5 Summary

5.1 Reviewing your work

Congratulations – now that you have completed Section 4 [Tip: hold Ctrl and click a link to open it in a new tab. (Hide tip)]   you have reached the end of this course. You may have worked through this course in a number of different ways – perhaps alone, or with a colleague or group of colleagues. You may have used the hub to share experiences and discuss your thoughts and ideas with your peers.

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During each section, you should have completed your reflection log. This will have enabled you to record and reflect on your previous experiences and current practice, and consider what changes you may make in the future. Make sure you keep a copy of this in a safe place. It is an important document because it will help you to develop your role as a practitioner, and may be useful for further study.

It’s important to recap what you have learned. In this course, you have learned about:

  • what Parkinson’s is: parkinsonism, diagnosis, progression and phases
  • the impact of both motor and non-motor symptoms
  • the impact of cognitive and communication problems
  • managing Parkinson’s, including the key issues in medicines management.

Within these areas of learning there are some key messages.

What Parkinson’s is

  • Most people with a form of parkinsonism have idiopathic Parkinson’s.
  • Other types of parkinsonism include multiple system atrophy (MSA), progressive supranuclear palsy (PSP) and vascular Parkinson’s. There are organisations that support people affected by other forms of parkinsonism.
  • Parkinson’s is progressive and can fluctuate – currently, we don’t know the cause.
  • People get Parkinson’s because some of the nerve cells in their brains that produce a chemical called dopamine have died. This lack of dopamine means that people can have great difficulty controlling movement.
  • Around 145,000 people in the UK have Parkinson’s. The average age for symptoms to appear is around 60 years old. However, in some cases, Parkinson’s is diagnosed before the age of 40 – this is known as young-onset Parkinson’s.
  • The NICE guideline recommends that if a GP suspects a patient has Parkinson’s, they should be referred to a specialist in movement disorders before any treatment is considered. This can be a neurologist or elderly care physician.
  • Diagnosis is made by a detailed clinical examination following the criteria developed by the Parkinson’s UK Brain Bank.
  • Progression follows four phases – diagnosis, maintenance, complex and palliative – but people do not always progress through each stage one after the other. The effectiveness of medication can alter people’s experiences.
  • It is important to consider the phase a person with Parkinson’s is at, rather than their age when assessing their care needs.

The impact of motor and non-motor symptoms

  • There are three main motor symptoms: slowness of movement (bradykinesia), rigidity and tremor.
  • There are many non-motor symptoms in Parkinson’s, including pain, eating and drinking difficulties, sleep problems and tiredness, memory problems, bladder and bowel problems, and mood changes.
  • Non-motor symptoms are present at all stages of the condition but they can dominate in the complex phase of Parkinson’s.
  • Always give the person plenty of time, support and patience.
  • Where appropriate, make referrals to relevant professionals.
  • Make sure the person is receiving their medication on time, every time for optimum control of their symptoms.
  • If symptoms change or worsen, arrange a medication review with their GP, specialist or Parkinson’s nurse.

The impact of cognitive and communication problems

  • Parkinson’s may affect speech in a variety of ways, including a slurring, monotone, hoarse or unsteady, or a quieter than usual voice. The rate and rhythm of speech may also be affected.
  • People with Parkinson’s can also experience slowness of thought (bradyphrenia). This means that listening and responding may take longer than usual.
  • Facial expressions may become difficult. This can give people a fixed expression (“facial masking”) or cause people to make an expression that they didn’t plan to make because of difficulty controlling facial muscles.
  • Body language can also be affected by Parkinson’s symptoms, reducing body or hand gestures, and restricting head and neck movements.
  • Difficulties with communication can be upsetting and frustrating for the person with Parkinson’s and for those around them, and can lead to misunderstandings.
  • Communication difficulties may be managed by medication, speech and language therapy and physiotherapy.
  • Many people with Parkinson’s will experience cognitive difficulties as a result of their Parkinson’s or as a side effect of their Parkinson’s medication.
  • Some of the more common cognitive problems caused by Parkinson’s include depression, anxiety, mild memory problems, Parkinson’s dementia, dementia with Lewy bodies, hallucinations and delusions.
  • Cognitive problems may cause changes in mood and motivation. These difficulties can be upsetting for the person with Parkinson’s, their family and their carer.
  • Treatments for cognitive problems vary and are specific to the problem and the individual.

Managing Parkinson’s including the key issues in medicines management

  • Everyone with Parkinson’s should have access to members of a multidisciplinary team. The team provides expert, professional help to those affected by the condition. Cooperative health and social care is essential, especially in the advanced phase.
  • Medication is usually the main treatment for Parkinson’s.
  • Make sure everyone involved in caring for a person with Parkinson’s knows how important the timing of Parkinson’s medication is. If people are unable to take their Parkinson’s medication at the right time, the balance of chemicals in their body can be severely disrupted. This leads to their Parkinson’s becoming uncontrolled, increasing their care needs considerably.
  • Where you can, encourage people with Parkinson’s to look after their own medicines. Some people are able (and will prefer) to self-administer medication.
  • Most people in the complex phase of Parkinson’s will be on some form of levodopa and/or dopamine agonist, but there are many types of drugs and people may take one or more of them.
  • Some drugs can bring on Parkinson’s-like symptoms and should be avoided unless they’re recommended by a specialist.
  • Stopping, reducing or increasing treatment should always take place in consultation with the person's specialist to avoid neuroleptic malignant syndrome (NMS), dopamine agonist withdrawal syndrome (DAWS) or dopamine dysregulation syndrome (DDS).
  • The main issues related to Parkinson’s medication include wearing off, ‘on/off’ and side effects such as dyskinesia, impulsive and compulsive behaviour, confusion and hallucinations.
  • Make sure that people with Parkinson’s and their families know that impulsive and compulsive behaviour may be a side effect of Parkinson’s medication. Also make sure they understand that these side effects can be effectively managed.
  • Surgery is not suitable for everyone. It is generally used to treat people whose symptoms can’t be controlled by drugs. Deep brain stimulation is a surgical procedure that may be offered to people with Parkinson’s.
  • Free, confidential, one-to-one support and information is available to people with Parkinson’s and their families from Parkinson’s UK local advisers.

5.2 End-of-course quiz