Treating Psychological Problems in Persons with Intellectual Disability (Id) in Primary Health Care
Essentials
The essential goals are to
recognize conditions requiring a more specific assessment of a possible mental disorder or of the causes of challenging situations
identify possible somatic causes and treat them
provide psychiatric first aid care when necessary
ensure further evaluation and treatment of the patient in an appropriate unit.
Special challenges in the psychological development of a person with ID
The intellectual disability (ID) as such affects learning skills, comprehension and personality.
A child with ID starts growing in a family with potentially disappointed and depressed parents - the families recover individually.
Emotional attachment may sometimes have special features: the child may be despised, ashamed of, concealed or a victim of violence, or on the other hand the child may be overprotected or his/her abilities may be underestimated.
Aetiological assessment, additional disabilities (motor disability, sensory disability, difficulties in communication, epilepsy) and other diseases make the person the target of constant observation and physical contact in different ages. Because of investigations in hospital a child or adolescent may repeatedly be separated from the parents.
It may be difficult to adjust the expectations and requirements to the abilities of the person.
The fact that the child needs help daily affects the way the concepts of independence and adulthood are perceived.
Friendship relations and sexual relationships are often complicated. Other people do not always accept dating and sexuality. Having children is often out of the question, even if the person is fond of children.
Mental and behavioural disorders
Mental and behavioural disorders are encountered in 30-50% of persons with ID. This is at least 2 or 3 times more than in persons without such disability. They may be difficult to recognize due to the comorbidities associated with the ID, the limited communication and the abnormal appearance.
Autism spectrum disorders
Autism spectrum disorders Autism Spectrum Disorders are characterized by qualitative abnormalities in reciprocal social interactions and in patterns of communication, and by a restricted, stereotyped, repetitive repertoire of interests and activities, starting at early childhood.
Autism spectrum disorders are significantly more common in persons with ID than in the remaining population.
In addition to autism spectrum disorders, e.g. sensory defects and severe ID may be associated with different mannerisms and ”strange” habits: for example, a blind person may use the sense of smell to orientate to the environment or a person with poor eyesight may look at a bright light and wave fingers in front of his/her eyes.
Attention-deficit hyperactivity disorder (ADHD)
SymptomsADHD in attention-deficit hyperactivity disorder include hyperactivity, inattention and impulsivity. In persons with ID, it is essential that these are not in concordance with the person's developmental level.
Restlessness and distractibility may also be signs of mental or autism spectrum disorder, somatic disease or adverse effects of medication.
Mood disorders
A person with ID often has difficulties in describing his/her moods or other symptoms of depression.
Depression may also be suggested by a change in the general appearance and functional ability, together with irritability, aggressiveness, self-mutilation, concentration difficulties and sleep disturbances.
Periodical variation manifesting as lack of energy and restlessness may suggest bipolar mood disorder.
Aggressiveness or self-mutilation may, besides a mental disorder, be also due to pain, somatic disease or problems in communication or interaction.
Conduct disorders are characterized by repeated unsocialized behaviour associated with outbursts of rage, aggressiveness and destructive behaviour.
Rumination
Rumination is associated especially with severe ID and autism.
The symptom may be associated with reflux oesophagitis requiring treatment.
Disturbing sexuality
Masturbation in the presence of other people can often be eradicated by teaching proper intimacy and by setting clear borders/limits.
Arranging creative activities, work and hobbies is usually very beneficial.
Special problems associated with syndromes causing ID
Certain syndromes, like fragile X syndrome, Prader-Willi syndrome, fetal alcohol syndrome (FAS) or aspartylglucosaminuria (AGU) are associated with typical mental problems and behavioural characteristics. E.g. persons with fragile X syndrome often present with social anxiety and timidity and possibly traits of autism and ADHD.
Somatic causes of challenging behaviour
Restlessness may result from somatic disease or pain (e.g. otitis, disorders of the dentition or sinuses, gastro-oesophageal reflux or peptic ulcer, hip [sub]luxation, fractures).
Psychiatric medication, antiepileptic drugs and medication for somatic diseases may cause psychological symptoms. Antiepileptics have several interactions with each other and with other drugs. Erythromycin may increase the concentration of carbamazepine, and carbamazepine in turn decreases the concentration of e.g. risperidone and quetiapine.
Concurrent anticholinergic drugs may cause the so-called anticholinergic syndrome.
Dysfunction of the thyroid gland is often associated with Down's syndrome; the symptoms of hypothyroidism resemble depression, whereas overproduction may lead to agitation.
An intracranial process may cause odd behaviour and decrease functional ability.
Traumatic experiences and life changes
Persons with ID are prone to experiences of failure, physical and psychological violence and sexual abuse. Bullying and discrimination due to abnormality are not uncommon.
Life changes and crises may have a long-acting effect, and the symptoms may only appear after a longer time.
when there are changes in the family, new family members born, illness, death
after moving to a group home, assisted living or similar
when the awareness of one's own disability or abnormality is accentuated during crises
after an active phase of rehabilitation when there has been a return to a less supported living.
Communication problems
Communication methods that support or replace speech (e.g. pictures and sign language) may supplement or replace deficient speech communication.
A person with ID as a part of the community
Often a person with ID has a carefully protected place or position in a social group; unsettling this position may lead to symptoms.
The group creates a set of rules with power struggles; identifying and discussing power struggles may set free from wrong bonds.
Unclear expectations and limits or inconsistent policy (one member of the personnel may be strict while another gives in) may need unifying.
Symptoms may be the best way of achieving a pleasant goal, to avoid unpleasant tasks, or just to get attention.
Restlessness or other symptoms may be a way to get around real learning difficulties.
Assessment and treatment of mental and behavioural disorders
Extensive assessment in a multiprofessional team is often necessary.
Besides the recognition of possible psychiatric disorders, the assessment also aims at tracing non-psychiatric causes behind challenging behaviour (somatic diseases, sensory defects and deviances, communication impediments, psychological and social factors).
When establishing the diagnosis and during follow-up of treatment, information is collected from many sources (patient him/herself, parents, other closely related person, teacher, instructor of occupational activity).
Structured assessment scales may be used to aid in diagnostics and follow-up of treatment.
Successful treatment usually requires the commitment of both the patient and the associated network of other persons.
Principles of rational medication
Psychiatric medication requires a clearly defined psychiatric indication.
Treatment follows primarily the same principles as in persons without ID.
Drug treatment for children and adolescents is the responsibility of a specialist at least concerning diagnostics and onset of medication.
Psychiatric medication is usually not justified in the management of challenging behaviour that is not of psychiatric origin.
It is essential to assess and treat the causes behind challenging behaviour: somatic disease or pain, insufficient communication methods, lack of meaningful activities, the ways of action of the guiding persons.
If drug treatment is found justified, the symptoms to be followed up should be clearly defined so that the change can be evaluated. Ready-made evaluation scales or individually tailored forms based on the person's symptom profile can be used to support the follow-up.
Pharmacological treatment should be restricted to as few drug preparations as possible and to the lowest effective doses. The simultaneous use of two drugs of the same type should be avoided.
If polypharmacy is found justified, only one drug should be changed at a time in order to be able to evaluate the effect. Follow up long enough (weeks, months).
Remember to follow-up pharmaceutical treatment - ensure that the goals are achieved, adjust dosage and stop inefficient treatments.
Other treatments
The life of a person with ID is in many ways far from normal and the difference may even arouse anxiety in other people. The person with ID, however, may appreciate even minor help and does not necessarily compare his/her situation with the ideals set by other people. On the other hand, the person him-/herself may have unrealistic self-imposed ideals. When planning an extensive rehabilitation programme, look for areas where help can be arranged.
Depending on the situation, speech therapy, occupational therapy, music therapy or physiotherapy may be considered.
Of the actual psychotherapeutic methods, the best results have been obtained with cognitively oriented types of psychotherapy, especially cognitive behavioural therapy (CBT). There are also good experiences of dialectical behaviour therapy (DBT) as well as of acceptance and commitment therapy (ACT). The psychotherapist should have special expertise in working with persons with ID.
Treatment of aggressiveness and self-injurious behaviour may benefit from the approach where, based on functional analysis, the disturbing behaviour is replaced with more appropriate modes of action, or from a behavioural therapeutic educational program.
A stable social network and meaningful programmed occupational or day care activities form an important starting point.
Coping of caregivers
The care of a person with ID is often both physically and mentally hard for the family members and other caregivers. Sense of duty may prevent others of talking/admitting their tiredness. Sometimes the family members make enormous sacrifices because of the family member with ID. The first signs of fatigue in the parents, other family members or caregivers may actually be expressed as symptoms of the person with ID.
Show concern for the family and the care givers and ask how they are coping.
How does the family live, do they have other people to visit them, do they see others as they used to?
Does everyone have the desired amount of time for own recreation?
The capabilities of the family may be supported by arranging regular respite care for the child outside the home. There may be a special allowance available for this through the social services.
Special health care services and organizations for persons with ID offer leisure activities, camps, support persons and support families, peer groups, adaptation training courses, etc.
Information sources
Further information and education is often available through various specialized centres and associations. Find out about local availability.