Understanding Dementia And 'Wandering' People suffering from dementia display many common behavioral traits, and one of the hardest to manage and understand is wandering. Correspondent Linton Weeks talks about his recent report for NPR.org entitled "The Mysteries of Dementia-Driven Wandering."
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Understanding Dementia And 'Wandering'

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Understanding Dementia And 'Wandering'

Understanding Dementia And 'Wandering'

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Local news reports this story so often, it can get lost in the static. An older person suffering from dementia wanders off and is usually found in a car or by the side of a road, headed toward the faraway past, a childhood home, to pick up kids long since grown.

Scientists are not sure why Alzheimer's patients wander, but about half of them will suffer serious injury or death if they are not found within 24 hours.

If this is your story, if you have a loved one or a patient who's wandered off, tell us your story: 800-989-8255. Email us: talk@npr.org. You can also join the conversation on our Web site. That's at NPR.org, click on TALK OF THE NATION.

NPR's Linton Weeks wrote "The Mysteries of Dementia-Driven Wandering" for NPR.org, and he's been kind enough to join us here today in Studio 3A. Nice to have you with us on the program today.

LINTON WEEKS: Thank you, Neal. Good to be here.

CONAN: And as you note in your piece, we're humans. We're all wanderers.

WEEKS: Yeah. It fascinates me, actually. It's the mysterious quality of it that fascinates me.

I've read about the science. I've read about the decline of cognitive skills. But it's the need to go some place, to go home, even when you are home, that I think drove me to write this story.

CONAN: Go home even when you are home, often a home you don't necessarily recognize as home.

WEEKS: Right. And that's a recurring motif in these stories, is someone will be home. They'll be at the home where they've lived for decades, maybe. And they'll insist that they really want to go home. And they may pack their bags. They may stand at the front door. They may throw a tantrum. And where is it exactly they want to go? I'm not so sure.

CONAN: And do they have answers? Most of them are found, but are there answers that we understand?

WEEKS: Well, I'm working on it. I don't understand. But I do understand the need, the desire to move, the restlessness, the sort of need that we all feel…

CONAN: Mm-hmm.

WEEKS: …to get up and go.

CONAN: This is, of course, one of the oldest stories that we know about. The "Odyssey" is a story of wandering.

WEEKS: Right, and "The Rime of the Ancient Mariner." And I mentioned Steinbeck in my story because the picaresque tale, the wandering lost soul, the pilgrim, it plays to something deep within us.

And I assume that when things begin to change in our heads and we revert to certain childish ways, or we revert to ways that we haven't acted for years, that maybe we are reverting to something even deeper than we know.

CONAN: There was a lovely line in your piece about when our lives turn to thin broth.

WEEKS: Well, it is a little like that. And I've been around people who are near death and people who are in the last days of life. And, you know, it's just something that - they're there, but they're not there-there.

CONAN: It's too often the case, there are now - what? Four million people who are believed to have Alzheimer's disease. And this is one of those ailments that is just burgeoning with the growing population growth of people who are going to be in their 70s and 80s.

WEEKS: One of the - George Mason University says - you know, well, now, there are, you know, there are 4 or 5 million people with Alzheimer's. They think it's going to go to 20 million soon, or in the near future.

And one of those stories that really got me interested was a guy in Maine - I actually talked to a bunch of people in Maine, it seemed like the stories are related - who was interested in long-distance trucking and had been a long -had done the long hauls over the years, had a bunch of trucker friends, also liked to wander, leave his home, walk in the woods, come back. One day, he didn't come back. And his family, the Springer family really doesn't know whether Chuck, their guy, is a mile away in the woods or whether he's thousands of miles away.


WEEKS: And I just - that was chilling to me, really.

CONAN: Yeah. It's, of course, chilling for the family. But on the other hand, in his mind, home may have been the cabin of a semi.

WEEKS: Exactly, yeah. Exactly.

CONAN: If this is your story, if you have a loved one who has wandered, if you have a patient who has done that, give us a phone call, 800-9898-255. Email us, talk@npr.org.

Ruben is with us from Galt, California.

RUBEN (Caller): Hello?

CONAN: Hi. You're on the air, Ruben.

RUBEN: Okay. My mother-in-law is 85. And starting last year, she started wandering and we had to block off her driveway, put up a gate. It ended up escalating, putting an electric motor on it, putting an electric lock on it. And the big problem we had wasn't with her. It was other people in the family who were in denial.

WEEKS: That's interesting.

CONAN: They didn't want to accept that…

RUBEN: She'll come back.



RUBEN: You know, she'll go off someplace but she'll come back. She didn't, you know - once somebody around the corner found her and brought her back. And she's wandering along, she'll pack up bags each morning and she wants to go. At times we'll go up to visit, and she'll be standing at the gate looking over it, and you know, she can't get out but she would like to.

CONAN: Does she tell you where she wants to go?

RUBEN: No. She doesn't know who we are. You know, we will have situations - I'm a son-in-law, and you know, she might remember that I am her daughter's husband, but she doesn't remember that she has a daughter. She'll - I don't have any children.

And it's not real extensive yet. I mean it's bad, but it will get worse. But as I say, the biggest problem we run into is her husband's 85, and we're starting to talk about maybe she needs to go to a home. It's harder for him to deal with it.

WEEKS: That's one of the things I didn't get into in the story and probably should have. I do empathize because I did hear a lot of stories about people who were dealing with patients who on the one hand were perfectly in their right minds some of the time, and then at other times were not. And it was never really clear if someone was just going out to the store.

Or one of the families I talked to, the woman got in her car, drove off like she does often during the day, and just kept driving. And she ended up out in the woods, hours away, and in the mud with one shoe on. And fortunately, they found her and brought her back. But they weren't ready for that. They weren't prepared for that.

CONAN: Ruben, we wish you the best of luck.

RUBEN: We could use it.

CONAN: Thank you very much.

RUBEN: Thank you for the subject.

CONAN: Bye-bye. Let's see if we go next to - this is Cliff. Cliff with us from Aquebogue in New York.

CLIFF (Caller): Hi.

CONAN: Go ahead, please.

CLIFF: My dad's had Alzheimer's for the last 10 years. He's currently in a nursing home up in Massachusetts. He would get angry and frustrated with his disease, and he would just walk right out the door and be gone in a flash. He's a very fast walker. And he would just disappear, it was unbelievable. And the strange thing is that he can still walk now in the nursing home, but nursing homes just don't want these people to walk, they don't want them to wander. They don't allow them to do that. And so it causes even more frustration and he goes - he's been kicked out of several nursing homes for this, and it's a huge, huge problem.

CONAN: And again, did you have any idea at any time where he was going?

CLIFF: No idea. No. He'd just go - he'd bolt. He was like gone in a heartbeat and you'd have to just drive around and look for him and call people and, you know, hunt. It was just incredible. And he would be gone, he'd be walking, you know, like two, three miles away. Incredible.

WEEKS: Well, as somebody pointed out to me, it's important that people get exercise in order to keep the mind nimble and agile. And so walking is a good thing. And there is good walking, but then there's also walking that can get dangerous very fast.

CONAN: Mm-hmm. There's also, as Cliff points out, there are behavioral aspects of Alzheimer's where people do get angry for little or no reason whatsoever, and it's very difficult to deal with. And those frustrations of not being there, not having the command of the faculties that you used to take for granted, which can make anybody incredibly frustrated and incredibly angry.

WEEKS: I have a friend…

CLIFF: (unintelligible) you should know - you guys should know that this is a huge problem and nursing homes cannot deal with this. And it's become so bad that patients are routinely, every day, are thrown off, thrown out of these nursing homes to hospitals, and the hospitals can't deal with them. The hospitals are rejecting them. And so you end up in this no man's land, you know, this in-between place where you're thrown into an emergency room in the middle of the night because your dad has wandered and there's nothing you can do.

So you have to go through this whole system of getting the drugs, being medicated, and then the medication becomes too much. And that overwhelms the person and there are - it is like hell on earth, I have to tell you.

CONAN: I'm so sorry, Cliff.

WEEKS: Yeah. Me too.

CONAN: Thanks very much for the phone call.

CLIFF: Thank you very much for the time.

CONAN: There's an email from Cindy in Louisville. My grandmother had senile dementia due to diabetes-induced mini-strokes. She moved in with my parents and everything went fine until my grandmother started leaving in the middle of the night - once, with just a book. Luckily, the neighbors happened to see her walking in the neighborhood and brought her home at midnight. When I asked her what she was doing, she answered, I'm going to a party.

This behavior, more than any other issue, led to my parents' decision to put my grandmother in a nursing home, a difficult decision. But they couldn't stay up every night listening for her to leave or barricade the doors. And that's what it comes down to. And that time of day is interesting. There's a phenomenon called sundowning. Explain that to us.

WEEKS: Well, it's - I wish I could explain it, but it is something that happens at dusk, where patients get restless. And it brings out other behaviors, too, not just wandering, but it is believed that that time of day - maybe it's because in the past, the time of day, the routine changes a little bit as we get towards supper time. And that change creates a certain restlessness. And that is when some people disappear.

CONAN: You can also get tired and lose more of those faculties. It varies not just day to day but from hour to hour sometimes.

WEEKS: And there are practical things - reducing liquids at night - and these are things I learned about in my reporting, reducing liquids at night so that people don't get up to go to the bathroom so often and therefore, don't get up to go somewhere else so often.

CONAN: NPR's Linton Weeks wrote "The Mysteries of Dementia-Driven Wandering" for NPR.org. He's with us today here in Studio 3A. You're listening to TALK OF THE NATION from NPR News.

And let's go next to William. William with us from Charlottesville in Virginia.

WILLIAM (Caller): Good day.


WILLIAM: See if you can follow this logic. My mother passed away. She did have Alzheimer's. Shortly before, we had to change all the locks and secure her within the house. She had gotten in her car and put the car in forward, and attempted accidentally to drive through the garage onto which she would have fallen onto a propane tank. She was saved by the framing of the building.

But in an odd way, my family and I, I'm afraid we agreed that - she'd lived three years beyond that point and then - but in an odd way, it would have been best if she could have died without pain. She did not want to live any longer. She was not attempting to commit suicide, but she no longer knew who she was. She was so frustrated. You know, we did not wish her dead. But you know, in a perverse way it would have been better, because she proceeded to live miserably for another two to three years.

It's such a difficult, difficult issue. You cannot wish for people to be put to sleep. But I fear with Alzheimer's, if there were not a pill, with which one could pass away peacefully - it would be ideal, I must say.

WEEKS: That's another recurring motif I hear, actually, is the patient asking for a pill.


WEEKS: And the pill is - again, I didn't get into it, but there's something, there's something primordial about that pill. There is something basic and everlasting about that pill, just like the need to go home.

CONAN: William, also - I assume that there were other people in the building that, if that propane tank had gone up, would have been in danger. So...

WILLIAM: Indeed. I'm being - I am being facetious. The point about the pill is more, more of the issue. And I understand the Supreme Court in that it could never pass such a thing, and poor Dr. Kevorkian, I think that was his goal, was to give us all in this situation some sort of option.

CONAN: That was - situations where those people had some ability to decide for themselves and clearly, your mother was past that.

WILLIAM. Far beyond that.

CONAN: I'm so sorry with what happened. And it's so painful to live with the consequences of that, and it is something again that so many of us are going to face.

WILLIAM: Yes. We were fortunate. It was just another three years. You had the gentleman who said it had been 10 years. I cannot imagine. I cannot imagine living for 10 years with a mother or a father in that state. I feel for any people in that situation.

CONAN: William, thanks very much.

WILLIAM: Thank you.

CONAN: Bye-bye. Here's an email from Diana. I worked for a large nursing home several years ago. We had a resident that had Alzheimer's and unfortunately, he got out and was hit by a car. As the director of nursing, I was mortified about the event and still carry scars from it today. My suggestion is that families should work harder to place their loved ones in a secure environment and not look at their own comfort in respect to where they place them. Had his family listened to - listened - this tragedy would not have occurred.

Well, again, comfort is sometimes not the issue. We can't talk to that individual case. There's a great line in your story, Linton, when you say if you talk to one Alzheimer's patient, you've talk to one Alzheimer's patient. Everybody's different.

WEEKS: Yeah.

CONAN: But it's certainly not always about the family's comfort. It's just sometimes, they're beyond the bend. Let's see if we can go next to Catherine. Catherine with us from Stem in North Carolina.

CATHERINE (Caller): Yes. Hi. I was going to relate the tale of my grandmother, who used to always tell me she wanted to go home just one more time to the old home place (unintelligible) burned so you couldn't take her home. It had burned, though, when she was very young, and she couldn't remember that part.

CONAN: And those memories are so set, those earliest memories, and those,I guess, are the last ones we lose, a lot of the time.

CATHERINE: I think so. And I think everybody wants to go home.

CONAN: Here's an email we got just along the same lines from Randall in Louisville. My grandmother's husband walked away from the personal home - care home where he lived for a decade. He walked six miles or so, and was found frozen to death back on his old farm that he'd owned 50 years earlier.

And Linton, you walked - talked about - well, the truck driver maybe going back to the road, or the farmer heading back to the fields - or wherever home seemed to be.

WEEKS: Yeah. Just a desire to be where you're most comfortable, I guess, or where it all began.

CONAN: Catherine, thank you very much for the phone call, and we're sorry for your experience.

CATHERINE: Yeah. Thanks.

CONAN: So long.


CONAN: NPR's Linton Weeks wrote "The Mysteries of Dementia-Driven Wandering" for NPR.org. Just go to our Web site and look it up if you'd like to read it. He joined us here today in Studio 3A.

Thanks very much, Linton.

WEEKS: Thanks a lot, Neal.

CONAN: This is TALK OF THE NATION from NPR News. I'm Neal Conan in Washington.

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