The Department of Health and Ageing (DoHA) commissioned Alzheimer’s Australia 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 suggest that the Productivity Commission (PC) has underestimated the issues that continue to beset aged care in the provision of care for people with dementia both in the community (and particularly respite care), in residential care, and in the broader health system. The challenges to accessing appropriate services are even greater for individuals with severe behavioural and psychological symptoms of dementia (BPSD) and those with YOD.
If one of the objectives of aged care reform is to assist those who are able, to stay longer in the community a priority is for more community services delivered flexibly that respond to the needs of individuals and their family carers. Consumer directed care (CDC) models are central to that goal.
For many people with dementia, placement in residential aged care will be inevitable and the consultations suggest that there are serious concerns about the quality of care and the difficulty the family carer has when making choices between facilities that all claim to provide quality dementia care. Consumers feel that to improve quality of care there is a need to address workforce issues including equitable pay, training and staffing levels.
The priority for people with dementia and their families is a focus on the basics of improving care services, hence it is important in undertaking reform that the possible establishment of new organisational and program structures does not distract from the extent to which the current arrangements are failing older people every day.
The consultations were a reminder that the quality of life of people with dementia is impacted by issues in the health system. Again in these consultations 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. If the basics are covered in the reform process, there may be some chance of the stories told by people living with dementia being more positive in the future.