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Start advance care planning early for people with dementia: report


Residential aged care was often too late for people with dementia to begin a conversation around advance care planning (ACP), and community care providers should have systems in place to develop and support care plans, according to new research.

For ACP to effectively meet the needs of people living with dementia and other cognitive decline, specific considerations must be made to the way they are conducted, according to the report, based on a partnership between the Cognitive Decline Partnership Centre and provider HammondCare.
Future Planning

The report calls for plans to be done as early as possible, cover a range of time periods and issues, such as financial, lifestyle and health-related decisions, and that the person with dementia appoint one or more substitute decision maker.

“Dementia poses unique challenges for ACP because incapacity to make decisions is more certain than in other diseases and is progressive over a long period. If ACP is left until near the end of life, it will be too late for those with dementia to fully participate,” the report said.

Currently ACP was often prompted on entry to residential aged care which had benefit, but people at this stage had often lost some decision-making capacity or ability to communicate, the report noted, recommending that primary and community care providers were equipped to support ACP.

Professor Meera Agar, lead investigator on the report, told Australian Ageing Agenda that when entering residential aged care, people with dementia were often already dealing with the need to make immediate decisions regarding clinical care and substitute decision makers.

“They’re no longer talking about hypotheticals or things that are well into the future that you’ve got time to consider,” she said.

“People need to have these conversations before they get unwell or at the time of diagnosis, and their substitute decision maker needs to be better equipped, so by the time someone needs residential care, the conversation continues.”

Reaching out to the community

Greater co-ordination was required across all sectors in order for ACP for people with dementia to be effective and of high quality, said Professor Agar.

In this sense, aged care providers could not work in silos, and needed to see themselves as a “service within the community”, she said.

In particular, she encouraged residential providers to reach out and create networks within the community in order to educate people on the importance of having a care plan before entering aged care. This could be done through referral networks, or by engaging with local councils, health districts or groups such as RSLs.

“I think if we all took a little bit of responsibility for the community around us, we would start to broaden people’s awareness of the importance of advance care planning,” she said.

The report also recommended that continuity of care and communication was needed when people with dementia were transferred between healthcare settings, such as between a hospital and an aged care facility.

Providers should pass on appropriate documentation when required, and also ensure they had received adequate information from hospitals upon a resident’s discharge, said Professor Agar.

The report’s key findings:

  • ACP should cover an extended period of time and include a wide range of issues
  • Individuals should receive a timely diagnosis of dementia and information about the potential prognosis
  • ACP should be done as soon as possible after diagnosis of dementia, if not done previously
  • Effective ACP requires conversations that focus on understanding a person’s values and beliefs, and what is important to them
  • The appointment of one or more substitute decision-makers is critical
  • People with dementia should be involved in discussions and decision-making as much as possible
  • Particular care is needed with transfers between healthcare settings

The report was based on a review of literature and resources, as well as interviews with more than 80 people including consumers, carers, health and aged care providers, academics and government officials.

You can access the report here.

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