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

Abstract

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.

Social support services for dementia during the COVID‐19 pandemic: A longitudinal survey exploring service adaptations in the United Kingdom

“…Nevertheless, the opportunity to access services remotely following the removal of the public health measures is likely to facilitate access to some service recipients in our survey. Subsequent to 2 years of confinement, people with dementia and unpaid carers may remain cautious and fear engaging in‐person activities 22,39 . In addition, many people experienced a deterioration in their dementia symptoms, 20,22 and accessing services in person may no longer be feasible or desirable.…”

“…Subsequent to 2 years of confinement, people with dementia and unpaid carers may remain cautious and fear engaging in‐person activities. 22 , 39 In addition, many people experienced a deterioration in their dementia symptoms, 20 , 22 and accessing services in person may no longer be feasible or desirable. Thus, the ongoing opportunity to access services remotely, while in‐person services are resuming, is likely to be important for some people with dementia and unpaid carers.…”

“…Subsequent to 2 years of confinement, people with dementia and unpaid carers may remain cautious and fear engaging in-person activities. 22,39 In addition, many people experienced a deterioration in their dementia symptoms, 20,22 and accessing services in person may no longer be feasible or desirable.…”

“…[17][18][19] The coronavirus (COVID-19) pandemic significantly impacted the lives of people with dementia and unpaid carers, 20,21 and is likely to have engendered long-term consequences. 22 Many social support organisations were required to stop in-person service delivery for extensive periods. The diminished opportunities to engage in activities and to socialise with others is thought to have contributed to the overall worsening of dementia symptoms, and general wellbeing of people with dementia and unpaid carers.…”

“…The coronavirus (COVID‐19) pandemic significantly impacted the lives of people with dementia and unpaid carers, 20,21 and is likely to have engendered long‐term consequences 22 . Many social support organisations were required to stop in‐person service delivery for extensive periods.…”