Informal Caregivers During the COVID-19 Pandemic Perceive Additional Burden: Findings From an Ad-hoc Survey in Germany

Budnick, Andrea; Hering, Christian; Eggert, Simon; Teubner, Christian; Suhr, Ralf; Kuhlmey, Adelheid; Gellert, Paul

doi:10.21203/rs.3.rs-122548/v1

Cited by 28 publications

(37 citation statements)

References 14 publications

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“…Furthermore, in some instances carers may underestimate the abilities of the person with dementia or overestimate di culties, while the responses of the person with dementia are more accurate relative to objective measures [30]. The reports carers provide when acting as informants are known to be affected by stress [31,32], and there is plenty of evidence to indicate that carers experienced elevated levels of stress during the pandemic [18, [33][34][35][36][37][38]. Second, only a handful of studies were able to offer any comparison with pre-pandemic measures and typically these reported on people participating in intervention trials, which tend to have highly selected samples, or those who had recently attended a memory clinic for assessment.…”

Section: Introductionmentioning

confidence: 99%

Impact of COVID-19 on ‘living well’ with mild-to-moderate dementia in the community: findings from the IDEAL cohort

Clare¹,

Martyr²,

Gamble³

et al. 2021

Preprint

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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 neighbourhood 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 personalised 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.

show abstract

Section: Introductionmentioning

confidence: 99%

Impact of COVID-19 on ‘living well’ with mild-to-moderate dementia in the community: findings from the IDEAL cohort

Clare¹,

Martyr²,

Gamble³

et al. 2021

Preprint

View full text Add to dashboard Cite

show abstract

“…Meanwhile, the prevalence of mental-emotional disorders in the population of East Java Province aged ≥ 15 years is 6.82% (4) .The prevalence of Mojokerto Regency, in this case, is less than 5%.…”

Section: Introductionmentioning

confidence: 79%

“…Closure of rehabilitation and child care centers in Hong Kong. means that people with mental disorders are no longer able to receive therapy, resulting in a decrease in their function and an increase in dependence on caregivers [4]. This situation is exacerbated by social isolation and the act of working from home, as participants have to provide longer care for their family members with reduced informal and formal support.…”

Section: Discussionmentioning

confidence: 99%

See 1 more Smart Citation

“What Are The Challenges of Treating Mentally Impaired Patients in The Era of a Pandemic?” : Qualitative Exploration Caregivers

Yusuf

Acob

Tristiana

et al. 2021

Preprint

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Introduction: Caregivers provide support for mental disorders in the form of care such as assistance in daily life activities, but during a pandemic it is a challenge in itself. Objective: To explore the caregiver's experience in caring for clients with mental disorders in remote areas during a pandemic. Methods: Using a phenomenological qualitative research design with 25 participants. The sampling technique used was purposive sampling with data collection techniques using in-depth interviews and field notes then analyzed using IPA (Interpretative Phenomenological Analysis). Results: This study found 6 themes, namely: Caregiver Workload and Tension, Threats to Caregivers' Physical and Psychological Well-Being, The Need for a Continuing Family Role, Holistic Care, Coping Strategy, Communication is getting harder.Conclusion: our research provides unique findings about the experience of treating mental disorders needs during the COVID-19 pandemic. Caregivers of mental disorders struggle with parenting difficulties during the pandemic, which poses a threat to their well-being and potential harm to the mental disorder survivor-caregiver relationship.

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“…Furthermore, in some instances carers may underestimate the abilities of the person with dementia or overestimate difficulties, while the responses of the person with dementia are more accurate relative to objective measures [30]. The reports carers provide when acting as informants are known to be affected by stress [31,32], and there is plenty of evidence to indicate that carers experienced elevated levels of stress during the pandemic [18,[33][34][35][36][37][38]. Second, only a handful of studies were able to offer any comparison with pre-pandemic measures and typically these reported on people participating in intervention trials, which tend to have highly selected samples, or those who had recently attended a memory clinic for assessment.…”

Section: Introductionmentioning

confidence: 99%

Impact of COVID-19 on ‘living well’ with mild-to-moderate dementia in the community: findings from the IDEAL cohort

Clare¹,

Martyr²,

Gamble³

et al. 2021

Preprint

View full text Add to dashboard Cite

BackgroundNegative 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.ObjectiveWe aimed to explore the impact of the pandemic on community-dwelling individuals with mild-to-moderate dementia and compare responses with pre-pandemic data.MethodsDuring 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.ResultsSignificant 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 neighbourhood characteristics.ConclusionEfforts 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 personalised 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.

show abstract

Informal Caregivers During the COVID-19 Pandemic Perceive Additional Burden: Findings From an Ad-hoc Survey in Germany

Cited by 28 publications

References 14 publications

Impact of COVID-19 on ‘living well’ with mild-to-moderate dementia in the community: findings from the IDEAL cohort

Impact of COVID-19 on ‘living well’ with mild-to-moderate dementia in the community: findings from the IDEAL cohort

“What Are The Challenges of Treating Mentally Impaired Patients in The Era of a Pandemic?” : Qualitative Exploration Caregivers

Impact of COVID-19 on ‘living well’ with mild-to-moderate dementia in the community: findings from the IDEAL cohort

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