Many older people and their families say they feel confused and overwhelmed by reforms taking place in aged care and are sceptical they can deliver on the promise of increased consumer choice and control, a large-scale qualitative study has found.
The University of Sydney in partnership with aged care provider The Whiddon Group conducted interviews and focus groups with 54 current and future consumers and 57 aged care providers, health services and assessors across eight locations in NSW to better understand needs and perceptions of aged care.
The research, which was conducted across metropolitan, regional and rural NSW in late 2016, found a majority of consumers felt ill-informed and uncertain about the services available, their eligibility and the costs involved.
The scale of the changes taking place in the aged care system further contributed to feelings of confusion and helplessness among consumers, the data analysis conducted by Professor Yun-Hee Jeon found.
Karn Nelson, executive general manager strategic policy and research at Whiddon, said she was surprised by the “level of frustration, confusion and even despair” expressed by consumers.
Ms Nelson said the research confirmed the need for one-on-one support and advocacy to help consumers understand the system and the range of services available to meet their individual needs.
She said a system navigator service as recommended by the Tune Review would be a welcome development, but it had to be recognised that navigation support was a widespread need in the community and not just a minority concern.
While acknowledging there was further planned investment in the My Aged Care gateway, Ms Nelson said Australia could also learn from initiatives currently underway internationally to improve information, advice and support to consumers. For example, she said Ireland has introduced ‘information parlours’ manned by volunteers to help older people understand their aged care options, access services and fill in paperwork.
Service providers in the study also expressed uncertainty about consumers’ ability to adequately assess which services would best meet their needs, which highlighted the need for decision-making support.
Ms Nelson said most consumers did not have the information, skills or capacity to navigate a complex aged care system, especially at a time of urgent need.
“While the figure is improving, around 60 per cent of the people who call us through our enquiry lines are in crisis when they are trying to access aged care,” Ms Nelson told Community Care Review.
Those with poor digital literacy skills, cognitive impairment or limited family and support networks faced additional barriers in accessing services and exercising choice, she said.
Ms Nelson said as long as consumers continued to feel uninformed, disempowered, fearful and unable to anticipate what they might need, the cycle of delaying aged care planning and accessing care at a point of crisis would remain.
“During data analysis it became evident that consumers wanted tailored services to their preferences and needs, but choices given were often either meaningless or confusing,” said Professor Jeon.
“Choice without sufficient information and guidance is no longer a choice,” she said.
Study participants also identified unmet need for psychological and mental health support services for older people as well as dementia services, particularly in rural areas.
Qualitative data will be gathered again next year to identify any changes in the perceptions of consumers and sector stakeholders. This data collection will also seek to capture the impact of the deregulation of home care on consumers, which commenced in February.
Consumer peak groups and the National Aged Care Alliance have been calling for improvements to the quality and accessibility of information and face-to-face support available for older people.