Palliative Care Australia (PCA) is undertaking study to evaluate new resources to support people living with dementia discuss their end-of-life wishes. The Care Compass Study resources seek to provide a set of tools to support aged care staff commence conversations with their clients about end-of-life preferences.

The Study will evaluate this initiative, which aims to support people living with dementia and aged care staff to have end-of-life conversations, as well as assess the impact and feasibility of the use of these resources in this setting. The Study will be evaluated by researchers from the Australian Catholic University.

PCA Chair, Dr Jane Fischer says people living with dementia need support to discuss their preferences with their medical team and families.

 “The resources aim to support people living with dementia to identify and begin to discuss their end-of-life preferences early on in the diagnosis. These preferences can then act as a guide for family and carers as they help them to make decisions about their loved ones care,” said Dr Fischer.

Building on the Dying to Talk initiative, the resources were developed in collaboration with HammondCare alongside consultations with Dementia Australia, aged care providers, peak bodies and consumer representatives. The resources were adapted from the Dying to Talk Discussion Starter and the Dementia Australia Accessibility Guidelines guided the design process.  This Care Compass Study also expands the platforms in which the Discussion Starter is available with the development of an app, in addition to the paper based version. The development of these resources has been in association with Dementia Australia and HammondCare.

The Care Compass Study resources have been developed specifically to support people living with dementia to participate in decision-making about their preferences for the end of their life. To achieve this, PCA has worked with HammondCare to develop the content. To ensure this resource is dementia-friendly, PCA has applied Dementia Australia’s Accessibility Guidelines for the design of the resources.  The resources have been reviewed through consultations with aged care providers, peak body representatives and people living with dementia and their carers.

PCA commissioned Les Makai to create the artwork which is featured in the Care Compass Study Discussion Starter Series Booklets and app. Les is an artist who started painting following a diagnosis of Posterior Cortical Atrophy.

Dr Fischer says reflection and conversations about values and health can have a significant difference the quality of a person’s final years or months.

“We are acutely aware that next to coronary heart disease, dementia is the leading underlying cause of death in Australia. The achievements and lessons learned through the study will be used to further build on PCA’s suite of consumer facing resources for people living with dementia.

 “These resources aim to reach into the community to normalise dying in Australia and to help people work out what’s right for them at the end of their lives,” Dr Fischer said.

The Study evaluation will be released in the second half of 2019.