Despite many efforts, the gaps in services for Indigenous Australians living in remote communities continue. A recent study conducted in the Kimberley region of Western Australia by The University of Western Australia demonstrated a high prevalence of dementia in Aboriginal communities. This finding led to the development of this research project which was conducted in three stages. The first stage involved a literature review of service gaps and current care initiatives for remote Aboriginal community care for the frail aged and people with disabilities. The second stage involved a qualitative study to determine the unmet needs of Aboriginal people with dementia and their caregivers living in the Kimberley region. The third stage involved utilising the results from this study to develop and trial a community care model to meet the needs of the frail aged, and people of all ages with disabilities and mental illness living in remote Aboriginal communities.
The Unmet needs Study: A steering committee comprising past and present Aboriginal caregivers, remote community representatives, and service providers was formed to advise and guide the research project. Kimberley service providers (n=42), caregivers of Aboriginal people with dementia (n=16) and remote community-based HACC workers (n=15) were interviewed by Kimberley-based research staff to determine the scope of the services in the region and the unmet needs of people with dementia and their caregivers.
The Lungurra Ngoora Pilot Project: The model was developed based on the outcomes of the unmet need study. Focus groups were formed to maximise consultation, represent the needs of the community and to develop and endorse the project. The pilot involved provision of care to those who were traditionally in receipt of services by aged care, mental health and disability services. The pilot was funded by Home and Community Care (Department of Health WA), Western Australian Country Health-Mental Health Service and the Disability Services Commission. Utilising a mixed method approach of both quantitative and qualitative data, an evaluation of services was made at baseline, six months and twelve months in several key areas. Data were acquired based on tick sheet reports (weekly summaries of services provided in the community), from feedback forms from clients and carers, and testimonials from service providers and the community. These outcomes are supplemented by an independent evaluation report that is available below.
The study protocol was approved by Western Australian Aboriginal Health Information and Ethics Committee (WAAHIEC) and the University of Western Australia Ethics Committee for Human Research. Community council and individual approval was sought and gained.
The Unmet needs Study: The results from the interviews strongly indicated many areas of unmet needs in the Kimberley. The key unmet needs identified were genuine community consultation, service coordination and communication, community based services, culturally secure services, Aboriginal workforce with local guidance and support, and education and training.
Lungurra Ngoora Pilot Project: In the twelve month period the client base grew from 8 clients to 22 clients utilizing services. The number of services provided grew from 140 services at baseline to 2395 services at twelve months. A total of 18,541 services were received by clients from 13th July 2009 – 11th June 2010. Greater collaboration and coordination of services occurred as well as high client and community satisfaction with the range of services (measured through feedback forms). Strong support was gained from local businesses who donated goods throughout the project. Looma Council reported strong approval for the consultative and on the ground nature of the service, and for the employment and ongoing training of community members. External service providers have reported increases in efficiency through co-owning a community-based service and marked improvements in the health and well-being of their clients.
There have been dramatic improvements in service delivery in Looma community over the trial period. The model of care, based on extensive research of community needs, can provide more effective and equitable remote service delivery to the frail aged, people of all aged with disabilities and mental illness, and their caregivers living in remote Aboriginal communities. The Lungurra Ngoora Community Care Service has been embraced by the Looma Community. Due to the nature of the model the project was flexible enough to withstand the challenges often faced in remote communities. There is potential for expansion of the key components of this model to other areas given genuine collaboration and consultation with interested communities.
The following recommendations were developed through extensive consultation with stakeholders both prior to and during the trial, and are crucial to the future success and sustainability of the model. These recommendations address the unmet needs identified in the second part of the project, namely genuine community consultation, service coordination and communication, community based services, culturally secure services, Aboriginal workforce with local guidance and support, and education and training.
• Formal partnerships, cooperation and collaboration between service providers and community. The model ensures the formal collaboration of service providers with each other and the Aboriginal community at all levels. The steering committee co-funds and co-directs the project, assisted in the collaboration process by the independent facilitator. Organisations commit to and sign a service agreement which identifies the shared objectives that they co-developed and outlines their role. The values of mutual respect, ability to be flexible and innovative, and to work within a team are key attributes for the steering committee. The guidance of the steering committee and the local action group is invaluable for the success of the project.
• Genuine community consultation, guidance and decision making. The community must be involved in all aspects of decision making including project design, consultation, management and feedback. Decreasing reliance on transient positions (such as the community CEO) through formal community council engagement at the strategic management level prevents regular changes in the administration staff from halting the delivery of services. The regular survey of community clients and caregivers on ways to improve the service is recommended.
• An independent facilitator to ensure collaboration and assist with direction of common goals. If possible the role should be filled by a non-government organisation to assist in facilitating the variety of specialised service providers and industry to work together with the community and pool resources to provide one on-the-ground service, to mediate interests, to ensure a focus on community development and to engage local businesses. It is recommended that the facilitator holds the project funds and employs staff members to simplify administrative procedures.
• Flexibility of service providers, staff and the service. The service needs to be flexible and responsive to the needs of clients, caregivers, the community and the staff. It is recommended that a pool of community-based workers are employed and trained to provide a range of services.
• Culturally secure and community-based service. Employment of preferably Aboriginal staff members who are supported in the community and guidance from the community council capitalises on local knowledge and builds community capacity. It also enables the service to meet the specific needs of each community. It is recommended that the project coordinator works with the community council to identify and recommend potential workers from the community. This also enables positions to be filled quickly.
• Community based support, mentorship, training and development of staff. It is recommended that steering committee and local action group members are actively encouraged at each meeting to identify new training opportunities and resources available to the community members and project staff and assist in accessing these. The community-based project coordinator provides day to day mentorship and support to the staff. The independent facilitator manages and supports the project coordinator with support from the community council. As transport is a key issue for clients and caregivers, all project staff should be supported to gain their driver’s licence where possible.
• Ongoing advocacy for clients and families. The project coordinator provides one access point in the community for clients, caregivers, the council and service providers. This has assisted in the smooth delivery of services. Outstanding service delivery issues for clients and caregivers (such as installation of equipment, need for an interpreter or health care issues) can be efficiently followed-up by the project coordinator, or jointly coordinated at local action group meetings.
Smith K, Flicker L, Shadforth G, Carroll E, Ralph N, Atkinson D, Lindeman M, Schaper F, Lautenschlager NT, LoGiudice D.'Gotta be sit down and worked out together': views of Aboriginal caregivers and service providers on ways to improve dementia care for Aboriginal Australians.
Rural Remote Health; 2011;11(2):1650.
- Geraldine Shadforth, Project Officer
- Anna Dwyer, Project Officer
- Naomi Ralph
- Kate Smith
- Assoc Prof David Atkinson
- Dr Dina LoGiudice, Geriatrician, National Ageing Research Institute, Vic
- Prof Leon Flicker, Geriatrician, WA Centre for Health and Ageing, UWA
- Prof Osvaldo Almeida, Old Age Psychiatrist, WA Centre for Health and Ageing, UWA
- Prof Nicola Lautenschlager, Old Age Psychiatrist, WA Centre for Health and Ageing, UWA
- Jocelyn Jones, Telethon Institute of Child Health Research