Dignity: the keystone of Alzheimer's care.

Ensuring confidence and peace of mind were particular concerns for the Whitehall Boca Raton nursing facility in its approach to residents with Alzheimer's disease and related dementias.

"Managing the manifestations of dementia is one of the most difficult tasks we face in the geriatric field today," explains Steve Mulder, administrator and owner of the 144-bed facility in Boca Raton, Florida. "At Whitehall, we want a restraint-free environment. Yet people with dementia display ever-changing, increasingly deteriorating symptoms requiring the utmost professional sensitivity.

"In the past, before Alzheimer's disease was identified and understood as a specific complex of symptoms, individuals with dementia were treated as sickroom patients. They were mainstreamed in with the general nursing home population, and were typically restrained chemically or physically, and more or less confined to their rooms, shut away from any semblance of their former everyday lives.

"Today most nursing home professionals know better, but at Whitehall, we've gone to extra lengths to provide an enlightened care plan. Our aim is to safeguard residents' personal dignity."

Whitehall uses a program model called Comfort Care. "We began using the Comfort Care approach in 1991," says Mulder, "and we have seen significant differences in our dementia and Alzheimer's residents. They are more alert and evidence greater competencies in self-care than was formerly expected."

Comfort Care transitions away from a medical approach to a palliative or hospitality model of care. It is structured interdisciplinary program with total staff involvement, from nursing to dietary therapy and more. It is based on the assumption that if residents' needs are addressed, they will be more comfortable and less agitated. And it worked so well in Whitehall Boca Raton that the program has also been adopted by the three Whitehall facilities in Illinois.

The Comfort Care model was developed by Mary Lucero, a licensed nursing home administrator in the state of Florida. Mrs. Lucero had been administrator of the Cathedral Geronotology Center in Jacksonville, Florida, which consisted of an outpatient geriatric clinic and a 120-bed nursing home. She was one of the first administrators in the state of Florida to operate a nursing home under a "no restraint" policy.

In 1987 she founded an independent company, Geriatric Resources, Inc., to further develop staff intervention resources to effectively manage the dementia patient. Geriatric Resources also develops and markets sensory stimulation products for the Alzheimer's type dementia sufferer, and provides nationwide consulting services to institutions, organizations and healthcare professionals.

In 1989 Mrs. Lucero received a National Institute of Aging (NIA) Small Business Innovation Research grant to continue her work -- the first NIA grant of its type.

When Steve Mulder learned about Mrs. Lucero's work, he believed its methodology was consistent with Whitehall's philosophy of ensuring individual dignity.

"To understand why Whitehall was especially keen to adopt this approach, you need to know how Whitehall evolved," Mulder says.

The Whitehall story began in Chicago in the 1950's. In the course of his frequent visits as a funeral director, Steve Mulder's father, Paul, observed many area nursing homes. He envisioned an alternative to the traditional institutional approach. In 1955, he built the first Whitehall, a facility designed as a "home away from home" with the amenities and ambience of a fine residential hotel. Key ingredients were respect for individual dignity and maintaining the same level of comfort which residents had known in their own homes.

On the heels of his first success, Paul Mulder designed and built three other Whitehalls in the Greater Chicago area, and earned an industry-wide reputation for setting and achieving high standards.

In 1982, Steve Mulder, who had been an administrator at Whitehall North in Deerfield, Illinois, created the first Florida Whitehall, in Boca Raton, and has since been a close observer of nursing home trends.

"Over the last 10 years we've been noticing a changing profile of our nursing home population," Mulder says. "White a majority of our residents are still those with medical or surgical complications, and increasingly larger proportion have cognitive impairments, with diagnosed Alzheimer's disease or dementias. Their manifestations are too difficult for home care, yet their families deal with a great deal of guilt about taking them out of the home and confining them to a 'sickroom' environment in an institution.

"That's where Comfort Care is radically different," says Mulder. "The program defines a new 'home' for these individuals. It establishes a self-contained 'safe' area, consistent staffing and a repetitive daily routine to help provide stability for their shifting, unstable psyches."

At Whitehall, the Comfort Care unit occupies the separate Hampton wing. There are 14 full-time residents and from two to five day-care participants, residents of other Whitehall wings. The unit's head nurse is Ann L. Owens, LPN. Ann and Bernice Cook, a Certified Nursing Assistant, have been working in tandem on the seven-to-three day shift since the unit's inception in April 1991. Along with two other daytime assistants and equally attentive nighttime staff, they have become the residents' de facto families.

Bernice, who has been at Whitehall for 10 years, calls these residents "my people," and adds, "I put myself in their place. They need love and care. I think for them. I look into their eyes and imagine what they want."

Ann, whose own mother had Alzheimer's disease for seven years, says, "We tend to their needs as we would with children, making sure they are physically comfortable and feel secure. They are close to my heart. We all enjoy them. You have to be a special person to work in a unit like this. You have to find the humor in the disease. We enjoy the cute things they say. They're adorable."

Says Mulder, "It is staff like this, truly dedicated individuals, who make the program a success both for residents and their families."

The Whitehall philosophy addresses the needs of the entire family, from the initial interview onward throughout the entire term of residency. Individualized attention is focused on every aspect of the resident's daily living needs so as to encourage the greatest degree of dignity and independence. Personal care programs take into account medical needs, physical limitations and mobility, mental competency, psychological stability and social skills.

Comfort care supports the individual's existing capabilities while compensating for the loss of other abilities, with a program of "dementia-capable" activities. The model is a low-stress environment: the resident is regarded as the "customer," and "the customer is always right."

While there is a structured daily routine, the staff remains flexible to accommodate individual needs and changing behaviors.

"You have to go with the flow," says Ann. "A resident's shower can take ten minutes or forty-five minutes. You can't be rigid. We don't force the residents to do anything they don't want to. We wait until they're ready.

"One resident sometimes wouldn't get dressed till three o'clock in the afternoon. We try to have all residents dressed in street clothes at Whitehall, but if someone has other ideas, we respect his or her privacy."

Grooming is an important part of the Whitehall attention to individual dignity. "Naturally, there are some residents who are incontinent," Ann says. "But no one is ever wet or unclean. We bathe and dress them in street clothes daily, making sure the men are shaved and have neat haircuts. We apply light cosmetics to the women every day and we take them to the Whitehall beauty salon to have their hair and nails done regularly."

In what is perhaps the most remarkable aspect of the program, the residents are clustered in a small-group "family." They remain together throughout a day of "normal" activities. Supervised by the permanently assigned nursing staff, residents experience feelings of security, group support and bonding. Care is matched to their level of individual competency, enhancing opportunities for success and reducing exposure to failure.

Mary Lucero conducted a week-long training course for Whitehall staff at the outset of the program. She has returned twice more for follow-up sessions, and says she is learning as much as the Whitehall staff about the short- and long-term effects of Comfort Care in actual use.

"Our intention was to standardize the daily activities of dementia residents, to offer them opportunities for exercising motor skills and extend their self-sufficiency -- in eating, dressing, bathing and the like -- for as long as possible," Lucero explains. "Prolonging their ability for self-care goes a long way toward preserving their dignity."

At Whitehall, the Hampton wing is located on the first floor. It has private and semi-private rooms. A nurses' station is centrally located in a bright, cheerfully wallpapered wide corridor. Residents congregate in comfortable chairs in a library nook close to the nurses station. At the end of the corridor is a separate dining room, which also doubles as an activity area between mealtimes.

Whitehall has a full activities program for the general nursing home population, and Ann Owens makes sure the Hampton unit is always included. "Our people can't speak for themselves, so we speak for them. We take them to all the performances, shows, bingo games."

"We don't want to dehumanize our residents in any way," says Mulder. "While people with Alzheimer's may seem to be unaware of their condition, we are responsible for their total well-being. We are their advocates." Mrs. Julia Buchbinder, whose husband Raymond is a Whitehall resident, says "The quality of care and attention Raymond gets its remarkable. Raymond was a brilliant man, an accountant who wrote articles, gave lectures. Now he is a shadow of what he was. He had only been retired for two years when he was first diagnosed with Alzheimer's. On his own, Raymond went to our local Alzheimer's association chapter in Tamarac and asked how they could help him.

"When he became too much for me to handle at home, even with help, I visited many nursing homes. I was impressed with Whitehall immediately. The great cleanliness, the loving care and attention. Every person there -- the therapists, the nurses -- seems to know Raymond. There is such kindness and sweetness. My mind is very much at ease.

"This disease is very hard," Mrs. Buchbinder continues. "There is no communication with Raymond anymore. Support groups at the Alzheimer's Association and a private psychologist I saw helped me to adjust. If you have the proper people to help you, that is the most important thing."

On their advice, Mrs. Buchbinder visits Raymond only three times a week now. "They urged me to have a life of my own, to do something for myself, because Raymond doesn't know if I'm there or not," she says. "Whitehall is his home now. The staff -- Ann and Bernice and the others -- they're Raymond's family now."

Bernice explains, "You have to have a mindset for these people. They need their routine, and we need to know how they react to it. We need to know their inner voices because they can't speak for themselves. Each and every one is a different personality. I have to use my mind to understand their feelings, to know when they want a drink or when they want to move around."

Ann concurs. "Our jobs are so important. In some hospitals or other nursing homes, when an aide puts a food tray in front of a patient and the patient doesn't eat, the aide might just think, 'Well, he doesn't want to eat,' and won't try to feed the patient. In our unit, we'll work with the resident to help him eat. Hydration is very important and weight loss is a constant factor to be reckoned with in Alzheimer's."

The Hampton daily routine is full and busy. It takes a few hours to dress the 14 residents and finish breakfast. Most of the Comfort Care residents are past the wandering stage of their illness and wait quietly for the next activity.

Life in the Hampton wing has daily components similar to any intimate family community, with shared group activities as well as individual comings and goings.

Ann brings out colorful plastic take-apart children's toys and distributes them among the group. She pulls apart the puzzle pieces and hands them to Peggy Cox, 85 years old. Like an eager child, Peggy shows intense concentration as she tries to reassemble the parts. Peggy's daughter, Barbara Burley, comes by to pick up her mother for a doctor's appointment.

"Mother has had a series of brain strokes, infarctions, which have caused speech impairment and loss of some mental abilities," Barbara explains. "She has been in this condition since 1987. I brought her to Florida from California earlier this year, and I can't say enough about her care at Whitehall. Mother has always been a lady, and she receives loving, wonderful care. She is always beautifully groomed, as I would do for her myself.

"When she was in home care, Mother would sleep all day. At Whitehall she is stimulated and engaged in living."

Jeanne, a former resident of the Hampton wing, propels herself down the corridor from the adjacent Savoy wing. She comes to visit every day, says Ann.

Jeanne now requires more highly skilled nursing care than is provided in the Hampton wing. But Bernice and Ann are her family and she remembers them.

Jeanne follows Ann and Bernice with her eyes. Bernice takes Jeanne's hand and kneels down next to the wheelchair. "I love you, I love you," Bernice says over and over. "I remember your face. You love me," she says. There are tears in Jeanne's eyes and a little smile on her lips.

Later, Bernice and Raymond sit quietly "reading" a magazine. Bernice holds Raymond's hand and looks into his eyes, asking him to smile for the photographer. Raymond won't look up. He continues looking at Time magazine.

"He likes to read the numbers," Bernice says of the former accountant. "Focus on the camera," Bernice tells Raymond.

"Focus," Raymond says, still not looking up.

The photographer finishes his work and says, "Thank you, Raymond."

Raymond looks up at last from the magazine. "Is there anything I can do for you?" Raymond asks.

You've done it, Raymond. You've shown us the human spirit we must always respect and protect.