Parkinson's Disease in Adults

Overview

This Guidelines summary covers diagnosing, managing through pharmacological and non-pharmacological interventions, and monitoring patients in a primary care setting with Parkinson's disease.

Communication with People with Parkinson’s Disease and Their Carers

• Communication with people with Parkinson’s disease should aim towards empowering them to participate in judgements and choices about their own care
• In discussions, aim to achieve a balance between providing honest, realistic information about the condition and promoting a feeling of optimism
• Because people with Parkinson’s disease may develop impaired cognitive ability, communication problems and/or depression, provide them with:
  • both oral and written communication throughout the course of the disease, which should be individually tailored and reinforced as necessary
  • consistent communication from the professionals involved
• Give family members and carers (as appropriate) information about the condition, their entitlement to a Carer’s Assessment and the support services available
• People with Parkinson’s disease should have a comprehensive care plan agreed between the person, their family members and carers (as appropriate), and specialist and secondary healthcare providers
• Offer people with Parkinson’s disease an accessible point of contact with specialist services. This could be provided by a Parkinson’s disease nurse specialist
• Advise people with Parkinson’s disease who drive that they should inform the Driver and Vehicle Licensing Agency (DVLA) and their car insurer of their condition when Parkinson’s disease is diagnosed 

Diagnosing Parkinson’s Disease

Definition and Differential Diagnosis

• Suspect Parkinson’s disease in people presenting with tremor, stiffness, slowness, balance problems and/or gait disorders
• If Parkinson’s disease is suspected, refer people quickly and untreated to a specialist with expertise in the differential diagnosis of this condition

Clinical and Post-mortem Diagnosis

• Diagnose Parkinson’s disease clinically, based on the UK Parkinson’s Disease Society Brain Bank Clinical Diagnostic Criteria
• Encourage healthcare professionals to discuss with people with Parkinson’s disease the possibility of donating tissue to a brain bank for diagnostic confirmation and research

Review of Diagnosis

• Review the diagnosis of Parkinson’s disease regularly, and reconsider it if atypical clinical features develop. (People diagnosed with Parkinson’s disease should be seen at regular intervals of 6–12 months to review their diagnosis)

Pharmacological Management of Motor Symptoms

• Before starting treatment for people with Parkinson’s disease, discuss:
  • the person’s individual clinical circumstances, for example, their symptoms, comorbidities and risks from polypharmacy
  • the person’s individual lifestyle circumstances, preferences, needs and goals
  • the potential benefits and harms of the different drug classes (see table 1)

Table 1: Potential Benefits and Harms of Dopamine Agonists, Levodopa and MAO-B Inhibitors

• Antiparkinsonian medicines should not be withdrawn abruptly or allowed to fail suddenly due to poor absorption (for example, gastroenteritis, abdominal surgery) to avoid the potential for acute akinesia or neuroleptic malignant syndrome
• The practice of withdrawing people from their antiparkinsonian drugs (so called ‘drug holidays’) to reduce motor complications should not be undertaken because of the risk of neuroleptic malignant syndrome
• In view of the risks of sudden changes in antiparkinsonian medicines, people with Parkinson’s disease who are admitted to hospital or care homes should have their medicines:
  • given at the appropriate times, which in some cases may mean allowing self-medication
  • adjusted by, or adjusted only after discussion with, a specialist in the management of Parkinson’s disease

First-line Treatment

• Offer levodopa to people in the early stages of Parkinson’s disease whose motor symptoms impact on their quality of life
• Consider a choice of dopamine agonists, levodopa or monoamine oxidase B (MAO-B) inhibitors for people in the early stages of Parkinson’s disease whose motor symptoms do not impact on their quality of life
• Do not offer ergot-derived dopamine agonists^[A] as first-line treatment for Parkinson’s disease

Information and Support

• When starting treatment for people with Parkinson’s disease, give people and their family members and carers (as appropriate) oral and written information about the following risks, and record that the discussion has taken place:
  • impulse control disorders with all dopaminergic therapy (and the increased risk with dopamine agonists) (See recommendations 1.4.1–1.4.9 in NICE Guideline 71)
  • excessive sleepiness and sudden onset of sleep with dopamine agonists (See recommendations 1.5.1–1.5.3 in NICE Guideline 71)
  • psychotic symptoms (hallucinations and delusions) with all Parkinson’s disease treatments (and the higher risk with dopamine agonists) (See recommendations 1.5.12–1.5.21 in NICE Guideline 71)

Adjuvant Treatment of Motor Symptoms

• If a person with Parkinson’s disease has developed dyskinesia and/or motor fluctuations, including medicines ‘wearing off’, seek advice from a healthcare professional with specialist expertise in Parkinson’s disease before modifying therapy
• Offer a choice of dopamine agonists, MAO-B inhibitors or catechol-O-methyl transferase (COMT) inhibitors as an adjunct to levodopa for people with Parkinson’s disease who have developed dyskinesia or motor fluctuations despite optimal levodopa therapy, after discussing:
  • the person’s individual clinical circumstances, for example, their Parkinson’s disease symptoms, comorbidities and risks from polypharmacy
  • the person’s individual lifestyle circumstances, preferences, needs and goals 
  • the potential benefits and harms of the different drug classes (see table 2)

Table 2: Potential Benefits and Harms of Dopamine Agonists, MAO-B Inhibitors, COMT Inhibitors and Amantadine

• Choose a non-ergot-derived dopamine agonist in most cases, because of the monitoring that is needed with ergot-derived dopamine agonists^[B]
• Only consider an ergot-derived dopamine agonist^[B] as an adjunct to levodopa for people with Parkinson’s disease:
  • who have developed dyskinesia or motor fluctuations despite optimal levodopa therapy and
  • whose symptoms are not adequately controlled with a non-ergot-derived dopamine agonist
• If dyskinesia is not adequately managed by modifying existing therapy, consider amantadine
• Do not offer anticholinergics to people with Parkinson’s disease who have developed dyskinesia and/or motor fluctuations

Managing and Monitoring Impulse Control Disorders as an Adverse Effect of Dopaminergic Therapy

Predictors for the Development of Impulse Control Disorders

• Recognise that impulse control disorders can develop in a person with Parkinson’s disease who is on any dopaminergic therapy at any stage in the disease course
• Recognise that the following are associated with an increased risk of developing impulse control disorders:
  • dopamine agonist therapy
  • a history of previous impulsive behaviours
  • a history of alcohol consumption and/or smoking

Information and Support

• When starting dopamine agonist therapy, give people and their family members and carers (as appropriate) oral and written information about the following, and record that the discussion has taken place:
  • the increased risk of developing impulse control disorders when taking dopamine agonist therapy, and that these may be concealed by the person affected
  • the different types of impulse control disorders (for example, compulsive gambling, hypersexuality, binge eating and obsessive shopping)
  • who to contact if impulse control disorders develop
  • the possibility that if problematic impulse control disorders develop, dopamine agonist therapy will be reviewed and may be reduced or stopped
• Discuss potential impulse control disorders at review appointments, particularly when modifying therapy, and record that the discussion has taken place
• Be aware that impulse control disorders can also develop while taking dopaminergic therapies other than dopamine agonists

Managing Dopaminergic Therapy in People Who Have Developed an Impulse Control Disorder

• If a person with Parkinson’s disease has developed a problematic impulse control disorder, seek advice from a healthcare professional with specialist expertise in Parkinson’s disease before modifying dopaminergic therapy
• Discuss the following with the person and their family members and carers (as appropriate):
  • how the impulse control disorder is affecting their life
  • possible treatments, such as reducing or stopping dopaminergic therapy
  • the benefits and disadvantages of reducing or stopping dopaminergic therapy
• When managing impulse control disorders, modify dopaminergic therapy by first gradually reducing any dopamine agonist. Monitor whether the impulse control disorder improves and whether the person has any symptoms of dopamine agonist withdrawal
• Offer specialist cognitive behavioural therapy targeted at impulse control disorders if modifying dopaminergic therapy is not effective

Pharmacological Management of Non-motor Symptoms

Daytime Sleepiness

• Advise people with Parkinson’s disease who have daytime sleepiness and/or sudden onset of sleep not to drive (and to inform the DVLA of their symptoms) and to think about any occupation hazards. Adjust their medicines to reduce its occurrence, having first sought advice from a healthcare professional with specialist expertise in Parkinson’s disease
• Consider modafinil to treat excessive daytime sleepiness in people with Parkinson’s disease, only if a detailed sleep history has excluded reversible pharmacological and physical causes
• At least every 12 months, a healthcare professional with specialist expertise in Parkinson’s disease should review people with Parkinson’s disease who are taking modafinil

Rapid Eye Movement Sleep Behaviour Disorder

• Take care to identify and manage restless leg syndrome and rapid eye movement sleep behaviour disorder (RBD) in people with Parkinson’s disease and sleep disturbance
• Consider clonazepam or melatonin to treat RBD if a medicines review has addressed possible pharmacological causes^[B]

Nocturnal Akinesia

• Consider levodopa or oral dopamine agonists to treat nocturnal akinesia in people with Parkinson’s disease. If the selected option is not effective or not tolerated, offer the other instead
• Consider rotigotine if levodopa and/or oral dopamine agonists are not effective in treating nocturnal akinesia

Orthostatic Hypotension

• If a person with Parkinson’s disease has developed orthostatic hypotension, review the person’s existing medicines to address possible pharmacological causes, including:
  • antihypertensives (including diuretics)
  • dopaminergics
  • anticholinergics
  • antidepressants
• Consider midodrine for people with Parkinson’s disease and orthostatic hypotension, taking into account the contraindications and monitoring requirements (including monitoring for supine hypertension)
• If midodrine is contraindicated, not tolerated or not effective, consider fludrocortisone^[B] (taking into account its safety profile, in particular its cardiac risk and potential interactions with other medicines)

Depression

Psychotic Symptoms (Hallucinations and Delusions)

• At review appointments and following medicines changes, ask people with Parkinson’s disease and their family members and carers (as appropriate) if the person is experiencing hallucinations (particularly visual) or delusions
• Perform a general medical evaluation for people with hallucinations or delusions, and offer treatment for any conditions that might have triggered them
• Do not treat hallucinations and delusions if they are well tolerated by the person with Parkinson’s disease and their family members and carers (as appropriate)
• Reduce the dosage of any Parkinson’s disease medicines that might have triggered hallucinations or delusions, taking into account the severity of symptoms and possible withdrawal effects. Seek advice from a healthcare professional with specialist expertise in Parkinson’s disease before modifying therapy
• Consider quetiapine^[B] to treat hallucinations and delusions in people with Parkinson’s disease who have no cognitive impairment
• If standard treatment is not effective, offer clozapine to treat hallucinations and delusions in people with Parkinson’s disease. Be aware that registration with a patient monitoring service is needed
• Be aware that lower doses of quetiapine^[B] and clozapine are needed for people with Parkinson’s disease than in other indications
• Do not offer olanzapine to treat hallucinations and delusions in people with Parkinson’s disease
• Recognise that other antipsychotic medicines (such as phenothiazines and butyrophenones) can worsen the motor features of Parkinson’s disease
• For guidance on hallucinations and delusions in people with dementia, see interventions for non-cognitive symptoms and behaviour that challenges in people with dementia in the NICE guideline on dementia

Parkinson’s Disease Dementia

• Offer a cholinesterase inhibitor^[C] for people with mild or moderate Parkinson’s disease dementia
• Consider a cholinesterase inhibitor^[B]  for people with severe Parkinson’s disease dementia
• Consider memantine^[B] for people with Parkinson’s disease dementia, only if cholinesterase inhibitors are not tolerated or are contraindicated
• For guidance on assessing and managing dementia, and supporting people living with dementia, see the NICE guideline on dementia

Drooling of Saliva

• Only consider pharmacological management for drooling of saliva in people with Parkinson’s disease if non-pharmacological management (for example, speech and language therapy) is not available or has not been effective
• Consider glycopyrronium bromide^[B] to manage drooling of saliva in people with Parkinson’s disease
• If treatment for drooling of saliva with glycopyrronium bromide^[B] is not effective, not tolerated or contraindicated (for example, in people with cognitive impairment, hallucinations or delusions, or a history of adverse effects following anticholinergic treatment), consider referral to a specialist service for botulinum toxin A^[B]
• Only consider anticholinergic medicines other than glycopyrronium bromide^[B] to manage drooling of saliva in people with Parkinson’s disease if their risk of cognitive adverse effects is thought to be minimal. Use topical preparations if possible (for example, atropine) to reduce the risk of adverse events

Pharmacological Neuroprotective Therapy

• Do not use vitamin E as a neuroprotective therapy for people with Parkinson’s disease
• Do not use co-enzyme Q10 as a neuroprotective therapy for people with Parkinson’s disease, except in the context of clinical trials
• Do not use dopamine agonists as neuroprotective therapies for people with Parkinson’s disease, except in the context of clinical trials
• Do not use MAO-B inhibitors as neuroprotective therapies for people with Parkinson’s disease, except in the context of clinical trials

Non-pharmacological Management of Motor and Non-motor Symptoms

Parkinson’s Disease Nurse Specialist Interventions

• People with Parkinson’s disease should have regular access to:
  • clinical monitoring and medicines adjustment
  • a continuing point of contact for support, including home visits when appropriate
  • a reliable source of information about clinical and social matters of concern to people with Parkinson’s disease and their family members and their carers (as appropriate), which may be provided by a Parkinson’s disease nurse specialist

Physiotherapy and Physical Activity

• Consider referring people who are in the early stages of Parkinson’s disease to a physiotherapist with experience of Parkinson’s disease for assessment, education and advice, including information about physical activity
• Offer Parkinson’s disease-specific physiotherapy for people who are experiencing balance or motor function problems
• Consider the Alexander Technique for people with Parkinson’s disease who are experiencing balance or motor function problems

Occupational Therapy

• Consider referring people who are in the early stages of Parkinson’s disease to an occupational therapist with experience of Parkinson’s disease for assessment, education and advice on motor and non-motor symptoms
• Offer Parkinson’s disease-specific occupational therapy for people who are having difficulties with activities of daily living

Speech and Language Therapy

• Consider referring people who are in the early stages of Parkinson’s disease to a speech and language therapist with experience of Parkinson’s disease for assessment, education and advice
• Offer speech and language therapy for people with Parkinson’s disease who are experiencing problems with communication, swallowing or saliva. This should include:
  • strategies to improve the safety and efficiency of swallowing to minimise the risk of aspiration, such as expiratory muscle strength training (EMST)
  • strategies to improve speech and communication, such as attention to effort therapies
• Consider referring people for alternative and augmentative communication equipment that meets their communication needs as Parkinson’s disease progresses and their needs change

Nutrition

• Consider referring people with Parkinson’s disease to a dietitian for specialist advice
• Discuss a diet in which most of the protein is eaten in the final main meal of the day (a protein redistribution diet) for people with Parkinson’s disease on levodopa who experience motor fluctuations
• Advise people with Parkinson’s disease to avoid a reduction in their total daily protein consumption
• Advise people with Parkinson’s disease to take a vitamin D supplement. See the NICE guideline on vitamin D for recommendations on vitamin D testing, and the NICE guidelines on falls in older people and osteoporosis
• Do not offer creatine supplements to people with Parkinson’s disease
• Advise people with Parkinson’s disease not to take over-the-counter dietary supplements without first consulting their pharmacist or other healthcare professional

Palliative Care

Information and Support

• Offer people with Parkinson’s disease and their family members and carers (as appropriate) opportunities to discuss the prognosis of their condition. These discussions should promote people’s priorities, shared decision-making and patient-centred care
• Offer people with Parkinson’s disease and their family members and carers (as appropriate) oral and written information about the following, and record that the discussion has taken place:
  • progression of Parkinson’s disease
  • possible future adverse effects of Parkinson’s disease medicines in advanced Parkinson’s disease
  • advance care planning, including Advance Decisions to Refuse Treatment (ADRT) and Do Not Attempt Resuscitation (DNACPR) orders, and Lasting Power of Attorney for finance and/or health and social care
  • options for future management
  • what could happen at the end of life
  • available support services, for example, personal care, equipment and practical support, financial support and advice, care at home and respite care
• When discussing palliative care, recognise that family members and carers may have different information needs from the person with Parkinson’s disease

Referral

• Consider referring people at any stage of Parkinson’s disease to the palliative care team to give them and their family members or carers (as appropriate) the opportunity to discuss palliative care and care at the end of life

Footnotes

[A] Medicines and Healthcare Products Regulatory Agency guidance (Drug safety update: volume 1, issue 12 2008) recommended warnings and contraindications for ergot-derived dopamine agonists as a result of the risk of fibrosis, particularly cardiac fibrosis, associated with chronic use. The risk of cardiac fibrosis is higher with cabergoline and pergolide than with the other ergot-derived dopamine agonists. Ergot-derived dopamine agonists should not be given to people who have had fibrosis in the heart, lungs or abdomen. Cabergoline, pergolide and bromocriptine are contraindicated for people with evidence of valve problems, and cabergoline and pergolide are restricted to second-line use in Parkinson’s disease. Absence of cardiac fibrosis should be verified before treatment is started, and people must be monitored for signs of fibrosis on echocardiography before treatment is started, and then regularly during treatment

[B] At the time of publication (July 2017) this medicine did not have a UK marketing authorisation for this indication. The prescriber should follow relevant professional guidance, taking full responsibility for the decision. Informed consent should be obtained and documented. See the General Medical Council’s Prescribing guidance: prescribing unlicensed medicines for further information

[C] At the time of publication (July 2017), rivastigmine capsules are the only treatment with a UK marketing authorisation for this indication. Donepezil, galantamine and rivastigmine patches did not have a UK marketing authorisation for this indication. The prescriber should follow relevant professional guidance, taking full responsibility for the decision. Informed consent should be obtained and documented. See the General Medical Council’s Prescribing guidance: prescribing unlicensed medicines for further information.