In this article…
- An overview of Parkinson’s disease and its treatment
- The role of specialist nurses in managing the condition
- Key advice on nursing care
Patsy Cotton is advanced nurse practitioner in Parkinson’s disease and movement disorder, Salford Royal Foundation Trust; Daiga Heisters is head of professional engagement and education, Parkinson’s UK.
Cotton P, Heisters D (2012) How to care for people with Parkinson’s disease. Nursing Times; 108: 16, 12-13.
Parkinson’s disease is a complex and debilitating neurological condition that requires nursing care that is tailored to the individual.
This article provides an overview of the condition, discusses the role of Parkinson’s specialist nurses and gives advice on care.
Keywords: Parkinson’s disease/Specialist nurses/Drug treatment
- This article has been double-blind peer reviewed
- Figures and tables can be seen in the attached print-friendly PDF file of the complete article
5 key points
- Around one in 20 people with Parkinson’s are under the age of 40
- The combination of motor and non-motor symptoms can make it difficult to carry out many activities of daily living
- Patients need to receive drugs on time to give optimal symptom control
- Parkinson’s nurses help patients to manage medications, offer advice and information and provide emotional support
- The way in which the condition affects patients can vary from hour to hour and day to day
Parkinson’s disease is a progressive neurological condition that impairs movement and is recognised as a movement disorder. It is the result of insufficient dopamine, which is caused because nerve cells in the brain that produce this chemical have died. Without dopamine, movements become slower, so people with Parkinson’s take longer to do things than others (National Institute for Health and Clinical Excellence, 2006).
The condition was first described in 1817 by James Parkinson, in his essay The Shaking Palsy (Morris and Rose, 1989).
Although it is not yet known exactly why people develop Parkinson’s, researchers suspect it is a combination of genetic and environmental factors that cause the dopamine-producing nerve cells to die (Stoessl, 1999).
Incidence and prevalence
There are around 127,000 people with Parkinson’s in the UK, which is around one in 500 people (Parkinson’s UK, 2012).
Although the condition is often associated with older people, around one in 20 people with Parkinson’s are under the age of 40 when diagnosed (Parkinson’s UK, 2007). By 2020, it is expected that around 162,000 people will be living with the condition – an increase of 28%, based on ageing population estimates (UK National Statistics, 2012).
The condition is diagnosed clinically and should be done by a Parkinson’s specialist, taking into account the medical history.
This is often investigated after the appearance of early symptoms such as tremor, slowness of movement, difficulties with handwriting, loss of sense of smell or difficulties in making facial expressions.
A DaTSCAN is often used to distinguish between Parkinson’s and essential tremor and Parkinson’s plus syndromes. However, this investigation cannot give a definitive diagnosis of idiopathic Parkinson’s – the most common form of the disease – and will only help if the diagnosis is uncertain. The DaTSCAN, which takes images of the brain after the patient has been injected with a neuro-imaging drug, is not available in all parts of the country.
Signs and symptoms
The symptoms most often associated with Parkinson’s are tremor (typically occurring at rest), stiffness (rigidity) and slowness of movement (bradykinesia) (NICE, 2006). A fourth sign – postural instability (loss of balance) – has also been identified but is usually associated with the later stages of the condition (Clarke, 2002).
A tremor can make everyday activities such as eating or drinking difficult and often becomes more noticeable if patients are anxious or excited. Initially, it is usually asymmetrical (present on one side of the body).
Although it is probably the most well known of Parkinson’s symptoms, not everyone with the condition will have a tremor.
Rigidity and bradykinesia mean people with Parkinson’s can experience problems with turning around, getting out of chairs, turning over in bed or making fine-finger movements, such as writing or fastening a button. Some find posture becomes stooped or that their faces are affected, making facial expressions more difficult.
Initiating movement (gait hesitation or freezing) can become more difficult. People with Parkinson’s can find it takes longer to do things and get tired more easily. Lack of coordination can also be a problem.
As well as difficulties with movement, patients can experience symptoms such as tiredness, pain, depression and constipation (NICE, 2006). These are often referred to as non-motor symptoms and can have a negative impact on daily living. It is often these symptoms that people find the most debilitating.
The combination of these motor and non-motor symptoms can, over time, impair the ability to carry out many activities of daily living, which is why it is necessary to identify the most suitable treatments to manage them. Treatment plans are unique to each individual.
Parkinson’s dementia is a significant issue for people with Parkinson’s disease. Around one in three people with Parkinson’s have some form of dementia and up to 80% of those with the condition may develop dementia at some point (NICE, 2006).
People with Parkinson’s dementia can have symptoms such as forgetfulness, slow thought processes and difficulty concentrating, as well as hallucinations and delusions. Like other symptoms, Parkinson’s dementia can also fluctuate, often becoming worse at night or in the evening.
Nurses caring for patients with dementia should try to make them feel as comfortable as possible and encourage them to keep engaging and interacting with other people. When speaking to patients, nurses should use familiar phrases, speak clearly, listen well and give them time to respond.
Box 1. Main types of drugs used in Parkinson’s
Levodopa One of the main drugs used to treat Parkinson’s, this can be used at all stages of the condition. It is a chemical building block that the body converts into dopamine, replacing dopamine that has been lost.
Dopamine agonists These are another main way to treat Parkinson’s symptoms. The drugs act like dopamine to stimulate nerve cells. They may prolong the onset of side-effects such as involuntary movements (dyskinesia).
Apomorphine This is also a dopamine-receptor agonist used to treat symptoms. It is administered by intermittent subcutaneous injection or by continuous subcutaneous infusion via a pump. It is the strongest known dopamine-receptor agonist, usually prescribed to those who have had Parkinson’s for a long time and have developed complicated motor fluctuations (changes in movement from good to poor) commonly known as “on/off” periods, which can be interspersed with dyskinesias.
Glutamate antagonist One glutamate antagonist – amantadine – is prescribed to treat Parkinson’s symptoms. It is not used very often and is likely to be given alongside other drug treatments for the condition. It can be used to treat tremor and rigidity, as well as involuntary movements.
Anticholinergics These are less commonly used now and block the action of acetylcholine – a chemical messenger that helps to send messages from the nerves to the muscles. Anticholinergics may be useful in the early stages of Parkinson’s, when symptoms are mild, and tend to improve tremor.
COMT inhibitors Catechol-o-methyltransferase inhibitors have to be used alongside levodopa. They reduce Parkinson’s symptoms by blocking an enzyme that breaks down levodopa, prolonging its effect.
MAO-B inhibitors Monoamine oxidase B inhibitors prevent the breakdown of dopamine in the brain by blocking an enzyme that breaks it down called monamine oxidase type B (MAO-B). They are used to make levodopa last longer or reduce the amount required.
The main treatment for Parkinson’s is medication. Most drug treatments aim to ease movement symptoms by: increasing the amount of dopamine in the brain; stimulating the parts of the brain where dopamine works; or blocking the action of other factors (enzymes) that break down dopamine (see Box 1 above).
Parkinson’s can affect different people in different ways, with symptoms and severity varying from person to person.
As a result, each individual will have a carefully balanced combination of medication to control and manage their symptoms. The timing of this medication is crucial, and it is important that all health professionals caring for people with the condition understand this if optimum symptom control is to be achieved and maintained.
If patients do not receive their medication on time, the consequences can be serious. Their ability to manage symptoms may be lost; for example, they may suddenly be unable to eat or drink, get out of bed or go to the toilet independently. The worst outcome would be complete inability to move and it can take a long time to regain symptom control.
Parkinson’s UK produces materials to help health and social care professionals to ensure patients are given medication on time (www.parkinsons.org.uk/getitontime).
The charity has also developed a guide to drug treatments for professionals working with people with Parkinson’s. This can be ordered from parkinsons.org.uk/professionals, and comes in a pocket version and as a poster. It explains clearly the drugs most commonly used to treat the condition.
Deep brain stimulation
Deep brain stimulation (DBS) is a form of surgery used to treat some symptoms of Parkinson’s. While it is not suitable for everyone with the condition, it can help to alleviate rigidity, bradykinesia and tremor. It can also enable drug dosages to be lowered, which can lead to a reduction in the involuntary movements (dyskinesias) caused by Parkinson’s drugs.
In DBS, signals from an electrical implant in the brain help reduce symptoms, such as tremor and stiffness. This type of brain surgery can be an effective treatment for up to 5% of people with Parkinson’s, in particular those whose symptoms are no longer adequately controlled by medication, and who have particular unwanted side-effects.
Impulsive and compulsive behaviour
Some patients who take dopamine agonists (or other types of Parkinson’s drugs) can experience problems controlling impulsive or compulsive behaviour (Weintraub et al, 2010).
Impulsive behaviour refers to the inability of patients to resist carrying out certain activities, some of these activities could be harmful to themselves or others. In many cases, this behaviour is out of character.
Compulsive behaviour refers to an overwhelming urge to act in a certain way to reduce the worry or tension this urge produces. This behaviour can be expressed in a number of ways, including addictive gambling, impulsive shopping, binge eating and hypersexuality.
Nurses who suspect a patient might be experiencing compulsive or impulsive behaviour should discuss the issue with the patient and the patient’s neurologist or GP as soon as possible.
Specialist Parkinson’s nurses
The first specialist Parkinson’s nurse was appointed in 1989. More than 20 years later, in part through the work of Parkinson’s UK, there are more than 300 in the UK.
These nurses help people with this complex condition to manage their numerous medications, offer advice and information about living with Parkinson’s and provide emotional support to patients and families throughout the patient journey, from diagnosis through the palliative treatment stages to end-of-life care. A recent report showed that twice as many patients rated their nurse as the most helpful in understanding their local Parkinson’s services, more so than their neurologist (Parkinson’s UK, 2011).
The Parkinson’s disease nurse specialist – the Parkinson’s nurse – is a specialist practitioner whose essential skills are clinical leadership, research awareness, development of nursing knowledge, acting as consultant educator, change agent and evaluator of care.
This kind of professional advice and support is invaluable to people with Parkinson’s. Professionals who can monitor the progress of the condition and give advice on drugs that have the potential to cause severe or adverse effects also provide many benefits to the NHS.
Parkinson’s nurses are an essential part of caring for people with this neurological condition because of its fluctuations and the drug adjustment needed to manage symptoms. The condition can make those affected more vulnerable as it progresses and, as people live for longer, we will see changes in clinical consequences for this patient group.
Supplementary prescribing is now used extensively for patients with Parkinson’s. This ensures a patient-centred and cost-effective service (Latter et al, 2005) and the ability to deliver complete episodes of care (Rodden, 2001), which reflects the extended role of the highly specialist nurse.
Advice for nursing care
People with Parkinson’s have specific needs and care requirements. Most important is that they receive their medication on time, every time. Nurses should also be aware of the “on/off” nature of the condition.
Some patients say they are “on” when their drugs are working and symptoms are mostly under control. If they go “off”, their symptoms are not under control and it becomes harder for them to move; some may stop moving altogether. Patients might change from “on” to “off” very quickly, like a switch.
The way in which Parkinson’s affects patients can vary from hour to hour and day to day, and it also varies widely between individual patients. The amount of help and support they need also varies. Nurses should therefore listen to patients and their families about how the condition affects them.
It is important to ensure that patients have access to a varied and balanced diet; nurses should take account of any swallowing or movement problems that could lead to malnutrition. It is also important to remember to give patients time to answer when talking to them. It may take them time to respond, but this does not mean they are not listening or do not understand.
The quality of the role of Parkinson’s nurses needs to be monitored and maintained. This specialist role, which requires a high level of autonomy, clinical judgement, discretion and decision-making, should not be diluted because the condition requires highly specialist nurse intervention.
To help people living with Parkinson’s to lead a healthy lifestyle and have a good quality of life, health professionals need to collaborate and work as part of a multidisciplinary team. Community pharmacist and specialist nurses working together in partnership can enhance the care delivered to patients with Parkinson’s, with medicines usage reviews forming an important part of this.
Parkinson’s Awareness Week, run by Parkinson’s UK, takes place from 16-22 April 2012 and this year’s focus is “find a cure”. While this is a huge focus for the charity, supporting those living with the condition is also of great importance and it is here that Parkinson’s nurses and other health professionals play a vital role.