Can person-centered care be saved?

Person-centered care (PCC), a part of the culture change movement in long-term care, has been called an “attitude,” a “transformation,” and a “gold standard of care,” and its popularity is sweeping through the long-term care industry. Already, it is the biggest thing in assisted living marketing since the term homelike.

Unfortunately, like many popular trends, the concept of person-centered care is already being watered down and overused. The concept is even being adopted by other industries. For example, a builder in Florida now advertises “women-centered homes.” What do such obvious attempts to exploit the concept signal to consumers? How far does it go? Will there next be “child-centered day care,” or “pet-centered veterinary clinics?” Consumers wonder if assisted living facilities have not been person-centered all along, then what have they been “centering” on?
 

To address the dilution of culture change and PCC, Bill Keane, chief operating officer of Harbor Senior Concepts of Illinois, wrote in Nursing Homes/Long Term Care Management in November 2005:

To many who saw the early principles of the Eden Alternative as just another “fur and feathers” fad, culture change has become the ongoing fad of fun things to do as work plans, resident census, risk management, and survey processes permit.
 

How can the industry preserve the real impact of PCC without diluting the core ideals? To answer this question, we need to look back to the beginnings of the concept itself.

The Roots of Culture Change

The culture change movement in long-term care was specifically designed for nursing homes. At the time, nursing home care was based on a hospital model. Although the patients were ill and needed care, they were not ill enough to warrant daily physician monitoring, and hospital beds were needed for more intensive cases.

The mind-set of hospital expectations filtered into nursing homes: When admitted to the hospital, a person expects the medical illness to be treated. Unlike hospitals, however, people actually lived in nursing homes and expectations were different. Because of the disconnect between the inception of the nursing home in a medical model and the actual use of the nursing home as a quasi-residence, people rightly perceived the nursing home as an institution that was cold, disease focused, and saw people simply as room numbers. In such a setting, diseases might be “managed,” but all hope of any quality of life for the individual was lost. In such a context, culture change was indeed a welcome transformation.

Culture change has as its basic precept the care of the person rather than management of a disease. With the advent of culture change, the days of bathing only those people on the right or left side of the hallway on certain days, residents lining up for a set mealtime with no menu choices, medications given only at certain times of day, and nurses’ stations built like bunkers were quickly disappearing. Culture change makes sense in nursing homes, as does its major tenet—person-centered care.

Actually, the concept was not original to nursing home care. The wheel had already been invented by Carl Rogers, an influential psychologist and psychotherapist who was the founder of “client-centered psychotherapy.” Rogers developed client-centered counseling as a way to increase the psychotherapy patient’s active participation in the process and to emphasize a nonjudgmental format for psychotherapy. The word “client” in the business world is akin to “customer.” A client is one who seeks something needed (a service or a product), makes choices and decisions, and can negotiate in obtaining what is needed. Thus, Rogers replaced the word “patient” with “client” to de-medicalize the relationship and empower the patient/client.

Similarly, the concept of PCC, when applied in the long-term care setting, seeks to de-medicalize the relationship between resident and caregiver, increase the long-term care resident’s active participation in the process of care, engage the staff and the resident in a relationship, and provide a nonjudgmental format for care. The term “resident” implies that the person is at home. Much like changing “patient” to “client,” changing “patient” to “resident” eliminates a perceived stigma. “Resident” becomes an empowering term that says, “I am at home and I am in charge.”

A Look at PCC in Action

Perhaps the best way to view the ideal of PCC is to imagine how differently you would provide care if that resident was your own family member. You would take into account personality factors, personal history, knowledge of likes and dislikes, and so on.

This would, of course, be based on your long-standing relationship with the person, and it would be based on your knowledge of their patterns of behavior. So you would actually use that knowledge when you approach the person, speak, touch, and engage in activities with him or her, and when you talk about the person with others.

But wait a minute—wasn’t the whole point that assisted living is centered on a different attitude from nursing homes? Wasn’t assisted living supposed to be a place where one could maintain autonomy while getting some help with a few activities of daily living? The answer is yes, but after a decade of “aging in place,” the assisted living facility now looks similar to the nursing home. What began as a place for ambulatory, active seniors who needed a little help, has turned into a place where wheelchairs, walkers, medication carts, and private nurses abound. Rather quickly, the assisted living model has become the “Mini-Me” of nursing homes. Even more significant is the fact that with 50% to 70% of assisted living residents having some form of dementia, PCC has become PCDC—person-centered dementia care.

Implementing PCDC in Long-Term Care

How is PCDC currently conceptualized in long-term care? Some say that caregiving is “heart, not knowledge.” Some have said that the person should be treated, not the disease. Although both of these sentiments sound good and feel quite warm and fuzzy, neither is true in relation to dementia. In caring for the 50% to 70% of residents who have dementia, it is not sufficient to have compassion and sympathy. A competent caregiver must be able to synthesize the personal information about the resident with knowledge about the disease. The caregiver must know someone’s personal history, understand how dementia affects the brain, understand how the diseased brain can change behavior, and then use that knowledge to provide care that meets the needs of the resident in a compassionate and dignified way. Knowing all of this, doesn’t a bumper sticker sentiment such as “heart, not knowledge” seem inadequate?

The Eden Alternative, conceived as a humane model for nursing home care, has suffered from misapplication to the care of people with dementia. The Eden way was never designed for dementia care. In applying the Eden principles to residents with dementia, well-meaning reformers actually robbed the movement of much of its power and helped it to become just another fad. For instance, an aviary is used to allow residents more natural stimulation, or a calming place to go and perhaps start conversations with other residents, or a place where families can entertain each other with the antics of the birds.

However, if an extravagantly expensive aviary is added to a facility populated by residents with dementia without proper understanding of its purpose, what really happens is that wheelchairs of sleeping residents are placed in front of it as a babysitting technique. If the Eden Alternative principles were applied in dementia care, then the staff and families could use the aviary to redirect an anxious, confused, or even agitated resident. But the missing piece is the knowledge about dementia. If you know about dementia, then you know how to use the aviary as a tool and not merely as a decoration.

So the missing link in our current concept of PCDC is the knowledge about dementia. If we are to prevent PCDC from becoming a marketing fad, it will only be with a commitment to real training, real education, and real expectations of what dementia care should be. Unfortunately, training is currently considered a cost rather than an investment.

Gaining ‘Real Knowledge’

Family caregivers are constantly trying to figure out how to manage behavior problems and still have a meaningful relationship. However, the stress and the perceived burden of care become so great, that they can no longer provide care in an objective way. So they bring their loved ones to you. They believe that you, as the professed expert in dementia care, know that if the person has dementia, then their behavior will be altered. They believe that you know enough about dementia that you can detect changes in patterns of behavior and understand the reason for those changes. More importantly, they believe that you will use that knowledge when you approach their loved ones, when you speak to them, when you touch them, when you engage in activities with them, and when you talk about them with others.

This is the real meaning of person-centered care. If you have real knowledge about dementia and if you apply that knowledge in caring for residents in a dignified and compassionate way, then you will have enacted person-centered care and it will be a meaningful and integral part of your care rather than just another fad.

Katherine E. Goethe, PhD, and Martha E. Leatherman, MD, are partners in the consulting firm Dignity First, based in San Antonio, Texas, and focused on programs improving long-term caregiver skills. They are experts in dementia, and they provide education/consulting to assisted living and nursing home facilities. For more information, call (210) 317-5852 or visit www.dignityfirst.net.