What It’s Really Like to Travel With Alzheimer’s

0 0 dearJulius.com July 1, 2018 Edit this post

By Cassie Shortsleeve, Condé Nast Traveler

For those who love to explore the world, a diagnosis of memory loss can be devastating—and interpreted as a sentence to stay home. Yes, travel isn't for everyone with Mild Cognitive Impairment (MCI), a memory issue that often leads to Alzheimer’s, or Alzheimer’s itself, especially in the disease’s later stages, when overstimulation can contribute to stress, anxiety, and confusion. But for many people for whom travel is an integral part of life, continuing to do just that can be a means to keep up normalcy—and maintain their passions and hobbies.

“To be a good traveler, you have to be curious,” says 70-year-old Carol Poole, who was diagnosed with probable Alzheimer's five years ago and who has since spent time in Thailand and Cambodia, and just returned from Abacos, in the Bahamas, by boat. “I am that.”

Curiosity benefits the brain, too. “From a general brain health perspective, anything that is stimulating to the mind is generally good,” says Ronald Petersen, M.D., Ph.D., director of the Mayo Clinic’s Alzheimer's Disease Research Center. The “what” of that stimulation varies by person, of course, but visiting museums, learning new cultures, or trying new foods can—for those who enjoy those activities—maximize quality of life. “Mental stimulation is thought to be beneficial for thwarting off the rapid progression of the disease," he says.

For Poole, who used to travel solo but now more frequently goes on trips with her husband and children, travel is just that. “New places and experiences are pleasant challenges for my mind," she says.

Like they do for anyone who travels, trips vary in scope and size for people with Alzheimer's or MCI.

This fall, 75-year-old Darrell Foss of Eagan, Minnesota, will paddle throughout Canada's Maritime region on a guided group trip. Foss was diagnosed with MCI in 2015. “My whitewater trips have come to an end—I just can’t think fast enough to paddle whitewater—but the water is still very relaxing to me,” says the retired CPA and adjunct college professor. Foss and his wife, Mary, have traveled extensively internationally—Paris, Madrid, Gibraltar, and all over Switzerland—since his diagnosis. Mary says she thinks talking about photos they take (churches in Barcelona, the Great Wall) and interacting with new people they meet on their travels help maintain her husband’s mind. Darrell agrees.

"Life continues on. It doesn’t stop because you have a disease."

But the question lingers: Despite the benefits, why travel if there’s a chance that someday, you might not remember your trip at all?

“It’s the joy of being there. I live in the moment. I do what I need to do and what I want to do every single day,” says 63-year-old Pam Montana of Danville, California, who was diagnosed with early-onset Alzheimer’s. A longtime Intel exec, Montana found that visiting company factories in China, Japan, Manila, and Malaysia kickstarted a love of travel years ago. Montana has booked her fourth trip to Florence for the end of the summer.

“Even if I'm not able to remember where we ate a meal, I don’t know if I will forget the experience and the joy of being with friends or getting a first-class upgrade,” she says. Keeping a detailed journal also helps Montana re-experience what it was like to be in a place: the feelings, the foods, the fun. She recently found one from 15 years ago. “I wrote down every drink we had, every restaurant we went to, every meal we ate. I read every word. It was so wonderful,” she says.

Making memories also matters for other people, says Poole, whose two sons have developed her love of travel: “Even though I won’t remember, when we get to those nasty bits at the end, I am leaving a legacy of travel adventure memories, made with those I love.” For travel closer to home, Poole's husband has also built her a tiki bar in their backyard; an oasis when they can no longer travel, meant to replicate the Caribbean islands (she's been to most of them).

Of course, traveling with MCI or Alzheimer's requires accommodations, and anyone who does so should plan extensively, communicate with their doctor, and go with the appropriate support—think a guided small group (Darrell and Mary use EF Go Ahead Tours) or an identification bracelet with the person’s name and relevant phone numbers on it, in the event of separation. Poole, Foss, and Montana have all, in large part, delegated planning duties, including making reservations and booking hotels, to their partners. The Alzheimer’s Association also notes it's important to alert hotels and airlines of any specific needs, and to have a bag of essentials on hand (including snacks, water, and a travel itinerary).

But an Alzheimer’s diagnosis can also lead to other changes in the way people travel. Montana and her husband, for example, used to compromise—sure, we can go there; okay, it's your turn to choose—but now, most decisions lean in her favor. "We make conscious decisions about where we’re going, who we’re going to go with, and how long we’re going to stay there, and I have full veto power," she says.

Adopting a more leisurely pace (lingering in Tuscany a few days longer before heading back to the city, taking a flight that doesn't require you to wake up with the sun) is essential, too. Time zone changes, higher altitudes, or dehydration can bother anyone, but with brain dysfunction, symptoms can crop up more rapidly, Petersen notes.

But, within the right constructs, for someone who wants to continue seeing the world and be reminded of where they've been, there’s a case to be made for the now. You'll enjoy travel more when your brain is functioning the best that it can, which—for people with MCI or Alzheimer's—is sooner than later. “Life continues on,” says Mary Foss. “It doesn’t stop because you have a disease. We live our life the way we have in the past, with some added changes. You just have to keep on moving.”