The term 'advanced Parkinson's' usually refers to a time when your symptoms are more complex and have more of an effect on your day-to-day life.
It may be useful to plan ahead and understand what to expect with advanced Parkinson's.
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 a time when Parkinson's drugs are less effective at managing your symptoms, or their side effects are outweighing their benefits.
You may have a more complex drugs regime.
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, confusion, anxiety and depression.
Dementia doesn't affect everyone with Parkinson's, but it is more common in people with the condition than those without.
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.
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.
Advanced Parkinson's booklet
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 local advisers
Our helpline and Parkinson's local advisers are here to answer any questions you have about any aspect of advanced Parkinson's.
Call us on 0808 800 0303.