Intellectual disability is characterised by impairment in cognition (intellect) and difficulties in day-to-day life skills. It is fixed and lifelong, although with the right support most people with intellectual disability can lead active and fulfilling lives.
People with an intellectual disability have not always been treated well. One criticism of the care they receive is that drugs used to treat mental illness (known as “psychotropics” because of their effect on the brain) are prescribed too readily and without good reason. Although this criticism has been voiced for many years now, the true level of psychotropic drug prescribing has remained largely unknown. In research published in The BMJ we looked at how frequently psychotropic drugs were prescribed to people with intellectual disability and under what circumstances.
Data on mental illness rates and psychotropic drug prescribing were collected from a large database of real-life GP care over the past 15 years. Just over 33,000 people with intellectual disability were included, and were drawn from all over the United Kingdom. The major finding of our research is that whereas almost two-thirds of people with intellectual disability have been prescribed a psychotropic drug, only around one third have a record of mental illness.
There are therefore a large number of people who have been prescribed psychotropic drugs but who do not have a diagnosis of mental illness. This suggests that these drugs might be used inappropriately, or without justification, in some cases.
We then looked in more detail at one particular group of psychotropic drug, the anti-psychotics. Anti-psychotics are powerful drugs that are designed to treat severe mental illnesses, such as schizophrenia and bipolar disorder.
Although people with intellectual disability develop severe mental illness at higher rates than the general population, our results show that the majority (more than 70%) who were prescribed an anti-psychotic drug by their GP did not have a diagnosis of severe mental illness.
So who is being prescribed anti-psychotic drugs, if not those with severe mental illness? To answer this question we looked at associations between other conditions (in addition to intellectual disabilities) and prescription of anti-psychotics.
People who have intellectual disabilities and either behavioural disturbance, autism or dementia were significantly more likely to be prescribed anti-psychotic drugs. Older age was also associated with increased chances of being prescribed an anti-psychotic drug. This means, therefore, that prescriptions for anti-psychotic drugs are being given to people with conditions which ordinarily should not be managed with anti-psychotic medication.
Addressing other issues
Should we be concerned about this? Put simply, yes. Any treatment that is given should offer a reasonable chance of success, but there is little research evidence that anti-psychotics are helpful for people with intellectual disability and challenging behaviour.
Added to this they may be harmful; these are potent drugs that can cause serious unwanted side-effects, such as sedation, movement disorders (stiffness and shakiness), and changes in metabolism that can predispose to weight gain and diabetes. Indeed, clinical guidelines of best practice for managing challenging behaviour do not recommend the routine use of anti-psychotic drugs and advocate holistic management to address psychological and social issues that may contribute to the behaviour.
Our research did not focus on why there is disproportionate use of psychotropic medication in people with intellectual disability and further work is needed to establish the reasons behind these findings. It might be that alternative management strategies, such as behavioural programmes or enhanced social care, do not work or are simply not available when they are needed. Medication is a relatively inexpensive intervention that can be offered almost immediately – but convenience should not override clinical best practice.
People with an intellectual disability have a right to good care. Appropriate support, and medication where required, can allow people with intellectual disability to fulfil their potential and live the lives that they want to live. We must develop strategies to reduce inappropriate psychotropic prescribing in and invest in effective alternatives.