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Dementia carers need more support and guidance to navigate the end-of-life care of their loved one, according to new research from Advance Care Planning Australia (ACPA).

Reviewing 81 articles involving around 400 people with dementia and almost 2000 carers, across 14 countries including Australia and the US, the study pinpointed the emotional pressures that can arise when people with dementia and their carers face difficult decisions and conversations regarding advance care planning.

Carers are often left to make tough calls about medical treatment when people with dementia lose their decision-making capacity and can find it distressing when the person has not clarified their preferences.

Research findings revealed some carers reported feeling that they caused the death of their loved one.

A general distrust and lack of confidence also emerged among carers when it came to the information and support offered by aged care and other health providers.

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

Carers also want their loves ones to live as well and ‘normally’ as possible in their homes, meaning many often delay moving their family member into a residential aged care facility.

The peak national body on advance care planning, ACPA, says the research underscores the pressing need to upskill the community, carers, aged care providers and health professionals so more Australians receive the care they want at end-of-life.

Advance care planning allows people to make choices on their future healthcare in case the time comes when they are no longer able to communicate their decisions.

Figures shows almost 50% of people will not be able to make their end-of-life medical decisions and that less than 15% of Australians have documented their preferences in an Advanced Care Directive.

“This study shows that we have a long way to go in normalising advance care planning and end-of-life discussions,” ACPA Medical Director Dr Karen Detering said.

“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.”