Navigating the coronavirus pandemic 2 years on: Experiences of people with dementia from the British IDEAL cohort

Data access statement: IDEAL data were deposited with the UK data archive in April 2020 and will be available to access from April 2023. Details of how the data can be accessed after that date can be found here: https://reshare.ukdataservice.ac.uk/854293 INCLUDE data were deposited with the UK data archive in June 2022 and will be available to access from July 2023. Details of how the data can be accessed after that date can be found here: https://reshare.ukdataservice.ac.uk/855800/ Background and objectives: People with dementia have been affected in unique ways during the COVID-19 pandemic. It is not known whether the impact of the pandemic has changed with time or with the changes in social restrictions. This study explored how experiences of coping with the effects of the pandemic in the UK changed over time. Research design and methods: We conducted semi-structured interviews with people with dementia living in the community in England and Wales who had taken part in a qualitative interview at an earlier stage of the pandemic. We applied framework analysis to identify themes and compared these with interviewees’ previous accounts. Findings: Nine people aged between 51 and 89 years were interviewed; four were female and five had early onset dementia. We identified three themes: 1. Navigating a changing world: Living with coronavirus; 2. A ‘downward spiral’: Managing advancing dementia; and 3. Availability, accessibility, and suitability of support. Findings reflect participants’ ongoing caution about re-emerging from social restrictions to resume valued activities, and how this led to coping behaviours to minimise the impact on wellbeing in the absence of formal support and services. Discussion and implications: Despite easing of restrictions across the UK, the negative impact of the coronavirus pandemic on people with dementia continues. Whilst individuals and services have adapted to some of the challenges, there is now an opportunity to rebuild support networks and services to ensure people with dementia are suitably advised, supported and socially engaged to allow them to live as well as possible. ESRC, NIHR and Alzheimer’s Society