Care Progression: A Model of Primary Care for Persons with Dementia & Their Caregivers

by Juergen H. A. Bludau, MD, CMD
Medical Director, Joseph L. Morse Geriatric Center &
Institute for Geriatric Research & Training
West Palm Beach, FL

Throughout medical school and my geriatric fellowship, the curriculum stated that my primary responsibility as a geriatrician was to manage the progression of diseases in the elderly, focusing on providing appropriate, patient-centered care.

However, as I've put this curriculum to work in the real world of geriatrics, I've found that there is much more to providing patient-centered care than simply treating the patient. Over the past 10 years, by working closely with geriatric nurse practitioners, I've determined that there must be a "parallel universe" to disease progression, especially when dealing with persons with Alzheimer's disease and their families.

In this parallel universe, the care plan no longer focuses solely on the patient; it also addresses the well being of the caregiver, as everyone travels along the continuum of the disease.

Thus, at the same time that long-term care providers deal with the impact of disease progression, we must--in the parallel universe--also concern ourselves with "care progression."

Care Team Concept

In collaboration with my colleague and co-author of the concept of care progression, Georgann Weissman, ARNP, I initially presented this model as a workshop during the first World Jewish Congress, held in Jerusalem in 1999.

The model of care progression begins with the interdisciplinary care team, which is comprised of the primary care provider (physician or nurse practitioner), nursing and social services staff, multiple subspecialists (based on the needs of the patient), occupational and physical therapists, clinical dietitians, and spiritual advisors. An interdisciplinary team approach provides adequate assessment and interventions specific to the medical, nursing, and psychosocial needs of the patient and their caregiver.

The care team is only complete, however, with the addition of the caregiver. As my colleague Ms. Weissman noted, "in many cases, especially in our current managed care environment, physicians do not have the time to devote to the caregivers of their patients with Alzheimer's disease. What we lose in this scenario is the caregiver's first-hand knowledge as it applies to the cognitive, functional, and behavioral changes." With the care team approach, each team member has expertise in a particular area, and can help to identify a patient or caregiver's need, follow up over time, and assist the person in assimilating new information.

The concept of care progression demands that the physician and care team accept a broader definition of the medical model--one that includes the changing needs of the caregiver. Until recently, the importance of the caregiver role in the treatment and care of patients with Alzheimer's disease or related dementias has been largely misunderstood, misrepresented, and generally overlooked by the health care system.

However, it is widely acknowledged that more than 70% of the 4 million Americans suffering with Dementia of Alzheimer's Type are being cared for at home by a spouse or adult child. The care progression model can address their needs as they evolve and change in response to the disease.

Disease Domains & Care Progression

For care progression to be successful, the care team must integrate the caregiver--who should be identified early in the process, especially in scenarios involving several family members--at the very beginning, even before a definitive diagnosis is made. That way, care progression can continue in the three domains of disease progression--cognition, function, and behavior. As the patient moves from one domain to another, the caregiver also moves across a continuum. By collaborating with the care team during this process, the caregiver takes on the role of patient monitor or advocate.

Cognition
In the early stage, the patient's first domain is affected. This generally includes a change in cognition that may result in subtle changes in family dynamics. Family members may become aware of memory loss, repetitive questions, depression, agnosia, or some perceptual changes. There is often denial, and a suggestion that these changes are due to the aging process, which may delay diagnosis.

Components of the first stage of care progression include providing education, assessing function, reviewing needs, and determining treatment options. Education involves giving information about the disease and its progression, as well as about care team members and their roles, responsibilities, and functions. It is up to the patient, caregiver, and care team members to assess function and identify treatment options together.

An example of the first stage of care progression is the case of Mr. and Mrs. Green and their adult daughter, Mrs. Simon. Mrs. Green is now a full-time resident here at the Joseph L. Morse Geriatric Center. However, when she entered the health care system, she was living independently with her husband.

Mrs. Simon is 50 years old, married, with two teenagers. Since it is important to integrate caregivers into the care team at the earliest point possible to establish trust and open communication, both the Greens and Mrs. Simon participate in the initial consultation.

In the initial discussion, as noted above, the focus is on education, assessment, and treatment, as care team members begin to take responsibility for the physical, emotional, and psychosocial maintenance of Mrs. Green, Mr. Green, and Mrs. Simon. The family identifies Mrs. Simon as best suited to take on the role of primary caregiver, and she is provided with some of the tools needed for this role, including available support groups. "Being an active participant in my mother's care made the whole experience far less emotionally debilitating for my family," Mrs. Simon noted, adding that being involved in the care progress process was "lifesaving."

Function
As the disease progresses into the second domain, the patient begins experiencing functional changes, increasingly losing the ability to complete activities of daily living. At this time, family members may observe a decrease in motor coordination and increased incidences of wandering and restlessness. Mental health issues also become evident, and may include episodes of confusion and paranoia.

In the "parallel universe" of care progression, the caregiver--in this case, Mrs. Simon--is also entering a second phase. The goal at this point is to empower her to become an informed decision-maker, better equipped to make decisions regarding home health care, day care, and other types of respite care.

Empowerment also allows a caregiver such as Mrs. Simon to retain a sense of control, thus reducing the pressure of feeling overwhelmed. It enables her to "step back," and begin to separate from the patient, both emotionally and physically.

The process also prepares her for the future separation of long-term care, and eventually death, as the disease enters the third domain.

As the sole female child, Mrs. Simon took on caregiving activities on behalf of her father and adult brother as her mother entered into the second domain of her illness. As her mother lost the ability to be the primary nurturer, Mrs. Simon felt it was up to her to fill the gap. She became "hostess, shopper, and confidante to my dad and brother" in addition to functioning as a wife and mother to her own family.

Care progression addresses these new responsibilities, as well as the role reversal between mother and daughter. Support groups become more important, since they nurture the caregiver and explore the evolution of the caregiver-patient relationship. They can also provide an outlet for the caregiver's feelings of anger, guilt, resentment, and abandonment.

Behavior
This "stepping back" process continues as the patient moves into the third and final domain which focuses on marked behavioral changes. By this stage, the patient may already be placed in a long-term care facility. The characteristics of this domain include intensity of the previous symptoms. The patient may lose their ability to speak; they may fail to recognize family, friends or even themselves. Behavioral changes may also include aggressive and combative behavior. Over the years, multiple chronic illnesses may have become evident. During this stage, the care team must continually reassess the patient to determine a significant decline or the possibility of an inter-current illness.

Closing Thoughts

In care progression, the informed and empowered caregiver is dealing with many issues. There may be feelings of anger regarding long-term care placement. The caregiver may feel isolated; previous social circles now consider the caregiver a "married single" among old friends. The caregiver must become a member of a new community, such as the nursing home community.

For the Simons this role developed into becoming active in fundraising and community service for the Center. For other caregivers it could be establishing friendships with other spouses and adult children over coffee in the lounge; still others find comfort and companionship through various support groups.

Health and quality patient care has always been an integral component of geriatric nursing. By developing the framework for care progression along this model, we reinforce our focus to provide a caring, comprehensive and cost effective approach to the health and illness continuum of both the patient and the caregiver. Paramount to these paradigms is the need to obtain positive patient and caregiver outcomes.

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