Optimising Dementia Diagnosis and Treatment

The Challenge

Behaviours and psychological symptoms of dementia (BPSD) are extremely common and negatively impact the person with dementia and those around them. 

Terminal agitation, behaviours that occur in the last days and months of life, can clinically appear similar to BPSD. Unfortunately, as a result, people experiencing terminal agitation are often misdiagnosed as having BPSD and referred to services such as Dementia Support Australia (DSA) instead of the required palliative care.

Project Overview 

In a world first, this project will utilise a data linkage between Dementia Support Australia (DSA) and the Australian Institute of Health and Welfare’s (AIHW) Death Index to better understand the clinical presentation and prevalence of terminal agitation. This initiative aims to use this information inform development of a clinical tool for aged and acute care settings to improve the identification and diagnosis of terminal agitation.

Measuring Impact

Hearts and Minds measures its impact across six core categories as developed by the Association of Australian Medical Research Institutes. Key highlights include:

Advancing Knowledge

• Collaborations: The Centre collaborates with nearly half of all universities and research institutes in Australia to leverage data and expertise.

Research Capacity Building

• ‍Supporting Young Talent: The project team consists of five researchers, including three early-career researchers who are supported and mentored within the team.

Economic Impacts

• Reduced Healthcare Costs: The project aims to maximise care for people living with dementia who may be in the last days or weeks of life by providing instruments to identify terminal agitation and referral pathways to palliative care services.

Social Impacts

• Inclusive Support: DSA supports over 20,000 people annually from diverse populations, including those from culturally and linguistically diverse (CALD) backgrounds, First Nations Australians, rural and remote communities, and various other groups. This comprehensive care approach ensures that all individuals, regardless of their background or circumstances, receive the support they need.

Informing Decisions

• Policy and Advocacy: The team participates in external decision-making groups, contributing to policy and advocacy efforts through academic, industry and Government collaborations and initiatives.
• Data Analytics: DSA is responsible for the world’s largest national BPSD database, informing diagnosis, care, and support for people with dementia across Australia in all care settings.

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The Dementia Centre continues to build the world’s largest national BPSD database. The project is on track to be completed by the end of 2024 and will create a significant asset for the aged and acute care system.

‍Funding support from Hearts and Minds Investments, as nominated by Core Fund Manager, Cooper Investors. This content was last updated in July 2024, for further information visit Dementia Centre.