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People with dementia need more support for decision-making

22 March 2021
Lawyers call for legal reforms
People living with dementia need support to make their own lifestyle and health care decisions. Supported decision-making can secure the rights, will and preferences of people with disabilities.

Australia is falling behind in meeting its obligation to the Convention on the Rights of Persons with Disabilities to provide active decision-making support to people with dementia, according to new research.

Australia is obliged under the Convention to provide decision-making support for all people with cognitive impairment. The largest class of people with cognitive impairment in Australia is those living with dementia.

“People with dementia are particularly vulnerable,” says Cameron Stewart, Professor of Health, Law and Ethics at Sydney Law School. “When someone is diagnosed with dementia they need to make a range of lifestyle and health care decisions. But the progressive cognitive impairment associated with dementia means that some people, in some situations, will lack the ability to understand the relevant information or to weigh options to make a decision independently.”

Published in the Journal of Law and Medicine, the research examined current legal approaches to decision-making for people with dementia in four jurisdictions (New South Wales, South Australia, Victoria and Western Australia).

It found that people with dementia are often assigned a guardian who then makes decisions on their behalf. Under the Convention, the guardian should place the disabled person’s own will and preferences at the centre of decision-making and provide the person with dementia with support to make their own decisions. Supported decision-making can secure the rights, will and preferences of people with disabilities.

The research examined how each of the four Australian jurisdictions incorporated supported decision-making into their frameworks. They varied greatly.

Dementia decision-support

Professor Stewart says the research highlights:

  • Australia’s need to advance the implementation of support decision-making for persons living with dementia in line with international obligations under the Convention
  • Researchers suggest a nationally consistent statutory recognition of presumption of capacity; a strict application of the “necessity” requirement for guardianship orders, and the introduction of regulatory structures around the governance of supported decision-making arrangements will go some way to realising these aims.
  • Management of family conflict is needed to prevent unnecessary guardianship orders
  • More services and informal support are needed to assist in enacting decisions in line with preferences
  • More research is needed to ensure best practice in informal support for decision-making

The study is released alongside National Advance Care Planning Week (22-26 March) where family members are advised to plan out important life decisions and choices in advance.

Professor Cameron Stewart is the Director of Sydney Health Law at Sydney Law School. Funding for this research came from an NHMRC Partnership Centre Program Grant. Top photo: Pixabay

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