Pathways and Service Navigation

The key worker role for people with dementia and their carers

Susan Koch

Lead Investigator: Dr Susan Koch

Delay in diagnosis and difficulties in accessing health care services impact on people in the community living with memory loss and their carers and families. This increases the risk for misdiagnosis, inappropriate management, poor psychological adjustment and reduced coping capacity and ability to make plans for the future.

Several ‘key worker’ support models have recently been implemented in Australia and overseas. These are designed to assist people with cognitive impairment (and their carers) to adjust to living with memory loss, navigate the health and aged care system, and access services, information and support.

This project:

  • evaluated the existing models of ‘key worker’ or ‘support worker’ roles; and
  • developed recommendations to inform policy change and provide a basis for further implementation of the key worker models within different organisations such as Medicare Locals, Alzheimer’s Australia organisations, community nursing groups and other partner organisations.

The study performed a systematic review of current dementia key worker models in Australia and internationally. Results from this review informed the development of a framework to be used to evaluate current Australian key worker/support worker roles.

Subsequently, the evaluation of current roles will be used as a basis on which to shape future key worker/support worker models.

Summary report: What is the Effectiveness of the Support Worker Role for People with Dementia and their Carers/Family living in the Community?

Prototyping alternative respite models for older people with cognitive decline and their carers

Lead Investigator: Dr Susan Koch

The Weavers model responds to reported evidence that respite programs for the carers of people with dementia are designed around institutional paradigms that often fail to meet the needs of carers, and, in some cases, cause further disruption and burden. Helping Hand, and the Australian Centre for Social Innovation (TACSI) have been developing new approaches using the ‘radical redesign’ methodology, which involves consumers and service users in the development of solutions and outcomes which reflect their own wishes and desire.

This two-year project included an initial, real-time testing of the Weavers prototype. The prototype phase was based on a comprehensive literature review and service co-creation process, which had already been conducted.

The second phase involved a second Weavers prototyping project with Southern Cross Care. This included additional ethnographic research and testing of the major interactions that came out the initial prototype, along with the development of a scoping report that places the prototyped Weavers program within the context of the relevant community.

Following the prototyping stages, TACSI conducted an evaluation in conjunction with the Centre’s Management of Change and Workforce and Technology and Ttelehealth Enabling units, using the results and to inform further implementation plans and policy developments.

Outcomes: The prototyping project identified change strategies that are successful at transforming client-developed solutions into practice. The evaluation of the prototype respite models will also be presented to the Australian Government as a series of recommendations on how to develop respite guidelines and programs. We believe the model will be able to be duplicated across all aged care respite programs. The Weavers model will be tested in two organisations, with national policy implications.

Weavers Evaluation Report

The psychosocial impact on the young people having a parent with younger onset dementia

Karen Hutchinson
Susan Kurrle

Lead Investigator: Prof. Susan Kurrle, A/Prof. Chris Roberts and Ms. Karen Hutchinson

There has been very little research about how having a parent with younger onset dementia (YOD) affects young people. Getting the young person’s perspective is very important to understand the impact on them and the whole family. The family dynamics change and often there is family breakdown at certain points as the disease progresses. The purpose of this research is to evaluate the impact of having a parent with YOD, under 65 years, within the family and the consequences on the young people between ages 10-24 years. Particularly looking in terms of emotional impact, social stigma and exclusion.

Through individual confidential interviews with young people between the ages of 10-24 years, parents with YOD and the non-dementia parent we can gain a greater insight.

The research identified common issues, experiences and highlight risk factors when crises may occur. This research program has been converted to a PhD that will expand this project to assist in the development of preventative and supportive interventions and strategies for the families.

Project publication: Empowerment of young people who have a parent living with dementia: a social model perspective, International Psychogeriatrics / Volume 28 / Issue 04 /April 2016, pp 657-668

Understanding the Journey Better: An exploration of the current “state of play” of the health care journey experienced by people living with cognitive decline and their carers


The aim of this study was to use the consumer’s voices to map the 'current' state of the healthcare journey, in order to identify opportunities for improvement and create an 'ideal' state.

The project provided a snapshot of the ‘current’ state of play in the consumer journey through the health care system for those living with cognitive decline and their carers. In doing so, this project provides the ‘pre’ study to how the journey is experienced at present (current state) and how consumers would like to experience it (future or ideal state).

The 'current' state information was used as a baseline measure to indicate at what points of the journey the CDPC is impacting those living with cognitive decline and their carers, and where future research efforts might focus.

Information was solicited from people living with dementia and their carers via two workshops: the first one will focus on “:what is happening now”, the second: what was captured in a story board and is presented for validation.

Final Report: Understanding the Journey Better: An exploration for the current 'state of play' of the health care journey experienced by people living with cognitive decline and their carers.