Positive Aspects of Dementia Caregiving During the COVID-19 Pandemic

Tulloch, Kristen; McCaul, Trudy; Scott, Theresa

doi:10.1080/07317115.2021.1929630

Cited by 34 publications

(23 citation statements)

References 26 publications

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“…A few studies focussed on positive aspects of providing care during the pandemic. In an Australian study, carers noted that providing care during the pandemic revealed their inner strength as well as their priorities and values having changed, whilst the relationship between them and care recipients deepened (Tulloch et al, 2021). Being close and spending more time with loved ones was also presented in other studies (Rising et al, 2021;Sriram et al, 2021).…”

Section: Impact On Mental Wellbeingmentioning

confidence: 86%

“…Tulloch et al (2021) purposefully only analysed positive experiences however, clearly producing biased ndings. For many carers, engaging with the person with dementia was their only point of face-to-face social contact during the pandemic, generating feelings of loneliness(Hanna et al, 2021;Tam et al, 2021).…”

mentioning

confidence: 99%

“…Tulloch et al, 2021). However, there were limitations in ndings from lower-and middle-income countries (LMICs), with only two studies reporting on India and Brazil (Azavedo et al, 2021;Rajagopalan et al, 2021).…”

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confidence: 99%

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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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Section: Impact On Mental Wellbeingmentioning

confidence: 86%

mentioning

confidence: 99%

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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

View full text Add to dashboard Cite

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“…Existing research suggests caregiver resilience may moderate how caregivers experience the pandemic 48. Specifically, some caregivers experienced positive aspects of caregiving during the COVID-19 pandemic, for example, forging deeper connections between caregivers and care-recipients 29,49…”

Section: Discussionmentioning

confidence: 99%

Family Caregivers of Veterans Experience Clinically Significant Levels of Distress Prepandemic and During Pandemic

et al. 2022

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Background: Of the 26.4 million family caregivers in the United States, nearly 40% report high levels of emotional strain and subjective burden. However, for the 5 million caregivers of Veterans, little is known about the experiences of caregivers of Veterans during the coronavirus disease 2019 (COVID-19) pandemic. Objective: The aim was to examine pandemic-related changes of caregiver well-being outcomes. Research Design, Subjects, and Measures: Using a pre/post design and longitudinal data of individual caregivers captured pre-COVID-19 and during COVID-19, we use multilevel generalized linear mixed models to examine pandemic-related changes to caregiver well-being (n=903). The primary outcome measures include Zarit Subjective Burden, Center for Epidemiologic Studies Short Depression Scale, perceived financial strain, life chaos, and loneliness. Results: During the pandemic, we observe slight improvements for caregivers across well-being measures except for perceived financial strain. Before the pandemic, we observed that caregivers screened positive for clinically significant caregiver burden and probable depression. While we do not observe worsening indicators of caregiver well-being during the COVID-19 pandemic, the average predicted values of indicators of caregiver well-being remain clinically significant for caregiving subjective burden and depression. Conclusions: These findings illuminate pandemic-related impacts of caregivers receiving support through the Veterans Affairs (VA) pre-COVID and during the COVID-19 pandemic while caring for a population of frail, older care-recipients with a high burden of mental illness and other chronic conditions. Considering the long-term impacts of the pandemic to increase morbidity and the expected increased demand for caregivers in an aging population, these consistently high levels of distress despite receiving support highlight the need for interventions and policy reform to systematically support caregivers more broadly.

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“…For example, one study showed that during COVID-19, people with dementia and family carers found new ways to connect which deepened existing relationships. Furthermore, some prioritised self-care and took part in new or creative activities ( Tulloch et al, 2021 ). These conclusions echo findings from this study.…”

Section: Discussionmentioning

confidence: 99%

‘Four walls and a garden’: Exploring the experiences of families affected by dementia during the COVID-19 pandemic

2021

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Introduction When the first national COVID-19 lockdown came into effect in the UK in March 2020, life changed significantly. Some services and social contacts for people with dementia and their families stopped, while others, for example, peer support, moved online. This research explored the experiences of families affected by dementia during the pandemic, specifically those living in the community. Aims In partnership with a community dementia charity, this study sought to gain an understanding of the experiences of people with dementia and family carers during the COVID-19 pandemic and explore the impact and implications of lockdown on people with dementia and family carers. Methods This was a qualitative study that used semi-structured interviews to collect data from people with dementia and family carers. Interviews were conducted online via video call, individually or within caring dyads. Initially, data were coded, analysed and themed inductively. Additionally, social disruption and social division theories were used to deductively identify patterns in the data to enhance understanding. Findings Six distinct themes were identified from the inductive analysis: Routine: ‘busy life before lockdown’; Isolation: ‘ four walls and a garden’; Living with restrictions: ‘ treading on eggshells’; Discovering positives: ‘you are in the same boat’; Easing lockdown: ‘ raring to go’; Heightened uncertainty: ‘ things have changed’. Illustrative examples of symptoms of social disruption and division were identified within the data: frustration, democratic disconnection, fragmentation, polarisation and escalation. Conclusion Experiences of people with dementia and family carers during the pandemic were mixed, resulting in hopes and worries for the future. Social disruption and social division are relevant frameworks for analysing experiences of COVID-19.

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Positive Aspects of Dementia Caregiving During the COVID-19 Pandemic

Cited by 34 publications

References 26 publications

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

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

Family Caregivers of Veterans Experience Clinically Significant Levels of Distress Prepandemic and During Pandemic

‘Four walls and a garden’: Exploring the experiences of families affected by dementia during the COVID-19 pandemic

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