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Within the United States alone, over 5.8 million people are living with dementia. That is 5.8 million people with hopes, dreams, passions, and hobbies – many of whom love to travel.
So naturally, many of these people will want (or need) to travel in a given year. But how do they navigate this while living with dementia?
And as caregivers, how can we enable our loved ones with dementia to travel… without risking their safety?
My personal history with travel and dementia
I discovered the challenges and nuances of travel and dementia back in 2017. I was graduating from my Masters degree in Occupational Therapy in England, and my grandmother wanted nothing more than to come to my graduation ceremony. I wanted nothing more than for her to be there.
At the time, my grandmother had the early stages of Alzheimer’s Disease – but as a life-long traveler she wasn’t about to let a little thing like that stop her from a cross continental journey at the age of 84.
During the trip we, of course, learned that even in the early stages, Alzheimer’s Disease is not a little detail, but something that should be factored into every aspect of trip planning.
Although challenging, that trip was incredibly meaningful for both of us. Perhaps inspired by that trip, I went on to work in a memory care unit after graduation, where I learned even more about the complexity of dementia.
Based on my professional and personal experience I cannot tell you whether travel with dementia is the “right” or “wrong” thing to do. However, I can offer you some advice and general principles to keep in mind when deciding if and how your loved one with dementia should travel.
What is dementia?
Dementia is an umbrella term. It refers to a variety of conditions that present short term memory loss, visual perceptual difficulties, movement disorders, disorientation, language processing issues, and more.
If you aren’t a caregiver for someone with dementia, chances are you know someone who is.
It is important to note that Alzheimer’s disease and other dementias are not a normal result of aging. They are serious neurodegenerative diseases that present uniquely.
Dementia can significantly impact a person’s ability to complete activities of daily living from paying bills to toileting – much less participate in previously meaningful yet complex occupations like traveling.
Why travel with dementia?
If the symptoms of dementia make traveling so difficult, why should we support our loved ones with dementia to travel?
The Dementia Action Alliance states on behalf of people with dementia: “I have holistic, emotional, social, physical, and spiritual dimensions just as you do. Therefore, help me stay connected to what is important to me in my family, home, community, and spirit.”
As caregivers of those with dementia, it is our duty to support our loved one to remain connected – and travel is an obvious way to do that.
Personally, I have experienced the benefits of travel to connect me with the world and deepen my human experience.
I firmly believe these benefits should not be withheld from someone due to a cognitive impairment like dementia.
Whether that travel is a passion to see the world, a necessity to attend family events, or even the process of moving closer to family, travel is important and should not be disregarded in dementia care.
How to know if your loved one with dementia is safe to travel
So, we know that travel is incredibly enriching and inspiring, and people with dementia are still complex human beings who deserve that experience. But is travel appropriate for everyone with dementia?
The answer, sadly, is no. As caregivers, we should not discount a loved one’s ability to travel simply because they have dementia. Many people with dementia can still travel safely with the right supports. However, due to the disease process, this is unfortunately not true for everyone.
The changing environments of travel are not only disorienting, but potentially dangerous for people with dementia. Above all, safety should be your first priority when determining appropriateness to travel.
The decision to travel with dementia is unique, but here are some important factors to consider:
At what stage of dementia is your loved one? Going off the simplest three-stage model of dementia, here are some things to keep in mind:
- Early stage: Individuals in early stage dementia may be completely mobile and independent, but experiencing some memory and judgment lapses. Travel may be an appropriate choice with the right adaptations such as a companion or even just Google Maps for familiar routes.
- Middle stage: It is most difficult to determine appropriateness of travel in moderate or middle stage dementia. At this point you should consult with your loved one’s physician for advice. Take into consideration your loved one’s problem-solving abilities, and orientation to person, time, and place when making a decision.
- Late stage: Travel is not appropriate for individuals with severe dementia. These individuals are completely dependent in all activities of daily living, are most likely immobile and receiving skilled nursing care. If they were a travel lover, show them photos of previous trips. Engage them in sensory experiences like music, videos, scents, or foods to stimulate memories of travels past.
How much support can be provided? The more support you can provide, the more likely travel will be a safe option. If you cannot personally accompany your loved one, you can look into travel companion or care staff services.
Did your loved one travel in their youth? Alzheimer’s disease and other types of dementia affect short term memory first. However, in the early and middle stages long term memory is still intact.
For instance, your loved one may not remember their flight number or time, but a frequent traveler could still remember how to navigate a familiar airport, or the process of boarding a plane.
Previous travel experience does not mean it’s safe for this person to travel, but it might indicate that they will have less disorientation and anxiety with the right support in place.
How does your loved one respond to new environments? New environments can be incredibly disorienting for people with dementia, who may have difficulty interpreting and reacting to unfamiliar stimuli.
Your loved one may appear perfectly functional at home, but get lost when driving to a new location or walking through the grocery store.
Before a major trip, try introducing your loved one to new environments locally and monitor how they adjust and react in these scenarios.
Air travel with dementia
There are many things to keep in mind regarding air travel with dementia. This is one of the most challenging types of travel for people with dementia, and the type that most caregivers have concerns about.
I know that personally I find flying stressful – from checking in, getting to the airport on time, navigating security and more. So just imagine how much more confusing it is for people with dementia.
Luckily, there are researchers in the UK currently studying the air travel experience for people with dementia.
Hopefully, this research will lead to a safer experience with more awareness.
Here are some tips from the Dementia-Friendly Flying project’s preliminary results to help reduce confusion and improve safety:
- Book flight during a “good” time for your loved one. Many people with dementia experience “sundowner syndrome” meaning morning flights are best.
- Notify the airline of your loved one’s dementia. Chances are they can put safeguards in place to monitor your loved one’s experience.
- Organize a travel companion. Whether this means you flying with your loved one, or a care staff or travel companion service. If it’s appropriate for your loved one to fly independently, you might still arrange a meet-and-greet service, as well as for airline staff to accompany them through security and to the gate.
- Reduce luggage. Less luggage means less confusion and easier mobility through the airport.
- Pack medication and extra change of clothes in a carry on. If your loved one is incontinent, be sure to also pack adult incontinence briefs.
- Arrange a lanyard. Some airports such as Heathrow have started Dementia-Friendly Flying programs and will issue your loved one a dementia-specific lanyard or bracelet. This is a discreet way to notify airport staff of your loved one’s needs.
- Request mobility assistance 48 hours ahead of time. Whether your loved one needs a wheelchair or motor scooter or not, this may make navigating the airport easier.
- Dress for security. Have your loved one wear clothes without metal, buttons, or belts. Wear single layers and slip off shoes and remove all jewelry prior to security.
- If you are accompanying your loved one, stay together at all times
- Locate caregiver restrooms and use accordingly.
- Have your loved one wear a document holder with passport and flight information, as well as emergency contacts in case of separation.
- Go through security check points behind your loved one, as you will not be able to return through security to help them once you are through.
- Utilize an airport lounge or quiet room while waiting for your flight.
- Have your loved one wear sunglasses and headphones. This can reduce sensory overload and make the experience less confusing.
- Give yourself plenty of time so you are not rushing through check in and security.
- Bring favorite snacks, familiar games, and items to fidget with to act as distractions from stressful environment.
Car travel with dementia
Many of the same principles from air travel apply to car travel with dementia. The benefit of car travel, however, is a confined environment and the flexibility to travel at your own pace and schedule.
When traveling by car with a loved one with dementia, be sure to pack all medication, and have easy access to changes of clothes and incontinence briefs.
You may also want to print a simple itinerary and place it in an obvious place for your loved one to consult, if they are able.
It is important to repeatedly orient your loved one to their location, but try not to overload them with information. Similarly to flying, you may also pack sunglasses and noise canceling headphones to reduce sensory overload.
Plan frequent rest breaks and give yourself plenty of time to reach your destination.
Packing familiar items like a well-loved sweater, their bedroom pillow, and family photo albums or framed pictures can also help during travel. These will act as familiar supports in the stress of a changing environment.
The 5 P’s of travel with dementia
Based on my own personal and professional experience, I developed a model I call the “5 P’s of travel with dementia.” This is my own way of remembering the principles that will keep me and my loved one happy and safe.
Patience: Above all, take a deep breath and practice patience. Your loved one may ask you the same question every five minutes, but this is because they are in an unfamiliar environment with a neurodegenerative disease!
Answer their questions calmly and patiently, because to them this is the first time they’ve asked the question or experienced this situation.
Planning: Plan ahead for the most stress-free experience. From requesting airport assistance, giving yourself extra time, or booking a meet and greet service, you’ll be glad you planned.
Packing: Pack a travel survival kit that is easy to access – this should include medications, identification, travel documents, incontinence briefs, a change of clothes, sunglasses, noise cancelling headphones, and familiar games and items to soothe your loved one.
Perseverance: Persevere in the face of adversity! Your loved one may not want to cooperate and this can be frustrating, especially in the middle of an airport or immigration line.
Consider the underlying reasons. Maybe they are not cooperating because of how you approached them, as saying “no” is often easier for someone with dementia than asking to clarify a situation.
Take a deep breath and re-approach the situation from a new angle – physical or metaphorical.
Personhood: Your loved one is still a person and this fact should be held sacred. Their disease may change their personality, memories, and more, but underneath it all they are still the person you love.
Always remember this and it will make the challenging aspects of travel easier to handle.
Final notes of supporting your loved one with dementia during travel
Whether you are attempting an international trip with your loved one, or simply an hour road trip to a family gathering, good luck. I know first-hand that travel can be stressful for both the person with dementia and the caregiver.
Try to keep focused on the ultimate goal, though: an enriching experience for both you and your loved one. Beyond the inevitable stress I promise that there is joy – and seeing those moments of clarity and joy in your loved one are well worth it.