Recommendations | Parkinson’s disease in adults | Guidance

1.1 Communication with people with Parkinson's disease and their carers

1.1.1

Communication with people with Parkinson's disease should aim towards empowering them to participate in judgements and choices about their own care. [2006]

1.1.2

In discussions, aim to achieve a balance between providing honest, realistic information about the condition and promoting a feeling of optimism. [2006]

1.1.3

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. [2006]

1.1.4

Advise family members and carers about their right to carer assessment, and assessment for respite care and other support.

See the NICE guideline on supporting adult carers for recommendations on identifying, assessing and meeting the caring, physical and mental health needs of families and carers. [2006]

1.1.5

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. [2006]

1.1.6

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. [2006]

1.1.7

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. [2006]

1.2 Diagnosing Parkinson's disease

Definition and differential diagnosis

1.2.1

Suspect Parkinson's disease in people presenting with tremor, stiffness, slowness, balance problems and/or gait disorders. [2006]

1.2.2

If Parkinson's disease is suspected, refer people quickly and untreated to a specialist with expertise in the differential diagnosis of this condition. [2006, amended 2017]

Clinical and post-mortem diagnosis

1.2.3

Diagnose Parkinson's disease clinically, based on the UK Parkinson's Disease Society Brain Bank Clinical Diagnostic Criteria. [2006]

1.2.4

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. [2006]

Review of diagnosis

1.2.5

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 to 12 months to review their diagnosis.) [2006]

Single photon emission computed tomography

1.2.6

Consider ¹²³I‑FP‑CIT single photon emission computed tomography (SPECT) for people with tremor if essential tremor cannot be clinically differentiated from parkinsonism. [2006, amended 2017]

1.2.7

¹²³I‑FP‑CIT SPECT should be available to specialists with expertise in its use and interpretation. [2006]

Positron emission tomography

1.2.8

Do not use positron emission tomography (PET) in the differential diagnosis of parkinsonian syndromes, except in the context of clinical trials. [2006, amended 2017]

Structural MRI

1.2.9

Do not use structural MRI to diagnose Parkinson's disease. [2006, amended 2017]

1.2.10

Structural MRI may be considered in the differential diagnosis of other parkinsonian syndromes. [2006]

Magnetic resonance volumetry

1.2.11

Do not use magnetic resonance volumetry in the differential diagnosis of parkinsonian syndromes, except in the context of clinical trials. [2006, amended 2017]

Magnetic resonance spectroscopy

1.2.12

Do not use magnetic resonance spectroscopy in the differential diagnosis of parkinsonian syndromes. [2006, amended 2017]

Acute levodopa and apomorphine challenge tests

1.2.13

Do not use acute levodopa and apomorphine challenge tests in the differential diagnosis of parkinsonian syndromes. [2006, amended 2017]

Objective smell testing

1.2.14

Do not use objective smell testing in the differential diagnosis of parkinsonian syndromes, except in the context of clinical trials. [2006, amended 2017]

1.3 Pharmacological management of motor symptoms

1.3.1

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). [2017]

**Table 1 Potential benefits and harms of dopamine agonists, levodopa and MAO‑B inhibitors**
-	Levodopa	Dopamine agonists	Monoamine oxidase‑B (MAO‑B) inhibitors
Motor symptoms	More improvement in motor symptoms	Less improvement in motor symptoms	Less improvement in motor symptoms
Activities of daily living	More improvement in activities of daily living	Less improvement in activities of daily living	Less improvement in activities of daily living
Motor complications	More motor complications	Fewer motor complications	Fewer motor complications
Adverse events	Fewer specified adverse events	More specified adverse events	Fewer specified adverse events

1.3.2

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. [2006]

1.3.3

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. [2006]

1.3.4

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. [2006]

First-line treatment

1.3.5

Offer levodopa to people in the early stages of Parkinson's disease whose motor symptoms impact on their quality of life. [2017]

1.3.6

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. [2017]

1.3.7

Do not offer ergot-derived dopamine agonists as first-line treatment for Parkinson's disease. [2017]

Follow the Medicines and Healthcare products Regulatory Agency guidance on the warnings and contraindications for ergot-derived dopamine agonists.

Information and support

1.3.8

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). Also see recommendations in the section on managing and monitoring impulse control disorders as an adverse effect of dopaminergic therapy
Excessive sleepiness and sudden onset of sleep with dopamine agonists. Also see recommendations on daytime sleepiness in the section on pharmacological management of non-motor symptoms
Psychotic symptoms (hallucinations and delusions) with all Parkinson's disease treatments (and the higher risk with dopamine agonists). Also see the recommendations on psychotic symptoms (hallucinations and delusions) in the section on pharmacological management of non-motor symptoms. [2017]

Adjuvant treatment of motor symptoms

1.3.9

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. [2017]

1.3.10

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). [2017]

Table 2 Potential benefits and harms of dopamine agonists, MAO‑B inhibitors, COMT inhibitors and amantadine

-	Dopamine agonists	Monoamine oxidase-B (MAO‑B) inhibitors	Catechol-O-methyl transferase (COMT) inhibitors	Amantadine
Motor symptoms	Improvement in motor symptoms	Improvement in motor symptoms	Improvement in motor symptoms	No evidence of improvement in motor symptoms
Activities of daily living	Improvement in activities of daily living	Improvement in activities of daily living	Improvement in activities of daily living	No evidence of improvement in activities of daily living
Off time	More off‑time reduction	Off‑time reduction	Off‑time reduction	No studies reporting this outcome
Adverse events	Intermediate risk of adverse events	Fewer adverse events	More adverse events	No studies reporting this outcome
Hallucinations	More risk of hallucinations	Lower risk of hallucinations	Lower risk of hallucinations	No studies reporting this outcome

1.3.11

Choose a non-ergot-derived dopamine agonist in most cases, because of the monitoring that is needed with ergot-derived dopamine agonists. [2017]

Follow the Medicines and Healthcare products Regulatory Agency guidance on the warnings and contraindications for ergot-derived dopamine agonists.

1.3.12

Only consider an ergot-derived dopamine agonist 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. [2017]

Follow the Medicines and Healthcare products Regulatory Agency guidance on the warnings and contraindications for ergot-derived dopamine agonists.

1.3.13

If dyskinesia is not adequately managed by modifying existing therapy, consider amantadine. [2017]

1.3.14

Do not offer anticholinergics to people with Parkinson's disease who have developed dyskinesia and/or motor fluctuations. [2017]

1.4 Managing and monitoring impulse control disorders as an adverse effect of dopaminergic therapy

Predictors for the development of impulse control disorders

1.4.1

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. [2017]

1.4.2

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. [2017]

Information and support

1.4.3

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. [2017]

1.4.4

Discuss potential impulse control disorders at review appointments, particularly when modifying therapy, and record that the discussion has taken place. [2017]

1.4.5

Be aware that impulse control disorders can also develop while taking dopaminergic therapies other than dopamine agonists. [2017]

Managing dopaminergic therapy in people who have developed an impulse control disorder

1.4.6

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. [2017]

1.4.7

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. [2017]

1.4.8

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. [2017]

1.4.9

Offer specialist cognitive behavioural therapy targeted at impulse control disorders if modifying dopaminergic therapy is not effective. [2017]

1.5 Pharmacological management of non-motor symptoms

Daytime sleepiness

1.5.1

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. [2017]

1.5.2

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. [2017]

Women who are pregnant or who are planning a pregnancy should not take modafinil, in line with the MHRA safety advice on modafinil.

1.5.3

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. [2017]

Women who are pregnant or who are planning a pregnancy should not take modafinil, in line with the MHRA safety advice on modafinil.

Restless leg syndrome and rapid eye movement sleep behaviour disorder

1.5.4

Take care to identify and manage restless leg syndrome and rapid eye movement sleep behaviour disorder in people with Parkinson's disease and sleep disturbance. [2017]

1.5.5

Consider clonazepam or melatonin to treat rapid eye movement sleep behaviour disorder if a medicines review has addressed possible pharmacological causes. [2017]

For guidance on safe prescribing of benzodiazapines (such as clonazepam) and managing withdrawal, see NICE's guideline on medicines associated with dependence or withdrawal symptoms.

In July 2017, this was an off-label use of clonazepam and melatonin. See NICE's information on prescribing medicines.

Nocturnal akinesia

1.5.6

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. [2017]

1.5.7

Consider rotigotine if levodopa and/or oral dopamine agonists are not effective in treating nocturnal akinesia. [2017]

Orthostatic hypotension

1.5.8

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. [2017]

1.5.9

Consider midodrine for people with Parkinson's disease and orthostatic hypotension, taking into account the contraindications and monitoring requirements (including monitoring for supine hypertension). [2017]

1.5.10

If midodrine is contraindicated, not tolerated or not effective, consider fludrocortisone (taking into account its safety profile, in particular its cardiac risk and potential interactions with other medicines). [2017]

In July 2017, this was an off-label use of fludrocortisone. See NICE's information on prescribing medicines.

Depression

1.5.11

For guidance on identifying, treating and managing depression in people with Parkinson's disease, see the NICE guideline on depression in adults with a chronic physical health problem. [2017]

Psychotic symptoms (hallucinations and delusions)

In July 2017, the use of quetiapine in recommendations 1.5.16 and 1.5.18 was off-label. See NICE's information on prescribing medicines.

1.5.12

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. [2017]

1.5.13

Perform a general medical evaluation for people with hallucinations or delusions, and offer treatment for any conditions that might have triggered them. [2017]

1.5.14

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). [2017]

1.5.15

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. [2017]

1.5.16

Consider quetiapine to treat hallucinations and delusions in people with Parkinson's disease who have no cognitive impairment. [2017]

1.5.17

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. [2017]

1.5.18

Be aware that lower doses of quetiapine and clozapine are needed for people with Parkinson's disease than in other indications. [2017]

1.5.19

Do not offer olanzapine to treat hallucinations and delusions in people with Parkinson's disease. [2017]

1.5.20

Recognise that other antipsychotic medicines (such as phenothiazines and butyrophenones) can worsen the motor features of Parkinson's disease. [2017]

1.5.21

For guidance on hallucinations and delusions in people with dementia, see the section on managing non-cognitive symptoms in the NICE guideline on dementia. [2017]

Parkinson's disease dementia

1.5.22

Offer a cholinesterase inhibitor for people with mild or moderate Parkinson's disease dementia. [2017]

In July 2017, rivastigmine capsules are the only treatment with a UK marketing authorisation for this indication. Use of donepezil, galantamine and rivastigmine patches was off-label. See NICE's information on prescribing medicines.

1.5.23

Consider a cholinesterase inhibitor for people with severe Parkinson's disease dementia. [2017]

In July 2017, this was an off-label use of cholinesterase inhibitors. See NICE's information on prescribing medicines.

1.5.24

Consider memantine for people with Parkinson's disease dementia, only if cholinesterase inhibitors are not tolerated or are contraindicated. [2017]

In July 2017, this was an off-label use of memantine. See NICE's information on prescribing medicines.

1.5.25

For guidance on assessing and managing dementia, and supporting people living with dementia, see the NICE guideline on dementia. [2017]

Drooling of saliva

In July 2017, use of glycopyrronium bromide in recommendations 1.5.27, 1.5.28 and 1.5.29 was off-label.

In September 2019, Xeomin was the only preparation of botulinum toxin A (recommendation 1.5.28) licensed in the UK for treating chronic sialorrhoea caused by neurological conditions in adults. Use of other preparation of botulinum toxin type A was off-label.

See NICE's information on prescribing medicines.

1.5.26

Only consider pharmacological management for drooling of saliva in people with Parkinson's disease if non-pharmacological management (for example, speech and language therapy; see recommendation 1.7.8) is not available or has not been effective. [2017]

1.5.27

Consider glycopyrronium bromide to manage drooling of saliva in people with Parkinson's disease. [2017]

1.5.28

If treatment for drooling of saliva with glycopyrronium bromide 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. [2017]

1.5.29

Only consider anticholinergic medicines other than glycopyrronium bromide 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. [2017]

1.6 Pharmacological neuroprotective therapy

1.6.1

Do not use vitamin E as a neuroprotective therapy for people with Parkinson's disease. [2006, amended 2017]

1.6.2

Do not use co‑enzyme Q10 as a neuroprotective therapy for people with Parkinson's disease, except in the context of clinical trials. [2006, amended 2017]

1.6.3

Do not use dopamine agonists as neuroprotective therapies for people with Parkinson's disease, except in the context of clinical trials. [2006, amended 2017]

1.6.4

Do not use MAO‑B inhibitors as neuroprotective therapies for people with Parkinson's disease, except in the context of clinical trials. [2006, amended 2017]

1.7 Non-pharmacological management of motor and non-motor symptoms

Parkinson's disease nurse specialist interventions

1.7.1

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. [2006]

Physiotherapy and physical activity

1.7.2

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. [2017]

1.7.3

Offer Parkinson's disease-specific physiotherapy for people who are experiencing balance or motor function problems. [2017]

1.7.4

Consider the Alexander Technique for people with Parkinson's disease who are experiencing balance or motor function problems. [2017]

Occupational therapy

1.7.5

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. [2017]

1.7.6

Offer Parkinson's disease-specific occupational therapy for people who are having difficulties with activities of daily living. [2017]

Speech and language therapy

1.7.7

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. [2017]

1.7.8

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. [2017]

1.7.9

Consider referring people for alternative and augmentative communication equipment that meets their communication needs as Parkinson's disease progresses and their needs change. [2017]

Nutrition

1.7.10

Consider referring people with Parkinson's disease to a dietitian for specialist advice. [2017]

1.7.11

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. [2017]

1.7.12

Advise people with Parkinson's disease to avoid a reduction in their total daily protein consumption. [2017]

1.7.13

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. [2017]

1.7.14

Do not offer creatine supplements to people with Parkinson's disease. [2017]

1.7.15

Advise people with Parkinson's disease not to take over-the-counter dietary supplements without first consulting their pharmacist or other healthcare professional. [2017]

1.8 Deep brain stimulation and levodopa–carbidopa intestinal gel

Deep brain stimulation

1.8.1

Offer people with advanced Parkinson's disease best medical therapy, which may include intermittent apomorphine injection and/or continuous subcutaneous apomorphine infusion. [2017]

1.8.2

Do not offer deep brain stimulation to people with Parkinson's disease whose symptoms are adequately controlled by best medical therapy. [2017]

1.8.3

Consider deep brain stimulation for people with advanced Parkinson's disease whose symptoms are not adequately controlled by best medical therapy. [2017]

Levodopa–carbidopa intestinal gel

1.8.4

Levodopa–carbidopa intestinal gel is currently available through an NHS England clinical commissioning policy. It is recommended that this policy is reviewed in light of this guidance. [2017]

1.9 Palliative care

Information and support

1.9.1

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. [2017]

1.9.2

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. [2017]

1.9.3

When discussing palliative care, recognise that family members and carers may have different information needs from the person with Parkinson's disease. [2017]

Referral

1.9.4

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. [2017]