Impact of COVID-19 related social support service closures on people with dementia and unpaid carers: a qualitative study

Giebel, Clarissa; Cannon, Jacqueline; Hanna, Kerry; Butchard, Sarah; Eley, Ruth; Gaughan, Anna; Komuravelli, Aravind; Shenton, Justine; Callaghan, Steve; Tetlow, Hilary; Limbert, Stan; Whittington, Rosie; Rogers, Carol; Rajagopal, Manoj; Ward, Kym; Shaw, Lisa; Corcoran, Rhiannon; Bennett, Kate; Gabbay, Mark

doi:10.1080/13607863.2020.1822292

Cited by 231 publications

(321 citation statements)

References 30 publications

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“…Carers UK 2020). A qualitative study on informal carers for people with dementia in the UK confirmed that fear of contagion by professional carers led informal caregivers to increase care hours as formal care was discontinued (Giebel et al 2020). In countries with a high reliance on privately paid live-in domestic assistants -who are mainly migrant carers, such as in Italy, Germany or Austria -the closure of borders added to the shortage of care alternatives (Schmidt et al 2020;Lorenz-Dant 2020).…”

Section: Impact Of Covid On Informal Carementioning

confidence: 99%

Care in times of COVID-19: The impact of the pandemic on informal caregiving in Austria

Rodrigues¹,

Simmons²,

Schmidt³

et al. 2020

Preprint

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Much attention has been paid to the care workforce and care home residents during the COVID-19 crisis, whereas the impact on informal caregivers has remained speculative. In Austria, like in other European countries, informal care is carried out overwhelmingly by (non-cohabiting) relatives. Limited care services available during the crisis, social-distancing, economic uncertainty and competing care needs within households may have changed the profile of informal caregiving and/or increased the psychological strain experienced by caregivers. Focusing on Austria, this study aims to empirically analyse the following research questions: how has the pandemic affected the incidence and intensity of informal caregiving? How has the psychological wellbeing during the first wave of the pandemic compared across different groups of informal caregivers, depending on their gender and parental status? We use a novel representative survey carried out in Austria after the implementation of lockdown measures (June 2020, N=2000). Bivariate and multivariate statistical analysis is applied to a set of survey items dedicated to respondent’s informal caregiving before and after the start of the pandemic and psychological wellbeing. Findings suggest a tightening of care networks, with new carers likely to have stepped in to provide low intensity care to relatively autonomous people. Overall, both prevalence and intensity of informal care did not change significantly (compared to pre-crisis levels). Caregiving was associated with poor psychological outcomes, especially among those without children. Findings are discussed in relation to the emerging literature on the impact of the pandemic and to the policy measures implemented in Austria.

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Section: Impact Of Covid On Informal Carementioning

confidence: 99%

Care in times of COVID-19: The impact of the pandemic on informal caregiving in Austria

Rodrigues¹,

Simmons²,

Schmidt³

et al. 2020

Preprint

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“…With additional social distancing for the general population, and use of personal protective equipment (PPE) for the health and social care taskforce in place, these measures significantly impact the social support services that PLWD, carers and older adults could receive. Recent qualitative evidence has highlighted how PLWD and unpaid carers have faced a sudden crisis in terms of accessing social support services since the pandemic, 9 and have faced difficult decisions whether to continue or discontinue paid carers entering the home of the PLWD, for fear of potential virus transmission. 10 While these qualitative accounts provide rich information on the experiences of having accessed (or failed to access) social support services during the pandemic, there appears to be no empirical evidence to date quantifying those experiences and linking these with mental well-being.…”

Section: Introductionmentioning

confidence: 99%

COVID-19-related social support service closures and mental well-being in older adults and those affected by dementia: a UK longitudinal survey

et al. 2021

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BackgroundThe COVID-19 pandemic has had a major impact on delivery of social support services. This might be expected to particularly affect older adults and people living with dementia (PLWD), and to reduce their well-being.AimsTo explore how social support service use by older adults, carers and PLWD, and their mental well-being changed over the first 3 months since the pandemic outbreak.MethodsUnpaid dementia carers, PLWD and older adults took part in a longitudinal online or telephone survey collected between April and May 2020, and at two subsequent timepoints 6 and 12 weeks after baseline. Participants were asked about their social support service usage in a typical week prior to the pandemic (at baseline), and in the past week at each of the three timepoints. They also completed measures of levels of depression, anxiety and mental well-being.Results377 participants had complete data at all three timepoints. Social support service usage dropped shortly after lockdown measures were imposed at timepoint 1 (T1), to then increase again by T3. The access to paid care was least affected by COVID-19. Cases of anxiety dropped significantly across the study period, while cases of depression rose. Well-being increased significantly for older adults and PLWD from T1 to T3.ConclusionsAccess to social support services has been significantly affected by the pandemic, which is starting to recover slowly. With mental well-being differently affected across groups, support needs to be put in place to maintain better well-being across those vulnerable groups during the ongoing pandemic.

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“…It is important to acknowledge the changing landscape of care provision that the coronavirus disease 2019 (COVID-19) pandemic and associated public health measures have had on the lives of people with dementia and carers. Since March 2020, the U.K. experienced a nationwide lockdown for several months, with vulnerable and older adults asked to shield until early August [ 17 ]. Although evidence is still very sparse, emerging evidence from the U.K. showcases how public health measures have led to a lack of access to social support services, which led to faster deteriorations in dementia and increased carer burden [ 17 ].…”

Section: Introductionmentioning

confidence: 99%

“…Since March 2020, the U.K. experienced a nationwide lockdown for several months, with vulnerable and older adults asked to shield until early August [ 17 ]. Although evidence is still very sparse, emerging evidence from the U.K. showcases how public health measures have led to a lack of access to social support services, which led to faster deteriorations in dementia and increased carer burden [ 17 ]. This is corroborated by international evidence [ 18 ].…”

Section: Introductionmentioning

confidence: 99%

Health Inequities in the Care Pathways for People Living with Young- and Late-Onset Dementia: From Pre-COVID-19 to Early Pandemic

Giebel

Sutcliffe

Darlington‐Pollock

et al. 2021

IJERPH

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Background: Little is known about how people with dementia and/or their family carers access health and social care services after a diagnosis. The aim of this study was to explore potential inequalities in care pathways for people with young-onset and late on-set dementia (YOD/LOD), including their family carers, with coronavirus disease 2019 (COVID-19) occurring throughout the course of the study and enabling a comparison between pre-pandemic and COVID-19 times. Methods: People with YOD and LOD with their family carers were recruited via local support groups in the North West Coast region of England. Semi-structured interviews explored the experiences of people with YOD and LOD and family carers on their access to both health and social care services and community-based services. Transcripts were coded by two researchers and analysed using thematic analysis. Fifteen interviews were conducted with seven people with YOD or LOD and 14 family carers between January and March 2020. Some interviews were conducted only with the person with dementia, because they did not have a family carer, and others were conducted only with the family carer, because the person with dementia was in the severe stages of the condition. Results: Four themes emerged from the interviews: (1) Getting the ball rolling: the process of diagnosis; (2) Balancing the support needs of people with dementia and carers; (3) Barriers to accessing support; and (4) Facilitators to accessing support. Inequities existed for both YOD and LOD, with emerging evidence of unequal experiences in accessing care at the beginning of the COVID-19 pandemic. Discussion: People with YOD and LOD and their carers require better support in accessing services after a diagnosis. Greater understanding of the pathways through which inequalities materialise are needed, especially those that might have been disrupted or exacerbated by the COVID-19 pandemic.

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Impact of COVID-19 related social support service closures on people with dementia and unpaid carers: a qualitative study

Cited by 231 publications

References 30 publications

Care in times of COVID-19: The impact of the pandemic on informal caregiving in Austria

Care in times of COVID-19: The impact of the pandemic on informal caregiving in Austria

COVID-19-related social support service closures and mental well-being in older adults and those affected by dementia: a UK longitudinal survey

Health Inequities in the Care Pathways for People Living with Young- and Late-Onset Dementia: From Pre-COVID-19 to Early Pandemic

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