No one left to cope alone (NOLA): protocol for the development of a postdiagnostic intervention to support people newly diagnosed with dementia

Abstract

Introduction Receiving a diagnosis of dementia is a seminal moment in many people’s lives. It can be associated with anger and grief for both the person with dementia and their network. Despite this, there is no provision for emotional support to help people affected by dementia manage the impact of receiving that diagnosis. As such, a postdiagnostic intervention to help people process and adjust to a diagnosis of dementia is needed. This protocol describes the initial work to be undertaken as part of a Programme Development Grant. The aims are to synthesise evidence for existing interventions, understand the implementation context and establish an advisory board.Methods and analyses Phase 1 will consist of two systematic reviews to synthesise research evidence for existing interventions in related areas. Phase 2 will consist of two qualitative research studies. Study 1 is a UK-wide qualitative survey to understand the current lived experience of receiving a diagnosis and postdiagnostic support. Study 2 is a local qualitative study in which three groups of stakeholders will be asked about the perceived barriers and facilitators to implementing a postdiagnostic intervention in Natuional Health Services (NHS). In Phase 3, an advisory group of people living with dementia, carers and other professionals will be established to provide advice and feedback and contribute to the codevelopment of the initial intervention.Ethics and dissemination Health Research Authority, 15 July 2024. All data will be held in accordance with North East London NHS regulations, who act as sponsor of this development work. We will engage with policy professionals in Study 2 (Phase 2) and through this network disseminate our findings to facilitate policy change. The use of coproduction to ensure people with dementias voices are heard throughout this work will result in impact in health and well-being.