Clinical Perspectives: What Should We Be Studying? Delusions, p 383 Marco Trabucchi and Angelo Bianchetti
Hallucinations, p 387 Peter J. Whitehouse, Marian B. Patterson, Milton E.
Strauss, David S. Geldmacher, James L. Mack, Grover C. Gilmore,
and Elisabeth Koss
The conceptualization of an international consensus
conference for the purpose of beginning to establish an operational definition
for "behavioral disturbances of dementia" was born at the 7th International
Psychogeriatric Association (IPA) Congress in Sydney, Australia, in November
1995. At that time, a special symposium on "research methodological issues in
evaluating behavioral disorders of dementia" took place. From the high level
of interest and attendance, it was clear that this matter was a source of
great attention and concern by clinicians and researchers working with
demented elderly. Although we have been aware that patients with dementias,
including Alzheimer's disease (AD), manifest psychotic, depressive, and
behavioral symptoms over the course of the illness, such symptoms until
recently have elicited little interest or research support. Further, research
was hampered by the absence of viable measurements and scales developed for
this specific population. In addition, rigorous clinical trials were rare and
virtually nonexistent in those with moderate and advanced dementias. Prior to
1992, only seven randomly assigned, double-blind trials in this population had
been published, only one in a nursing home setting.
As the population ages in the United States and other
countries, we will be confronted with an increasing number of patients with
neurodegenerative disorders, such as Alzheimer's disease and Parkinson's
disease. The progressive cognitive impairment that characterizes Alzheimer's
disease leaves patients increasingly unable to care for themselves. Patients
with Alzheimer's disease also are prone to dementia-related behavioral
disturbances, which can range from annoying (such as repetitive questioning)
to disturbing (such as vocal outbursts) to dangerous (such as hitting and
pushing).
Clinicopathologic and Neurochemical Correlates of Major
Depression and Psychosis in Primary Dementia
George S. Zubenko
Disturbances of mood, thought content, perception, and
behavior are common concomitants of dementia that often produce suffering and
excess disability. These disturbances also interfere with caregiving,
precipitate institutionalization, and hasten death. The current lack of an
effective means of preventing or controlling the pathophysiologic events that
lead to dementia in late life has stimulated efforts to understand and treat
these phenomena. In particular, clinically significant depression and
psychosis often emerge in patients with dementia, regardless of its origins,
and are an important focus of treatment.
Behavioral disturbances of dementia result from both
biologic and environmental factors. This article focuses on the biologic
causes of behavioral problems in patients with dementia.
A key event in neurotransmission is the release of
neurotransmitters. Several neurotransmitters have been identified including
acetylcholine, dopamine, norepinephrine, serotonin, and gamma-aminobutyric
acid. Neurotransmitters react with their respective receptors in the
postsynaptic membrane, where other neurons are activated and neuronal signals
are transmitted to the target tissue. More than one neurotransmitter may be
released from the same nerve ending.
In the normal aging brain, the number of muscarinic and
nicotinic receptors increases in the thalamus and decreases in the cortex. In
the hippocampus, the number of muscarinic receptors decreases, and the number
of nicotinic receptors increases. Decreased concentrations of dopamine in
discrete brain areas and an age-related loss of dopamine uptake sites have
also been reported. Levels of serotonin and norepinephrine decrease with age,
but concentrations of their end metabolites appear unchanged. Levels of the
dopamine metabolite homovanillic acid also seem not to be affected by aging.
Overall, these data suggest a progressive degeneration of the brain with
advancing age, at least regarding monoamines. Because levels of metabolites do
not decrease with age, the brain must have compensatory mechanisms.
An impressive body of literature has been published on
the relationship between psychotic symptoms in Alzheimer's disease and
pathology demonstrated primarily by neuroimaging and biochemistry studies.
Jacoby and Levy in 1980 and Burns and colleagues in 1990, for example,
reported less severe atrophy in delusional patients with Alzheimer's disease
than in nondelusional patients with Alzheimer's disease. The author and
colleagues have found that smaller ventricle-brain ratios are associated with
delusions of theft in Alzheimer's disease. Zubenko (1991) and Doty (1989)
have reported that delusions and hallucinations in patients with Alzheimer's
disease are associated with decreased amounts of serotonin.
Neuroimaging studies have contributed greatly to our
understanding of Alzheimer's disease and other dementias. Computed tomography
and magnetic resonance imaging reveal brain structure and aid in the
diagnostic evaluation of patients with cognitive impairment. Functional
neuroimaging studies use positron emission tomography, single-photon emission
computed tomography, and other methods to measure regional cerebral activity,
including metabolic rate, blood flow, and neuroreceptor density. Functional
neuroimaging results can be useful clinically and have also been used in a
variety of research applications to examine physiologic variables in
neuropsychiatric illnesses.
Witte J. G. Hoogendijk, Eus J. W. van
Someren,Majid Mirmiran, Michel A. Hofman, Paul J. Lucassen, Jiang-Ning Zhou, and Dick F. Swaab
Age-related changes in circadian rhythm (e.g.,
fragmented sleep-wake patterns) occur in many older persons but are
particularly pronounced in patients with Alzheimer's disease. In these
patients, disruptions of circadian rhythms can be severe enough to increase
mental decline, agitation during the day, and restlessness at night. Moreover,
patients whose nocturnal restlessness disrupts the sleep of the caregiver are
more likely to be institutionalized than those who have cognitive impairment
alone.
Lawrence W. Lazarus, Bertram J. Cohler, and Jary Lesser
Although the essence of one's identity-one's self-esteem-is
eroded and devastated by Alzheimer's disease, little attention has been paid
to the regression and dissolution of the self experienced by patients with
this disease. Investigations into the psychology of the self by psychoanalyst
Heinz Kohut and others have provided new ways of understanding a demented
patient's attempts to maintain some semblance of self-esteem and identity in
the wake of progressive cognitive decline.
Are the behavioral disturbances of dementia a primary
manifestation of a devastating degenerative brain disease or a consequence of
a demented patient's inability to cope with a hostile environment that does
not adapt to his or her needs? Our current state of knowledge regarding the
origin of noncognitive symptoms in dementia does not allow us to neatly
dichotomize behavioral disturbances into either syndromes that can be
attributed to altered neurobiologic substrates or behavioral reactions to a
change in social routine or environment. The best fit model is one that
incorporates biologic (neurochemical, neuropathologic, or genetic);
psychological (premorbid personality and behavior, and response to stress);
and social (environmental change and caregiver factors) aspects. For any
particular symptom or group of symptoms, the relative input from each causal
source can vary and may change in the future as our knowledge and
understanding grow. The importance of an interactive causal model is that is
has direct and immediate relevance to the development of treatment strategies.
Three issues concerning behavioral problems of dementia
emerge from research on family caregivers. The first issue concerns the
reliability of caregivers' reports of behavioral disturbances. The second
issue is the realization that caregivers can provide valuable information not
available from other sources. The final issue concerns how caregivers'
reports can clarify the determinants of behavioral problems.
The episodic and nonuniversal nature of behavioral
disturbances of dementia challenges the notion that these symptoms result only
from permanent changes in the brain. Few longitudinal data are available to
correlate the occurrence of behavioral symptoms with the neurobiologic model
of dementia, and most of these data are from clinical trials of
institutionalized patients. Nevertheless, Dr. Cummings noted that even though
behavioral symptoms are highly episodic, they tend to recur in the same
subgroups of patients. The neurobiologic model, therefore, may help determine
the vulnerability of a patient to behavioral disturbances but not the
consistent expression of the behavioral symptom complex.
Establishing a medical diagnosis serves two utilitarian
purposes: providing information necessary to initiate treatment and
communicating information regarding prognosis. A nosology or diagnostic
nomenclature (i.e., a classification of diagnoses) provides further utility by
establishing a foundation for clinical research. In his book, Wulff outlined
four types of diagnoses: (1) symptomatic or pseudoanatomic diagnoses (e.g.,
chronic headache, persistent diarrhea, or irritable bowel); (2) syndromes; (3)
anatomic diagnoses; and (4) causal diagnoses. By definition, syndromes have no
means of being validated by measures external to the constructs themselves.
Often, specific syndromes reflect diverse origins, and conversely, specific
etiologies may cause multiple syndromes (e.g., syphilis, human
immunodeficiency virus, and diabetes).
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.
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.
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.
Dr. Rabins acknowledged the difficulty of measuring
quality of life in patients with dementia. Because reliable answers to
questions about quality of life usually cannot be obtained from demented
patients, an observer-based instrument is necessary to measure quality of life
in Alzheimer's disease and other dementing disorders. The rating instrument
developed by Dr. Rabins and colleagues has criteria to identify appropriate
observers and was designed to yield reliable results across different patient
types and severities of disease. One difficulty was in identifying behaviors
that in some way reflect pleasure or displeasure across the spectrum of
disease. Data on the reliability of the instrument should be available in
early 1997.
Theories Behind
Existing Scales for Rating Behavior in Dementia
Jeffrey L. Cummings
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.
Barry Reisberg, Stefanie R. Auer, and Isabel M. Monteiro
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.
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.
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.
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.
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.
D. William Molloy, Michel Bédard,
Gordon H. Guyatt, and Judy Lever
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.]
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.
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.
Stefanie R. Auer, Isabel M. Monteiro, and Barry Reisberg
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.
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 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, b-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.
Peter J. Whitehouse, Marian B. Patterson, Milton E. Strauss, David S. Geldmacher, James L. Mack,
Grover C. Gilmore, and Elisabeth Koss
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.
Emotional lability, intrusiveness, and catastrophic
reactions differ in pathogenetic mechanisms and are associated with different
degrees of cognitive impairment. They also contribute to premature
institutionalization of the patient and are alleviated principally through
environmental and pharmacologic treatments.
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.
Most clinicians agree that delirium must be recognized
and treated before routine management strategies for behavioral disturbances
are implemented. Thus, the challenge facing clinicians is to differentiate
symptoms of delirium from the behavioral disturbance itself.
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.
Dr. Reifler commented in general about the difficulty of
studying dementia and the behavioral disturbances associated with this
disorder, particularly because these problems are not well defined. He
speculated that Alzheimer's disease may ultimately be found to be more than
one disease and that clinicians may be using different terminology to describe
the same clinical phenomena. Dr. Reifler suggested that studying the
assessment and treatment of the more easily definable behavioral syndromes
might be a better approach than trying to tease out every possible behavioral
disturbance.
Caring for a patient with Alzheimer's disease who has
difficult behavior does not have to be depressing, frustrating, overwhelming,
or sad. Caregivers can develop the skills to manage successfully and
eventually prevent difficult behaviors from occurring while maximizing their
patient's ability to function. This can make the caregiving experience more
rewarding and improve the quality of life of both the patient and the
caregiver.
Behavioral disturbances and psychiatric disorders are
common in persons with Alzheimer's disease and other dementias. Personality
changes are often the earliest sign of dementia; behavioral disturbances and
psychiatric comorbidity generally occur in the middle and later stages of the
disease. At some time during the course of their illness, most patients with
dementia exhibit behavioral disturbances or signs of psychiatric comorbidity.
The presence of a comorbid psychiatric condition increases the likelihood that
the patient will have behavioral disturbances. Although the rate, severity,
and effects of behavioral disturbances can be influenced by pharmacologic and
behavioral management, the efficacy of these interventions often is modest.
Behavioral disturbance of dementia are described in the
literature as related to brain damage and premorbid personality. This
perspective, however, does not consider that a patient with dementia is a
human being who feels, thinks, wishes, and behaves. It also does not consider
that the dysfunctional behavior may be related to the patient's other
behaviors or to the behaviors of the patient's caregivers. Although rating
scales are commonly used to assess behavioral disturbances, an assessment that
a patient shouts, for example, is meaningless unless the situation in which
the patient shouts is considered. What provoked the patient to shout? How does
the caregiver react when the patient shouts? Understanding the context in
which the behavioral disturbance occurs is important for developing effective
care plans. Effective treatment is necessary because behavioral disturbances
can negatively affect the quality of care received by institutionalized
patients with dementia.
In both the nursing home and community settings,
behavioral disturbances of dementia have a considerable impact on caregivers.
In long-term care facilities, behavioral problems impede the ability of
nursing staff to perform their duties and affect their sense of job
satisfaction. In the community, where persons with dementia typically are
cared for by a spouse or adult child, behavioral problems affect the quality
of life and sense of well-being of the caregiver. The overwhelming stress and
feelings of burden engendered by behavioral disturbances often lead family
caregivers to place patients in nursing homes.
In listening to the last several presentations, Dr.
Schneider noted the tremendous heterogeneity among behavioral symptoms of
dementia. Yet many of the speakers discussed behavioral disturbances of
dementia as though they are a syndrome. Cognitive disturbances of dementia are
not discussed in this manner. Clinicians refer to patients having dementia
with marked transcortical sensory aphasia and apraxia or dementia with frontal
lobe symptoms. Dr. Schneider expressed concern over the tendency to group many
behavioral symptoms together as though they were a syndrome. Dr. Brodaty
concurred with Dr. Schneider, noting that his group found meaningful
relationships with caregiver distress only when behavioral disturbances were
analyzed as separate components, not when they were examined together.
Argentina covers an area of 3 million square kilometers,
with almost one third of the population living in the capital district of
Buenos Aires and the greater Buenos Aires area (the neighborhoods surrounding
the capital district). Like other Latin American countries, Argentina is
populated by a mixture of different ethnic cultures; however, unlike other
Latin American countries, most Argentinians are of central and west European
descent. People older than age 50 are mainly European immigrants or first- or
second-generation Europeans. The mestizos-a fusion of Europeans and native
Argentinians-are the second largest ethnic group, followed by the natives,
most of whom live in the central and north part of the country. Argentinian
aborigines have been largely eradicated, consisting of a small community
confined to special reserves. Volga German descendants are grouped in large
colonies in the central and eastern regions of the country.
Indian physicians have long recognized that cognitive
impairment is a potential illness of old age. As early as 800 B.C., Ayurvedic
physicians described loss of memory in older persons and even developed
treatments for it. However, given the limited descriptions of the conditions
being treated, the specific diseases treated by these physicians remains
conjectural. To clarify these issues, my colleagues and I currently are
designing a clinical trial to evaluate the efficacy of these centuries-old
medications in specific conditions.
Hugh C. Hendrie, Olusegun Baiyewu, Denise Eldemire, and
Carol Prince
Studying behavioral disturbances of dementia across
cultures allows us to identify commonalities and differences that may be
useful in determining the best approach to managing these problems. However,
what we tend to find in cross-cultural studies is that the best approach may
not be the same approach, given the different prevalence of and levels of
tolerance for various behavioral problems. These differences are apparent in
the authors' studies of four populations-Jamaicans in Kingston; Cree in
Northern Manitoba, Canada; Yoruba in Ibadan, Nigeria; and African Americans in
the United States. The Jamaicans in this study live in a poor suburb of
Kingston, the Cree live in two fairly small, isolated communities in Northern
Manitoba, and the Yoruba live in Ibadan, a city of more than 1 million people.
The Yoruba community the authors are studying, although concentrated in the
city center, functions much like a village. The African-American population
resides in Indianapolis, Indiana, a moderately sized city of approximately 1
million people.
Jacobo E. Mintzer, Paul Nietert, Kerri Costa, and L.
Randolph Waid
Alzheimer's disease and other dementing disorders have
been reported in most ethnic groups living in the United States. Although the
presence of these disorders in different U.S. ethnic groups is well
documented, the characteristics of dementing disorders, such as the presence
of behavioral disturbances, in these groups remains unexplored.
Although behavioral disturbances occur worldwide in
patients with dementia, the magnitude of these symptoms appears to vary in
different cultures. Dr. Reisberg commented on the low level of agitation and
violence he observed among patients in psychiatric hospitals in India. He
attributed this in part to the level of care the patients received, all of
whom had family members with them in the hospital. Dr. Chandra agreed that the
approach to patients with dementia in India involves a tremendous amount of
human contact. Family members go out of their way to accommodate patients, as
do the professional caregivers. Dr. Hendrie also remarked on the low level of
behavioral disturbances seen among the nursing home patients in some countries
in his study. Whether this results from caregivers' high level of tolerance
for such behaviors or from an inherent difference in the type of dementia is
not yet known.
The challenge facing researchers today is to develop a
systematic approach to defining and studying behavioral disturbances of
dementia. At present, behavioral symptoms of dementia are inconsistently and
imprecisely defined. Further complicating the study of behavioral problems is
the lack of standardized rating tools and the difficulty of obtaining accurate
data, both from the patient and the caregiver. To provide a focus for
researchers, the author outlines several areas that deserve consideration in
future discussions of behavioral symptoms in patients with dementia.
Sanford I. Finkel, Jorge Costa e Silva, Gene Cohen,
Sheldon Miller, and Norman Sartorius
The behavioral (e.g., repetitive questioning, hitting)
and psychological (e.g., delusions, anxieties) signs and symptoms of dementia
can result in suffering, premature institutionalization, increased costs of
care, and significant loss in the quality of life for the patient and his or
her family and caregivers.
Copyright 2008 International Psychogeriatric Association
