Chris Perna

Culture change arguments for improving well-being and quality of life by de-institutionalizing traditional approaches to care are frequently written off as “soft science.” However, a growing body of empirical research tying well-being to health outcomes and satisfaction has even skeptics reconsidering their stance on culture change.

Take loneliness. You can’t prescribe a drug for loneliness or seek Medicare reimbursements for its treatment. But the Archives of Internal Medicine recently found that elders suffering from loneliness were at significant risk for declining health. Researchers following a group of 1,600 elders over a six-year period found:

• Forty-three percent of those interviewed reported being lonely.
• Nearly one-quarter of the subjects who reported being lonely died over the six-year study, compared to 14% of non-lonely participants – a 45% increase in mortality.
• Lonely participants had a 59% greater risk of suffering a decline in function.

Loneliness, along with helplessness and boredom, are singled out in the Eden Alternative philosophy as the “three plagues” most detrimental to the health and well-being of elders in long-term care. But measuring well-being is not a priority of the care industry.

The institutional model practiced by the vast majority of organizations delivering care has well-defined measurements, focused mostly around quality of care issues, with outcomes posted on our government’s website for all to see. If used properly, they are effective for determining if an elder is receiving appropriate physical care. But they fail to measure the nuances of well-being and quality of life.

To address this deficit, The Eden Alternative launched a grant-funded effort that brought together a task force of culture change experts, including Eden Alternative Co-founder, Bill Thomas, M.D., and identified seven primary Domains of Well-Being™: identity, growth, autonomy, security, connectedness, meaning, and joy.

Together, these domains provide a simple framework for asking thoughtful questions that help identify the unmet needs of those receiving care.  For example, a care team might ask:

  • How can conversation and written language be used to highlight who someone is as a whole human being, when so many of our systems tend to focus on the disease or diagnosis before the person? 
  • How can knowledge of who this person is, and has been, coupled with daily observation help determine her strengths and interests? 
  • Building from these strengths and interests, how do we develop a natural rhythm of daily life that strikes a balance between privacy and meaningful connections with others unique to her and driven by her choices?

Care providers find that working with these domains helps them meet challenges in activities of daily living (ADLs), care planning, and even the creation of policies and procedures with creativity, awareness, and focus. Problem-solving becomes less abstract, more intuitive, and centered around the needs of the person. As a result, caregivers and care receivers function more as partners in care, which improves well-being for all involved. Ultimately, it is the frame of reference that the Domains of Well-Being create that really stands out.

“What makes the Domains of Well-Being so powerful is the way they bring us back to our own experience as human beings,” Rick Gamache, Administrator of Elmhurst Extended Care in Providence, RI, told us after learning about the domains in an Eden Alternative training. “Well-being is really about our ability to grow into our greatest potential, no matter who we are, how old we are, or where we live. Isn’t this what we all want for ourselves?  If we stay in touch with this, we really can’t lose as providers of genuine care.”

Chris Perna is the CEO of the Eden Alternative.