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Dementia carers unprepared and distressed by end-of-life decisions

Press release November 21, 2018 Dementia Care

New international research from Advance Care Planning Australia (ACPA) reveals that dementia carers need more support and guidance to navigate end-of-life care for their loved one.

Advance Care Planning Australia

Recently published by internationally renowned journal, Palliative Medicine, the study reviewed 81 articles involving around 400 people with dementia and 1864 carers, from 14 countries including Australia, USA and the UK, The study identifies the emotional pressures that arise when people with dementia and their carers confront tough decisions and difficult conversations about advance care planning.

When people with advanced dementia lose decision-making capacity, their carers are left to make high-stakes decisions about their medical treatment.  Decision-making can become fraught and distressing without advance care planning and when a person has not clarified their preferences. Some carers reported feeling they are causing the death of their loved one. 

Other key findings include a general distrust and lack of confidence by carers, regarding the information and support received through aged care and other health providers.

Barriers to discussing advance care planning and end-of-life care included general anxiety about death, reluctance to confront inevitable cognitive decline associated with dementia and fear of being locked into a binding and inflexible pathway of care.

Carers showed a strong preference for high-quality care for their loved one, wanting them to live as well and as ‘normally’ as possible. For this reason many carers delay moving their family member to a residential aged care facility, keeping them at home for as long as possible. 

Funded by the Australian Government, ACPA is the national authority on advance care planning. The organisation supports the general public and healthcare professionals to ensure people’s values and medical care preferences are heard and respected. Central to the ACPA’s charter is increasing the uptake of Advance Care Directives which is currently estimated at less 15% of the Australian adult population.

“This study shows that we have a long way to go in normalising advance care planning and end-of-life discussions. Dementia is an illness with a known trajectory, yet individuals, families, aged care providers and health professionals, still struggle to plan ahead. We need to do better,” says ACPA Medical Director, Dr Karen Detering. 

“Dementia is now a leading cause of death in Australia. Too many people are denied a dignified and peaceful end. Families are needlessly suffering the burden of decision-making on a knife’s edge. This research underscores the pressing need to upskill the community, carers, aged care providers and health professionals so that more Australians are empowered to receive the care they want - whatever the future holds.”

Read study online 


What is advance care planning?
Advance care planning promotes care that is consistent with your goals, values, beliefs and preferences. It prepares you and others to plan for future health care and a time when you may no longer be able to communicate those decisions yourself.  

Key facts 

  • Almost 50% of people will not be able to make their own end-of-life medical decisions
  • Less than 15% of Australians have documented their preferences in an Advance Care Directive
  • A third of Australians will die before the age of 75
  • Most people die after a chronic illness, not a sudden event3
  • Research shows that advance care planning can reduce anxiety, depression and stress experienced by families and that they are more likely to be satisfied with their  loved one’s care

About Advance Care Planning Australia
Advance Care Planning Australia (ACPA) is a national program funded by the Australian Government Department of Health, enabling Australians to make the best choices for their life and health care.

ACPA increases advance care planning resources across health sectors and NGOs, improves workforce capability, produces information resources for diverse consumers and communities, and builds the evidence base.

Media enquiries
Rebecca Camilleri
Advance Care Planning Australia
email: [email protected]
phone: 03 9496 5660 | 0407 832 093


Dementia Care