Navigating Air Travel With Dementia

Key Takeaways From TravALZ’s Inaugural Dementia Friendly Travel Seminar

Air travel can be stressful for anyone, but for those living with dementia and their caregivers, navigating airports and flights comes with unique challenges. On July 12, 2023, the nonprofit TravALZ hosted its first-ever Dementia Friendly Travel Seminar at the Phoenix Sky Harbor International Airport, bringing together experts to share advice and resources for smoother travels.

For caregivers attending the seminar, the desire to help their loved ones continue experiencing the joy of travel despite a dementia diagnosis was a common motivation.  Resources for dementia-friendly travel are not commonly known, which was one primary motivation for this seminar being held.  As presenter Jan Dougherty, a Nurse Practitioner, and dementia care specialist, explained, “When I was writing my book ‘Travel Well with Dementia,’ I had a number of clinicians say to me ‘really, Jan, do people travel with dementia?’ And I was like, ‘Well, yeah, my experience in working directly with affected people and their families, they’re telling me about all the trips that they’re making and planning to make.’”

Staying connected to loved ones and visiting meaningful places remain priorities after a dementia diagnosis. With the right planning and support, air travel can still be possible in the early and middle stages of the disease. Here are some key tips for caregivers and people living with dementia from TravALZ’s travel seminar:

 Conference Highlight Video

Plan Ahead and Communicate Needs

• Book flights during your loved one’s best time of day when they are most alert and at ease. Avoid red-eye flights or require waking very early. As Jan Dougherty advised, “This is not the time to shop for bargain flights. This is the time to find flights that are going to work best and allow your loved one to travel during their best time of day.”
• Allow ample connection time; aim for 90 minutes between flights. Travel delays will happen – build in buffers. Dougherty noted, “I would not make a trip with probably less than an hour or two, ideally an hour and a half between connections. I’d rather have too much time than not enough.”
• Request wheelchair services and early boarding when booking with the airline. Be clear about the dementia diagnosis. Dougherty emphasized, “You need to book your wheelchair through your airline. They’re the ones that are accountable for getting it there versus you’re just going to show up and hope for the best.”
• Consider booking accessible parking and asking family/friends to drop-off/pick-up at departures/arrivals to reduce walking and confusion.
• Share travel plans and needs with the airline, TSA, airport staff to get assistance. Alert flight attendants about dementia issues like anxiety or communication difficulties.
• Have contacts and key details (flights, hotels etc) written down for your loved one to reference as needed. Repeated questions will happen.
• Build in plenty of extra time; less rushed = less stressed. Go early, take it slow. Missing a flight creates avoidable chaos.
• Bring supplies to ease anxiety and keep occupied like favorite snacks, music, and puzzles. Noise-canceling headphones can also help. Dougherty recommended, “Bring supplies to ease anxiety like portable snacks, comfort items, [and] music they enjoy easily accessible. This provides distraction and familiarity.”

Know Your Airport Resources

Understanding and utilizing available airport amenities can greatly reduce the strain of traveling. Dougherty, also a Sky Harbor Navigator volunteer, highlighted some key offerings:

• Look up the departure and connecting airport websites before traveling to understand the accessibility assistance available.
• Many airports have ‘Sunflower’ lanyards or their own version (Phoenix has the ‘Compassion Cactus’ lanyard) to indicate hidden disabilities and request extra help or patience.
• Navigator volunteers like those at Phoenix Sky Harbor can guide you through the airport. Phoenix has Navigator volunteers stationed across terminals daily.
• Family restrooms allow caregivers to remain with their loved ones, preventing stressful separations. Phoenix Sky Harbor Superintendent of Customer Service Misty Cisneros-Contreras said, “We see all kinds of reasons that planes have to land and people separated. And that happens a lot in math-related incidents, where ‘I’ve got to use the restroom’ and off they go.”
• Sensory or quiet rooms like Phoenix’s Compassion Corner facility provide calmer spaces to regroup if overwhelmed by the airport environment.
• Notify TSA Cares 72 hours before flying for an agent to assist you through security with procedures and options.
• TSA Stakeholder Manager Kevin Schutzenhofer encouraged, “If you go through and it looks busy, ask an officer ‘May I see a supervisor or manager?’ They can come out and spend a few minutes, talk to you, and find out what your needs are.”

Frequently Asked Questions (FAQ)

My loved one with dementia gets very anxious about air travel. What can I do to ease their stress?

• Here are some tips from seminar presenters to help minimize anxiety for your loved one when navigating the airport and flying:
  • Thoroughly explain plans and procedures in simple terms beforehand
    • Repeat key details like flight times. As Jan Dougherty said, “Preparation and communication are so important. Explain things simply, repeat critical information about flights, times, etc.”
  • Have portable snacks, comfort items, and music they enjoy easily accessible.
    • This provides distraction and familiarity.
  • Request wheelchair assistance even if not always needed.
    • It offers a structure that ABM‘s General Manager Julie Winn notes can prevent rushing or getting lost.
  • Ask flight attendants for help accommodating needs like more beverage service, gentle reminders about staying seated, etc.
  • Consider a mild anti-anxiety medication prior to travel with doctor approval.
    • DO NOT try any new medication for the first time the day of your travel.
  • During the flight, try to remain calm yourself. Your own stress and frustration can heighten your loved one’s unease.
    • As Jan Dougherty advised, “If you’re anxious, they’re more anxious. If you’re frustrated, they’re more frustrated.”
  • Build in moments to stop and take a break when feasible.
    • Sit down together and breathe before proceeding.

Are there any additional tips?

• Attach a locator tag like Apple AirTag to your loved one in case you get separated.
• Take a current photo on your phone too the morning of your travels.
  • Jan Dougherty suggested, “I recommend on the day you travel, take a smartphone picture of your loved one in case you get separated. I can’t remember what my husband was wearing when he left the house!”
• Alert connecting flight attendants about dementia if continuing travel alone to help ensure safe transit.
• Request specific jetway or tarmac wheelchair assistance if needed for getting on/off aircraft with limited mobility.
  • Misty Cisneros-Contreras explained, “We have team members [at the Sky Harbor Airport] that can escort them from the gate down to baggage claim and help guide them wherever they need to go.”
• Consider paying for a family member or professional travel companion to accompany you if that eases concerns.
  • Jan Dougherty noted, “You might need to have an adult child, grandchild or even a paid travel companion join you to ensure your person stays safe.”
• Share diagnosis and needs with destination pick-up contacts (family, drivers) to facilitate smoother airport exits.
• Use a companion card from the Alzheimer’s Association to discreetly notify staff or others if challenging behaviors arise.
  • As Jan said, “If your person is rude or frustrated, you can hand someone the companion card that explains the dementia and ask for patience.”

With dementia rates rising worldwide, airports and airlines are working to improve accommodations and accessibility for these travelers and their caregivers. Resources vary across operators and locations, so doing thorough pre-trip research is essential.

For those in the Scottsdale and Phoenix areas, Cypress HomeCare Services provides experienced in-home caregivers to assist with personal care, transportation, meal prep or respite needs. Visit www.cypresshomecare.com or call 602-264-8009 to learn more about available services that can help you or a loved one looking to travel comfortably with dementia.

Navigating Security with Dementia

The security screening process is one of the most anxiety-provoking aspects of airport travel for many people, especially those living with dementia. Kevin Schutzenhofer, Stakeholder Manager with the Transportation Security Administration (TSA), offered recommendations at the seminar for smoothing the security experience.

Schutzenhofer encouraged travelers to enroll in TSA’s free TSA Cares program, which connects travelers with disabilities to specially trained agents who can guide them through screening. He advised calling 72 hours before your flight to request assistance and provide any information about medications, mobility aids like wheelchairs, or other special needs.

TSA Cares representatives can meet travelers at the security entrance and walk with them through the process, communicating with officers along the way. Schutzenhofer explained, that a “passenger support specialist will talk to you about when you’re flying, what you will need, where to meet. They’ll get you and say ‘Okay, we’re going to go through screening, this is what we’re going to do.'”

Even without enrolling in TSA Cares beforehand, Schutzenhofer encouraged travelers to approach officers and ask for assistance or a supervisor if feeling anxious or confused by the security procedures. “Just have to ask an officer, if you could see a supervisor or manager, they’re happy to get that…and find out what your needs are.”

For travelers bringing medications, he noted they do not need to bring medication bottles or documentation, only the dosage needed during the flight. The key is communicating needs clearly to the screening officers.

Schutzenhofer acknowledged air travel can be disorienting, with so much happening beyond one’s control. But he pointed to helpful resources like TSA Cares, airport navigators, the Compassion Corner, and diligent preparation as ways to smooth the journey. “When you respond in a calm, pleasant way, isn’t that amazing how human behavior works?” Schutzenhofer remarked. “Keep that smile on your face. Because if you keep smiling, your brain will follow.”

Airport Amenities to Utilize at Phoenix Sky Harbor

In addition to TSA Cares, travelers living with dementia can benefit greatly from several other programs and services available at Phoenix Sky Harbor International Airport. Below are a few options highlighted by airport speakers Misty Cisneros-Contreras and Heather Shelbrack:

1. Navigator Volunteers – The airport has over 150 navigator volunteers wearing purple jackets stationed in terminals daily who can provide directions or guidance. Customer Service Navigators manage information desks while Navigator Buddies handle the Pet Therapy dogs that roam concourses.
2. Wheelchair Assistance – Travelers needing mobility help, even intermittently, should request wheelchair services when booking with airlines or ask airport staff. Julie Winn, a Lead Agent with American Airlines, encouraged sharing specific needs to ensure proper wheelchair and seating accommodations.
3. Compassion Cactus Lanyard – Phoenix Sky Harbor created these green lanyards to indicate hidden disabilities and request additional assistance or patience from staff. They are free to pick up in the airport’s Compassion Corner facility.
4. Compassion Corner – Located in Terminal 4, this facility has a quiet sensory room, chapel, and helpful airport staff to answer questions about accessibility services.
5. Passenger Paging – Travelers can provide information to be displayed on airport screens about any accessibility needs to assist staff in accommodating them appropriately.
6. Family Restrooms – Restrooms that allow caregivers to accompany their loved ones are available across terminals and help prevent stressful separations.
7. Online Resources – The airport’s website skyharbor.com has detailed airport maps/guides, accessibility information, and upcoming construction alerts to aid trip planning.

Cisneros-Contreras summarized the airport’s commitment by stating, “Our volunteers, our purple jackets, they are here to help you. That is their sole purpose.” Preparation and awareness of resources can make an immense difference in navigating the airport with dementia.

Maintaining Realistic Expectations

Despite extensive preparation, patience, and flexibility are still required when traveling by air with dementia. Flights get delayed, weather intervenes, and unpredictable challenges arise. Rigid adherence to an idealized “perfect” trip only creates stress when the inevitable hiccups occur.

Jan Dougherty captured this insight when she remarked, “If you’re not flexible, you should probably never travel. Things happen that are completely out of your control.”

Similarly, Kevin Schutzenhofer acknowledged the disorientation many feel in airports but encouraged stopping to ask for assistance when needed. He observed, “When you go to the airport, you don’t know where your tickets are, what’s in your pockets. Don’t get afraid – ask for help.”

By maintaining realistic expectations about travel uncertainties, caregivers can focus more on reassuring their loved ones and creating the best experience possible for them in the moment. With preparation and support, the joy and connection air travel facilitates remains achievable with dementia.

Aging in Place with Dementia/Memory Care

For those in the Scottsdale and Phoenix Metropolitan area, Cypress HomeCare Solutions provides experienced in-home caregivers to assist with personal care, transportation, meal prep, respite needs, and more. Visit www.cypresshomecare.com or call 602-264-8009 to learn more about our services that can help you or a loved one either age in place, or travel comfortably with dementia.

Watch the full seminar video here: