key: cord-0747912-qjmqlcoj authors: Quinn, Catherine; Gamble, Laura D.; Parker, Sophie; Martyr, Anthony; Collins, Rachel; Victor, Christina; Dawson, Eleanor; Hunt, Anna; Pentecost, Claire; Allan, Louise; Clare, Linda title: Impact of COVID‐19 on carers of people with dementia in the community: Findings from the British IDEAL cohort date: 2022-04-08 journal: Int J Geriatr Psychiatry DOI: 10.1002/gps.5708 sha: 22569b6a20cfcf8fc8f18ebaab94e4c96463cf7a doc_id: 747912 cord_uid: qjmqlcoj 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. and the largest increase in non-COVID-19 deaths was in people with dementia. 10 Within the UK, periods of national and local lockdowns and periods of restrictions meant that carers had fewer opportunities for respite and experienced reduced access to health and social care. [10] [11] [12] There is emerging evidence of the impact of the pandemic on carers. Qualitative studies have highlighted that for carers, the pandemic exacerbated an already difficult situation having a negative impact on well-being. 11, [13] [14] [15] [16] Given the unprecedented situation and the speed in which data were collected, some quantitative studies just focused on reporting data collected during the pandemic; for example, rates of anxiety, depression, and stress in carers during periods of lockdown/confinement. [17] [18] [19] Although these data provide a helpful description of carers' well-being, without details of the pre-COVID context, these studies cannot explore the wider impact of the pandemic and resulting restrictions on carers. Retrospective accounts, where carers compare their current situation to a time before the pandemic started [20] [21] [22] [23] [24] [25] [26] [27] [28] [29] [30] [31] [32] suggest that some carers described increased care needs of the person with dementia, 25, 27, 29 selfreported stress, 21, 24 burden, 22, 33 loneliness, 23 anxiety and depression, 23, 26, 32 although a worsening of well-being was not universal for all carers taking part in these studies. Whilst retrospective accounts rely on carers accurately recalling the situation pre-pandemic, other studies have compared data collected at different timepoints during the pandemic. Most studies collected data during the pandemic outbreak, typically comparing data pre lockdown/confinement and during lockdown/confinement. [34] [35] [36] [37] In terms of pre-pandemic, one study states baseline data was collected pre-pandemic but it's not clear when. 38 Only one study clearly states baseline data was collected pre-pandemic (4 months before first infected case). 39 The findings from all these studies indicate increases in carer stress, 35 burden, 34, 39 and worsening of well-being 39 during lockdown. Although, other studies reported no changes in carer health-related quality of life 36 or distress. 38 A study of caregivers of people with subcortical vascular data that collected data over three timepoints found that although anxiety, depression, and stress increased when assessed at the end of a lockdown period, these levels had started to decrease 2 months later. 37 These findings suggest that things may change over time as carers adjust to the situation. Whilst these studies start to provide an important picture of changes in carers' circumstances, due to the nature of data collection, these studies typically relied on audits of health records and samples of convenience. To date there is no study of carers of people with dementia that has compared the current impact of the pandemic with equivalent benchmarked pre-pandemic information from carers. As identified most studies collected data during the pandemic. By using equivalent pre-pandemic information this would provide important insights into changes experienced by carers during the pandemic. The aim of this study was to explore the impact of the pandemic on carers of people with dementia residing in the community who were already participating in the Improving the experience of Dementia and Enhancing Active Life (IDEAL) cohort, 40,41 thus allowing comparison of data collected during the second wave of the pandemic with pre-pandemic data. Participants were eligible to take part in INCLUDE if they were living in England or Wales and had previously participated in IDEAL. Carers could participate if the person with dementia was not taking part. The structured interview drew on the domains of living well explored previously, 41 Data were collected by three trained interviewers who were graduate or masters level psychologists. Potential participants were contacted either through letter, telephone, or email. During this initial contact, interviewers provided information about the study and answered questions. A follow-up call was arranged to take informed consent. Carers could either be interviewed over the telephone, video conferencing, or self-complete the questionnaire online. Questions on experiences during the pandemic were analysed descriptively. The other items were compared against IDEAL T3 data. Analyses were conducted for the full sample of carers. Since most of the carers were spouses/partners, we explored this specific group to determine if there were any differences in responses. A flowchart of the recruitment process and reasons for withdrawal is provided in Figure 1 . Out of the 584 eligible carers, researchers were able to contact 496. Of these 288 agreed to participate; 46 carers were excluded from the current study as the person with dementia was in residential care yielding a sample of 242 carers. Participants are described in Table 1 Reponses are provided in Table 2 and Supplementary Table 2 For the full sample (both spouse/partners and family/friends) a small percentage had contracted COVID-19, which was lower than population norms (4.1% vs. 6.1%). In total 21.1% reported knowing someone close to them who had contracted COVID-19. The pandemic impacted on carers' health with 48.8% reporting their healthcare needs were QUINN ET AL. affected. This related to cancelled or postponed hospital appointments, operations, and medical reviews. There were difficulties getting appointments with general practitioners, opticians, and dentists, particularly face-to-face appointments. Only 24% avoided seeking help for health issues, primarily due to not wanting to burden services, feeling the issue was not urgent, fear of contracting COVID-19 in medical settings, and dislike of telephone appointments. Analyses on spouse/ partner carers only yielded similar findings. Responses are provided in Table 3 and Supplementary Table 3 . For the full sample, there was a significant increase in the number of relatives the carer was in contact with at least monthly compared to IDEAL T3 (6.2 vs. 5.3) which was also supported by the sensitivity analyses (Supplementary Table 6 ). When asked, 45.9% of carers said this contact had changed since the pandemic. Responses indicate changes related to less face-to-face contact and an increased use of telephone/virtual contact. Although not significant, carers reported more satisfaction with support from relatives (77.2% vs. 68.8%). The number of friends in contact at least monthly was not significantly different, though 56.2% of carers said this had changed since the pandemic for similar reasons as above. The increase in satisfaction with support from friends (73.6% vs. 62.6%) was not significant. Similar findings were observed for spouse/partner carers only. For the full sample, significantly more carers reported feeling lonely than at IDEAL T3 (54.5% vs. 28.7%); they also reported slightly less life satisfaction (6.1 vs. 6.6), see Table 4 and Supplementary Table 4 . These findings were supported by the sensitivity analyses (Supplementary Table 6 ). Carers were more optimistic, expecting more good things to happen than bad (56.7% vs. 53.4%), and this was supported by the paired samples tests (Supplementary Compared with IDEAL T3 more carers felt trapped by the person's dementia (42.2% vs. 37.1%). However, this finding was not supported in the sensitivity analyses (Supplementary Table 6 ). In terms of support available, carers were more likely to identify someone to step in to help generally (50% vs. 35 .4%) and if the carer needed a break (40.9% vs. 28.2%). These findings were supported by the sensitivity analyses. Findings were similar when looking at spouse/ partner carers only, see Table 5 and Supplementary Table 5 Benchmark for comparison where applicable b All carers a n = 242 Spouse/partners only a n = 208 Benchmark data are shown in brackets after the equivalent data for the current sample. 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The Fog of Support: An Inquiry into the Provision of Respite Care and Carers Assessments for People Affected by Dementia We would like to acknowledge the support of the following research networks: NIHR Dementias and Neurodegeneration Specialty Additional supporting information can be found online in the Supporting Information section at the end of this article.