Services for people with Parkinson’s disease: Parkinson’s NSW

Eighty thousand people have been diagnosed with Parkinson’s disease (PD) in Australia. One in five of these are of working age and 10 per cent of these are under 40 years of age. The prevalence of PD is increasing by two to three per cent each year. PD is a multi-faceted and complex neurodegenerative disease which occurs when dopamine-producing cells in the subtantia nigra pars compacta start to die and therefore deplete the production of dopamine. People with PD experience a myriad of brain changes affecting their movement, sleep, mood and cognitive functions.

Parkinson’s NSW is a non-profit, community-based non-government organisation that has been operating since 1979. The organisation provides valuable support to those coming to terms with a diagnosis, as well as ongoing support for families and carers. There is an extensive network of support groups throughout NSW that connect and support people living with Parkinson’s disease. In addition, Parkinson’s NSW funds research in a variety of disciplines and interests such as sleep and Parkinsonism, falls prevention, gene expression in Parkinson’s disease and stem cell treatments. The organisation has a small group of ‘Infoline’ workers, who answer questions about Parkinson’s disease and refer people to the three specialist counsellors on the staff.

The psychologist’s work

There are several significant psychological aspects relating to the actual disease process or the available treatments of PD that may require psychological assistance. Thirty to forty per cent of people with PD are depressed, with symptoms such as anhedonia, concentration problems, low mood and fatigue being more noticeable than sadness and guilt. The incidence of anxiety in PD is about 25 per cent and this is usually generalised anxiety, although panic attacks occur in some people when medication levels are low. Apathy often accompanies PD or the opposite, compulsive behaviours, can be brought about by the dopamine replacement or agonist drugs. Loss of muscle atonia at night can cause REM sleep behaviour disorder where people physically act out their dreams. Dementia is common in the late stages of PD and in some people is diagnosed simultaneously with the motor symptoms.

The psychologist working as a specialist counsellor within Parkinson’s NSW provides face-to-face and telephone counselling and support to people with PD and their carers. Free and unlimited counselling can be accessed by anyone at any stage of the process. Supportive counselling and education is provided before and after diagnosis, and an early stage group education program is conducted through the year. Cognitive behaviour therapy and acceptance and commitment therapy are very useful at any stage in the disease process to manage anxiety and depression for people with PD, as well as to support stressed carers and families.

The specialist counsellors attend a weekly multi-disciplinary Parkinson’s clinic situated in the War Memorial Hospital in Waverley, Westmead and Concord Hospitals. At the Concord clinic, each new patient and a companion or carer comes to the clinic for a five-hour appointment where they are seen by a neurologist, physiotherapist, speech pathologist, dietitian, occupational therapist and a specialist counsellor. The role is to assess and support patients and their families and contribute psychological information to the team in order to achieve the best outcome for people with PD. Each couple or family emerges from the busy day with new insights and the knowledge that, in conjunction with Parkinson’s NSW, they join with a team of people to assist them in the future.

The author can be contacted at [email protected] or [email protected]