Planning for the holidays with someone living in dementia? The University of Wisconsin School of Medicine's Dr. Alexis Eastman shares best practices for navigating dementia in holiday travel and family gatherings.
The holidays can be hectic time, even for someone in perfect health. For those living with Alzheimer’s or another form of dementia, their care partners and loved ones, the holiday season — with its possible travel, company, and commotion — can pose all kinds of extra challenges.
People living with dementia may need a little extra support in navigating the experience of so many family members gathering, digressions from familiar routines, and time in new locations. And for caregivers and family members, balancing hosting, celebrations, and providing care poses a lot to think about.
But caregiving consultants and coaches, including Dr. Alexis Eastman, a clinical associate professor at the University of Wisconsin School of Medicine, are here to offer a little reassurance: There are expert-vetted ways to make this festive time better, easier, and calmer for people living with cognitive decline and their loved ones. If you choose to travel, there are key strategies that caregivers can take in planning all of the trips this season may require.
Eastman — the director of Clinical Operations for the university’s geriatrics clinics and the director of the Chronic & Preventive Care course at the UW School of Medicine and Public Health — is used to coaching others on planning and preparing, both logistically and emotionally, for the holiday season. “Everything’s going to take more time and it’s going to require more adjustment,” Eastman told Being Patient’s EIC Deborah Kan in a 2023 Live Talk. Check out a video or a transcript of the conversation below for Eastman’s wisdom on how caregivers and people with dementia can make sure they’re as prepared as possible for the holiday season — so they can focus on the joy, celebration, and peace the holiday season can bring.
Being Patient: Let’s talk about preparing for the holidays. I can speak from my personal experience with my mom, who is now in a later stage of Alzheimer’s. Honestly, I’m nervous for her. Because I know big crowds make her anxious, but when we get our family together, we’re 20 people or so. So, how can I prepare better for the Thanksgiving dinner that’s coming?
Alexis Eastman: It’s a great question. One of the things that happens in Alzheimer’s is that the brain is struggling to just kind of put everything together in some coherent order. It does not tolerate chaos, changes, or just too much information coming at it all at once. You’re absolutely right to say, “Oh, gosh, my mom is going to struggle with this,” because I think that’s very true.
Unfortunately, it requires a lot of advanced planning, right? You have to say, “Okay, how do we, despite the fact that there’s 20 of us, and we all love each other, and we’re just going to be all over the place, keep this as simple and meaningful as possible?”
This is not the year, perhaps, to pull out the brand new recipe spread from the internet that you’re going to try—that’s not this year, right? You’re going to say, “Okay, what are the meaningful dishes we’ve always made? Can somebody else be in charge of some of that so I can focus on Mom?” “Where’s the quiet space in the house that mom can take breaks in? Who’s going to be assigned to be in charge of breaks?” “Who’s going to help monitor mom and help her get to a little room for a timeout? How do we minimize chaos?”
You know, not lots of lights, not lots of cords, not lots of music, right? The people will be sufficient to the best extent possible. Keeping things as simple and sort of straightforward as you can [may be] the best way to keep someone safe, feel comfortable, and enjoy the people they love.
Being Patient: I hate to say this because it’s sad, but I’ve asked myself, “Should we do this without her and maybe do a smaller thing with her?” Because you’re facing a lot of different things here. You’re entertaining, and then Mom’s in the corner and having trouble following the conversation and getting frustrated. She’s also having a hard time speaking and conveying her speech. We’re at a stage now where she’ll often bang on things because she can’t say, “Wait, listen to me,” it becomes a very disruptive cycle. What would you say to people questioning whether these holiday celebrations are a suitable environment for loved ones with Alzheimer’s and dementia?
Eastman: One thing to acknowledge in all of this is that there are no good decisions. There’s only good enough decisions. You have to be forgiving of yourself to say, “It is what it is, and I’m gonna do the best with what I can.” So, if that means for your family, there’s a small ceremony, and the larger one is without her, that’s what works for your family.
For other families, it may be okay. “We’ve got this many teenagers who are coming, and each of them is going to be in a shift to hang out with grandma.” We’re going to put them in a quiet corner with some structured activities, going over old photos, singing songs together, or just asking stories about her life. That’s going to keep her occupied and keep her included and give her that chance to interface with the younger generation. Sometimes, that works for people; sometimes, they don’t have those people to assign.
“One thing to acknowledge in all
of this is that there are no good decisions.
There’s only good enough decisions.”
It’s probably not something you want the five-year-old to do, for example, but the 15-year-old might be a good person. So it’s whatever works in your family. If your mom is not able to enjoy the opportunity of seeing each other, then you shouldn’t force her to.
Being Patient: I love that idea, actually, of having. I mean, I have teenagers and two grown kids in their early 20s, and there are cousins and everything. I love that idea because I feel like, in this later stage of Alzheimer’s, one of my mom’s frustrations is that she wants to interact, but she’s losing words. So, it’s frustrating because she can’t get her words out, but she wants to be present. I love the idea of having her somewhere a little bit quieter where the kids rotate because she loves her grandkids. Even if she doesn’t remember exactly who they are, she knows there’s a connection there, so holding on to those connections, I do believe, is really important.
Eastman: It can be really meaningful for the grandkids. This is their big chance. My family has these photographs, and half the people are long gone, and I have no idea who they are, but Grandma still knows. So, sitting down with her and saying, “Who’s that?” a lot of times, that may or may not come back, and she may make up a story to explain the photograph. That’s also okay because it’s fun.
Being Patient: Tell us what other things come up during the holidays. Just to be clear, we’re obviously talking about people who are maybe in a later stage of dementia. There are still people who have a diagnosis who are independent and very capable. When behavioral decline or symptoms happen, how do you manage that? What other types of things do we need to plan for, specifically?
Eastman: I think the one thing we always have to think about is safety. Because you, as a caregiver, are entertaining as well as organizing, you can’t keep track of all the potential hazards in the house, especially if you’re not at your own house. So, you want to make sure that there are [no] unintended candles, ovens, or fire grates that can be easily moved or left on something that someone could burn themselves on.
You don’t want a lot of tripping hazards. Like the worst thing that can happen on the holidays— someone trips over the lights to something and breaks a hip. That’s a terrible thing that happens. That’s one thing to think about. Not a lot of flashing lights, like blinking lights and bright consoles and singing statues of stuff— that’s not really very good because that engenders more anxiety.
It really is about keeping decor very simple, keeping the space very simple, which saves you a lot of decorating time, frankly. So, that’s one less stress for the caregiver. As we talked about, that [having] the corner, but also a quiet nap place. Because you get really tired when you have to think that hard just to get your brain to work, and that’s exhausting. Your brain uses the vast majority of your calories in a given day, and having a nap space is a great thing to have in a house. Setting that aside is important, too.
Being Patient: We talked a little bit earlier about including other people. Is that the right thing to do? How do you decide if you should include family and friends in the celebration?
Eastman: Potentially. I think one of the pitfalls you run into is that if someone’s from out of town, and they know your person, but they don’t know them very well, or it’s been a long time, the difference in how they’ve changed may be shocking. If you’re going to do that, it can be worth sending an email ahead of time to say, “Hey, so glad you’re coming. You may notice that mom is different than the last time you saw her, and this is what you can expect. She can still engage and enjoy these activities, and we ask you to be mindful, to watch out for this.”
“Your brain uses the vast majority of
your calories in a given day, and having a
nap space is a great thing to
have in a house.”
That kind of preparation can be very valuable. If someone has a loved caregiver that you want to incorporate, they can be a useful helper to both the person hosting and also to your parent, your loved one, [or] your whoever because that’s another familiar face who’s there every day, who knows the ins and outs of how your parent works.
Being Patient: What about travel? We stopped traveling a while ago, and the reason behind that was because we felt like she was getting worse. It was a totally new environment. This is a woman who’s traveled all around the world all her life, and suddenly, it just became impossible. More confusion, you know, no routine, and it just didn’t work anymore. What do you say to people who are saying, “Oh, I really want to go visit with my spouse with dementia to see the kids,” and it’s out of town and familiar? How should people prepare for that type of trip?
Eastman: I mean, think really long and hard about that. If you think about everything that annoys you about travel, magnify that by a hundred, and think about how you may want to proceed. If you still say, “Yes, it’s worth it. We [have] got to do this trip,” then you want to plan well in advance with lots of buffer time.
If you have enough money and are logistically possible, travel one way no stops, no layovers. If you have to have a layover, make sure there’s plenty of time between flights [and] no racing between terminals. Get a wheelchair service. Make it easy, and don’t try to walk through. Make sure that if you’re going through security, tell the airline before you go, and maybe they’ll get you through a little faster. Maybe they’ll help kind of smooth that pathway.
Make sure the person goes through security before you because if you go through first, you can’t turn around and help them if something goes wrong. They have to go through it before you. It’s easier for them to wait on the other side for you and you to wave than for you to be trying to go back through.
Other things like that. Every little tiny detail needs to be planned in advance with the idea that everything’s going to take more time and it’s going to require more adjustment. You’re gonna need to find the quietest spot in the airport to sit in, and maybe it’s the meditation room, or the chapel, or the support pet area, which some airports have now. You’re gonna want to make sure that everyone along the way discreetly knows that you’re traveling somewhat with someone who may need some extra time and attention.
Being Patient: What about the airlines? There are so many cases of dementia today. Is there any protocol in place to get assistance with dementia?
Eastman: As far as I know, I don’t. There may be some airlines that do a little bit of training for their staff, I think one of the things we’ve seen is that, unfortunately, airline staff have really had to struggle with disruptive behavior from people without dementia over the past couple of years, and that has been a focus because they have to focus on their own safety.
“Every little tiny detail needs to be planned
in advance, with the idea that everything’s
going to take more time and it’s going to
require more adjustment.”
While they’re all very caring and kind individuals, they probably are not particularly familiar unless [they’ve experienced it] in their own life, which is also very common. Many of us have a parent with dementia.
Being Patient: What about the impact of jet lag? Is there an optimal time to travel and arrive at your destination? I know my mom’s sleep has gotten really good, but it used to be terrible. So, messing with her sleep patterns would be really scary to me because I think it would make her symptoms worse.
Eastman: Yeah, it’s absolutely true. We don’t have any good data on what the already abnormal circadian rhythm of someone with dementia does if you take them through several time zones, but we can only imagine that it is not a good thing. We don’t know if melatonin would help or not help.
Usually, when someone’s traveling, I say give yourself a couple of buffer days. On an off day, go three, four days before anyone expects you to be there to give whoever time to catch up on their sleep, if you can, or if it’s all gonna go to heck and back, then in advance before you end up at Christmas dinner or something like that.
Being Patient: Would it be bold to say if you don’t have to travel, just don’t do it? I mean, it just feels like I just felt like for my mom, it just wasn’t working anymore. You know, why do it?
Eastman: It has to be a really important travel. You always have to ask yourself, “Who am I doing this for?” Because your parent [or] your person, they are not necessarily going to remember the event. They are going to remember the time together and the emotion of that moment. So, if the emotion is chaos and stress and confusion, that’s what’s going to linger.
“They are going to remember the time
together and the emotion of that moment.”
If the emotion is these are my people, this is my space, “I’m enjoying myself.” That’s what’s going to linger. So, you really have to weigh “Is this the bucket list trip that mom and I always talked about, and by golly, we’re going to do it,” Or is it, “You know what, this is a holiday, and people can come to us, or we can put them on the large screen TV, cast them in, and have a meaningful moment.”
Being Patient: I find it often has to do with the spouse or care partner, right? They want everything to be the same. “Of course, we’re gonna go to Thanksgiving, and of course, we’re going to do this right,” and it’s not really about the person with dementia. I understand that, too. It would be sad to be at home alone and not celebrate these holidays. But what you said is true. They’re not going to remember the occasion, which is sad. They may feel it and feel happy for the moment, but they’re not going to remember it.
Eastman: There’s really interesting data out there that if you can make someone with dementia, moderate to severe dementia, feel good, that emotion will linger for up to 24 hours later, even if they don’t remember exactly what happened. In my practice, that leads to me telling a lot of corny jokes in the clinic, right? Because then they’re excited to come to the doctor, and that’s cool.
But in life, that means you should really focus on what that meaningful event is. But I do feel for spouses because if you think about it, every time you make a decision like that, it is a moment of grief. It’s a moment in which that person is drifting further away from you. You have to grieve the loss of the relationship that you’ve always had. That added to the meaning and impact of the holidays for a lot of people is really challenging, and it’s very difficult.
Katy Koop is a writer and theater artist in Raleigh, NC.