“We’ve both had ‘that’ trip — the last trip that you take when you decide we’re not traveling ever again with our care receiver. Or, as we like to say, it’s the trip after the last trip you should have taken!”
We are Sue Ryan and Nancy Treaster. As caregivers for our loved ones with Alzheimer’s and other types of dementia, we’ve learned travel decisions require careful consideration. Through our experiences, and what we’ve learned from support groups and others on their journeys, we’ve developed four important tips to help you decide whether you and your care receiver should stay home or go on what could be ‘that’ trip.
When considering travel with someone living with dementia, we need to look through their lens, not ours. Early in their journey, everything may be fine with minimal issues. However, if we travel past the point where they should go, things can go sideways quickly. It’s reasonable that in the beginning of our journeys, we don’t know what we don’t know. That’s why it’s crucial to be as intentional as possible about preparation and thinking through various scenarios.
Here are four tips to help you navigate travel decisions with your care receiver.
Tip 1: Pre-test Travel Readiness
The desire to maintain normalcy often leads us to attempt travel before fully understanding how our loved ones might handle it. While daily outings like grocery shopping or doctor visits might still be manageable, extended travel presents entirely different challenges. Think of pre-testing as a dress rehearsal — not just a quick run-through, but a thorough preview of what your loved one might experience during actual travel.
This isn’t about those quick trips to familiar places. Travel often involves hours in one or more modes of transportation, unfamiliar environments, different routines, and sometimes crowds or noise levels we don’t experience in our daily lives. By simulating these conditions beforehand, we identify potential issues before we’re committed to a long journey far from home.
The key is to create situations that genuinely mirror what your loved one will experience during travel, so you spot red flags while you’re still in familiar territory. We’re guiding you to do something counter to what we all do with loved ones living with a diagnosis of dementia — we’re asking you to test them by taking them way out of that detailed routine you work so hard to keep them in.
Key points:
- Test longer car rides (at least an hour round trip)
- Try interstate driving if that will be part of your journey
- Experience crowds and noise if those will be present
- Test unfamiliar environments
- Pay attention to any existing signs of travel difficulty.
Nancy’s Experience:
I had already started to notice changes and didn’t give them as much credence as I should have. I was having a little bit of trouble when going to the grocery store where I was still taking him with me, and then having a little bit of trouble getting him back in the car to go home, so I had some previews that I should have paid more attention to before I took us on a two-hour trip away from home.
My husband was fine when we took our last trip — the trip down to my sister’s home. The drive down was fine and we’d visited many times. The nighttime sleeping situation was different than at home where we were sleeping in a bedroom that had a connected bathroom and I was also using a childproof doorknob cover to keep my husband from leaving the bedroom at night so I didn’t have to worry about him wandering.
When we slept at my sister’s house, we slept in a bedroom that didn’t have a bathroom connected to it, so I had to leave the door open for him to get to the bathroom. All night long, he wandered around the house. Because this was a family event, we had a house full of people. All night long he went from room to room to room, rattling the doorknobs. People had to lock their doors because he kept trying to get in. No one slept that night.
He was actually pretty fine during the day because it was a place he was still familiar with. But, when it came time to come home, he was having none of it. He was not going home. He was staying there. Every time the car would slow down, he literally tried to open the door and get out of the car. It was frightening. The first thing I did when I got home is go to the used car lot up the street. I traded my car in for a car with child proof door locks in the back seats.
Sue’s Experience:
We had a very similar situation, although ours wasn’t an optional trip. We live in South Florida and Hurricane Irma was going to come straight up our street, which it did. I said, I’ve got to evacuate my husband Jack — if we have damage, and/or lose power and water, I can’t keep him safe. I packed very quickly. We hadn’t been on the highway for very long when Jack realized we weren’t just going to the grocery store. He began trying to get out of the car. I thought having him in the front seat would be better than the back seat with the child locks because I could keep talking to him to keep him calm and I could give him things to distract him. I was wrong and it was an incredibly challenging trip.
Tip 2: Evaluate All Trip Components
Once you’ve completed your pre-testing, it’s time for a deeper evaluation of the actual trip components. This goes beyond just considering the journey itself — it’s about understanding every aspect of what your loved one will experience, from sleeping arrangements to daily activities. Think of it as creating a minute-by-minute movie in your mind of how the entire trip will unfold.
Many of us have learned the hard way that what seems like a minor detail at home can become a major challenge away from familiar surroundings. A different bathroom layout, unfamiliar bedding, or the absence of usual comfort items can turn what should be rest time into a night of anxiety for both caregiver and care receiver. This is just one example. Review this for all components of your travel. This evaluation stage is your chance to identify and address these potential challenges before they become real problems.
Key points:
- Assess sleeping arrangements and bathroom accessibility
- Consider the need for quiet space
- Evaluate support options at the destination
- Think about familiarity with locations
- Listen to your inner voice about the decision — is this the wisest choice?
Nancy’s Experience:
When we went to my sister’s house, been there a million times, the nighttime sleeping situation, we were sleeping in a bedroom that had an en suite bathroom and I was using a childproof doorknob cover to keep my husband from leaving the bedroom at night so I didn’t have to worry about him wandering. When we slept at my sister’s house, we slept in a bedroom that didn’t have a bathroom connected to it. So had to leave the door open for him to get to the bathroom. All night long, he wandered around the house. We had a house full of people, because this was a family event. And he went from room to room to room, rattling the doorknobs. People had to lock their doors because he kept trying to get in. All night long, no one slept.
Sue’s Experience:
We ended up having to stay in a hotel overnight and the child proof door knob covers wouldn’t have worked in ours. However, had I taken a door jam, which is just as good at keeping a door shut as it is at keeping the door open, I wouldn’t have had to sleep at the base of the door of the hotel room overnight so that he couldn’t get out.
Tip 3: Plan Comprehensively
After deciding to travel, planning becomes your most powerful tool. This isn’t just about packing bags and making reservations — it’s about creating the framework that helps maintain as much normalcy as possible while preparing for unexpected challenges. Think of it as building a safety net that allows you to maintain familiar routines even in unfamiliar places.
The goal is to recreate the comfort and familiarity of home wherever you go, while having contingency plans ready for when things don’t go as expected. This dual approach — maintaining routine while preparing for disruption — can make the difference between a manageable trip and one that becomes overwhelming for both you and your care receiver.
Key points:
- Minimize advance information to avoid overwhelming your care receiver.
- Pack comfort items:
- Fidget blankets
- Familiar snacks
- Favorite music and headphones
- Photo books
- Familiar entertainment (DVDs, etc.)
3. Plan around normal routines:
- Meal times
- Sleep schedule
- Best times of day for different amounts of activity
4. Prepare for emergencies:
- Take IDs and insurance cards
- Bring extra medications
- Pack legal documents
- Consider anti-anxiety medication options
- Share detailed itinerary with family members
- Have your emergency contact information easy to find on your care receiver and in case something happens to you.
Nancy’s Experience:
My husband would watch MASH every afternoon during his quiet time. We watched the same reruns over and over again. So before we traveled on one of our trips, I bought a bunch of MASH DVDs and took them to the hotel we were staying in and every afternoon I would put the MASH DVDs on so that we could get into his normal afternoon routine.
Sue’s Experience:
When we evacuated for the hurricane, we returned to Atlanta where we had lived for many years. We stayed at the home of where his son, daughter-in-law, and granddaughters lived — a place we had visited many times. Jack was terribly disrupted. He didn’t recognize the home, or our granddaughters. It was very challenging. I knew one place that always gave him great peace was being at church and I started taking him to church to the first mass in the morning and we would sit in a small chapel afterward and just have the calm. I would take him to the noon mass, to the afternoon mass, periodically we went in the evening. I was able to continue to get him anchored back to something that was helpful.
Tip 4: Prepare Others
While we focus much of our preparation on our care receivers, preparing others who will be part of the travel experience is equally important. Family members and friends who haven’t seen your loved one recently may not understand how their condition has changed or how to interact effectively. This preparation isn’t just about preventing awkward moments — it’s about creating an environment of understanding and support that benefits everyone involved.
Others may be experiencing their own emotional journey as they witness changes in your loved one. By helping them understand what to expect and how to interact, you’re not just making things easier for your care receiver — you’re also giving others the tools they need to maintain meaningful connections despite the challenges of dementia.
Key points:
- Explain current abilities and challenges
- Provide conversation guidance
- Demonstrate proper approach techniques
- Give permission for others to opt out if they’re not comfortable
- Show grace toward those processing their own emotions
Sue’s Experience:
There are some people who have memories of our loved one before they received their diagnosis and this breaks their heart. They’re not comfortable being around our loved one. If you can find in yourself the grace to say it’s okay, please consider this. I’ve done this multiple times to let others know it’s okay if they’re not okay, that we love them and will always love them, sharing that it’s reasonable this is challenging for them.
Final Thoughts
Whether to stay home or travel is a difficult decision when caring for someone living with dementia. Sometimes we learn the hard way, and that’s okay. Give yourself grace — we don’t know what we don’t know. With careful preparation and honest evaluation, we can make better decisions for both ourselves and our care receivers.
Key takeaways:
- Pre-test thoroughly before committing to travel
- Evaluate all aspects of the journey and destination
- Plan for both routine maintenance and emergencies
- Prepare others for successful interactions
- Listen to your instincts about whether to go
- Consider alternative ways to connect if staying home is best
If you have tips you think others would benefit from, please share them on our Facebook page or Instagram page.
We’re all on this journey together.
Additional Resources Mentioned
These resources contain affiliate links so we may receive a small commission for purchases made at no additional cost to you.
- Fidget blanket here
- Child proof door knob cover or double deadbolt locks for external doors
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