Co-designing a model of palliative care for people with advanced dementia

In 2020 a series of stakeholder workshops on palliative care and end of life identified dementia as a priority for the Central Coast area of New South Wales Australia. These workshops resulted in the commissioning of a rapid review of existing models of dementia and palliative care, and a research project exploring end-of-life care experiences of Central Coast residents with advanced dementia. It was intended that findings of the research would support development of an improved model of care for people with advanced dementia living on the Central Coast. On completion of the research in 2022, representatives of the Central Coast Research Institute, HammondCare, and the Central Coast Local Health District initiated the idea to take forward a co-design process across key stakeholders focusing on integrated models of care that improve care experiences, outcomes and effectiveness of services delivered with and for people living with dementia at the end-of-life. The stakeholder group involved managers, researchers, clinicians (including nurses, private geriatricians, allied health professionals, and a general practitioner), aged care providers, and representatives from peak bodies. The group also included four patient and carer representatives. Funding was secured to reimburse representatives for their time. More than 100 stakeholders have engaged throughout the process. The group had an initial meeting to get to know one another and discuss the need for a dementia specific palliative care model on the Central Coast. A follow-up meeting held to establish a shared mission and purpose, and the group agreed to participate in a series of five co-design workshops. In the first workshop, the group identified their top priorities, which were to increase information and education on dementia and palliative care and improve coordination of care and communication across all systems. The remaining workshops were focussed on designing, refining, and testing a logic model. The logic model included inputs and activities such as education delivery, a care coordinator, and multidisciplinary case conferences. These inputs and activities were shown in the logic model to result in short, medium, and long-term outcomes, including reduced healthcare resource use and increased quality of life for people with dementia at the end of life. An accompanying document was created to define elements of the model, explain referral processes, and plans for implementation and evaluation. The next steps for the working group in 2024 are to plan for the education delivery, engage further with primary care, and secure funding to implement and monitor the initiative. The stakeholder group participated in an evaluation survey (n=18). The results of the survey were that 83% were satisfied with the model of care; 89% said there were opportunities for networking and making new connections; and 88% said they ‘always’ felt heard in the workshops. 39% of stakeholders said their awareness of dementia and palliative care services and supports increased. Key learnings for international audiences include the importance of asking the question of ‘whose voices are missing’ from the design of integrated care, and the time it takes to build trusting, collaborative working relationships.