Are you caring for someone living with dementia? Expert offers tips to weather a hurricane

Seeking shelter during storms like Hurricane Ian can be challenging for many Floridians, but caregivers of people living with dementia often face added hardship.

It can be difficult for caregivers to travel with someone who has dementia so evacuating far from home isn't always the best option, explained Lindsay Peterson, an assistant professor with the University of South Florida's School of Aging Studies. But there are a lot of challenges with visiting local shelters or hunkering down as well, she said.

Peterson and her colleagues recently published a guide to help caregivers prepare for disasters. Health News Florida’s Stephanie Colombini talked with her about her concerns for caregivers during Hurricane Ian.

What are some of the difficulties people caring for loved ones with dementia face during disasters?

They are so busy with their day-to-day responsibilities taking care of their loved one, you know, their mother, father, spouse, etc., that they really don't have time to do a lot of preparation. Some do. There are always people out there who are great planners, and they think way ahead. It’s just part of what they do. People who are more well off financially, they'll have everything that you need. They'll have generators, the [hurricane] windows, they usually have home help coming in.

But there are a lot of people who don't have that help. And they're a 24/7 caregiver and hear the storm is come along, and they may not be ready. And the public shelters are really not a very good place for them. A lot [of caregivers] that we talked to said, “I would never go to a shelter. My father, my husband, would never survive in a shelter.” So a lot of them just stay home.

What are some of the challenges with shelters?

We really need shelters that are appropriate for people with dementia, and a lot of shelters, their staff are trained in how to work with someone and what to expect for someone who has dementia. At the same time, the environments are just not great. They're crowded, they can't necessarily find a nice quiet corner where their loved one is going to feel safe and comfortable. The meal schedules may be off, everything may be off.

And the one thing about caring for a person with dementia is that they need regularity, they need normalcy. Any change from a routine can be alarming and can set off, you know, any kind of behavior. And if you're, say, a wife of someone in this situation, and you have to handle the emergency, and you have someone with you who's panicking, it can be difficult.

Definitely. For the people who have decided to shelter in place, what's your advice for them? That's got to be tough as well.

Securing your house so that they [person with dementia] can't run out in the middle of the storm if they get panicky. We heard stories about people with dementia getting very disoriented and upset when they were in the dark. They might start roaming around the house.

One story we heard was a gentleman that was a husband with dementia, accidentally locked himself in his bedroom in the middle of the night with no electricity, and was extremely upset pounding on the door, not knowing what to do. And here's the caregiver on the other side of the door. Now this one was very smart, she took her cell phone and slipped it underneath the door so there would be light. And that was enough to help him figure out how to open the door and get out.

But having light is super important. And there are different ways to do that. There are battery operated lanterns, different things that you can set up around your house to make sure that in every room, there's light and that you can avoid something happening because of the disorientation of being in the darkness.

Also things like making sure that you have their comfort foods there to serve and things that comfort the person: a blanket, a stuffed toy. Things to create a distraction, you know, games, puzzles, anything that you can do to try to lower that anxiety.

And a big part of that also is the way you communicate with the person, being calm, not projecting any panic, speaking very concretely, giving very specific instructions and taking into consideration that they're watching you. They're watching their caregiver to figure out whether they need to be upset.

What are you most concerned about right now?

Being without electricity can be a real concern, if anybody is using any kind of electrical equipment.

Hopefully we don't have anybody who is in a mandatory evacuation zone, who finds themselves in trouble in the middle of this storm. Because if it gets very bad, and you get into trouble after the storm has started, it's going to be very difficult for someone to come and help you. And that's who I worry about are the people who haven't gone somewhere because maybe they didn't have anywhere to go. Maybe they didn't have any way to get there. Maybe they just felt like they couldn't travel with their loved one. And it's really important to get as much help as you possibly can and to reach out to people.

And what can the community do in the days following the storm to help these caregivers who, you know, many of them are going through this very stressful situation and caring for their loved ones on their own?

Yes, that's a great question. So one thing that we really want to alert people to is if you know of anybody who is a caregiver, please check on them. Because chances are they might not have prepared and they might be taking care of someone who needs a lot of help, who might not be aware of what's going on but who might be panicking with the change of circumstances.

When someone's home is destroyed, or even not even destroyed, but they have a crisis with themselves or with their loved one with dementia in a disaster, chances are one or both of them might be more likely to have to go into a nursing home after that or wind up in the hospital. So this is a practical problem of keeping people safe and healthy in order to keep them in the community. So we've got social services that can help with that, but also neighbors can help with that.

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