As the disease advances and symptoms no longer respond well to treatment, daily living and quality of life can become progressively difficult for all involved. More and more help may be needed to manage symptoms and physical needs, and also to address the psychological and emotional aspects of living with a chronic condition, both for the person with Parkinson’s and their carer.
Parkinson’s is a very individual condition and everyone’s experiences will be different. It is hard to predict how each person will be affected but some of the main difficulties that may be encountered in the advanced stages are:
reduced response to anti-Parkinsonian medication and re-emergence of symptoms - Parkinson’s medications become less effective over time, other physical symptoms could re-emerge and pain may worsen. If this happens the emphasis will then be on minimising symptoms using other, more general medications. Any change in medication should always be discussed with the doctor and effectiveness or side effects monitored on an on-going basis
bladder and bowel difficulties - as Parkinson’s medications become less effective, bladder control might be lost and bowel difficulties such as constipation may worsen. These can cause considerable distress if not carefully and sensitively managed, but various medications are available to help and should be discussed with the medical team
mobility and balance difficulties - mobility and balance may worsen, leading to falls and risk of fractures. Depending on the country in which the person with Parkinson’s lives, a physiotherapist and/or an occupational therapist will be able to help improve mobility and suggest strategies to minimise the risk of falls
swallowing difficulties - speech and language therapy will be able to help with any swallowing difficulties. It can also help reduce the risk of aspiration pneumonia which may occur as a result of such difficulties
drooling - persistent and embarrassing drooling of saliva is common. A doctor may be able to prescribe medication to help. Speech and language therapists, physiotherapists and occupational therapists can also be able to suggest ways to reduce drooling so ask for 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 the person with Parkinson’s to stay involved in decisions about their own treatment, but specialist help from a speech and language therapist can help overcome or minimise communication difficulties
pressure sores and contracture - 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 contracture or stiffening of a joint to the point that it can no longer be moved through its normal range. Both of these can become very troublesome and 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 appear or worsen; emotional and psychological support is very important
confusion and dementia - the risk of confusion and dementia increases in the latter stages of Parkinson’s and often requires the additional support of specialist mental health professionals such as psychologists, psychiatrists or counsellors.
For more information on symptoms see Rewrite Tomorrow - symptoms.
Detail on palliative care treatments can be found in information sheet 2: Palliative Care Treatments.
Palliative care addresses all of these difficulties and encourages each individual involved to deal with their own situation and to prepare for the future.
The main principles of palliative care in Parkinson’s are:
- focusing on quality of life, including good symptom control and responding to psychological, social and spiritual needs
- taking an holistic approach, considering past life experiences and also the current situation
- care of both of the person with Parkinson’s and those close to them
- respect for autonomy and choice (for example when deciding where to die and treatment options in the final stages of life)
- emphasis on open and sensitive communication, which extends to the individual, carers and healthcare professionals .
Such support can be of enormous benefit for all, particularly in coming to terms with a continuing deterioration in health, coping with the complex aspects of the condition and accepting that the final stage of life has been reached.
