As Parkinson's progresses and symptoms no longer respond well to treatment, daily living and quality of life become more difficult. You and your carer may need more help to manage your symptoms and physical requirements as well as your psychological and emotional needs.
The main principles of palliative care in Parkinson’s are:
- focusing on quality of life, including good symptom control
- discontinuing any unnecessary medication or inappropriate interventions such as blood tests and scans
- responding to your psychological, social and spiritual needs
- caring both for you and those close to you
- maintaining open and sensitive communication between you, your family, carer and healthcare team
- respecting the individual choices you and your family make, for example treatment options and deciding where to die.
Common problems in late stage Parkinson's
Parkinson’s is a very individual condition and everyone’s experiences will be different but some of the common difficulties encountered in the late stage are:
Reduced response to Parkinson's medication and re-emergence of symptoms - as Parkinson’s medications become less effective over time, other physical symptoms may re-emerge and pain may worsen. If this happens the emphasis will be on minimising symptoms using other, more general medications. Any change in medication should always be discussed with your doctor who will monitor effectiveness or side effects on an on-going basis
Bladder and bowel problems - as Parkinson’s medications become less effective, bladder control might be lost and bowel problems such as constipation may worsen. These can cause considerable distress if not carefully and sensitively managed. Your care team can prescribe various medications to help
Mobility and balance difficulties - mobility and balance may deteriorate, leading to falls and the risk of fractures. Depending on where you live, a physiotherapist and/or an occupational therapist will be able to help improve mobility and suggest strategies to minimise your risk of falling
Swallowing difficulties - a speech and language therapist will be able to help with any swallowing problem you experience. This can also help reduce the risk of aspiration pneumonia (infection caused by food or liquid entering the lungs)
Drooling - your doctor may be able to prescribe medication to help if persistent drooling is a problem. Speech and language therapists, physiotherapists and occupational therapists can also suggest ways to reduce drooling so do ask for a referral to these specialists
Communication problems - communication, including body language, facial expression, verbal responses and the written word, may become difficult. This can make it harder for you to stay involved in decisions about your treatment, but specialist help from a speech and language therapist can help to minimise any communication difficulties you have
Pressure sores and stiff joints - inadequate blood supply caused by prolonged pressure on a particular part of the body can cause ulceration of the skin or pressure sores. Lack of movement can also cause stiffening of a joint to the point that it can no longer be moved through its normal range. A physiotherapist can help with strategies to maintain movement and so prevent sores or stiffening
Mental and psychological problems - symptoms such as depression, anxiety and agitation may emerge or worsen. Emotional and psychological support from trained professionals is very important in order to manage these symptoms as well as possible
Confusion and dementia - the risk of confusion and dementia increases in the latter stages of Parkinson’s and additional support from specialist mental health professionals such as psychologists, psychiatrists or counsellors may be helpful.
Palliative care addresses all of these difficulties and encourages you to be involved in managing your situation and preparing for the future.
For more information on symptoms see Symptoms.
Articles from Parkinson's Life online magazine
- Ask the expert: Preparing for end of life