Traveling with Dementia: Asking the Right Questions Before You Go

A Geriatrician's Guide to Traveling with Dementia

and Making Meaningful Journeys Possible

"Doc, do you think I should take my mom on a trip? I'm worried about her dementia." This question comes up often in my practice, and families facing this decision need to start with the right framework.

Recently, a patient's daughter called me about planning a family reunion in another state. Her mother had mild dementia, and the family wanted her there for what might be their last big gathering. "We don't know if we should do this," she told me. "What if something goes wrong? But what if we don't go and we regret it forever?"

That conversation captures the heart of traveling with dementia: it's not just about logistics and safety—it's about balancing risk with the profound human need for connection and meaningful experiences while we still can.

Starting With the Right Question

When considering travel for someone living with dementia, the first question isn't "Can we?" but "Should we?"

There should be a clear, strong reason to travel. Is it one more chance to be around family? An opportunity to share meaningful time together while they can still participate? Fulfilling a promise made years ago? Or is it something that was merely "suggested" without deep consideration?

I often see families planning bucket list trips for someone with dementia, only to report afterward: "It was on her bucket list, so we decided to give it a try. It turns out it was hard, and she didn't enjoy it as much as we had hoped. I don't think she remembers it much."

Here's something that might surprise you: the things that were on someone's bucket list before dementia may not be as enjoyable as anticipated now. The disease changes not just memory, but also what brings comfort and joy.

When Travel Makes Sense

Traveling with someone who has dementia requires extra effort and planning, but when there's a strong reason and the right support, it can create profound moments of connection and joy. Travel can provide mental stimulation through new sights and experiences, often resulting in more physical activity than staying home.

Seeing someone with dementia in a new environment reminds caregivers of who the person still is, not just someone significantly impaired by disease. These moments can be precious and memorable for everyone involved.

The key questions become:

• Is there a strong reason to travel?

• Are there caregivers who are willing and able to manage the unique challenges?

• What are the realistic risks given their current abilities?

• Will we be glad we did it?

If the answer to that final question is likely yes, then travel should definitely be considered.

Understanding Risk Levels

Dementia creates different levels of travel risk, and understanding these levels helps determine whether a journey is manageable or potentially dangerous.

• Lower risk situations involve mild-stage dementia with stable, well-controlled behaviors. The person can understand and respond appropriately to conversation, and unfamiliar environments don't typically cause significant problems. There's minimal fall risk, good mobility, and no wandering or safety concerns.

• Moderate risk includes middle-stage dementia with some behavioral symptoms that are generally controlled. The person can understand and follow basic directions with prompting, though they may experience occasional confusion in new environments. These situations require skilled caregivers and travel to familiar, planned destinations while avoiding long or complex journeys.

• Higher risk involves moderate to advanced dementia or problematic behaviors. The person cannot understand or follow simple directions consistently and has significant mobility impairment or fall risk. Travel at this level should only occur if absolutely necessary and requires highly skilled caregivers.

Understanding your situation realistically helps make informed decisions about whether travel enhances life or creates unnecessary stress and danger.

Building Your Support Team

Here's what many people don't realize: you should try not to travel alone with someone who has dementia. These trips require backup support and careful planning for success.

Make sure other family members or caregivers commit to helping during the trip. Work together on expectations and discuss tasks and responsibilities. Clear role definition decreases stress, makes for good teamwork, and prevents last-minute scrambling.

But here's the critical piece that families often overlook: it's essential that the primary caregiver has something to look forward to each day. It could be a special activity or just a break and time alone, but plan for it every day. This often requires help from another person.

Having this reward can make the difference between a successful trip and caregiver burnout. When caregivers become overwhelmed, the person with dementia often picks up on that stress, making everything more difficult and less enjoyable for everyone.

Set realistic and achievable goals with your support team's input. Success should involve achieving the most important travel goals without overwhelming stress. This often means emphasizing the familiar over the new, the simple over the complicated, and the comfortable over the exciting.

Essential Preparation

Proper preparation transforms good travel plans into successful journeys. Start at least one month ahead to allow time for essential safety measures and medical coordination.

Safety First

Medical ID bracelets or pendants are strongly recommended, including current information: name, emergency contact, and "Memory Impaired." GPS tracking provides peace of mind due to wandering risks. Some devices can be worn in shoes or sewn into clothing rather than obvious wearables that might be removed.

Medical Coordination

Schedule time with healthcare providers to discuss travel plans. Some airlines require physicians to complete the MEDIF (Medical Information Form) for passengers with cognitive impairments. Request current medical summaries, including diagnosis, medications, and contact information.

Review medicines carefully, including timing adjustments for travel. Ensure adequate supplies plus extras for potential delays. Plan for at least a week's extra supply beyond the trip duration.

The "Just in Case" Medication Conversation

Many caregivers ask me for medicines to manage behavior problems while traveling. My answer relieves them: "Yes, just in case."

Travel can magnify restlessness, agitation, and sleeplessness, especially on flights and in crowded places. Having a plan, including a "backup" medicine, can prevent a stressful moment from turning into a crisis.

Key Principles:

• Use only medicines that have worked before. No first-time trials on the road.

• Treat travel as a special circumstance and discuss carefully with the prescribing clinician.

• Know the medicine well: its name, dose range, when to give it, and maximum dose per 24 hours.

• The goal is comfort and safety—not restraint.

Not all physicians agree with this approach, but in travel situations, the caregiver is not in control of the environment. A known, "usually effective" just-in-case option can make a big difference.

Day-to-Day Success

Day-to-day success during travel starts with developing routines that feel comfortable and familiar, even in unfamiliar places.

Begin each day with something that provides comfort: coffee and breakfast, watching television, or maintaining usual routines. Allow more time than usual because unfamiliar environments slow everything down.

Plan one main activity per day rather than trying to pack everything in. Accomplishing one daily goal should be considered success, especially without major incidents. Build rest periods into every day because travel takes extra energy, even when enjoyable.

Watch for fatigue and overstimulation. The person may move more slowly than usual, show decreased interest in activities, or make repeated requests to "go home." When challenges arise, prioritize safety and de-escalation over maintaining schedules.

Don't Forget the Caregiver

Having a good day is not just about the person who has dementia. Caregivers need to be aware of how they're feeling and need to take care of themselves. When caregivers struggle, people with dementia often pick up on that stress. Make sure there's something to look forward to each day, and don't wait until feeling overwhelmed to ask for help.

After the Journey

The trip is over. You did it. How does it feel?

First, get some rest. Travel is extra exhausting when caring for a person with dementia, even if everything goes smoothly; the caregiver is "on alert" every moment.

Travel can bring up complex emotions for caregivers. There might be sadness about how much the disease has changed the person, alongside precious moments of closeness and connection. Sometimes disappointment emerges when reality doesn't match expectations, or guilt when caregivers feel they didn't deliver the perfect experience.

These emotions reflect the deep love caregivers have. Support groups can be particularly helpful for processing these feelings. Other caregivers who've had similar experiences provide understanding and insights that friends without caregiving experience simply can't offer.

Make a small effort to keep memories of the trip alive. Keep souvenirs and print some photos. Even if the person cannot remember the adventure, photos and souvenirs provide evidence of something that was done together and convey that the person is important.

The GOLD Approach: Trial Balloons

Should we? Can we? The last question will be "Were we glad we did it?" In the long run, the answer is very likely to be yes.

Gradual approach—start with trial runs

Organized support team with clear roles

Loving preparation that honors the person's needs

Dignified experiences that create meaningful moments

I'm a strong believer in trial balloons. When the subject of traveling comes up, I regularly recommend a "very easy" trip first. If a very easy trip turns out to be hard, a more challenging trip is likely to be extremely difficult.

The easy trip can be something as simple as taking a ride in a car for several hours or a "staycation" at a hotel near home. You will still need to do all the preparation, like packing clothes and medicines, and experience an unfamiliar sleeping environment.

Even if an easy trip has some rough spots, travel is still possible. Learning what works and what doesn't leads to success.

The Ultimate Question

"Were we glad we did it?"

In my decades as a geriatrician, I've watched countless families wrestle with this question. Some decide the risks are too great and choose to create meaningful moments at home. Others take the journey and discover unexpected joys alongside the challenges.

What I've learned is this: the regret of not trying often weighs heavier than the challenges of attempting. When done thoughtfully, with realistic expectations and proper support, travel can provide profound experiences of connection that transcend memory loss.

The person with dementia may not remember the trip in detail, but they often remember the feeling—the sense of being valued, included, and loved. For caregivers, these journeys become cherished memories of choosing adventure and connection over fear and limitation.

Sometimes the most loving thing we can do is take that journey together while we still can. Keep it simple. Stay flexible. Take care of everyone, including the caregiver. Remember that the goal isn't perfect trips but meaningful connections and experiences that honor the person's continuing humanity and capacity for joy.

Travel with dementia isn't about denying the disease's reality. It's about refusing to let it define every moment or eliminate every possibility. It's about saying yes to life, even when life has become complicated and uncertain.

And when you return home, exhausted but enriched, you'll likely find that the answer to "were we glad we did it?" is a resounding yes.

Warmest Aloha,

Dr. Warren Wong

PS: I say it over and over again: There's no one more important than the caregiver in the daily life of a frail person.