What 's the best way to travel with dementia?

9 answers | Last updated: Jun 08, 2018
A fellow caregiver asked...

I care for a woman with dementia and for the last three years we fly to Florida for the winter months and back to Michigan for the summer. She is very abusive when she does not want to be somewhere anymore; last spring the airplane ride was the hardest as she kept undoing her seat belt and trying to get off the plane, I am having a hard time figuring out the best way to travel with her, she has a very short attention span. I have tried medications the doctor has recommended, but that still has not helped. Any advice would be great.

Expert Answers

Joanne Koenig Coste is a nationally recognized expert on Alzheimer's care and an outspoken advocate for patient and family care. She is the author of Learning to Speak Alzheimer's. Also, she currently is in private practice as an Alzheimer's family therapist. Ms. Koenig Coste also serves as President of Alzheimer Consulting Associates, implementing state-of-the-art Alzheimer care throughout the United States.

Getting from place to place with a person who is pleasant but cognitively impaired is difficult enough but traveling with an abusive dementia patient has an abundance of added difficulties. The most immediate question would be "When is it no longer a viable option to spend winter months in FL?" For most folks with AD, traveling can actually do more harm than good as it leads to increased frustration and confusion. When this occurs, the patient acts out and becomes extremely difficult to manage as you have already experienced. Trying to deal with these issues logically is to no avail since her reasoning power has been dramatically affected by the disease and you can not rationalize with someone who has lost the ability to be rational.

People in the early stage of the disease have often articulated a feeling of great relief when traveling has been eliminated from their schedule. All say that changing venues is very confusing and the confusion sometimes lasts the duration of the trip. Returning home instills more confusion and those who are able have insisted that being in one familiar environment is the most helpful to their level of function. If these trips between MI and FL can not be halted, I would make the following suggestions hoping that some may be helpful:

  • Alert airline staff to her condition
  • Use a medication to 'take the edge off' and to help her rest during the long trip
  • Have another companion or family member accompany you on the trip
  • Bring something familiar for her to look at or hold while traveling - a photo album is good
  • Audio books are often a great means for calming the distraught AD person. Something simple (religious, humorous, etc) work well and comfortable ear phones help block out other sounds that may be adding to the confusion
  • Special little snacks and familiar 'goodies' help promote positive feelings

I wish you well and reiterate that no longer making these yearly excursions will probably be far more efficacious than the change of scenery will. Bless you for your determination to make this a more positive scenario.

Community Answers

Lancer01 answered...

Dear Traveling With an Abusive Dementia Patient,

Been there done that, now add the additional complication that the patient use to be a career pilot and thinks the regular pilot doesn't know what he's doing and wants to go up to the flight deck and have some words with the regular flight crew. I was provided meds by the patients medical provider to help take the edge off the patient in flight should the need arise but I got mixed up with the time zones flying from the East coast to the West cost and the patient came off the effects of his meds from the morning on schedule according to the running time but not by east coast, west coast time. What travellors need to remember is to work off the running clock between meds regardless of what time it is where you are. Also remember to factor in that it might take as much as 20 min. or more for the meds to start taking effect so you might have to give them early so they start working on time. As for everyone elses safety, I would agree that if there is any chance that your patient might become upset during the flight, You owe it to the flight crew and the other passenger to let the flight crew know once you arrive at the aircraft what the situation is. Then the flight crew can help you if something does happen, if the flight crew doesn't know what the situation is, then they have to take the time to figure out what is going on when they could have been helping you...the Sky Marshals will be a little more understanding as well if they know what's going on in advance.

Sincerly, Traveler from Tucson

Cmacp answered...

My 57 yr old husband is developing Dementia/Alzheimer's as a result of a Traumatic Brain Injury 2 1/2 yrs ago. Last Summer, he flew unaccompanied after visiting family. Last month he collapsed from what appears to have been multiple strokes. Since then, I have found that even transporting him from the skilled facility to the Burger King around the corner is dangerous and scary - for us both. He tries to open the car door while in transit. The last trip, he was in and out of the car and the inside of the restaurant - at least a half dozen times, endangering himself because his balance is now terrible. Impulsive, Compulsive,Agitated. He wanted to eat his shake and burger, but seemed unable to control his activity. My heart was in my throat. Our short outing seemed like an eternity. Once back at the facility, he seemed to calm down, and I could finally breath again. I want to give him little outings, but after 3 attempts, I don't believe it is possible anymore. When he travels by Van to Doctor appointments, he is calm. But, once in the doctor's office, he becomes aggitated, - getting out of his wheel chair repeatedly and leaving the office. Also having anger outbursts.

Over the last 2 months, I now see that this is a pattern that he can't control. Prior to the strokes, we traveled to Fl. the previous 2 yrs. I drove, and he was fine. We were in the process of selling our home and relocating there. Now everything has changed. The required relocation car or air trip is now out of the question. His recent change is shocking. I have heard about the loss of memory that accompanies Dementia/Alzheimer's. I was totally ignorant of the additional signs of anger, agitation, and impulsiveness - and that these are aggravated by unfamiliar surroundings and stimulation. Based on my experience, I agree with the poster that the time for the Florida trips may be over.

Muggins answered...

We drove from MI to FL. Of course I did all the driving and we took five days, only traveling from about 11 am to 4 pm each day. Took a walk each day of travel too after arrival at motel. Informed desk staff at each stop re spouse with dementia. Placed a chair in front of door in each motel also.

Because there are so many respite places in Sun City Center, I would hate to pass on going to Florida. Yes, there is confusion. But I constantly remind spouse that "home" is whenever, wherever we are together. That always seems to soothe his anxiety.

I will admit that my spouse is very docile: lucky me. And yes, the new location is confusing to him. But to me the advantages outweigh the disadvantages.

A fellow caregiver answered...

I drove when we traveled and I loved it. My husband also enjoyed sitting there and looking at the scenery. While traveling on the turnpike, he opened the passenger side door! Had he not been buckled in, he would have fallen out! My son disabled the passenger side door and I felt so much better. It worked when I ran in somewhere for a moment too knowing that he could not get out of the car.

Ca-claire answered...

For the 'snow birds' that are travelling between MI and FL, it may be time to relocate to FL permanently. As one of you said, the respite facilities in FL are much more plentiful. It may be difficult to give up your life in MI, but relocation to FL will definitely have more pluses for you as a caregiver, and will stop the torment of your loved one.

For those that do need to travel, rather than speaking with each of the passengers, and possibly causing some embarrassment of your loved one, I would print up on card stock or 3X5 cards the explanation of your loved ones' condition, and give them to those in the seats around you, both in front and behind, as well as giving them to the flight attendants. Give them your loved ones' name and your name, so they may address you as though you've been friends forever. It can be soothing when people know the name of the person with dementia - makes them feel more at home, even though they do not recognize those around them, that is pretty common.

Best wishes to all of you.

Gorilla gaurd answered...

We gave up long distance travel a couple of years ago when my wife's ability to conceptualize time, distance and space. We used to drive cross country every Winter to visit family and to ski. But in Winter of 2010, we were only an hour on the way at the start of a 2,600 mile journey when she accused me of being lost, called me a dumb ass and other expletives. We pressed on, but the trip was unpleasant and stress filled. We tried again opting to go to Maine, a shorter distance and no time zone changes. But it still was not worth the effort. So now we stay close to home.

A fellow caregiver answered...

I would drive my husband and me to Virginia often to visit our grandchildren, He felt comfortable at their house and I had additional help because of my son. One time we were traveling on the turnpike at about 75 MPH and my husband opened the passenger side door and was unhooking his seat belt to get out.. I could not get him to stop. We pulled over so I could regain my composure and kept a close eye on him the rest of the way. When we got to my son;s house, I was still shaking. My son disabled the passenger side door from the inside and it was the best thing ever! I even felt comfortable leaving him in the car if I just needed to run in somewhere for milk, etc. I would open the passenger side to let him out and I had total control at all times. I pass this hint on to anyone who rides with a dementia patent.

Sailon answered...

For driving, disengaging door locks is great idea. Having them ride in the back seat is an option and the rear doors have the child safety controls to prevent opening doors. The biggest issue I have faced is restroom needs where there is no Family type facility. I somewhat prefer the gas station convenience stores like Speedway, that are one person at a time so LO can have privacy and not be distracted or confused. It has been my experience that people today are much more aware of dementia and spot it when they see it and have often offered to assist my wife in the womens rest facility. Several have been caregivers and nurses themselves. This is especially not unusual on road trips to and from Florida from our northern Ohio home.