Creative Caring

ESCONDIDO, Calif. —  The man looks up with a pleasant smile. A gentleman, he gestures toward a vacant seat at his dining table.

His name is Art Johnson. He used to be a sales manager for Coca-Cola, with more than 50 people answering to him. He was a pilot during the Second World War, when he flew transport missions in China. He wasn’t a bad golfer either--won a few trophies, in fact, though he’d rather not boast.

He volunteers amiably that he’s been here, in this place, for five years. He loves it. His wife comes to see him about once a week, as his flying schedule permits.

“He must have meant his daughter,” a nurse explains later. His wife died years ago. He’s been at the Silverado Senior Living facility about six months. His flying days, like his golf tournaments, are memories, much more easily retrieved than what happened yesterday.

Johnson, 83, is in the mid-stages of Alzheimer’s disease. He’s got high color in his cheeks, a social nature and no apparent infirmities besides a brain that confuses past and present, and a body that likes to roam.

He’s come to the right place. Silverado has a few acres of “wandering paths,” with expansive views of Escondido and neatly kept gardens, surrounded by an attractive--but seemingly impassable--gate. On these grounds, Johnson, who wandered away from his last placement three times in three days (in search of a martini to wet his whistle), is pretty much free to come and go as he pleases. The staff keeps watch.

He takes full advantage. “I think I’ll shuffle off to Buffalo,” he announces after a luncheon chat, politely dabbing his lips with a napkin and heading out the door.

This is as close to hearth and home as Johnson and his fellow residents--all 56 of them, most with Alzheimer’s--are likely to get again. And it is, according to many familiar with Alzheimer’s services, all too rare a place.

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Though committed to caring for patients until the end of their lives, Silverado is not a skilled nursing home, that often-dreaded last stop for elderly patients who have outlived or overtaxed friends and family. Nor is it a standard board-and-care. It is a locked “assisted living” facility, geared to a growing middle range of dementia patients who need close attention but who aren’t necessarily incapacitated or incapable of mental engagement.

The approach is still relatively uncommon; the state licenses only about a dozen locked dementia care facilities such as this.

With free-roaming pets, mind-massaging music and current events courses, diversionary gadgets on the walls, gardens and a steady flow of guests, Silverado aims to keep its residents occupied--happy, even.

The intent, says administrator Stephen Winner, is to leave patients some “dignity of risk” by balancing freedom with protection, and choice with limits.

“We may have to lock a front door, but we try to open up as much experience as we can,” says Winner, who conceived the program based on years of experience in homes for elderly, developmentally disabled and mentally ill patients.

Silverado represents the beginning of an evolution in thinking about Alzheimer’s, from a focus on the early and late stages of the disease to the quality of patients’ lives in between. With 4.5 million people afflicted now and as many as 14 million expected in the next quarter-century, researchers say, the country can no longer afford to ignore the long and winding middle stretches of dementia. Patients live an average of seven years after diagnosis, but can hang on for as long as two decades.

“It used to be, we were either worried about the nursing home or the diagnosis,” says University of Washington psychologist Linda Teri, who trains caregivers for Alzheimer’s patients.

“I think we’re getting better at recognizing [Alzheimer’s] as a chronic, debilitating condition. We have to understand the course of the disease and intervene across that course.”

That means offering a spectrum of choices to patients and their families, including in-home care, day care, assisted living (also known as residential care) and, when necessary, skilled nursing, experts say.

“Alzheimer’s disease is a progressive disorder, and to respond comprehensively, we need a continuum of care,” says Dr. Jeffrey Cummings, director of the UCLA Alzheimer’s Disease Center. “Assisted living plays an important role. But up to now, there has been very little emphasis on assisted living and practically no research on how to . . . maximize the lives of residents.”

Assisted-living facilities may, like Silverado, offer medical care on site, but they are not bound by the strict regulations governing nursing homes. Winner says that this frees these homes to be more flexible, to gear medical and staffing levels to individual patient needs and to operate at lower costs than nursing homes. The homes are, however, monitored by government agencies. In California, it’s the state Department of Social Services, which inspects them at least once a year.

There are risks and drawbacks. Quality of care very much depends on the commitment of the leadership and the staff, since the regulations are less rigorous. And assisted living is not covered by Medicaid (Medi-Cal in California), so it remains inaccessible to most patients who cannot afford to pay out of pocket. In many cases, long-term-care policies won’t cover it either, although 12 patients are covered at Silverado. The facility charges $96 a day for a shared room, compared with about $110 for a shared room at a nursing home.

Winner and Loren Shook, Silverado’s president and chief executive, say they are hoping to create a new model: homey environments with country kitchens in place of nurses’ stations, dining rooms instead of cafeterias, live-in pets rather than weekly “pet therapy.”

They say they can minimize medications by offering stimulation, distraction and reassurance. And they take patients that other residential care homes reject, those with behavioral problems such as food-throwing and medical complications such as diabetes or incontinence.

Maybe it’s the fancy set-up, but no one throws food in the dining room, Winner says. For the most part, he says, residents mind their manners--one of people’s most ingrained memories, readily invoked by the right cues.

Otherwise, unconventional behavior is well tolerated, as long as it’s safe. That explains the stack of framed pictures leaning against a wall. Occasionally residents like to take them down and cart them around; if they aren’t hurting themselves or anyone else, the staff doesn’t intervene. They can put them back up later.

“Some folks are obviously [interior] decorators,” Winner says, smiling. “It’s really OK; there is no crisis.”

The laid-back approach extends to the four dogs, which wander through the hallways pretty much at will. Winner says the pets bring people to life like nothing else.

“Dinah!” one nonagenarian bellows after a huge, fluffy black dog who moved into the home with her. “Dinah!!! Have you seen my dog?”

Informed that her dog seems to adore her, she counters wryly: “Well, I love her. I don’t know if it’s returned or not.”

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Silverado is part care and treatment, part experiment. Medical care is provided on site by a “house doctor” who visits once a month and by an around-the-clock nursing staff led by an experienced registered nurse.

Researchers at UC San Diego are keeping an eye on the place, as well. How is it that musical functions seemingly are preserved in the disease process, so that a man who has lost the ability to communicate can still play holiday tunes on the piano? How do you get a night-owl patient back on a daily schedule? Why do patients with Alzheimer’s lose weight?

“We are looking at Silverado as sort of a specialized laboratory” to help answer some of these questions, says Dr. J. Edward Jackson, a professor of medicine at UCSD and medical director at Silverado.

Some of the facility’s funkier features are less products of the scientific method than of long experience and good guesswork.

Take the bean wheel. It’s a see-through contraption attached to the walls, filled with colored beans. When it’s turned, the falling beans command attention, like a kaleidoscope. Any staff member can turn it to distract a patient from undesirable activity, such as picking the paint off the walls. Telephone receivers that blare music into the listener’s ear function as audio distraction tools.

Then there are the memory boxes. These glass-covered containers are mounted outside the rooms of some of the most forgetful residents, serving as stirring reminders of earlier, often better, times. Military photos, gifts from grandkids, news clippings--they reinforce residents’ identities--and, not coincidentally, signal which room is theirs.

None of this is curative; mostly it is kind. And that, advocates for patients say, is important.

“These are human beings,” says Joy Glenner, a fan of Silverado’s and co-founder, with her late husband, George, of the nation’s first Alzheimer’s day-care center in San Diego. “There still could be quality of life for them. They have feelings, they have hearts and souls. We don’t have a throwaway society. We can still give them meaningful days.”

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For families, places like Silverado offer a sort of emotional salve.

Elliott Murphy tried to keep her husband, Cecil, now 78, at home, but had to find somewhere else for him when his sweet nature temporarily soured. He twisted her arm, breaking some of her blood vessels. She looked at seven other places before settling on Silverado, impressed by the menagerie--four dogs, four cats, 35 caged birds and assorted aquariums--by the personal attention and by the pleasant grounds. Her husband used to love the outdoors.

“They painted his room for me,” says Murphy, who visits her husband each day for lunch (free to family members).

“I furnished it myself. It looks more like a home. I keep [room deodorizers] in the room so it stays fresh. I even got in bed with him one night and sang him to sleep.”

She added later, through tears, “He still hugs me and kisses me even though he doesn’t know my name.”

Placing an Alzheimer’s patient outside the home is never easy, not at Silverado and not anywhere else. Relatives often put it off until a crisis forces their hand. For many, the guilt never goes away. But Winner, the administrator, says Silverado tries to help by offering support sessions for family members and wide-open visiting hours.

“They let me eat, too!” says Frances Titelli, busy cutting her husband, Richard’s, corned beef. She took him out of a home in Oklahoma to come here, at the urging of her son. After 52 years of marriage, Richard deserved better, Frances says.

“He was so good-looking,” she says, pulling a 1940s photo of the two of them from her wallet to prove it. “I was afraid he wouldn’t stay with me.”

Richard looked up from his plate and grinned her way.

“He’s been a good man,” she says, touching his hand.