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A design for the vanishing mind Alzheimer's patients feel at home in the friendly confines of buildings created just for them by Pittsburgh Architect David Hoglund Sunday, April 04, 1999 By Diana Nelson Jones, Post-Gazette Staff Writer
Eight years ago, when he was 35, David Hoglund saw Woodside Place in Oakmont for the first time. He had developed the essence of it in his mind years before. In his architectural blueprints, he sensed its pending eminence.
But it wasn't until he walked through it that he knew his building was on the map of a new frontier. As it turned out, this first of his designs for people with Alzheimer's disease helped change the entire culture of eldercare.
A decade ago, almost by osmosis, Hoglund and a handful of architects, doctors and geriatric specialists around the nation started a movement to put the real meaning of home into "nursing home" and move the "nursing" to the back burner for people whom medicine could not improve. For many people with dementia, of which Alzheimer's is the most common type, 20 years could pass between onset and demise, and the most significant issue of those 20 years would be the quality of day-to-day living.
In the current jargon, the nursing home is the "medical model." By the mid-'80s, it became a subject of such scandal that most nursing homes don't even call themselves nursing homes anymore. In some institutions, patients lay in their own waste. Staffs administered drugs to stifle crying and incessant wandering, Alzheimer's most poignant trait. Some were not infirm or bedridden at all, but the nursing home, as the only option, denied them the outdoors and camaraderie of life. People were living out their days in hospital rooms.
The incidences of abuse may not have been pervasive but were sufficient enough to prompt the Nursing Home Reform Act of 1987. It mandated a new philosophy. It required assessment of patients, their care planned for in writing, and specified hours for staff training. It prohibited strapping people down and plugging them with drugs to keep them quiet. The law even addressed prevention of bed sores.
But short of enforcement, which advocates of the elderly say has indeed fallen short, no reform has been followed as eagerly as the innovations the law did not mandate.
Woodside Place, a nonprofit home for people with dementia, occupies three acres on the Presbyterian Senior Care campus. Woodside borrowed ideas from a group home in England and a large total-care facility near Cleveland. Newer facilities have borrowed from Woodside, tinkering with details, refining. Hoglund himself has changed something with every subsequent design.
"It's always changing because not everything works the same for everyone," he said. "They are all still individuals."
Thirty-six people live at Woodside, 12 in each of three houses that cluster around a common living space. Pictures of Louis Armstrong, Forbes Field and John Wayne hang inside the entrance of one. Each house is color-coded, with pictures. Green decor, complete with quilts showing a tree, signifies the "Tree House." The traditional nurses' station has been replaced by the kitchen table.
In the common area, a man sits in an easy chair, a book on his lap, a pink blanket over his legs. He stares into the pages of a paperback book as "Walkin' My Baby Back Home" bounces quietly from the player-piano. If gas logs could snap, you would hear them.
On a cold and windy day, the only people who would want to walk out these doors have Alzheimer's.
A half-dozen residents, some asleep, sit in chairs that line the main wall, as if at a parade. "We didn't arrange the chairs that way," said Beth Deely, head of Alzheimer's programs for Presbyterian Senior Care and one of Woodside's planners. "They moved them there. They can see everyone coming and going."
And it is a parade. People with Alzheimer's wander, some incessantly. They are prone to wandering into other people's rooms and going through their things. They no longer know that you're not supposed to do that. Theirs is the surreal world of the mind in rewind. The chronic pacing signifies a search for something they will never find.
A woman in sneakers trudges along the indoor path that circles the public area, her head turned to the windows, one hand pressed to her lips. She has worn this path for at least an hour, whimpering softly like a puppy.
Another woman, very tiny in her wool coat, walks toward a door to the outside. "I think I'd better get home now," she says, but stops at the door and looks out. She could open it and wander outside. The outdoor path winds through a garden surrounded by fence and back into the building.
In the new generation of facilities, residents are free to open the refrigerator door when they want to. At the Corrine Dolan Center near Cleveland, a glass-sided refrigerator shows residents the food; they may no longer know a refrigerator's significance.
In many centers now, from Hoglund's several to the national Karrington chain, which has homes in Green Tree and Monroeville, photos or shadow boxes outside resident bedrooms hold mementos that trigger long-term memories: One ex-Marine can find his room because of the medals from World War II on display there.
Each bedroom door in Hoglund's design is a Dutch door. Closed doors can agitate people with dementia. With the top half open, the closed bottom prevents wanderers from meddling in someone else's room.
The freedom to wander is one of the most dramatic symbols of the social-model movement. The innovations build deception into the design - such as hand rails that look like wall trim - as well as removing it: A dark line along a light corridor could be a tightrope for a demented person, a dark tile a hole he could fall into.
Staffs also are trained to play along with the insistences of people in their care.
At Karrington in Green Tree, marketing director Jana Faisant said one of the most heartbreaking aspects of Alzheimer's is the crisis it presents a family that cannot let go of the mother they knew.
"They want their loved one to know what day it is. And they look at me funny if I acknowledge that their mom is sitting on the couch thinking she is waiting for a bus to Swissvale, because she thinks she is. So I sit down and talk to her about Swissvale."
Of 40 kinds of dementia, Alzheimer's affects one in 10 people at age 65 and half of all people over 85. Dementia gradually destroys a person's brain, and medical care cannot stop it.
"Medical treatment is not the main issue for most of these folks," said Bill Thomas, a former emergency room doctor in upstate New York. After suffering burnout in 1991, he took a nursing home job, thinking "How big a deal can it be to be a doctor in a nursing home? I thought it would be a rest. I found instead it was fascinating."
Within a few years, he had established his own philosophy and called it the Eden Alternative, bringing in thousands of plants, birds, dogs, cats, rabbits, and children for day care. "Though we had the same old stodgy bricks and mortar, we were able to make a living environment out of it." Three-fourths of the residents had dementia, he said.
"I'm a doctor, not a designer, but the bulk of my work is helping people improve and enliven their environment. Taking care of their spirit is the ultimate treatment - nourishing and enriching their spirit. They were living in environments that crushed them: Who ever would want to live in a hospital?"
David Martin, a professor of medicine at Pitt and Woodside's medical consultant, said the social level of care does provide more than a palliative effect: "We are learning that even though these diseases are degenerative and progressive, there is plasticity. That's the body's ability to regenerate or fight degeneration, and it's very possible that having someone in a more stimulated environment would slow the rate of decline. That has not been well studied. But one study has shown a better preservation of gait among people at Woodside."
Even more hopeful, he said, is that someday, these special-care units may go the way of the Sister Kenny Institutes for treatment of polio. Sister Kenny challenged the prevailing view of doctors who forced bed rest on children with polio. She believed in massage therapy, warm sponge baths and exercise. "She happened to be right," Martin said. "And once polio was curable, the institutes went out of existence.
"I'm confident medical science will solve the riddle of dementia, and like any disease it will be treatable and preventable."
Woodside was three years in the making. In 1988, the Western Pennsylvania Hospital, Presbyterian Senior Care and the Heinz Endowments together invested in the project. A study group that included Hoglund investigated the possibilities of a different kind of housing for people with Alzheimer's.
One of the places Hoglund visited was the Corrine Dolan Center near Cleveland. It is a dementia-specific program in the Heather Hill Hospital Health and Care Center.
Its CEO, Robert Harr, said the pioneers of the new-generation programs have all put emphasis on eliminating the anxiety and stresses that come with being lost in both space and time.
In the old nursing home, a long corridor under fluorescent lights might look like ice and terrify a person with dementia who has to walk down it. A voice over the intercom, to someone who no longer knows the concept, hears a disembodied voice. A white wastebasket is as good a target to a man with Alzheimer's as the white toilet bowl right beside it.
Harr said the most obvious needs are not always obvious to us, such as to put the toilet in view of the bed. When that was done at the Dolan Center, the staff had a more than 50 percent drop in incidence of cleaning people who had fouled themselves. Another simple solution was designing closets so the first thing you see is the first thing you put on.
Dyke Turner, a Seattle architect, has retrofitted a 70-year-old nursing home there, Providence Mount St. Vincent, from long corridors with rooms on each side to "neighborhoods" where food is not delivered on trays but prepared in the residents' kitchens.
In a former lock-down unit for Alzheimer's, before renovations, "there was a lot of disruption and anxiety, confrontations, meddling in other people's rooms," he said. "When we changed things, even adding carpet, and adding some meaningful choices of places for people to go into, there was more socialization between residents, and the agitation levels went way down. Even if you can provide perceived opportunities, you have given people some participation in their own care, and that's a tremendous gift."
In planning Woodside, "we questioned every assumption down to the faucets," says Hoglund. "For instance, red and blue means something [hot and cold] to older people. Old porcelain sinks had those designations."
And still there were mishaps: A resident who had once been a hunter walked up to a potted tree in the living room at Woodside and urinated in it.
The movement away from medical-model nursing homes has changed more than the culture; it has changed the way regulations apply. Elma Holder, founder of the National Citizens Coalition for Nursing Home Reform, said the reform laws don't cover the social model. She said assisted-living may in some cases be a euphemism for a home that doesn't have to follow the laws. The laws derived from abuses on the medical model.
"There is debate over whether assisted living should be regulated," she said.
In spite of some people's belief that these comfy, homey new-generation homes are more expensive, they are not, said Bill Keane, chairman of the state's Public Welfare Advisory Committee. They are less expensive than nursing homes, but because Medicaid does not pay for social-model homes, they have been accused of being a rich-person's alternative. Unless a facility is not-for-profit and accepts a portion of residents based on financial need, the only option for someone on Medicaid is a nursing home.
"And I'm not sure that the billions we are spending under medicaid in nursing homes is being efficiently spent," Keane said. "The payment is not following the person and their need."
The medical model is more costly to operate because the nursing-home industry is "the most regulated industry after the nuclear industry," said Keane. Regulations are were pretty weighty in 1964, he said, became moreso in 1987.
By contrast, a building like Woodside didn't have to meet standards such as 8-foot-wide hallways, which allowed the wheeling of beds. Personal-care homes do not have full-time doctors or nurses on duty, and staffs are not medically trained, so they don't earn as much. Staff ratios, too, can be decreased where residents are less dependent.
But the next trend will be to integrate the medical and social models so that nursing care can exist in a place that feels right to families, said Hoglund.
Since Woodside, the dementia-specific sites of Perkins Eastman Architects include Asbury Place in Mt. Lebanon, Cooper Ridge in Sykesville, Md., the Marjorie Doyle Rockwell Center in Cohoes, N.Y., and two Woodside clones in Canada. Hoglund also has adapted existing homes, with renovations to Weinberg Village for the Jewish Association on Aging in Squirrel Hill and some 25 other sites around the country.
Now 43, Hoglund is the principal at Perkins Eastman Architects, Downtown. He was working for the firm in New York, its headquarters, when he designed Woodside Place; thereafter, the firm created a Pittsburgh branch that now staffs 55.
"Woodside Place was a marker for me. It brought together my personal philosophy and my professional interest. I didn't realize during the work of it how special it was, because we struggled. We were stepping out there doing something that had not been done."
Hoglund has become a frequent conference speaker on designing for dementia, but he has designed housing for a great range of people who are trapped: an AIDS hospice, homes for emotionally disturbed children, disabled veterans and drug-treatment programs.
The oldest of four, Hoglund is a lanky native of a rootless childhood. General Electric transferred his father to a different place in each of his first 13 years. By first grade, Hoglund says he knew he wanted a career designing permanent homes. As a teen-ager, he knew he wanted to build for people who needed his designs, the way an amputee needs a prosthesis.
"I guess it was in high school I discovered I liked to talk about buildings and how they affect people. My interest was to design for people who are trapped in some way, to help them make the next step. I think there was a divine finger in my back."
He studied architecture at the University of Illinois and, on a National Endowment for the Arts grant and university fellowship, visited group homes in Scandinavia and England. He returned with a mind full of images of an eldercare culture of small-scale, real home living, with terraces and landscaping and windows that made the outdoors relevant.
By his graduate school thesis on housing for the disabled, classmates assumed he had a disabled relative. They didn't see the wealth of possibilities he did: "You have to do more with design, and you've got to push. Thank goodness I had clients who wanted to come with me on this."
Elizabeth Brawley of San Francisco, a member of the board of the National Alzheimer's Association and author of "Designing for Alzheimer's: Strategies for Creating Better Care Environments," said Hoglund's influence has been tremendous. "I used his designs in research for my own book."
When placing her own mother in a home for Alzheimer's in the '80s, she said, "I started looking at issues beyond aesthetics and realized there was an immense amount we could do to support aging through design of buildings."
Sarah Burger, executive director of the National Citizens Coalition for Nursing Home Reform, said design issues "can make or break one's quality of life." The culture change in eldercare has given people "a reason to get out of bed. There's an exchange of air inside and out. They are putting resources at the residence level instead of a hierarchy with someone at the top who doesn't even know who the resident is."
In the long run, though, "it's a different level of care from the nursing home, and these people will eventually need nursing home care."
But Bill Thomas, of the Eden Alternative, believes even the last days can be accommodated in a social model. "And I'm saying that to you as a board-certified geriatrician and medical doctor.
"Baby boomers are not going to put up with a nursing home, even at the end. They had their babies more naturally. They want to die more naturally."
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