New Ways to Aid the Old
Advocates Seek More Options, Less Institutionalization of Care

By Beth Baker
Special to The Washington Post
Tuesday, June 12, 2007

Twenty years after Congress vowed to improve the way we care for the old and the infirm, nursing homes still inspire dread. But some mavericks are working to deinstitutionalize them and make them more like home.

"We want to change the culture of aging," said Bonnie Kantor, executive director of the nonprofit Pioneer Network, a Rochester, N.Y.-based umbrella group leading the effort, "and we're beginning with nursing homes." Rather than warehouse those who are frail or disabled, the advocates of change argue, providers of long-term care need to create genuine communities where people receive needed services while continuing to lead meaningful lives.

Only a few hundred of more than 16,000 nursing homes nationwide have undergone the systemic transformation envisioned, according to the Pioneer Network. Hundreds more, including some in the Washington area, are taking first steps in that direction.

What distinguishes a humane nursing home? Pioneering homes go by a variety of names and descriptions -- Eden Alternative, Green House, Planetree, resident-directed, person-centered -- but share common features: autonomy and choice for residents, homey personal spaces, valued staff and a strong community of residents, staff, families and volunteers.

Some 1.5 million Americans live in nursing homes, including nearly 20 percent of those 85 and older, according to the National Institute on Aging. All receive medical services such as physical therapy, medication management and wound care. Roughly 10 percent of those in nursing homes are short-term patients who need care while recuperating from a sickness or injury.

More than half of nursing home residents use wheelchairs, and nearly half have dementia, according to federal data; 4 percent are bedridden. Nursing homes may be free-standing or share a campus with assisted-living facilities (which offer communal meals and help with dressing and bathing) and/or independent apartments for the elderly.

In 1987 Congress passed the Nursing Home Reform Law, promising fundamental rights to residents. But the law's promise has gone unmet, advocates say. "Rights, respect, being treated as a unique individual, staff who are trained, quality of care and quality of life -- these key principles of the Nursing Home Reform Law are now 20 years old," said Alice Hedt, executive director of the National Citizens' Coalition for Nursing Home Reform. "We're eager for culture change to take hold so that each resident can enjoy truly individualized, person-directed care."

The Pioneer Network wants to see at least 10 percent of the nation's nursing homes overhauled in the next 10 years. The Robert Wood Johnson Foundation boosted such efforts in 2005 when it announced a $10 million program to encourage the creation of 50 Green Houses, innovative models of elder care developed by revolutionary gerentologist Bill Thomas.

The first Green Houses were built in 2003 by Mississippi Methodist Senior Services in Tupelo. They offer a residential setting and specially trained aides who act as caregivers, homemakers and companions, supported by nurses and therapists. Today, Green Houses are operating in nine additional cities, with 15 others in the development stage.

Pioneering homes demonstrate that:

· Nursing home residents want to make their own decisions. In her 20 years of research on quality of life for nursing home residents, Rosalie Kane, a professor at the University of Minnesota's School of Public Health, has found that residents want more control than most have over their daily lives and that this freedom is key to their "well-being, mental health and even physical health." Among the things residents want to decide, Kane's surveys show: how and when they use the phone or leave a facility for visits, who their roommate is, what food they eat, and what time they wake up and go to bed. By getting rid of strict institutional schedules and reorganizing staff time, pioneering homes aim to deliver on these desires.

· Life can have meaning, no matter where we live. Nursing home residents want to be more than just recipients of care, studies show. Pioneering homes find that many residents enjoy making a contribution, whether it's helping prepare meals, caring for a dog, volunteering to teach English to a staff member or comforting another resident who feels low. The more spontaneous and personalized the activities, the more residents remain engaged.

Most nursing homes emphasize custodial care to the exclusion of normal life, said John Henry, administrator at Ruxton Health of Denton, Md. "If I asked you what did you do last week, you wouldn't say, 'I ate, I went to the bathroom, I got dressed.' It's the life beyond that that is fun," he said.

At Ruxton, residents can choose from organized activities or more-spontaneous ones: cooking a favorite dish in the resident kitchen, playing checkers with friends in a comfortable den or inviting a staff member to sit and chat or read to them. Geneva Gibbs, 84, said she's glad to live there. Not that life is perfect -- "I do miss my freedom and being able to walk," she said. But she appreciates that her church comes there to hold services. She loves word games -- "makes me kindle what I've got up there," she said, pointing to her head -- and she values the friends she has made.

· Aides can be caring and competent, given a supportive culture. Industry-wide, the high turnover of nursing home aides -- 70 to 100 percent a year -- makes it nearly impossible to deliver quality care. Researchers who interviewed aides for a study, published in 2003 in the Journal of Gerontological Nursing, found that aides believed supervisors "treated them individually as if they were all unskilled, dishonest, lazy, and stupid." Often working without adequate assistance, aides surveyed in numerous studies say they can't give residents what they most want -- consistent care and friendship.

Transformational homes reduce staff turnover and encourage aides to build relationships with residents.

Ruxton's director of nursing, Lisa Havelow, expects her staff members to talk to residents, show them affection and make their wishes their top priority. That suits geriatric nursing assistant Sheretta Jenkins just fine. "My old jobs, I used to hate to wake up and go to work," she said. "I don't feel that way here. You can be happy. You can joke with residents. You can sit down and read to them."

Other pioneering homes offer career ladders, training opportunities and programs requested by workers. Providence Mount St. Vincent in Seattle, for example, helps workers buy computers for home use.

· Enriching the environment enriches life. Forget hospital hallways and double rooms with flimsy privacy curtains. Some cutting-edge homes have living rooms, country kitchens, private bedrooms and baths -- available to all residents, including those on Medicaid. Families can host potlucks, birthday parties or make a pot of coffee. Many homes have cats and dogs, or gardens with raised beds for people in wheelchairs. Others have on-site day-care centers, with children a normal part of life.

Even those saddled with an old building, such as Ruxton of Denton, can make it homier. Geneva Gibbs is proud of her room, decorated in purple, her favorite color. She also enjoys rocking on the home's front porch. A new spa with plush towels, soft music and a faux fire in the small fireplace turned residents' bathing experience from grim to luxurious, staff members say.

The Methodist Home in Washington, on the path to becoming a pioneering home, hosts a happy hour for residents each week in a courtyard garden. "I was just mixing margaritas for the troops," said administrator Sandy Douglass. "No salt on the rim for those with special diets!"

· Person-centered care improves life for people with dementia. A study in a British medical journal found that dementia patients in homes with specially trained staff, a more hospitable environment and family caregivers were less dependent on antipsychotic drugs than were those in more typical nursing homes. Another study found that agitation, aggression and discomfort decreased in dementia patients who received more individualized care. By tapping into people's lifelong interests and offering them new opportunities, such as art and dance, homes such as Providence Mount St. Vincent report that difficult behaviors subside.

· The best doesn't have to cost more. For her recent doctoral dissertation, Amy Elliot at Ohio State University's John Glenn School of Public Affairs found that transformed homes had better operating margins than traditional ones. "Overall, pioneering homes really outperformed the control homes," she said. "It shows it's the right business model."

Reduced staff turnover is part of the reason. Nationally, the cost of turnover among direct-care staff is $4 billion a year, according to a study by Better Jobs, Better Care, a research and demonstration program funded by the Robert Wood Johnson Foundation and the Atlantic Philanthropies. In 2003, when St. John's Home in Rochester, N.Y., became an Eden Alternative home, its turnover was 30 percent; three years later it had fallen to 13 percent. "It's had so many good results," said Al Power, assistant medical director. "Our surveys have been without a major deficiency, and our elder and family satisfaction has gone up every year."

· Leaders must lead. The culture change at pioneering homes depends on the commitment of the administrator, director of nursing and board, say those who have undertaken it. "From the beginning, I tell [employees] I'm a different kind of director of nursing," Havelow said. "I expect interaction [between the staff] and the residents." Administrator Henry models the relationships he wants people to have. "I've never seen another administrator like John," said Deborah Jackson, a cook and veteran of 29 years in long-term care. "If you need a hand cleaning up, he pitches in. He compliments us on the food daily."

"When we eat dinner, I've known him to eat at our table," Geneva Gibbs said. "He's the big boss -- I thought he wouldn't eat with us!" ·

To learn more about the grass-roots movement to transform nursing homes, including stories from the field, research, resources and more, visit:http://www.pioneernetwork.net,http://www.actionpact.com,http://www.edenalt.com,http://www.nccnhr.org,http://www.voicesforqualitycare.org.

Beth Baker is a frequent contributor to the Health section. Some of the reporting for this article appeared in her book "Old Age in a New Age -- The Promise of Transformative Nursing Homes." Comments:health@washpost.com.