Have Dementia, Will Still Travel
With proper planning — including knowing the kinds of resources available — individuals with dementia and their care partners can still enjoy a holiday away
Alan Rae and his wife Joan Connor were bitten by the travel bug decades ago. They spent weeks at a time away from their Calgary home, hiking through mountains in Europe, road tripping through the U.S. and doing humanitarian work with the non-profit organization Kids Around the World.
Then in 2012, Connor was diagnosed with Alzheimer’s disease. But Rae made sure that wouldn’t put a halt to their travel plans.
Today, Connor is living with advanced Alzheimer’s, yet in 2018, the couple spent 23 weeks travelling. They hiked on the rugged Spanish island of Mallorca, snowmobiled in Utah and explored the lush Prosecco Hills in Italy. And those are only some of the adventures they embarked on last year.
Connor and Rae are proof that a dementia diagnosis doesn’t have to mean giving up on your dream trips. Whether planning your first trip away or hunting for ways to make travelling a little easier, these tips will help ensure travelling with dementia is safe, enjoyable and memorable.
Is Travel Right For You?
While routine and familiarity are beneficial for individuals with dementia, Padmaja Genesh, a Learning Specialist at the Alzheimer Society of Calgary, says travel can be invigorating for both the person with dementia and their care partner.
“Travel can offer new experiences and memories,” says Genesh. “Years later, the caregiver can look back on those happy times and cherish those memories.”
However, before planning out a big trip, Genesh recommends that care partners have a clear idea of the individual with dementia’s capabilities and limitations, as well as their own. (See sidebar for questions to ask before planning a trip.)
“Some dementia symptoms would indicate that travelling is not a good option. For example, if the person gets confused and agitated even in familiar surroundings, if the person gets extremely anxious and upset in loud or crowded environments… or if the person has delusions, anger issues, or a tendency to wander away, then travelling can be too overwhelming,” says Genesh. “A high risk of falling, incontinence and multiple unstable health conditions can also make travelling very challenging.”
Simply, taking a trip shouldn’t be done on a whim, and Genesh recommends consulting with a physician before making any definite plans.
TIP 1 Keep it simple “All our travel is broken up into one-week allotments. One of our secrets is to keep things from constantly changing — this will cause someone with dementia to be confused, frustrated and upset. Make bases and make them comfortable.” –Alan Rae
What If I Want Help Planning a Trip?
If planning a trip as a care partner feels overwhelming, consider employing the help of an accessible travel agent. Tarita Davenock is the CEO of Travel For All, a global company she started in 2008. Travel For All arranges trips for clients living around the world who would like to travel. But unlike other travel agencies, Travel For All specializes in accessible travel, meaning the company plans and customizes trips for clients with a range of health challenges, including dementia.
“We find out what exactly our clients’ travel requirements are and what their health challenges are. We investigate to find out exactly what their needs are and then ask where they’d like to go, just like any other travel agent,” explains Davenock.
Davenock adds that the company works with more than 250 suppliers around the world, including hotels, vehicle rental companies and cruise lines, that are known to have accessible offerings that can cater to their clients’ health challenges.
The Travel For All team also understands intimately what’s involved in putting together an accessible vacation. Davenock lives with multiple sclerosis, and hires people with disabilities and health challenges to work for Travel For All.
“We get it. I think it’s easier to speak with someone who completely understands any and all limitations. We don’t limit clients by their challenge,” says Davenock. “You can still do whatever you originally had on your bucket list!”
What If I’d Like To Travel With a Group?
Consider searching for dementia-specific travel packages and tour groups, such as those offered by Elite Cruises and Vacations. Kathy Shoaf RN worked as a geriatric and neurology nurse for 20 years before launching Elite Cruises and Vacations, a Chicago-based travel company catering specifically to caregivers and clients with health challenges, including dementia.
Part of its appeal is that cruise ships offer individuals with dementia continuity and familiarity.
“I use a cruise ship because clients don’t have to unpack and pack all the time, which is very much a challenge for people with dementia. We can still see the world, but we’re going to do it from the same bed every night,” says Shoaf.
The company offers group cruises that, on average, last seven days and leave from destinations all over the U.S. and Canada. The company welcomes clients living with all stages of dementia. Whether clients book a group cruise to Alaska or the Caribbean, each trip provides trained medical and support staff, and offers care partner assistance and respite care. There are daily activities, such as Zumba and crafts, as well as the occasional shore excursion.
Since Elite Cruises and Vacations launched 10 years ago, Shoaf has seen numerous repeat clients. And to her, that’s proof that the company is doing its job.
“This is all about giving our clients the perfect moment,” says Shoaf. “I see how our clients with dementia are happy and enjoying their life — and those are memories that will last a lifetime for their caregivers.”
TIP 2 Be flexible “Have an itinerary laid out but build flexibility into your planning, too. By having yourself settled in one spot, you have more options. Don’t try to over-plan or do too much.” –Alan Rae
What If We’re Not Sure About a Long Trip Away?
A shorter trip can still offer a break in routine for both the care partner and the individual with dementia. Booking an overnight stay at a favourite hotel nearby, eating at restaurants and exploring the surrounding neighbourhood can still feel like a holiday. According to Genesh of the Alzheimer Society of Calgary, staycations can offer care partners an idea of how their loved one might react to changes in their routine, in an environment where the outing can easily be ended if symptoms worsen.
Short day trips also offer new experiences and a chance to engage with new surroundings. In 2018, the Kerby Centre in Calgary, a not-for-profit organization dedicated to supporting and enhancing the lives of older adults including programs specific to those living with dementia, planned a variety of short excursions for clients. There were trips to Jubilations Dinner Theatre in Calgary, to the Museum of the Highwood in High River, to the Spruce Meadows International Christmas Market, and, its most popular, to the Arrowwood Hutterite Colony near Blackie. Each trip accommodates an average of 25 guests, and the excursions often sell out months in advance.
According to John Vaillancourt, the Kerby Centre’s senior manager of knowledge and recreation, it’s the experience, not the destination, that’s most important to the guests.
“When you talk to the people that go on these trips, they will tell you they enjoy the different places we go,” says Vaillancourt. “But the part they really enjoy is socializing with other people and just having a good time.”
TIP 3 Speak up “We do group hiking trips, and I make a point of saying, ‘Joan has dementia, so some days she might seem distant.’ It’s amazing because it’s a conversation starter and I also find the group is more likely to talk with Joan and engage with her.” –Alan Rae
Savour the Moment
Alan Rae isn’t sure how much longer he and his wife will be able to travel internationally. But even as Connor’s dementia progresses, their travelling will continue. Rae knows their trips will need to be altered in the future: he suspects they’ll stick closer to home, with road trips to Palm Desert and Florida, using a trailer so the familiarity travels with them.
But for Rae, this change doesn’t matter. For him, travelling is about spending quality time with his wife, doing an activity that they’ve both loved for decades.
“Wherever you’re travelling, take the time to savour the small things. Enjoy that smile from the individual, stop to take a picture, look at the fun side of travel. Recognize what’s important, because things are going to change. Every little moment is precious,” says Rae.
“Regardless of whether you do international trips or decide to go out to the farm for the day, travel is about taking the time to savour the moment.” [ ]