Work

A mixed methods feasibility evaluation of a shared decision-making intervention for community dwelling adults living with dementia, family carers and practitioners

Year: 2026

Type: article

Abstract: Objectives To evaluate the feasibility of a shared decision-making intervention for people living with dementia at home, their family carers and healthcare practitioners. Design A mixed-methods feasibility study and process evaluation using a multiple case study design at the individual level of persons with dementia, family carers and practitioners. Setting The UK, National Health Service (NHS) community care (people living with dementia at home). Participants People living with dementia at home, their family carers and NHS community healthcare practitioners who provide care to people living with dementia. Intervention The intervention is the EMpowering Better End of life Dementia Care (EMBED-Care) Framework which we previously co-designed to enhance shared decision-making. The intervention comprises a holistic person-centred outcome measure (PCOM) known as the Integrated Palliative care Outcome Scale for Dementia (IPOS-Dem), linked with clinical decision support tools (evidence-based, simple flow diagrams of options to support decision making), priorities of care list (available in paper and digital formats), resources and training. Results The study was made up of three cases, comprising a person living with dementia at home and/or their family carer and a practitioner. The EMBED-Care Framework has the potential to strengthen shared decision-making. Across three cases, joint use of IPOS-Dem indicated the potential to support deeper discussion of care and treatment and understanding the needs of people with dementia. The clinical decision support tools helped structure conversations about care and treatment options, prompting exploration of preferences with the person and/or family carer. The ‘priorities of care list’ was rarely used, indicating need for refinement and better integration into routine practice. Comprehensive staff training with ongoing and visible leadership support were identified as key factors for using the intervention. Conclusions Using a holistic, PCOM alongside clinical decision support tools can strengthen shared decision-making. Together, they support collaboration between the person with dementia, family carers and practitioners, focusing discussion on needs and what matters most to the person and family. Future research will further explore implementation, undertake a pilot study to test the methods for a definitive trial and recruit a more diverse participant group.

Source: BMJ Open

DOI: 10.1136/bmjopen-2026-121790

Authors: Jesutofunmi Aworinde, Clare Ellis-Smith, Nathan Davies, Elizabeth Sampson, Catherine Evans