What is advanced Parkinson's?
‘Advanced stage’ means a time when Parkinson’s symptoms are more complex and may be having more of an effect on your daily life. You may find that you're no longer able to do tasks such as washing and dressing without help from someone else, perhaps a carer.
It may be useful to plan ahead and understand what to expect with advanced Parkinson's.
It may be a time when Parkinson's drugs are less effective at managing your symptoms, or their side effects are outweighing their benefits.
Some people also find they experience changes in how their mind works. This may be a side effect of some Parkinson's drugs and can include difficulties with memory, hallucinations, anxiety and depression.
What are the stages of Parkinson's?
Healthcare professionals often refer to different 'stages' of Parkinson's. These include:
- Early or diagnosis stage. The time when someone is first experiencing symptoms, being diagnosed and then coming to terms with this.
- Maintenance stage. When symptoms are controlled, perhaps by medication.
- Advanced stage. Often called the 'complex phase'.
- Palliative stage. Providing relief from the symptoms, stress and pain of the condition.
Everyone with Parkinson's is different and symptoms will progress at a different rate. It's nothing to do with your age or how long you've had Parkinson's.
When should I think about advanced stages?
You, or the person you care for, may not be experiencing advanced symptoms at the moment.
But you may wish to read about advanced Parkinson's now, so you can be prepared as things arise, and deal with any difficult decisions that need to be made.
You'll have the chance to think about what you may like to happen if you become unwell, or if you experience symptoms of dementia.
Discussing your wishes with your family, and writing them down, will help them if they need to make decisions about your care.
For more about the practical and emotional issues relating to Parkinson's and the later stages of life, see our information on preparing for end of life.
Fiona and Martin: our journey together with Parkinson's
"Our message to others starting the journey would be to see it as just that. While our lives didn’t always take the paths we anticipated, we’ve met people we wouldn’t otherwise have met, learnt things we wouldn’t have otherwise have known and we’ve still had fulfilling lives."
Martin has been living with Parkinson’s for 26 years and now has advanced symptoms. After retiring during lockdown, Fiona, Martin's wife and now full-time carer, reflects on how she and Martin have adjusted to a new way of life, and its impact on Martin’s condition.
Helpline and Parkinson's advisers
Our helpline and Parkinson's advisers are here to answer any questions you have about any aspect of advanced Parkinson's.
Call us on 0808 800 0303.
Living with Parkinson's, or caring for someone who does, can feel isolating. But you're not alone.
We're working with Re-engage to offer people with Parkinson's, and the people who care for them, a free telephone befriending service.
Want this information as a booklet?
Download our booklet for people who are looking for in-depth information about what to expect with advanced Parkinson's and how to plan ahead.