2021
DOI: 10.1177/09697330211015339
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Pre-decision regret before transition of dependents with severe dementia to long-term care

Abstract: Background: To place a dependent with severe dementia in a nursing home is a painful and difficult decision to make. In collectivistic oriented societies or families, children tend to be socialised to care for ageing parents and to experience guilt and shame if they violate this principle. Leaving the care to professional caregivers does not conform with the cultural expectations of many ethnic groups and becomes a sign of the family’s moral failure. Research design: Qualitative design with individual in-depth… Show more

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Cited by 6 publications
(2 citation statements)
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“…Specifically, in dementia care, the contact person could take the responsibility to guide the family, inform the family, manage services, facilitate communication with other healthcare professionals and could facilitate overall collaboration between family and healthcare professionals ( Afram, 2015 ; Lethin et al, 2016 ; Stephan et al, 2015 ; Astrid Stephan et al, 2015 ). Moreover, our finding that many informal caregivers lacked support from healthcare professionals during nursing home transitions in dementia care (for example, when making transition-related decisions) is supported by other studies ( Hanssen et al., 2021 ; Lord, Livingston, Robertson, & Cooper, 2016 ). Next, adopting a proactive attitude as a healthcare professional in providing timely information to informal caregivers about dementia, palliative and end of life care to informal caregivers ( Goossens, Sevenants, Declercq, & Van Audenhove, 2020 ; White et al, 2018 ) and anticipating with informal caregivers on, for example, future transitions ( Ashbourne et al, 2021 ; Lethin et al, 2016 ) are essential to enhance interprofessional shared decision-making.…”
Section: Discussionsupporting
confidence: 87%
“…Specifically, in dementia care, the contact person could take the responsibility to guide the family, inform the family, manage services, facilitate communication with other healthcare professionals and could facilitate overall collaboration between family and healthcare professionals ( Afram, 2015 ; Lethin et al, 2016 ; Stephan et al, 2015 ; Astrid Stephan et al, 2015 ). Moreover, our finding that many informal caregivers lacked support from healthcare professionals during nursing home transitions in dementia care (for example, when making transition-related decisions) is supported by other studies ( Hanssen et al., 2021 ; Lord, Livingston, Robertson, & Cooper, 2016 ). Next, adopting a proactive attitude as a healthcare professional in providing timely information to informal caregivers about dementia, palliative and end of life care to informal caregivers ( Goossens, Sevenants, Declercq, & Van Audenhove, 2020 ; White et al, 2018 ) and anticipating with informal caregivers on, for example, future transitions ( Ashbourne et al, 2021 ; Lethin et al, 2016 ) are essential to enhance interprofessional shared decision-making.…”
Section: Discussionsupporting
confidence: 87%
“…In the literature, unobtrusive in-home sensors have been used to continuously measure multiple IADL-related behaviors, such as cooking and socializing, alongside several BADLs to establish differences in routine behaviors between people with dementia and controls [ 66 ]; researchers found increased variability in the performance of these activities in people with dementia compared with controls [ 66 ]. This suggests that measuring multiple IADL-related behaviors at the same time using multisystem digital technology can detect differences in routine across different levels of cognitive impairment, which is useful for understanding the timing of changes indicative of further functional decline; for example, changes in routine such as leaving a stove on can be an indicator for greater care provision, such as the transition into care facilities [ 67 ]. However, this review also suggests that measuring multiple IADL-related digital endpoints may be more useful than measuring discrete IADL outcomes alone to observe changes in function and inform machine learning algorithms focused on detecting changes over time [ 68 ].…”
Section: Discussionmentioning
confidence: 99%