Gail Gilman, Family Life Consultant, M.Ed., C.F.C.S. and Professor
Emeritus, University of Minnesota
Many people enjoy travel as a form of recreation, relaxation, and an
opportunity to learn. While travel may be a positive experience for most
people, it poses special problems for people with illnesses such as
Alzheimer’s disease, dementia or Parkinson’s disease or injury that results
in disabling intellectual impairment.
People with dementia have ever-increasing trouble with changes of pace,
changes in location, fatigue, groups of people, changes of time zone, and
noise. In a familiar environment, there are many environmental cues that
help a person with dementia to remain connected to reality. A favorite
chair, a well-learned TV control, and a familiar floor plan are taken for
granted.
Unfamiliar places lack these well-known connections and result in increased
confusion, anxiety, and fear. Even places that once were familiar, such as
a winter home, can seem new or alien, triggering fear or anger. Caregivers
who are planning to travel need to plan trips carefully in advance, using
both travel and healthcare professionals to determine the best possible
methods to cause the least distress to your loved one.
The following guidelines can assist with travel planning. Using them can
enhance the success of the trip.
What can be done in case of emergency? Do you know of medical services in
the areas you travel to? Do you need to take special medications with you
in case of agitation? Having a plan can save hours of stress and panic.
What are the care receiver’s limitations and strengths?
As a general rule, the more advanced the disease, the more difficult travel
will be. For example, care receivers who are still relatively independent
and care for themselves will have fewer problems with travel than someone
who requires direction to bathe and change their clothing.
As a rule, someone who requires assistance with bathing, changing clothing,
dressing, and toileting will have significant difficulty even with short,
simple overnight trips. At time when it may be easier for retired people to
visit adult children who work, it may be better to have the children visit
you even if it means paying for their travel.
Care receivers who exhibit any of the following behaviors should avoid
overnight travel unless in an emergency:
* Become physically or verbally aggressive.
* Missed perceptions, have paranoid thoughts, hallucinations, or
delusions (for example, think people steal from them).
* Become confused during or after social outings.
* Wake at night confused.
* Have poorly managed incontinence (or who require special assistance
or equipment with feeding if public dining rooms must be used).
* Have episodes where they do not recognize their caregiver.
* Fall.
* Yell, scream, or cry spontaneously.
* Resist or argue with their caregiver’s directions.
* Wander or pace.
* Demand to leave social settings or restaurants early.
* Are easily frightened, confused, or agitated.
* Are unable to communicate their needs to others.
* Have unstable medical conditions.
Assess the caregiver’s limitations
There are also caregiver-related issues to be considered. Caregivers should
avoid traveling with their impaired person if they (the caregiver) have any
of the following characteristics:
* Become upset or cannot manage well during a crisis.
* Are embarrassed when their loved one acts out or does something
embarrassing.
* Have unstable or complicated health problems.
* Are embarrassed to go into an opposite sex restroom to supervise
their loved one.
* Are unable to manage in high stress situations or with little sleep.
* Insist on maintaining strict honesty and argue with their loved one
about mistakes and missed perceptions.
* Are not able or willing to make significant adaptations during the
trip often at a moment’s notice to meet their loved one’s changing needs,
including canceling the
travel mid-trip.
* Do not think they want to take the trip but will do it for their
loved one.
* Think there will be no change in their loved one’s behavior during
the trip.
* Are not willing to plan well in advance.
* Resist seeking help as needed, thinking they can manage on their
own.
* Think that trips to familiar places (such as an adult child’s home
or cabin) will be ‘just like it used to be’ because it is ‘familiar and
fun.’
The Trip
While travel may be enjoyable, getting to your destination is generally not
relaxing. The following are principles to consider when planning the trip:
* The process of ‘getting there’ should be as short and simple as
possible. Plan a trip that involves as few changes as possible.
* Trips should be to a single destination, rather than a series of
visits. For example, you would want to travel to a wedding and home but not
take three months stopping at friends’ homes along the way.
* Stick with the familiar. Vacation in ways your loved one was
accustomed to before the onset of the disease.
* Consider a shorter trip. Day or weekend trips may be a better
alternative, particularly if you are unsure of your loved one’s reaction to
travel. If everything goes well, go for a longer visit.
* If your loved one has not traveled in six months, schedule a ‘trial’
overnight stay nearby home to see if your loved one can still tolerate
travel.
* Gather necessary papers and documents, including insurance cards,
passports, physician’s phone number, medication refills, and the care
receiver’s medical record. Do not expect your loved one to carry these
documents or tickets.
* Rest periods should be built into the travel schedule. Planning too
many activities, such as meals in a restaurant, can lead to late night
confusion or agitation. Do not plan activities for the night you arrive.
* Save travel for your loved one’s best time of day.
* Use services specifically designated for people with disabilities.
* Spend as little time as possible in areas with large groups of more
than 20 people, loud noises, or lots of activity (for example, airport gate
areas). Avoid busy places and situations that will cause anxiety for your
loved one.
* Never expect the person with dementia to travel alone. Do not
expect travel employees (flight attendants, gate personnel) to care for or
supervise your loved one. Always have the care receiver carry
identification.
* Expect your loved one to become more confused, agitated, or
behaviorally difficult during the trip. Assist with menus and choices.
* Do not expect other members of a tour to volunteer or be agreeable
if you need help with your loved one.
Advise hotels, airlines, tour operators, or people you are visiting that you
are traveling with someone with memory impairment. Be specific about your
safety concerns and special needs. If you are staying in a private home,
guest home, or bed and breakfast, do not surprise your overnight host with
your loved one’s condition. Explain it fully, well in advance. Do not
think they will not notice. Do not be upset if they feel they cannot handle
the visit, especially if there are children in the home.
* Never travel without a full set of reservations.
* Always provide family members with an itinerary and call home
regularly.
* Make a list of the daily routine and special items you need to take
with you.
* Always have the person with memory loss identified, preferably with
a bracelet your loved one cannot misplace.
* Use good judgment when telling your loved one about the trip.
Discussing it too far in advance may produce anxiety and agitation.
* Be flexible. Have a contingency plan that allows you to leave early
if your loved one becomes ill, agitated, or wants to go home.
* Keep your sense of humor and laugh at all the things that happen.
They will be part of a wonderful memory of your travels together.
* If the trip is prolonged, develop a list of medical professionals
along your route.
* Never leave your loved one alone or ask strangers to watch him/her.
A person who does not know your loved one or the disease will not know how
to react in a difficult situation.
* Avoid traveling at peak travel seasons such as Thanksgiving and
Christmas
* Take medications with you to manage stomach upset, diarrhea, or
other temporary problems caused by changes in food and water.
* Know how to get help and who can help in countries where you do not
speak the language.
* Search the Internet to see if there is a travel agent in your area
specializing in planning trips for people with disabilities. If so, use the
specialized service.