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TerhiKoskentausta

Encountering a Person with Intellectual Disability (Id) and Psychological Problems in Primary 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 evokes a wide range of emotions in family members, and emotional attachments often have special features.
  • 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 child or adolescent.
  • The fact that the child needs help daily affects the way the concepts of independence and adulthood are perceived.
  • Friendship relations and sexual relationships may be complicated. Other people may have reservations about dating and sexuality.

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 other special features.

Autism spectrum disorder

  • Autism spectrum disorder Autism Spectrum Disorder is 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 disorder is significantly more common in persons with ID than in the remaining population.
  • In addition to autism spectrum disorder, 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 their eyes.

Attention-deficit hyperactivity disorder (ADHD)

  • Symptoms ADHD 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 their moods or other symptoms of depression.
  • Depression may also be suggested by a change in the general appearance and functional ability, together with tearfulness, irritability, aggressiveness, self-mutilation, concentration difficulties, sleep disturbances and increased need for support.
  • Periodical variation manifesting as lack of energy and restlessness may suggest bipolar mood disorder.

Aggressiveness, self-injurious behaviour and conduct disorders Behavioural and Cognitive-Behavioural Interventions for Outwardly-Directed Aggressive Behaviour in People with Intellectual Disabilities

  • 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.

Eating disorders

  • Avoidant-restrictive food intake disorder (ARFID) occurs particularly in autistic people.
    • It may be caused by sensory hypersensitivity, oral motor challenges, need for routines and inflexibility.
  • Rumination is associated especially with severe ID and autism.
    • The symptom may be associated with reflux oesophagitis requiring treatment.

Disturbing sexuality

  • E.g. masturbation in the presence of other people can often be eradicated by teaching proper intimacy and by agreeing on clear borders/limits.

Special problems associated with syndromes causing ID

  • Certain syndromes, like fragile X syndrome, Prader-Willi syndrome, foetal alcohol syndrome (FAS) and 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

  • It can be difficult for a person with ID to recognize and express pain or discomfort.
  • 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 syndrome Down 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 being different 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 different nature 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

  • Many adults with ID live in a community without having had the opportunity to choose their housemates. Work activities and hobbies may also take place among the same group.
  • The group creates a set of rules which can lead to symptoms in community members. Untangling the knots of interpersonal relationships often makes the situation easier.
  • Unclear expectations and limits or personnels' inconsistent policies may need unifying.
  • Symptoms may be an inappropiate 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, problems with sensory processing, 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 the general population.
  • 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).
  • Pharmacotherapy should be actively monitored. The dosage of drugs should be adjusted as necessary, and ineffective treatment should be stopped.

Other treatments

  • The starting point for care and rehabilitation is that the person's housing, school or studies, work or day activities, hobbies and everyday support are organized to meet their needs and that they have the opportunity to be a participant and influence their own life.
  • When planning an extensive rehabilitation programme, look for areas where help can be arranged A Patient with Intellectual Disability (Id) in a Medical Consultation.
  • 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 challenging behaviour is replaced with more appropriate modes of action, or from a behavioural therapeutic educational program.

Organization of assessment and treatment

  • People with ID primarily use normal social and public health services within primary and specialized care. In addition, developmentally disabled individuals are entitled to certain special services for people with disabilities, defined in local legislation and policies.
  • The way in which services for developmentally disabled people are organised may vary greatly even within one country.
  • The assessment of mental disorders and challenging behavior starts within primary care or special services for people with ID.
    • The initial focus is on identifying somatic and other non-psychiatric causes and providing the necessary treatment and everyday support.
  • If there is a need for specialist assessment and initiation of treatment in specialized care, the severity of the patient's ID, the possible presence of severe autism spectrum disorder as well as associated neurological disabilities may have an impact on selecting the appropriate facility and specialist(s). Local guidelines and policies should be followed.
  • In addition, services are provided e.g. by
    • family guidance centres
    • private service providers.
    • Check local availability.

Coping of caregivers

  • The care of a person with ID may be both physically and mentally hard for the family members and other caregivers.
  • It is important that parents can have their own time and hobbies and that siblings also receive adequate attention from the parents.
  • 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.

    References

    • Koskentausta T, Sauna-aho O, Pöyhönen M, Koillinen H. [Intellectual disability]. In: Juva K, Hublin C, Kalska H, Korkeila J, Sainio M, Tani P, Vataja R (eds.). [Clinical neuropsychiatry]. Duodecim Publishing company 2021, p. 343-374. Available in Finnish.
    • Bhaumik S, Regi A (eds.). Oxford Textbook of the Psychiatry of Intellectual Disability. Oxford University Press 2020.