Caring for someone with Parkinson's at the end of life
Please be aware - this information is for healthcare professionals
Parkinsonism is an umbrella term used to describe symptoms or signs that are found in Parkinson’s but which can also be found in other conditions that cause slowness of movement, stiffness and tremor.
Most people with a form of parkinsonism have idiopathic Parkinson’s disease, or Parkinson’s. Idiopathic means the cause is unknown.
People showing symptoms of parkinsonism who are not diagnosed with idiopathic Parkinson’s may have another type of parkinsonism, such as multiple system atrophy (MSA), progressive supranuclear palsy (PSP) or corticobasal degeneration.
About one person in every 500 has idiopathic Parkinson’s. That’s about 127,000 people in the UK. Most people who get Parkinson’s are aged 50 or over, but younger people can get it too.
What are the symptoms of Parkinson’s?
People with Parkinson’s don’t have enough of the chemical dopamine because the nerve cells in the brain that make it have died. This loss of dopamine can cause problems with movement and mental processes.
The main motor symptoms of Parkinson’s are:
- slowness of movement.
Parkinson’s doesn’t just affect mobility. People living with the condition can experience a range of non-motor symptoms that can often have a greater impact on their lives than movement difficulties.
Non-motor symptoms include:
- sleep problems
- excessive sweating
These non-motor symptoms are present at all stages of the condition but they can dominate in the later stages of Parkinson’s.
How can Parkinson’s affect people at the palliative and end of life stage?
Parkinson’s progresses in stages: diagnosis, maintenance, complex (or ‘advanced’) and palliative.
Although the condition progresses differently and at a different speed for each person, the advanced stage can sometimes cover a long period of time.
Someone with advanced Parkinson’s may experience the following:
- Drug treatments stopping being as effective.
- A complicated drugs regimen.
- More ‘off’ periods, when the effects of medication are reduced and people experience movement (motor) fluctuations and involuntary movements (dyskinesia).
- Increased mobility problems and falls.
- Problems with swallowing.
- Mental health symptoms such as depression, anxiety, hallucinations and delusions and dementia.
- Reduced independence.
- Less control of their Parkinson’s symptoms, which become less predictable.
- Pain – management of pain is crucial at the advanced stage.
It’s important to note that some of the more advanced symptoms can lead to increased disability and poor health, which can make someone more vulnerable to infection.
People with Parkinson’s most often die because of an infection or another condition.
How can I support a person with Parkinson’s at the palliative and end of life stage?
In the advanced stages of Parkinson’s, your patient’s care needs may be more complex and require careful planning. The patient, their family and other health and social care professionals should be involved.
Palliative care should be holistic, considering the ‘whole person’ to support their and their family’s personal, social, psychological and spiritual needs. It should give your patient some control and choice over areas such as treatment options and where they will be cared for, as well as providing advice and support to everyone involved in their care.
It is important to take a person-centred approach to care. This means focusing on the needs of the person with Parkinson’s as an individual whose life is not defined by the condition.
People with Parkinson’s and their carers (if they have them) are experts in their own condition and you should talk to them about what they think their needs are. Anyone involved in caring for a person with Parkinson’s should focus on what that person can do, not what they can’t do.
Palliative care in Parkinson’s may be supported by a number of professionals, including a Parkinson’s nurse, local hospice or specialist palliative care team, physiotherapist, occupational therapist, speech and language therapist or dietitian.
It is important that you find out whether your client has a care plan in place. This will outline their preferences for how their condition should be managed as it progresses, and will also include information about their wishes for palliative care
If your client does not have a care plan in place, you should help them gather this information as soon as possible. You should do this in discussion with the person themselves, their carer, if they have one, and any family members.
Parkinson’s UK has brought together health and social care professionals to form the UK Parkinson’s Excellence Network. These professionals bring together their expertise and knowledge to transform care for people affected by Parkinson’s.
The Network offers resources to support service improvement and engage people affected by Parkinson’s, comprehensive information about education and training and collaboration opportunities. It also has the latest news, events and funding opportunities for professionals. Find out more at www.parkinsons.org.uk/professionals
Through the Excellence Network, Parkinson’s UK runs a range of online and facilitator-led learning programmes for health and social care professionals. Details of these, and courses run by independent training companies across the UK, can be found in the education and training directory.
This content has been provided by Parkinson's UK.
Points to remember
- Parkinson’s is a progressive neurological condition. The main symptoms are tremor, rigidity and slowness of movement, but the condition doesn’t just affect mobility.
- Parkinson’s affects people in different ways. Listen to the person with Parkinson’s and their family about how the condition affects them – they are the experts.
- Some people with Parkinson’s experience involuntary muscle movements, called dyskinesia, which can cause jerking, twitches or spasms and can affect any part of the body. This is a side effect of some Parkinson’s drugs, when they have been used for a long time. These random body movements can also make it hard for the person to balance and walk.
- Give the person time to answer when you talk to them. It may take them time to respond, but this doesn’t mean they are not listening or don’t understand.
- If you work in a hospital and there is a self-administration of medication policy, you should encourage your patient to be responsible for taking their own medication if they are physically and mentally well enough to do so.
- If your hospital doesn’t have a self-administration of medication policy, or your patient is too unwell to manage their own medication, make sure you give them their Parkinson’s medication on time, every time. Taking medication at exactly the right time is crucial for people with Parkinson’s and can make it easier for you to manage their care while in hospital.
- It is vital that a person’s Parkinson’s medication is not stopped abruptly at any time.
- Certain drugs should be avoided in patients with Parkinson’s, unless they are recommended by a specialist, as they can make symptoms worse. Make sure you check the medication before you give it to someone.
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