Empowering Better End of Life Dementia Care (EMBEDCare): Co-design of a Digital Framework for Integrated Palliative Dementia Care to Support Holistic Assessment and Decisionmaking (Sampson, 2023)

Davies N., Gillam J., Aworinde J., Harvey C., Phillips B., Kenten C., Sampson E.L., Evans C.J., Ellis-Smith C. 

Palliative Medicine 2023;37(1 Supplement): 122. 

Available online at this link 

Background: People with dementia experience a variety of palliative care needs which they cannot always express and therefore go unmet. We must optimise how we deliver palliative dementia care and empower people with dementia, carers and professionals to better assess,monitor needs, and manage distressing symptoms. 

Aim(s): Describe the co-design process and components of a framework for integrated palliative dementia care to support holistic assessment and decisionmaking for community and care home settings. 

Method(s): Using a systematic approach we co-designed the EMBED-Care Framework. Using framework analysis we synthesised data from evidence reviews, large data, and a cohort study to identify unmet palliative care needs of people with dementia. We presented the data in workshops, using nominal group with people with dementia, carers, and health and social care professionals, to construct the components, design and implementation requirements. User testing identified changes needed and refinements to the framework for clinical practice. 

Result(s): The Framework was co-designed for delivery on an app, comprised four main components: 1) holistic assessment of needs using the Integrated Palliative care Outcome Scale-Dementia(IPOS-Dem); 2) IPOSDem scores inform priority setting and goals of care; 3) evidenceinformed clinical decision-support tools automatically linked with identified needs to manage care; 4) priority setting and decision-support tools to facilitate shared decision-making between the person with dementia, carer and practitioners. The app generates automated alerts, linked with resources, and facilitates interprofessional working and communication to manage care. Conclusion(s): Our framework is ready for evaluation in a feasibility and pilot trial. This is the first intervention to link the IPOS-Dem with practical decision support to empower people with dementia, carers and professionals in providing care and supporting users to understand and provide evidence-based palliative dementia care.