Advanced Parkinson's disease: treatment, swallowing and care planning

The NHS describes Parkinson's as progressive damage to parts of the brain over many years, with tremor, slow movement and stiff muscles as the main symptoms, alongside depression, anxiety, balance problems, sleep problems and memory problems. It says complex Parkinson's is the stage when treatment cannot consistently control symptoms or when disabling uncontrollable jerky movements (dyskinesia) have developed.

Parkinson's UK lists broad stages: early or diagnosis, maintenance (symptoms controlled, perhaps by medication), advanced or complex, and palliative. It says some people in the advanced stage notice changes in how the mind works, which may be a side effect of some Parkinson's drugs, including difficulties with memory, hallucinations, anxiety and depression. New confusion, hallucinations or sudden worsening in an older person should prompt a medical review, since infection and other illness can trigger these.

According to Parkinson's UK, medication changes as the condition progresses, and combinations can become more complicated. Many people find medicines work very well at first, but this can change and side effects can develop. In some people the specialist or Parkinson's nurse may reduce medicines if side effects outweigh benefits, which the charity notes can be hard to accept but may allow people to get the benefits of the remaining drugs rather than the side effects.

Options listed when tablets, capsules or patches no longer control symptoms include apomorphine (an injection or infusion of a dopamine agonist under the skin), levodopa/carbidopa gel delivered into the stomach through a tube, and deep brain stimulation surgery (DBS). Parkinson's UK says not to be surprised if the specialist raises these options when symptoms are complex or the drug regime has become complicated, and that it helps to think about them while the condition is still controlled by medication. If tablets are hard to swallow, the charity says the specialist or Parkinson's nurse may suggest a patch or liquid instead.

Parkinson's UK explains that swallowing problems (dysphagia) can come from Parkinson's itself or from some medicines, through stiffness and slowness in jaw, tongue and throat muscles. Signs include drooling, coughing food back up, food sticking in the chest or throat, a gurgly voice, coughing when eating or drinking, choking, problems swallowing medication and pain on swallowing. They can lead to weight loss, malnutrition, dehydration and chest infections. Because difficulties develop gradually, family, friends and carers should know what to watch for.

With silent aspiration, food, drink or saliva goes into the lungs without coughing. Aspiration pneumonia can cause chest pain, painful or difficult breathing, a cough with phlegm or blood, and fever, and is normally treated with antibiotics. The charity says to contact the healthcare team straight away, or NHS 111 if they are not available. Severe choking where the person cannot breathe, cough or speak is a medical emergency: call 999. Speech and language therapists assess swallowing, and a dietitian can help with weight loss; a GP or Parkinson's nurse can refer, or you can self-refer.

As symptoms become more complex, Parkinson's UK says more professionals may be involved, and the person and their carer are key members of the team. The specialist and Parkinson's nurse are the first port of call. Others can include a Macmillan nurse or hospice team for pain and symptom control (not only at the end of life), a continence adviser, a chiropodist, a social worker arranging care or housing, an NHS mental health team for hallucinations, delusions, paranoia or anxiety, and home or residential care workers. What is available varies between areas.

The NHS says that as Parkinson's progresses you will be invited to discuss the care you want near the end of life, which can be provided at home, in a hospice, residential home or hospital. Parkinson's UK stresses that palliative care is not just for the end of life, that there is no set length for the palliative phase, and that it covers physical problems such as pain, breathlessness, loss of appetite, immobility and constipation as well as personal, social, psychological and spiritual needs.

It suggests thinking ahead about what you would want if you became unwell or developed dementia, discussing wishes with family and writing them down. The NHS lists advance decisions, lasting power of attorney and plans for where care is received. Parkinson's UK also points to NHS continuing healthcare, putting affairs in order, and home care and care homes.

Parkinson's UK says carers of people with any long-term condition can feel isolated or frustrated, and suggests support from the healthcare team, local social services, NHS Continuing Healthcare if eligible, and the charity's own helpline. For carers who also have Parkinson's, it says to keep their own appointments and take time out. The NHS adds that those caring may be entitled to Carer's Allowance, and that Attendance Allowance may be available at State Pension age or older. Housing options such as home care and care homes are described as something couples may need to consider as Parkinson's progresses.