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.

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.”