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5 Summary
5.1 Reviewing your work
Congratulations – now that you have completed Section 4 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.
Transcript
You can download this resource and view it offline. It may be useful as part of a group activity.
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
You may want to review all or particular parts of the course before taking the final test. You need to take the quiz to earn the badge, but it is also important to review the course for your learning.
It may also be helpful to review your reflection log before taking the final test. This will remind you of your thoughts on particular areas of learning and practice.
Now try the end-of-course quiz.
Consolidating your learning
Everything you have learned in this course is important for your practice. How you apply this knowledge to your role will determine how well you can provide support to improve the lives of people affected by Parkinson’s and their families.
If you are a nurse working in a hospital or a care/nursing home, understanding how vital the timing of medication is will improve the lives of your patients/residents. If you are a therapist, understanding why your client has a blank expression will enable you to communicate more effectively with them. If you are a carer working in a residential setting or supporting people in their own homes, understanding how to best support someone who has frozen will help both you and them.
There are many more examples we could give here. You know your own role and how best to use the knowledge gained from the course to make positive practical changes.
5.3 Feedback and find out more
The Open University is committed to supporting students from a wide range of backgrounds and circumstances. The Parkinson’s Excellence Network brings together health and social care professionals to transform care for people affected by Parkinson’s.
It would be great to receive your feedback about this course. We are keen to know about the parts you found useful and where you feel we can improve. You can post your views on our short survey – thank you in advance for completing it.
The Parkinson’s Excellence Network offers resources to support service improvement and engage people affected by Parkinson's, comprehensive information about education and training, and collaboration opportunities. We recommend that you visit the website and sign up for the newsletter to receive regular updates.
Find out more: http://www.parkinsons.org.uk/ professionals/ uk-parkinsons-excellence-network
References
The following references relate to this course from the original award-winning learning programme, ‘Understanding Parkinson’s for health and social care staff’ programme.
Funayama M et al (2022) 'Molecular genetics of Parkinson’s disease: Contributions and global trends', Journal of Human Genetics. Available at https://doi.org/10.1038/s10038-022-01058-5
Lang AE and Obeso JA (2004) ‘Challenges in Parkinson's disease: restoration of the nigrostriatal dopamine system is not enough’ The Lancet Neurology; 3(5):309–316
MacMahon DG, Thomas S, Campbell (1999) ‘Validation of pathways paradigm for the management of PD’, Parkinsonism & Related. Disorders;5:S53
Clinical Practice Research Datalink (CPRD) 2022
NICE, Diagnosis of Parkinson's disease (2022). Available at https://cks.nice.org.uk/topics/parkinsons-disease/diagnosis [Accessed September 2022]
Ho, A K et al (2008) ‘For better or worse: The effect of levodopa on speech in Parkinson's disease’, Movement Disorders; 23(4):574–80
Dashtipour K et al (2018) ‘Speech disorders in Parkinson's disease: pathophysiology, medical management and surgical approaches’. Neurodegenerative Disease Management. doi: 10.2217/nmt-2018-0021 [Accessed September 2022]
Jankovic J (2008) ‘Parkinson's disease: clinical features and diagnosis’, Journal of Neurology, Neurosurgery and Psychiatry; 79(4):368–76
Schapira AH et al (2009) ‘Levodopa in the treatment of Parkinson's disease’, European Journal of Neurology; 16(9):982–9
Zarotti, N., Eccles, F.J.R., Foley, J.A., Paget, A., Gunn, S., Leroi, I. and Simpson, J. (2021), Psychological interventions for people with Parkinson’s disease in the early 2020s: Where do we stand?. Psychol Psychother Theory Res Pract, 94: 760-797. https://doi.org/10.1111/papt.12321
Won JH et al (2021) 'Risk and mortality of aspiration pneumonia in Parkinson's disease: a nationwide database study'. Sci Rep. 2021 Mar 23;11(1):6597. doi: 10.1038/s41598-021-86011-w
National Institute for Health and Care Excellence, Parkinson's disease in adults: NICE guideline [NG71] overview (2017). Available at https://www.nice.org.uk/guidance/ng71 [Accessed September 2022]
National Institute for Health and Care Excellence, Parkinson’s disease in adults: diagnosis and management (2017). Available at https://www.nice.org.uk/ guidance/ NG71 [Accessed September 2022]
NICE Parkinson's disease quality standard [QS164] (2018). Available at https://www.nice.org.uk/ guidance/ qs164 [Accessed September 2022]
Acknowledgements
This course is based on an award-winning learning programme, Understanding Parkinson’s for health and social care staff programme. The learning programme was developed by Fiona Barrett (formerly Parkinson’s UK) and much of the material in the elearning programme and guide was drawn and adapted from existing Parkinson’s UK resources originally developed for use by people with Parkinson’s, with additional material and activities developed by education staff. These resources were developed using consultation with people affected by Parkinson’s and health and social care professionals. The professionals consulted were from several disciplines including Parkinson’s specialist nurses. There was also input from two volunteers: Gary Hattie from Scottish Borders Group and Martin McGeehan from the Interclyde group, to support the Learning Programme. Our thanks and appreciations go to both for their invaluable insight and thoughtful comments during the development process.
This course was adapted from the learning programme and was developed by Claire Hewitt (Parkinson’s UK) with assistance from Pete Cannell and Ronald Macintyre (The Open University) as part of the Opening Educational Practices in Scotland Project.
Particular thanks and appreciation go to the J. Macdonald Menzies Trust, which provided the funding to enable the development of the learning programme and this course.
The following materials in this course are All Rights Reserved. Please apply to the copyright holder to reuse these materials:
All images and figures in this course belong to Parkinson’s UK. Please contact Parkinson’s UK if you wish to reuse any of the images.
The animated table ‘The phases of Parkinson’s’ in Section 1.9 is adapted from a table in Understanding Parkinson’s for health and social care staff – resource book, which came from:
- MacMahon, D.G. and Thomas, S. (1998) ‘Practical approach to quality of life in Parkinson’s disease’, Journal of Neurology, 245 (suppl 1) S19–22.
- MacMahon, D.G., Thomas, S. and Campbell, S. (1999) ‘Validation of pathways paradigm for the management of PD’, Parkinsonism & Related Disorders, 5:S53.
All videos in this course belong to Parkinson’s UK. Please contact Parkinson’s UK if you wish to reuse any of the videos.
Except for third party materials and otherwise stated in the acknowledgements section, this content is made available under a Creative Commons Attribution-NonCommercial-ShareAlike 4.0 Licence.
Don’t miss out:
The Parkinson’s Excellence Network is working to transform health and care services for people with Parkinson's across the UK.
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Better support, better services, better care. Every day. Together, we are transforming Parkinson’s care.
The Excellence Network is supported, funded and facilitated by Parkinson’s UK.
Whether you’re living with Parkinson’s, caring for someone that does or would just like to learn more, you can help improve Parkinson’s care.
Join us to access resources, shape Parkinson’s care and collaborate with the Parkinson's community to transform health and care services.
Visit the Parkinson’s Excellence Network.