The Patient with Mental Retardation
by Hauser MJ
I. Mental retardation (MR) refers to deficits in cognitive and adaptive
functioning with onset during development. MR is not a specific
diagnosis; there are diverse etiologies and in many cases the etiology
is not known. MR is a persistent condition and therefore is not, by
itself, a cause of emergency department visits. However, the presence of
MR may make individuals vulnerable to environmental disruptions, and it
complicates evaluation, management, and treatment planning whatever the
acute intercurrent condition. When individuals with MR come to the
emergency department there are special considerations to take into
account, which are addressed in this chapter.
- Diagnosis. In general, the mentally retarded person has substandard
cognitive functioning as measured by an IQ test and substandard adaptive
functioning in such spheres as interpersonal relationships, daily living
skills (grooming, hygiene, dressing, self care, safety and self
preservation), managing vocational and/or recreational aspects of life.
Three criteria must be met for a diagnosis of mental retardation.
- IQ (a measure of cognitive function based on verbal and performance
measures) of 70 or below.
- Deficits in adaptive functioning.
- Onset of the disorder before age 18.
- Severity is judged by the degree of cognitive dysfunction as measured
- Borderline intellectual functioning: IQ greater than 70.
- Mild MR (85% of cases): IQ 50-55 to 70.
- Moderate MR (10%): IQ 35-40 to 50-55.
- Severe MR: (3.5%): IQ 20-25 to 35-40.
- Profound MR (1.5%): IQ below 20-25.
- Unspecified MR: Severity undetermined.
- Prevalence. Depending on whether mild MR is included, 1-3% of people
- Sex ratio. MR is approximately 1.5 times more common in males than in
females, possibly due to X-linked genetic conditions.
- There are over 250 known causes of retardation.
- In only approximately 25% of people with MR is there a known
biological cause; in the other 75% of cases, the cause is unknown or due
to factors other than biological ones, such as psychosocial factors.
- Known etiologic factors include:
- Chromosomal abnormalities.
- Genetic defects.
- Perinatal factors (e.g., anoxia).
- Acquired childhood diseases.
- Environmental factors (e.g., lead toxicity, psychosocial factors).
II. Approaching the patient with MR
- There are many misconceptions about individuals with MR that may
adversely affect care.
- It is sometimes believed that people with MR cannot have mental
illness; in fact they are vulnerable to the full range of mental
- Too often individuals with MR are treated as if they do not have
normal feelings and emotions. Of course they do; they are capable of the
full range of human emotions. They can be vulnerable and sensitive, and
in the emergency setting they can be frightened.
- It is sometimes thought that individuals with MR are not affected by
changes in their environment. In fact, with a diminished capacity to
understand what is happening to them, people with MR may have
heightened reactions to such events as staff turnover or other changes
in their residential or vocational programs, new housemates, or
illnesses in family members. These are all stressors that can
precipitate behavioral decompensation. Indeed, being evaluated in the
emergency department is itself an event that can have dramatic
- It may not be recognized that people with MR may have substance abuse
problems, particularly with alcohol.
- There is controversy over the use of antipsychotic drugs
(neuroleptics) in people with MR. Some caretakers believe that these
drugs should never be used. Of course antipsychotic drugs have serious
side effects and their misuse or overuse (e.g., as a substitute for
potentially effective psychosocial interventions) is poor practice.
However, when prescribed appropriately (e.g., for psychotic disorders or
for severe behavioral disturbances that fail to respond to less
restrictive treatment modalities), antipsychotic drugs may have
significant beneficial effects.
- General approach to the patient and the patient's regular caregivers
- Conducting the evaluation
- Evaluate the patient in a safe, private, quiet place. Being observed
and overheard by other patients and staff in the emergency department
can be frightening, distracting, or overstimulating. Some individuals
enjoy the attention they get for disruptive behaviors (e.g., throwing a
tantrum), especially when other patients, families, and staff comprise
an audience. Using a quiet and private place will enhance the
evaluation. While noise and distractions are inevitable in the
emergency setting, they complicate the assessment.
- Conduct the evaluation promptly. The patient with MR may have a
diminished capacity to cope with waiting. Having to wait may cause
additional behavioral deterioration, which may make the subsequent
evaluation and any intervention more difficult.
- When possible, invite familiar staff or family to keep the patient
company; their presence is likely to facilitate the evaluation. MR
patients benefit from predictability; the presence of a familiar staff
member may foster this. Even more important, the patient's regular
caregivers will be needed to provide history.
- Explain any procedures simply and clearly.
- Role of the psychiatrist
- In the approach to the patient with MR, the psychiatrist must use
his or her training in both medicine and psychiatry. This is because
people with MR brought to the emergency department because of a
behavioral disturbance or change in mental status may actually have an
underlying medical or surgical problem that has not previously been
identified. The psychiatrist must then make appropriate medical or
surgical referrals. However, a further role is often warranted: The
psychiatrist may have to act as a representative for the patient-for
example, helping other physicians understand the patient's behavior-so
that the patient receives appropriate evaluation and treatment.
- When the problem is behavioral rather than medical, it must be
ascertained whether the patient has a primary psychiatric disorder or
whether the problem has resulted from a change in the patient's
environment. For example, if a patient is profoundly upset over
placement with a new roommate, effective intervention requires attention
to the living situation rather than simple administration of a sedative.
- Whether the recommendation involves administration of a psychotropic
medication, a change in the patient's living arrangement, or some other
psychosocial intervention, the psychiatrist must not only take the acute
problem into account but also the patient's relationship to long-term
caregivers. Thus the psychiatrist must use an interdisciplinary team
model, which is the model for most long-term care of individuals with
- The concerns of the referring caregiver must be taken into
- It is useful to consider the context of the decision to seek
emergency department consultation. Often, the decision is made when
caregivers are "at the end of their rope" and feel as if they can no
longer cope with the patient. Often the last thing that caretakers of
mentally retarded individuals want is to involve medical personnel or a
hospital in their client's care. They often have put an evaluation off
until the problem is far advanced, and they come in grudgingly.
- Despite their distrust of physicians and hospitals, caregivers may
also have the expectation that the emergency department staff has
miracle workers who will solve the problem, either by taking the patient
off their hands or by telling them what to do. Such mixed feelings may
lead to hostility and disappointment in the caregivers when problems are
not magically solved. The psychiatrist must be aware of the possibility
of such feelings and therefore avoid playing the role of magical
rescuer. Even worse is saying that nothing can be done to help.
- Long-term caregivers generally refer to individuals as clients
rather than patients. It may be helpful to respect their terminology.
- Although it is dangerous to generalize, some characteristics of the
caregivers who may be bringing in the patient are:
- They have a deep involvement in the client's life and care a great
deal about that client.
- They often have a philosophical (or ideological) perspective that
medication is toxic and even poisonous.
- They may mistrust doctors.
- Often, their entire career-their raison d'etre-is based on the
desire to help their clients without medication and without involving
- Some individuals with MR have been cared for by families rather
than professional staff. Such individuals may need referrals for
III. The emergency evaluation
- People with MR are brought to the emergency department for a variety
- A change in mental status-for example, confusion, agitation, or
- A change in mood, energy, or sleep patterns.
- A change in behavior, such as a new onset of aggressive behavior
toward others or self-destructive thoughts or behavior (e.g., head
- New physical complaints, such as pain, or behaviors, such as
agitation, that might signify physical illness. Sorting out such
problems can be extremely challenging. A normal person might say, "My
stomach hurts," whereas a retarded person might become irritable and
attack the staff when he or she has abdominal pain.
- The "disappearing" problem. Often, the patient's behavior changes
when brought to the emergency department. For example, if the patient
was aggressive in his residence, by the time he arrives at the
emergency department he might have calmed down. It is obviously
difficult for the clinician to evaluate a behavior that is no longer in
evidence. Indeed, in a busy emergency department, only acute problems
get serious attention. The emergency staff may say, "Well, he's not
aggressive anymore, so take him home." The regular caregivers may fear a
return of the aggression, however. It is therefore important to assist
these caregivers by evaluating the underlying problem, assessing the
likelihood of a recurrence, and suggesting appropriate interventions.
- Assessment of the problem
- A thorough history must be obtained, including history from
caregivers. Information must be obtained not only about the current
problem and the events leading up to it but also about the patient's
usual level of functioning.
- Medical illness must be ruled out. This is especially important in
mentally retarded individuals because of limitations in their capacity
to communicate. However, people with MR frequently communicate by their
behavior, such as increased irritability or impulsivity, or outbursts of
aggression. Such behavioral change may represent constipation (perhaps
the most common medical cause of agitation), a dental problem, a
urinary tract or other infection, or other medical problem.
- It is important to consider medication side effects as a possible
cause of behavioral deterioration.
- Benzodiazepines are commonly used as sedatives and hypnotics.
Benzodiazepines with long half-lives (see Appendix III) may accumulate,
especially in older individuals, and cause drowsiness and mental
clouding. Short-acting benzodiazepines may cause interdose rebound
symptoms, with marked worsening of anxiety just prior to scheduled doses
(see Chap. 18). Inarticulate individuals with such side effects may
cause a very confusing picture. In autistic individuals, benzodiazepines
may cause ataxia
- Anticonvulsants may produce excessive sedation. Phenobarbital may
be sedating; occasionally it may have paradoxical disinhibiting effects.
- Antipsychotic drugs. Individuals with MR are prone to the same side
effects as anyone else, such as parkinsonism and akathisia. It is
particularly important to recognize akathisia because it can present as
worsening agitation and lead to an unnecessary extensive workup. Even
worse, misdiagnosis of akathisia may lead to an inappropriate increase
in the neuroleptic dose. As with all patients, excessive doses of
antipsychotic drugs can interfere with alertness and overall
performance. Therefore it is important to maintain individuals with MR
on the lowest possible dose of antipsychotic medication to control
psychotic symptoms or target behaviors. Reducing dosages can lead to
problems such as agitation, behavioral deterioration, and worsening of
abnormal involuntary movements, which may represent transient
withdrawal dyskinesias. Therefore dosage reductions must be slow and
- Other medications, easily forgotten in the history, may cause
psychiatric symptoms. These include antihypertensive drugs, eyedrops
for glaucoma (often beta-adrenergic blockers), and allergy medications
(almost all anticholinergic).
- It is important to conduct a full physical examination. This must be
per-formed systematically and patiently. The presence of familiar staff
may help calm the patient. In some emergencies, when a patient cannot
comply with examination, sedation may be necessary.
- Appropriate laboratory tests depend on the differential diagnosis.
IV. Treatment and disposition planning
- Acute treatment considerations
- Consider a need for changes in the patient's immediate environment.
Are there addressable stressors that triggered the decompensation?
- Assess the need for increased supervision of the individual's
- If necessary, suggest a consultation for behavioral management
strategies; these are often designed to guide the actions of the staff.
- Whatever psychosocial treatment recommendations are made, it is
critical to promote consistency of staff behavior toward the patient and
consistency of the patient's environment.
- Psychopharmacologic treatment should be reserved for appropriate
target disorders and syndromes.
- Medications should not be administered to the patient simply to
diminish staff anxiety. In such cases skillful management of staff
expectations are needed. For example, the clinician can acknowledge that
it would be ideal to have a medication that would effectively treat
these symptoms without producing serious side effects, but such a
medication does not exist. It is important to address possible
environmental causes of problem behaviors. This will help the staff
recognize the context in which such behaviors occur and make appropriate
adjustments rather than demanding inappropriate prescription of
- The danger of prescribing antipsychotic drugs for nonspecific
sedation is that they will be continued indefinitely, resulting in
serious side effects for the patient. If nonspecific sedation is
clearly needed, short-term administration of a benzodiazepine is a
- Medications are often needed for longer-term treatment of
depression, obsessive-compulsive disorder, psychotic disorders, and
attention deficit disorder. In addition, pharmacologic treatment may be
useful in treating certain symptoms that have not responded to
reasonable environmental interventions. These circumstances include
short-term treatment of sleep disturbances (e.g., with a
benzodiazepine), treatment of impulsivity or aggression (e.g., with a
series of empirical trials with buspirone, beta-adrenergic blockers, or
carbamazepine), treatment of agitation (e.g., with a benzodiazepine),
and treatment of self-injurious behavior. In general, doses of
medications for individuals with MR are no different from doses used for
other individuals of the same size and age.
- Determination of responsibility for subsequent care. Most patients
are al ready part of an existing caretaking system to which they can
return. At times, the existing caretakers are not capable of caring for
the person during the acute episode, so the emergency staff must help
develop an alternative plan. Such a plan may include temporary acute
hospitalization. However, appropriate acute treatment coupled with
long-term treatment recommendations may make it possible for the
individual to return to his or her prior environment.
- Create a data collection mechanism to assist the patient's regular
caregivers in observation, recording, and communication of pertinent
- Recommend any additional appropriate tests.
- Articulate triggers for follow-up either by telephone or a repeat
visit to the emergency department.
- If appropriate recommend a meeting with other clinicians involved in
the I person 5 care-for example, the primary care physician, residential
caregivers, vocational and/or day program staff, medical specialists,
and behavioral specialists.
V. Legal issues
- Informed consent. The diagnosis of MR does not by itself imply that
the retarded person cannot consent to his or her own treatment (see
Chap. 10). However, in many cases the competence of the individual to
consent may be paired; in such cases there may already be a guardian or
the establishment of guardianship may have to be considered. Competence
must be assessed case by case basis. In the emergency setting,
life-threatening problems warrant emergency treatment, even in the
absence of informed consent. If someone obviously not competent, a
long-term caregiver or family member should be asked to consent to the
evaluation and treatment.
- Guardianship. When there is a legal guardian, authorization for
evaluation and treatment must be obtained from the guardian except in
the case of life threatening emergencies.
- Mandated reporting of abuse of disabled persons. Many states have
statutes that require medical personnel to report a suspicion of abuse.
Clinicians should become familiar with their own state's requirements,
laws, guidelines, and standards of practice.
- Consent decrees. Many states have entered into binding legal
agreements as a result of lawsuits initiated by plaintiffs who wanted
to improve the quality of care delivered to people with MR. These
consent decrees may mandate specific degrees of quality of treatment.
Again it is useful to become familiar with state requirements, laws,
guidelines, and standards of practice.
Gualtieri, C. T. Neuropsychiatry and Behavioral Psychopharmacology. New
York Springer, 1991.
Ratey, J. J. (ed.). Mental Retardation: Developing Pharmacotherapies.
Washington, D.C.: American Psychiatric Association Press, 1991.
Sovner, R. (ed.). The Habilitative Mental Healthcare Newsletter.
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