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Experiences of oldest-old caregivers whose partner is approaching end-of-life: A mixed-method systematic review and narrative synthesis.

ABSTRACT: Population ageing has rapidly increased the number of people requiring end-of-life care across the globe. Governments have responded by promoting end-of-life in the community. Partly as a consequence, older spouses are frequently providing for their partner's end-of-life care at home, despite potentially facing their own health issues. While there is an emerging literature on young-old caregivers, less is known about spouse carers over 75 who are likely to face specific challenges associated with their advanced age and relationship status. The aim of this review, therefore, is to identify and synthesise the literature concerning the experiences of caregiver's aged 75 and over whose partner is approaching end-of-life. We conducted a mixed-method systematic review and narrative synthesis of the empirical literature published between 1985 and May 2019, identified from six databases: Medline, PsychINFO, Cumulative Index to Nursing and Allied Health Literature, Embase, Sociological Abstracts and Social Service Abstracts. Hand searching and reference checking were also conducted. Gough's Weight of Evidence and Morgan's Feminist Quality Appraisal tool used to determine the quality of papers. From the initial 7819 titles, 10 qualitative studies and 9 quantitative studies were included. We identified three themes: 1) "Embodied impact of care" whereby caring was found to negatively impact carers physical and psychological health, with adverse effects continuing into bereavement; 2) "Caregiving spouse's conceptualisation of their role" in which caregiver's navigated their self and marriage identities in relation to their partner's condition and expectations about gender and place; 3) "Learning to care" which involved learning new skills and ways of coping to remain able to provide care. We identified a recent up-surge in published papers about very old spousal caregivers, which now comprise a small, medium-quality evidence base. This review outlines a range of potential lines of inquiry for future research including further clarification of the impact of caregiving on the likelihood of mortality, the incidence of men and women providing end-of-life care amongst this age group, and the role of anticipatory grief in shaping their perceptions of their relationship and their own longevity.

SUBMITTER: Morgan T

PROVIDER: S-EPMC7282625 | biostudies-literature | 2020

REPOSITORIES: biostudies-literature

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Experiences of oldest-old caregivers whose partner is approaching end-of-life: A mixed-method systematic review and narrative synthesis.

Morgan Tessa T Bharmal Aamena A Duschinsky Robbie R Barclay Stephen S

PloS one 20200609 6

Population ageing has rapidly increased the number of people requiring end-of-life care across the globe. Governments have responded by promoting end-of-life in the community. Partly as a consequence, older spouses are frequently providing for their partner's end-of-life care at home, despite potentially facing their own health issues. While there is an emerging literature on young-old caregivers, less is known about spouse carers over 75 who are likely to face specific challenges associated wit ...[more]

PMID: 32516312

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Project description:BackgroundDementia with Lewy bodies (DLB) is one of the most common degenerative dementias, but research on end-of-life experiences for people with DLB and their caregivers is limited.MethodDyads of individuals with moderate-advanced DLB and their primary informal caregivers were recruited from specialty clinics, advocacy organizations, and research registries and followed prospectively every 6 months. The current study examines results of caregiver study visits 3 months after the death of the person with DLB. These visits included the Last Month of Life survey, study-specific questions, and a semi-structured interview querying end-of-life experiences.ResultsIndividuals with DLB (n = 50) died 3.24 ± 1.81 years after diagnosis, typically of disease-related complications. Only 44% of caregivers reported a helpful conversation with clinicians regarding what to expect at the end of life in DLB. Symptoms commonly worsening prior to death included: cognition and motor function, ADL dependence, behavioral features, daytime sleepiness, communication, appetite, and weight loss. Almost 90% of participants received hospice care, but 20% used hospice for <1 week. Most caregivers reported overall positive experiences in the last month of life, but this was not universal. Having information about DLB and what to expect, access to support, and hospice care were healthcare factors associated with positive and negative end of life experiences. Hospice experiences were driven by communication, care coordination, quality care, and caregiver education.ConclusionMost caregivers of individuals who died with DLB reported positive end-of-life experiences. However, the study identified multiple opportunities for improvement relating to clinician counseling of patients/families, support/hospice referrals, and monitoring individuals with DLB to identify approaching end of life. Future research should quantitatively identify changes that herald end of life in DLB and develop tools that can assist clinicians in evaluating disease stage to better inform counseling and timely hospice referrals.Trial registrationTrial registration information: NCT04829656.

Project description:BackgroundOlder people with kidney failure often choose conservative kidney care. The experiences and quality of life (QOL) of caregivers who support them are incompletely characterized.ObjectiveTo determine the burden, QOL, and understand experiences of caregivers supporting patients managed conservatively.DesignSystematic review of quantitative and qualitative studies.Sources of informationPubMed, Embase, PsycINFO, CINAHL, and MEDLINE electronic databases were systematically searched for quantitative and qualitative studies published between January 2000 and July 2020.SubjectsCaregivers of adults with kidney failure (estimated glomerular filtration rate < 15 mL/min/1.73 m2) managed conservatively.MethodsData were extracted by 2 independent reviewers using a prespecified extraction tool. Study quality was assessed using the Critical Appraisal Skills Program (CASP) tool.MeasurementsDescriptive reports of demographics, measurement scales, and outcomes. Thematic synthesis of qualitative data.ResultsSix studies met inclusion criteria, including 3 quantitative and 3 descriptive qualitative studies. Caregivers of patients receiving conservative kidney management (CKM) experienced significant caregiver burden and similar impacts to their QOL as those caring for patients receiving dialysis. Thematic synthesis revealed 5 themes: Understanding the concept of CKM, Need for involvement in the decision for CKM, Identifying available supports, Uncertainty about the future and negotiating deteriorations and dying, and Burden of care impacting on QOL.LimitationsLow numbers of included studies, data collection and recruitment biases in qualitative studies and small caregiver numbers in quantitative studies, limit transferability of findings. Heterogeneity in study design and outcome measures precluded meta-analysis.ConclusionsCaregivers of patients with conservatively managed kidney failure suffer significant burden and experience QOL comparable with those caring for patients on dialysis. Limited understanding and involvement in conservative management decision making, and a fear of deterioration and dying, result in anxiety in caregivers. Further research into the experiences of caregivers will help support both caregivers and the patients who choose conservative management.RegistrationPROSPERO registration number CRD42021209811.

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Project description:Introduction:Frailty has been studied among the old population due to its association with negative outcomes. Presently there is no gold standard for measuring frailty, but several studies have used the frailty phenotype of Fried consisting of five components (weakness, slowness, unintentional weight loss, exhaustion, and low physical activity) that classify individuals as robust, pre-frail, or frail, depending on the number of components affected, respectively, zero, one or two, and three or more. This study aims to explore the specific contribution of each of these components to the frailty phenotype in a sample of oldest old community-dwelling individuals. Materials and Methods:Individuals aged 80+ years old living in the community (N = 142) participated in this study. Sociodemographic data (age, sex, educational level, and marital status) and Fried's frailty phenotype were collected. Descriptive analysis summarized sociodemographic information and the frailty components. Multiple correspondence analysis (MCA) was performed to detect and explore relationships between frailty's five components. Results:Participants had a mean age of 88.07 years (SD = 5.30 years) and were mainly women (73.9%). The majority of the sample were considered frail (71.8%) and pre-frail (24.7%), and the most recurrent component for both groups was slowness. From the MCA analysis, a two-dimension solution was considered the most adequate, with 53.47% of variance explained. Dimension 1 (32.21% of variance explained) showed weakness as the most discriminant component; dimension 2 (21.26% of variance explained) showed unintentional weight loss as the most discriminant component. Discussion:Results revealed a high number of pre-frail and frail participants. MCA proved to add an important understanding in examining the frailty phenotype; it revealed weakness as the most discriminant component for dimension 1, suggesting a high association with the frailty phenotype. MCA also identified two main features of frailty: one related with physical features (motor behavioral and grip strength) including weakness, low physical activity, and slowness; and the second related with intrinsic conditions (unintentional weight loss and exhaustion). Conclusion:This study corroborates the need of a differentiated approach to the frailty phenotype among very old individuals, bringing for consideration the specific influence of its components.

Dataset Information

Experiences of oldest-old caregivers whose partner is approaching end-of-life: A mixed-method systematic review and narrative synthesis.

Publications

Experiences of oldest-old caregivers whose partner is approaching end-of-life: A mixed-method systematic review and narrative synthesis.

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