Project Background

Dementia is one of the fastest growing diseases in Australia, with prevalence rates expected to rise steadily over coming years. The primary health care workforce is at the forefront of dementia care, providing essential support across the disease continuum, from early diagnosis to ongoing management. However, it has been recognised that the disease complexity places significant demand on primary health care workers.

Dementia diagnosis can be a complicated process.  It is recognised that community ideas about dementia and ageing are often filled with misconception, lack of awareness, education and acceptance.  Societal stigma and denial limit the opportunity for people to receive an early diagnosis and the resulting benefits and merits associated with early diagnosis.

In the Grampians region, an initiative to address some of these challenges is the Dementia Pathways Tool (www.dementiapathways.com.au/). Launched in 2013, this online tool aims to enhance access to information about dementia for primary health care professionals, people with cognitive concerns and families.

The Dementia Pathways Tool provides a comprehensive yet intuitive web-based repository of dementia-related information, tools, service directories and resources which is publicly available. This enables community access to locally specific information about dementia that may be of relevance, including family and carer support, financial and legal issues, driving capabilities and powers of attorney.

The technical and online components of the Dementia Pathways Tool were designed by Centre for eResearch and Digital Innovation in close collaboration with project partners the Department of Health and Human Services (Grampians Region) and Grampians Medicare Local (now Western Victoria Primary Health Network), with the content informed by Associate Professor Mark Yates from the Cognitive Dementia and Memory Service (CDAMS), Grampians Health, and Deakin University.

In early 2015, in collaboration with South East Melbourne Medicare Local, the Dementia Pathways Tool was expanded and tailored for its region. To support this extension CeRDI redeveloped the Dementia Pathways Tool so it could comprise core dementia content as well as content contextualised to local regions.

Both Tools were guided in their development by the Dementia Pathways Working group comprising representatives from the Department of Health and Human Services (Grampians Region) and Grampians Medicare Local (now Western Victoria Primary Health Network). Advisory groups from the South Eastern Melbourne Medicare Local including the Aged Care Advisory Group contributed to the development of the South Eastern Melbourne Dementia Pathways Tool.

The pilot study evaluating the Dementia Pathways Tool demonstrated that the tool provided access to region-specific decision aids and referral management resources for primary care practitioners. Survey responses and usage data showed positive results and consistent usage over time.

In 2017 Associate Professor Mark Yates secured funding through the Lundbeck International Neuroscience Foundation to review, expand and re-evaluate the Dementia Pathways Tool. This involved reviewing and updating the Dementia Pathways Tool content to align with the Clinical Practice Guidelines for Dementia in Australia (2016) developed by the National Health and Medical Research Council (NHMRC) Cognitive Decline Partnership Centre. In addition, development and expansion of content in identified priority areas (driving, capacity assessment, pharmaceutical management and prevention).

In parallel, Caroline Gibson from Ballarat Community Health and University of Newcastle established practice nurse resources within the Dementia Pathways Tool to support a nurse-enhanced model of cognition care in primary practice, an extension of a project funded through the Australian Primary Health Care Nurses Association (APNA). These resources provide information and guidance around holistic health assessments, identifying support needs, care planning, future planning and support through transitions.

In 2024 the links in the Tool were updated, language modified to reflect expected norms and a section added on Mild Cognitive Impairment which will become an increasingly important diagnostic target with the probable advent of disease modifying treatments.

Through the Dementia Pathways Tool’s many iterations, the project has led to the development of a comprehensive online resource of information about dementia, designed for, and with substantial input from primary health care professionals.

All information provided is current at the time of development.

Updates to the Tool were completed in 2024.

Feedback on the Dementia pathway tool and the information and resources contained within the web-site is encouraged.

Acknowledgements

Organisations/Funders

Department of Health & Human Services (Grampians Region)

Western Victoria PHN (previously Grampians Medicare Local)

South Eastern Melbourne PHN (previously South Eastern Melbourne Medicare Local)

Lundbeck International Neuroscience Foundation

Australian Primary Health Care Nurses Association (APNA)

Ballarat Community Health

Grampians Health

Deakin University

Centre for eResearch and Digital Innovation, Federation University Australia for the design and development of the pathway, along with in-kind support.

Individuals

Carolyn Gargiulo, Department of Health & Human Services

Associate Professor Mark Yates, Grampians Health and Deakin University.

Professor Dimity Pond, University of Newcastle.

Caroline Gibson, Grampians Health and University of Newcastle

Alison Ollerenshaw, Federation University Australia

Meghan Taylor, Federation University Australia

Anna Wong Shee, Grampians Health and Deakin University

Chan Wen Yong, Grampians Health

Krishna Kalpurath, Grampians Health

Mitchell Carroll, Deakin University

Athena Demosthenous, Western Health