Advance care planning crucial for people living with dementia - and the carer

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With the increasing number of Australians developing dementia, the need for people living with dementia and their carers to plan ahead for their future care is paramount.

New international research released by Advance Care Planning Australia (ACPA), has revealed many carers are unprepared and distressed about end-of-life decisions that fall to them – in some cases carers reporting that they feel they are causing the death of their loved one under the stress and strain being endured.

Acknowledging the findings Dementia Australia CEO, Maree McCabe said the new research shows dementia carers require more support and guidance to navigate end-of-life care for their loved living with dementia.

“When the person with dementia is nearing the end of their life the experience for a carer often becomes even more challenging and distressing,” Ms McCabe said.

“It is important that the best interests and future care needs of the person living with dementia are arranged and communicated well in advance.

“Having up-front discussions about end-of-life care as early as is comfortable is key so the person with dementia can be directly involved in decisions made about their future care requirements as the symptoms progress.

“And then when the time comes the carer or carers will have the peace of mind and confidence that they are fulfilling on the wishes of their loved one.”

More information about the new international research on advance care planning for dementia can be found on the ACPA website at

Dementia Australia has a range of resources available online at

“Our support team at Dementia Australia is here for everyone who may have concerns or questions. Please do call the National Dementia Helpline on 1800 100 500,” Ms McCabe said.


Dementia Australia is the national peak body and charity for people, of all ages, living with all forms of dementia, their families and carers. It provides advocacy, support services, education and information. An estimated 436,000 people have dementia in Australia. This number is projected to reach almost 1.1 million by 2058. Dementia Australia is the new voice of Alzheimer’s Australia. Dementia Australia’s services are supported by the Australian Government.

National Dementia Helpline 1800 100 500

Interpreter service available

(The National Dementia Helpline is an Australian Government Initiative)

Dementia is a National Health Priority Area

Media contacts: John Noble 0407 019 430 [email protected] / Christine Bolt 0400 004 553 [email protected]
When talking or writing about dementia please refer to Dementia Language Guidelines.