This week is Dementia Action Week, a time to raise awareness about dementia, provide support for people living with dementia and celebrate those who care for them. 

People living with dementia can live active and fulfilling lives, however often experience discrimination, loss of autonomy and vulnerability, as discussed by Theresa Flavin who was diagnosed with younger onset dementia.   

With a focus on supporting people living with dementia, the UNSW Ageing Futures Institute felt it was an opportune time to highlight the need for Advance Care Planning. Advance Care Planning is a process of planning for your current and future health care. It involves talking about your values, beliefs and preferences with loved ones and doctors. This can help them if they ever need to make decisions about your care when you can’t. Research shows that Advance Care Planning has a range of benefits, but is often undertaken too late, or during a current health crisis. 

Ageing Futures Institute Investigator Dr. Craig Sinclair, an Advance Care Planning Australia Ambassador, has recently received funding as part of the NHMRC Targeted Call for Research in End of Life Care to investigate this problem. The Enhanced Advance care planning and life Review Longitudinal Intervention (EARLI) project team will work with community aged care providers to recruit older adults receiving aged care services at home. 

While the study will recruit a range of older adult participants, the intervention will also accommodate the care planning needs of people living with dementia. By reaching out to people at the time of commencing aged care services at home, the team aim to provide a more holistic type of Advance Care Planning, in a relaxed, familiar environment, and with a focus on living as well as possible now, while also planning for possible changes in the future. This echoes the wishes of people with dementia, who have called for greater post-diagnostic support to live well with the condition.

Institute Director, Professor Kaarin Anstey, reiterates the importance of Advance Care Planning.

“People living with dementia face daily challenges in basic decision making, as the dementia progresses the ability to communicate their wishes around health care reduces. Administering the Advance Care Planning process early in life ensures quality of care is achieved, based on decisions made by the individual at a time where they were capable of deciding for themselves.”

The EARLI project will run to the end of 2026.   

For more information on Dementia Action Week visit

For more information on Advance Care Planning and Dementia visit