Caring for someone with Parkinson's towards the end of life
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People with Parkinson's experience symptoms which affect their movement. They may also experience symptoms not related to movement, such as tiredness, depression and pain. On this page, we talk about knowing when a person with Parkinson's is near the end of their life, and how to support them.
On this page:
Key points
- Parkinson’s causes problems in the brain and gets worse over time. The main symptoms are tremor, stiff muscles (rigidity) and slowness of movement.
- Parkinson's also causes symptoms not related to movement, such as sleep problems, memory problems and bladder and bowel problems.
- Parkinson's affects everyone in different ways. Listen to the person with Parkinson's, and those close to them, to find out how the condition affects them.
- Always give medicines for Parkinson's on time. This will prevent the person's mobility becoming severely affected.
- Parkinson's medication should not be stopped suddenly. Sudden reduction of dopamine agonist medicines (medicines that mimic dopamine) can lead to severe withdrawal symptoms.
- Encourage the person with Parkinson's to make an advance care plan. Include information about what should happen if they cannot take tablets anymore. Read more about helping someone to make an advance care plan.
What is Parkinson's?
Parkinson's causes problems in the brain and gets worse over time. This is known as a progressive neurodegenerative condition.
Parkinson's is not considered a terminal illness. But it can decrease a person's life expectancy. Parkinson's can make people more likely to have infections, falls and other complications.
Parkinson's happens when the brain loses nerve cells that produce dopamine. Dopamine helps to control how your body moves.
We do not know what causes Parkinson's. It may be a mix of genetics and environmental factors.
Parkinson's causes parkinsonism. Parkinsonism is a group of symptoms that cause slowness of movement, stiffness, tremor or balance problems. Other things can cause parkinsonism, including:
- multiple system atrophy (MSA)
- progressive supranuclear palsy (PSP)
- cerebrovascular disease
- Lewy bodies dementia
- anti-emetic medicines (medicines to treat sickness), such as metoclopramide
- anti-psychotic medicines (medicines to treat psychosis), such as haloperidol.
Parkinson's usually affects older people, but younger people can get it too. 1 to 2 out of 100 people aged over 65 (1-2%) have Parkinson's.
What are the symptoms of Parkinson's?
The main symptoms of Parkinson's which affect movement are:
- tremor
- stiff muscles (rigidity)
- slowness of movement
- problems with balance.
These are known as motor symptoms.
People with Parkinson's can also experience non-motor symptoms – these do not affect movement.
Non-motor symptoms include:
- depression and anxiety
- sleep problems and tiredness
- low blood pressure
- restless legs
- memory problems and dementia
- sweating lots
- constipation
- needing to pee suddenly and often
- eating, swallowing and saliva problems
- speech and communication difficulties
- eye problems
- feet problems
- dental problems
- losing sense of smell
- pain.
These symptoms can happen at any time, but they can become worse in the later stages of Parkinson's.
Managing Parkinson's
There is no cure for Parkinson's. But there are medications and therapies that can help to manage the symptoms.
Medicines for Parkinson's
Medicines that increase the level of dopamine in the brain are the main treatment used to manage the symptoms of Parkinson's. Medicines are tailored to each individual’s needs.
Symptoms will get worse when someone's Parkinson's medicines are wearing off. They'll improve again after Parkinson's medicines are taken.
Taking Parkinson's medicines on time
It is important that people with Parkinson's receive their medicines on time. If people with Parkinson's do not get their medication at the right time, it can lead to their motor symptoms becoming uncontrolled. It can take some time to get their symptoms under control again.
People with Parkinson's should not have their medication stopped suddenly. Abrupt or sudden reduction of dopamine agonist medicines (medicines that mimic dopamine) can lead to severe withdrawal symptoms.
If you work in a hospital or care home, be aware that medicine timings will vary from person to person. They might also be different to ward medicine rounds.
Read information about giving medicines on time on the Parkinson's UK website.
Surgery for Parkinson's
Some people with Parkinson's can have surgery, depending on their symptoms. The main type of surgery to treat Parkinson's is Deep Brain Stimulation (DBS). It can help to manage symptoms like tremor, stiffness, and involuntary movements of the face, arms, legs and torso (known as dyskinesia).
DBS involves inserting wires into parts of the brain that control movement. This allows electric signals to be transmitted via a device implanted under the skin (similar to a cardiac pacemaker).
Read more information about DBS on the Parkinson's UK website.
Treatments can help to manage symptoms, but may become less effective in the later stages of the condition.
Advance care planning
People with Parkinson's should be given the chance to make an advance care plan as early as they feel comfortable with. This can help them to:
- say how they'd like to be cared for in the later stages of their disease
- make plans for the future.
Find out more about advance care planning.
Dementia in people with Parkinson's
There are two types of dementia which tend to affect people living with Parkinson's. These are Parkinson's dementia and dementia with Lewy bodies. Both types of dementia share similar symptoms. A neurologist will determine which type of dementia a person has mainly by looking at when dementia-like symptoms first started.
You may hear both types of dementia referred to as Parkinson's dementia or dementia with Lewy bodies. Dementia with Lewy bodies sometimes is used as an umbrella term for both types of dementia.
Dementia with Lewy bodies is one of the most common types of dementia, affecting over 100,000 people in the UK. Symptoms of dementia with Lewy bodies include:
- frequently changing attention and confusion
- sleep problems
- mood changes
- halluncinations and delusions
- changes in visual recognition
- memory problems
- other Parkinson's-like symptoms.
Knowing when someone with Parkinson's is near the end of life
Parkinson's progresses differently for each person. Some people with advanced Parkinson's live for many years.
It is difficult to predict how quickly Parkinson's symptoms will get worse. For most people, it takes years for the condition to progress to a point where it causes major problems. For others, Parkinson's progresses more quickly.
The following signs might suggest that someone with Parkinson's is in the final 6 to 12 months of life. It is important to remember that having some, or all these signs does not necessarily mean a person is near the end of life.
Mobility problems
The person with Parkinson's:
- has more mobility problems and falls
- has very slow and rigid movements
- needs to be in bed or a chair for more than half a day.
Communication problems
The person with Parkinson's:
- has less ability to communicate or reduced cognition
- has a quiet voice (hypophonia) - this can be frustrating for the person and make comunication more difficult.
Mental health problems
The person with Parkinson's:
- has mental health problems like depression and anxiety
- has hallunications or delusions.
Cognitive problems
The person with Parkinson's:
- has mood and behaviour changes frequently
- has psychotic disturbances
- has dementia.
Worsening condition
The person with Parkinson's:
- needs to take lots of medicines to manage their symptoms
- gets worse day by day, or more quickly
- has symptoms that are becoming less predictable
- is losing weight
- has swallowing difficulties, which may lead to breathing problems and infection
- has had repeated unplanned hospital admissions
- is in pain.
Supporting someone with Parkinson's towards the end of life
In the advanced stages of Parkinson's, people may have more complex care needs. Palliative care will focus mainly on managing the person's symptoms and keeping them comfortable.
Here are some things you can do to support someone with Parkinson's towards the end of life.
- Involve the person, and those important to them, in conversations about their care.
- Work together with the person's specialist Parkinson's team. They will manage the person's medication and stop any medication which is not suitable.
- Make sure the person has the chance to make an advance care plan, if they want to.
- Share the guide from Parkinson's UK about preparing for the end of life.
Managing symptoms
You should support the person by helping to manage their symptoms, which could include:
- breathlessness
- constipation
- depression or emotional distress
- sleep problems
- nausea and vomiting
- noisy chest secretions
- pain
- pressure ulcers.
Pain
Pain occurs in up to 50 out of 100 people (50%) with Parkinson's. It can be caused by both motor and non-motor symptoms. Pain can become more frequent and severe in a person with advanced Parkinson's.
Identifying the cause of the pain can help achieve successful pain relief. If the pain gets worse when Parkinson's medications are wearing off, aim to maintain the medications. If the pain is not related to the Parkinson's medications, treat the pain with general pain management medicines.
Some people with Parkinson's may have a syringe driver (sometimes called a syringe pump) put in place to help give them continuous pain relief. This can help improve their quality of life and keep them comfortable.
Read more about syringe drivers.
Read more about managing pain towards the end of life.
Communication
Communication can be difficult for someone with Parkinson's towards the end of life. Speech and handwriting can be affected. They might take longer to find the right words or understand what you mean. It is important to allow time for the person to communicate their wishes. Where possible, have important care conversations early on in their care.
Read more information about speech and communication problems on the Parkinson's UK website.
Here are some things that might help you to communicate well with someone with Parkinson's:
- Ask the person you are caring for how hey would prefer to communicate. Be aware this might change frequently.
- Make sure you and the person with Parkinson's can see and hear each other. Face them when speaking to them.
- Check if the person uses hearing aids, and if they are working well – for example checking the settings and batteries.
- Check if the person uses glasses and if they are working well. Consider if the person requires any other equipment, like magnifiers.
- Consider the use of an interpreter for someone who speaks a different language to you.
- Consider using non-verbal communication cards.
- Be patient – they may need extra time to respond.
- Reduce background noise, like the radio or TV.
- Ask for clarification if you have not understood them.
- Avoid interrupting or finishing their sentences.
- Try not to speak for them unless they have asked you to.
Read more information on communicating well and supporting with different communication needs.
If you are still unsure about how best to communicate, speak to a speech and language therapist, who should be able to guide you.
Medicines at the end of life
There are some medicines that are commonly used to treat symptoms in palliative care that should not be used for someone with Parkinson's. This is because they affect dopamine levels and can make Parkinson's symptoms worse. These include:
- some anti-emetic medicines (medicines to treat sickness), like metoclopramide and prochlorperazine
- some anti-psychotic medicines (medicines to treat psychosis and manage delirium), like haloperidol.
Be aware that:
- dopamine blocking medicines should also be avoided
- people with Parkinson's will continue their usual medicines when they are at the end of life, unless a specialist advises stopping them
- some medicines may no longer be suitable if they are not controlling symptoms, or they are causing too many side effects
- if someone has difficulty swallowing pills, they might take their medicines by a different route, such as through a feeding tube.
Supporting those important to the person with Parkinson's
Caring for someone with Parkinson's can be demanding. People important to the person with Parkinson's may need support. Here are some ways you can help:
- Help them find out which local support services are available.
- Consider if they could have a carer's assessment or can access additional support.
- Provide information about advanced Parkinson's to those important to the person at an early stage. This can help them to have conversations about how the person would like to be cared for in the future.
- Tell them about the Marie Curie Support Line.
- Tell them about the Marie Curie Bereavement Service.
Who to ask for help
If you're worried about the person's medication or symptoms, speak to:
- your line manager
- the person's specialist Parkinson's nurse
- the person's neurologist
- the person's GP.
Useful resources
NICE Clinical Knowledge Summary: Parkinson's
NICE Clinical Knowledge Summary: End-stage Parkinson's disease
Parkinson's UK – information about advanced Parkinson's for people with the condition and those around them.
The UK Parkinson's Excellence Network – information about education, training and collaboration opportunities for professionals.
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Disclaimer
This information is not intended to replace any training, national or local guidelines, or advice from other health or social care professionals.
The Palliative Care Knowledge Zone is not intended for use by people living with a terminal illness or their family and friends, who should access our information for the public.
