STANDARDIZED CARE PLAN: Managing Alzheimer’s Patients at Home

Abstract

Alzheimer’s disease and related disorders (ADRD) are chronic, common, costly, serious, and increasing health problems that affect about 3% of persons between the ages of 65–75; 18% of persons between the ages of 75–84; and 47% of those over age 85, or over 4 million Americans (Evans, 1989). Sixty percent of all dementias are reported to be of the Alzheimer’s type (Pajik, 1984). The course of the disease, while one of inexorable deterioration, is unpredictable, ranging anywhere from 1 to 20 years from diagnosis to death (average 8 to 10 years).

Early clinical manifestations include short-term memory impairment; sensory changes; losses in judgment, abstraction and logic; difficulties with reading comprehension; decreased socialization; subtle personality withdrawal; and losses of instrumental activities of daily living, such as driving, cleaning, and the ability to cook, manage money, or sustain a household.

Disease progression is most often accompanied by greater deficits in memory, language losses, and the progressive decline in self-care abilities, which leads to greater dependence on others (usually family members) for assistance with functional needs and emotional support. This reliance on others is complicated by disease-related personality alterations, which may enhance negative personality characteristics and cause the patient to become rigidly inflexible, reject changes in routine, lose the ability to express gratitude, and, in many cases, reject assistance from people other than the primary caregiver. Thus, it is not uncommon in the middle to late stages of the disease to find that the patient with ADRD becomes fearful of having the primary caregiver leave his/her sight, not even to allow privacy in the bathroom. In this situation, caregiving becomes a 24-hour-a-day job, complicated by the development of secondary episodic behavioral symptoms (discussed below), causing the patient with ADRD to become agitated, increasingly disoriented, and/or panicky.

Persons with dementia present many difficult care problems because of their progressive cognitive and physical deterioration. The severe cognitive changes so characteristic of dementia-causing illness are frequently accompanied by equally disturbing dysfunction in behavior or secondary symptoms. Between 70% and 90% of all persons with dementia-causing illness experience some form of these symptoms, often on a daily basis (Teri, 1989). A number of investigators have concluded that the symptoms of persons with dementia-causing illness that are most problematic for their caregivers are: agitation; waking at night confused and upset; the inability to recognize their home and/or caregiver; belligerent and angry outbursts; attempts to wander; hallucinations and delusions; combative episodes; incontinence; suspiciousness; and poor communication (Chenoweth, 1986; Gmeiner, 1987; Rabins, 1982). Other reported troublesome behaviors include: repetitive questions; wandering; embarrassing, dangerous and hostile behaviors; and difficulty with bathing and other instrumental activities of daily living (Grunow, 1987; Quayhagen, 1988).

When caregivers lack the behavioral skills to manage these secondary symptoms effectively, as well as more routine care problems, the disturbing behaviors often escalate, leading to increased confusion, agitation, and a “downward spiral” of impairment (Cohen-Mansfield, 1986). Behavioral problems and caregiver stress or illness constitute primary reasons for institutionalizing persons with ADRD (Ferris, 1987; Ryden, 1988; Zarit, 1986).

Nevertheless, somewhere between one half to two thirds of patients suffering from dementia-causing illnesses live at home (Rabins, 1984), and this trend is expected to continue because of projected cutbacks in services such as respite for this population. As the percentage of older Americans increases (from 11.3% in 1980 to a projected 21.6% by the year 2040), the number of cases of dementia-causing illnesses is expected to quintuple (Office of Technological Assessment, 1987). Due to the chronic, debilitating nature of this disease, it is estimated that at least 15 million additional family members also are affected (Cohen, 1986). Direct costs to society are estimated to be $38 billion annually, and total costs, which include indirect expenditures, exceed $88 billion every year. Impaired elderly are often placed in long-term care facilities (LTCFS) when family caregivers are either no longer available or are unable to continue home caregiving (Colerick, 1986).

The provision of in-home care costs an estimated $13 billion annually compared to an estimated $41 billion for nursing home costs (Young, 1990). These monetary estimates in no way reflect the human costs of this devastating disease, which represents an escalating health care problem that currently cannot be prevented nor its course reversed (Advisory Panel on Alzheimer’s Disease, 1989).

In light of the emotional trauma and expense associated with placement for both the ADRD victim and family, interventions that help family caregivers to prevent and/or manage behavioral symptoms, and perhaps delay institutionalization, are timely and significant (Figure 1).

FIGURE 1.

Standard In-Home Care Plan for Person With Alzheimer’s Disease or Related Disorder

FAMILY CAREGIVER STRESS

Caregivers of ADRD patients often experience significant emotional stress and extreme physical and financial burdens, in addition to apathy or hostility from the care recipient. Thus, caregivers may become “hidden patients” themselves, needing outside assistance and support to maintain their own health and functioning (National Institute on Aging, 1992). A number of converging trends suggest that demands on family caregivers will only continue. These trends include: increased longevity, geographic dispersion of the family, the need for many caregivers (especially women) to enter the work force, and changing patterns of marriage and child care (Advisory Panel on Alzheimer’s Disease, 1989). Thus, there is an ever-increasing number of “old-old” who require care from adult children and spouses, who themselves may be elderly and infirm. The increasing mobility of our society also diminishes access to family care. Increases in maternal age at the time of the birth of the first child means that more caregivers are experiencing “double dependency” caring for a parent and a child simultaneously, causing a phenomenon Brody (1985) has labeled “the Sandwich Generation.”

Although caring for a relative with dementia-causing illness is among the most difficult forms of family responsibility, caretakers often receive inadequate support and training for the task. Thus, they may become physically and emotionally exhausted, and/or face social deprivation and financial ruin (Buckwalter, in press). These caregivers identify multiple demands placed upon them, which culminate in increasing levels of stress (Bailie, 1988; Cohen, 1986; Given, 1988; Haley, 1987; Scott, 1986). Negative caregiver outcomes are most prominent in the areas of mental health and social impairment (Archbold, 1986; George, 1986; Haley, 1987; Zarit, 1980). Of particular note is the large number of methodologically rigorous studies citing caregiver depression as a major residual (Barusch, 1988; Cohen, 1988; Coppel, 1985; Eisdorfer, 1983; Fiore, 1983; Gallagher, 1989; Goldman 1984; Schultz, 1990), which has prompted the investigators to pay special attention to this variable. A growing number of studies (Anthony Bergstone, 1988; Fitting, 1986; Noelker, 1985; Pruncho, 1989) also provide evidence of gender differences in mental health responses to the caretaking task, suggesting that women caretakers are more adversely affected than their male counterparts.

THEORETICAL FRAMEWORK

The proposed care plan is both theoretically and empirically driven. The overall theoretical framework for this research is person-environment fit, a concept that is derived from systems theory and emphasizes the interrelatedness of systems and their subsystems (Wolanin, 1981). Dysfunctional, socially inaccessible (Silver-stone, 1983) and inappropriate behavior of patients with dementia can be more easily understood in terms of person-environment fit, in that impairment of ego-sensory, perceptual and cognitive processes affect overall ability to interact successfully with the environment (Roberts, 1988). The perspective of person-environment fit also is helpful in designing environmental interventions that are therapeutic, focusing on restitution, compensation, and accommodation of impaired functions and dysfunctional behaviors.

For the cognitively impaired, accommodation may range from passive acceptance to active readjustment. Active readjustment for patients with dementia often is expressed in behaviors that are considered dysfunctional, such as wandering (Figure 2) or refusal to perform self-care activities. Due to cognitive impairment, the patient with dementia exhibits behaviors that indicate disordered person-environment interaction. These behaviors include inability to recognize once familiar objects, the purpose of the objects and how to use them, inability to recognize family and friends, repetitive behaviors, catastrophic reactions, and situationally-inappropriate behaviors (Roberts, 1988). Therapeutic interventions focus on facilitating accommodation by modifying the environment to reduce demands on the resources of the person with dementia. Behavioral interventions, based the patient’s dysfunctionally or socially inappropriate behavior as meaningful communication, also have value, if the intervention does not increase the demand stress of the environment above the patient’s tolerance threshold, as elaborated in the Progressively Lowered Stress Threshold model.

FIGURE 2.

Wandering

PROGRESSIVELY LOWERED STRESS THRESHOLD (PLST) MODEL

Hall and Buckwalter’s Progressively Lowered Stress Threshold (PLST) model (Hall, 1987) proposes that persons with dementia-causing illness need environmental demands modified because of their declining cognitive and functional abilities. The PLST model describes the increasing inability of persons with dementia-causing illness to cope with stress due to progressive cerebral pathology and associated cognitive decline (Hall, 1987).

Both environmental and internal stressors are demands that cause the person with dementia to become anxious and agitated. If the stressful stimuli are allowed to continue or increase, behavior becomes increasingly dysfunctional, often catastrophic. The PLST model suggests that reducing stress by modifying environmental demands promotes functionally-adaptive behavior. For the purposes of this paper, the model has been modified to include the notion of controlled or managed environmental stimuli that are tailored specifically to the individual needs of caregivers in the home/community setting.

The PLST model is embedded in an orientation toward comprehensive care of the cognitively-impaired older adult and his/her family (Buckwaiter, 1988). In keeping with the model, caring for persons with dementia in the community requires attention to the following elements (Buckwalter, 1989; Hall, 1987; Hall, 1988):

• Providing ongoing education for patients and families about the disease process.

• Assisting the patient and caregivers with the development of routines and strategies that enhance appropriate behavior patterns.

• Helping patient and caregivers simplify daily care tasks, such as bathing, toileting, and dressing.

• Assisting with problem-solving strategies over the course of the illness as behavior and functional abilities change.

• Locating resources and developing support networks.

• Providing ongoing emotional support and counseling for patients, caregivers, and other network members.

• Assuming a case-management role of advocacy, service coordination and liaison with the primary physician.

In order to assist caregivers in understanding patient behaviors and in planning care, the PLST model addresses three dimensions and their interactions. The dimensions are clusters of symptoms in patients, levels of patient behaviors, and staging of the disease. The symptoms of dementia-causing illnesses are conceptualized to cluster into four groups:

• Intellectual losses.

• Affective or personality losses.

• Cognitive or planning losses.

• Progressively lowered stress threshold (PLST). PLST may lead to catastrophic behavior; violent, agitated or anxious behavior, purposeful wandering; confused or agitated night awakening; noisy behavior; purposeless behavior; and compulsive, repetitive behavior and verbalizations.

The second dimension—levels of patient behaviors—includes:

• Baseline or normative behavior, which is a calm state incorporating the intellectual, affective, and cognitive losses. Clients exhibiting baseline behavior are able to function within the limits of their neurologic capacity.

• Anxious behavior occurs when the adult suffering from dementia experiences stress. Caregivers are still able to communicate with the patient, but if the stress is allowed to continue or increase, the next level of behavior ensues.

• Dysfunctional or catastrophic behavior results when the patient is unable to communicate effectively and responds to the environment inappropriately. Dysfunctional behavior usually appears suddenly and lasts a short time. Episodes increase as fatigue and stress increase throughout the day.

The levels of behavior and symptoms are related to the progression or stage of the illness. Baseline behaviors diminish as the disease progresses, and anxious and dysfunctional behaviors occur more frequently. The stress threshold decreases throughout the disease until the patient reaches the end stage.

According to the PLST model, in patients with ADRD, there are six main groups of stressors that adversely affect behavioral symptoms. These include: fatigue; change; demands to achieve beyond capabilities; multiple and competing stimuli; affective responses to perception of losses; and physical stressors, such as illness, adverse medication interactions, or pain.

Four basic assumptions underlie the PLST model and shape care using this approach:

• The patient suffering from dementia exists in a 24-hour continuum. If the patient has a problem during the night, changes need to be implemented during the day.

• The confused and agitated patient is uncomfortable and frightened, and has a right to be comfortable.

• All behavior is rooted and has meaning. Even catastrophic behaviors may have a detectable, modifiable cause.

• All humans need some control over their person and environment, and need to be treated with unconditional positive regard.

CARE PLANNING BASED ON THE PLST MODEL

The care plan (Figure 1) targets the most disturbing behavioral symptoms associated with dementia and can be controlled by strategies that flow logically from the PLST model (Hall, 1987; Hall, 1988). A major objective of the care plan is to improve the family’s competence in managing problematic behavioral symptoms, which may decrease caregiver stress, delay institutionalization of the person with ADRD, and possibly reduce the costs of ADRD care.

According to the model, reduction of environmental stress through caregiver training and care planning will result in a slower rate of deterioration of the ADRD patient’s physical and behavioral functions. Specifically, because persons with dementia have less demand on their cognitive processing abilities in an environment with reduced sensory stimuli, they are expected to use their remaining cognitive abilities more effectively. In turn, this should result in greater retention of functional abilities, such as dressing, grooming, toileting, and eating (a slower rate of decline). Likewise, the diminished stress on cognitive processing is hypothesized to result in reduced anxiety and catastrophic behaviors. Thus, less anxious patients are expected to wander less, engage in more interactions with family, and require fewer chemical and physical restraints.

SUMMARY

Management strategies for persons with ADRD at home are necessary in order to provide caregivers with concrete interventions that will assist in caring for the ADRD patient. With systematic interventions, physical and behavioral symptoms should decline more slowly, and the ADRD patient will be more manageable at home.

IMPLICATIONS FOR NURSES

Patient teaching for in-home caregivers of ADRD patients is accomplished in a variety of settings. Nurses in acute care settings, physicians’ offices, and public health nurses must provide a comprehensive overview of behavioral management techniques within a relatively brief time span, generally an hour.

The PLST care plan provides a comprehensive, yet simple framework allowing nurses maximum flexibility to individualize care to meet the in-home caregivers’ preferences and needs for autonomy. Caregivers express satisfaction at being able to plan care based on prior understanding of the patient’s personality and new knowledge of ADRD-related needs. The PLST care plan assists nurses to help caregivers rapidly identify potential sources of problem behavior and select interventions appropriate to the causative factors. Moreover, the care plan establishes a common language between nurses and caregivers when discussing patient needs and evaluating outcomes.

In addition, nurses using the PLST care plan recognize a systematic approach to finding alternatives to chemical restraints when working with ADRD patients with secondary symptoms such as wandering. Within the six categories of stressors, suggestions for activities, daily structure, rest periods, minimizing inappropriate stimuli, and maintaining comfort provide a wide variety of approaches before using chemical approaches.

The PLST care plan provides nurses with insight into behavior of ADRD patients that appear to be random and unmanageable. This can be applied to new, more diverse nursing settings, such as adult day care and group homes.

Caretakers often receive inadequate support and training for the task.

The proposed care plan is both theoretically and empirically driven.

KEYPOINTS.

1. Family-provided care of members with Alzheimer’s disease and related disorders (ADRD) is complicated by the presence of secondary behavioral symptoms, such as agitation, that lead to caregiver depression, burden, and breakdown.

2. Caregiver education to manage secondary symptoms in ADRD can be simplified by using a theoretical framework of person-environment fit, providing a selection of interventions to modify the environment to reduce demand on the dwindling resources of the demented person.

3. The Progressive Lowered Stress Threshold (PLST) model identifies six areas of stress for persons with ADRD fatigue, change of caregiver, environment or routine, demands to achieve beyond capability, multiple and competing stimuli, affective response to perceived losses, and physical stressors.