National Younger Onset Dementia Key Worker Program

Evaluation of the National Younger Onset Dementia Key Worker Program

Alzheimer’s Australia
Duration: October 2013 – September 2016

Download the final report

Westera A and Fildes D (2016) Younger Onset Key Dementia Worker Program National Evaluation: Final Report. Centre for Health Service Development, Australian Health Services Research Institute, University of Wollongong. Key Worker Program National Evaluation - Cover 


The Alzheimer’s Australia Younger Onset Dementia Key Worker Program was established in 2013 in recognition that people with younger onset dementia ‘fell through the gaps’ between disability and aged care services. Forty key workers were employed nationally to support people with younger onset dementia, their carers and family members and to link them to relevant health, aged care, disability and general community organisations. Importantly, the role also included building capacity in those other services to better meet the needs of people living with younger onset dementia. The Centre for Health Service Development evaluated the Key Worker Program between late 2013 and 2016. In keeping with the philosophy underpinning the Key Worker Program, the evaluation directly involved people with younger onset dementia in its design and consultations.

What we did

CHSD was contracted to undertake the national evaluation of the Key Worker Program. A significant focus of the evaluation was placed on national stakeholder consultations which involved over 120 people from all states and territories. Interviews were conducted with people with younger onset dementia and carers / family members either face to face, one to one or in focus groups, or over the telephone. Key Worker Program team members, leaders and program management were also interviewed, as were stakeholder representatives such as service providers and government representatives. In addition, the evaluation team supported the implementation of client assessment tools used within the Program.

In the three years of the evaluation, the Key Worker Program supported nearly 3,500 clients; this included over 1,500 people living with younger onset dementia, and nearly 2,000 carers and family members.

The strengths of the Key Worker Program were the expertise of staff and their enterprise in building capacity within communities to enable people with younger onset dementia to continue to have meaningful lives. The philosophy underpinning the program is about enabling people with dementia to continue to be active participants in their relationships, families, workplaces and communities and not only enhances the life of the individual, but of society more generally.


Project team: Anita Westera, Dave Fildes

Last reviewed: 3 August, 2018

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