Impact of COVID‐19 on carers of people with dementia in the community: Findings from the British IDEAL cohort

Abstract

Objective Unpaid carers for people with dementia play a crucial role in society. Emerging evidence suggests the COVID‐19 pandemic has negatively impacted on carers. This study sought to explore the impact of the COVID‐19 pandemic on carers for community‐dwelling people with dementia and compare responses with pre‐pandemic data. Methods Data were collected between September 2020 and April 2021 in England and Wales. Carers were identified from the Improving the experience of Dementia and Enhancing Active Life (IDEAL) cohort and data were collected either through the telephone, video conferencing, or an online questionnaire. Responses from 242 carers were compared against benchmark data from the IDEAL cohort collected pre‐pandemic. Analyses were conducted for the full sample of carers and spousal/partner carers only. Results In total 48.8% of carers thought their healthcare needs were negatively affected during the pandemic. Compared with pre‐pandemic data carers were more lonely and experienced less life satisfaction. There was little impact on carers' experience of caregiving, although carers felt trapped in their caregiving role. Carers were more optimistic and had higher social contact with relatives. There were changes in the methods carers used for contacting relatives and friends. Most carers coped very or fairly well during the pandemic. There was little difference in the experiences of spousal/partner carers and the full sample. Conclusions After a long period of providing care under pandemic conditions carers require additional support. This support needs to be focused on alleviating feelings of loneliness and increasing life satisfaction. Services need to consider how to improve access to health care, particularly resuming face‐to‐face appointments.

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

“…This qualitative study forms part of the INCLUDE project (Identifying and mitigating the individual and dyadic impact of COVID-19 and life under physical distancing on people with dementia and caregivers; Clare et al, 2022 ; Quinn et al, 2022 ), a component of the British IDEAL cohort study ( Clare et al, 2014 ; Silarova et al, 2018 ) intended to explore the experiences of people with dementia and their caregivers in England and Wales during the coronavirus pandemic using both quantitative and qualitative methods. INCLUDE built upon in-depth interviews conducted between May and July 2020 as part of the IDEAL COVID-19 Dementia Initiative (IDEAL-CDI)( O'Rourke et al., 2021 ) and was developed in collaboration with the IDEAL public and patient involvement group, ALWAYs.…”

“…For a description of the IDEAL, IDEAL CDI and INCLUDE studies see Table 1 . INCLUDE participants completed structured telephone or online interviews between September 2020 and April 2021 ( Clare et al, 2022 ; Quinn et al, 2022 ), and a subset of participants additionally engaged in qualitative semi-structured interviews conducted either before (November to December 2020) ( Pentecost et al, 2022 ) or after (January to April 2021) ( Stapley et al, 2022 ) the start of the vaccination programme in England and Wales.…”

“…For a description of the IDEAL, IDEAL CDI and INCLUDE studies see Table 1. INCLUDE participants completed structured telephone or online interviews between September 2020 and April 2021 (Clare et al, 2022;Quinn et al, 2022), and a subset of participants additionally engaged in qualitative semistructured interviews conducted either before (November to December 2020) (Pentecost et al, 2022) or after (January to April 2021) (Stapley et al, 2022) the start of the vaccination programme in England and Wales. Here, we report findings from a further round of qualitative semi-structured interviews with people with dementia conducted between December 13, 2021, and January 25, 2022, after the programme to deliver second vaccinations was completed and during the emergence of the new Omicron variant in England and Wales.…”

Editorial: Innovations in dementia and ageing care

“…People with dementia have been impacted by diminished face-to-face access to health, care and community services (2)(3)(4). Supporters of people with dementia were also significantly affected (5,6). Many services have still not re-opened, funding revenues for the voluntary sector have been affected and there has been a shift to delivering services remotely either over the telephone or online, e.g., telemedicine or telehealth (7).…”

Caregiving for Dementia Patients during the Coronavirus Pandemic

“…Furthermore, during the pandemic, the carers faced feelings of loneliness and social isolation, all of this contributing to chronic stress, feelings of weariness, an increased incidence of cardiovascular disease, lower immunity, and physical and financial issues [ 11 , 12 , 13 , 14 , 15 ].…”