Improving dementia and palliative care through the co-design of an integrated model of care
Zoi Triandafilidis
A B C D * , Nicholas Goodwin A B C D , Karen Hutchinson B E , Sarah Yeun-Sim Jeong B F , Suzanne Lewis A C , Nicolette Hodyl G , Georgie Quick B , Jacinta Hensby B and Andrew Montague H
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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.
Keywords: co-design, dementia, integrated care, model of care, palliative care, program logic, service delivery, workshops.
Introduction
Globally, the care needs of people with advanced stage dementia are not being met by current palliative care services, with people with dementia being less likely to be referred to palliative care teams and to receive palliative medications.1 In Australia, recent research has identified multiple areas for improving the quality of end-of-life care people with dementia receive, including providing greater support to prepare advanced care documentation and timely consideration for palliative care.2,3
While there is strong evidence that the principles of best practice palliative care for people with advanced dementia are well known, there are limited examples of translation of this knowledge into integrated models of care which have been implemented and evaluated.4
Co-design refers to active collaboration between stakeholders to design solutions to a problem,5 and has been found to lead to the development of palliative care services which are well received by end-users.6 Co-design and the involvement of end-users is becoming a popular methodology in the design of services for people with dementia7 and in palliative care.8,9
Objectives
This report aims to describe the process of co-designing a model of integrated, person-centred palliative care for people with dementia at the end of life and has been prepared according to SQUIRE (Standards for QUality Improvement Reporting Excellence) reporting guidelines.10
Participants
The number of stakeholders who attended each workshop ranged from 18 to 37 people (mean of 26 people). Stakeholders attending the workshops were affiliated with universities, not-for-profits, local health districts, primary care organisations, and private practice, and held roles as researchers, clinicians, managers, and lived experience representatives. Stakeholders were asked to reflect on whose voices might be missing from the room, and snowball sampling was encouraged.
Methods
Stakeholders on the Central Coast were invited to participate in the co-design of an integrated model of care to improve care for people living with dementia at the end of life. The project was informed by KA McKercher’s (2020) four principles of co-design: share power, prioritise relationships, use participatory means, and build capability.11
The workshops are summarised in Table 1. Workshops were approximately 3 h in length, and delivered in a hybrid style, allowing people to join in-person or online via video conferencing (Microsoft Teams). Large and small group discussions were used to facilitate conversations where everyone could be active participants. During workshops, participants were asked to introduce themselves to one another, and there were scheduled break times with catering provided, where participants were encouraged to mingle and connect.
| Workshop | Month | Participants | Focus | Objectives | Activities | |
|---|---|---|---|---|---|---|
| 1 | February 2023 | 37 | Introductions and establishing the need | To establish the need for a dementia-specific palliative care model on the Central Coast. | In small groups and all together, participants discussed the need for a dementia-specific palliative care model on the Central Coast, what is already known about palliative care for people with dementia, and how we might use the co-design process to design a model of care. | |
| To understand what we know about palliative care for people with dementia. | ||||||
| To discuss a co-design approach. | ||||||
| 2 | March 2023 | 27 | Mission and purpose | To clarify the group’s purpose and mission. | Pre-prepared purpose and mission statements were presented to the group and a discussion held to gain group consensus. | |
| 3 | May 2023 | 24 | Diagnosis | To undertake a root cause analysis of the underlying challenges and issues that lie behind the need for integrated care to support its design and development. | The facilitator gave a presentation on key issues in dementia and palliative care. Participants broke into smaller groups to conduct a five ‘whys’ analysis to understand the underlying issues.12 Each group asked a series of ‘why’ questions relating to the issue of why people with advanced dementia do not always receive quality end-of-life care. Following this exercise, the group established their top six priorities. | |
| To identify the group’s top priorities for action. | ||||||
| 4 | July 2023 | 18 | Analysis | To identify and arrange the inputs, activities, and outputs required to achieve the desired short-, medium-, and long-term outcomes. | The facilitator gave a presentation on what a logic model is and ran an exercise to practice logic modelling skills. Smaller groups were then formed to brainstorm components of the model, beginning with the desired outcomes, and working back to identify inputs, activities, and outputs. | |
| 5 | August 2023 | 25 | Design | |||
| 6 | October 2023 | 29 | Review | To explore the role of the dementia care coordinator as an input in the model, and to review the model. | The group reviewed the draft program logic using the Australian Institute of Family Studies Program Logic Checklist,13 identifying changes to the program logic. The need for an accompanying document explaining details of the model was identified. | |
| 7 | November 2023 | 24 | Testing | To assess face validity of the model with a new audience. | Participants were delegates at the 3rd Asia Pacific Conference on Integrated Care, Sydney, and included CEOs, program managers, clinicians, academics, and health service managers. A presentation on the project was given and delegates were presented with the draft model before splitting into four groups, each in turn discussing the following elements: (1) care coordination; (2) the needs of carers of people with dementia; (3) implementation and sustainability of the model; and (4) evaluation of the model. |
A four-item survey was conducted to evaluate participants’ views about the co-design process using Mentimeter (an app which collects real-time feedback). Participation in this survey was optional and responses were anonymously submitted.
Ethics
The evaluation survey was authorised as a Human Research Ethics Committee Exempt Low/Negligible Risk Research application by the Central Coast Local Health District Research Manager on behalf of the Central Coast Local Health District. It was deemed that the ethical requirements for the project could be waived as it was considered low-risk research and therefore further ethical review was not required, in accordance with sections 5.1.18 to 5.1.23 of the NHMRC National Statement on Ethical Conduct in Human Research (2007; updated 2018).
Outcomes
Mission, purpose, and top priorities
The stakeholder group’s agreed mission was ‘to improve care experiences and outcomes for people and carers living with dementia at the end of life’, and purpose was ‘to work collaboratively to establish a value case for an improved model of care for people living with dementia and carers at the end of life to enable funding for a pilot project’. The top three priorities identified by stakeholders were to: (1) increase information and education on dementia and palliative care; (2) improve coordination of care; and (3) achieve greater communication across all systems.
Analysis and design
Stakeholders identified the desired short-, medium-, and long-term outcomes of the model, before working backwards to then identify the inputs, activities, and outputs required to achieve those outcomes. The resulting program logic model is shown in Fig. 1.
Review and testing
The program logic was critically reviewed by a range of stakeholders both internal and external to the co-design project. In the sixth workshop, the co-design stakeholder group review identified that an accompanying document was needed to provide definitions of key concepts, explain referral processes, and outline plans for implementation and evaluation. Members of the stakeholder group then presented the model and the accompanying document with details about the model to 25 delegates at the 3rd Asia Pacific Conference for Integrated Care in Sydney in November 2023, and ran a workshop to garner further feedback on the model. Conference delegates highlighted the need to further clarify eligibility criteria, referral pathways, and terminology such as ‘advanced dementia’, and suggested greater consideration be given to how the model will meet the needs of Aboriginal peoples. The need for mapping and engagement of existing services and how the model will fit within this landscape was also raised.
Evaluation survey
Eighteen members of the stakeholder group participated in the survey. Most stakeholders reported being satisfied with the model of care (n = 16, 89%), with one stakeholder reporting feeling neutral (n = 1, 6%) and another unsatisfied (n = 1, 6%). When asked about outcomes from the co-design process, most stakeholders reported they had opportunities for networking and making new connections (n = 16, 89%), and more than one in three said they had increased awareness of dementia and palliative care services and supports (n = 7, 39%). When asked if they felt the workshops allowed them to be heard, most stakeholders said ‘always’ (n = 15, 83%), two said ‘sometimes’ (11%), and one did not respond. The final question of the survey allowed the stakeholders to share comments, with the most common responses being that stakeholders were thankful and appreciated the opportunity to be involved in the process (n = 6), they were grateful for the passion and enthusiasm of the other stakeholders involved (n = 5), and spoke about next steps and implementation of the model (n = 5).
Discussion
This case study outlines a process for co-designing a model of integrated, person-centred palliative care for people with dementia at the end of life on the Central Coast of New South Wales. This process included establishing a group with a shared mission and purpose, identifying priority areas, developing a program logic model, and seeking external feedback on the model. An evaluation revealed stakeholders were satisfied with the model they co-designed and were interested in next steps for implementation. This suggests there will be ongoing engagement and a sense of ownership in the model, which can, in turn, increase the chances of long-term sustainability and impact. The implementation of the model and short-, medium-, and long-term outcomes of it will be the focus of ongoing work. The evaluation also found that the co-design workshops facilitated connection and networking between stakeholders and provided a conduit for information sharing. However, the evaluation was conducted with a convenience sample and likely reflects a positivity bias. Future research would benefit from understanding the experiences of people who declined to participate or dropped out throughout the process.
Lessons learned
Allow time for all voices to be heard
Attempts made to share power in the workshops appeared successful, with the evaluation finding most stakeholders ‘always’ felt heard in the workshops. This redistribution of power is part of a broader move towards ‘people-driven care’, which has been suggested to be a more effective route to care integration.14
Relationships are important
Strategies were used to prioritise relationships, including allocating time for stakeholders to introduce themselves. Success in this domain is again reflected in the evaluation results with most stakeholders reporting opportunities for networking and making new connections.
The co-design process can help to build capacity
Increasing information and education on dementia and palliative care was a top priority identified by the stakeholder group. In the evaluation, more than a third of stakeholders reported an increased awareness of the dementia and palliative care services and supports available, demonstrating co-design’s potential for capacity building. Members of the stakeholder group also had the opportunity to facilitate a workshop at an international conference and co-author peer-reviewed conference presentations and publications.
Evaluate your efforts
Evaluation of the co-design process identified high levels of satisfaction with the model of care developed, which suggests the potential for this methodology to be applied globally in the development of integrated care initiatives.
Co-design creates a strong foundation for implementation of integrated care initiatives
Having taken a co-design approach, stakeholders are in a strong position to move into the implementation phase with a foundation of shared ownership for delivering the model. Further work is needed to ensure ongoing partnership with all stakeholders during implementation of the model.
Data availability
Deidentified text files summarising the co-design workshops and results from the evaluation survey can be obtained by contacting the authors.
Declaration of funding
This work was supported by the Hunter Medical Research Institute 2023 Healthcare Transformation Research Program’s small grants opportunity.
Acknowledgements
We would like to acknowledge all members of the Dementia and Palliative Care Working Group for their participation in the workshops and contributions to the development of the program logic model.
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