Stakeholder Consultation to Establish Research Priorities for Specialist Dementia Nursing in the United Kingdom.

Abstract

Introduction: In the United Kingdom, there are a growing number of specialist dementia nurses called Admiral Nurses. Admiral Nurses, supported in their professional development and clinical supervision by the charity Dementia UK, work with families affected by dementia using a relationship-centred approach. Given the growing need for this type of support, Dementia UK is committed to research that will expand the evidence base for Admiral Nursing. This article describes a stakeholder consultation to identify research priorities for Admiral Nursing for the next 3 years (2023-2026).

Methods: We adopted a participatory approach using an adapted Nominal Group Technique and priority-setting workshop. All elements of the process were designed in consultation with a steering group comprising a range of stakeholders, including people with dementia, carers, Admiral Nurses, Dementia UK staff and researchers. Stakeholders were identified as those who were likely to be affected by or interested in the emerging research priorities. Nominal groups were held both face-to-face and online. A total of 144 people shared their research priorities. Data generated through each nominal group were thematically analysed and then ranked in order of priority.

Results: Four themes reflecting research priority areas were taken to a priority-setting workshop for consideration. This resulted in three research priorities for Admiral Nursing: (1) people with dementia who live alone and carers who provide support from a distance; (2) people living with young onset and rarer dementia and their families; and (3) people living with multiple health conditions alongside dementia, including mental health problems. Risk, diversity and the effectiveness of Admiral Nursing were strands that ran throughout these themes.

Conclusions: We identified shared research priorities for Admiral Nursing using a rigorous, consensus-driven approach involving key stakeholders. These priorities reflect a desire to ensure that Admiral Nursing services reach the most vulnerable people living with dementia and their families and respond to the widening health and social care inequalities faced by this group.

Patient and public contribution: People with dementia and carers were involved in the design of this process as members of our steering group and through consultation on our initial plans with Dementia UK's Lived Experience Advisory Panel (LEAP). People living with dementia and carers also participated in consultation groups to share their views on research priorities. All stakeholders were invited to share feedback on the themes as part of the analysis and interpretation of the priorities, and a meeting was held with LEAP to discuss the emerging priorities.