Tips for safe travel with someone with dementia
How do you travel with someone who has dementia?
No. 1: Learn to count to 10. Slowly. Backward and forward.
No. 2: Bring a companion — preferably someone who has Rule No. 1 down pat.
No. 3: Keep trips as self-contained and wellplanned as possible.
No. 4: Choose a single destination and get there ASAP.
No. 5: Brace yourself for awkward moments involving restrooms, especially if your travel companion is other gendered.
I am not an expert and these are not blanket assertions. I know dementia and travel rarely mix, because people with dementia react poorly to any change in location or routine.
But with an estimated 1 in 9 Americans over age 45 reporting “subjective cognitive decline” — aka memory loss that impairs daily life — dementia is a growing reality for many families, according to the Centers for Disease Control and Prevention. And sometimes even people with dementia need to travel.
The national Alzheimer’s Association reports that more than 11% of Americans age 65 or older have Alzheimer’s dementia, a number expected to more than double by 2050. Its website has several tips for traveling, as do AARP and the Family Caregiver Alliance.
To start, these sites recommend two things: Honestly assess your companion’s ability to travel, and make sure he or she is carrying or wearing some kind of identification in case you get separated. The sites make it clear that your experience will vary depending on the status of your companion’s disease.
I can attest to that. My husband was diagnosed
with Alzheimer’s in 2011, and our travel options have changed dramatically as his disease has advanced. Nonetheless, we have traveled over the last decade by air and auto, beginning in 2013 with a trip to New York and then Europe to see family and friends. It was a kind of farewell tour while my husband could still (sort of ) recognize his siblings.
The trip was not without its challenges. In Frankfurt, Germany, a place neither of us had been, we took a stroll to help us adjust to a new time zone. Throughout the walk, my husband insisted that not only had he visited the town in his 20s but had lived there for nearly a year. It wasn’t until the next day that I understood he thought we were still in New York. Our six-hour plane ride to Germany hadn’t registered.
Which bring us to, in
reverse order, tips on how to handle traveling with someone with dementia:
No. 5: Restroom awkwardness
Parents deal with this all the time, as in a mom dragging her 4-year-old son into the ladies room. It’s more complicated with adults.
The last time my husband used a public toilet alone was two years ago. He walked into a department store restroom, handed his jacket and hat to a man who’d finished washing his hands, and then tried to pee in the sink.
Awkward? Oh yes. That’s why unisex family restrooms were created, right? By now they should be the norm in all U.S. rest stops, department stores and other public spaces. Should be but aren’t, for reasons economic, political and just plain ignoranical, said Tim Pyle, executive
director of the American Restroom Association, which advocates for public unisex toilets.
All-gender restrooms “solve so many problems,” Pyle said, for people who can’t use a toilet by themselves.
Some rest stops have them, some don’t, and there’s no way to tell until you get there.
No. 4: Get there ASAP
People with dementia are confused about everything, including where they are, so traveling is an additional cognitive challenge for them and their caregivers. If you want to take a road trip, I recommend a single, specific destination and keeping stops for the restroom and food to a minimum.
Spontaneous side trips add to my husband’s anxiety because it’s a new situation he must process. What
was once delightful is now frightening and disorienting. We made a beeline to our destination in Washington and saved the little adventures for another day.
Familiar items in the car seemed to help too — in this case his favorite playlists, a few books and our two dogs, who snuggled next to him during the trip.
If you stay with friends or family, make sure they understand the situation. It’s super stressful to share space with people who are freaked out by dementia.
No. 3: Plan, plan, plan
Choose a route ahead of time and plan where you will stay.
Reserve a room and inquire about access. Do you have to walk through many public spaces to reach your room?
Once inside, bar your door — and know that using the chain isn’t enough, as I learned on one trip when we stayed in an old-fashioned motel, with rooms that opened onto the parking lot. In the middle of the night, I awakened to see my barefoot husband open the door and step out into the wintry night. When I asked what he was doing, he said he was looking for the bathroom.
We also brought lots of snacks. The trick is to stave off hunger until you stop for the night, then eat a proper meal in your room.
No. 2: Bring a companion
Having a support person with you makes all the difference between a grityour-teeth trip and a bearable journey. Driving for two days with my friend and my unhappy husband wasn’t a barrel of laughs, but it’s a blessing to have someone who can run interference and is better at counting to 10.
Choose a friend who has a sunny, sympathetic disposition; this is not the time to bring someone who will take sides and feed your often justified need to gripe. Your companion with dementia needs sympathy too.
One relationship tip: If you’re traveling with a “helper” friend, reserve a suite or a second room so they can have some privacy and respite.
No. 1: Count to 10
Full disclosure: I am not a born caregiver. I get impatient a lot, so “Count to 10, backward and forward” is my mantra. I keep repeating it because if I don’t I start shrieking.
Nobody chooses this path, but like it or not, my husband and I are on it together, at least as long as I can manage it.
So, yes, travel is possible. Find your own patience mantra and remember: There’s no shame in seeking the kindness of strangers — and lots of help from loving family and friends.