With summer in full swing and the holiday season only a few months away, taking time to travel or planning a future getaway may be top of mind for many individuals and their families. But if one family member is living with dementia, such as Alzheimer’s disease or Lewy body dementia, their loved ones may be wondering if traveling is a realistic option.
The good news is that it is very doable to take a trip with someone who has dementia, while ensuring their safety, comfort, and enjoyment; it just requires a little more preparation and setting realistic expectations for everyone involved.
Level-setting from the Get-go
Traveling can be an important part of family and group activities for some, and when a family member planning to go has dementia, it can be an overwhelming idea for everyone involved. Alison Lynn, MSW, LCSW, director of social work of the Penn Memory Center at Penn Medicine, shared how often she and her team are asked about the option for traveling.
“It is a very common question, and it is also very possible to do. I like to set realistic expectations with the caregiver and/or family members beforehand to make sure they are as prepared as possible,” Lynn said.
She notes that any type of disruption to that individual’s daily routine and environment will likely cause some disorientation and that is normal. It may even seem like the symptoms of the disease have progressed, but that is all very common and usually directly associated with the change in routine.
Dementia-friendly Travel Tips
There are some tips that caregivers and family members can do to ease disorientation and challenges that may arise during the trip. The first thing to consider is a trial run trip that is close to home to see how the individual does, if the caregiver and family members are worried or concerned about a faraway trip. Doing this can be a good test to see how and what will potentially be stressful for someone with dementia and lead to more disorientation.
“For example, if a caregiver is thinking of taking that individual abroad, I might suggest first trying to travel domestically to see how the person with dementia does,” Lynn said.
Once a location has been selected, the caregiver and/or family members should look at the easiest and best mode of transportation. Lynn recommends selecting the transportation option which would be most comfortable to the individual (for example, with the fewest stops or layovers on a flight) and that will cause the least amount of anxiety. Lynn also notes that if flying, calling the airline ahead of time to know that someone you are with has a disability can be helpful to expedite security check lines and find out any other helpful tools that the airline can provide.
Additionally, if staying at a hotel, a caregiver can let staff members know of the situation. Many individuals with dementia could potentially wander around out of confusion when looking for a bathroom, bedroom, or another area in the unfamiliar space. Having a plan if that event occurs by knowing who to contact can be extremely helpful. The travel destination should also be in an easily accessible place for emergency health services.
“I always tell the caregiver and/or families to have an emergency plan in place. You hope they never have to use it but it is absolutely a necessary step for traveling,” Lynn said.
It is also important to make sure the individual with dementia always has identification on them that cannot be taken off, like an identification band such as an Alzheimer’s safe return bracelet or a medical bracelet. Things like a wallet or phone would not be sufficient because they can be left behind or stolen.
Lastly, make sure not to over-schedule the trip so there can be a lot of down time for not only the person with dementia to relax and acclimate, but for the caregiver, too. Lynn also suggests that if the trip is just the caregiver and individual, that the caregiver bring a support person or two so they can have a break and a backup person if something happens.
Finally, a note on packing. Sometimes people with dementia become anxious about packing for a trip. This could be related to difficulty with making decisions, or because the task of packing for an upcoming trip could feel abstract. If there’s an observed increase in anxiety or stress when packing, Lynn recommends packing for the person when they are asleep or not in the room.
“You know the weather where you’re going and generally what the person would like to take, so you can ease some stress by relieving them of having to make decisions or planning ahead, which can be difficult for a person living with dementia,” Lynn said.
Things Don’t Always Go According to Plan
Even the best plans can sometimes end up not working out, whether the individual with dementia experiences sleep issues, sun downing (a state of confusion occurring in the late afternoon and lasting into the night), disorientation with the new environment, or ends up wandering around. The most important thing to do is to remain calm and do your best to be a calming presence for them in the moment.
David A. Wolk, MD, co-director of the Penn Memory Center and a professor of Neurology in the Perelman School of Medicine at the University of Pennsylvania, shared the importance of providing comfort and trying to reorient or redirect if the person with dementia becomes confused or disoriented. According to Wolk, many individuals with dementia will mirror the emotions of the caregiver and/or family member, so if they remain calm, the disoriented individual will most likely stay calm too.
Wolk also suggests that if the individual has a tendency towards anxiety and agitation, it might be beneficial to discuss medicinal options with your physician to help.
“Most families do remarkably well on these trips, as they tend to provide respite, engagement, and fun for both care partners and the individual with dementia,” Wolk said.
Enjoy the Quality Time
While travel and the preparation that comes with it may not be ideal and come with challenges, in the end, trips can create happy moments for everyone involved, including an individual with dementia. There is no harm in taking them safely out of their usual environment to be a part of family experiences.
“Enjoy the small moments — like talking, joking, and sharing meals,” Wolk said. “These moments are usually the highlights of a trip. These are also the moments that can be easier on those with dementia.”
If you’re looking for more information about evaluation, diagnosis, treatment, and information about symptoms of progressive memory loss, and accompanying changes in thinking, communication, and personality, visit the Penn Memory Center.