In the absence of a standardized technique for reliably and comprehensively describing changes in behavioral disturbances of dementia, the Behavioral Pathology Committee of the Consortium to Establish a Registry for Alzheimer's Disease (CERAD) sought to develop a scale that could be used to evaluate a wide range of psychopathologic signs and symptoms in patients with differing severity of dementia. The goal of the committee was to develop a scale composed of well-anchored, homogeneously scaled items that could be administered by interviewers without extensive psychiatric training.

This discussion must begin with a consideration of the assumptions in the mandate given to the National Institute on Aging (NIA) from the U.S. Senate Appropriations Committee. The Senate report states that the broad objectives of the plan to be developed by the NIA are “to slow the rate of deterioration from Alzheimer's by 5 years during the next 5 years, and by 10 years within 10 years.”

Recent biological and genetic studies focused on the causes and treatment of Alzheimer's disease (AD) have provided findings that are encouraging. These findings have raised the hopes of family members, as well as those of the research community, that the cause and/or treatment of AD will emerge in the near future. Despite these hopes, however, families and the research community acknowledge the reality that, for thousands, these discoveries will come too late. Even as they continue to hope, families must contend with the difficult tasks of caring for persons with AD. This care can be intensive, extensive, and exhausting. Because families deal with the day-to-day reality of caring for persons who are progressively deteriorating, there is a need to focus on the social and behavioral aspects of AD.

Although Alzheimer's original description of the dementing disorder that bears his name emphasized the prominence of troublesome and disruptive behaviors, a systematic investigation of behavioral disturbances of dementia did not begin in earnest until the 1980s. At that time, as the neuropathologic identity of presenile Alzheimer's disease and late-onset “senile dementia” was recognized, the redefinition of Alzheimer's disease abruptly increased the number of patients diagnosed with this condition. Physicians and other medical personnel working with Alzheimer's disease patients recognized both the importance of abnormal behaviors in this now large patient population and the need to describe, classify, and quantify these behaviors.

In clinical practice, the behavioral disturbances seen in patients with dementia are helpful in determining disease severity and the need for support care. In patients with Alzheimer's disease, the early appearance of behavioral symptoms is associated with faster disease progression. Until recently, pharmaceutical companies have had little interest in developing drugs to treat behavioral disturbances, because the U.S. Food and Drug Administration, in the “Guidelines for the Clinical Evaluation of Antidementia Drugs” dated November 8, 1990, held that drugs acting on noncognitive symptoms associated with Alzheimer's disease would be “pseudospecific” (i.e., not targeted to the core cognitive domains of Alzheimer's disease). As a result, few measurement scales were specifically developed to assess functional autonomy and behavior in patients with Alzheimer's disease within time frames of 3 to 6 months, the typical length of double-blind, placebo-controlled studies. Many of the existing scales included heterogeneous items relevant to cognition, functional autonomy, somatic symptoms, and psychiatric problems. The Dementia Behavior Disturbance (DBD) scale was developed in the late 1980s, a time when the importance of behavioral symptoms in dementia was increasingly being recognized. Recent harmonization efforts for the development of antidementia drugs have further emphasized the clinical importance of noncognitive symptoms in dementia.

As the 21st century approaches, ever-increasing life expectancy and longevity bring into awareness the concerns of an aging population. One of these concerns pertains to the care of patients with Alzheimer's disease (AD). The cause of AD continues to baffle science in spite of its high research priority in recent years. However, while we wait for science to discover both causative and curative factors, the illness continues to take its toll, placing the burden of care on the families of those stricken. The increased responsibility for care of dementia patients by families in the community calls for interventions that reduce family stress and provide support for caregivers who manage the behavioral manifestations of the dementia.

The behavioral symptoms seen in patients with dementia are diverse, ranging from agitation to hallucinations and paranoid delusions. Many patients with dementia have affective disturbances, including depressed mood. To provide a means of assessing the severity of depression and mood changes in demented patients, the authors and colleagues at the National Institute of Mental Health developed the Dementia Mood Assessment Scale.

This article addresses some of the scientific, conceptual, and technical impediments to the timely progress of research on the topics discussed in the workshop. This is a young field of scientific exploration. Most of what has been accomplished thus far is a series of efforts at descriptive research; little truly experimental research has been published. There is, however, abundant information on the methodologic difficulties and other dilemmas encountered in these research efforts in a recent special issue of Alzheimer's Disease and Associated Disorders (Holmes et al., 1994).

Behavioral symptoms are those that diminish the quality of life for either the individual with the symptoms or for that individual's care provider. These symptoms may be very obvious, as in hitting oneself and others, or less obvious, as in emotions that appear to be fear or anguish. Behavioral symptoms need to be understood in a cultural and ethical context that examines terms and approaches from multiple perspectives. For example: To whom is behavior disruptive? Is there any positive value in disruption?

A dysfunctional behavior can be defined as “an inappropriate action or response, other than an activity of daily living, in a given social milieu that is a problem for the caregiver.” Dysfunctional behaviors commonly accompany cognitive impairment and are a significant source of burden to caregivers. Dysfunctional behaviors may be the first sign of a dementing illness, even before caregivers perceive changes in the patient's cognitive abilities. However, unlike cognitive impairment, dysfunctional behaviors are amenable to medical treatment. Effective treatment of these behaviors requires their description and identification, evaluation of their frequency and impact on the caregiver, identification of causes, development of a treatment plan, and evaluation of the effects of treatment.

The cognitive domain has long been the focus of clinical and scientific efforts in dementia research. Only recently has behavior, and more specifically behavioral problems, been recognized as a legitimate focus of research. In its summary statement of September 1991, the Alzheimer's Association Task Force on Behavior Management noted the following with regarding behavioral disturbances: “(a) the study of assessment and treatment of behavioral problems must develop in its own right as well as complement studies on improving cognition; (b) controlled clinical trials of behavioral treatments of behavioral disturbances are desperately needed; and (c) both standardized rating scales and direct behavioral observations should be used to assess problems and determine treatment efficacy.” [Emphasis added by author.]

Behavioral and environmental approaches to the treatment and management of Alzheimer's disease (AD) have received increasing attention by both researchers and clinicians over the previous 10 years. Although the impact of the behavioral consequences of the disease on both the victim and the caregiver has been recognized, effective approaches for managing these behavioral consequences have only just begun to be studied and applied in practice. Current knowledge regarding treatment and management of the behavioral symptoms of AD has developed primarily as a result of trial and error on the part of caregivers and the application of effective interventions from other areas of clinical practice (e.g., behavioral symptoms of mental illness and other neurological disorders).

There is a need for more rigorous evaluation research on existing services for Alzheimer's disease (AD; e.g., specialized day care, respite care, etc.). The needs, resources, and responses of rural caregivers, and the development, implementation, and evaluation of innovative services where they do not exist are of particular interest.

The usefulness of data generated by clinical trials of patients with behavioral disturbances of dementia depends heavily on the study design and the measures used to determine patient outcomes. Several rating scales are available to assess general behavioral problems, agitation, and depression in patients with dementia. The appropriate rating tool depends not only on the purpose of the study but also on whether the measure meets the criteria discussed subsequently.

Foreshadowing the following day's presentations on cross-cultural perspectives, Dr. Hendrie raised the issue of how to measure the effect of environment and culture on behavioral disturbances. For example, agitation may disappear when patients are admitted to a hospital, indicating that patient-caregiver interactions or the patient's living environment may be the cause of this problem.

Institutionalized persons with Alzheimer's disease (AD) often demonstrate nonfunctional behaviors such as resistance to dressing and washing, disturbed sleep, restlessness, homesickness, and wandering. If behavior is regarded as emanating from the person with impaired cognition interacting with his or her environment, the environment is found to have a very significant impact on retaining functional capacity. For example, studies have demonstrated how behaviors described as wandering and homesickness strongly relate to events and objects in the environment (Zingmark et al., 1993). The context or environment contributes to the success or failure of behavioral strategies. The goal in dementia care must be to have a positive impact on functional behavior. One consequence of this is that functional behavior can be altered, within limits, through environmental strategies.

The relationship between a demented patient and his or her caregiver is an important aspect of the patient's environment. The interaction between the parties is the basis of their relationship. It stems from their ability to communicate—a very complex process with many different aspects from perception to practice.

Uncontrolled reports suggest that 25% to 75% of patients with behavioral disturbances of dementia respond to conventional neuroleptic drugs. Yet during the past 20 years, results from only four randomized, double-blind, placebo-controlled trials of neuroleptics in dementia have been published. These studies were conducted in hospitalized inpatients or nursing home residents.

Behavioral symptoms of dementia are stressful not only for patients but also for their caregivers. These symptoms include delusions, hallucinations, activity disturbances, aggressiveness, sleep disturbances, affective disturbances, and anxieties and phobias. Despite the burden of coping with behavioral problems, little information is available about effective treatments for behavioral symptoms in Alzheimer's disease and related dementing disorders.

The proportion of institutionalized and noninstitutionalized demented people differs among countries. In the Kungsholmen study in Sweden, in the total population 75 years and older, around 50% of the demented people lived in their own homes and 50% lived in various types of institutions. In the future, it may not be possible, for ideological and financial reasons, to build new institutions to take care of the increasing number of dependent and ill elderly. Home care with support for relatives, day care, and collective living are better alternatives for some demented people.