Improving dementia and palliative care through the co-design of an integrated model of care

Abstract

A need exists to improve end-of-life care for people with advanced dementia, by integrating available services. Stakeholders on the Central Coast of New South Wales united to co-design an improved model of care that would integrate care across care settings. The aim of this project was to co-design a model of integrated, person-centred palliative care for people with dementia at the end of life. This case study describes seven co-design workshops which took place in 2023 to develop a program logic model. Workshops were run in a hybrid format, with stakeholders attending in person and online. Workshops were attended by an average of 26 stakeholders including people and carers with lived experience of dementia, healthcare workers from hospital and community-based services (public and private), primary care clinicians, and participants from the not-for-profit sector and academia. Stakeholders developed a shared mission and purpose and identified priority areas for improving palliative care for people with advanced dementia. This led to the development of a program logic model, which included components relating to education for people with dementia, carers, and professionals, care coordination and referrals, and regular multidisciplinary case conferences. Feedback on the model from a new audience identified areas for improvement. The stakeholder group participated in a survey to evaluate the effectiveness of the co-design. The survey found that stakeholders were satisfied with the model of care the group developed. This project highlighted the value of adopting a co-design approach with stakeholders to develop a new model of care.