Abstract
To better understand the individual journeys of people living with dementia and their carers through the Australian health-care system. Stories were collected from 25 participants, through five face-to-face workshops, across Australia. This produced 18 visual storyboards and a range of opportunities for improvement, which were then synthesised into an aggregated "ideal-journey" model. Several issues were identified: long lead times to diagnosis; diverse experiences of treatment and support; and little coordination of care or thought for its impact on the consumer. Information about services, their purpose and eligibility criteria was difficult to obtain, and potential care pathways were largely unexplained. Much of the carer support received was reactive rather than proactive. A better understanding of the current health-care pathway of dementia is essential for the design and delivery of future health-care services. It is vital to include the consumer voice in future research and allocation of health-care resources.
Highlights
The Australian health‐care system, including the aged care system, endeavours to meet the needs of all Australians
This study provides a snapshot of the current quality of the consumer journey of people living with dementia and their carers through the Australian health‐ care system
This research project used the “voice of consumers” to develop visualisations of eighteen personal journeys of people living with dementia and their carers
Summary
The Australian health‐care system, including the aged care system, endeavours to meet the needs of all Australians. To understand the effects of the health‐care system on its users more deeply, it is important to examine the real‐life experiences of consumers This examination must include a close investigation of the care pathway from beginning to end. End‐user involvement in health‐care research can enhance the quality of research findings and improve their dissemination and implementation.[4,5] This study provides a snapshot of the current quality of the consumer journey of people living with dementia and their carers through the Australian health‐ care system. The voice of consumers and accounts of their experiences were used to map participants’ unique personal pathways through the health‐care system This provided the researchers with a better understanding of current barriers and potential solutions from the consumer's perspective. This study aimed to demonstrate how consumers experienced the journey (current state) and how they would like to see the journey redesigned (ideal state)
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