Experts call for action on dementia care

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Dementia experts and peak body, Dementia Australia, today expressed their disappointment about the Australian Government’s response to the Senate Community Affairs References Committee report: Care and management of younger and older Australians living with dementia and behavioural and psychiatric symptoms of dementia (BPSD).

Maree McCabe, CEO Dementia Australia said the response, tabled in parliament yesterday, is disappointing and it lacked any commitment to decisive action that will make a difference to the health and wellbeing outcomes of people living with all forms of dementia, especially those living with younger onset dementia or living with severe symptoms and the profound impact this has on their lives.

“We need a renewed and sustained focus on dementia for the hundreds of thousands of Australians impacted by the disease every day and to prepare for what we as a community will face in the years ahead,” Ms McCabe said.

“The care and support for people living with dementia remains the biggest social and health challenge facing Australia.

 “We are particularly concerned to note that the Government does not support the ongoing funding of the Younger Onset of Dementia Key Worker Program (YODKWP).

“The Committee’s recommendation in 2014 was to increase the funding and expand the YODKWP.

“Since then, the complexity of the multiple systems that people living with younger onset dementia have to navigate has only increased, with families and carers falling between the cracks of the disability and aged care systems.

“The YODKWP has been a crucial element in the sustained provision of care and support for people impacted by younger onset dementia across Australia.

“The program aims to improve the quality of life for people with younger onset dementia, as well as their families and carers, by providing them with a highly skilled key point of contact with whom they can develop comprehensive strategies that optimise their engagement with support and care options.”

Dementia Australia reiterates its call for the expansion of the YODKWP from a national network of 40 workers to 55 and continuing the program on a temporary basis for two years (until 2020), a move which will assist in a measured transition to the National Disability Insurance Scheme and ensure the widely reported existing gaps in NDIS service delivery are better addressed, especially for these vulnerable Australians.

“The increase in instances of poor quality and adverse outcomes for consumers such as the experience with Oakden Older Persons Mental Health Service is evidence that the needs of people with dementia are not being fully supported through current aged care services,” Ms McCabe said.

“We were concerned to note that the draft aged care quality standards1 do not acknowledge or consider the high risk and prevalence of dementia and associated cognitive decline, despite more than half of all residents in residential aged care having some form of dementia and despite the clear need for providers to have specialist capacity to manage dementia appropriately.

“In the interim three years since the Senate Community Affairs Committee tabled its report and the 18 recommendations, much has changed across the dementia-care landscape, and not all of these changes have been positive.

“Dementia is now the leading cause of death of women in Australia, the second leading cause of death in this country and it is predicted to become the leading cause of death within the next five years2.”

Dementia Australia acknowledged that the Government’s response to the report has noted and supported, in principle, most of the recommendations. The response outlines various activities spread across the breadth and depth of the aged care, disability and mental health care systems, however the fact remains that these are complex systems and challenging to navigate for anyone in the community, let alone those with a cognitive impairment.

“People living with dementia constitute one of the most vulnerable groups in our society,” Ms McCabe said.

“People, of all ages, living with all forms of dementia deserve to receive appropriate and quality care and to be treated with respect and dignity.”


Dementia Australia is the national peak body for people, of all ages, living with all forms of dementia, their families and carers. It provides advocacy, support services, education and information. An estimated 413,000 people have dementia in Australia. This number is projected to reach more than 1.1 million by 2056. Dementia Australia is the new voice of Alzheimer’s Australia.

National Dementia Helpline: 1800 100 500

Interpreter service available

(The National Dementia Helpline is an Australian Government Initiative)

Dementia is a National Health Priority Area

Note to Editors: More detailed responses attached.

Media contacts: Christine Bolt, 0400 004 553, [email protected]

When talking or writing about dementia please refer to Dementia-Friendly Language Guidelines.

1 Department of Health (2017). Single Aged Care Quality Framework - Draft Quality Standards Consultation Paper.
2 Australian Bureau of Statistics (2016) Dementia: Australia’s leading cause of death? Accessed online.