Advanced Parkinson's disease: treatment changes, care team and palliative support

The NHS describes Parkinson's disease as a condition in which parts of the brain become progressively damaged over many years, with a loss of nerve cells in a part of the brain called the substantia nigra reducing the chemical dopamine that helps regulate movement. Most people have tremor, slow movement and stiff muscles, alongside other physical and psychological symptoms such as depression, anxiety, balance problems and memory problems.

The NHS is careful to say that many people respond well to treatment and only experience mild to moderate disability, whereas a minority may not respond as well and can, in time, become more severely disabled. "Advanced" or "complex" Parkinson's is not a single date on the calendar. The NHS defines complex Parkinson's as the stage when treatment is unable to consistently control symptoms, or when disabling dyskinesia has developed.

The NHS also makes a point worth keeping in mind: Parkinson's does not directly cause people to die, but the condition places strain on the body and can make some people more vulnerable to serious and life-threatening infections.

Parkinson's UK describes the practical shift. Non-motor symptoms, a term for anything other than the main movement symptoms of tremor, rigidity and slowness, such as sleeping problems, can need their own treatment and may mean the Parkinson's medicines are adjusted. In the later stages, when non-motor symptoms begin to dominate quality of life, it says it may be appropriate for some drugs to be withdrawn, which can be hard to accept after years of adding medicines.

The NHS notes that levodopa, the most widely used medicine, can become less long-lasting over the following years, so doses may need to increase from time to time, and long-term use is linked to dyskinesias and "on-off" effects in which a person rapidly switches between being able to move and being immobile. These fluctuations are the most common reason a specialist begins to talk about alternatives to tablets.

Parkinson's UK says your specialist or Parkinson's nurse may adjust medicines, treat non-motor symptoms and consider non-oral therapies. It explains that people often receive similar treatment for problems such as sleep as people without Parkinson's would, provided the medicines are compatible with Parkinson's medication.

When symptoms become difficult to control with tablets alone, the NHS lists apomorphine, a dopamine agonist given by injection under the skin or by continuous infusion using a small pump, and continuous pumped treatments such as co-careldopa and foslevodopa-foscarbidopa, delivered into the tummy through a tube for people with severe on-off fluctuations or involuntary movements. Deep brain stimulation is a type of surgery used in some cases.

Parkinson's UK adds that it is sensible to think about these alternatives while your condition is still controlled by medicines, because it makes it easier to achieve the best symptom control. If you have previously had surgery you may still need to take more medication alongside it.

As symptoms become more complex, Parkinson's UK says the number of professionals involved may grow. The specialist and Parkinson's nurse are the first port of call. Others may include a Macmillan nurse or hospice team, which it says are not just for the end of life and can help at earlier stages with pain and symptom control, a continence adviser, a chiropodist, a social worker, the local mental health team for hallucinations, delusions, paranoia or anxiety, and home carers or care home staff.

The NHS lists physiotherapy to ease stiffness and improve walking, occupational therapy to solve practical problems at home, and speech and language therapy for swallowing difficulties and speech. It also describes dietary advice, such as more fibre and fluid to ease constipation, or changes to avoid unintentional weight loss. A care plan should be agreed and reviewed regularly, and you can ask your local authority for a care and support needs assessment.

Parkinson's UK defines palliative care as helping you keep your quality of life by managing symptoms, relieving pain and managing other distressing aspects. It must address physical problems, including pain, breathlessness, losing your appetite, immobility and constipation, but also the personal, social, psychological and spiritual needs of you and your family.

The NHS says that as the disease progresses you will be invited to discuss the care you want with your healthcare team as you near the end of life, and that palliative care can be provided at home, in a hospice, a residential home or a hospital. Talking with family and the care team in advance about where you would like to be cared for and what care you do and do not want is described as sensible.

The NHS recommends that people with progressing symptoms try less strenuous activity such as walking or simple stretching and strengthening exercises, eat a balanced diet and have an annual flu vaccination. It also says to tell the DVLA and your insurer about the diagnosis, and that being diagnosed does not necessarily mean you must stop driving.

Money matters can become pressing. The NHS lists benefits that may be relevant, including Attendance Allowance for people at State Pension age or older, Personal Independence Payment for those 64 and under, and Carer's Allowance for people caring for someone with Parkinson's. Carers have needs too, and the NHS acknowledges that partners and carers will inevitably feel anxious or frustrated at times; being open with family and friends about what help would be useful is encouraged.

Contact the Parkinson's nurse or specialist team for new or worsening movement fluctuations, hallucinations, falls, swallowing problems or other changes. Because swallowing difficulty can lead to chest infections, new coughing or choking with meals or a fever should be reported promptly. Call 999 for severe breathing difficulty, a suspected stroke, a serious fall with injury or sudden collapse.