Title: Sharing the diagnosis of dementia in the post-Covid clinic: patient and practitioner perspectives
Funder: Economic and Social Research Council

Abstract: The aim of this research is to understand experiences of delivering and receiving a dementia diagnosis during COVID-19. Three aspects of this experience will be explored in both practitioners and patients: - Emotional impact - Practical impact - Ethical considerations Exploring these aspects of diagnosis will inform the development of guidelines to improve diagnosis delivery and post-diagnostic support across the UK. 1. Practical impact - How possible it is fully to assess someone remotely? Areas of difficulty include cognitive testing, excluding depression, etc. as well as an inability to assess an individual's reactions during the interview leading to uncertainty how to present information and whether it has been fully understood. 2. Emotional impact - For example, there may be a negative impact of being told that you have dementia over the telephone, especially if normal supports (family, friends, etc.) are not in place during COVID. Thus, the impact on the individual is the main focus of this project. 3. Ethical considerations - Is it ethical to deliver a dementia diagnosis remotely knowing that the normal supports are not in place? How are the costs and benefits of this weighed up? PROPOSED TIMELINE Months 1-2: Obtain ethical approval, establish PPI group, and recruit participants Months 3-5: Conduct interviews and regular monthly PPI meetings to reflect on emergent findings Months 6-7: Analyse interview in collaboration with PPI group Months 8-9: Prepare and promote online forum Month 10: Host Online Forum Months 11-12: Produce guidelines and policy brief

Lay abstract: With the COVID-19 pandemic, most memory clinics switched to remote consultations (by telephone or video-call) to continue to meet the needs of patients while minimising the risk of anyone becoming exposed to the virus. However, there is a significant lack of clarity around how a dementia diagnosis should be delivered remotely and how the person with dementia experiences this process. The aim of this research is to understand experiences of delivering and receiving a dementia diagnosis during COVID-19 through the exploration of emotional impact, practical impact, and ethical considerations. This project will be co-produced by the researchers and a small group of people living with dementia and their care partners (up to eight people). This group will be consulted at each stage of the research. About 30 people who have recently been patients at memory clinics since services shifted to remote working (in March 2020) will be interviewed as well as a similar number of professionals who have been delivering diagnoses. These interviews will be analysed with the group mentioned above to identify recurring themes. These themes will then be used to inform an online national forum. Findings from both this online discussion and the interviews will be used to develop a briefing document for policymakers and a guideline for clinicians about how best to deliver a remote dementia diagnosis. Additional outputs will include podcasts to engage the public and academic papers in open access, peer-reviewed journals.

Research activity codes: 7.1 INDIVIDUAL CARE NEEDS;7.3 MANAGEMENT AND DECISION MAKING
Health categories: NEUROLOGICAL;INFECTION