Consumer Engagement in the Aged Care Reform Process

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Across all 16 consultations, the overwhelming view of consumers was that the aged care system is not working well for people with dementia, even less so for people with dementia in diverse communities. 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.

There are a number of themes that emerge from the consultations which have been reviewed in this report. The priority for people with dementia and their families is a focus on the basics of improving care services and being empowered to be involved in decision making about care.

Three main areas emerge as a priority for consumers: diagnosis/assessment, community care services, and quality of services.

Diagnosis/Assessment

For the person with dementia and their family the journey needs to start with a timely diagnosis, referral to support services, properly resourced assessment process and a link worker to provide guidance when needed. Having these services in place early in the disease process has an impact on the whole of the dementia journey.

It was clear throughout the consultations that people thought an impersonal government bureaucracy such as a national Gateway would not be enough to address the need for better information and support. Consumers are not looking just for information but also want guidance and support to make decisions. Consumers indicated a desire for a single ‘case manager’ or ‘dementia nurse’ who could support them throughout the journey from diagnosis, assessment to decisions about residential and community care. Consumers are flooded with information but don’t know how to choose amongst different providers and services. For individuals who did have a key worker they could rely on, the personal relationship with that person was invaluable.

Adequate resourcing of a Gateway would also be key. Consumers currently spend years trying to get a diagnosis and once they finally receive a diagnosis are told they have to wait to get an assessment. Consumer confidence in the assessment process will not improve without a reduction in wait times and staff who understand the special concerns of people with dementia.

In the regional consultations there was a particular concern about whether information in a Gateway would be locally relevant and a reluctance to call numbers that might be answered by someone who is not in their local area and therefore does not know the services that are available. Consumers expressed a reluctance for a new system to replace existing networks which they found to be working well.

Community Care Services

Consumers have a strong desire to keep the person with dementia living at home for as long as possible. But it is clear that this can not be done without the appropriate supports and care services. The current system of community care packages are seen as inadequate and inflexible. Consumers face long waits before they can access services. The lack of transparency in administration costs and artificial barriers in what services can and can not provide leave consumers feeling cheated of the care they so desperately need.

For a person with dementia to remain in the community there is a need for adequate support for carers. This includes flexible respite services that are available when and where they are needed. Day centre models are important for carers who want to continue to work and keep the person they are caring for at home. Ideally, these services also provide the person with dementia with the opportunity for social engagement and participation in meaningful activities. Access to these services is even more difficult in regional or remote areas where carers may have to travel a distance to get only a few hours of respite care.

Increasing community care packages, access to consumer directed care and more flexible respite may address some of these concerns. At the same time, consumer expectations need to be managed. The notion of entitlement to the care that is needed has given some consumers the sense that they may have access to as many hours of community care as they need to keep the person at home.

Quality

Consumers have significant concerns about the quality of aged care services. They have an expectation that any reform of aged care should result in improved quality of services. There is a lack of confidence in current mechanism to address poor quality such as the Complaints Investigation Scheme or the Accreditation Agency. Consumer confidence in the aged care system could be improved by funding community visitors schemes, better access to advocacy services and meaningful consumer involvement in regulation and the complaints processes.

In the late stages of dementia it becomes very difficult to provide the level of care required in the community. Consumers become desperate to find a residential aged care facility that will provide quality care for the person with dementia. It is clear from the consultations that the current quality is often inadequate and at times extremely poor. Many facilities indicate that they provide ‘dementia specific care’ but often this only means that there are locked wards.

Providing quality care to individuals with dementia who often have behavioural and psychological symptoms is challenging. Consumers spoke of understaffed facilities and staff who lacked the training to provide appropriate support to residents. As a result, staff may resort to physical and chemical restraint to manage challenging behaviours. Residents then quickly deteriorate because a lack of physical activity and mental stimulation. Consumers want residential aged care facilities that have appropriate levels of staffing, fair wages for staff and training to ensure staffs are able to provide appropriate care. They want a model of residential aged care that focuses on maintaining skills and physical health instead of one which rewards dependency.

Concerns about quality extended to end of life care. Carers expressed concerns about the person with dementia not having access to palliative care because they were not dying quickly enough. Others indicated that people with end stage dementia were rushed to hospital or given antibiotics against their wishes.

Access to appropriate, high quality care is even more difficult for those with younger onset dementia. There is a need for specialised services which support these individuals and ensure access to appropriate activities and interaction.

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