Long-term impact of the COVID-19 pandemic on the quality of life of people with dementia and their family carers.

Introduction: Few studies have longitudinally mapped Quality of Life (QoL) trajectories of newly diagnosed people with dementia and their carers, particularly during COVID-19. Methods: In a UK cohort study, 261 newly diagnosed people with dementia and 206 family carers were assessed prior to the pandemic (July 2019-March 2020), followed up after the first lockdown (July-October 2020) and then again a year and two years later. Latent growth curve modeling examined the level and change of QoL over the four time-points using dementia-specific QoL measures (DEMQOL and C-DEMQOL). Results: Despite variations in individual change scores, our results suggest that generally people with dementia maintained their QoL during the pandemic, and experienced some increase towards the end of the period. This contrasted with carers who reported a general deterioration in their QoL over the same period. ‘Confidence in future’ and ‘Feeling supported’ were the only carer QoL subscales to show some recovery post-pandemic. Discussion: It is positive that even during a period of global disruption, decline in QoL is not inevitable following the onset of dementia. However, it is of concern that carer QoL declined during this same period even after COVID-19 restrictions had been lifted. Carers play an invaluable role in the lives of people with dementia and wider society, and our findings suggest that, post-pandemic, they may require greater support to maintain their QoL.