Holiday Tips for Dementia Caregivers

The holidays are a joyous time for many, however it can be quite stressful to caregivers of a person with dementia. Geriatrician Dr. Alexis Eastman discusses the most important tips and safety precautions for dementia caregivers this holiday season.

Guest: Dr. Alexis Eastman, Division of Geriatrics and Gerontology, University of Wisconsin School of Medicine and Public Health

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Dr. Alexis Eastman

Show Notes

Dr. Alexis Eastman is a geriatrician at UW Health in Madison, Wisconsin. She is an expert in aging issues and helping patients and families navigate the aging process. She is a frequent contributor to healthy living articles. Read some of them in the links below:

"What Research Says About Preventing Alzheimer's"

"Eight Things You Should Know About Aging"

"How to Avoid Medication Interactions As You Age"

Transcript

Nathaniel Chin: Welcome to Dementia Matters, a podcast presented by the Wisconsin Alzheimer's Disease Research Center. Our podcast is here to educate you on the latest research, caregiver strategies, and available resources for fighting back against Alzheimer's disease. I'm your host, Nathaniel Chin. Thanks for joining us.

Welcome back to Dementia Matters. I'm here with Dr Alexis Eastman. Doctor Eastman is a geriatrician with UW Health. She provides primary and memory care for older adults in both the clinic and hospital setting. Dr Eastman has been named multiple times to the Madison's top doctors list and was selected by the UW internal medicine residents for the Department of Medicine's Physicians' Physician Award. Today, I have asked Dr Eastman to join us so we can discuss home safety tips, the best ways to prepare our loved ones with dementia for the holidays and family gatherings. Dr Eastman, thank you for being here.

Alexis Eastman: Thanks for having me.

Nathaniel Chin: So to begin, what are some of the most common concerns patients and families ask you in regards to large family gatherings?

Alexis Eastman: You know, I think the biggest thing that I get asked is simply how to navigate these situations because these are large, complicated, chaotic events and the caregiver is already in a position of stress. It's a lot of work to take care of someone with dementia, and then to add onto it the traditional large volume family meal, that can be pretty intense. And so they're really looking for tips on how to just navigate the overall chaos that happens.

Nathaniel Chin: That's really from the beginning where you're planning the event all the way until everyone leaves the home.

Alexis Eastman: Absolutely. You know, and as in so many things with dementia, the real key is the fact that it takes so much more time and you've got to plan ahead. You can't go into anything blind when you're a caregiver with someone with dementia. You've got to be thinking a week, two weeks, three weeks before these holidays happen so that you're ready.

Nathaniel Chin: So what kind of questions do people ask you?

Alexis Eastman: So one of the first things they ask about is what do I tell other people? What do I tell the guests? What do I tell my family? How do I explain to them that so-and-so is different? Maybe they haven't seen grandma for two to three years and everything's changed now. And they want to know how to do it politely, but also honestly. There's still a lot of taboo around the d word, so how do you give yourself permission to say, So-and-so has dementia? If you're a particularly tight knit family, maybe you just need to have a video chat meeting where everybody gets together and says, this is the way it is. This is what we can expect. But otherwise you may have to call people before an event or write them cards and say, you know, you may notice that grandma has changed since you saw her. Among those changes you may see are and then list off the things that grandma might do. You may need to remind them that grandma's not going to follow social norms anymore. She might chew loudly or her mouth open or talk loudly or interrupt people or get angry or pass gas at the table, or grab the butter. Get distracted and walk away. People need to know those things.

Nathaniel Chin: In essence you want to prepare people because how they respond to the person with dementia really does determine the next results or the next interaction.

Alexis Eastman: Absolutely. You know, if someone gets angry because the person with dementia is upset or doing something rude, then that just escalates from there and pretty soon people are throwing stuffing and it's just a mess.

Nathaniel Chin: Well, do you have, speaking of stuffing and the upcoming winter holiday, do you have any specific holiday safety tips that you tell families who are hosting the gathering as well as taking care of the person with dementia?

Alexis Eastman: Yeah, I think the first tips or basic home safety, you know, anything that involves fire needs to be secure. So if you are lighting candles, for example, make sure that you're not leaving unlit candles or matches around the house where the person with dementia might decide to light them when you're not around it. In fact, it's actually a better idea of you can switch everything possible to LEDs. You know, Christmas lights are fine. The traditional Christmas lights are fine, but they're more prone to electrical fires if the tree goes over than are LED lights. LED little window candles obviously are not going to light your house on fire. These are all things that you can do. One of the other things that is recommended is to avoid things that look like edibles but are not, so fake fruits, fake vegetables, fake cornucopias -- don't give someone the ability to crack their dentures on a big piece of plastic apple. And finally, if you guys are like me, there's a lot of stuff that sort of starts to accumulate in the holiday decoration kind of world. Anything that twinkles or blinks or flashes or makes loud noises can be a particular source of agitation and difficulty for someone with dementia. And then all the boxes that they came in that start to litter up along the pathways in the hallways can create a huge falling risk, especially if someone can't really quite orient themselves anymore. So maintaining as much cleanliness as possible but also trying to keep things as secure and safe as possible.

Nathaniel Chin: And that makes a lot of sense because with holidays comes clutter and that's stressing just to look at. But it's also a risk factor in someone falling or becoming agitated.

Alexis Eastman: I mean, I know I've tripped over tinsel, so if I gave someone else who has even less ability to navigate a system, the ability to trip over tinsel, it would just go very badly, very badly.

Nathaniel Chin: And what if this is an overnight visit or people are traveling? What are some additional tips for those family members?

Alexis Eastman: Yeah, one of the biggest sources of concern I get from families are how to navigate airports. Air travel is enough to cause frustration and anxiety and agitation for every single one of us. So I recommend if you're really concerned to talk to your doctor first, but the real key is simplification. So you want to use as few layovers as possible, and you want to use a wheelchair service. You want to make sure there's lots of time between your layovers, and you want to find where the quiet places in the airport are. So most airports have a chapel or a meditation room. And if you need a time out away from the hustle and bustle of the airport, that's a really useful space for all of us, not just someone with dementia. I always recommend that people travel on off days. So yesterday being the day after the Thanksgiving weekend would have been a horrific day to do air travel with a person with dementia. And have them go through security before you so you can help out -- don't be the first person through security. I also recommend that people check their bags because if you have to help someone else navigate, you don't want to be carting around a whole bunch of overhead bags. And finally make sure that they have some sort of identity bracelet or contact information tucked into their wallet so that if you guys do get separated, someone can help them figure out who they should be contacting to get back in touch with you.

Nathaniel Chin: Do you recommend that families, caregivers call ahead to the airlines to say, we've been booked on this flight, my loved one has dementia. Or is that not needed?

Alexis Eastman: You know, it never hurts. When you're checking in, I recommend that you check in with the person not with the kiosk, and then that would be a good place to tell them something like that face to face because maybe they can streamline you through a different security line, which might make it a little faster and a little less stressful.

Nathaniel Chin: Now, what are some strategies when things don't go well? Even the best laid plans might not be successful, and so if a person with dementia does become upset, what should one do?

Alexis Eastman: The most important concept in dealing with agitation in dementia is the concept of the timeout. You really need to find the quietest spot, a place where you can sit down and engage in a reorienting behavior. Something like a puzzle or a song, maybe the person needs some headphones to put on so they can just listen to some music and kind of zone out in the middle of all of these crowds and chaos. If you're in someone's home that can be going to a separate room. This is a great time to enlist the help of well loved grandchildren or nieces and nephews, because if you have a signed helpers who are supposed to check in on grandma every so often and make sure that she's not getting too anxious or upset and then take her off to do an assigned task like sing carols or look through the family photo album and ask who the who is this in a storytelling sort of activity. Those things are great ways of resetting and it takes a little of the burden off of you.

Nathaniel Chin: And when you speak of preparation, it seems to me that it might be advantageous for families to kind of have a list of things that they know their loved one enjoys and when times get go to that list and start using those as options.

Alexis Eastman: Absolutely. You know, most caregivers know how to calm someone who sundowns and who has to end and gets anxious. Especially in public places. And having that list and distributing that list amongst your family members can be a really useful way of getting everyone involved in the care of someone with dementia.

Nathaniel Chin: So here's a tough question I get in clinic a lot and I just want your opinion because the evidence goes both ways. What do you say to families that ask Can my loved one with dementia have alcohol during the holidays?

Alexis Eastman: That's a tough one. You know, I think most of us say that you really want to minimize that as much as possible. You really don't want to take away any social inhibitions from someone who has probably very few. That said alcohol can be an important part of certain people's holiday rituals, in which case you may want to just water it down.

Nathaniel Chin: So often with the holidays, this is a long occasion, meaning people come in the early afternoon, I can go into the late evening, and for people with dementia that can be quite stressing and exhausting and people may actually sundown, where they get confused. What do you recommend for people who are hosting this party and the event goes a long time.

Alexis Eastman: Yeah, so most people with dementia have a time of day that's their best time. And I would highly recommend that if you're in control of when the event is happening, that's when you have the event. So maybe you're not having a holiday supper, maybe you're having a holiday brunch. That's one thing that people can do. The other thing is to give yourself permission to leave early and let everybody know that that might happen and say, look, you know, granddad gets a little bit anxious after 7:00 PM, we're going to have to bow out at that time. Or if you see things starting to go down hill just saying, you know, I think it's time for us to go home, but thank you so much. This was a lovely evening. And I think the final thing about that is that someone else can also take care of them for a little while. If there's something in the evening that you really want to do as the caregiver, recruit those family members, recruit those friends to say, Oh, you offered to help out, would you do this for me so I can go to this evening thing that I know that he or she can't go to.

Nathaniel Chin: What is the most important thing for families for a member about spending time with a loved one with dementia during the holidays?

Alexis Eastman: You know, I think it's multifactorial that the main key to having a great event with someone with dementia is to keep things as simple as possible, but to include them. So again, this requires pre-planning. What are the things that this person can do? Can they roll cookies? Can they decorate cookies? Can they chop the vegetables? Can they fold the table linens or set the table or arrange the food on trays. How could they be a part of the preparation. But at the same time you want to keep it simple. This is probably not the year to cook an elaborate meal for 40 people all by yourself. This might be the year to have a potluck or a cookie party or get it catered by your local grocery store. And finally making sure that everyone is remembering that the person with dementia is not their diagnosis. So I like to remind people that the emotional response you can elicit from your loved one with dementia lasts far longer than the memory they have of you eliciting that emotion. So if you make someone feel happy during the holidays, they will feel happy for 24 to 48 hours after you have left, even though they might not remember your visit. And I think that brings real meaning to families' interactions with patients with dementia during the holiday season.

Nathaniel Chin: That's a wonderful suggestion and really the holidays are about family, so let's incorporate our family as we care for someone with dementia.

Alexis Eastman: You know the more people in the family who know what you're going through, the more they're going to be able to help you.

Nathaniel Chin: Well, with that I want to thank you, Dr Eastman, for coming on Dementia Matters.

Alexis Eastman: Yeah, thanks, Nate. This was really fun.

Nathaniel Chin: And we'll have you again in the future.

Alexis Eastman: Great.

Nathaniel Chin: Dementia Matters is brought to you by the Wisconsin Alzheimer's Disease Research Center. The Wisconsin Alzheimer's Disease Research Center combines academic, clinical, and research expertise from the University of Wisconsin School of Medicine and Public Health and the Geriatric Research Education and Clinical Center of the William S. Middleton Memorial Veterans Hospital in Madison, Wisconsin. It receives funding from private university, state, and national sources, including a grant from the National Institutes of Health for Alzheimer's disease centers. This episode was produced by Rebecca Wasieleski and edited by Bashir Aden. Our musical jingle is "Cases to Rest" by Blue Dot Sessions. Check out our website at adrc.wisc.edu. You can also follow us on Twitter and Facebook. If you have any questions or comments email us at dementiamatters@medicine.wisc.edu. Thanks for listening.