Clinical Guideline / Formulary Document - Pharmacy Department Medicines Management Services - Mersey Care
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Clinical Guideline / Formulary Document
Pharmacy Department Medicines Management Services
LEARNING DISABILITIES AND AUTISM SPECTRUM DISORDERS
Introduction
There is an increased prevalence of mental health problems among people with learning
disabilities (LD), compared to the general population. In addition to mental illness,
people with LD may often suffer from coexisting developmental disorders, physical
health conditions and sensory impairments. It is important to take these other problems
into account when assessing, diagnosing and managing any mental health problems.
Diagnostic assessment can be difficult in LD partly because of the complexity of the
presentation but also communication difficulties. People with LD may be unable to give
informed consent or communicate symptoms or co-operate with assessments.
The physical needs of the person with LD, including presence of brain damage, epilepsy,
sensory deficits, dysphagia, nutritional problems, profound multiple learning disability,
complex physical and intellectual disabilities and communication difficulties should be
considered as part of developing a person-centered care plan.
An annual health check should be carried out for people with learning disabilities that
includes a mental health review, including any known or suspected mental health
problems and how they may be linked to any physical health problems and a review of
all medication and related side effects, adverse events, interactions and adherence.
(NICE NG54).
Primary and secondary care should agree monitoring responsibilities, including who will
carry out blood tests and other investigations.
Develop and agree a mental health care plan with each person with learning disabilities
and a mental health problem and their family members, carers or care workers (as
appropriate), and integrate it into their other care plans. (NICE NG54). Record all the
information provided and include when the medication will be reviewed and plans for
reducing or discontinuing the medication, if appropriate.
All legal requirements including those arising from the legislation on mental health,
mental capacity, disability discrimination and human rights should be fulfilled.
Information, treatment and care should be culturally appropriate and tailored to the
needs of the individual and provided in a manner that is accessible to the person with LD
and/or physical or sensory disabilities and/or limited competence in speaking or reading.
Prescribing and Use of Medication in Learning Disabilities
Psychotropic medication is commonly prescribed for people with learning disabilities to
treat a range of psychiatric disorders such as psychotic illness, affective disorders, anxiety
disorders, attention deficit hyperactivity disorder, autism, insomnia etc. and challenging
behaviours. However, systematic controlled research on the clinical use of drugs in the LD
population is limited. Therefore, information to guide the use of psychotropic medication in
LD is mainly based on clinical experience and consensus.
Mersey Care Clinical Guideline / Formulary Document Updated: Jan 2019
Learning Disabilities Next Review: Jan 2021 1|In general, the efficacy of medication in LD can be assumed to be the same as in the
general population and therefore pharmacological management of psychiatric conditions
is broadly similar to treatment in the non-LD population.
The management of mental health problems in people with learning disability should
follow the guidelines described in the relevant NICE guidance.
Before prescribing medication, there should be a clear diagnosis or target problem and a
person-centered treatment plan. Capacity to consent to treatment should be assessed.
The potential impact of medication and other health conditions on the person should be
taken into account. People with learning disabilities may be more susceptible to the side
effects and drug interactions because of the complexity of their condition and due to
reduced drug metabolism, reduced drug clearance and reduced plasma protein binding.
Interactions with any other prescribed drugs should therefore be excluded.
Therefore, when using psychotropic medication, lower doses and slow titration to the
lowest effective dose may be required. The dose and duration of treatment should be
within currently recommended limits from the BNF or manufacturer product information.
People with LD may be unable to report side effects due to difficulties in communication.
Consequently, prescribing and monitoring of psychotropic medication in LD requires
specialist multidisciplinary team input and service user and/or carer involvement.
If unlicensed medication is to be used, there should be a clear rationale and supportive
evidence for use. Where possible, consent should be obtained and documented.
Monitor and review the benefits and possible harms or side effects, using agreed
outcome measures and taking into account communication needs. Medication should be
regularly reviewed, ideally every three months and particularly when polypharmacy
exists.
Prescribers should record all medication prescribed, indications, information provided
and review plans in the patient record. There should be an annual record of the reasons
for continuing prescriptions. NICE NG54.
Driving
For advice on DRIVING and health conditions, see DVLA.
It is illegal to drive if medication impairs driving ability. See Drugs and driving: the law.
It is an offence for a person to drive with certain levels of some medications in the blood.
See https://www.gov.uk/government/collections/drug-driving#table-of-drugs-and-limits
for up to date information.
A guide to support medical professionals in assessing fitness to drive can be found at
https://www.gov.uk/government/publications/assessing-fitness-to-drive-a-guide-for-
medical-professionals
Non-Pharmacological Therapies in Learning Disabilities
Psychosocial interventions are also commonly used interventions for mental health
problems in people with learning disabilities.
Other approaches are also used, including educational, occupational and
developmental approaches, and promotion of healthy lifestyles.
Mersey Care Clinical Guideline / Formulary Document Updated: Jan 2019
Learning Disabilities Next Review: Jan 2021 2|Managing Behaviour that Challenges in People with Learning Disabilities
A significant number of people with LD also display behaviour problems that may be
described as challenging, including aggressive behaviour directed towards others,
stereotyped behaviours, self-injurious behaviour, offending behaviour, and a range of other
socially unacceptable behaviours. Commonly, behaviour problems are a reflection of limited
communication but they may also be due to physical disorders (e.g. infection, earache,
dehydration, toothache and indigestion) as well as epilepsy or side effects of medication.
Many studies have shown that despite limited evidence for effectiveness and safety,
psychotropic medications, particularly antipsychotics antidepressants, mood stabilisers
and sedatives, are widely overprescribed off-label for the management of challenging
behavior in LD, often without adequate review and management of the underlying cause.
Medicines are mostly used to reduce excitation and aggression, despite lack of evidence
There are very few studies comparing different medications for the management of
specific behaviour problems, making it difficult to make specific evidence-based
recommendations.
Functional analysis of the challenging behaviour and positive behaviour support should
be implemented before medication unless the potential risks are severe.
A diagnosis, formulation and treatment plan should be recorded before initiating any
pharmacological treatments for challenging behaviour in LD.
Pharmacological treatment of challenging behaviour should only be initiated following a
thorough process of assessment in situations where there is:
lack of response to non-pharmacological interventions
treatment for any coexisting mental or physical health problem has not led to a
reduction in the behaviour or
significant risk or evidence of harm and/or distress to the service user and others
Medication should be an integral part of a comprehensive intervention strategy and
should be regarded as adjunctive or complementary to psychological or other non-drug
interventions targeted at the challenging behaviour.
Antipsychotic medication should initially be prescribed and monitored by a specialist
taking into account the person's preference (or that of their family member or carer, if
appropriate), side effects, response to previous antipsychotic medication and interactions
with other medication.
There should be regular review of the benefits of medication and side effects.
NICE NG11 states that antipsychotics effectiveness and any side effects should be
reviewed after 3–4 weeks and medication should be stopped if there is no indication of a
response at 6 weeks.
If there is a positive response to antipsychotic medication, conduct a full multidisciplinary
review after 3 months and then at least every 6 months covering all prescribed
medication.
Follow-up assessments should always consider withdrawal of medication and use of
non-drug managements in individuals with challenging or problem behaviours.
Prescribers should only continue medicines that have shown a benefit.
If the behaviour problem is resolved or treatment is deemed ineffective after an adequate
trial, treatment should be carefully withdrawn to minimise secondary problems, e.g.
withdrawal reactions, side effects, toxicity.
Rapid tranquillisation (RT) should follow the Trust Policy SD11 on violence and
aggression. The use of RT should be accompanied by a documented review.
Following the use of pharmacological interventions for challenging behaviour, feedback
should be provided to the service user and/or family/carers, wherever possible.
Mersey Care Clinical Guideline / Formulary Document Updated: Jan 2019
Learning Disabilities Next Review: Jan 2021 3|Stopping Over-medication of People with a Learning Disability, Autism or Both
(STOMP)
STOMP is a national project involving many different organisations which are helping to stop
the over use of psychotropic medicines in people with a Learning Disability, Autism or Both.
The aims of STOMP are to:
encourage people to have regular check-ups about their medicines
make sure doctors and other health professionals involve people, families and
support staff in decisions about medicines
inform everyone about non-drug therapies and practical ways of supporting people so
they are less likely to need as much medicine, if any.
STOMP resources are available at:
https://www.england.nhs.uk/learning-disabilities/improving-health/stomp/
Pan Mersey STOMP document
https://www.panmerseyapc.nhs.uk/guidelines/
Relevant NICE Guidance
NICE. Mental health problems in people with learning disabilities: prevention,
assessment and management NICE guideline [NG54]
https://www.nice.org.uk/guidance/ng54
NICE quality standard (QS142). Learning disabilities: identifying and managing mental
health problems. January 2017. https://www.nice.org.uk/guidance/qs142
NICE: Key therapeutic topic. Psychotropic medicines in people with learning disabilities
whose behaviour challenges Published: 16 January 2017: nice.org.uk/guidance/ktt19
NICE NG11. Challenging behaviour and learning disabilities: prevention and
interventions for people with learning disabilities whose behaviour challenges (NG11).
May 2015. https://www.nice.org.uk/guidance/ng11
NICE quality standard. Learning disabilities: challenging behaviour (QS101). October
2015. https://www.nice.org.uk/guidance/qs101
Mersey Care Clinical Guideline / Formulary Document Updated: Jan 2019
Learning Disabilities Next Review: Jan 2021 4|Learning Disabilities - Anxiety Disorders
General Anxiety Disorder Notes
(GAD)
First Line: People with GAD who have a mild learning disability or mild acquired cognitive impairment may be treated with
Sertraline £ the same interventions as for other people with GAD (see Anxiety Disorders clinical guideline document),
adjusting the method of delivery or duration of the intervention if necessary to take account of the disability or
Second Line impairment.
Alternative SSRI or SNRI £-£££ Anxiety disorders may cause behaviour problems in people with learning disabilities.
Pharmacological interventions for people with GAD and a moderate to severe learning disability or moderate to
Other agents severe acquired cognitive impairment should be initiated with the advice of a specialist.
Benzodiazepines (short-term) £ Short-term use of short acting benzodiazepines or buspirone or small doses of antipsychotic should be reserved
Pregabalin £££ for managing refractory symptoms. Consultant advice should be sought.
Buspirone ££ Psychotherapy approaches may be helpful but these approaches may need to be adapted, for example to cope
Antipsychotic (refractory GAD) with any communication and/or cognitive difficulties.
£-£££
Obsessive Compulsive Notes
Disorder (OCD)
First Line Treatment of OCD in learning disabilities should follow similar guidelines as described in the Anxiety Disorders
SSRI £-££ clinical guideline document.
Offer appropriate psychological therapy (eg CBT), if appropriate, adjusting the method of delivery or duration of
Second Line the intervention if necessary to take account of the disability or impairment.
Alternative SSRI £-££
Carry out an ECG and measure blood pressure before prescribing clomipramine, citalopram /escitalopram
Clomipramine £
Combined treatments may be considered and initiated by specialists only (e.g. SSRI + clomipramine or SSRI +
mirtazapine; SSRI + small doses of haloperidol, risperidone or olanzapine). Monitor closely – risk of additive side
Other agents
effects and toxicity.
Venlafaxine £-££
MAOIs £ Only consider benzodiazepines for short periods in severe anxiety.
Anxiolytics (short term use) £ Only consider MAOIs for atypical obsessive symptoms; Dietary restrictions and interactions limit use of MAOIs
Mersey Care Clinical Guideline / Formulary Document Updated: Jan 2019
Learning Disabilities Review: Jan 2021 5|Learning Disabilities - Other Anxiety Disorders
Panic Disorder (PD) Notes
First Line Treatment of Panic Disorder in learning disabilities should follow similar guidelines as described in the Anxiety
SSRI £-££ Disorders clinical guideline document.
Offer psychological therapy and self help, if appropriate, adjusting the method of delivery or duration of the
Second Line intervention if necessary to take account of the disability or impairment.
Imipramine £, Clomipramine £ When using pharmacological therapy, start with low doses and increase the dose slowly with monitoring
Venlafaxine £-££
Propranolol can help with somatic symptoms but it can cause bradycardia and hypotension and is
Other contraindicated in asthma, heart block, heart failure and peripheral vascular disease
Propranolol £-££ Benzodiazepines and antipsychotics should not routinely be prescribed for panic disorder.
Post-Traumatic Stress Notes
Disorder (PTSD)
First Line Treatment of PTSD in learning disabilities should follow similar guidelines as described in the Anxiety Disorders
SSRI – Paroxetine £ (liquid ££) guideline document.
Sertraline £, Offer trauma-focussed therapies, if appropriate, adjusting the method of delivery or duration of the intervention if
Venlafaxine (off label) necessary to take account of the disability or impairment.
Second Line Combination of drugs and psychotherapy may be useful when there is significant comorbidity
Citalopram, fluoxetine (off label) Hypnotics may be appropriate for short-term use only in PTSD where lack of sleep is a major problem.
£ Risperidone may be used off label in addition to psychological therapies if patients have disabling symptoms
Others and behaviours, for example severe hyperarousal or psychotic symptoms and their symptoms have not
responded to other drug or psychological treatments
Antipsychotics Mirtazapine,
Amitriptyline, phenelzine,
risperidone, Hypnotics
Social Anxiety Disorder (SAD)
First Line Treatment of SAD in learning disabilities should follow similar guidelines as described in the Anxiety Disorders
SSRI guideline document.
(escitalopram £ or sertraline £) Offer psychological therapies (CBT), if appropriate. Role of psychotherapy may be limited where there are
Second Line communication difficulties and limited cognitive abilities
Alternative SSRI or SNRI £-££ SSRIs (escitalopram, sertraline, paroxetine, fluvoxamine (off-label) have proven efficacy in social anxiety
Other disorder for acute and maintenance treatment.
MAOIs £, Benzodiazepines £-££ Benzodiazepines may be useful for short-term use only for severe anxiety as an augmentation strategy
Mersey Care Clinical Guideline / Formulary Document Updated: Jan 2019
Learning Disabilities Review: Jan 2021 6|Learning Disabilities - Attention Deficit Hyperactivity Disorder [ADHD)
ADHD Notes
First Line Treatment of ADHD in individuals with autism or learning disabilities should follow similar guidelines as described in the
Methylphenidate £ Attention Deficit Hyperactivity Disorder guideline document.
M/R ££ NICE recommends lisdexamfetamine or methylphenidate as first-line pharmacological treatment for adults with ADHD, with
(Schedule 2 controlled drug) dexamfetamine or atomoxetine as possible alternatives if these are contraindicated, not tolerated or ineffective. However
BAP ADHD guidelines (2014) state that stimulants and risperidone are the drugs with more evidence in LD patients.
Lisdexamfetamine £££ Consider dexamfetamine in people whose ADHD symptoms are responding to lisdexamfetamine but who cannot tolerate
(Schedule 2 controlled drug) the longer effect profile.
Psychological therapies can be added to drug treatments but more research is required to clarify their role in comorbid
Second line learning disability with ADHD.
Atomoxetine £££
Levels of ADHD are higher in people with learning disabilities than in the general population.
Alternative stimulant Adults with learning disability who have ADHD have been shown to be more severely affected by mental health problems
Dexamfetamine £ and less likely to improve over time than other people with ADHD.
(Schedule 2 controlled drug)
ADHD in learning disabilities is associated with increased incidence of challenging behaviour, stereotypies, self -harm,
anxiety, oppositional defiant disorder, tic disorders and sleep problems.
Other agents Cardiovascular risk in some types of learning disability is increased due to congenital malformations, and this risk needs
Antidepressants £-£££ to be assessed prior to treatment.
Clonidine £ There also needs to be careful assessment prior to the decision to use medication, because of the increased risks posed
by concurrent neurological and other physical health needs.
Treatment may need to be more cautious and side effects monitored carefully. There may be a reduced tolerance of
stimulants in patients with comorbid learning disability and higher rates of adverse effects such as motor tics, social
withdrawal, irritability and loss of appetite, etc. Stimulant treatment should be started at lowest possible dose and
increased very slowly due to higher rate of side effects.
In people who have difficulty communicating, careful consideration needs to be given to enabling them to take part in
discussions about medication and also to monitor the effects of the medication.
Carers will have a pivotal role in carefully monitoring and looking for any evidence of side effects in those service users
who are unable to discuss their medication fully.
Mersey Care Clinical Guideline / Formulary Document Updated: Jan 2019
Learning Disabilities Review: Jan 2021 7|Learning Disabilities – Autism Spectrum Disorders
Notes
General Core features of autism are described by NICE guidelines as qualitative differences and impairments in reciprocal social
information interaction and social communication, combined with restricted and stereotyped interests and activities, and rigid and repetitive
behaviours.
Medication should not be prescribed first line to address the core symptoms of autism because drug treatments have been
shown to be ineffective and also carry significant potential risks. NICE guidelines state that anticonvulsants, antidepressants,
antipsychotics, drugs designed to improve cognitive functioning (for example, cholinesterase inhibitors) and exclusion diets
should not be used for managing of core features of autism.
Autism is commonly associated with a number of comorbid neurodevelopmental and psychiatric disorders (e.g. anxiety,
depression, obsessive compulsive disorders, tics, ADHD, bipolar disorder, psychosis etc.) that can affect the individual’s
presentation and management. Comorbid disorders autism should be appropriately managed.
Educational and psychosocial interventions and environmental changes are recommended first line for core features of autism,
depending on the person’s specific needs.
Pharmacological treatments may be appropriate in exceptional circumstances, e.g. for the short-term treatment of challenging
behaviour or for treatment of comorbid psychiatric and physical health disorders.
People with autism may show an unpredictable response to psychotropic drugs, with increased and decreased sensitivity in
different individuals, as well as more frequent and unusual adverse effects. Therefore, medication should be introduced at a
low dose and increased cautiously, with careful monitoring.
Treatment of For adults with autism and coexisting mental disorders, pharmacological treatments of specific disorders should be similar to
common those of the general population.
coexisting mental ADHD: BAP guidelines state that positive effects have been described with methylphenidate first-line and atomoxetine or
health disorders in clonidine as second-line treatments. Risperidone and aripiprazole and clonidine have also been used. There may be more side
autism. effects with stimulants in people with autism, the most likely being increased irritability and exacerbation of ritualistic
behaviours and stereotypies.
Depression and anxiety disorders should be treated with psychological interventions and/or antidepressants (e.g. SSRIs)
Epilepsy should be treated for the general population. Management should not be influenced by the presence of autism.
Psychosis - Early treatment with antipsychotics is important to the prognosis. Low doses of second generation ‘atypical’
antipsychotics may be preferred due to increased sensitivity and risk of side effects.
Sleep disorders - Sleep hygiene is recommended first line. Pharmacological interventions to aid sleep (in conjunction with
non-pharmacological interventions) should be prescribed by specialists only for short term use when sleep disorders are
persistent and having a negative impact on the service user/carer(s). There is evidence to suggest that melatonin (2-10mg)
may be effective in reducing sleep disturbances in autism. Regular review of ongoing benefits and side effects is necessary.
Mersey Care Clinical Guideline / Formulary Document Updated: Jan 2019
Learning Disabilities Review: Jan 2021 8|Learning Disabilities – Autism Spectrum Disorders
Notes
Challenging or Possible triggers, including physical, mental health and behavioural problems and environmental factors that provoke the
Problem behaviours behaviour problems should be identified and addressed. NICE recommends that a functional analysis of behaviour should be a
in Autism core component of treatment.
e.g. aggression, First-line interventions for behaviour that challenges should be appropriate psychosocial interventions or specific
irritability, hyperactivity interventions to address any identified triggers (including any coexisting mental disorders) for the behaviour
and self-injury. When psychosocial or other interventions are not sufficient on their own, or cannot be delivered because of the severity of
the behavior, psychotropic medication may be tried off-label in an attempt to manage the challenges behaviour. Due to an
atypical response to medication and increased risk of side effects, it is important to use the lowest effective dose.
Second-generation antipsychotics may be considered to reduce irritability, hyperactivity and behavior that challenges in
people with autistic spectrum disorders in the short term. There is a limited amount of research evidence to suggest that
antipsychotics (e.g. risperidone, olanzapine and aripiprazole) may be beneficial for the short term treatment of significant
behaviour problems in autism, including hyperactivity, aggression, and self-injurious behaviours. Aripiprazole may be
beneficial for the treatment of hyperactivity, irritability, aggression, mood swings and repetitive behaviours in some young
people on the autism spectrum, when other treatments and therapies have not worked. Limited evidence from adults with
autism suggests that risperidone may have a modest effect in the treatment and management of challenging behaviour.
There is a significant amount of research evidence to suggest that risperidone may be beneficial for the treatment irritability,
repetitive behaviour, and hyperactivity in autism. Risperidone is also sometimes used to treat problem behaviours in autistic
people, including aggression, self-injurious behaviours and sudden mood changes. Risperidone has been widely used in
children with comorbid conduct disorder. Choice of antipsychotic medication should be influenced by a consideration of the
side-effect profile, the service user’s personal preferences and any past experience of taking the drug. There should be
regular review of the benefits of the drug after 3-4 weeks, any side effects, adherence and physical health. Treatment should
be discontinued if there is no indication of a clinically important response at 6 weeks
Stimulants like methylphenidate can reduce hyperactivity, impulsivity and inattention in some people with autism.
Antidepressants may be considered by specialists for the treatment of people with autism who have other problems, such as
repetitive behaviours or social deficits but NICE does not recommend their use in autism due to insufficient evidence.
In irritability, BAP guidelines advice that aripiprazole or risperidone or an SSRI should only be considered cautiously and
after considering alternatives.
Anticonvulsants may sometimes be used to reduce symptoms such as social and communication difficulties and repetitive,
compulsive behaviour but the evidence is limited. NICE does not recommend routine use of anticonvulsants for core
symptoms or behavioural problems in autism.
Mersey Care Clinical Guideline / Formulary Document Updated: Jan 2019
Learning Disabilities Review: Jan 2021 9|Learning Disabilities - Bipolar Affective Disorder (BPAD)
BPAD Notes
Manic /Hypomanic Episodes People with bipolar disorder who have learning disabilities should receive the same range of treatments and
Antipsychotics, e.g. risperidone £-££, services as other people with bipolar disorder, taking into account the risk of interactions with any other
olanzapine £-£££, quetiapine £-£££ medication that they are prescribed (see Bipolar Affective Disorders clinical guideline document).
OR
Antipsychotic + Lithium ££-£££ Studies have shown that people with learning disabilities are at high risk of developing co-morbid serious
Antipsychotic + Valproate ££-£££ mental illness, including bipolar disorder.
Mania and hypomania may be associated with behavioural problems including uncontrollable overactivity,
Depressive Episodes impulsiveness and recklessness, irritability, sexual disinhibition, aggression and violence.
Fluoxetine £ + Olanzapine £-£££ or Psychological interventions developed specifically for bipolar disorder or high-intensity psychological
Olanzapine alone £-£££ or interventions should be offered.
Quetiapine £-£££ or Lamotrigine £-££ Choice of pharmacological treatment depends on the phase of bipolar illness and current treatments being
OR taken. Service user factors should be considered.
Add lithium to quetiapine, olanzapine Rapid cycling bipolar disorder is often associated with severe behavioural problems particularly self-
or lamotrigine £-£££ injurious behaviour (SIB). People with rapid cycling bipolar disorder should be offered the same
Other interventions as people with other types of bipolar disorder.
Antidepressants £-££ When using drug treatments in people with learning disabilities, the following should be considered:
o Lithium has been used successfully in learning disabilities but regular blood monitoring may
Maintenance treatment prove difficult due to limited understanding and cooperation. People with learning disabilities
Lithium £ or Valproate £-£££ or may have limited capacity to consent to tests
Quetiapine £-£££ alone or in o Consider risk of neurotoxicity when using antipsychotics in combination with mood stabilisers
combination o Consider risk of interactions with carbamazepine
In learning disabilities, be aware that anticonvulsants and lithium may have multiple indications (epilepsy,
Rapid Cycling mood stabilisation, aggression, SIB, neuropathy)
Same interventions as above
Valproate should not be prescribed in pregnant women. In addition, valproate medicines must no longer
be used in women or girls of childbearing potential unless a Pregnancy Prevention Programme is in place.
Women or girls of childbearing potential prescribed valproate should have a Risk Acknowledgement Form
completed and signed at least annually.
Mersey Care Clinical Guideline / Formulary Document Updated: Jan 2019
Learning Disabilities Review: Jan 2021 10 |Learning Disabilities - Dementia
Notes
Mild to Moderately severe People with dementia and learning disabilities should receive the full range of assessments and interventions as other
Alzheimer’s Disease people with dementia including appropriate use of dementia medications (see Dementia clinical guideline document),
Donepezil £ taking into account the risk of interactions with any other medications prescribed.
Galantamine £
Rivastigmine £ People with learning disabilities have a higher risk of developing dementia compared to the general population and
at a much earlier age, with a significantly increased risk for people with Down’s syndrome.
Carrying out investigations may be difficult in learning disabilities and decisions may have to be made using
Moderate to Severe information from history, physical assessment and direct observations and carer’s input.
Alzheimer’s disease Guidelines on assessing capacity must be followed, where investigations are considered necessary and the person
Memantine £ is unable to consent and cooperate.
When using assessment scales to determine the severity of Alzheimer’s disease, healthcare professionals should
take into account any physical, sensory or learning disabilities, or communication difficulties that could affect the
Mild to moderately severe results and make any adjustments they consider appropriate.
dementia in idiopathic The risks and benefits of treating with medication should be considered carefully and discuss with service users and
Parkinson's disease carers
Rivastigmine £ Depending on the diagnosis, a specialist in LD may initiate treatment with donepezil, galantamine, or rivastigmine at
a minimum possible dose and titrate up gradually if tolerated.
NB: The effects and adverse drug reactions of medication should be closely monitored. Acetylcholinesterase inhibitors
Proprietary formulations, can cause nausea and vomiting (common) and muscle cramps, decreased heart rate (bradycardia), decreased
liquid, orodispersible forms appetite and weight, and increased gastric acid production (less common). Common undesirable effects of
and patches ££-£££ memantine are dizziness, headache, constipation, somnolence and hypertension.
It is important to use the skills of the full multi-disciplinary team to support people with LD and dementia.
Mersey Care Clinical Guideline / Formulary Document Updated: Jan 2019
Learning Disabilities Review: Jan 2021 11 |Learning Disabilities - Behavioural and Psychological Symptoms of Dementia (BPSD*)
BPSD Notes
Management People with BPSD and learning disabilities should receive the same care as other people with dementia, taking into
account concurrent conditions and risk of interactions.
Psychotropic medications have only a limited role in the management of neuropsychiatric symptoms in people with
See Dementia clinical learning disabilities and dementia and should only be considered if other psychosocial or environmental approaches
guideline document for further have produced only very limited or no benefit and the risk from the symptoms is high.
information Develop individually tailored care plans that address BPSD.
Be aware that challenging behaviours may be a way of communicating an unmet need.
Treat any underlying contributory problems (e.g. infection, pain, drug side effects)
Treat any coexisting emotional disorders (e.g. depression and/or anxiety and sleep disturbances).
For non severe BPSD, use non-pharmacological interventions (e.g. music, dance, aromatherapy, cognitive
stimulation, massage, multisensory stimulation, exercise, creative therapies) or watchful waiting.
Pharmacological interventions, often in conjunction with non-pharmacological interventions, should only be used in
cases of severe distress or when there is immediate risk of harm to the service user and/or others. Consultant
guidance should be sought.
Acetylcholinesterase inhibitors and memantine may also be considered in the management of BPSD where
psychological/environmental measures alone are not successful. Specialist advice is required.
Specialists should only consider antipsychotics for BPSD if other interventions have been unsuccessful due to
limited benefits and increased risk of stroke/TIAs, chest infections, falls and mortality.
Only risperidone and haloperidol are licensed for the short term treatment (up to 6 weeks) of persistent aggression
in moderate to severe Alzheimer's dementia unresponsive to non-pharmacological approaches and when there is a
risk of harm to self or others
The decision to prescribe an antipsychotic should be taken on an individual basis after full consideration and
discussion with the service user and/or carer about the risks and benefits
Where an antipsychotic is prescribed, use low initial dose and titrate up gradually; monitor for side-effects.
Prescriptions should be time limited and reviewed at least every 6 weeks or according to clinical need.
At each review, consider reducing or gradual withdrawal of antipsychotic treatment
*BPSD include agitation, aggression, extreme anxiety, shouting, changes in behaviour, delusions and hallucinations
Mersey Care Clinical Guideline / Formulary Document Updated: Jan 2019
Learning Disabilities Review: Jan 2021 12 |Learning Disabilities - Depression
Depression Treatment Notes
First Line People with a learning disability or acquired cognitive impairment with a diagnosis of depression should receive
Generic SSRI e.g. sertraline £ or the same interventions as for other people with depression (See Depression clinical guideline document),
Mirtazapine £ adjusting the method of delivery or duration of the intervention to take account of the disability or impairment if
necessary.
Second Line
Alternative SSRI £ or SNRI £-££ or People with learning disabilities are less likely to complain of mood changes due to communication difficulties.
better tolerated newer-generation In people with learning disabilities, depressive illness may be associated with a variety of problem behaviours.
antidepressants Depression may be associated with apathy, withdrawal and self-neglect or it may lead to severe agitation,
irritability and repeated attempts at self-harm or suicide.
Third Line NICE advises that when assessing a person with suspected depression, be aware of any learning disabilities
TCAs £-££££, MAOIs ££ or acquired cognitive impairments, and if necessary, and consider consulting with a relevant specialist when
developing treatment plans and strategies.
Refractory symptoms There are no systematic controlled drug trials on treatment of depression in people with learning disabilities;
Augmentation ££-£££ however, case reports suggest that antidepressants are as effective in LD as in the general population
Combination treatment ££-£££ SSRIs are preferred because of the reduced side effect burden. However, be aware that antidepressants with
a specific serotonin action should be used with caution in people with learning disability as they can cause
NB: agitation, physical aggression and self-injurious behaviour (SIB) and sleep disturbance related to the role of
Proprietary, M/R, liquid, serotonin in autistic symptoms.
orodispersible formulations ££-£££ An adequate trial of antidepressants (e.g. 8-12 weeks) at the optimum dose is recommended.
Concerns with use of antidepressants are akathisia, lowered seizure threshold, hyponatraemia; hypomania
and increased behavioural problems.
Offer psychological treatments; many people with mild learning disability may benefit from psychological
therapy
Mersey Care Clinical Guideline / Formulary Document Updated: Jan 2019
Learning Disabilities Review: Jan 2021 13 |Learning Disabilities - Epilepsy
Epilepsy Treatment Notes
Commonly prescribed Epilepsy is associated with an increased risk of falls and injuries and a higher mortality rate in people with learning disabilities.
treatments Behaviour problems are also common in people with learning disabilities and epilepsy.
Sodium valproate £-£££ The management of epilepsy in people with LD is no different than that for the general epilepsy population and NICE guidance
Carbamazepine £-££ on the management of epilepsy makes it clear that people with learning disabilities should be offered the same services,
Lamotrigine £-££ investigations and therapies as other people with epilepsy. There is no evidence that efficacy of drugs differs for this population
Neurologist referral or advice is essential to allow accurate diagnosis of seizure type. Local neurological support is very good
Other agents and highly recommended.
Clobazam £ Liquid £££ The choice of antiepileptic drugs is based on the presenting epilepsy syndrome. Valproate, carbamazepine and lamotrigine
Ethosuximide ££ are usually used first line. Other antiepileptics are recommended within their licenced indications where first line treatments
Gabapentin £ not suitable or beneficial. See http://www.nice.org.uk/guidance/cg137.
Levetiracetam £ Liquid ££ Do not use valproate-containing medicines during pregnancy except in rare situations in epilepsy for people who are
Oxcarbazepine £ Liquid ££ resistant or intolerant to other treatments, under specialist supervision and the conditions of the pregnancy prevention
Topiramate £ programme (PPP) have been met. Valproate should not be prescribed in pregnant women. In addition, valproate medicines
must no longer be used in women or girls of childbearing potential unless a Pregnancy Prevention Programme (PPP) is in
place. Women or girls of childbearing potential prescribed valproate should have a Risk Acknowledgement Form completed
PRN and signed at least annually.
PR Diazepam £-£ Use of a single anti-epileptic medication is recommended wherever possible. Antiepileptic drug treatment should be initiated at
low doses and titrated up slowly to the appropriate maintenance dose.
Due to differences in bioavailability and potential loss of control of seizures, consistent supply of the same brand, branded
generic or specified generic antiepileptic drug (AED) preparation is recommended.
Careful monitoring of seizures and side effects by staff and carers is important. Immediate action should be taken if side
effects are reported. Investigations and monitoring may be difficult due to capacity to consent issues and non-cooperation.
Serum level monitoring should be done only when clinically indicated.
Rescue medications are usually rectal diazepam or buccal midazolam, if initiated by a neurologist.
The main side effects of sodium valproate are weight gain, gastrointestinal problems, and cognitive dysfunction. The main
side effects of lamotrigine are skin rashes and gastro-intestinal side effects. Common side effects of carbamazepine include
dizziness, drowsiness, skin reactions and ataxia.
Prescribers should be aware of the contraindications to prescribing carbamazepine to some people of Han Chinese or Thai
origin, the teratogenic risks of antiepileptics, especially sodium valproate, the risk of interactions especially with oral
contraceptives. Importance should be placed on cognitive and behavioural effects of antiepileptic drugs as it may be more
difficult to assess and treat in this population.
Antipsychotics and antidepressants can lower seizure threshold and caution is required when used together
Withdrawal of antiepileptic drugs should be managed by or under the guidance of a specialist
Mersey Care Clinical Guideline / Formulary Document Updated: Jan 2019
Learning Disabilities Review: Jan 2021 14 |Learning Disabilities - Schizophrenia
Antipsychotic treatment Notes
First Line: The principles of treatment of schizophrenia in LD are the same as those for the general population, as described in
the Psychosis and Schizophrenia clinical guideline document. In people with coexisting learning disabilities, the
An oral antipsychotic in diagnosis of schizophrenia is difficult especially in those with moderate to severe/profound learning disabilities and
conjunction with a psychological reduced communication skills. Schizophrenia may be commonly associated with epilepsy, negative symptoms and
intervention (family intervention memory impairments. The lower the IQ, the greater the likelihood of unexplained aggression, bizarre behaviours,
and individual cognitive mood lability, or increased mannerisms and stereotypical behaviour (i.e. behavioural equivalents)
behavioural therapy (CBT) is The choice of antipsychotic should be determined by the service user’s current symptoms, previous clinical
recommended by NICE response and side effects, past medication history, comorbidities, concurrent treatments and individual preferences
guidelines for treatment of first (including advance statements about treatment and carer views, if appropriate).
episode psychosis or for Depot or long-acting injectable antipsychotic medication may be considered for maintenance treatment of
treatment of acute exacerbation schizophrenia if preferred after an acute episode or where clinically indicated to avoid covert non-adherence
or recurrence of psychosis or A detailed cardiovascular risk history is necessary before prescribing antipsychotic. Physical health parameters
schizophrenia. Drug choice (e.g. ECG, BP/pulse, FBC, U&E, LFTs, lipids, glucose and weight/BMI) should be monitored at baseline and
should be informed by the likely periodically thereafter, or more often if using high dose or combination treatment.
benefits, relative impact of side People with learning disabilities may be more likely to suffer metabolic, neurological side effects, cardiac side
effects and informed service effects (QTc prolongation), cognitive impairments and other side effects. Antipsychotics can lower seizure threshold
user preference and should not be prescribed routinely in dementia due to increased risk of stroke and death.
Lower doses of antipsychotic medication may be more suitable; Treatment should start with low doses and be
titrated up slowly - use of the lowest effective dose with regular monitoring and review is advised
Refractory symptom Use of high dose antipsychotics or combinations of antipsychotics should be avoided altogether due to increased
Clozapine ££ risk of side effects, particularly cardiac effects. If high dose or combination antipsychotics are used, the decision
Clozapine augmented with a must be made by a consult psychiatrist in consultation /multidisciplinary team. Any prescription of high-dose
second generation antipsychotic antipsychotic medication should be seen as an explicit, time-limited individual trial with a distinct treatment target.
££-£££ There should be a clear plan for regular clinical review including safety monitoring.
Antipsychotics for schizophrenia should be continued as clinically appropriate, but for minimum of 1-2 years to
reduce risk of relapse. For people with learning disabilities who are taking antipsychotic drugs and not experiencing
psychotic symptoms consider reducing or discontinuing long-term prescriptions of antipsychotic drugs gradually
with close monitoring, documenting at annual checks the reasons for continuing the prescription if it is not reduced
or discontinued. Investigations and monitoring may be difficult due to lack of capacity/consent and non-cooperation
Mersey Care Clinical Guideline / Formulary Document Updated: Jan 2019
Learning Disabilities Review: Jan 2021 15 |Learning Disabilities - Sleep Disorders
Hypnotics Notes
Non-pharmacological Sleep difficulties are common in people with learning disabilities. They can cause considerable distress and may be
measures should be associated with subsequent challenging behaviours. People with a learning disability and sleep disorders should receive
considered before drug the same interventions as for the general population, see Sleep Disorders clinical guideline document.
therapy for insomnia. Before considering hypnotics, there should be a thorough assessment to exclude co-morbid mental health problems,
psychological issues substance misuse, physical health problems, side-effects of medication and poor sleep hygiene.
First Line Any associated physical or psychological problems should be appropriate managed.
Zopiclone £ Suspension ££ Sleep hygiene and behavioural strategies should be first line in the management of insomnia
Medication should only be used if other approaches have failed or risks are significant
Second line Hypnotics including Z-drugs and temazepam should be largely reserved for refractory cases or severe insomnia
Zolpidem £ Use hypnotic medication on an ‘as and when necessary’ basis, PRN (every second or third night if required) rather
than on a regular basis.
Third line
When a hypnotic is used it should be for a short period of time (no longer than 4 weeks) only in strict accordance with
Temazepam ££ the licensed indications.
Melatonin may be of value for treating sleep onset insomnia and delayed sleep phase syndrome in learning
Other
disabilities. It has some evidence of benefit in sleep disorders in people with visual impairment, learning disabilities
Melatonin M/R £££
and in autism spectrum disorders and conditions such as visual impairment, cerebral palsy, ADHD and autism. The
usual dose range is 2mg-10mg before bedtime. NB: Doses of melatonin above 2mg are off-label.
See Pan Mersey https://www.panmerseyapc.nhs.uk/media/1546/melatonin_adults_20150930_ps152_v0205.pdf
Be aware of additive side effects especially with other sedative medication.
Advise of the side effects including day-time sedation, falls and sundowning (confusional state in the evening) and
impact of driving, operating machinery or performance of skilled tasks.
Mersey Care Clinical Guideline / Formulary Document Updated: Jan 2019
Learning Disabilities Review: Jan 2021 16 |Learning Disabilities - Managing Challenging or Problem Behaviours
Challenging Behaviour Notes
General principles A comprehensive assessment that addresses both the individual and their behaviour, in the context of any underlying
cause of the behaviour and its consequences, along with a formulation, is an absolute prerequisite in managing any
problem behaviours i.e. functional analysis / positive behaviour support.
Following assessment, specific psychiatric and physical disorders and contributory social and environmental factors
should be addressed.
Psychosocial interventions (including a broad range of therapies, such as communication interventions, applied
behaviour analysis, positive behaviour support and cognitive behavioural therapy) may be used for the short- and
long-term reduction and management of behaviour that challenges
Behavioural strategies should be considered before medication except when the behaviour occurs frequently or is so
severe and intense that delay in treatment would be dangerous to the individual or others.
In severe behavioural disturbance (aggression, anxiety, agitation) requiring urgent intervention for the protection of the
individual or of others, rapid tranquillisation may be necessary.
Medication should be complementary to other non-drug interventions delivered by a multidisciplinary team
Any medication prescribed should have a clear rationale or target symptom and should be prescribed at the lowest
effective dose and for the minimum duration with clear assessment of outcome and side effects.
Where an antipsychotic is used, the choice of agent should be based on consideration of the side effect profile, the
service user’s past experience of use and personal preference.
Antipsychotics may be helpful when psychotic symptoms (e.g. hallucinations and delusions) are present or when
psychological approaches and other interventions have been unsuccessful in managing behaviour or where the
symptoms are so severe that they pose risk to the service user and others (caution in epilepsy)
People with LD are more sensitive to the effects and side effects of antipsychotics. Antipsychotics are associated with
adverse effects, such as weight gain, diabetes, increased prolactin levels, extrapyramidal side effects, tardive
dyskinesia and lowering of seizure threshold.
Effectiveness and possible adverse effects of prescribed medication should be monitored at regular intervals
Review the effects of the medication after 3–4 weeks and discontinue it if there is no indication of a clinically important
response at 6 weeks.
Withdrawal of medication and use of non-pharmacological management strategies should always be considered at
regular intervals.
Mersey Care Clinical Guideline / Formulary Document Updated: Jan 2019
Learning Disabilities Review: Jan 2021 17 |Learning Disabilities - Managing Challenging or Problem Behaviours
Agitation Notes
Antidepressants £-££ Medication should only be used if environmental, psychosocial and behavioural interventions have proved
Anxiolytics £-££ unsuccessful. Any factors that trigger or maintain the behaviour should be identified and addressed (functional
Mood stabilisers £-£££ analysis).
Low Dose Antipsychotics £- Antidepressants e.g. SSRIs, mirtazapine and trazodone may be useful in managing agitation
£££ Short-term use of benzodiazepines (e.g. lorazepam) and buspirone can help manage high levels of underlying
anxiety. Beta blockers can control anxiety with physical symptoms but contraindications must be checked.
Mood stabilisers such as lithium, carbamazepine or sodium valproate are sometimes used for managing
challenging behaviour but the evidence base is limited and they carry a risk of side effects and interactions.
Valproate should not be prescribed in pregnant women. In addition, valproate medicines must no longer be used
in women or girls of childbearing potential unless a Pregnancy Prevention Programme (PPP) is in place. Women
or girls of childbearing potential prescribed valproate should have a Risk Acknowledgement Form completed and
signed at least annually.
Antipsychotics should be reserved for extreme agitation where there is risk of harm to self and others and should
be used alongside psychosocial interventions for challenging behaviour. Limited evidence suggests that
risperidone may be effective in improving a range of behavioural disturbances including agitation. Consultant
advice should be sought. Antipsychotics should be reduced and stopped once symptoms are under control.
Aggression Notes
Low Dose Antipsychotics Medication should be used as a last resort to control aggressive behaviour. The efficacy of all interventions should be
£-£££ assessed against specific target symptoms. Any factors that trigger or maintain the behaviour should be identified
and addressed (functional analysis).
Anticonvulsants £-££ Aggression secondary to agitated depression may be successfully treated with an antidepressant, whereas
Lithium £ aggression secondary to command hallucinations in schizophrenia may require antipsychotics
Antipsychotics should not routinely be used first line but may be used as a last resort in severe behaviour problems.
Low dose second generation antipsychotics used on a PRN basis may need to be considered first due to lower risk
of extrapyramidal side effects. The dose of antipsychotic should be reduced, and treatment stopped once
symptoms are under control.
Lithium has some efficacy in reducing severe aggression but investigations and monitoring may be difficult.
Anticonvulsants have been used to decrease aggression and impulsivity, although the evidence is limited.
Beta blockers may be useful in controlling heightened arousal and anxiety states causing aggressive behaviour.
Mersey Care Clinical Guideline / Formulary Document Updated: Jan 2019
Learning Disabilities Review: Jan 2021 18 |Learning Disabilities - Managing Challenging or Problem Behaviours
Self Harming / Self-Injurious Notes
Behaviour (SIB)
People with learning disabilities who self-harm should be offered the same quality of care and range of treatments
SSRIs as any others bearing in mind that self harming may occur as secondary features of psychiatric and physical
Tricyclics e.g. clomipramine £ disorders among people with severe learning disability. There is very little research on the management of self-
Antipsychotics e.g. risperidone harm in people with a learning disability and so the evidence base for pharmacological treatments for self-harm is
£-££ extremely limited. Pharmacological interventions that are sometimes used for challenging behaviour include
Opioid antagonists, e.g. various antidepressants, antipsychotics, mood stabilisers, beta blockers (e.g. propranolol) and opioid antagonists
Naltrexone / Naloxone ££-£££ like naltrexone or naloxone and sedatives/hypnotic agents (melatonin).
A comprehensive assessment by a mental health specialist followed by psychological and behavioural
strategies provided with respect and privacy by appropriately trained staff should be first line management.
There is limited evidence that opiate antagonists such as naltrexone and naloxone may reduce the rate and
intensity of repetitive self-injurious behaviour and stereotypy in some people with learning disabilities. This is an
off-label use of naltrexone and would need to be conducted in the context of a therapeutic trial starting with a
low dose, with appropriate and regular monitoring and review the effects of the medication.
There is also growing evidence that serotonergic drugs (SSRIs e.g sertraline) may be effective in reducing SIB.
Lithium and carbamazepine have some support for use in SIB. Lithium is licensed for the control of aggressive
behaviour or intentional self-harm; appropriateness for blood tests should be assessed.
Clomipramine has been shown to improve the rate and intensity of SIB and stereotypy
Among antipsychotics, there is limited evidence for risperidone and possibly olanzapine in the management of
aggressive and self-injurious behaviour in people with moderate to profound learning disability. If a depot is
indicated, flupentixol and zuclopenthixol have been tried.
Sexual Offending Behaviour Notes
Cyproterone acetate ££ Antilibidinal drugs (e.g. cyproterone acetate and medroxyprogesterone) which reduce testosterone levels may
Medroxyprogesterone £ be considered as an adjunct in service users with LD who show inadequate response to psychological and
Benperidol £££ behavioural strategies alone.
Benperidol is licenced the control of deviant antisocial sexual behaviour. It may be appropriate to consider an
ECG and electrolyte monitoring before treatment and periodically during treatment.
SSRIs have also been beneficial for people with less severe paraphilias including exhibitionism. In practice, high
dose fluoxetine at 60mg/day may significantly reduce libido and may be useful to manage sexual offending.
Mersey Care Clinical Guideline / Formulary Document Updated: Jan 2019
Learning Disabilities Review: Jan 2021 19 |You can also read
