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Travel tips for a loved one with FTD

  • Writer: Penn FTD Center
    Penn FTD Center
  • Jun 16
  • 3 min read

The Penn FTD Center understands that traveling with your loved one can be difficult. You are entering a new chapter for your family, and we are happy to give you some general travel tips to adjust.


Creating an Itinerary

  • Any schedule is better than no schedule. Create some structure as a starting point.

  • Create a simple, easy to read, simplified itinerary for your loved one.

 

Planning Ahead

  • Pack a bag with everything you may need.

  • Bring medication both prescribed and general first aid or over the counter medications that your loved one may need.

  • Pack a phone charger in case your loved one wants to look at photos on their phone.

  • Pack a fidget toy or an object you know they really like or brings them comfort.

  • Bring extra warm articles of clothing for fluctuating weather.

  • Allow extra time and don’t overschedule.

  • Plan trips or driving during less busy times of the day.

 

Being Flexible

  • Anything can happen. Prepare that you may need to cancel or change plans.

  • Create a backup plan that can include alternate activities.

    • Have both indoor and outdoor options.

    • If all your activities are outdoors, have a few options to locate quiet spaces ahead of time where your loved one can take a break.

    • Don’t over-schedule, allow time for your loved one to rest.

 

Bring Identification

  • Maybe this looks like an ID bracelet for your loved one, just in case you become separated.

  • Carrying medical information or insurance cards.

 

Bring Small Awareness Cards

  • Use the ‘Please Excuse Me’ Cards from the Association for Frontotemporal Degeneration (AFTD) website linked here, which you can print out that allows others to understand behaviors.

 

Scheduled Breaks

  • Everyone needs a break within the day, so does your loved one, which could be more frequent than yours. We all operate differently.

  • Plan for rest, snacks, and bathroom breaks.

  • Pack noise cancelling headphones.

  • Bring water and snacks, which can also help to decompress emotions.

 

Consider an Additional Support Person

  • It takes a village to accomplish things in life, and caregiving does take up time and energy. Coordinate with other loved ones if you can or see if an aide is an option.

    

Maintain Daily Routines

  • Try to stay close to your loved ones’ daily routines. Take those breaks or eat around the same time, even when traveling.

  • Travel to familiar places that involve as few changes in your daily routine as possible.

 

Be Patient

  • Be prepared to repeat what you say.

  • Explain what you or others mean when they speak.

  • Allow yourself to go with the flow, even if it doesn't go as planned.

  • Remember to breathe.

 

Focusing on Quality Time

  • It can be easy to become overwhelmed, but any time you have with your loved ones can be memorable.

  • Enjoy talking, telling stories, and sharing meals.

  • Ask your loved ones how they are feeling and allow them to take space to talk.

 

Ask for Accommodations

  • Notify the airline, rail service, Transportation Safety Administration (TSA) or other travel services, that your loved one has special needs. They can provide accommodations, such as providing a wheelchair. Please see some examples below:

  • Limit luggage so there is less to carry and handle, that way you can assist your loved ones.

  • Book flexible flights or travel insurance in case a cancellation happens.

  • If it is an option, consider paying for the seats closer to the front or near a bathroom.


~ Ashlyn O’Halloran, Clinical Research Coordinator

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