Advanced Parkinson's disease: symptoms, treatment options and planning ahead

Parkinson's disease is a condition in which parts of the brain become progressively damaged over many years. The NHS explains that it is caused by a loss of nerve cells in a part of the brain called the substantia nigra, which leads to a drop in the chemical dopamine. Dopamine helps regulate movement, which is why the main symptoms are tremor, slow movement and stiff, inflexible muscles.

The word advanced is used loosely. Parkinson's UK describes it as a time when symptoms are more complex and may be having more of an effect on daily life, for example when someone is no longer able to wash and dress without help from another person. It may also be a time when Parkinson's drugs are less effective at managing symptoms, or when their side effects start to outweigh the benefits. Doctors sometimes call this the complex phase.

Parkinson's UK also describes common stages that health professionals refer to: an early or diagnosis stage, a maintenance stage when symptoms are controlled, an advanced or complex stage, and a palliative stage that focuses on relief from symptoms, stress and pain. These are a way of talking about care needs rather than strict boundaries, and the charity stresses that everyone with Parkinson's is different and symptoms progress at different rates, regardless of age or how long the condition has been present.

The NHS lists the main movement symptoms as tremor, slowness of movement (bradykinesia) and muscle stiffness (rigidity). It also describes a wide range of other symptoms, and says it is unlikely that one person would have all or most of them. Several tend to matter more as the condition moves into the complex phase.

• Balance problems, which the NHS says can make a fall and injury more likely.

• Swallowing difficulties (dysphagia), which the NHS says can lead to malnutrition and dehydration, and excessive drooling.

• Dizziness, blurred vision or fainting on standing, caused by a sudden drop in blood pressure.

• Problems with peeing, including needing to go often at night or unintentional leaking, and constipation.

• Problems sleeping, which can result in excessive sleepiness during the day.

• Depression and anxiety, and mild cognitive impairment with slight memory and planning problems.

• Dementia in some people, which the NHS describes as including more severe memory problems, personality changes, seeing things that are not there (visual hallucinations) and believing things that are not true (delusions).

The NHS says most people with Parkinson's disease eventually need levodopa. At first it can give a dramatic improvement, but its effects can become less long-lasting over the following years as more nerve cells are lost, so the dose may need to be increased from time to time. Long-term use is also linked to uncontrollable, jerky muscle movements (dyskinesias) and to on-off effects, where a person rapidly switches between being able to move (on) and being immobile (off).

Other medicines described by the NHS include dopamine agonists, MAO-B inhibitors, and COMT inhibitors, which are prescribed for people in later stages and work by preventing levodopa being broken down by an enzyme. Dopamine agonists can cause hallucinations and confusion and, in some people, compulsive behaviours such as gambling or shopping. The NHS points out that the person may not recognise this themselves, so carers and relatives are encouraged to mention any unusual behaviour to a professional early.

Parkinson's UK adds that people often end up taking a more complicated combination of medicines as the condition progresses. In some people with advanced Parkinson's, specialists may consider reducing medicines when side effects outweigh the benefits, particularly when non-motor symptoms begin to dominate quality of life. Parkinson's UK is firm that you should never stop or reduce Parkinson's medication without advice from your specialist or Parkinson's nurse.

When symptoms become difficult to control with tablets alone, the NHS says a number of other treatments can be considered. Parkinson's UK suggests it is worth starting to think about these options early, while the condition is still controlled by tablets, because it makes it easier to achieve the best symptom control. The main options are summarised below.

Parkinson's UK says that as symptoms become more complex, the number of people involved in your care may increase. The specialist and Parkinson's nurse are the first port of call for Parkinson's-related questions, and services vary between areas. Other professionals it lists include a continence adviser, a chiropodist, a social worker from the local authority, a mental health team for symptoms such as hallucinations, delusions, paranoia or anxiety, and care workers who help with day-to-day tasks.

Palliative care sometimes causes alarm, so it helps to know what is meant. Parkinson's UK explains that palliative care is about keeping quality of life through managing symptoms, relieving pain and addressing other distressing aspects of advanced Parkinson's, and that it is not just for the end of life. The NHS describes palliative care for Parkinson's as aiming to relieve pain and other distressing symptoms while giving psychological, social and spiritual support to you and your family, and says it can be provided at home, in a hospice, a residential home or hospital.

Carers matter too. The NHS notes that spouses, partners or carers will inevitably feel anxious or frustrated at times, and suggests being open about how you feel. Local authority care and support needs assessments are available, and the NHS lists benefits that may apply, such as Personal Independence Payment, Attendance Allowance and Carer's Allowance. Parkinson's UK also mentions NHS continuing healthcare as a topic to read about.

Parkinson's UK suggests that you may wish to read about advanced Parkinson's before it arrives, so you can be prepared and deal with difficult decisions as they come up. It encourages discussing your wishes with family and writing them down, including what you would like to happen if you become unwell or develop symptoms of dementia. The NHS likewise says that as the condition progresses you will be invited to discuss the care you want as you near the end of life, and that you may want to talk to family and your care team in advance about where you would like to be treated.

Staying active still helps. The NHS says regular exercise is particularly important for relieving muscle stiffness, improving mood and relieving stress, and that if symptoms are complex or progressing you might try less strenuous activity such as walking or simple stretching and strengthening exercises. A balanced diet is recommended, and a dietitian may be involved if swallowing or weight loss are issues.

If you drive, the NHS says you must inform the DVLA and your insurer after a Parkinson's diagnosis, although you will not necessarily have to stop. Complementary therapies are popular, but the NHS says there is no clinical evidence that they control Parkinson's symptoms, and herbal remedies such as St John's wort can interact unpredictably with some Parkinson's medicines, so check with your care team first.

Contact the specialist team or Parkinson's nurse when symptoms change, medicines seem to wear off sooner, side effects appear, or new confusion, hallucinations or compulsive behaviours develop. Parkinson's UK stresses that changes to medicines should come from the specialist team rather than from stopping or adjusting tablets alone.

As with any other person, a serious fall with injury, choking that does not clear, a sudden collapse or a sudden change in alertness is an emergency and is a reason to call 999 or go to A&E. For concerns that are not an emergency, a GP or NHS 111 can advise on the right next step.

On the NHS, Parkinson's care is usually led by a neurologist or a doctor with a specialist interest in Parkinson's, supported by a Parkinson's nurse and therapists, with the GP coordinating wider needs and the local authority providing social care assessments. Deep brain stimulation and tube-delivered medicines are provided through specialist centres, and the NHS notes that efforts are underway to improve the availability of supportive therapies.

Some people also see a private neurologist or buy therapy sessions privately, often to shorten waiting times or to obtain a second opinion. Advanced treatments such as pumps or DBS involve the same specialist teams and assessments in either route, and care often moves between the two. Whichever route you use, it helps to be clear about which team is responsible for adjusting medicines and who to contact if symptoms change.