Putting the consumer in the driver's seat: A visual journey through the Australian health-care system as experienced by people living with dementia and their carers

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Author(s)
Fitzgerald, Janna Anneke
Curry, Joanne
Meierink, Angelique Olde
Cully, Ashley
Griffith University Author(s)
Year published
2019
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Show full item recordAbstract
Objective: To better understand the individual journeys of people living with dementia and their carers through the Australian health-care system.
Methods: 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.
Results: 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, ...
View more >Objective: To better understand the individual journeys of people living with dementia and their carers through the Australian health-care system. Methods: 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. Results: 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. Conclusions: 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.
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View more >Objective: To better understand the individual journeys of people living with dementia and their carers through the Australian health-care system. Methods: 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. Results: 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. Conclusions: 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.
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Journal Title
Australasian Journal on Ageing
Volume
38
Issue
S2
Copyright Statement
© 2019 The Authors. Australasian Journal on Ageing published by John Wiley & Sons Australia, Ltd on behalf of AJA Inc. This is an open access article under the terms of the Creative Commons Attribution License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited.
Subject
Biomedical and clinical sciences
Human society
Psychology
Science & Technology
Life Sciences & Biomedicine
Geriatrics & Gerontology
Gerontology
caregivers