When behavioral disturbances of dementia can no longer be tolerated by family caregivers or become unmanageable in a nursing home, the clinician must consider appropriate methods of treatment. Some behavioral disturbances may respond to changes in the patient's environment or the approach of the caregiver; for others, pharmacologic treatment is necessary.

The general aims for the care of the elderly in Sweden are to ensure financial security, good housing, service, and care for the elderly. In this regard, two pieces of recent legislation apply: the Social Service Act of 1982 and the Health and Medical Services Act of 1983. The 1982 act emphasizes the right of the individual to receive public service and help at all stages of life; the 1983 act is intended to maintain a good standard of health and to provide care on equal terms for all. In summary, both laws emphasize that help is to be given to everyone who needs help to support himself or herself in everyday needs. Further, this help should be given in as normal a setting as possible. This means that society should help the elderly to remain in their homes for as long as possible, and that the integrity and autonomy of the elderly should be preserved in the home-care environment.

Dementing disorders such as Alzheimer's disease have an enormous impact on the everyday life of the person affected, on his or her family members, and on the staff involved in providing daily care (Borell, 1992). Cognitive dysfunction resulting from dementing diseases, such as memory problems, interferes greatly with the performance of most activities of daily living. The field of occupational therapy has developed a variety of intervention programs addressing everyday activities for persons with dementia. A review of the relevant literature shows, however, that even if the need for such interventions is acknowledged (Porszt-Miron et al., 1988) and an outline for the intervention is described (Bryant, 1991; Rogers et al., 1987), there are few studies evaluating the efficacy and functional relevance of such interventions. Consequently, one urgent task for research is to identify and evaluate intervention strategies addressing occupational functioning among persons with dementia disorders.

The negative effects of behavioral disturbances of dementia on the quality of life of both the patient and caregiver have been recognized for some time. For family caregivers, behavioral problems increase stress and may lead to institutionalization of the patient. In nursing homes, professional caregivers may have difficulty managing behaviorally disturbed patients and avoid interactions with them.

Both pharmacologic and nonpharmacologic methods can be used to treat behavioral disturbances of dementia. Many drugs and drug classes have been advocated as having putative efficacy in treating nonspecific behavioral symptoms; the list includes neuroleptics, anxiolytics, antidepressants (e.g., trazodone), anticonvulsants (e.g., carbamazepine and valproic acid), lithium, β-adrenergic blockers, selegiline, and buspirone. Neuroleptics are among the most commonly prescribed psychotropic drugs for behavioral symptoms and have been described as being “modestly effective” in controlling agitation, both in patients with dementia and in elderly patients in general. To examine the relative efficacy of neuroleptics in treating behavioral disturbances of dementia, the author and colleagues performed a meta-analysis of clinical trials published in the literature from 1954 to 1989.

Although the Nurses' Observation Scale for Inpatient Evaluation is a commonly used tool in nursing home studies of behavioral disturbances of dementia, Dr. Luxenberg noted that this instrument is relatively weak compared with other rating scales. In most nursing homes in the United States, as well as in other countries, nursing aides are the primary caregivers and therefore the primary informants. These aides often have a cultural background different from that of other nursing staff members and may be less likely to accurately report on behavioral problems. Dr. Luxenberg provided an example of a nursing aide who reported that a patient chanted every morning and then refused assistance with bathing and dressing. When the investigator observed this behavior, he found that the patient was praying and refused to bathe until he had completed his prayers.

Patients with dementia may exhibit several types of delusions. Delusions have usually been described as simple and unsystematized paranoid beliefs, such as frequently accusing caregivers of stealing or being insincere or deceitful. Misidentifications—believing that another person is in the house or not recognizing one's own mirror image—also are common in patients with dementia. To further clarify the origin and clinical significance of delusions, the authors studied these behavioral disturbances in patients admitted to the 40-bed Alzheimer Unit at “Fatebenefratelli” Hospital in Brescia, Italy, and in community based patients with dementia.

Studies conducted at our Alzheimer Center in Cleveland, Ohio, along with those of other investigators, have documented that visual hallucinations occur with sufficient frequency in Alzheimer's disease and related dementias to warrant further investigation of their meaning and implications. The largest data set in which frequency of hallucinations among persons with Alzheimer's disease has been examined comes from a collaboration among the National Institute of Aging Alzheimer's Disease Cooperative Study (ADCS), the Consortium to Establish a Registry for Alzheimer's Disease (CERAD), and the Case Western Reserve University Alzheimer's Disease Research Center (ADRC). As a part of this collaboration, we examined data from 556 patients with Alzheimer's disease treated at medical centers across the United States who had been rated using the CERAD Behavior Rating Scale for Dementia (BRSD). The BRSD is a comprehensive, informant-based tool that includes several questions concerning the frequency with which hallucinations and misperceptions were experienced during the month before the interview.

Misidentifications are misperceptions (i.e., a form of illusion) with an associated belief or elaboration that is held with delusional intensity. Although misidentifications have been defined in several ways, four main types have been described: (a) presence of persons in the patient's own house (the phantom boarder syndrome); (b) misidentification of the patient's own self (often seen as a misrecognition of his or her own mirror reflection); (c) misidentification of other persons; and (d) misidentification of events on television (the patient imagines these events are occurring in real three-dimensional space).

Behavioral disturbances of dementia are associated not with cognitive decline but with progression of the disease and concomitant functional impairment. Thus, these distressing behaviors occur later in the course of the illness, at a time when caregivers' resources may be sorely taxed. Behavioral disturbances are often cited as precipitating placement in nursing homes.

A wide range of neuropsychiatric disturbances, which include noncognitive behavioral problems and mood changes, can accompany the unrelenting cognitive deterioration seen in patients with Alzheimer's disease. Aggression, agitation, paranoia, hallucinations, sleep disturbances, or depression occur in more than 50% of patients with Alzheimer's disease, both those living in the community and those cared for in nursing homes. Disinhibition, apathy, indifference, fatigability, complaining, and negativism, as well as incontinence, changes in appetite, and sexual disturbances, also occur in patients with dementia.

Emotional lability, intrusiveness, and catastrophic reactions are some of the noncognitive psychopathologic phenomena seen in patients with Alzheimer's disease. These symptoms occur frequently throughout the disease course and strongly influence the well-being of patients with dementia and their caregivers.

Of the numerous behavioral disturbances identified in patients with dementia, depression, anxiety, and sleep disturbances can have a considerable impact on the quality of life of both the patient and the caregiver, particularly if the caregiver is a family member. Our task as clinicians is to identify the most appropriate treatment based on current knowledge of these behavioral problems.

Consensus concepts regarding behavioral disturbances of dementia can be useful for screening populations of patients with dementia. However, these concepts may not serve well as guidelines for treatment in clinical practice. The physician or nurse faced with a husband with dementia and his healthy wife must consider seriously all dementia-related behavioral problems, whether or not they fit within consensus concepts. It also is easier to reach a consensus on highly abstract concepts than to achieve agreement on more practical issues. Cultural differences, both between countries and within the same country, also complicate the consensus process.

Several investigators have examined the relationship between a patient's premorbid personality and behavioral disturbances of dementia. Dr. Swearer described a study in which she examined whether premorbid personality was a predictor of disordered behaviors in dementia. Specifically, she considered whether premorbid aggression predicted subsequent aggressive behaviors, whether premorbid suspiciousness predicted disordered ideation, and whether premorbid restlessness predicted hyperkinesia. She found a relationship only between premorbid aggression and subsequent dementia-related aggressive behaviors. However, this finding appeared to be due to recall bias of caregivers of patients who were aggressive at the time of evaluation. This suggests that premorbid personality traits do not predispose to subsequent behavioral disturbances in dementia. On the other hand, in retrospective analyses, Drs. Whitehouse and Strauss and colleagues have found that premorbid personality predicts subsequent psychopathology.

Delirium is a recognized cause of behavioral disturbances of dementia. Yet the proportion of cases of behavioral disturbances resulting from delirium is difficult to determine. In many epidemiologic studies, delirium is excluded as a causal factor. In the few studies that describe delirium as an underlying cause of behavioral disturbances, the mechanism by which delirium is diagnosed and the extent of the diagnostic workup are rarely delineated.

Patients with dementia may be treated with several drugs because of comorbid conditions or symptoms related to the dementia itself. Such drug treatment can complicate patient management because many drugs may cause side effects, such as depression and Parkinsonism, that also are considered behavioral disturbances of dementia. Distinguishing between drug side effects and behavioral problems is difficult but necessary for several reasons. Attributing the behavioral disturbance to an incorrect cause can affect the type of treatment selected and the patient's response to it. It also can increase the overall cost of care and adversely affect the patient's quality of life. Making this distinction has theoretical importance as well, including the development of new drugs that have fewer behavioral side effects.

In the early part of this century, Alzheimer described a 51-year-old woman who experienced a rapidly increasing loss of memory. She could no longer find her way around her home. She carried objects back and forth, and hid them. At times, she thought someone wanted to kill her and began shrieking loudly. This type of behavior certainly would have been a strain for the woman's husband. If he could no longer care for his wife, his principal option was to place her in a mental hospital. Today, patients with Alzheimer's disease who require institutionalization are more likely to be admitted to a nursing home. However, because most patients in nursing homes have some type of mental illness, nursing homes, by default, serve as mental hospitals. The increasing number of nursing home residents with dementia prompted the author and colleagues to examine behavioral disturbances in this patient population.

Behavioral disturbances are a primary reason elderly patients with dementia are admitted to long-term care facilities. Blackwood and colleagues found that 58% of 130 consecutive patients admitted to a nursing home because of a behavioral disorder had a principal diagnosis of dementia. Similarly, in a study of long-stay institutional care for persons with dementia in France, the author and colleagues found that 67% of 352 patients had been admitted because of a social or behavioral problem. Thus, outpatient management of behavioral disturbances would appear to play a central role in determining whether a patient with dementia can remain in the community.

The recognition that behavioral disturbances of dementia are an entity that deserves study raises the question of exactly how these behaviors should be investigated. To obtain useful and relevant data, researchers must carefully design their studies, considering the potential difficulties of studying elderly, cognitively impaired patients. Of particular concern is whether patients with Alzheimer's disease or vascular dementia should be included in the same study or whether basic differences between these two diseases warrant separate investigations.