When the Johns Hopkins CAPABLE team met “Edna,” she hadn’t been downstairs in her own home for two years. Highly sedated and unable to get out of bed on her own, she spent all day nodding off on a commode chair in her room. Each day her husband would lift her out of bed and guide her as gently as he could to her chair, and then lift her back into bed at night.
“When her grandchildren came over they would greet her but then they would go right back downstairs, because it’s hard to be in a small room with your grandmother who is unable to fully interact,” said Sarah Szanton, Director of the Center for Innovative Care in Aging at Johns Hopkins and creator of the CAPABLE model.
CAPABLE, which stands for Community Aging in Place—Advancing Better Living for Elders, is a complex care model tailored to the needs of people like Edna: older adults with functional limitations who are living at home. As noted in our Blueprint for Complex Care, one of the core tenets of complex care is that it’s team-based. The CAPABLE model’s care team is particularly unique: made up of an occupational therapist (OT), registered nurse (RN), and handyman, the team works with patients to increase their capacity to function at home by basing their intervention around the patient’s own goals.
Edna wasn’t able to identify goals the first time the team visited. She was so sedated that she was nodding off between sentences. It’s not uncommon for older adults with complex health needs to be on many medications at once, which is why one of the main roles of the RN on the CAPABLE team is medication reconciliation. Once her nurse was able to sort through the 26 medications Edna’s family had been giving her daily and coach the family on correct dosage and timing, Sarah said that Edna “woke up.” Alert and excited for the first time in years, she began to work with her OT on her goal: to get downstairs on her own and wash her hair in the kitchen sink.
Addressing the home environment
Before she co-created the CAPABLE model with Drexel’s Laura Gitlin, Sarah was a nurse practitioner doing home-based medical care, but quickly became frustrated with the limitations of the traditional medical model. “Doing housecalls,” Sarah said, “I could see that patients’ environments were as disabling to them as their medical conditions, and that just addressing those in a vacuum wasn’t enough.”
CAPABLE, and its focus on modifying the built environment to help people age at home, was born in part from the 2008 housing crisis. Sarah responded to a call for proposals from the National Institutes of Health that asked applicants to think about employing people who were unemployed because of the recession. “I started thinking about carpenters,” said Sarah.
CAPABLE provides a home budget for each patient that includes any combination of home repair, home modification, everyday items, and assistive devices. Relatively simple changes, tailored to individual need, can allow people with functional limitations to thrive in their environments. In brainstorming with her OT, Edna came up with a clever and affordable idea: putting a series of plastic deck chairs along the hallway to the stairs to allow her to rest as she slowly strengthened her deconditioned muscles. The OT showed her how to do chair stands: stand up, walk a few feet, sit back down.
As she built up her stamina, the handyman added a second bannister and better lighting to the stairs. With strengthened legs and the ability to use both arms to support herself, Edna finally made it downstairs and, to her great delight, washed her hair in the kitchen sink. To help her get in and out of bed, the team added a grab bar, risers, and a piece of plywood between the box spring and mattress for better support. The first time that she got out of bed on her own, her husband burst into tears.
While stories like Edna’s are a great illustration of the CAPABLE model’s promise, Sarah and her team have also rigorously evaluated the model’s impact. An evaluation published in Health Affairs in 2017 showed a Medicare savings of over $2700 per patient per quarter.
Along with cost savings, the CAPABLE team measures how many activities of daily living (ADLs), such as dressing, bathing, or toileting, their patients have trouble with before and after participating in the program. They’ve found that the program cuts the number of ADLs patients are struggling with almost in half, from nearly four out of eight to just two. In addition, they have seen reduced symptoms of depression and increased motivation after participating in the program.
“ADLs are the biggest predictor for nursing home admission besides dementia,” said Sarah, “and they’re much more modifiable, though at the time [that I developed the model] people didn’t really think they were. We’ve shown that they are.”
Scaling the model
The CAPABLE model has now been implemented in 27 sites (each of which may have multiple care teams) across 13 states. Though the core of the model is the same across sites, there is plenty of flexibility for innovation. Some sites have added a social worker to the care team. And not all implementing sites are healthcare organizations; some are housing organizations like Habitat for Humanity that have partnered with healthcare teams. The ways that sites recruit patients and the specific population they target vary. But program outcome measurements, including the way that ADLs are measured, are always the same so that the data can be pooled and analyzed across sites.
Building on their replication success, Sarah and her team hope that getting the program covered by Medicare (the program is already covered by Medicare Advantage, but not traditional Medicare) will allow them to reach even more vulnerable older adults across the country. Currently, annual Medicare wellness visits are only done at home for patients who are homebound. “But whether you’re homebound or not, the home environment is really important for older adults,” Sarah said. She’s hoping that incorporating a home-based screening into Medicare wellness visits every other year could allow patients to enroll based on need in either a “CAPABLE-light” model that would include just one or two care team visits, or the full CAPABLE model.
Patient-centered goals at the core
Two months after Edna graduated from CAPABLE, her granddaughter called the team. The whole family, including her grandmother, who just half a year ago spent all day on a commode chair unable to move or interact with her family, was going to Atlantic City on vacation.
So what’s the secret behind this radical transformation? The real magic of CAPABLE, according to Sarah, is its emphasis on patient-directed goals and brainstorming. It is only after patients articulate their goals that the specialized knowledge of the RN, OT, and handyman are put to use.
“[Edna] wouldn’t have done all that practicing if we had just come in and said, ‘your legs need to be stronger,’ or ‘you need to practice walking up and down the hallway,’” said Sarah. “No one would walk into that house and say ‘you should really wash your hair in the kitchen sink,’ but that’s what was really motivating to her. CAPABLE is based on what matters most to the person. To really address the person and their environment, clinicians need to be trained to elicit those goals and act on them.”