A mixed methods feasibility evaluation of a shared decision-making intervention for community dwelling adults living with dementia, family carers and practitioners
6 affiliations
- 1Cicely Saunders Institute of Palliative Care, Policy and Rehabilitation, King’s College London, London, UK
- 2National Ageing Research Institute Inc, Parkville, Victoria, Australia
- 3Centre for Psychiatry and Mental Health, Queen Mary University of London Wolfson Institute of Population Health, London, UK
- 4Academic Centre for Healthy Ageing, Whipps Cross Hospital, Barts Health NHS Trust, London, UK
- 5East London NHS Foundation Trust, London, UK
- 6Sussex Community NHS Foundation Trust, Brighton, UK
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.
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BibTeX
@article{aworinde2026mixed,
title = {{A mixed methods feasibility evaluation of a shared decision-making intervention for community dwelling adults living with dementia, family carers and practitioners}},
author = {Jesutofunmi Aworinde and Clare Ellis-Smith and Nathan Davies and Elizabeth Sampson and Catherine Evans},
journal = {BMJ Open},
year = {2026},
month = oct,
doi = {10.1136/bmjopen-2026-121790},
url = {https://bmjopen.bmj.com/lookup/doi/10.1136/bmjopen-2026-121790},
note = {CC BY 4.0},
}
RIS
TY - JOUR
TI - A mixed methods feasibility evaluation of a shared decision-making intervention for community dwelling adults living with dementia, family carers and practitioners
AU - Jesutofunmi Aworinde
AU - Clare Ellis-Smith
AU - Nathan Davies
AU - Elizabeth Sampson
AU - Catherine Evans
PY - 2026
DA - 2026/10/28
JO - BMJ Open
DO - 10.1136/bmjopen-2026-121790
UR - https://bmjopen.bmj.com/lookup/doi/10.1136/bmjopen-2026-121790
AB - 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.
SN - 2044-6055
SN - 2044-6055
ER -