Challenges of traveling with dementia
When traveling with a family member with Alzheimer’s or another form of progressive dementia, it is crucial that the family caregiver recognizes the challenges that person might encounter.
Being aware of these challenges can help family caregivers be better prepared.
Here are some obstacles to consider:
- Difficulty with new environments
Traveling in an unfamiliar and new environment can increase anxiety and disorientation in those with dementia. Disorientation can increase the person’s risk of wandering away and getting lost. An airport full of travelers, busy restaurants or cafes, or waiting in long lines with strangers can contribute to discomfort and even agitation in persons with dementia. For some travelers, unfamiliar sounds, announcements from loudspeakers, and exposure to travelers’ continuous and busy chatter can also be very unsettling and disturbing.
- Time zone changes
Traveling through different time zones can interfere with a person’s ability to maintain sleep routines and can increase confusion. Traveling could also intensify symptoms often associated with sundowning, especially if the individual already experiences increased irritability and disorientation in the late afternoon, early evening, and throughout the night.
- New schedules and routines
Changes in routine, new schedules, and a day packed with activities can increase agitation and negative responses from a person with dementia. This may be particularly evident when unfamiliar activities displace all the daily routines that previously helped keep them focused and grounded.
- Fatigue
Travel fatigue not only impacts the person with dementia but also the family caregiver, who is unable to provide quality care for their loved one due to increased caregiving and travel demands. Lack of assistance and limited rest can interfere with a family caregiver’s ability to focus on their work, leading to a higher risk of mistakes and lower quality of care.
Tips to make travel easier for someone with dementia
- Choose familiar destinations
Identify familiar destinations that bring back pleasant memories for a family member with dementia. Review favorite travel experiences, ask the person to share their fondest memories, and, if possible, review photos together from previous trips. Discussing previous travel events and receiving feedback on the person’s favorite trips can help narrow future travel choices.
- Select favorable travel times
Special considerations are needed when selecting a specific time to travel, especially when traveling with a person with progressive dementia, such as Alzheimer’s. Opting for a time that does not interrupt the person’s daily routines is a benefit for both those living with Alzheimer’s and family caregivers. Likewise, being aware that some people with Alzheimer’s may present sundowning symptoms, such as confusion, emotional outbursts, and irritability, in the late afternoon, early evening, and night can help narrow down scheduling and time options. If a family member is more relaxed in the morning, making morning travel plans may be preferable.
- Make an appointment with a healthcare provider before traveling
The Centers for Disease Control and Prevention (CDC) recommends making an appointment with a healthcare provider at least a month before going on a trip.
Family caregivers should inform the family physician about travel plans and review their loved one’s ability to travel outside their customary area. The physician can review prescription medications and all required immunizations, especially for clients traveling out of state or going abroad.
- Select documents and contact lists to bring
Review and make photocopies of legal documents, such as advance directives, power of attorney, and living will. To verify which legal documents and photocopies you will need, consult an elder law attorney, especially if you plan to travel out of the area with a loved one who has dementia. Always ensure that photocopies and digital copies of legal documents are secure.
To locate an elder law attorney in your area, please visit the National Academy of Elder Law Attorneys (NAELA) website at https://www.naela.org/.
For helpful tips on legal documents for family caregivers, please visit the Alzheimer’s Association webpage at https://www.alz.org/help-support/caregiving/financial-legal-planning/legal-documents.
Be sure to also bring lists of the following: the loved one’s allergies (drugs and foods), doctors and their contact information, and prescription medications and the pharmacy’s contact information.
- Add extra time to travel schedules
Don't skimp on opportunities to relax, take a much-needed break, freshen up, eat, and use the bathroom. Don't pack a travel schedule so tightly that your loved one's care and safety are compromised. Having time to relax and to tend to personal needs can also contribute to a more positive travel experience.
- Include short trial runs while preparing for a trip
Trial runs enable a family caregiver to practice a shorter version of a planned trip. Short trial runs help care partners review the effectiveness of travel plans. If the travel plan is to spend a weekend at a nearby beach, do a practice run to identify the best times to travel, new traffic patterns, available roadside rest areas, and the condition of the beach that everyone on your team is longing to visit. A practice run can highlight which part of a travel plan may need to be modified. Having the chance to practice a shorter version of a planned trip gives the family caregiver and loved one’s hands-on experience and observational awareness. Short trial runs can include a half-day trip to a nearby beach or a train ride to visit long-time friends or loved ones in a nearby city.
- Prepare activity bag
Pack an activity bag for the loved one and include favorite activities, such as crossword puzzle books, travel-size board games, a writing journal/pen, a coloring book for adults, a travel-size sketchpad and pencil, and an iPad or cell phone, so the family member can access favorite music or podcasts. Don’t forget to include two sets of earbuds or earphones. Place activity items inside your carry-on travel bag as well—these activities could be helpful during an unexpected travel delay.
- Prepare carry-on travel bag
Prepare a carry-on travel bag that includes the following: change of clothing, personal care and toileting items, medications, copies of legal documents, physician’s contact information, and emergency contacts. Don’t forget to add a small activity bag to the carry-on travel bag.
- Select hotels with access to safe, secure, clean, and well-maintained premises
Research hotel reviews and ratings, and ask management directly about their hotel security, safety, restaurant services, room service, and accommodations for persons with disabilities. Contact the local police department to inquire about area safety.
- Inform hotel management and staff of loved one’s dementia
When you have identified the hotel you will stay in and are making reservations, inform the hotel representative and/or management that you are traveling with a family member with dementia.
- Identify healthcare facilities and pharmacies in area you plan to visit
Once you have selected your favorite hotel locations, identify nearby healthcare facilities, hospital emergency departments, and pharmacies. It never hurts to have that information available should the need arise.
- Plan activities that meet the individual’s needs and abilities
Select stimulating activities that suit the individual’s needs and abilities. An activity that is overly complex or simple can frustrate or bore a person, increasing the risk of behavioral outbursts. When planning daily activities, ask for the person’s input to help identify projects and activities they personally like and have previously enjoyed. Incorporate outdoor excursions and trip-related projects into the family’s daily plan, while being careful not to overload schedules.
- Incorporate daily routines into travel plans
Review routines before traveling with loved ones, and incorporate some of the most common daily practices and habits into the family’s travel journey. Changing routines can often cause great confusion for individuals with dementia. Try to include some of their favorite activities from home in their travel schedules. If a senior loved one likes to play card games at 4 p.m. at home, incorporate a card game when taking an afternoon break at a quiet café, on the plane, or in the hotel room.
Tips to reduce caregiver stress and to provide safety and support
- Include a dependable family member or trained caregiver on the family travel team
Family caregivers will benefit from including a dependable family member or a licensed and trained caregiver on the family trip. An extra set of hands to assist in caring for a loved one with dementia can provide much-needed support to the family caregiver and reduce stress and fatigue, especially when traveling.
- Enroll in the Smart Traveler Enrollment Program (STEP) for U.S. citizens and nationals traveling abroad
For travel abroad, make sure to have the contact information for the nearest U.S. embassy or consular offices in the country you plan to visit. The caregiver and loved one can also sign up for the U.S. Department of State’s Smart Traveler Enrollment Program (STEP). This free program enables U.S. citizens and nationals to register their international trip with the closest U.S. embassy or consulate. To learn about the important safety benefits of signing up for STEP, please visit https://step.state.gov/.
- Sign up for a wandering response service
Six in ten people with dementia will wander away at least once, according to the Alzheimer’s Association. Wandering can occur at any stage of Alzheimer’s disease. Being in a new and strange environment, especially while traveling, can increase a person’s risk of disorientation, wandering away, and getting lost. If a family loved one with Alzheimer’s tends to wander, it is often recommended they carry identification, such as an ID bracelet with contact information. The Alzheimer’s Association, in collaboration with the MedicAlert® Foundation, offers a 24/7 Wandering Support Program to assist and help identify those who may wander away, become disoriented, and be unable to find their way back. Individuals who sign up for the 24/7 Wandering Support Program are required to purchase a MedicAlert ID bracelet and a yearly membership. The cost of the MedicAlert bracelets and membership plans vary.
- Sign up for TSA Cares
When making airline travel plans that include a family member with dementia, consider signing up with TSA Cares, run by the Transportation Security Administration (TSA). This program offers special assistance for “travelers with disabilities, medical conditions, and other special circumstances” during the required security screening process. For more details about the program’s support and assistance, visit https://www.tsa.gov/contact-center/form/cares.
- Be emotionally supportive!
Words don’t always work, but caregivers can show their support with a kind gesture, a simple hug, a tap on the shoulder, or holding their loved one’s hand. Let them know you’re on their side. Help them feel safe!
Just because a family loved one receives a dementia diagnosis does not mean the person has to stop traveling. Taking a train ride to visit friends or family in a nearby city, going on a short road trip to meet with a new healthcare provider, or flying out of town to attend a grandchild's graduation are all well-justified reasons to help loved ones continue to travel for as long as they are able.
Understanding the travel challenges that a person with dementia can experience and taking steps to reduce the impact of those challenges can lead to a safer and less stressful travel journey for family caregivers and their loved ones.
Should you need assistance in caring for a family member while visiting the Orlando area, contact Senior Helpers. Our trained and experienced caregivers can provide the quality care your loved one needs and deserves. Senior Helpers provides Alzheimer’s and dementia care, respite care, and personal care services in Orange, Osceola, and Seminole counties.
Resources and references:
Wandering; Stages and Behaviors; Alzheimer’s Association; retrieved February 15, 2022, from https://www.alz.org/help-support/caregiving/stages-behaviors/wandering.
Dementia and difficulty with sounds; DementiaUK; retrieved February 15, 2022, from https://www.dementiauk.org/get-support/understanding-changes-in-behaviour/dementia-and-difficulty-with-sounds/.
Sleep Issues and Sundowning; Stages and Behaviors; Alzheimer’s Association; retrieved Feb. 15, 2022; from https://www.alz.org/help-support/caregiving/stages-behaviors/sleep-issues-sundowning.
Know Your Health Status; Before You Travel; Travelers’ Health; Centers for Disease Control and Prevention (CDC); https://wwwnc.cdc.gov/travel/page/BeforeYouTravelInternationally
National Academy of Elder Law Attorneys (NAELA); Finding a Lawyer; NAELA Website; retrieved February 2022, from https://www.naela.org/.
Legal Documents; Financial and Legal Planning for Caregivers; Alzheimer’s Association; retrieved February, 15, 2022, from https://www.alz.org/help-support/caregiving/financial-legal-planning/legal-documents.
Smart Traveler Enrollment Program (STEP), U.S. Department of State; retrieved February 21, 2022, from https://step.state.gov/.
Wandering; Alzheimer’s Association; retrieved February 5, 2022, from https://www.alz.org/help-support/caregiving/stages-behaviors/wandering.
24/7 Wandering Support for a Safe Return; MedicAlert® Foundation, Alzheimer’s Association; retrieved February 17, 2022, from https://www.alz.org/help-support/caregiving/safety/medicalert-with-24-7-wandering-support.
MedicAlert Foundation; https://www.medicalert.org/alz.
TSA Passenger Support, Screening Assistance; Transportation Security Agency (TSA); retrieved February 10, 2022, from https://www.tsa.gov/travel/passenger-support.
Traveling; Alzheimer’s Association; retrieved Feb. 5, 2022, from https://www.alz.org/help-support/caregiving/safety/traveling.