the terminal corridor, the PA system is announcing flights boarding and passengers gone missing. A family with three small children and a screaming baby hurries past, having been delayed in the TSA line when the toddler refused to go through the metal detector. If your brain is in working order, you can tune out most of this and focus on Ohio State vs. Michigan.

If you have dementia, you can’t.

Everything comes at you with the same intensity at the same time — all of it, the screaming baby, four games, “welcome to our city, please watch your bags.”  So, of course, your mind explodes. You go into a fetal crash position, arms over your head, hands on your ears. You want to cry and run away, but you don’t know where you are or how to get out of there. And your beloved care partner is staring at you, praying for divine intervention.

Traveling with early to mid-stage dementia does not have to be this way.

It is not as much fun as it used to be, but it is possible to get where you need to go without getting shredded in the process. Tracey and I run the airport gauntlet two or three times a month, and we have learned how to continuously adapt our expectations and plans to our abilities. It requires thinking through the entire process, door to door, ahead of time, trying to envision potential obstacles and worst-case scenarios — weather delays, longer lines than expected, missed connections — and how we might deal with them. 

Between the onset of brain disease and the late stages in a skilled nursing unit, there are a lot of years when bucket list items are still possible, and shared experiences can still be enjoyed. As dementia advocates, Tracey and I are committed to sharing the truth and spiritual insights we’ve gained from a life complicated by dementia with as much of the world as possible, for as long as possible. So we travel. A lot.

Below are a few of the tips and tricks we’ve picked up along the way.  I hope you will share your own in the comments below.

Emily’s Tips for Tranquil Travel

The goal is to get where you are going as smoothly as possible, with as little fuss and anxiety as possible.  Anxiety undergirds dementia even on a good day.  Travel is unlikely to be a good day.  Give yourselves enough time to get through security calmly, yet minimize waiting time at the gate, to board the plane early and settle in while it is quiet, and then to disembark as quickly as possible when the plane lands.

Travel with dementia takes more time and costs more money.  Our days of running for the plane with 20 minutes between flights and changing terminals are over.  These days, we plan ahead to decrease stress:

  • Fly at a less busy time of day, one that allows time to get out of bed at a reasonable hour and follow your usual morning routine as much as possible.
  • Book a direct flight whenever possible.
  • Pay for seats closer to the front with a little extra space and fewer distractions.

Airport Security is a perfect recipe for a dementia meltdown — chaotic, crowded and noisy.  TSA pre-check helps, as does Clear if you travel often. 

  • For people who are more disabled, there is TSA Cares.  (855) 787-2227.  Call 3 days ahead and tell them you are bringing someone who has dementia. They will meet you on the entry side of security and help you through. Some fine print is involved, which you can find here.
  • Whichever security screening line you choose, make sure the two of you are together — don’t let anybody butt in between you. The care partner should go through the metal detector first. This allows you to catch your spouse before she wanders off into the concourse and disappears, leaving her belongings behind while you are still being patted down at the checkpoint.

Waiting for your flight also requires a strategic game plan. Once you have made it through security, you may have some time to kill before your flight boards. Find as quiet a spot as possible. If you have access to the airline club, that’s your best bet, but an unused gate area or the back of a coffee shop is also good. Find a place where you can’t see the screens, set back a bit from the concourse. Leave that spot when you have just enough time to saunter to your gate, arriving about five minutes before boarding begins.

When boarding is called, don’t be proud:  go with the first group, the ones needing extra time or assistance.  Get behind your companion, making sure she knows what seat she is in.   It gives you an opportunity to slip one of your dementia cards (see below) to the flight attendant.  Get your companion settled in a window seat, shade down, headphones on and playing her favorite music or movie on a tablet. 

After you arrive at your destination airport, arrange for an easily identifiable location for your family to pick you up or take a car service or a taxi.

Do not opt for two trains and a bus to your lodgings unless you and your partner have both spent years riding those two trains (or ones that look just like them -- see “perfect recipe for a dementia meltdown, above).

One last thing: I know you love your family/college roommate/fraternity brother and have stayed at their house before, but things are different now. Your companion and you need a private room and your own bathroom. If that is not available, book a room at the hotel down the road. 

Now that you have gotten yourselves where you are going, greet everyone, and then go to your room, shut the door, and take a nap. You both will need it.

About the Author

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Emily Ingalls

Emily Ingalls is the primary care partner and Chief Logistics Officer for spouse Tracey Lind who was diagnosed with Frontotemporal Degeneration (FTD) in 2016. She is responsible for managing a life and home and retirement plans turned upside down by dementia. Together, they share good times and bad through speaking engagements and an online blog/newsletter at TraceyLind.com