Families caring for a person with Alzheimer's need a vacation, too

In September, Lyle and Geraldine "Jerry" Isenor watched the harvest supermoon sink behind the rooftops of Sandnes, Norway, from their room aboard a cruise ship.

The Isenors, a couple in their 60s living in British Columbia, have been to French Polynesia, New Zealand, the Caribbean and Africa, but these days their trips are as much about self-care as seeing the world. Jerry was diagnosed five years ago with Alzheimer’s disease and Lyle is her main caregiver.

Like Lyle, more than 11 million Americans provide unpaid care for a family member or friend with Alzheimer’s or other dementia, a contribution to the nation valued at nearly $350 billion, according to a 2024 annual report published by the Alzheimer’s Association. The work is often stressful and time-consuming, and 60 percent of the report’s survey respondents say the U.S. health care system is not effectively helping patients and their families navigate dementia care. Vacation time, let alone travel, is often not possible, but some options are starting to appear.

Reflecting on his experience taking a customized cruise for dementia patients and their families, Lyle, who previously worried about Jerry wandering off when they traveled alone, wrote via email, "The benefit for me as a care partner is that I get to experience travel at all."

Nurses and groups start to create travel options

Families in the United States lack options for dementia-friendly travel compared with those in other countries.

"It’s such a different paradigm" said Jan Dougherty, a dementia nurse in Arizona who is CEO of TravAlz, an organization that offers advice about such travel options. "They put money in care. We put money in pharma."

For example, a British nonprofit organization called Dementia Adventure offers what it describes as "small-group holidays and individually tailored breaks for people living with dementia and the people who care for them." Its services include financial aid, 24-hour support and planning that includes locations and meals.

Those yearning for a fuller life with Alzheimer’s or other dementia represent a diverse cross section of Americans, as the Alzheimer’s Association report detailed. Twice as many Black adults receive a diagnosis as White adults; Latino adults are 1.5 times as likely to be diagnosed as White adults. The total population of people diagnosed with Alzheimer’s alone is expected to double by 2060 to nearly 14 million people, according to the Centers for Disease Control and Prevention.

"What’s needed are entrepreneurs who care about dementia, who are passionate about creating travel opportunities to support this growing group of people," Dougherty said. "Most people living with dementia will have up to three to five years, or more, of travel experiences if we focus on the care side to help them."

To help make that happen, she runs a travel-companion certification program with Carol Giuliani, a senior travel companion. Because medications can prolong dementia’s early stages, Dougherty said, there is more opportunity to live life.

"That’s part of care — what’s meaningful for the person in the moment," she said.

Like Dougherty, Kathy Speer Shoaf, owner of Elite Cruises and Vacations in Hobart, Ind. — and the organizer of the cruise the Isenors took — brings a nursing perspective to her custom-travel concept. Earlier in her career, she was a director of nursing in home health, hospice and senior living. "It just seemed sad to me that the highlight of their day was bingo," Shoaf said. "We need to provide care or support [so care companions] aren’t suffocating with exhaustion."

The cost of providing additional companion support, in addition to the price of the cruise, is $190 per day per person. The extra fee includes trip planning and embarkation-day assistance, a registered nurse on call 24 hours a day, social workers, dementia-experienced caregivers and a lifeguard for shore visits to the beach. When caregivers take time for themselves, Elite’s staffers monitor clients and provide activities such as music or art therapy, games and strolls.

For added safety, travelers wear identification lanyards, which also may contain tracking devices if wandering is an issue. "We strongly encourage caregivers to place tracking devices in these lanyards, in pockets, or even under shoe inserts for extra peace of mind," Shoaf said.

Until more dementia-friendly travel options are available, caregivers have developed a few workarounds. Brenda Roberts, 67, is executive director of the National Council of Dementia Minds and she travels with her husband, Mark, 72, who was diagnosed with vascular dementia 10 years ago. She books accommodations with roomy bathroom counters where she can set out the morning routine, for instance. Mark also carries a card that bears a photo of him with his Bichon Frisé service dog, Sophie. It reads: "Please be patient with me. I have dementia and may take longer to make a decision, need you to repeat yourself, have difficulty following instructions or forget what you told me."

Airports and traveling with Alzheimer’s

Airports, with their many signs, lines and tasks to manage before boarding, are hyperstimulating places. Administrators are beginning to implement changes such as moderating sights and sounds and streamlining terminal logistics.

One impediment is that airports are not nationally uniform, says Sara Barsel, a Minnesota-based volunteer organizer with Dementia-Friendly Airports Working Group. "A handful of airports are trying really hard," Barsel said, instituting family restrooms, for example, which allow caregivers to assist their companions.

Some airports use the Hidden Disabilities Sunflower — typically displayed on a lanyard — which is the internationally recognized symbol to indicate that the wearer has an invisible disability and may need assistance, as well as extra time or patience. The program originated in 2016 at London Gatwick Airport. Today, about 240 airports around the world, including 80 in the United States, participate in the sunflower program.

Elizabeth Edgerly, a PhD clinical psychologist and senior director of community programs and services for the Alzheimer’s Association, witnessed an example of the need for improved travel accommodations on a recent flight to D.C. on which a caregiver had been seated in a different row from her spouse, who clearly had dementia.

"What a difference a seat made," Edgerly said, describing the scene after someone switched places with the caregiver.

Travel is good medicine

On a sunny Sunday in suburban Detroit, Annette and Barry Kaufman — ages 80 and 84, and married for 58 years — sat in their condo dining room recalling a recent cruise to Alaska. Barry’s walker, nicknamed Danica after the race car driver Danica Patrick (in a wink to his less-than-speedy mobility), was parked nearby. Barry has Lewy body dementia, one of the most common forms of dementia.

After he was diagnosed 16 years ago, the couple sold their full-size camper and embraced touring by bus. But on their last motor coach trip, the stops for sightseeing involved too much walking.

"I Googled ‘dementia-friendly travel’ and the cruise was the only thing that came up," Annette said. The cruise, with its staff-to-guest ratio of 1 to 3, allowed the Kaufmans to spend time apart.

"We don’t have the ability to be apart [in daily life]," Annette said. "It was relaxing."

Barry appreciated the respect he received. "They didn’t treat us like people with cognitive issues," Barry said. "I had a buddy, Jim, a member of the staff; he was very human."

Annette said the cruise was life-changing for her. "As the demands for caregiving increased over 16 years, it’s easy to not realize the toll it is taking on you. I was able to experience a level of calm that I had not had in a very long time."