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Many faces of Alzheimer's.

Byline: Karen McCowan The Register-Guard

There's good reason why Alzheimer's disease has overtaken cancer as the most-dreaded diagnosis among Americans age 55 or older.

The memory-robbing brain disease afflicts 10 percent of people living beyond age 65. The rate approaches 50 percent among those older than 85. By 2050, aging baby boomers are expected to quadruple the number of Americans with Alzheimer's, to 16 million people.

But a new book by Eugene writer Lauren Kessler may take some of the terror out of that prospect.

"Dancing with Rose," which has captured national attention, depicts many people with the disease as continuing to enjoy ordinary pleasures in the present despite losing access to their pasts.

That's not what Kessler expected to find when she took a job as a caregiver at a Eugene "memory care" facility to better understand Alzheimer's. The University of Oregon journalism professor, who directs the UO's graduate program in literary nonfiction, was researching a book on the subject. But her interest was more than academic. She'd yet to come to terms with her own mother's 1996 death from the disease, which she'd come to regard as "unremittingly bleak."

She'd even developed her own grim, unofficial staging of Alzheimer's:

Stage I: I forgot what I bought at the store for dinner.

Stage II: I forgot how to cook dinner.

Stage III: I forgot how to eat dinner.

While caring for other people with the disease, however, Kessler discovered something which buoyed her.

"The 'Aha!' moment of the book is that there is real life being lived by people who have this disease," she said in a recent interview. "It's very easy to miss this when it's your relative because - and this is what happened with me - all you can see is what's not there."

While feeding, cleaning and "toileting" residents with advanced Alzheimer's, however, Kessler was struck by what remained.

"Being part of their lives for eight hours a day, I was able to see their personalities, their daily routines, their friendships, their romantic entanglements, how they reacted to animals - the whole vibrancy of a life being lived," she said.

Animals, from birds to "a potty-trained llama," were regular features at "Maplewood," the name Kessler gives the undisclosed Eugene care center where she spent more than four months pulling eight-hour shifts alongside other low-paid resident assistants. She uses pseudonyms for the center's residents, as well. She took both steps to protect the privacy of the residents she profiles, because their dementia prevented them from providing informed consent to being profiled.

The book provides a vivid overview of daily life in a care center designed to provide both socialization and safety for those with dementia. Its four "neighborhoods" all open onto a contained, outdoor courtyard. Each neighborhood has a shared kitchen and gathering area, surrounded by residents' rooms. The use of anxiety medications is low, Kessler said during a tour this week, because residents can wander without "feeling like every door they try is locked."

It's a book about the mostly poor, mostly female workers who make places such as Maplewood possible. Kessler writes with warmth about her mostly under-educated colleagues who endure terrible hours and low wages to perform this emotionally and physically demanding work. She makes clear why the caregiver turnover rate is so high that her four-plus months at Maplewood represented the longest tenure among the five resident assistants at her new-employee orientation. But she also makes clear how much these workers care about their sometimes demanding, exasperating clients. She notes, for example, that three of her fellow "RA's" showed up, unpaid, on their day off, to attend the funeral of a resident who died at Maplewood.

It's a book about the impact of the disease on family members.

"I think the disease is much harder on the families than on the people with Alzheimer's because - and I'm completely guilty of this myself - the whole thing becomes about you and what you've lost," she said.

That's part of the reason she became convinced that "a good Alzheimer's facility is probably better than most home care."

As a caregiver with "no emotional baggage" regarding the Maplewood residents she tended, she was able to accept - even admire - their resiliency in constructing a new sense of self that allows them to cope with their only-in-the-present lives. One resident, for example, is a former university administrator who views Maplewood as a retreat center for female executives - one where she has "an open-ended sort of position" as a manager.

Most of all, the book shines a welcome light on the humanity that transcends the disease.

Even the most severely demented, Kessler reports, still had distinct personalities, likes and dislikes, and "experienced things with intensity."

"You could see them fall into beautiful music and appreciate it like any other person," she said.

The book's title, in fact, is inspired by an eye-opening moment Kessler shared with "Rose," whom she'd previously known only as a shuffling, vacant-eyed wanderer. At the suggestion of another RA, Kessler asks Rose to dance after seeing her tap her foot to a Maplewood showing of the movie "My Fair Lady."

"She is - astonishingly - graceful as we start to waltz," Kessler writes. "I am not so graceful. I keep count in my head. ... Rose is a good dancer. I stop counting to myself. I close my eyes and let her lead."

The Chicago Tribune praised the book as "profound," The Los Angeles Times said it "turns our assumptions on their heads" and "O" magazine published a 5,000-word excerpt in June. It's also winning raves closer to home, from those who know its subject well.

"It's a tremendous book," said Frank Hales, executive director of the Cascade Coast chapter of the Alzheimer's Association. "In fact, Lauren will be the guest speaker at our Excellence in Alzheimer's Caregiving awards dessert Sept. 28."
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Title Annotation:General News; A UO professor redefines living in a journey into dying patients' worlds
Publication:The Register-Guard (Eugene, OR)
Date:Aug 3, 2007
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