Camp For Alzheimer's Patients Isn't About Memories An unusual sleepover camp brings together about 20 people who have dementia for a weekend of music, dance, reminiscing and other activities that emphasize strengths instead of losses. While the campers typically won't remember details of the retreat, it lifts their mood, camp staffers say.
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Camp For Alzheimer's Patients Isn't About Memories

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Camp For Alzheimer's Patients Isn't About Memories

Camp For Alzheimer's Patients Isn't About Memories

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It's MORNING EDITION, from NPR News. Good morning. I'm Steve Inskeep.

Today in Your Health, finding new ways to live with dementia. About five million Americans have Alzheimer's disease, and two-thirds of them are living with family members. There's no cure, but experts do have some tips for making the illness easier on everyone. Science reporter Deborah Franklin has the story.

Ms. SAMARA HOWARD: How are you doing? Did you have a good time?

DEBORAH FRANKLIN: It's a Sunday summer afternoon at a woodsy conference center outside San Francisco. Samara Howard has come to pick up her 83-year-old mother from camp. She's relieved to find her mom relaxing in the sunny dining hall, enjoying lunch.

Ms. HOWARD: I heard you were quite social.


(Soundbite of laughter)

Ms. HOWARD: You were. Yes. I'm getting good reports on you.

Ms. JENNINGS: You know I'm a good girl.

FRANKLIN: Howard dropped her mom off here two days ago, Friday afternoon.

Ms. HOWARD: First time she's been away from me in seven years.

FRANKLIN: She quit her job to become her mother's full-time caregiver, day and night.

Ms. HOWARD: So, first time I had 24 hours to myself, because normally, I only sleep like, maybe, two hours a night because she's up and she wanders and she turns on the stove, and she does stuff like that.

FRANKLIN: It's exhausting and unrelenting. You hear that a lot from these families. Confusion and agitation are common in Alzheimer's, and usually any break in the daily routine only increases that reaction. But not so much at this weekend sleepover camp for people with dementia.

Unidentified Group: Bonjour.

(Soundbite of laughter)

FRANKLIN: Caitlin Morgan is the gerontologist and social worker who directs these unusual camps. They're held a few times a year by the nonprofit Family Caregiver Alliance.

Ms. CAITLIN MORGAN (Gerontologist): Many people who are here will not remember what we did earlier today. But by the end of this retreat, they're going to say: Whatever we did, it feels like something good has happened here.

FRANKLIN: And surveys of families indicate that good feeling lingers.

Experts have learned in recent years that by tapping into emotion, it's often possible to tunnel through that mental fog of dementia and engage people who are pulling into themselves. They recommend techniques like music, touch, reminiscing and validation, emphasizing strengths instead of losses.

Ms. MORGAN: So just because we get a diagnosis of Alzheimer's or other conditions doesn't mean that our lives are over, does it? How many people are still ready to live life?

Unidentified Woman: I am.

Ms. MORGAN: A full life? Yeah, here come the hands. Indeed.

FRANKLIN: At the beginning of the camp weekend, Morgan helps the 17 campers introduce themselves, including´┐ŻEmmorry Jackson. He's a tall, handsome man, 87 years old with a twinkle in his eye and spit-polished shoes. The brief bio that his wife sent along says he's always loved tinkering.

Ms. MORGAN: Is it true that you worked for the Naval Air for a few years, and you really enjoyed that?


Ms. MORGAN: What was your favorite part of doing that?

Mr. JACKSON: I don't know. I don't know. I can - man, it's been so long, man, I can't - but I did so much metal stuff.

Ms. MORGAN: Metal stuff.

Mr. JACKSON: I thought I run the Navy for a while.

Ms. MORGAN: I wish you had.

FRANKLIN: Caitlin Morgan turns next to Jimmy Johnson, 92 and wiry with a sly smile. He was head waiter for many decades at a posh restaurant in Hollywood, and he still knows how to work a room.

Mr. JIMMY JOHNSON: (Singing) I love you for sentimental reasons. I hope you do believe me. I've given you my heart.

(Soundbite of applause)

Ms. MORGAN: So, Jimmy, can you tell us a little bit about your own memory loss? Is it easier to tell people, hey, I've got a little memory loss, don't worry about it?

Mr. JOHNSON: I had a memory loss? I don't remember.

Ms. MORGAN: Well...

(Soundbite of laughter)

Ms. MORGAN: Good one.

FRANKLIN: The lightness of this place is a far cry from the nursing homes that Morgan used to visit with her college theater group in the 1970s.

Ms. MORGAN: I saw people being warehoused. They would bring people out of their rooms, and people seemed totally engaged when they would see us. And then they would take them back to these rather grim circumstances and stuck in front of a television set or in a room with a bunch of other people sitting around nodding off with nothing else to do.

FRANKLIN: Even today, a lot of people with dementia don't get the social interaction and stimulation they need. Morgan says activities don't have to be complicated to be meaningful. She's had campers who enjoyed watering the camp garden or wiping off tables after lunch.

Ms. MORGAN: I'll hear caregivers say: Oh, you know, I just washed the dishes, and he took them all out of the cabinet and wants to wash them again. And I ask: What's wrong with that? Obviously, he wants to be useful.

FRANKLIN: Often, she says, it's the caregivers' perspective that needs to change. Dementia experts now advise that if your grandmother believes she's eight years old and late for school, don't correct her. Fib if you have to -today's a school holiday - or distract her. Ask about her favorite teacher. Most important: listen between the lines.

Ms. MORGAN: If you validate where they're coming from and truly listen, you're going to find a lot of truth and you're going to find a lot of sense in the middle of it.

FRANKLIN: Still, that's not always easy. At dinner the last night, Emmorry Jackson, that tall, sweet-tempered man who loves to tinker, suddenly gets up, convinced that the back of a chair across the room is broken. He walks over and kneels way down to fix it. At first, the staff tries to distract him.

Mr. JACKSON: No, no, no, no.

Ms. MORGAN: Maybe we could fix it when somebody's not sitting in it.

Mr. JACKSON: You cannot fix it. I'm fixing it. I'm doing (unintelligible) of work on it. That's why you've got to leave in.

Ms. MORGAN: Okay. Okay. Okay.

FRANKLIN: Caitlin Morgan doesn't try to stop him. For the next 30 minutes or so, Jackson's a carpenter again, splayed out on the floor, working on that chair leg with tools that only he can see.

Another staffer walks up.

Unidentified Woman: Is it almost done, the job?

Mr. JACKSON: Don't hold nothing. Do try to move anything.

Unidentified Woman: Okay. Okay. I won't. I won't move anything.

FRANKLIN: Morgan opens a side door so the other campers can get to the evening music program. And then she just waits for Emmorry.

Ms. MORGAN: He's now down on the floor. We could move this table over and move that chair. People could step over him pretty easily. But right now, he's just engaging in something that interests him. So I'm not going to discourage him at this point. We'll redirect him, but I want him to have whatever full experience he's having.

FRANKLIN: It's easy to see why Alzheimer's is such an exhausting and isolating illness for any family.

By Sunday morning though, Emmorry Jackson is relaxed and happy.

Mr. JACKSON: Yeah, I feel pretty good right now.

FRANKLIN: Being allowed to be himself has paid off for him. And he's delighted to see his wife, Artra(ph), when she comes to pick him up.


(Soundbite of laughter)

Ms. JACKSON: He enjoyed himself?

Ms. MORGAN: He did.

Ms. JACKSON: Oh, good.

Mr. JACKSON: Yeah. I had a lot of fun.

Ms. JACKSON: Oh, wonderful. Wonderful.

Ms. MORGAN: He sure did.

FRANKLIN: Artra Jackson got the weekend break she needed and is trilled that her husband thrived, too, even without her tender attention. Caitlin Morgan says she hears that a lot.

Ms. MORGAN: I have caregivers routinely after camp that call me in tears saying, you've just opened a door for me. I know I need to think about maybe sending my loved one to a day program.

FRANKLIN: With bags packed up, Emmorry and Artra Jackson slowly head to the car arm-in-arm.

Mr. JACKSON: Yeah, I had a lot of fun when I was around here.

Ms. JACKSON: Good. Good.

Mr. JACKSON: I learned - a lot of them know me. What's this right here (unintelligible)?

Ms. JACKSON: No. No. No. No. Uh-uh.

FRANKLIN: As a staff member helps Emmorry into the car, Artra Jackson admits that handling her husband at home can be tough.

Ms. JACKSON: I've had my experience with taking him to the store with me.

(Soundbite of laughter)

FRANKLIN: How'd that go?

Ms. JACKSON: Not very well. Not very well. So, he's easily agitated.

FRANKLIN: Is that right?

Ms. JACKSON: Mm-hmm.

FRANKLIN: So how do you deal with that when you're working with him?

Ms. JACKSON: Well, I just think, be quiet. Let him...

Mr. JACKSON: You in?

Ms. JACKSON: ...go ahead and do what he's got to do. Then when he gets through ranting and raving, then he's still got to do what he's got to do.

FRANKLIN: And that's just what the experts advise. It says a lot about what partnership can mean in a long marriage, and all the ways you have to improvise to share a life with someone who has Alzheimer's.

Mr. JOHNSON: (Humming)

FRANKLIN: You have to find a way to let go of the person who's gone, but wait and watch and connect with the love that's still there.

Mr. JOHNSON: (Singing) In other words, hold my hand. In other words, darling, kiss me.

(Soundbite of song, "Fly Me to the Moon")

Mr. NAT KING COLE (Singer): (Singing) Darling, kiss me.

FRANKLIN: For NPR News, I'm Deborah Franklin.

(Soundbite of song, "Fly Me to the Moon")

Mr. COLE: (Singing) Fill my heart with song, and let me sing forever more. You are all I long for...

INSKEEP: For more tips on caring for someone with dementia, please check out our website:

(Soundbite of song, "Fly Me to the Moon")

Mr. COLE: (Singing) In other words, please be true. In other words...


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