Rachel Billington: My assignment here is to give the caregiver's view, and I feel that's an awesome responsibility. Because I'm with Alzheimer's Disease International (ADI), I must take a global view of this disease. We recently surveyed our members—all national Alzheimer's societies-and according to 21 early respondents, they have an estimated 15 million people with Alzheimer's disease (AD) in their countries. Total population in those countries is 1.7 billion, and the total world population is 5.7 billion.

A series of patients with the squalor syndrome who were admitted to a psychogeriatric ward were compared with those without the syndrome. Patients with squalor syndrome recieved a greater number of services prior to admission, were less likely to be on psychotropic medication prior to admission, had longer length of hospital admission, and were discharged to a “more dependent” accommodation facility. These findings, methodological difficulties, and avenues for future research are discussed.

Current approaches to the behaviorally based treatment and management of Alzheimer's disease (AD) often fail to take advantage of technological developments in related fields. Thus, there are instances in which the need is not to discover new behavioral approaches, but to make use of “discoveries” made in other fields, charting a course for their application in dealing with AD. This assertion is suggested as a basis for strategic planning involving information transfer, to be conducted in addition to tactical planning regarding research design, implementation, and dissemination.

Among the challenges clinicians and researchers face regarding behavioral disturbances of dementia are how to conceptualize them and how to measure them. The Diagnostic and Statistical Manual of Mental Disorders (4th ed.) recognizes that dementia can be associated with mood symptoms and delusions by formally coding for them but does not have codes for coexisting hallucinations or other specific behavioral symptoms associated with dementia. One reason for this lack of coding classification is the difficulty in conceptualizing the many behavioral disorders, symptoms, and problems seen in patients with dementia.

Behavioral symptoms in people with Alzheimer's and other diseases and conditions that cause dementia are important because they imply distress and because they are likely to have negative consequences for the person, his or her family, and other informal and formal (paid) caregivers who work with the person in any setting. In nursing homes and other residential care facilities, the behavioral symptoms of people with dementia are also likely to have negative consequences for other residents who live in close proximity to demented individuals.

This article is a review of the literature on the elderly with a learning disability, focusing on demographic data, functional abilities, mental health, physical health, and service use. This particular population is increasing and will have high health and social care needs. They share with their non-learning-disabled peers the problems of aging, namely the age-related infirmities of dementia, sensory impairment, urinary incontinence, and poor mobility. They develop psychiatric disorders that remain unrecognized and untreated. Some are cared for by aging parents who also may be frail with serious health problems. Further research is required on the quality of life, successful indicators of aging, and guidance on the type of service that will meet the needs of this group.

John Lyons: I just organized my thoughts on essentially three different domains. If you are pursuing clinical trials, particularly in severely demented individuals, there are three different sets of domains that I believe might be reasonable to think about, and all of these have been touched on today.

Science depends on the ability to measure natural phenomena. To increase our knowledge, accurate definitions and measurements of these phenomena are essential (Thompson, 1989). Over the past 20 years, many researchers have concentrated on learning how to define and measure psychiatric phenomena. The results of such research allow us to develop diagnostic criteria for various psychiatric disorders.

Barry Reisberg: We're very fortunate in having here the regulatory persons from the United States, Canada, and Germany, in the persons of Paul Leber, Catherine Petersen, and Ursula Kern. I hope that we can proceed more or less in the fashion that the last round table went, which is your reactions as you've been listening to what you've been hearing today. And also your reactions, more generally, in terms of the field. We'll start with Dr. Kern and then Dr. Petersen and then Dr. Leber.

Quality-of-life issues affect both the patient and the caregiver. Although several measures of caregiver burden and stress, which reflect quality of life, are available, measuring the quality of life of the patients themselves is difficult.

The purpose of this article is to discuss one of the key behavioral scientific problems facing the Alzheimer's disease (AD) research community: sleep-activity rhythm disruption. Research opportunities in this area have the potential for a significant positive impact on the management of AD in the home and in various institutional environments. Barriers that impede timely implementation of programs of research in this area, suggestions for overcoming these barriers, and resources needed to facilitate the rapid advance of research are also discussed.

In examining the current status and future potential of behavioral treatments for Alzheimer's disease (AD), it is important to begin by defining the scope and goals of such treatments. The category of behavioral treatments includes not only nonpharmacologic techniques to modify or enhance patient behavior, but also psychosocial interventions applied to family members and paid care providers. Caregiver interventions are important because they can reduce the negative impact of AD on those directly and indirectly affected by the disease. Based on current knowledge about the pathophysiology of AD, it is not considered likely that behavioral treatments can have a direct impact on the disease itself by affecting its clinical onset, rate of progression, or prognosis. Although it is conceivable that certain long-term behavioral interventions might delay onset of symptoms (e.g., mental “exercise” to enhance dendritic growth and increase “cognitive reserve,” or long-term stress reduction methods to minimize possible degenerative central nervous system effects of chronic stress), such approaches remain speculative, and their effectiveness would be difficult and expensive to demonstrate. Thus, the current goal of behavioral treatments is to reduce the negative effects of AD on the patient, on the patient's primary caregiver and immediate family, on the healthcare system, and on society as a whole. Such a goal is far from trivial because (a) successful treatment of primary pathophysiology is not on the immediate horizon, and (b) the impact of AD on the family and society represents a major cost of this tragic disease.

Barry Reisberg: Alistair Burns, a researcher and a clinician, is very active in the International Psychogeriatric Association (IPA). He comes to us from the U.K., and will add a unique perspective. Sture Eriksson is from Umea, Sweden, and he is a geriatrician. He sees patients and he also has a research perspective and, more particularly for this meeting, he is the chairman ofthe IPA's research committee. Sandy Finkel is the current president of IPA. He's aclinician, he sees patients, and he does research both in nursing home settings and in outpatient, settings. Serge Gauthier is a neurologist. He comes to us from Montreal, Canada, and he is indeed a clinician and also a researcher and he is the director of the Canadian clinical trials consortium. Raymond Levy is the president-elect of the IPA. He is a professor at the Maudsley in London; he remains a clinician and he also has a truly longitudinal view of the field. Laurie Mallery is from Halifax. Nova Scoria. She's a geriatrician. She's very rnuch involved with patients, and she also has become involved in research and is familiar with research issues, and obviously lends a unique perspective.

Clinical scientists developing rating scales to assess the behavior of patients with dementia have adopted a variety of evaluation strategies. Scales differ according to the source of information (e.g., caregiver versus patient), type of behavior assessed (e.g., mood, agitation, or delusions), origin of the scale (i.e., imported from psychiatry, adapted from psychiatric scales, adapted from scales for neurologic conditions, or developed specifically for dementia), and anticipated application of the tool (e.g., behavioral characterization, longitudinal follow-up, or differential diagnosis). Investigators have rarely articulated the theoretic framework on which their scales are based, and in most cases, theories were eschewed in favor of empirically based assessments of observed behaviors. Theoretic assumptions, however, can be inferred from the structure of the scales.

Before the development of the Behavioral Pathology in Alzheimer's Disease (BEHAVE-AD) rating scale in 1987 by Reisberg and colleagues and its predecessor scale, the Symptoms of Psychosis in Alzheimer's Disease (SPAD) rating scale, in 1985 by Reisberg and Ferris, other scales were available for measuring behavioral disturbances and psychiatric disorders in patients with Alzheimer's disease. However, these scales generally mixed together cognitive disturbances with behavioral symptoms and sometimes included functional impairments as well. These predecessor scales also were not specifically designed to assess the types of behavioral problems seen in Alzheimer's disease. If a scale did address behavioral disturbances of dementia, it tended to be seriously underspecified in terms of the nature of behavioral disturbances.

Alzheimer's disease (AD) results in severe cognitive decline, deterioration in the ability to perform routine activities such as bathing or walking, and changes in affect and behavior. It severely diminishes the quality of life of the affected person and presents a colossal burden to caregivers and a tremendous financial liability to society. The impetus for research relates specifically to these burdens by testing new ways to approach the manifestations of the disease and effectively communicating these ways to caregivers.

Dr. Khachaturian highlighted the importance of noncognitive symptoms of Alzheimer's disease (AD) for the care providers versus our current lack of knowledge about these symptoms' origin, their relationship with cognitive loss, and our ability to control them. Our relatively greater understanding of the pathophysiology of cognitive loss is not yet matched with respect to non-cognitive symptoms, explaining the hit-and-miss treatment approaches currently in use. It is thus essential to study the underlying biological basis of noncognitive changes in AD. Nonpharmacological approaches to the management of noncognitive symptoms in later stages of AD such as teaching of coping strategies must be encouraged, because they may have a major impact on thepatient and the care providers. There is a relative paucity of instruments and clear outcome variables for noncognitive symptoms, including quality of life, which will have to be defined as related to the patient or to caregivers. Such symptoms should be studied in a holistic way in order to treat the underlying pathophysiological process rather than just suppressing unacceptable behaviors such as agitation. Although noncognitive symptoms in later stages of AD are important, from a national research strategy perspective, priority should be given to delaying onset of symptoms by some 10 years. Humane and ethical considerations must always predominate in research on treatment for later stages of AD.

Many rating scales are available to assess the behavior of patients with dementia. Some of these scales have a broad focus and allow clinicians to rate various domains of function, either directly through patient observation or indirectly through caregiver interviews. Other scales are more specific, such as the Cohen-Mansfield Agitation Inventory (CMAI; Cohen-Mansfield, Marx, & Rosenthal, 1989) and the Agitation Behavior Mapping Instrument (ABMI; Cohen-Mansfield, Werner, & Marx, 1989), which focus exclusively on agitated behaviors. As defined by Cohen-Mansfield and Billig (1986), agitation is inappropriate verbal, vocal, or motor activity that is not judged by an outside observer to result directly from the needs or confusion of the agitated person. Data gathered by using the CMAI and the ABMI have provided valuable insight into the subtypes of agitation, correlates of agitated behaviors, and the relationships between subtypes of agitation and cognitive functioning.

This article will discuss briefly the definitions of behavior problems and behavioral interventions. Next, the following series of intervention points related to the quality of life of patients with Alzheimer's disease (AD) will be considered: cognition, activities of daily living (ADLs), agitation, social behavior, nonsocial positive behaviors, and affect states. The article concludes with a discussion of three areas dealing with environmental aspects of AD care: the design of environments, effects of AD on social context, and AD in planned housing.