Neurodegenerative Disorders Needs Analysis
Funding Body
Lotterywest Social Research Grant ($178,025)
Project Description
The purpose of this project is to provide home and community care providers, planners and policy makers with information that will assist them to better understand the current and future needs of individuals (and their families/carers) living with Multiple Sclerosis, Huntington’s, Parkinson’s And Motor Neurone Diseases, in the community.
Three questions are being addressed by this research:
- Who are the people with these conditions?
- What is the natural progression of their condition and how does this affect them and their carers/families?
- How does this translate into the need for services to support their quality of life and; ability to remain living in the community?
The project is employing mixed methods including:- a survey of individuals living with one of the diseases of interest and their carers; in-depth interviews with clients, carers, providers and other stakeholders; case studies; and, a data linkage exercise to try to quantify the home care services currently being provided to people with these diagnoses.
The project is a multi-agency collaboration between seven of Western Australia’s largest providers of home care to people with these conditions, ie Silver Chain, Perth Home Care, Mercy Care, Brightwater, Alzheimer’s WA, Neurological Council and the MS Society of WA. The other key stakeholders in the provision of support to individuals living with these conditions, ie the condition-specific support groups, disability services and neurosciences are all also involved with the project and are members of the project steering group. The project also has a State Advisory Panel whose membership includes those individuals involved in determining, or with the potential to influence, policy and planning in regard to services for these groups.
Project Update
This project is now complete. All data has been collected and analysed and six reports and an Executive Summary have been written:
The project came to a close with the handover of the Executive Summary by Silver Chain's Chief Executive Officer Chris McGowan to Ms Jo Wilkie of Lotterywest at an event hosted by Silver Chain at the Metro Hotel on Canning in South Perth on 25 September 2008.
Representatives and/or Board members of all agencies collaborating in the project were present. Also attending were many representatives, or the members themselves, of the State Advisory Panel for the project, as well as project participants.
In addition to the main project reports, a number of other presentations/papers have been prepared during the project, see below:
Giles, M. and Karol, E. 2008. Declining mobility and its impact on housing, transport and equipment needs: The lived experience of adults with neurodegenerative disorders in Western Australia. Paper presented at the International Federation of Ageing’s 9th Global Conference on Ageing. Montreal, Canada. 5 – 8 September.
Karol E, Giles M. 2008. Theory and practice: The response of people with neurodegenerative disorders to home design in Western Australia, in Gerontechnology Conference Issue of 6th Conference of the International Society for Gerontechnology. Pisa, ISG, Helsinki. Vol. 7, pp. 137.
Karol E & Giles M. 2008. Building Design and the Lived Experience of people with Neurodegenerative Disorders in Western Australia. Architectural Science Review. September 2008.
Characteristics and Home Support Needs of People with MND in Western Australia, 1996 - 2006 [PowerPoint]
Motor Neurone Disease Assoctaion National Conference
Presenter: Dr Margaret Giles
Characteristics and Home Support Needs of People with MS in Western Australia June 2007 [PowerPoint]
Multiple Sclerosis Society WA Forum
Presenter: Ms Boshra Yazahmeidi
For further information please contact
Dr Gill Lewin
Project Manager
Email glewin@silverchain.org.au