Planning for Later Life

Systematic review and scoping study for the implementation of a national approach to dementia specific advance care planning

Meera Agar

Lead Investigator: Professor Meera Agar

Advance care planning is the dynamic process of articulating the care the individual would want to receive if they were in the future unable to speak for themselves. An important part of this decision-making involves assessing and understanding a person’s preferences for care through ongoing discussions with themselves if competent and/or their family members or surrogates if the person is unable to speak for themself. This process is crucial in situations where predictable cognitive decline will occur. Equally it is important to communicate goals of treatment with significant others and healthcare providers so to ensure these inform treatment decisions. Though there is no argument about the critical need for advance care planning

There has been rapidly evolving number of advance care models with related documentation and processes, many developed in care setting “silos”. A national and consensus approach is needed based on existing evidence and known barriers to implementation in each care setting. The legislative frameworks also need to be addressed and the competencies of the health professionals who should facilitate these discussions need to be defined.

The project involved the synthesis of existing national models of advance care planning that are relevant for the person with cognitive decline. Advance care planning processes, documentation, and implementation/evaluation strategies, the location of care in which they have been developed/evaluated and the robustness and sustainability improvements in outcomes for the person with cognitive impairment were examined. This project included systematic literature review, a grey literature search (for example policy documents), individual approach of key organisations and stakeholders to seek information on advance care planning projects, implementation, sustainability, costs and evaluation.

Based on this review, the project has made seven key findings to improve the uptake and quality of advance care planning for individuals with cognitive decline, each supported in the report with a number of specific recommendations and actions for government, organisations and individuals.

Report - Future Planning and Advance Care Planning. Why it needs to be different for people with dementia

Companion document - Future Planning and Advance Care Planning. Why it needs to be different for people with dementia

The policies and practices of financial institutions around substitute decision making

Sue Field

Lead Investigator: Ms Sue Field

As people age, they stand a greater chance of developing some form of dementia. If people lose their mental capacity, who can make financial and/or personal and health decisions for them? State laws allow them, while they have mental capacity, to appoint someone to make financial decisions (enduring powers of attorney) for them should they be unable, or unwilling to look after their financial affairs.

There is, however, some evidence of financial institutions not recognising these documents. This can obviously pose problems for the attorney when attempting to act on behalf of the person appointing them.

This study has examined the policies and practices of financial institutions in New South Wales in recognising enduring powers of attorney and the experiences of consumers who have had both positive and negative dealings with financial institutions when acting on powers of attorney.

The aim of the study was to highlight the issues, develop some educational packages for financial institutions and consumers, and recommend changes to simplify this area of law, and create uniformity among the various states and territories.

Read the final report here The policies and practices of financial institutions around substitute decision making

Optimising advance care planning in dementia through supported decision-making: An exploratory mixed methods study of community perceptions and law reform challenges in Australia


Lead Investigators: Dr Craig Sinclair, Professor Meera Agar, Ms Sue Field, Professor Susan Kurrle

Supported decision-making aims to assist people with cognitive impairment to maintain involvement in decision-making, typically through provision of a ‘support person’ (or persons). The Australian Law Reform Commission recommends that legislation should encourage supported decision-making, however little is known about community perceptions towards this approach, or practical factors associated with implementation.

This project investigates community perceptions towards supported decision-making in the context of cognitive impairment. People with dementia, family caregivers of people with dementia and key health provider groups will be interviewed and surveyed, to assess community perceptions and identify barriers to implementation. Working groups of clinicians, consumers and policy-makers in each state will meet to discuss the research data, identify areas of current best practice, and establish strategies for broader implementation in each state. The researchers will also study existing laws, court cases and tribunal hearings across three Australian states (New South Wales, Western Australia and South Australia), to identify areas for future law reform. Based on study findings, the investigators will develop educational materials and practical resources to assist community members and healthcare providers to support decision-making among people with cognitive impairment.