When Caregiving Ends: The Experiences of Former Family Caregivers of People With Dementia

Corey, Kristin L.; McCurry, Mary K.

doi:10.1093/geront/gnw205

Cited by 34 publications

(57 citation statements)

References 30 publications

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“…The finding that reporting providing care only at the first wave was associated with sleep disturbance at the second wave is in line with qualitative research suggesting that sleep disturbance extends beyond the end of informal care provision. 62 …”

Section: Discussionmentioning

confidence: 99%

Informal Care and Sleep Disturbance Among Caregivers in Paid Work: Longitudinal Analyses From a Large Community-Based Swedish Cohort Study

Sacco

Leineweber

Platts

2017

Sleep

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Study ObjectivesTo examine cross-sectionally and prospectively whether informal caregiving is related to sleep disturbance among caregivers in paid work.MethodsParticipants (N = 21604) in paid work from the Swedish Longitudinal Occupational Survey of Health. Sleeping problems were measured with a validated scale of sleep disturbance (Karolinska Sleep Questionnaire). Random-effects modeling was used to examine the cross-sectional association between informal caregiving (self-reports: none, up to 5 hours per week, over 5 hours per week) and sleep disturbance. Potential sociodemographic and health confounders were controlled for and interactions between caregiving and gender included. Longitudinal random-effects modeling of the effects of changes in reported informal caregiving upon sleep disturbance and change in sleep disturbance was performed.ResultsIn multivariate analyses controlling for sociodemographics, health factors, and work hours, informal caregiving was associated cross-sectionally with sleep disturbance in a dose–response relationship (compared with no caregiving, up to 5 hours of caregiving: β = 0.03; 95% CI: 0.01, 0.06, and over 5 hours: β = 0.08; 95% CI: 0.02, 0.13), results which varied by gender. Cessation of caregiving was associated with reductions in sleep disturbance (β = −0.08; 95% CI: −0.13, −0.04).ConclusionsThis study provides evidence for a causal association of provision of informal care upon self-reported sleep disturbance. Even low-intensity care provision was related to sleep disturbance among this sample of carers in paid work. The results highlight the importance of addressing sleep disturbance in caregivers.

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Section: Discussionmentioning

confidence: 99%

Informal Care and Sleep Disturbance Among Caregivers in Paid Work: Longitudinal Analyses From a Large Community-Based Swedish Cohort Study

Sacco

Leineweber

Platts

2017

Sleep

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“…Informed by the existing literature on predictors of regret, we hypothesized that increased burden of care and low socioeconomic status, as well as more decisional conflict, would be associated with more decision regret. 25,26 We also predicted that the better the match between an informal caregiver’s housing preference and the actual decision made, and the more SDM elements that were present in decision making, the less decision regret would occur. 17…”

Section: Introductionmentioning

confidence: 99%

Decision Regret among Informal Caregivers Making Housing Decisions for Older Adults with Cognitive Impairment: A Cross-sectional Analysis

Elidor¹,

Charif

Djade³

et al. 2020

Med Decis Making

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Background. Informal caregivers are regularly faced with difficult housing decisions for older adults with cognitive impairment. They often regret the decision they made. We aimed to identify factors associated with decision regret among informal caregivers engaging in housing decisions for cognitively impaired older adults. Methods. We performed a secondary analysis of cross-sectional data collected from a cluster-randomized trial. Eligible participants were informal caregivers involved in making housing decisions for cognitively impaired older adults. Decision regret was assessed after caregivers’ enrollment in the study using the Decision Regret Scale (DRS), scored from 0 to 100. We used a conceptual framework of potential predictors of regret to identify independent variables. We performed multilevel analyses using a mixed linear model by estimating fixed effects (β) and 95% confidence intervals (CIs). Results. The mean (SD) DRS score of 296 informal caregivers (mean [SD] age, 62 [12] years) was 12.4 (18.4). Factors associated with less decision regret were having a college degree compared to primary education (β [95% CI]: –11.14 [–18.36, –3.92]), being married compared to being single (–5.60 [–10.05, –1.15]), informal caregivers’ perception that a joint process occurred (–0.14 [–0.25, –0.02]), and older adults’ not having a specific housing preference compared to preferring to stay at home (–4.13 [–7.40, –0.86]). Factors associated with more decision regret were being retired compared to being a homemaker (7.74 [1.32, 14.16]), higher burden of care (0.14 [0.05, 0.22]), and higher decisional conflict (0.51 [0.34, 0.67]). Limitations. Our analysis may not illustrate all predictors of decision regret among informal caregivers. Conclusions. Our findings will allow risk-mitigation strategies for informal caregivers at risk of experiencing regret.

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“…However, we found evidence of the positive aspects of caregiving, which was noted as an important outcome. For example, where relationships with a caring network become strained,10 62 71 93 the exchange of knowledge and trusting relationships56 57 70 90 generated rewarding aspects to the care experience 5 50 94–96…”

Section: Resultsmentioning

confidence: 99%

Social networks, social capital and end-of-life care for people with dementia: a realist review

et al. 2019

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Objectives(1) To develop an understanding of how social capital may be conceptualised within the context of end-of-life care and how it can influence outcomes for people with dementia and their families with specific reference to the context and mechanisms that explain observed outcomes. (2) To produce guidance for healthcare systems and researchers to better structure and design a public health approach to end-of-life care for people with dementia.DesignA realist review.Data sourcesMEDLINE, EMBASE, CINAHL and grey literature.AnalysisWe conceptualised social capital as a complex intervention and, in order to understand how change is generated, used realist evaluation methods to create different configurations of context, mechanism and outcomes. We conducted an iterative search focusing on social capital, social networks and end-of-life care in dementia. All study designs and outcomes were screened and analysed to elicit explanations for a range of outcomes identified. Explanations were consolidated into an overarching programme theory that drew on substantive theory from the social sciences and a public health approach to palliative care.ResultsWe identified 118 articles from 16 countries ranging from 1992 to 2018. A total of 40 context-mechanism-outcome configurations help explain how social capital may influence end-of-life care for people with dementia. Such influence was identified within five key areas. These included: (1) socially orientating a person with dementia following diagnosis; (2) transitions in the physical environment of care; (3) how the caregiving experience is viewed by those directly involved with it; (4) transition of a person with dementia into the fourth age; (5) the decision making processes underpinning such processes.ConclusionThis review contributes to the dispassionate understanding of how complex systems such as community and social capital might be viewed as a tool to improve end-of-life care for people with dementia.PROSPERO registration numberCRD42018084524.

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When Caregiving Ends: The Experiences of Former Family Caregivers of People With Dementia

Cited by 34 publications

References 30 publications

Informal Care and Sleep Disturbance Among Caregivers in Paid Work: Longitudinal Analyses From a Large Community-Based Swedish Cohort Study

Informal Care and Sleep Disturbance Among Caregivers in Paid Work: Longitudinal Analyses From a Large Community-Based Swedish Cohort Study

Decision Regret among Informal Caregivers Making Housing Decisions for Older Adults with Cognitive Impairment: A Cross-sectional Analysis

Social networks, social capital and end-of-life care for people with dementia: a realist review

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