Australia is failing to meet the human rights of people with dementia, the nation’s primary public health research agency says.

Richard Colbeck

In a perspective published  online in the Medical Journal of Australia the NHMRC’s National Institute for Dementia Research Special Group in Rehabilitation and Dementia says services in Australia for people with dementia are inadequate.

“Australia does not currently meet the human rights of people with dementia to timely and accessible health services of appropriate quality or to participation in health care decisions,” the group writes.

It says services for people with dementia are often fragmented, challenging to navigate and hard to access.

Getting a diagnosis can be difficult; there are limited health and social services after diagnosis; and aged care services lack both staff and skills.

A philosophical and societal shift in thinking is required, the group says, from provision of care to enablement, and towards empowering people with dementia to direct their own lives.

National Framework lapsed

The NHMRC is calling for an improved policy approach following the lapsing in 2019 of the current National Framework for Action on Dementia.

The article says a new framework must include models of service delivery that considers accessible pathways to diagnosis and seamless, ongoing support for the person living with the condition and their carers.

This means a single point of entry, case management and the involvement of a multidisciplinary team, the group says.

The service needs to be developed with input from people with dementia, their carers and the federal government.

It should also be accessible, economically sustainable and focussed on wellbeing, and should recognise dementia as a disability.

The new framework must also be underpinned by human rights principles, the NHMRC says, and tested in a coordinated series of pilots.

New framework to be developed this year

A spokesperson for senior Australians and Aged Care Richard Colbeck said consultation for a new strategy was put on hold last year because of covid and a “reprioritisation” of the work of the new National Cabinet structure that replaced COAG.

The 2015-19 framework would continue to guide government policy during the development of a new national dementia strategy informed by the findings of the royal commission this year, the spokesperson said.

“In the meantime, the Department of Health continues to work with Dementia Australia and a range of delivery partners, to ensure Australian government funded dementia support programs have a strong focus on improving information, advice and care services for people living with dementia,” the spokesperson said.

The spokesperson said the government is also continuing to prioritise research into improved care delivery models based on patient centred care for people living with dementia.

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