Palliative care and support for people with neurodegenerative conditions and their carers

Abstract

Aim: to identify and compare the needs for supportive care/palliative care services of people in Australia with Motor Neurone Disease (MND), Multiple Sclerosis (MS), Huntington's Disease (HD) and Parkinson's Disease (PD) and the needs of their carers.

Design: national, descriptive survey of service use and support needs for 503 patients and 373 carers. Patients and carers were recruited from the databases of the disease associations in three Australian states. Patients were excluded if recently diagnosed or too sick or disabled to complete the survey. This was a specification of the ethics committee overseeing this project.

Findings: the MND and HD groups had the greatest needs for support and appeared most receptive to a palliative approach. The MS group was least likely to have a carer and more likely to live alone. HD and PD groups had the highest rates of anxiety and HD groups had the highest rate of depression.

Conclusions: patients and carers who received more tailored services and more palliative care services were the most satisfied. Therefore, results highlight the need for tailored and flexible models of care for these groups with unique care requirements.