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

Abstract

Background Unpaid carers for people with dementia play a crucial role in society. Emerging evidence suggests the COVID-19 pandemic has negatively impacted on carers. Objective 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 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. Analyses were conducted for the full sample of carers and for the spousal/partner carers only. Results 48.8% of carers identified their healthcare needs were negatively affected during the pandemic. Compared with pre-pandemic data carers were more optimistic and had higher social contact with relatives. There were changes in the methods carers used for contacting relatives and friends. Carers were more lonely and experienced less life satisfaction. Most carers coped very or fairly well during the pandemic. There was little impact on carers’ experience of caregiving, although carers felt trapped by the person’s dementia. There was little difference in the experiences of spousal/partner carers and the full sample. Conclusions To some extent carers were coping with the pandemic but clearly would benefit from support in terms of alleviating feelings of loneliness and increasing life satisfaction. Services need to consider how to improve access to health care under conditions such as those experienced during the pandemic.

A Comparison of Well-Being of Carers of People with Dementia and Their Ability to Manage Before and During the COVID-19 Pandemic: Findings from the IDEAL Study

“…As shown in Table 3, there was no difference between pandemic and prepandemic groups at w1 with an increase in role captivity score between w1 and w2 for the prepandemic group. There was an interaction effect, suggesting that the role captivity score, whilst still increasing, increased to a lesser extent for the pandemic group when compared to the pre-pandemic tent with our previous evidence [29]. Almost all of the studies to date were conducted in the first few months of the pandemic, whereas ours was conducted from 8 months onwards, reflecting a longer-term impact of the pandemic on the carer.…”

“…However, it is noteworthy that a follow up study that included a pre-pandemic control found that whilst positive emotions were still higher for older people, ers believed they were coping well [23]. Our initial 593 study using IDEAL data also reported that carers were 594 generally coping well [29]. burden [1,16,44].…”