The development of a treatment plan for a patient with dementia
focuses not only on the identification of specific symptoms and
associated general medical problems but also depends on features
of the environment in which the patient is cared for, as certain
issues are specific to particular care settings.
The majority of Americans with dementia reside in the community
(364), although as many as 90% will receive
long-term care during their lifetimes (365). Caring
for patients with dementia at home presents challenges of social
isolation for the patient and emotional and physical strain on caregivers
and others in the home. Care at home is complicated by the need
for many family caregivers to work outside the home during the day.
Providing care at home can also have adverse emotional effects on
caregivers, as well as their children. The psychological stress
on families of individuals with Alzheimer's disease and
other dementias appears to be more complex than simply the burden
of caring for a disabled family member (366). Older
spousal caregivers who experience mental or physical strain are
at higher risk for health problems and mortality than other caregivers
(367, 368). It has been estimated that
30% of spousal caregivers experience a depressive disorder
while providing care for a husband or wife with Alzheimer's
disease (369). The prevalence of depressive disorders
among adult children caring for a parent with Alzheimer's
disease ranges from 22%, among those with no prior history
of affective disorder, to 37%, among those with a prior
history of depression (369, 370). Particularly
difficult behavior problems for patients with dementia living at
home include poor sleep, wandering, accusations directed toward
caregivers, threatening or combative behavior, and reluctance to
accept help. However, with assessment and treatment, these symptoms
are potentially modifiable. Multifaceted interventions with the
family that provide emotional support, focus on the management of the
specific behavior problem, and, where appropriate, include careful
monitoring of the pharmacological treatment of behavioral symptoms
have demonstrated efficacy in reducing caregiver depression, caregiver
burden, and rate of nursing home placement (84, 87, 371).
The use of home health aides, day care, and respite care may provide
stimulation for patients and needed relief for caregivers. End-of-life
care for patients with dementia is extremely demanding of family
caregivers, with many reporting high levels of depressive symptoms
while caring for their relatives with dementia. However, within
3 months of the death, caregivers experience significant declines
in depressive symptoms (372).
Day care provides a protected environment and appropriate
stimulation to patients during the day and gives caregivers a needed
break to attend to other responsibilities. Some day care centers
specialize in the care of individuals with dementia and may offer
more appropriate activities and supervision. Anecdotal reports and
clinical experience support the benefit to patients of scheduled
activities. However, behavioral symptoms can be precipitated by
overstimulation as well as understimulation, so activities must
be selected with care, and participation should be adjusted according
to each patient's response. It is noteworthy that problems
can arise when patients with different levels of dementia severity
are expected to participate together in the same activities.
A high proportion of patients with dementia eventually require
placement in a long-term-care facility such as a nursing home, assisted
living facility, or group home. Placement is usually due to the
progression of the illness, the emergence of behavioral problems,
the development of intercurrent medical illness, or the loss of
social support. Both the patient's characteristics (e.g.,
race, functional dependence, impaired cognition, behavior) and caregivers' characteristics
(e.g., older age, level of caregiver burden) are determinants of nursing
home placement (335, 373). Approximately
two-thirds of the residents of long-term-care facilities have dementia
(374–376), and as many as 90% of
them have behavioral symptoms. The number of individuals with dementia
living in assisted living facilities is now equivalent to the number
living in nursing homes (377). Thus, these facilities
should be tailored to meet the needs of patients with dementia and
to adequately address behavioral symptoms (120, 378).
Well-trained staff are crucial to the humane care of patients with
dementia. Knowledge about dementia, neuropsychiatric and behavioral
symptoms, and approaches to improving caregiver well-being are essential
elements of a staff training program (379, 380).
There is little evidence from randomized controlled trials that
addresses the optimum care of individuals in nursing homes. One
important element is employing staff who are committed to working
with patients with dementia and are knowledgeable about dementia
and the management of its noncognitive symptoms. Structured activity
programs can improve both behavior and mood (120).
Controlled research on psychotherapeutic interventions has been
limited (see Section V.A).
Other factors valued in nursing homes include privacy, adequate
stimulation, maximization of autonomy, and adaptation to change
with the progression of the disease (see references 381 and 382).
Whether design features such as particular colors for walls, doors,
and door frames affect quality of care remains unknown.
There is no evidence that specialized dementia care units produce
better outcomes than traditional nursing home units. However, some
such units may offer a model for the optimal care of patients with
dementia in any nursing home setting. For example, Reimer et al.
(383) reported that quality of life for older residents
with dementia was the same or better in a purpose-built and -staffed specialized
care facility than in traditional institutional settings.
A particular concern in nursing homes relates to the use of physical
restraints and antipsychotic medications, which are regulated by
the Omnibus Budget Reconciliation Act of 1987. Use of restraints
and antipsychotic medications is fairly common in nursing homes,
and psychiatrists practicing in such settings must be familiar with
these regulations, which generally can be obtained from the nursing
home administrator, local public library, or regional office of
the Center for Medicare and Medicaid Services. Although few studies
are available to guide the appropriate use of restraints in nursing
homes, restraint use can be decreased by strong administrative support
for a restraint-free culture, adoption of philosophy statements
that promote a restraint-free environment, staff education programs,
effecting environmental changes that reduce the risk of falls or
wandering, and careful assessment and treatment of possible causes
of agitation. Rates of restraint use have also been shown to vary
with specific resident characteristics, the number of residents
in a facility, and the nurse/resident ratio (384–386).
Although chest or wrist restraints are occasionally used for patients
who pose an imminent risk of physical harm to themselves or others
(e.g., during evaluation of a delirium or during an acute-care hospitalization
for an intercurrent illness), the use of staff to provide constant,
close supervision is preferable. For long-term-care facilities,
geri-chairs may have a place in the care of patients at extreme
risk of falling and for whom all other options have failed. Regular
use of restraints is not recommended unless alternatives have been exhausted.
When they are used, they require periodic reassessment and careful
The use of antipsychotic medications in nursing homes, as elsewhere,
for the treatment of behavioral and psychotic symptoms (see reference 387 for
a review) requires consideration of the potential benefits and side
effects. When used appropriately and cautiously (see Sections
II.C.5.b.1, and V.B.2.a.2),
these medications can be modestly effective in reducing patient
distress and increasing safety for the patient, other residents,
and staff. Excessive dosing, on the other hand, and sometimes even
appropriate use, can lead to worsening cognition, oversedation,
falls, and numerous other complications including increased mortality,
and place patients at risk for tardive dyskinesia and other serious
medical adverse events (see Section V.B.2.a.2).
Thus, regulations resulting from the Omnibus Budget Reconciliation
Act of 1987 and good clinical practice require documentation of
the indications for antipsychotic medication treatment, a discussion
of available alternatives with the family or other surrogate decision
makers, and the identification of treatment outcomes. In the context
of these regulations, the psychiatrist should regularly reassess
patients for medication response and adverse effects, consider which
patients may be appropriate for withdrawal of antipsychotic medications,
document the clinical reasoning for maintaining their use, and reinstate
their prescription, as deemed clinically necessary (229).
It is noteworthy that a structured education program for nursing
and medical staff has been shown to decrease antipsychotic usage
in the nursing home setting without adverse outcomes (120, 229, 388).
Additional aspects of physical restraint use and antipsychotic
medication prescribing are described in Sections
II.B.4.b and II.C.5.b.1,
4. Inpatient General Medical or Surgical
Patients with dementia on general medical and surgical services
are at particular risk for three problems, all of which can lead
to aggressive behavior, wandering, climbing over bed rails, removal
of intravenous lines, and resistance to needed medical procedures.
First, cognitive impairment makes patients with dementia vulnerable
to behavioral problems owing to fear, lack of comprehension, and
lack of memory of what they have been told. No data are available
to guide treatment recommendations, but general practice supports
a preventive approach of having family members or aides stay with
the patient. Frequent reorientation and explanation of hospital
procedures and plans, writing down important information for the
patient, maintaining adequate light, and avoidance of overstimulation
may also be useful.
Second, persons with dementia are at high risk for delirium,
as discussed in Section III.B.2 (338–340, 389).
Prevention of delirium by judicious use of any necessary medications
and elimination of any unnecessary ones, attention to fluid and
electrolyte status, and prompt treatment of infectious diseases
can also diminish morbidity. Inouye et al. (26) showed
the efficacy of a protocol of orientation strategies and therapeutic
activities to prevent delirium in hospitalized older adults, many
of whom had dementia. Occasionally, psychopharmacological treatment
for cognitive impairment (e.g., with a cholinesterase inhibitor)
and for behavior disorders (antipsychotic agents) is used in the
management of patients with delirium, but no controlled trials exist
Third, patients with dementia may have difficulty understanding
and communicating pain, hunger, and other uncomfortable states.
For this reason, the development of irritability and/or
agitation should prompt a thorough evaluation to identify an occult
medical problem or a possible source of discomfort. A significant
part of the psychiatrist's role in this setting is educating
other physicians and hospital staff regarding the diagnosis and
management of dementia and its behavioral manifestations.
5. General Psychiatric Inpatient
Individuals with dementia may require admission to a psychiatric
unit for the treatment of psychotic, affective, or behavioral manifestations
of neuropsychiatric disorders. For patients who are very frail or
who have significant general medical illnesses, a geriatric psychiatry
or medical psychiatric unit may be helpful when available. Hospitalization
may be indicated because of the severity of symptoms, such as psychosis,
depression, threats of harm to self or others, and violent or uncontrollable
behavior. It may also be indicated because of the intensity of services
required for treatment such as continuous skilled observation, ECT,
or a medication or diagnostic test that cannot be performed on an
outpatient basis (for literature review, see reference 1).
A thorough search for environmental, general medical, or other
psychiatric difficulties that may be leading to the neuropsychiatric
disturbance will often reveal a treatable problem. Both nonpharmacological
and pharmacological interventions can be tried more readily and
aggressively on inpatient units than in outpatient settings.