Health Sciences Center Library, Kuwait University

The Role of Doctors in Treating People with Learning Disability

Learning disability is a common denominator in a wide variety of conditions. It can occur with or without any other mental or physical disorder. There has been an appropriate shift away from medicalising people with learning disability. So why should doctors consider people with learning disability as a group?

Medical Associations

People with learning disability as a group have higher rates of physical health problems and consequently higher morbidity and mortality rates. Conditions may result from the same underlying cause as the person's learning disability (e.g. cerebral palsy due to hypoxic brain damage). Higher morbidity and mortality rates also result from late presentation of illness, poor access to health services and screening, incomplete investigations of symptoms and delay in treatment.

In people whose functioning is already compromised, undiagnosed and untreated conditions can have a disproportionately high impact. Learning potential and the ability to live as independently as possible may be further impaired. Apart from specific physical illness in certain conditions e.g. valve disease in Down's syndrome, the prevalence of other illness is higher in people with learning disability as a whole, for example:

Epilepsy - increased incidence with severity of learning disability. May be due to same underlying cause as the learning disability. Can further compromise cognitive ability through seizure activity or side effects of medication.
Sensory impairments - adequate hearing and vision are important for psychomotor development, cognitive achievements and social/emotional development. Recognition and treatment of such impairments can significantly improve communication and learning ability. Earwax is particularly common and simple to treat.
Obesity - may further increase stigma, as well as predispose to other health problems.
Gastrointestinal problems - reflux oesophagitis, helicobacter pylori, carcinoma, constipation.
Respiratory problems - chest infections particularly common.
Cerebral palsy - especially in those with more severe learning disability.
Orthopaedic problems - joint contractures, osteoporosis.
Dermatological problems.

Psychiatric Associations

Emotional & behavioural disorder is more common in children & adults with learning disability than in the general population. Specific psychiatric disorders are also more common, e.g. schizophrenia, bipolar affective disorder.

Why more psychiatric illness?

The organic cause of the learning disability may also cause or predispose to psychiatric disorder (e.g. epilepsy, schizophrenia, Alzheimer's disease in Down's syndrome).
Communication problems - inability to express feelings (e.g. after bereavement) may lead to depression/anxiety.
Higher rates of social deprivation especially in mild learning disability group.
Vulnerable to abuse.
Low self esteem (stigma, dependence on others).
Often multiple losses - changes of carer, home, etc. (may all occur together if living with parents until their deaths).

Presentation of psychiatric problems in people with Learning Disability

People with mild learning disability may present in broadly similar way to the general population.
Low IQ affects the symptom complex of common mental illnesses, e.g. less complex delusions in psychotic disorders. Where there is less verbal communication, observable signs are relied on more in making the diagnosis, e.g. weight loss, withdrawal, agitation, tearfulness in depression; behavioural disturbance in psychotic disorder.
Those with lower IQ often present with ‘challenging behaviour' - need to methodically look for cause (which may be physical, psychological or environmental/social).

Psychiatrists specialising in working with people with learning disability develop expertise in:

Recognising presentation of psychiatric illness in this group as a whole.
Knowledge of common patterns of behaviour (‘behavioural phenotypes') or illnesses in particular syndromes.
Behavioural management.
Knowledge of appropriate treatment (more susceptible to side-effects of drugs).
Multidisciplinary working with all agencies involved.
Specialised areas such as forensic psychiatry, autism, and epilepsy.

Communication

People with learning disability may have problems in communicating with others due to:

Intellectual impairment leading to problems comprehending and processing information.
Sensory difficulties (hearing, vision).
Problems in understanding social interaction (e.g. autism).
Speech problems (e.g. articulation problems).
Others not listening and valuing what they are trying to communicate.

Health professionals need to:

Take time and have patience.
Value what is being communicated.
Recognise non-verbal cues.
Find out about the person's alternative communication strategies if verbal communication is difficult (e.g. their typical non-verbal cues, use symbols, sign language).
Explain things clearly in an appropriate way (verbally & with pictures etc).
Be prepared to meet the person several times to build up rapport & trust.
Use the knowledge and support of people's carers.

Accessing general health care

Considering the higher levels of physical health problems amongst people with learning disabilities, they are relatively low users of health services.

In order to access health care a person or their carer needs to be able to:

Recognise symptoms.
Realise their significance.
Know who to report them to.
Be able to communicate these symptoms effectively to health professionals.

If a person has problems with any of the above, conditions are at risk of being missed.

Health professionals need to be able to:

Understand what person is communicating.
Recognise different presentations.
Make a diagnosis.
Differentiate assent/dissent.
Understand consent/capacity issues.
Implement appropriate treatment.
Identify side-effects.

Diagnostic overshadowing

This means when a person's presenting symptoms are put down to their learning disability, rather than seeking another, potentially treatable cause. For example, when a person presents with a new behaviour or existing ones escalate, doctors should consider:

Physical problems - pain or discomfort, e.g. from ear infection, toothache, constipation, reflux oesophagitis, deterioration in vision or hearing.
Psychiatric cause - depression, anxiety, psychosis, dementia.
Social cause - change in carers, bereavement, abuse.

To enable people with learning disability to fully utilise generic health services, they may need extra support. Carers, community learning disability nurses and advocates may all play a role in this. Arranging longer clinic appointments or preliminary visits to hospitals can give extra time to aid communication, or reduce fear of the unknown. Some community learning disability teams carry out regular health screening. Books are available that use pictures to explain common health problems and procedures, such as breast screening (‘Books Beyond Words' series, Gaskell Books).

Capacity and Consent issues

To give meaningful consent a person has to:

Be appropriately informed about the decision in question.
Have the ability (capacity) to be able meaningfully and freely to give or withhold consent.

A greater appreciation of personal autonomy has lead to dilemmas for example, the unconscious patient who requires urgent medical care. In these urgent life-threatening cases treatment needs to proceed in the incapacitated persons "best interests".

When assessing a person with learning disability to consent for a particular investigation or intervention it must be remembered that this "capacity", if present is only valid for the procedure proposed. For example a person may have capacity to consent for a dental examination but not to surgery for bowel carcinoma (due to inability to understand the nature and likely outcomes of the more complex intervention). Capacity needs to be repeatedly assessed for each proposed intervention.

If a person does not have the capacity and is unable to consent to a plan of treatment, then no one else can give or withhold consent on that incompetent persons behalf. In this case if the treatment is to go ahead it must be in the persons "best interests". This is co-ordinated by the treating professional after widespread consultation, including getting the views of family, carers, advocates and other professionals involved.

This work is licenced under a Creative Commons Licence.