‘Tis the Season: Navigating the Holidays as a Dementia Caregiver

Intro: I’m Dr. Nathaniel Chin, and you’re listening to Dementia Matters, a podcast about Alzheimer’s disease. Dementia Matters is a production of the Wisconsin Alzheimer's Disease Research Center. Our goal is to educate listeners on the latest news in Alzheimer’s disease research and caregiver strategies. Thanks for joining us.

Dr. Nathaniel Chin: Welcome back to Dementia Matters. Today I'm joined by Dr. Alexis Eastman, a geriatrician and senior medical director of ambulatory medical specialties at UW Health in Madison, Wisconsin. As a geriatrician, she provides care for older adults in both the clinic and hospital setting. She is also an associate clinical professor in the Department of Medicine at the University of Wisconsin School of Medicine and Public Health. With the end-of-the-year holiday celebration season upon us, I've asked Dr. Eastman to share some strategies and tips for navigating seasonal gatherings and events as someone with mild cognitive impairment or dementia and as a care partner or loved one of someone with dementia. She previously joined us back in 2018 to share some holiday tips for caregivers, and we'll make sure to link that episode in the show notes for anyone interested in hearing that past conversation. Dr. Eastman, Alexis, welcome back to Dementia Matters.

Dr. Alexis Eastman: Thank you, Nate. It's really good to be back again in the recording studio.

Chin: Before we begin to discuss holiday gatherings for people living with cognitive impairment and their care partners, I think it's important to recognize that not everyone with cognitive impairment tells their family or friends about their condition. I know you see this in your own clinic. The questions that I ask you in this podcast will assume the family and friends already know the diagnosis. However, I would like to hear what you say to patients who are struggling with this decision to share their diagnosis or not. What do you say to them, particularly if the holiday season is coming up?

Eastman: I think we all know that the holidays can be a stressful time for anyone, and it's an added burden if you're concerned about any sort of change in your health, especially your cognition. I also don't think you should feel pressured to share any health information, no matter what the situation, including the holidays. If you are concerned that your cognition—and changes in there—may affect the holidays and how you interact with others, I think it's very reasonable to use general terms. For example, you could say, "I'm having more difficulty these days with how overwhelming the holidays can be, so please forgive me if I'm not quite as on top of things as I was last year." You could actually even use that to delegate tasks and say, "I’m not feeling as on top of things this year. It’s a very stressful holiday season for me, any way you could bring the cookies?" I think that could be really a valuable tool and keep that burden of disclosure off of you until you're at a place in your life and time where you feel comfortable doing so.

Chin: In clinic, what concerns are you hearing from people with dementia, their care partners and their families about large gatherings in general?

Eastman: The most common thing I hear about is the overwhelming nature of a large gathering. People with dementia can really struggle with the chaos of holidays and get disoriented and overstimulated. Dementia causes a great deal of what I like to think of as vulnerability in the brain. A vulnerable brain will go to great lengths to protect itself, and it does that often by becoming very anxious or agitated or even just shutting down. When that happens, people can change in their behavior around others, and that really bothers them if they find out that's happened afterward or if their caregiver has to help with that. That's what people tell me they're most concerned about. They're concerned that they're going to be overwhelmed, their behavior will change because of that and they're going to embarrass themselves or others. Caregivers often express that fear, as well as the fear that they will be overwhelmed in trying to navigate both helping their person and the event—or party, or whatever it is—and themselves. That's, I think, the thing I hear most often.

Chin: Alexis, what you say makes perfect sense, and I'll even admit I feel, as someone not living with dementia, that family gatherings are chaotic and, at times, very overwhelming. Recognizing that, and then trying to imagine having a more vulnerable brain and struggling with orientation at times, or just the ability to control how I'm feeling, what that would be for someone. As you mentioned, for the caregiver too, who's trying to do so many other things. It might be helpful for those family members to recognize that even they feel that way and to really be considerate and compassionate towards their loved one.

Eastman: Yeah, it can be a time where everybody sort of just amplifies each other, so the stress just sort of builds until suddenly there's wrapping paper flying. I think that just acknowledging that and just giving everyone some space and grace is a much better approach to the holidays in general—knowing that not every family can do that.

Chin: I feel like you answered part of my next question, which is: how do you suggest preparing for that large, potentially loud, chaotic gathering as someone with MCI or dementia, as the care partner, or just as someone who's susceptible to that level of chaos?

Eastman: Yeah, I think the big thing is, like many things involving dementia, advanced planning, right? There are a lot of different kinds of chaos. One type of chaos is the number of people. Another kind of chaos is the overwhelming input of the decor, the noise, the lights and the sound. Having quiet spaces mapped out in advance, where you know you can escape to—that's good for all of us regardless of our cognitive status. Setting aside that space and talking to the event planner, if you can, to say, "Hey, where can we go and sit and be calm and quiet?" Knowing that and planning for that is a big part of maintaining yourself during the holidays. Additionally, I think it helps to build a little bit more of a care team into the structure of the holidays. If the diagnosis is known amongst the family or amongst a core group of people, having people assigned to be one-on-one interactors with the person with dementia in that quiet space can help them feel included in meaningful activities for the holidays. But also feeling a little bit separated so it's not quite so overwhelming can be a very powerful, powerful tool.

Chin: Well now, relatedly, lots of people may be traveling or staying overnight to attend these seasonal gatherings and events. Do you have any specific recommendations or different strategies for how to make that easier for someone with dementia and their care partners?

Eastman: Yes, this is near and dear to my heart. My sister-in-law was very ill for a long time, and we would have to take her back and forth to California in her wheelchair with her CPAP and her oxygen and all of these things. Any sort of complex medical care—cognitive or otherwise—makes travel very different. I would say the big thing there is, again, time and advanced planning. It is going to take more time to navigate an airport. Ideally, you don’t have any layovers, right? If you can just travel straight through. Most of us don’t have that kind of money. If you have to have layovers, you want to try and minimize them as much as possible and you want to have long distances in time between the layovers, right? You don’t want this to be a 45-minute turnaround. You want a good hour or two between planes. You want some buffer between anything running late in the airport. Then you want to know your airport. All the airports have maps now, usually on an app. You can look and say, "OK, where is the meditation room? Where is the family room? Where is a quiet space?" We’ve even hidden out in the dog room sometimes at airports because there usually aren’t that many people there. That’s a quiet space to take someone in between flights where you don’t have to deal with the chaos of the airport. I think all of those are tools. If you are driving, you need lots of breaks. Maybe it takes more days than you think. I think the other most important piece is to allow yourself some adjustment time between arriving and going to the party. You need a day or two to get into a new routine, figure out what’s going on, sticking to the routines from home as much as possible, and then going to the event.

Chin: All those are great tips, Alexis. One specific question: do you recommend that families or caregivers call ahead to the airlines to say, "You know, we’ve booked this flight, my loved one has dementia," or is that not really needed anymore?

Eastman: That’s a really good question. I think it is always valuable to call ahead and check. The airport may or may not respond to it depending on the kind of airport, the airplane you’re traveling on, or which service you’re traveling on. However, some airlines are really good about this. Some airlines will say, "Great, we’ll just keep that in mind." They’ll give you extra time. They may just make sure that they’re paying a little bit of extra attention. It never hurts. It’s only going to help.

Chin: This next question is just because technology, and AI, and all these tools are out there. We see this on a pretty regular basis now in commercials and ads. Are there ways that technology can help address any of the concerns we talked about or just make it easier, whether it’s traveling or being at the large gathering?

Eastman: I really do think so. I think there’s probably even more than I know as the middle-aged person I am. The first place I think of is, if it really is going to be too overwhelming to go to whatever event there is, the advent of video calls really is nice. Then, you can have an established time at which you’re going to video visit with the person with dementia and their care team. Maybe have individual people come up to the camera so you get that one-on-one interaction, but they still get to see everyone in the family. You can do gift opening, or dinner, or singing all together as a group, but also live in your quiet space and keep your routines. I think that’s really valuable for people with moderate to severe dementia or people who live in facilities to be part of an activity. I think there are also a lot of other little ways that things can be easier with technology. For example, my phone will make reservations for me. That’s wild! If that’s needed though, that’s a very valuable thing. If I need to look something up very quickly, like what time does something open, I can just ask my phone. These are little but useful things if you’ve got your hands full of something, if you’re just trying to navigate somewhere. Again, the apps that most airports and airline services have that tell you where the flight status is, where the next quiet room or bathroom is in an airport, or where the family restroom is in case you need to help someone with toileting—those are all really powerful things, and I think there’s more coming.

Chin: I think the phone can also serve as your own quiet space as far as providing that sound, that noise that might be soothing and helpful for people. You're right, the phone alone is an incredible piece of technology. The GPS that's on the phone, we can keep tabs on our family members.

Eastman: Yeah, I AirTag a lot of things in life—and people, too!

Chin:What do you say to families that ask, "Can my loved one with dementia have alcohol during the holidays?"

Eastman: Yeah, that’s a particularly relevant one because that’s a time when people are usually sharing an alcoholic beverage and enjoying each other. It’s still best avoided, if at all possible. What I have enjoyed seeing over the last five years is the explosion of non-alcoholic beverages that look and taste pretty good. Therefore you can sort of fit right in with the culture of the people having the drink, and you can still have a cocktail, a mocktail, a glass of wine, a glass of beer and they will be non-alcoholic. In fact, you could make an argument that people at any level of cognition should be doing that more at their parties than they are.

Chin: Do you have any other specific holiday safety tips that you tell families who are actually hosting the gathering, as well as how people can help the care partner of someone living with dementia?

Eastman: I think it's really important to focus on simple gatherings with the core traditions and not decide that this is the year that you are going to copy Martha Stewart's Christmas extravaganza, for example, or the world's biggest Hanukkah bash. I feel like this would be a time to say, okay, what are the recipes that are core to our family? What are the types of activities that are core? What are the pieces of decoration that are core? You want to avoid too much bling, too much light, too much chaos, too much noise, and really keep it as simple as possible. I think, as a caregiver, it's really good to try and delegate to make it meaningful. You can use that. You don't just say, "I need help because it's so stressful." You can say, "Hey, these are these core dishes. Wouldn't it be great if everybody in the family brought one of them so that everybody has input to our collective event?" I think those are valuable things. You can say, "Oh, these are the core activities. I think everyone should take a leadership role and take charge of one of the core activities so that we all get to do the things, and we all get to be a part of things." That can take the burden off the caregiver planning and hosting the event, but also keep the family traditions alive.

Chin: Now, what are some strategies when things don't go well? Even the best-laid plans might not be successful. If a person with dementia does become upset, what should either the care partner or the family member just trying to help out—what should they try to do?

Eastman: Yeah, I think, again, that pre-planning of knowing where the quiet space is and the quiet activities are, having a set of relaxing quiet activities that you know are effective, and then having designated people to keep an eye on everything—the tone and the tenor of the experience—and to say, "Oh, it looks like my loved one is having a moment. Maybe let's go do something like look at family photos or sing Christmas carols or talk about stories of the past or do a puzzle or something like that," so that it's not all on one person to constantly be vigilant, but having a team of people strategically in mind to keep an eye on things.

Chin: Alexis, you're really emphasizing, I think, this key part of the team—having your team and having a plan. I think you bring up a good point of, you know, this has to be personalized to the person living with dementia. What are their favorite things? What do they find calming? Bring those along. Prepare to have those. Sort of prepare for the situation and hope it doesn't happen, but be prepared.

Eastman: Yeah, and I think that's true. We see this in every setting. When you are a person with dementia or a person caring for someone with dementia, you're going to the hospital, you're going to the shopping mall, you're going anywhere. You want to have more time, and you want to have a plan because chaos and overwhelming events can happen no matter where you are. The holidays are just a brighter, more festive version of sort of everyday events. I think you have to have a thoughtful approach always.

Chin: Talking to you, though, does remind me though, I never want to pressure anyone to share information with people they're not ready to share. I think you did a nice job of explaining that in the beginning, but there are some real benefits of having those you love and are close to you know what you're going through and your care partner, because it does seem like that support, that planning, that help from others can lead to people really having a great and meaningful time living with dementia.

Eastman: Yeah, I think we are hopefully moving in the right direction culturally to know that dementia is not a moral flaw or failing or because of some past misdeed. I think in the 1980s, everyone thought cancer was because you failed on some level, right, behaviorally. We know that's not true. And I think that is also not true about dementia. Moving more and more towards a culture of acceptance—that difficult diagnoses happen to everybody and we all have to collectively come together to take care of each other—is a much better approach. And hopefully, that will allow families to come together and support each other too.

Chin: I always talk with my patients and families about the value of routine. It's helpful to establish daily routines because it grounds us, it orients us, and it requires less brain energy. In a similar fashion, holiday traditions can be important and tap into people's long-term memory. I use that long preamble to end our conversation today to ask you a personal question, which is: what is your most meaningful holiday tradition?

Eastman: Oh, that's a really good question. It's interesting because my parents moved here about 16 years ago from Pennsylvania where I grew up. We had to reinvent all of our holiday traditions because we were not having that giant kind of East coast holiday thing with the trees and, you know, the old-fashioned southeastern Pennsylvania sort of Victorian-esque-ness of it all. And my brother lives in Hong Kong, so not really coming home for the holidays. Over the years, what has become really valuable, again with the advent of video calls, is video-calling with my brother and his wife on a regular basis. Also, we take time once a year where my partner and I sit down with my parents for just a wonderful, quiet dinner. We sit around, we tell stories, we unwrap presents together. It's just a very calm, loving family evening. That's become something we've done for, gosh, a decade or more now since they moved here. That's really valuable to us.

Chin: Well, thanks for sharing that, Alexis. That does sound really nice. Before we end, I do want to take a moment and thank the listeners of Dementia Matters for tuning in this year. It's been a great year, and I hope everyone has appreciated the guests. I certainly have learned a lot from individuals like you, Alexis, and the people on the show. 2024 has been a big year in the field of Alzheimer's research with new treatments like donanemab breaking onto the scene and new studies investigating topics from the links between the gut and brain health and conducting cognitive screenings over smartphones. Dementia Matters has been there each step of the way to share these important developments. We published 23 episodes and reached listeners in over 120 countries just this past year. We're excited to continue this work in 2025. If you enjoy our show and want to support our mission, please consider donating to the Dementia Matters Fund through the University of Wisconsin Initiative to End Alzheimer's. All donations support outreach and production of our show, allowing us to continue reporting on the latest in Alzheimer's disease research, news and caregiver strategies. You can find the link to make an end-of-year gift in the show notes. With that, Alexis, thank you for being our final guest of 2024. I know I will be having you on again in the future, but I hope you have a wonderful holiday too.

Eastman: Thanks, Nate, and I wish you the best as well.

Outro: Thank you for listening to Dementia Matters. Follow us on Apple Podcasts, Spotify, or wherever you listen or tell your smart speaker to play the Dementia Matters podcast. Please rate us on your favorite podcast app – it helps other people find our show and lets us know how we are doing. If you enjoy our show and wanna support our work, consider making a gift to the Dementia Matters Fund through the UW Initiative to End Alzheimer’s. All donations go towards outreach and production. Donate at the link in the description. Dementia Matters is brought to you by the Wisconsin Alzheimer's Disease Research Center at the University of Wisconsin--Madison. It receives funding from private, university, state, and national sources, including a grant from the National Institutes on Aging for Alzheimer's Disease Research. This episode of Dementia Matters was produced by Amy Lambright Murphy and Caoilfhinn Rauwerdink and edited by Alexia Spevacek. Our musical jingle is "Cases to Rest" by Blue Dot Sessions. To learn more about the Wisconsin Alzheimer's Disease Research Center, check out our website at adrc.wisc.edu, and follow us on Facebook and Twitter. If you have any questions or comments, email us at dementiamatters@medicine.wisc.edu. Thanks for listening.