Alzheimer's disease and related disorders (ADRD) are common chronic conditions causing progressive irreversible deterioration to the cerebral cortex. ADRD affects over 4 million Americans, slowly robbing its victims of abilities to remember, communicate, make judgments, function in both instrumental and basic activities of daily living, tolerate stress, and interact socially.1,2 In addition, more than 70% suffer from behavioral complications including depression, wandering, relentless pacing, agitation, aggression, hallucinations, paranoid ideation, and alterations in sleep patterns.3,4 These behaviors complicate care provision as patients fail to respond to traditional care measures and restorative approaches in a manner expected for lucid clients. Moreover, some traditional approaches may increase fear and/or frustration, worsening agitated and dysfunctional behaviors.
Frustrated by problems such as agitation or sleeplessness, families and care facilities often turn to physicians for medications to ameliorate behaviors. Medications, however, are of limited benefit in managing behavioral symptoms other than those associated with psychosis and, because of their side effects, should be used as a secondary management approach.5 Maletta5 lists 23 common behavior problems not amenable to pharmacotherapeutic management including inappropriate verbalizations, wandering, rummaging, pica, hypersexuality, self-abuse, and repetitive questioning.
Considering the heterogeneity of problem behaviors and the wide variety of nonpharmacological interventions described in the literature, a conceptual framework is needed to provide a method for rapid assessment of behavioral problems, a repertoire of environmental strategies catalogued to meet the specific need at the time of the problem, and evaluate the success of interventions. This article describes a conceptual framework, the Progressively Lowered Stress Threshold (PLST) model, designed to help families and health care professionals manage behavioral symptoms in Alzheimer's disease and related disorders using environmental modifications and minimal mood-controlling medications.
Symptom Clusters Associated With Progressive Dementing Illness
Mr Jones was referred to your practice by his primary physician. A 78-year-old retired farmer, he had a 5-year history of progressive degenerative dementia. Over the past 6 months, he had become progressively more agitated late in the day. For 2 weeks prior to the appointment, he was rising at 3:00 AM, got dressed, and wandered outside to "feed the livestock." His wife, the primary caregiver, was exhausted and tearful, stating she was considering nursing home placement. During the first visit to your office in the morning, Mr Jones was welldressed, calm, and not acutely psychotic. He denied any knowledge of these episodes.
PROGRESSIVELY LOWERED STRESS THRESHOLD
Initially developed to assist family caregivers to organize observations and make care decisions, the Progressively Lowered Stress Threshold (PLST) model has been used to plan and evaluate care in every setting where people with ADRD are found.6"10 Derived using psychological theories of stress, adaptation, and coping, in addition to behavioral and physiological research of Alzheimer's disease, the PLST model divides symptoms of dementing illness into four groups: (1) cognitive or intellectual losses; (2) affective or personality changes; (3) conative or planning losses that cause a predictable decline in ability to perform functional activities; and (4) loss of the stress threshold causing dysfunctional behavior such as agitation or catastrophic reactions. Table 1 lists symptoms associated with each symptom cluster.
Stages of Functional Loss Associated With Dementing Illness
Throughout ADRD, patients demonstrate several symptoms from each symptom cluster that initially are mild or intermittent, becoming worse and more constant with disease progression. Patient symptoms and functional abilities can be evaluated by assigning one of four stages in the disease continuum, helping plan care that incorporates the patient's premorbid lifestyle and interests, and evaluating care outcomes using the presence of stressrelated behavior.8 Table 2 describes the functional losses, in general order of occurrence, associated with four stages of dementing illness. Language losses may tend to confound presentation on the continuum as they may present early in some patients.
The PLST model hypothesizes that symptoms in the fourth cluster are related to a progressive loss of the person's ability to cope. When excessive stress is present, the patient becomes increasingly anxious, usually exhibiting increased psychomotor behavior such as restlessness. Frequently, the patient will attempt to leave the stressful situation or express the desire to go home or be alone.
If the stress threshold is exceeded, a dysfunctional episode (also called a catastrophic event) results, producing one or more behaviors in the fourth cluster. During this episode, the patient becomes inaccessible and little communication occurs between patient and caregiver, the patient is generally fearful, and has temporarily decompensated with worsened ability to think and function. These reactions may occur during, immediately after, or a day or 2 after a particular causative event. Like all ADRD symptoms, dysfunctional behaviors are rare and/or mild in early disease, yet increase in prevalence and intensity with disease progression. The Figure demonstrates the concept of a catastrophic event.
The spiral on the Figure demonstrates an important concept. Dysfunctional episodes may become cyclic if interventions are not undertaken to provide relief For example, a patient who becomes agitated at night will develop a continuing pattern of nighttime sleeplessness if activities are increased during the day. Depriving the patient of daytime rest prevents stress levels from reaching baseline.
The PLST model identifies six common triggers that tend to produce dysfunctional episodes and sudden functional decline also known as "excess disability": (1) fatigue; (2) change of environment, routine, or caregiver; (3) misleading stimuli or inappropriate stimulus levels; (4) affective responses to perceptions of loss; (5) internal or external demands that exceed functional capacity; and (6) physical Stressors, such as pain, discomfort, infection, acute illness, and depression producing concomitant delirium.2'6'8 The triggers provide a guide for planning care and a quick assessment measure for causative factors once a dysfunctional episode or sudden functional loss has occurred.
Very simply, planning care involves teaching caregivers symptom presentation, recognition of dysfunctional behaviors, compensatory techniques to minimize the presence of the six triggers, and how to use the patient's preferred routine to maintain as safe and satisfying a lifestyle as possible. When a secondary behavioral response occurs, caregivers review for the presence of triggers and modify the environment in accordance with the offending factors with the least disruption to family members. A more comprehensive description of the PLST model is available elsewhere.6-9
Describing their daily routine, Mrs Jones depicted a highly active lifestyle. The couple rise at 6:00 AM, eat breakfast, and read the morning paper. Mrs Jones then asks him questions about what he has read to enhance his retention. Following their morning routine, they attend a coffee klatch and activities at the senior center, a bustling busy place. They have lunch at a large congregate mealsite and visit with friends. In the afternoon, Mrs Jones had stopped his nap as she felt he might sleep better at night. She had him paint windows to keep busy. About 4:30 PM, Mr Jones became agitated, pacing the house and wanting to go home. Mrs Jones usually took him for a ride for an hour which had, until now, calmed him. The couple prepared and ate supper, watched television, and Mr Jones went to bed at 8:00 PM. Mrs Jones has tried to keep him up later, but he becomes combative when kept up.
Figure. Dysfunctional behavior. The spiral indicates that dysfunctional episodes may become cyclic if interventions do not achieve relief.
The situation reached crisis proportion 2 weeks ago when the couple took a 3-day senior citizens' bus trip. Throughout the trip, Mr Jones insisted he wanted to be taken home. He slept less than an hour each night, attempting to leave the hotel room repeatedly, and insisting Mrs Jones was not his wife. Upon returning home, he has continued to be up repeatedly throughout the night.
PLANNING CARE USING PLST
When planning care using the PLST model, several areas need to be assessed in addition to the diagnostic evaluation. The goal of assessment in planning care is to anticipate what will precipitate secondary behavioral symptoms, know which behavior the patient will exhibit, and prevent secondary symptoms whenever possible.
Knowledge of premorbid lifestyle is critically important. Educational level, career, pastimes, level of physical activity, and lifestyle prior to illness help to determine changes in personality and function and predict how the patient might respond with ADRD. Premorbid level of comfort with socialization, coping styles, and general affective states provide insight into the patient's and family's feelings of control, decision-making processes, and often their sense of humor.11'12 Premorbid personality strengths can often be used in helping the patient and family with difficult situations and may be predictive in determining causes or potential symptoms of catastrophic episodes. For example, patients who led highly active lifestyles are more likely to wander than those who were sedentary.13 Assessing insight is critical. Patients who are able to discuss their disease often are aware of risks and tend to have fewer paranoid ideas.14
A second level of assessment is undertaken to describe patient behaviors, including mood, symptoms, and level of activity at baseline. Baseline assessment includes patient interaction with family, staff, and the physician; usual daily routine; and assessment for depression. These data are used for comparison during decompensation. In examining baseline behavior, several characteristics are particularly important:
2. Insight into disability
4. Spatial-perceptual abilities
5. The patient's best time of day
6. Response time
7. How much distraction the patient is able to manage
8. Usual level of function
9. Language abilities: receptive, expressive, reading comprehension9
Due to the generally straightforward pattern of functional decline, the physician will find comparing the level of function with Table 2 helpful in determining approximate levels of activities and types of environmental cueing appropriate for each level.11 Moreover, a sudden decrease in usual functional level generally indicates an acute illness or the presence of excess disability.
Questions should be asked about the presence and character of catastrophic, agitated, and/or dysfunctional episodes.8'15 The person with ADRD will generally exhibit the same behavior during each dysfunctional episode. For example, a patient might tend to elope repeatedly. These episodes are less frightening for the caregiver who has planned for them in advance. The family should be asked to describe how they manage these episodes. Moreover, dysfunctional episodes are usually preceded by a period of noticeable anxiety.7 Caregivers who are able to identify anxious behavior can often intervene early to prevent the dysfunctional episode. Interview families separately from the patient when asking these questions, as many will avoid discussing behavior problems in the patient's presence for fear of provoking anger or hurting the patient's feelings.
A physical examination rules out the presence of physical Stressors causing acute confusional syndrome or delirium. Constipation, urinary tract infections or retention, arthritic pain, dyspnea, cardiac arrhythmias, pedal edema, and metabolic illnesses are a few of the conditions that present as increased confusion or agitation.2,6,7
Be aware of safety concerns. Common problems include whether the patient is eloping, falling, combative, or sexually aggressive. In addition, patients with impaired cognition are at highest risk for dependent adult abuse.16 Know state laws regarding reporting adult abuse and unsafe drivers. Discuss safety concerns with the patient and family members, and recommend consultative services to provide additional assessment and support. Know if a decision-maker such as a guardian has been appointed or if any agreement such as a durable power of attorney or living will was signed. Whenever possible, determine the patient's and family's values regarding treatment of eating disorders, acute illnesses, and terminal care.
As previously stated, care is based on maximizing a safe functional level while controlling for triggers that precipitate dysfunctional episodes. Activities and daily tasks are developed over the lifespan incorporating culture, habits, values, manners, preferences, and occupation.11'12 The daily routine should reflect premorbid lifestyle and interests; however, the routine should be simplified as the disease progresses. 8,11-12 The following description of care planning assumes a comprehensive assessment was conducted and has a well-formed understanding of the client's routine and interests prior to disease onset.
Establishing a Routine
The symptom cluster labeled "conative losses" involves an inability to plan and sequence activities that require thought. When challenged by a task, the patient may be able to describe what he or she wants to do or how to accomplish the task, but is unable to put components of the task into the proper order. This may be interpreted as laziness or attempts to manipulate caregivers by those who do not understand the concept. This results in frustration and increased stress for both the patient and caregiver. To worsen matters, the more the patient thinks about how to accomplish the activity, the more difficult the task becomes.
Patients compensate for conative losses naturally by developing a daily routine that becomes automatic and, therefore, requires little thought. Anything that disrupts the sequence of their daily routine causes fear, frustration, anger, and dysfunctional episodes. Patients threatened by changes in routine will often refuse to participate in even the most pleasurable activities for fear of losing control and being rendered helpless.
Disruption of routine may occur in three ways, as detailed below.
Change in the sequence of daily activities. A structured routine should be established. Writing down the sequence for all caregivers involved helps to maintain continuity. If the patient requests changes in routine or is not adversely affected, changes of pace are desirable. Most patients experience difficulties when family members assume changes of pace will be good for the patient without including the patient in the planning process and/or ignoring the patient's protests concerning change.15
Changes in environment. Changes in the environment produce the same effects as change in routine. The patient must give conscious thought to task performance that produces excess disability. While some changes are obvious, such as the patient who travels or is admitted to a nursing home, others are more subtle, such as remodeling, redecorating, or decorating for a holiday. Patients in middisease often refuse to leave home, become belligerent when furniture is moved, or insist on returning home when visiting the home of an adult child. Caregivers should think twice about remodeling and redecorating as the changes can produce days or weeks of dysfunctional behavior.15
Another source of stress is travel. Guidelines to minimize the impact of travel are available on request.15
The most unsettling changes are encountered with holidays. Holidays, especially in institutional settings, mean both decorations and extra people in the environment. Not only may family members return home for holiday visits, but schools and civic and religious groups may provide parties and programs designed to assist residents with celebrating. While staff, patients/residents, and visitors may all benefit from holiday decorations, care should be taken to keep them simple and safe. For example, on an Alzheimer's unit in a nursing home, the residents requested a small Christmas tree with a nativity beneath. Adult carolers were allowed on the unit early in the day for 10 to 15 minutes and holiday parties were small and carefully planned. No increase in problem behaviors was noted during the holiday season, yet residents were able to celebrate and reminisce.10
Change of caregiver. It is generally impossible to maintain a single caregiver throughout the dementing illness. In the home setting, family and formal respite services should be used to provide the caregiver with needed rest. However, it is important to remember the potential for excess disability, instructing new caregivers to follow the patient's written routine.
Fatigue is probably the most common factor in producing dysfunctional or catastrophic episodes. Most episodes occur late in the day, especially after taxing activities. Early in the dementing illness, patients are taught to prevent fatigue by taking breaks where they rest quietly twice daily. If the patient resists resting, quiet time can be spent in an activity such as reading, listening to music, or performing a quiet task such as folding laundry. Regular physical exercise decreases fatigue and helps to ensure a diurnal rhythm.15
As the dementia progresses, patients may nap for one or both rest periods. When napping, it is suggested that patients use an easy chair or recliner to minimize day/night disorientation. Often, caregivers try to eliminate rest periods if the patient wakens confused during the night. Eliminating daytime rests to promote night sleep is a common misconception and will often worsen night wakening.
Shorter time allotments for activities need to be planned as the disease worsens. Patients and caregivers quickly identify comfortable levels of activities as most patients will attempt to leave or lose interest as fatigue sets in. Caregivers are reminded not to encourage patients to participate in activities once they have requested or tried to leave. For example, a patient may request to leave a restaurant or social gathering, but wellmeaning caregivers persuade him or her to stay until they are finished. The additional time spent reluctantly at the activity may cause the patient's stress level to exceed the stress threshold, producing a dysfunctional episode up to 24 hours later.
High stress or fatiguing activities should be planned for the patient's best time of day, usually the morning. This assures maximum cooperation from the patient. A period of rest should follow activities that cause fatigue. In the acute care setting, this means assuring rest periods after morning care, tests, therapies, and meals. Although this may cause scheduling problems, providing adequate rest often assures a cooperative patient during procedures.
Managing Inappropriate Levels of Stimuli
As many dementing illnesses progress, patients experience increased alterations in perception. Patients and families often report difficulties with visual interpretation, especially groups of people and television, and coping with noise. Stimulus at inappropriate levels is problematic in three ways: overstimulation, understimulation, and misleading stimuli.
Overstimulation usually occurs in combination with fatigue and change. The patient is subjected to what is perceived to be a crowd and/or a noisy area such as the main dining room of a nursing home, a shopping mall, or a buffet-style restaurant.10 Many patients will experience anxiety and try to leave, while others try to cope and become anxious late in the day. Nursing homes report dramatic decreases in agitation and night wakening when residents with ADRD have dining facilities that are modified to reduce noise and group size.10,18
Caregivers need to be alert to situations in which problems with stimulus levels might arise. When in settings with groups of 10 or more people, patients with ADRD should be asked about their comfort level and/or observed for symptoms of anxiety. This might include loss of eye contact, increased psychomotor activity, noisy behavior, or attempts to leave the area.e Activities with young children might overstimulate some patients, causing them to become angry or catastrophic. Patients should be protected from prolonged exposure to high-stimulus situations. Often, this is simply a matter of noticing when the patient chooses to leave and analyzing the environment at the time.15
Understimulation usually results from overzealous attempts to create a low-stimulus environment. Walls, floors, and surroundings are monochromatic and have few decorations. Activities are inadequate to help residents feel satisfied. This results in behavior that is often troubling.19 In one nursing home, staff on the low-stimulus unit complained of residents becoming agitated and tearing down drapes. Everything in the unit had been decorated in the same pale blue shade. Activities were programmed for one-half hour, twice each day. Staff was amazed one morning to find six residents moving the refrigerator from the kitchen down the hall. Another day, the residents took the fire extinguisher. When activity levels were increased and decorations added, the troublesome behaviors ceased.
Misleading stimuli are assessed by evaluating the patient's appraisal of perceptions that cannot be attributed to the environment. Common examples include what appear to be hallucinations. Patients complain of "children in the house," often mistaking television or family pictures for live people. "People upstairs" is a common misinterpretation of radio programs. Patients may avoid using the bathroom, voiding or defecating in a corner or wastebasket, thinking their own mirror image represents someone using the restroom. Misleading stimuli should be eliminated when they frighten the patient or cause untoward responses. Moreover, removing the source of the misperception may prevent having to prescribe antipsychotic medications. However, in some cases, patients enjoy talking to their perceived friend in a mirror or picture and become angry when the stimulus is removed.
Minimizing Affective Responses to Perceived Losses
People with ADRD may become depressed, upset, angry, may act out, or obsess at the loss of a cherished activity. Common examples include driving, managing family finances, employment, living alone, and activities that enhance feelings of self-esteem. Two management strategies are recommended.
First, the family and physician should discuss the loss with the patient, allowing for periods of anger and self-expression. People with ADRD grieve in similar ways to their peers. Assume the responsibility for the difficult decision and discuss the loss in terms of the disease. Carrón reports that patients who are not told the facts of their disease tend to develop psychotic symptoms - especially paranoid ideas.14 Assuring patients' choices in daily routine prevents a sense of loss and anger.20
Second, lost activities should be replaced with similar simplified activities such as a personal work space at home or, if that is not possible, with additional activities that provide for enhanced self-esteem. Examples might include having a patient assist with chores or cooking activities. Families should be instructed to accept the patient's performance of an activity despite less-than-perfect results. Use of fantasy activities, such as a driving simulation, have also been helpful. An occupational therapy consultation is invaluable in helping caregivers to think creatively about substitute activities.20
When patients attempt to achieve functions that exceed their cognitive capacity, frustration, fear, anger, and anguish often result. If the pressure to achieve is allowed to continue, catastrophic or dysfunctional behavior may result. Examples may include the impaired person who continues to try to work despite an inability to perform job tasks; a caregiver who insists that the patient read the newspaper, quizzing the patient on news stories; or caregivers who insist that patients remember the day, location of their rooms, or that they reside in a nursing home.
Reducing excessive demand is accomplished by assessing the patient's level of function and communication skills, and planning care and activities at that level. Use of occupational therapy for task analysis can assist nursing staff with planning restorative care to maximize functional potential. Occupational therapy, activity therapy, group therapies, validation, therapeutic touch, socialization groups, and music therapy have all been found to have short-term positive outcomes in enhancing self-esteem and decreasing expressions of frustration.20
Physical triggers may be categorized as those things that affect the body by producing acute illness, infection, discomfort, pain, altered consciousness, or alterations in body chemistry. Some of the more common physical triggers include caffeine, acute or chronic pain, distended bladder or bowels, urinary tract infections, dehydration, colds, and medications.
Urinary tract infection is a common cause of increased confusion, agitation, and general malaise occurring prior to the onset of urinary symptoms. With the onset of prolonged dysfunctional episodes or excess disability, the caregivers should observe for dark, cloudy, or foul-smelling urine and should obtain a cleancatch specimen for culture and sensitivity.
Caregivers must be acutely aware of the potential for dysfunctional episodes due to physical triggers in order to guard against them. For example, many patients with ADRD have limited fluid intake. Offering fluids every 1 to 2 hours may help to prevent dehydration or urinary tract infections. Observing bowel habits for constipation and ensuring adequate fiber and fluid intake is often effective in preventing dysfunctional episodes.
One problematic area is pain and discomfort. Many patients with ADRD are elderly and have painful concomitant disorders such as degenerative joint disease. McCaffery and Beebe define pain as whatever the patient says it is.21 However, many patients with ADRD are unable to complain about pain and, particularly if the pain is intermittent, will deny it when questioned. Marzinski found that nonverbal demented patients were routinely denied pain medications despite having conditions that would produce moderate to severe discomfort.22 The potential for pain and discomfort should be the first physical Stressor evaluated when patients present with problem behavior. Many clinicians will medicate for pain before trying antipsychotics or tranquilizers for agitation, yelling, and acting out.
THE DYSFUNCTIONAL OR CATASTROPHIC EPISODE
Dysfunctional episodes are transient changes characterized by cognitive and social inaccessibility.14 Cognitive inaccessibility is characterized by a sudden increase in alteration in thought processes; for example, not knowing where one is, not recognizing familiar faces, obsessing over a particular incident, or incoherence. Social inaccessibility means the patient is exhibiting behavior rendering him or her unable to communicate or respond appropriately to others. The patient who is socially inaccessible may be withdrawn, uncooperative, noisy, belligerent, combative, suspicious, or "difficult to manage."17
For family and staff teaching, the concept of a dysfunctional episode may be described as similar to a panic attack. The patient is usually frightened and has a sense of loss of control. Patients in the confused stage will often remember these episodes and are able to discuss their feelings of fear. Some patients fear that dysfunctional episodes are psychotic events and worry they are "going crazy." Therefore, in the confused stage, it is often reassuring to discuss the episode with the patient after the crisis has passed.
If caregivers treat dysfunctional episodes as fear, management becomes easier. The goals of management are to assure patient safety and reassure the patient of security. When a dysfunctional episode occurs, remove offending stimuli, turn off the television, move the patient to a familiar quiet area, provide a time out, and reassure the patient of safety. These interventions may be all that is needed to help the patient regain a sense of control and comfort.
In institutional settings, if the episode occurs when a staff member is present, that person becomes a Stressor, although he or she may not have contributed to the situation. The staff member should be replaced by another as quickly as possible and be encouraged not to take the episode personally. Care should be taken by staff to return a sense of control to the patient by addressing the patient by his or her surname, assuming a dependent position (sitting while the patient is standing), distracting the patient with cues that call for automatic social behavior ("Mrs Jones, would you like some tea now?" "Mr Smith, could you help me over here?"), and giving the patient adequate quiet time to regain composure.
Once an episode occurs, have staff document the antecedents, behavior observed, and consequences. In most cases, they will be able to determine causative factors by reviewing the six stressor groups. The environment or program may then be modified to better meet the individual patient's needs.
Evaluating the Jones' situation, you note multiple probable triggers to explain the catastrophic behavior:
* He gets no rest during the day.
* He is challenged beyond his capabilities with the quiz each morning.
* He spends a great deal of time in a noisy, crowded environment.
* The night wakening began with a trip which changed his environment and routine.
Prior to prescribing medications, you counsel Mrs Jones to try the following and to keep a daily record of the results:
1. Avoid all foods and beverages containing caffeine.
2. Provide a 30-minute rest period before attending the senior center. The rest period is a quiet time without television or other activities.
3. Stop the daily current events quizzes.
4. Shorten participation at the congregate mealsite or have lunch at a quieter place, such as a small restaurant without a buffet or at home.
5. Provide a 60- to 90-minute nap after lunch in the patient's easy chair.
6. Avoid overnight travel.
7. Provide a one-time dose of lorazepam 1 mg at bedtime the night of the visit to interrupt the cycle of night wakening.
The Joneses return to your clinic in 1 week. Mrs Jones is still sad, but looks rested. She reports her husband is now sleeping throughout the night. Her written log indicates he is also less agitated late in the day. She is no longer considering nursing home placement.
LIMITATIONS OF THE PLST MODEL
The PLST model is useful in planning and evaluating care for the majority of people with ADRD, including most with Alzheimer's disease, multi-infarct disease, Parkinson's disease, Creutzfeldt-Jakob disease, and normal pressure hydrocephalus. However, the PLST model has limited use for certain other dementing illnesses including Pick's disease, Korsakoffs psychosis, diffuse Lewy body syndrome, frontal lobe dementias, dementia pugilistica, certain toxic or drug-induced dementias, dementia in people with long histories of psychosis, and possibly AIDS encephalopathy. Moreover, limited success has been encountered with patients whose premorbid personality included violence as a normal coping mechanism. Rigorous diagnostic evaluations of patients with prolonged problematic behavioral symptoms are recommended to assist with development of an appropriate care plan.2,15
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Symptom Clusters Associated With Progressive Dementing Illness
Stages of Functional Loss Associated With Dementing Illness