A Holiday Survival Guide for Dementia Caregivers
The holidays can be joyful, but they can also be overwhelming for caregivers supporting a loved one with dementia. In this episode of Hope Floats, Shoshawna Rainwater and Rachel Coady discuss practical strategies for simplifying holiday gatherings, reducing stress, maintaining routines, traveling safely, and supporting both the person with dementia and the caregiver.
Key Topics Covered
Why holiday stimulation can overwhelm people with dementia
Creating simpler holiday gatherings
Travel tips for dementia caregivers
Maintaining routines during the holidays
Managing caregiver grief and resentment
Holiday planning strategies that reduce stress
Key Takeaways
1. Simplicity matters.
Large gatherings, excessive noise, and overstimulation can create stress and confusion for people living with dementia.
2. Protect routines whenever possible.
Regular meals, sleep schedules, and familiar environments help reduce anxiety and agitation.
3. Travel requires extra planning.
Allow more time, proactively offer hydration and bathroom breaks, and be prepared for increased confusion and repetitive questions.
4. New traditions are okay.
Caregivers often benefit from simplifying celebrations and creating new traditions that better match their loved one's current abilities.
5. Caregivers deserve support too.
Feelings of grief, resentment, and exhaustion are common and deserve attention and compassion.
Resources Mentioned
Joyce Beedle's Soothers and Stressors framework
DAWN Method
Caregiver Action Network
National Alliance for Caregiving
National Council on Aging
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Shoshawna Rainwater (00:06)
Welcome to Hope Floats, a podcast for people navigating the challenges of caring for a person with dementia. I'm Shoshawna Rainwater.
Rachel Coady (00:14)
And I'm Rachel Coady.
Listeners, the holidays are a lot with or without the added pressure of caring for a person with dementia. It's a time of year with lots of expectation and stress and coordination. And today we wanna talk about navigating the holidays, how to survive and maybe even thrive during this holiday season when you're involved with caregiving for someone with dementia.
So on today's episode, we'll explore what our loved one with dementia is likely experiencing through some of the holiday events and also name the part of the holiday planning success is for caregivers to manage our own expectations, communicate what we feel, and need and make a plan that sets your person with dementia up for success even when it means our traditions and plans might look different. The holidays are coming up quickly, so let's jump in.
Rachel Coady (01:22)Shoshawna and I both come from backgrounds and families that tend to celebrate the mass cultural holidays of things like Thanksgiving and Christmas and New Year's. We know all listeners have different holiday celebrations and celebrate with family and friends differently. And we just want to acknowledge that we're coming with our experiences today, but not everybody necessarily has the same ones. We come trying to offer help for those of you that might be planning the holiday season ahead. And let's be honest, this year's holidays, if you do celebrate them, are probably going to look different than others with someone with dementia in your life.
Shoshawna Rainwater (02:02)
One of the things that we want to do is offer a reminder of what might be going on in the brain of a person with dementia that would make the holidays a lot more challenging. One of my mentors in this dementia landscape has been Joyce Beedle, who has worked as an Alzheimer's consultant here in Portland, Oregon. And I've talked about her really helpful Soothers and Stressors paradigm. Please see Episode 5 for more information about that paradigm.
One of the things that Joyce has brought forth after years and years of working with people with dementia and the people who care about them is sort of an overarching goal of as much as we can to enjoy being together. So if you see her give a talk, she'll write out on a big whiteboard, “enjoy being together.” And that might feel like a little bit of a no-brainer, but it actually is a helpful reminder in a setting of a disease that can be really challenging and tests our limits of feeling like we can enjoy the presence of our loved one experiencing brain changes. I love that that's sort of held up as one of the highest values.
How do we put 'enjoying being together' into practice, especially when caregiving feels difficult?
Three of the key ways to have a better experience with your person with brain changes is to try to infuse Simplicity into your days, Routine into your days, and Flexibility into almost every interaction that you might be having. Those are tall orders.
Shoshawna Rainwater (04:02)
Let’s talk about why Simplicity, Routine and Flexibility are important. And let's start by reminding ourselves of what's going on in the brain of a person with dementia.
In most dementias, if not all dementias, one of the areas that will be impacted is our prefrontal cortex, so our frontal lobe area. And that's the area that does many, many things for us. And one of the most important things that it does is filter out distractions and allows us to focus. So when that part of our brain is being impacted and changed by the dementia experience, nothing in terms of stimulation gets filtered out.
And in sort of typical mass American culture, the holidays are full of stimulation. So think about the average experience of our holidays. There's lots of lights: “the season of lights;” there's lots of noise, there's lots of distraction. And this can easily create overwhelm in the brain of a person with dementia, where in sort of a neurotypical brain, those things would not be bothersome. So if we think back to that soother and stressor paradigm we talked about in Episode 5, noise and stimulation and crowds are in the Stressors category. They may have once been Soothers, but now they've moved over into the Stressors category.
Rachel Coady (06:04)
So to your point, a person with brain changes, plus all the human energy infused in that stimulus. That's a lot to navigate.
Shoshawna Rainwater (06:13)
It’s a lot. So when I say Simplicity is one of the keys to successful holidays celebrations, it's because the brain of the person with dementia is having and will have more trouble filtering out those distractions and stimulus that we encounter every day.
Rachel Coady (06:54)What are some things that can help navigate the stressors – and even provide some soothing around this idea of simplicity during the holidays?
Shoshawna Rainwater (07:07)One of the key things that we can do is avoid holiday crowds. With crowds come a certain amount of bustling and noise and stimulation that can be easily overwhelming. But in fact, any gathering that we have during the holidays can be overstimulating for our person with dementia.
One of the really difficult realities that comes into play is that our gatherings with family and friends may need to look different. They may need to involve fewer people than they ever have before.
So, those big family gatherings where there's12 to 16 people perhaps… that kind of setting tends to be very overstimulating and overwhelming for a person with dementia. And there's some guidance that I've heard throughout the years of a gathering with four to five people maximum is probably going to be better and much easier for your person with dementia.
Rachel Coady (08:24)And then I think about our family is exuberant, expressive when we see each other. There's often music playing. There might be a lot of conversations at once. In our family when we gathered, it was always this balance of like, what could we include my mom in? Like how could we include her in conversation? How do you navigate those kind of gathering moments with the family and loved ones around this person?
Shoshawna Rainwater (08:54)By bringing a tone that is both positive and calm to the interaction. So warm, positive, yet calm. You can still be excited to see someone and convey your love and affection for them, but over-exuberance tends to be stimulating in a negative way for a person with dementia. One of the key things that we can do is to stop quizzing our person with dementia. And what I mean by that is to eliminate questions that put them on the spot for answers about who you are. “Do you know who I am”? Do you know my name?” Those kinds of questions create a lot of unease for people with dementia. And we want to minimize quizzing.
And people say, “Well, then how will they know who I am?” And I say you can always start with just your introduction. “Hi, Mom, it's Shoshawna. So good to see you.”
Sometimes my mom, who does not always recognize me, will say, “I know who you are.” And I say, “Of course you do. That's just habit. I don't know why I'm always introducing myself to people,” and just let it go. It’s a way to help ease that person's sense of feeling like they're being put on the spot
Rachel Coady (10:20)The holidays are core memories for a lot of us. And so simply asking, “What's one of your favorite parts of this time of year?” or, “What was a memory you have from Christmas as a child?” or something like that might help them access information that's available to them and participate without needing to know in the present everything that's going on and who's talking to them.
Shoshawna Rainwater (10:54)
I think that is really helpful for people who are still in early and somewhat in mid-stage. And you'll find that eventually you'll get a sense of whether or not even asking that question creates unease. If and when that happens, it's time to swap that approach and change it into a narrative approach.
And eliminate the question altogether. You can say, “Gosh, I'm having this memory, one of my favorite memories of our holiday time together,” and just offer that up spontaneously. Sometimes that lands.
Shoshawna Rainwater (11:37)I wanted to mention, as we talked a little bit about simplicity and reducing those peppering questions, we also want to try to keep a person's routine as close to normal as possible. That is not always easy to do during the holidays, cause when we think about routine, routine goes out the window for a lot of us during the holidays. And for as much as is possible, our people that we care about who have brain changes really thrive and benefit from routines. They will feel more calm and in control in a landscape that does not always allow them to feel calm and in control. And whenever we mess with somebody's routine, we can expect that there can be an uptick in agitation or an unease for trying to figure out “what am I supposed to do next?” It's a hard feeling to have to sit with for any of us. And it's a really common experience for people with brain changes
Rachel Coady (12:41)
I just wanted to add, I'm constantly a student in this journey of looking at the comparisons between beginning of life and end of life. And it's not dissimilar to a child. During the holidays, you try to keep nap time, you try to keep feeding times, you try to keep their routine for their own wellbeing and sanity and not being overwhelmed.
We protect boundaries really clearly when we have a young child. We do less well with that when we have an older parent. And I just invite that we could actually learn from the other side of life to help set some routine needs to our families and friends around the holidays.
Shoshawna Rainwater (13:19)
I really appreciate you bringing forth that there are a ton of similarities. Part of what we're doing with young people is respecting their brain's limits. And we're asking for that same kind of grace with people with dementia. It doesn't mean we're equating them as childish. But there are often characteristics/qualities that are not unlike those in our early developmental years.
Rachel Coady (14:08)What are some other ways that we can help a person with dementia through the holiday chaos?
Shoshawna Rainwater (14:16)I would say serving regular meals at regular meal times. Think about the amounts and quantities that get presented.
Keep outings to a minimum. Likely aim for one a day at most. More than one outing a day can be very overwhelming.
And encourage family members who don't live with a person with dementia to visit in smaller groups of no more than three or four people.
Rachel Coady (15:04)One of the great disruptors of holidays is travel. What are some tips we can offer to help with the travel aspect of the holidays?
Shoshawna Rainwater (15:19)If you're traveling with a person with dementia, one of the resources that I would want you to reference and get to know is a the Dawn Method, D-A-W-N.
The Dawn Method has a really helpful saying that's always stuck with me, which is: “When you are traveling with a person with dementia, it's always possible to get somewhere on time, but it's not probable.”
There are so many travel hiccups that you can't anticipate that are really common when you're travelling with a person who's experiencing brain changes. So you're going to want –and you're going to need – to fold in more cushion for travel than you can even imagine.
Giving yourself the gift of ample time, if at all possible, is going to help the experience go well. It becomes more and more difficult with disease progression to get a person with dementia out the door on time, or at least on our time. And that's because one of the losses in dementia is the ability to track time and read clocks. So deadlines, no matter how much we plea with them or say, “Hey, heads up, it's 8 AM and by 10, we got to be out the door.” That doesn't mean anything to people with brain changes over time. Those deadlines become irrelevant to them.
The other big thing that comes with travel is a change in environment. That's what travel is, right? We're taking ourselves out of our usual environment and putting ourselves into an experience of all new stimulation. And it's really normal for this stimulation and all new things to make sense of, to become overwhelming for the brain of the person.
You’re going to want to proactively offer things like routine toileting breaks, hydration breaks and not rely on the person with dementia to initiate those. And then there's also, I think, a serious issue of the potential for a person with dementia to get lost when you are traveling; there's a possibility of the person becoming lost in any new environment. And if you're choosing to travel with a person with dementia, please be prepared to watch them very carefully and try to keep them in your line of sight at all times. There’s great technology now with Apple watches and things like that that can help you track and identify where your person may be. It doesn't matter if your person with dementia has never wandered before. Traveling is a perfect opportunity for them to become lost. And the outcome from that can be really, really challenging, if not dangerous.
Shoshawna Rainwater (18:19)The other thing to expect is an uptick in the frequency of questions that the person with dementia might be asking.
Rachel Coady (18:31)
Yeah, we would go on a road trip and it was a lot of the same questions, a lot of looping. She was just confused because we took her out of a very familiar environment to meet our family.
Shoshawna Rainwater (18:40)
That's right. So those questions, “Where are we going?” And we probably have just told them minutes ago, but they will ask it as if it's the very first time they have heard the information.
Rachel Coady (19:51)
Yes.
Shoshawna Rainwater (19:52)“Why are we going here?”
“Where are we going?”
You can expect that you will get those questions very frequently. And sometimes when we say frequently, we mean like within seconds. If you're lucky, minutes.
One way to get around that is to offer, this is exhausting, but it's actually probably no more exhausting than the aggravation that comes with repetitive questions. But you can offer proactive narrating reminders. “I'm so glad we're in the car going to so-and-so's house today. I'm so excited about this plan.”
Rachel Coady (19:29)
Yeah, that offers information and reassurance, which is helpful when you're in an unfamiliar place.
Shoshawna Rainwater (19:35)
That's right. And we notice when we do that, it actually starts to reduce the number of questions a person asks, right? Because they're carrying from moment to moment, a greater sense of ease, right? Like they're not having to feel so concerned. “Why am I in this car? Where are we going?”
So flexibility is another key to successful holidays. And that involves asking ourselves truly the question, “What is my person with dementia capable of?” What does a successful holiday season, for them, look like? And oftentimes as the brain changes are happening, as we've discussed thus far, less is more.
It includes adjusting our expectations around what our person can handle with regards to stimulus, the decorations, the shopping, traditions, people, gatherings, those kinds of things. And it requires us to think about designing holidays around their needs and abilities, not ours. And I think that's really a hard thing for us to begin to wrap our arms around. The holidays are gonna look different now. It can be quite challenging. And you and I have talked, Rachel, about this idea that the holiday doesn't actually have to be celebrated on the day of, right?
Rachel Coady (21:01)I think it can be challenging. There's loss. But I also think it can be full of new and different. And in our family's final holiday years with our mom, we were able to do some things that were not our traditions, but did feel like they were successful for her and kind of less stressful for us. So we can talk some more about that, too.
We have some other holiday hacks that might help you navigate this time of year. We have an extended list and more information on our website.
Look for ways that you might be able to bring the holiday world to your person with dementia if traditionally you took them out into the holidays. So that could look like YouTube videos to watch together or watching concerts or church services, carolers online with your loved one. It brings the tradition into their home and it doesn't have to put them in those vulnerable places of crowded, noisy gatherings. Things like: keeping decisions simple and activities reasonable.
So if they can still participate in things around the holidays, give your loved one tasks that they can handle. My mom used to love setting the whole table and that turned into, “it would mean a lot to me if I could set the table this year, but could you fold the napkins and put the napkin rings on?”
If they can't do all the gift shopping they normally do, maybe say, “Hey, while I was out, I got these things. But if you could wrap them or if we could wrap them together, that would be so helpful.” Things that let them have power and ability where they can, but don't ask them to overextend themselves.
If they normally were a card writer this time of year, maybe it's a family card that we all send from the whole group instead, or they are capable of doing craftings. “Hey, it would be fun to make some decorations together.” It's a time to get creative, honestly.
We also use “therapeutic fibbing,” which we've talked about in previous episodes, at the center of our requests so that we were asking our mom for something that she could do a nd we framed it around how meaningful and helpful that would be to us. So an example: “We know you have normally hosted the big dinner, but this year we'd love as a family to try going to a new restaurant instead.”
I know we love our holiday traditions, but I just want to offer that this disease can also open up permission to create new traditions; instead of the traditional Thanksgiving dinner that we did many years growing up, when dementia became a part of our holiday experience that we needed to consider, that turned into, “hey, would it be nice just to do a simpler meal this year and maybe have some turkey noodle soup and sandwiches?” It wasn't quite the meal that we'd still look forward to. And I ended up having the big meal with friends on a different day. But we avoided travel, we avoided cooking, we avoided massive cleanup. And she was able to just enjoy the day and didn't really know what she was missing. So I think any opportunities like that where you can just ask yourself, “Is there another tradition that we could do here instead that would be easier?” can be helpful.
And then don't forget to look for technology that can help make the holidays smoother and safer. We live in a pretty automated world. So timers for lights, battery flameless candles, so there are no candles left burning. Asking for a meal train from your friends and your team if it's gonna be a hectic time. Look at sites like care.com for some help and assistance during the holidays if you have those resources. These new apps and tech can really help make the holiday smoother.And then finally, this is a personal favorite of mine, but no matter what the holidays look like for you and your loved ones, I really encourage you to take photos together. Year over year, the holidays are going to look different and later the holidays will be different again and you'll be glad that you have photos together this time of year. So take pictures even if the holidays don't seem like what they normally are.
Shoshawna Rainwater (25:20)I love those hacks. Those are great.
Rachel Coady (25:23)
Shoshawna, one other thing to acknowledge is that being a caregiver, there's a lot of emotions. There's a range of emotions that we go through in these holiday experiences. Let's just name some of those for our listener and acknowledge kind of what else can come up for us as the caregivers during the holidays.
Shoshawna Rainwater (25:41)
We don't want to assume anyone's narrative, but it's really normal for people to feel grief during the holidays as they're wrapping their minds around a new normal—and a normal that will continue to look different, right? That will need to be adapted to over time. It can be very grief-filled to realize that things look different than they ever have before. I think that grief deserves to be felt and held with caring others.
Rachel Coady (26:14)Give yourself that room and permission to feel the difference. That's okay.
Shoshawna Rainwater (26:19)
It's a grief to be processed not with your person with dementia. It's one of the significant losses in this disease landscape. We've talked about that and we'll talk about it again in Episode 7 around “ambiguous loss.” But the grief that you might feel in this experience is to be processed with caring others, but not with the person with dementia because it's asking too much of them to hold that grief.
Certainly if they're grieving and expressing grief, we can co-hold that with them. But our own grief experience around the losses needs to be held and processed with caring others, not the person with dementia. They're doing the best that they can. And they would hold it with you likely if they could, but they can't any longer. One of the other feelings that a lot of caregivers share is a feeling of resentment.
Rachel Coady (27:22)That’s real. That’s super real.
Shoshawna Rainwater (27:24)I have had it too and would expect that anybody in this role is going to have some levels of resentment because things have a tendency to look different and not in ways that you would want them to.
Rachel Coady (27:41 )
Yes, you can feel like you're the one who has to “do the holidays” with your person with dementia. And everyone else is just allowed to kind of celebrate and do whatever they want to. A human response would be to feel resentment around that.
Shoshawna Rainwater (27:58)The next feeling that a lot of people describe is embarrassment or feeling bad about having that resentment.
I have three of the most fantastic siblings on the planet. And we are close and loving and care really deeply about each other. And I also experienced some growing resentment when I was the primary person in charge of my mom. It wasn't because they weren't showing up in the right ways so much as it was my feelings of real anger at what my life was looking like. And also this layer of hearing and seeing through pictures and phone calls what their holidays looked like and realizing “ugh, mine doesn’t look like that.”
Did you have that experience too, Rachel?
Rachel Coady (29:00)
Mine was different because my sister has children. And so it was me wanting those kids to have a “normal Christmas” and to have normal things. We don't live in the same state. And so we worked together and she made room for me to be very honest about what I wanted and expected during the holidays.
I think these are all very common experiences across the spectrum of families going through this. There's not one right or wrong way to navigate the holidays.
Shoshawna Rainwater (29:28)
Yes.
Rachel Coady (29:30)
We do have some tips. I just want to offer a shout out to the caregivers, here's some holiday tips for you.
The first ones is really important. It’s to feel the power of asking for what you need this time of year. The holidays are exhausting for all of us. So I want you to really think about what you need to be successful and what you might need to say “no” to this year on behalf of yourself or your loved one.
Admit that the holidays might need to be simpler for you this year. Most people can be understanding, looking at the enormity of responsibility that caregivers have to accommodate that. And it's hard to say “no,” but think about what you really need. What's the right thing for you? And don't be afraid to give that voice and share that with the people around you, especially your team.
I ask for you to give yourself permission to think about what you really want for your holiday.What is the most important thing to you? It could be designated time with friends or a holiday movie marathon with hot chocolate. Could be a little weekend away. Maybe you want to host a small gathering without interruptions.
If you plan ahead and ask for what you need and share why it's important to you, it's often possible that other people would love to step up and help make it happen. They can't read your mind. As much as we'd love that. So, caregiver, look for ways that you can claim part of the experience you want to have and make it happen for yourself this holiday season.
Having conversations early with other family and friends of the loved one with dementia, of their team, and on your team before the holiday busyness gets here is crucial. So it's easier to talk about this proactively than to wait for the people around you to offer and guess what you need and want. And everyone is busy. Everyone's got high stress. And so it's better just to be as clear as possible.
And I was lucky in our situation to have a conversation with my sister, you know, way upstream from the final holidays and say like, “this is what I do and don't want. I really want to get away. I really want to celebrate my birthday, which is around the holidays, on my own.” And we made plans together, whether it was her coming out here, us finding other people that could step in to make the things that I wanted to have happen happen. It was a really profound experience for me to work with someone on making the things that I needed to happen, happen.
Shoshawna Rainwater (32:06)
Like Brene Brown says, “Clear is kind.” We can't expect people to read our minds. As lovely as that would be.
Rachel Coady (32:14)
And then, finally, listener, I would say give yourself the gift of help this holiday season.
If you need a companion or caretaker to be there for some of the days to help, you have some free time for like events or cooking or shopping or gift prepping. Ask for what you need and see who can step in and help see who has an extra couple of hours, you'll be surprised at how that can be received, I hope, by asking for what you need and what would support you.
You can learn more about these tools and other tips on our website as well, but hopefully these are helpful.
Shoshawna Rainwater (32:52)Those are great, great tips and insights, Rachel, thanks.
On today's episode, we talked about navigating the holidays in the cues of simplicity, routine, and flexibility. We also discussed some helpful hacks to holiday experiences and offered some caregivers during the stressful time. We wanted to shout out to you all that November is National Family Caregiver Month. It's been around since 1994. So take a moment this month to acknowledge and support the family caregivers in our lives. And that can look like reaching out, offering help, expressing gratitude. Gratitude for what someone is doing helps sustain people.
Rachel Coady (33:38)Totally. It's a big deal.
Shoshawna Rainwater (33:40)Yeah, it makes a difference. There's a couple of good resources out in the caregiving world. National resources, the Caregiver Action Network, the National Alliance for Caregiving, and the National Council on Aging all have good resources for caregivers and we'll put those up on our website.
On our next episode, we're going to discuss the concept and experience of “ambiguous loss,” understanding what it is and why it's so prevalent in dementia. Thanks so much for being here and thanks for listening.
Rachel Coady (34:21)You can always reach out to us here at Hope Floats with your questions or with topics you'd like us to discuss on the podcast. We're here if you want to share your experiences and let us know what could help you navigate this journey. We want to support you.
