Supported decision-making

couple with care worker

The “Supported decision-making in dementia care” project team led by Dr Craig Sinclair has produced a range of resources from guides, videos and webinars to inform, educate and guide the community about the importance of supported-decision making.

For a person with dementia, says Dr Sinclair, supported decision-making means helping them make their own decisions through assisting them to understand and weigh up the issues and creating the environment and contexts to enable this.

Enabling people to be involved in decisions that affect their care is also at the centre of the new Aged Care Quality Standards and is consistent with human rights principles and the Australian Law Reform Commission’s ‘National Decision-Making Principles’.

This is in line with the United Nations Convention on the Rights of Persons with Disabilities adopted in 2006 that defines supported decision-making as “the process whereby a person with a disability is enabled to make and communicate decisions with respect to personal or legal matters”.

The policy guide produced by the research team, “Supported Decision-Making in Aged Care: A Policy Development Guideline for Aged Care Providers in Australia” is as an important resource for aged care organisations that includes a self-assessment audit tool, interactive case study for staff discussion and guiding principles for policy development.

The guideline will assist aged care providers in framing their policies in line with human rights principles and the National Decision-Making Principles. It also illustrates how embedding these Principles in policy and practice will assist in meeting incoming Aged Care Quality Standards.

Angela Raguz, who is the General Manager of Hammondcare and oversees all the organisations residential aged care services, spoke of the importance of knowing people well in order to support their decision-making, particularly in the context of decisions that might be seen as ‘risky’.

“Knowing and understanding the person is key to looking at what risk does mean for the individual, as one person’s risk is another person’s life,” she said.

Professor Sue Kurrle, CDPC director and geriatrician, says the ability to make decisions is not an all or nothing thing.
“We have a real issue in medicine today, if people have a diagnosis of dementia it is often assumed they cannot make decisions.

“People with dementia do need support to make decisions, like all of us. They need information, it needs to be provided in a simple and clear way and they need to be able to ask questions and often a step-wise approach is a good way to do it,” she said.
A companion guide for consumers entitled, “Supported Decision-Making: A guide for people living with dementia, family members and carers” is being disseminated across key organisations nationally.

Theresa Flavin who is a dementia advocate and has a diagnosis of dementia says supported decision making is about engaging with the person, providing information and listening.

“It’s about giving the person with dementia the opportunity to express their wishes in the best possible situation,” she said.

Links
Resources include the two guides, videos and webinars that are available on the CDPC website at http://sydney.edu.au/medicine/cdpc/resources/supported-decision-making.php
See article, “How couples with dementia experience healthcare, lifestyle, and everyday decision-making” published in the International Psychogeriatrics, November Special Edition entitled, “Social Aspects of Dementia and Dementia Practice
Radio interview with Professor Kurrle on supported decision-making
Supported Decision Making and Risk video (below)