Caring for Relatives with Dementia in Times of COVID-19: Impact on Caregivers and Care-recipients

Losada, Andrés; Vara‐García, Carlos; Romero‐Moreno, Rosa; Barrera‐Caballero, Samara; Pedroso-Chaparro, María Del Sequeros; Jiménez‐Gonzalo, Lucía; Fernandes‐Pires, Jose; Cabrera, Isabel; Gallego-Alberto, Laura; Huertas-Domingo, Cristina; Mérida-Herrera, Laura; Olazarán-Rodríguez, J; Márquez‐González, María

doi:10.1080/07317115.2021.1928356

Cited by 25 publications

(23 citation statements)

References 37 publications

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“…6,46 Certainly, just over half of the carers identi ed that the pandemic had some positives and most carers reported coping well during the pandemic. Although studies have reported carers struggling to cope during the pandemic 13 others have reported carers coping well 27 utilising active and passive coping strategies. 19 Our ndings may re ect carers' adaptation to the situation.…”

Section: Discussionmentioning

confidence: 99%

“…[18][19][20] 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 [21][22][23][24][25][26][27][28][29][30][31][32][33] suggest that some carers described increased care needs of the person with dementia, 26,28,30 self-reported stress, 22,25 burden, 23,34 loneliness, 24 anxiety and depression, 24,27,33 although a worsening of well-being was not universal for all carers taking part in these studies.…”

Section: Introductionmentioning

confidence: 99%

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

Quinn

Gamble

Parker

et al. 2022

Preprint

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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.

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Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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

Quinn

Gamble

Parker

et al. 2022

Preprint

View full text Add to dashboard Cite

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“…The majority of studies (n=25) were quantitative, including retrospective surveys enquiring about changes since the pandemic (Carpinelli-Mazzo et al, 2021; Pongan et al, 2021) and assessments of mental health and carer burden (i.e., Hwang et al, 2021;Losada et al, 2021). Qualitative studies (n=8) reported on remote interviews with unpaid carers about their experiences of providing care during the pandemic and their concerns (i.e., Rising et [Figure 1; Tables 1-3] Di culties with accessing care homes due to the increased care needs of the care-recipient was reported in one study (Giebel et al, 2021c).…”

Section: Resultsmentioning

confidence: 99%

The early impacts of COVID-19 on unpaid carers of people living with dementia: Part II of a mixed-methods systematic review

Giebel

Talbot

Wharton³

et al. 2022

Preprint

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Background With a lack of existing comprehensive reviews, the aim of this mixed-methods systematic review was to synthesise the evidence on the early impacts of the pandemic on unpaid dementia carers across the globe. Methods This review was registered on PROSPERO [CDR42021248050]. PubMed, CINAHL, Embase, Scopus and Web of Science were searched from 2020 to July 2021. Studies were included if they reported on the different impacts of the pandemic on unpaid dementia carers aged 18+, with papers published in English, German, Polish, or Spanish. A number of research team members were involved in the selection of studies following PRISMA guidance. Results Thirty-six studies (43 papers) from 18 countries reported on the early impact of the pandemic on unpaid dementia carers. Impacts were noted on accessing care and support; carer burden; and well-being. Studies found that carers had limited access to care and support services, increased workload, enhanced feelings of isolation, and reduced wellbeing. All these negatives impacts were interlinked, with reductions in access to care and support increased carer’s unpaid caring tasks, removing any opportunities for temporary respite, and thus increasing carer burden and reducing mental well-being in many. Conclusions The needs of unpaid dementia carers appear to have increased during the pandemic, without adequate support provided. Policy initiatives need to enable better mental health support and formal care provision for unpaid carers and their relatives with dementia, whilst future research needs to explore the long-term implications of carer needs in light of care home restrictions and care delivery.

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“… 5 , 47 Certainly, just over half of the carers identified that the pandemic had some positives and most carers reported coping well during the pandemic. Although studies have reported carers struggling to cope during the pandemic 12 others have reported carers coping well 26 utilising active and passive coping strategies. 18 Our findings may reflect carers' adaptation to the situation.…”

Section: Discussionmentioning

confidence: 99%

“… 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 self‐reported 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.…”

mentioning

confidence: 99%

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

Quinn

Gamble

Parker

et al. 2022

Int J Geriat Psychiatry

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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.

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Caring for Relatives with Dementia in Times of COVID-19: Impact on Caregivers and Care-recipients

Cited by 25 publications

References 37 publications

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

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

The early impacts of COVID-19 on unpaid carers of people living with dementia: Part II of a mixed-methods systematic review

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

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