“There has been a lot of paternalism about direct-care staff – the notion that they are not really adults,” says Anna Ortigara. “People wonder: Are they really capable of being in a lead role? Can they be trusted to make good decisions? Are they capable of self-direction?”

Instead of these questions, Ortigara believes, we should ask ourselves: “How can we possibly think we are going to improve long term care without involving frontline workers? We need them at the table in order to achieve cultural transformation - and why wouldn’t we want them at the table?”

A Chicago-area nurse with a master’s degree in gerontological nursing and over a quarter of a century’s experience in long-term care, during which she has created pioneering curricula for training and supporting direct-care workers, Ortigara has a passion for improving job and care quality. She also has a talent for asking Socratic questions about what keeps us from making more progress.

Well-being, for a person with dementia, rests on these important relationships
Ortigara came to her interest in direct-care workers through a typical nurse’s path: she wanted to improve care quality for long-term care residents. One of the main factors that determined how satisfied her residents were, she found, was the quality of their relationships with direct-care workers. “At the end of the day, the thing that elder probably cared about the most was that they were seen and they were heard and respected as a person — that they were cared about, and that the person caring for them liked them.”

Those relationships were particularly crucial, she found, for people with dementia. “Well-being, for a person with dementia, has a lot to do with who’s caring for them. When there was a nursing assistant or a nurse or an activities director who got to really know the person, liked them, and saw their needs, and then approached them in a way that was calm and comfortable and supportive, the person with dementia thrived. You could see they were comfortable and engaged. Their well-being really was resting on these important relationships.”

It’s about tuning into the moment
Some caregivers, she found, “just intuitively got it,” while others just can’t seem to see the world through the eyes of the person with dementia, “and you’re doing them and the person with dementia a favor if you recognize that.” But what about all those caregivers in between, who might not start out understanding what the person with dementia needs but can learn? Ortigara learned to look for a talent for connection.

“When I was the assistant director of nursing for a very large nursing home, I was in charge of hiring all caregivers, so I started to get focused on what it took to do this job well,” she says. “During an interview, I would always introduce the person to somebody with dementia who I knew enjoyed being social if you just reached out to them. Then I would say ‘I need to go check on something. Why don’t you just talk to her for a couple of minutes?’ and I’d go somewhere nearby and pretend to do something. I would be watching them interact. I wasn’t looking for the candidate to have any advanced skills, but I wanted to see them reach out and make a connection. I was looking for someone who was interested in getting to know that elder.”

Later in her career, she started studying the CNAs with a gift for dementia care, looking for something she could learn and pass on to others. The key, she found, is that they were able to “put themselves in the moment with the person with dementia.” And she knew that could be taught, because she got better herself. “When I got started working with people with dementia, I had pretty good intuitive skills. But once I realized certain approaches and skills helped support the person with dementia, I got a lot better.”

One of Ortigara’s best teachers was a CNA named Dixie. “There was one woman with dementia named Ruth who was always worried: ‘Am I doing all right?’ She was always anxious, but she was better around Dixie. One day I realized why. Dixie would just stop, look this woman in the eye, take her hand, and say: ‘Ruth, you are such a good woman, and you’ve done such a good job, and everything is okay.’ Ruth had two sons, and Dixie would say, ‘You’ve done such a good job of raising those children. They’re such good boys.’ You could just see Ruth take a deep breath and relax. Not that she wouldn’t get anxious again ten minutes later, but for a time she could let go of that anxiety. Dixie saw her need for validation, and she gave it to her. And she didn’t do it in a cute way, not at all. It was just tuning into the moment, hearing Ruth and responding to her.”

The best teaching materials in the world can’t fix the problem
In 1995, Ortigara began working at the Alzheimer’s Disease Center at Rush University Medical Center, where she created a dementia care course for nursing home staff. Over the next five years, she and her colleagues taught the course to 8,000 nursing assistants, nurses, administrators and other staff. And then she had one of what she calls “my ‘aha!’ moments.”

“The course was very interactive, and they all liked it,” she says. “But when I came back two or three months later to see how they were doing and if it was making a difference in their work, half the people were gone. That’s when I had my big breakthrough, which is that we can have the best teaching materials in the world, but we’re never going to make things better if we don’t figure out how to decrease turnover rates. And that means creating jobs where people have high job satisfaction, where they have direct input into their processes, where they have the materials and time and resources to do the job right.

“I realized: It’s the workforce, stupid! That’s what really got me started.”

How can these people be in relationship with elders when they feel so devalued?
A colleague at the MatherLifeways Institute on Aging volunteered to hire Ortigara to develop a formal program aimed at improving the stability of the direct-care workforce. Together with Dr. Linda Hollinger-Smith, she began developing the research-based model that became LEAP. http://www.directcareclearinghouse.org/practices/r_pp_det.jsp?res_id=47610

Ortigara thought she’d be creating a program aimed at empowering CNAs. “In another job I created a career ladder for CNAs and a peer mentoring program. I was convinced I was going to do something to help the nursing assistant in nursing homes.”

But in researching what made nursing assistants leave, she found that all roads led to nurse supervisors. She was particularly struck by the focus groups conducted by her new employer, the Life Services Network provider association. LSN had interviewed some of the best nursing assistants employed by its member organizations — “the people we want to keep,” as Ortigara puts it. Asked what they hated about the job, “They said: The nurses. They hated nurses looking at them like they were doing the worst job on earth, nurses saying their job was something they would never do, nurses just sitting at the nurse’s station and not helping when a resident needed something and they couldn’t get to it right away.”

As long as nursing assistants felt disrespected by their supervisors, Ortigara realized, they would be less likely to do their best and less likely to stay on the job, and no “empowerment” program could make much of a difference. “How can these people be in relationship with these elders when they feel so devalued and so disrespected? It just doesn’t work. So LEAP became about nurses too.”

“I’m not their boss. I don’t want to be their boss”
Ortigara then talked to nurses to learn how they felt about supervising CNAs. “This was one of my biggest ‘aha!’ moments, because so many said, ‘I’m not their boss. I don’t want to be their boss. I don’t even know how to be their boss. I don’t have time to babysit them. They have to grow up.’

“All of a sudden it came crashing down on me: This is a profound system disconnect. We have asked nurses to manage nursing assistants, but we have not supported them to grow as leaders.”

The goal of LEAP, says Ortigara, is “to support nurses to develop as role models and leaders and team builders and gerontological nurses. Their role is to support the CNAs to be in supportive, respectful, empowering relationships with elders. For nursing assistants to do that, they need the resources, the time, the education, the supplies and the support to do their job right. They need that from their direct supervisors. The other thing they need is excellent mentoring when they’re brand new and career paths — opportunities to grow and to achieve and to be promoted and to be reimbursed more.”

Putting what we know about direct-care work into practice
Last November, Ortigara joined THE GREEN HOUSE ® Project (http://www.ncbcapitalimpact.org/default.aspx?id=146), a new model created by Dr. Bill Thomas for housing the aging that is built around self-managed teams of direct-care workers. The workers, who are called Shahbazim (plural for Shahbaz), are “literally running these homes,” says Ortigara. “The nurses are important. The therapists are important. The dieticians are important. They’re all part of the clinical support team. But this model moves away from a hierarchical structure. They’re not the boss of the Shahbazim; they’re care team partners with the Shahbazim and the elders.

Each Green House home houses six to ten elders and is managed by a team of Shahbazim. The team includes five coordinator positions around key functions – a team coordinator, a food coordinator, a scheduling coordinator; a care coordinator, and a housekeeping coordinator – with those roles often rotated among the team members.

The empowerment of the Shahbazim is one key to the success of the Green House model, says Ortigara along with recognizing the power of elders to direct and guide their lives. The Shahbazim are partners with elders and have as their mission to sustain, nurture and protect them.

In addition, Ortigara says, “Leadership is terribly important.” Green House leaders known as “guides” serve as coaches for the Shahbazim in planning, problem solving, and working through the daily challenges of caring for elders.

“But the transformation of workforce is so cool,” she says. “It takes everything we know about direct-care work – that people need peer mentors, that people should self-schedule, that people need control over their daily work – and puts it all into practice.

What’s more, there’s proof of that quality jobs/quality care connection that got Ortigara interested in direct-care work in the first place. “We have early research by Rosalie Kane that shows we have better outcomes, lower staff turnover rates, better outcomes on some of the clinical indicators,” says Ortigara.

Ortigara is confident that we can transform long-term care: her life’s work has shown her that it’s possible. But our success depends on how we answer one of her deceptively simple questions: “Do you believe direct-care staff have the abilities and skills to manage their own work?”

Part of PHI’s Expert Interview Series.