Consumer Engagement in the Aged Care Reform Process

This report, Consumer Engagement in the Aged Care Reform Process was commissioned by the Department of Health and Ageing (DoHA). Alzheimer’s Australia was chosen to conduct a series of consumer consultations in response to the Productivity Commission’s report Caring for older Australians. Sixteen consultations were held nationwide, as well as an online survey for those unable to attend. Approximately 1000 people attended the consultation and 200 responses were received. Across all consultations as well as responses to the online survey, the overwhelming view of consumers was that the aged care system is not working well for people with dementia, even less so for diverse communities. For those with younger onset dementia (YOD) there are no age appropriate services. Consumers are frustrated that they are unable to get the services they need and that the services that are available are often inflexible and of poor quality.

The consultations were a reminder that the quality of life of people with dementia is impacted by issues in the health system. A key concern was delays in diagnosis and failure to refer to support services. A number of consumers also had poor experiences with the acute care sector. Consumers were also concerned about the future and the need for investment in research. For the person with dementia the journey needs to start with a timely diagnosis, referral to support services, properly resourced assessment services and a link worker (not a call centre) to provide guidance when needed. For the family carer access to dementia education, support in managing BPSD and flexible respite is key.