Addressing the challenges of Advanced Care Planning after dementia diagnosis

The in-depth study, a collaboration between The University of Sydney Cognitive Decline Partnership Centre and HammondCare involved examining academic literature, reviewing reports and extensive public consultation with over 80 people from all states and territories. 

Participants in the consultation included consumers, carers and their advocates, health and aged care providers, academics and government officials involved with Advanced Care Planning.

The seven findings, complied in the final ‘Future planning and advance care planning: Why it needs to be different for people with dementia and other forms of cognitive decline’ report are:

• Advanced Care Planning 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
• Advanced Care Planning should be done as soon as possible after diagnosis of dementia, if not done previously
• Effective Advanced Care Planning 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
• They should be involved in discussions and decision-making as much as possible
• Particular care is needed with transfers between health and care settings

Lead Investigator Professor Meera Agar, Palliative Care Physician says the report highlights the need to focus on empowering people with dementia and their families to feel equipped to have conversations about their values and wishes.

“It’s also important to have a professional workforce who are highly skilled and place value on supporting these discussions,” she says.

“Our research also shows it is imperative that better systems and training are put in place to ensure anyone who is involved in the care of someone who has dementia enquires about earlier discussions, involves the person with dementia as much as possible, and respects these wishes when decisions about care need to be made,” she adds.

Kathy Williams, consumer representative from Alzheimer’s Australia’s Consumer Dementia Research Network says it’s not just about a person’s medical condition.

“It’s about where they’re going to live, who’s going to be caring for them, what kinds of activities they still want to participate in and who can visit,” she says. “Good advance care planning enables control in the future when you don’t have a voice, and it releases family from the burden of decisions.”

Professor Agar will be presenting the findings at a forum in Adelaide on Thursday 6 April 2017. Visit the website for more details. 

The forum will also provide an overview of the resources developed to support an increased up take of advance care planning for those with dementia.  The resources can be found on both the Cognitive Decline Partnership and Alzheimer’s Australia Start2Talk websites.