What is needed to improve care planning for people living with dementia?


A public forum to launch the Report from Activity 5 (National approach to dementia specific advance care planning) and a related resource on family case conferencing for people with advanced dementia was held on 23 May 2016 at the University of Technology, Sydney.

The panel discussion was chaired by Professor Jane Phillips with panel member Imelda Gilmore giving a consumer perspective, and Dr Craig Sinclair and Professors Sue Kurrle, Meera Agar, Dimity Pond, Lynn Chenoweth and Deborah Parker providing comments based on the latest research and their experience.

The discussion explored a wide range of issues pertaining to improving care for those with dementia. Improved decision-making, which involves the person with dementia and supports family involvement was discussed, along with the need to increase uptake of early advance care planning and improving care coordination during transitions between care settings.

Imelda Gilmore spoke about the value of having conversations early on with her husband with younger-onset dementia about decisions that would need to be made later. She indicated it was about focussing on his values and desires. Lynn Chenoweth stressed the importance of person-centred care, which centres on the beliefs and values and what makes them a person and that people with advanced dementia can still communicate even if this in not with words.

Craig Sinclair highlighted that decision-making is an important part of a person’s identity and being supported in this is part of the UN Convention on rights. Sue Kurrle discussed the importance of an advance care plan as part of planning ahead and the need to distinguish between a person’s wishes and what their family wants. Dimity Pond indicated that GPs are in a good position to raise advance care planning and that it is good to involve family members. Meera Agar spoke of the importance of language for example, asking “what would your mum want” rather than “what do you want?” Deb Parker highlighted the need for knowledge translation, the value of education and toolkits and that residential aged care had the two core roles of dementia care and palliative care.

Attendees at the event included consumer representatives, health and aged care providers, government officials, policy and research practitioners as well as those involved in the CDPC in various capacities. Arrangements were made for those unable to make it to Sydney to participate via a webinar. Media was also in attendance and an interview with Jane Phillips and Meera Agar was broadcast on radio 2SER following the forum.
Post-forum interviews were also recorded with a number of panel members and these may be integrated with the resources being developed to assist organisations to implement advance care planning in a more systematic way.

Gail Yapp, Activity 5 Project Officer

A copy of the report is available on the Resources pages at Advance Care Planning Report