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.

BACKGROUND: Social restriction measures imposed to curb the spread of COVID-19 in the United Kingdom impacted on carers of people with dementia, limiting access to support services and increasing perceived burden of caring. Few studies have compared data collected both during and before the pandemic to examine the effect of these changes. OBJECTIVE: To explore whether the COVID-19 pandemic affected the well-being of carers of people with dementia living in the community, and their ability to cope with their caring responsibilities. METHODS: Analysis was conducted on two groups of carers who were enrolled in the IDEAL programme; the 'pre-pandemic group' (n = 312), assessed at two time points prior to the pandemic, and the 'pandemic group', assessed prior to and several months into the pandemic (n = 156). For the pre-pandemic group, carers were matched 2:1 to carers in the pandemic group on certain characteristics. Differences in change over time between the two groups on self-reported well-being, quality of life, coping, perceived competence, and role captivity, were investigated using mixed effect modelling. RESULTS: Compared to the pre-pandemic group, those in the pandemic group appeared to cope better and had more stable self-rated competency and role captivity. They did not differ in terms of well-being or quality of life. CONCLUSIONS: Despite reports of negative impacts on carers early in the pandemic, the findings suggest the pandemic had little negative longer-term impact on carers of people with dementia, and in fact they appeared to have a more positive attitude towards coping several months into the pandemic.

Minimal Impact of COVID-19 Pandemic on the Mental Health and Wellbeing of People Living With Dementia: Analysis of Matched Longitudinal Data From the IDEAL Study.

Objective: Research suggests a decline in the mental health and wellbeing of people with dementia (PwD) during the COVID-19 pandemic; however few studies have compared data collected pre-pandemic and during the pandemic. Moreover, none have compared this change with what would be expected due to dementia progression. We explored whether PwD experienced changes in mental health and wellbeing by comparing pre-pandemic and pandemic data, and drew comparisons with another group of PwD questioned on two occasions prior to the pandemic. Methods: Community-dwelling PwD enrolled in the IDEAL programme were split into two groups matched for age group, sex, dementia diagnosis, and time since diagnosis. Although each group was assessed twice, one was assessed prior to and during the pandemic (pandemic group; n = 115) whereas the other was assessed prior to the pandemic (pre-pandemic group; n = 230). PwD completed measures of mood, sense of self, wellbeing, optimism, quality of life, and life satisfaction. Results: Compared to the pre-pandemic group, the pandemic group were less likely to report mood problems, or be pessimistic, but more likely to become dissatisfied with their lives. There were no changes in continuity in sense of self, wellbeing, and quality of life. Discussion: Results suggest the pandemic had little effect on the mental health and wellbeing of PwD, with any changes observed likely to be consistent with expected rates of decline due to dementia. Although personal accounts attest to the challenges experienced, PwD appear to have been resilient to the impact of lockdown and social restrictions during the pandemic.

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

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.

Impact of COVID-19 on 'Living Well' with Mild-to-Moderate Dementia in the Community: Findings from the IDEAL Cohort.

BACKGROUND: Negative impacts of the COVID-19 pandemic on people with dementia have been widely-documented, but most studies have relied on carer reports and few have compared responses to information collected before the pandemic. OBJECTIVE: We aimed to explore the impact of the pandemic on community-dwelling individuals with mild-to-moderate dementia and compare responses with pre-pandemic data. METHODS: During the second wave of the pandemic, we conducted structured telephone interviews with 173 people with dementia and 242 carers acting as informants, all of whom had previously participated in the IDEAL cohort. Where possible, we benchmarked responses against pre-pandemic data. RESULTS: Significant perceived negative impacts were identified in cognitive and functional skills and ability to engage in self-care and manage everyday activities, along with increased levels of loneliness and discontinuity in sense of self and a decline in perceived capability to 'live well'. Compared to pre-pandemic data, there were lower levels of pain, depression, and anxiety, higher levels of optimism, and better satisfaction with family support. There was little impact on physical health, mood, social connections and relationships, or perceptions of neighborhood characteristics. CONCLUSION: Efforts to mitigate negative impacts of pandemic-related restrictions and restore quality of life could focus on reablement to address the effects on participation in everyday activities, creating opportunities for social contact to reduce loneliness, and personalized planning to reconnect people with their pre-COVID selves. Such efforts may build on the resilience demonstrated by people with dementia and carers in coping with the pandemic.

Epidemiology and clinical features of emergency department patients with suspected COVID-19: Insights from Australia's 'second wave' (COVED-4).

OBJECTIVE: The aim of the present study was to describe the epidemiology and clinical features of patients presenting to the ED with suspected and confirmed COVID-19 during Australia's 'second wave'. METHODS: The COVID-19 ED (COVED) Project is an ongoing prospective cohort study in Australian EDs. This analysis presents data from 12 sites across four Australian states for the period from 1 July to 31 August 2020. All adult patients who met the criteria for 'suspected COVID-19' and underwent testing for SARS-CoV-2 in the ED were eligible for inclusion. Study outcomes included a positive SARS-CoV-2 test result, mechanical ventilation and in-hospital mortality. RESULTS: There were 106 136 presentations to the participating EDs and 12 055 (11.4%; 95% confidence interval [CI] 11.2-11.6) underwent testing for SARS-CoV-2. Of these, 255 (2%) patients returned a positive result. Among positive cases, 13 (5%) received mechanical ventilation during their hospital admission compared to 122 (2%) of the SARS-CoV-2 negative patients (odds ratio 2.7; 95% CI 1.5-4.9, P = 0.001). Nineteen (7%) SARS-CoV-2 positive patients died in hospital compared to 212 (3%) of the SARS-CoV-2 negative patients (odds ratio 2.3; 95% CI 1.4-3.7, P = 0.001). Strong clinical predictors of the SARS-CoV-2 test result included self-reported fever, sore throat, bilateral infiltrates on chest X-ray, and absence of a leucocytosis on first ED blood tests (P < 0.05). CONCLUSIONS: In this prospective multi-site study during Australia's 'second wave', a substantial proportion of ED presentations required SARS-CoV-2 testing and isolation. Presence of SARS-CoV-2 on nasopharyngeal swab was associated with an increase in the odds of death and mechanical ventilation in hospital.