Improving the Quality of Life in Long-Term Eldercare

Treating elders like people, not patients
By Donald H. Ford, PhD

Our aging society has a large and rapidly growing population of elderly people. Many have incurable, debilitating conditions, such as Alzheimer’s disease, that require long-term care. Our long-term care practices, however, leave much to be desired in terms of preserving dignity, enticing engagement, and fulfilling patients’ remaining potential to live life to their fullest extent.

Current long-term care recipients are typically bored, unhappy, lonely, depressed, distressed, or angry, while those finding it necessary to put loved ones in such programs often agonize with feelings of guilt.

Problems with current caregiving models

We are all familiar with the coming demographic shift in the US population. As the largest segment of the population ages, the number of Alzheimer’s disease cases is expected to triple over the next four decades. Currently, two-thirds of the people in nursing homes are women. It goes without saying that we all want to provide our loved ones with happiness and comfort—even if we no longer have the resources to care for them directly.

In contrast, there is a rapidly growing public dissatisfaction with the quality of life provided to residents in existing institutions. Out of this comes a desperate desire to find better ways of caring for loved ones so afflicted. Implications of these demographic numbers for future eldercare are frightening, especially for women. We need positive alternatives to the current model of care.

To understand the problem, it is useful to think of a person as composed of three parts: The biological person is all the material parts and processes that provide the physical basis for all human functioning and maintaining life. The psychological person uses thinking, remembering, and emotional processes to guide their activities. The behavioral person uses perceptual, communicative, and action processes to interact and produce the results required by the other two. They must function as a team to produce an effective and satisfying life—if any component malfunctions, it produces a disruption in the team’s activity.

The Medical Model of Care was created to help fix or compensate for dysfunctions in the biological person. Society appropriately gives biologically focused medical care priority because it preserves life and the biological base that makes psychological and behavioral functions possible. One result of the success of short-term medical care is that society has—through laws, policies, and funding and regulatory arrangements— also assigned medical care responsibility for long-term eldercare.

But short-term care medical care staff do not have the knowledge and skills essential for quality-of-life focused care. As a result of those policies, the care provided is largely limited to physical care, with medications and pain control guided by medically trained people—this is why some call it “warehousing patients.”

An alternative care model

What changes are needed to improve the situation? Four kinds of innovative developments are necessary to create the kind of alternative care model needed for long-term eldercare.

1// Creating a sound model of long-term care focused on a positive quality of life.

2// Readily available programs for training caregivers in a developmental approach.

3// Modifications of relevant existing laws, policies, and funding and regulatory arrangements to support the implementation of an alternative to the medical model for long-term eldercare.

4// Imaginative designs for facilities supportive of this new kind of eldercare program, in contrast to the hospital-like facilities now so common in nursing home buildings.

Understanding what care is needed

It is our psychological and behavioral capabilities that enable us to care for ourselves, to guide and give meaning to our lives, and to experience pleasure and satisfaction. When they are severely disrupted, as occurs with dementia, one can no longer care for one’s self and long-term care becomes necessary. But the care needed then isn’t medical: The person’s biological problems can’t be fixed (e.g., a damaged brain) so only very limited maintenance medical attention is needed. As such, a patient’s primary need is help in learning to live with their permanent limitations and how to use their remaining capabilities to still have a life that includes some satisfaction, pleasure, and dignity. The Developmental Model of Eldercare created for my wife, Carol, provides such an alternative.

The Developmental Model of Eldercare

Her first symptoms of Alzheimer’s appeared as the 20th century ended. With her cooperation, I used my 50 years of experience as psychotherapist, counselor, teacher, dean of a college of health and human development, and scholar to design and implement a home-based care program for her. It is described in some detail in my book, Carol’s Alzheimer’s Journey. It replaces the medical focus on what is wrong with a person with a positive focus on the person’s remaining capabilities. To enjoy life, a person needs things they want to do and ways of doing them that produce satisfaction. Developmental care emphasizes health promotion using a person’s history of satisfying activities to create current versions that are within their limitations.

Has it worked? Information about her activities was recorded every day of Carol’s final six years (over 2,100 descriptions). Despite severe limitations in walking, talking, feeding, and caring for herself, she enjoyed varied activities every day. In over 80 percent of those days, Carol was described as interested, talking with her aide, smiling, and laughing. A woman with a severe stroke has received the same kind of care for four years so far, with similar results. Those results are dramatically more positive than those seen in current care programs. This developmental model applies the scientifically based theory of human development to eldercare. The following examples illustrate how caregivers need not know all the theory to use the methods.

Understanding developmental processes

Developmental processes create a self-directing, self-constructing person. Every person has the same evolution-based basic processes that enable them to adaptively guide their development and actions in varying contexts. In the sense that we all live by the same processes, we are all alike!

These processes include self-direction by creating goals that specify future desired conditions. It serves as “the boss” whose directions the other four processes must follow. Those four sub-processes include self-organizing by designing ways to accomplish specified goals within the possibilities; self-guiding by creating transactions to accomplish each goal; self-regulating by evaluating and modifying the activities as needed; and lastly, self-rewarding when the goals are successfully achieved.

These five processes function together, as a unit, through interrelated signals. The process starts anew when a person commits themselves to accomplishing a specific goal. It continues to control one’s current behavior until the person achieves the goal, decides to focus on another goal and thus postpone the current goal, or gives up on the goal. This type of pattern unit is called a behavior episode (BE).

On behaviors and goals

A person’s behavior can be understood as a series of BEs. For example, this morning I groomed myself for the day (BE1 completed). Next, I read the paper while preparing and eating breakfast (multitasking BE2 completed). Then I went to my study and began writing a paper (BE3 begins). At noon an old friend arrived for lunch (BE3 postponed; BE4 begins). After lunch (BE4 completed), I went to the bathroom, got a drink (BE5 completed), and then returned to my writing project (BE3 reactivated). After three hours of writing I decided the paper was lousy and destroyed it (BE3 discarded), and so it goes.

BEs perform two developmental roles. First, they organize the real-time flow of our goals and activities. Second, the experiences and results produced provide the basis for learning, making memories, and personal development. BEs that accomplish goals produce positive thoughts and feelings that make us want to repeat new versions of them; failure produces the opposite. Successfully repeating a type of BE results in a generalized version of it, called a behavior episode schema (BES). They then guide future success in specific BEs with similar goals. The intensive “practice sessions” of actors and athletes are examples of that process. Our developmental processes are the same but how we use them produces our individualized life patterns.

Controlling your own life

Humans treasure our inborn self-direction because it enables us to control our own lives. Eldercare should be designed to preserve that feeling of self-control, particularly as the care recipient’s helplessness increases. If something or someone interferes with what a person wants to do, they usually object in some way: Think of how a 2-year-old or a teenager would react in that situation. Then think about how you would react. When eldercare patients try to exert control over their life rather than behaving as they are told, they may be called “resistant” or “stubborn.”

Developmental care uses patients’ BES history (or history of successful patterns) to create satisfying BE activities. A few examples from Carol’s story illustrate this process. The first part of her story reveals all the BES patterns that gave her pleasure before her illness, like piano playing.

Fulfilling activities within limitations

Pleasure from piano playing began before grade school and grew throughout Carol’s life. In her adult years she called it her “therapy” when she was feeling anxious, discouraged, or fatigued. She excitedly attended concerts by famed pianists beginning in the sixth grade. She collected and listened to recordings of great pianists and played duets with her mother. She taught each of her sons to play the piano and enjoyed duets with the one who chose that as a lifelong hobby.

As Carol’s arm and hand control limitations grew we tried different ways of continuing her piano-playing pleasure. Sitting at the piano, she could play notes by herself, or someone beside her could guide her hands to play a little tune. Sometimes her duet-playing son would play part of a melody with his left hand and, holding her hand, help her play with him. A son gave her a small electronic keyboard on which she could play notes or cause the keyboard to play a familiar tune by lightly touching one key. We played piano or choral music during wakeup time each morning. Family or visitors would play for her while she sat in her wheelchair watching and listening. Sometimes after dinner, Carol joined our family in singing around the piano, just singing the notes when she couldn’t sing words.

We searched TV schedules for shows featuring pianists and included movies featuring pianists in our afternoon movie schedule. One selection illustrated the influence of positive emotions in creating more powerful memories of events. During high school Carol attended a concert by Jose Iturbi. She loved it and got in line for his signature. She spent 15 minutes with him in his dressing room, overwhelmed by his attention and charm. Later, he was featured in four movies. Six decades later, Carol remembered him and watched all his movies more than once with delight.

Enjoying life despite limitations

It is difficult to describe the pleasure one feels in watching a person who is physically almost helpless like Carol laughing and enjoying life despite their limitations! I hope these examples convince you that people like her—people with incurable conditions that we now confine in nursing homes—still have capabilities that can be used to help them live with satisfaction and pleasure if our society decides to make it possible.

 

Donald H. Ford, PhD, earned doctorate degrees in mathematics and psychology from Kansas State and Pennsylvania State Universities. Creator of the Health and Human Development College at Penn State, he then served as dean before returning to teaching, writing, and scholarship. More information on a developmental model of eldercare is available in his book, Carol’s Alzheimer’s Journey: Treat Them Like a Person, Not a Patient.