Depression of Family Caregivers Is Associated with Disagreements on Life-Sustaining Preferences for Treating Patients with Dementia.
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ABSTRACT:
SUBMITTER: Tsai CF
PROVIDER: S-EPMC4521939 | biostudies-other | 2015
REPOSITORIES: biostudies-other
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Project description:PurposeThe purpose of this study was to describe the meaning of the lived experience of family caregivers caring for their loved ones who were dependent upon life-sustaining technologies while in the hospital.MethodsThis study followed van Manen's hermeneutic phenomenological approach to generate and analyze data to describe the experience of ten family caregivers who met the following inclusion criteria: a family member who participated actively in caring for the loved one who was dependent upon technologies for human care. Data were collected using individual in-depth interviews. The interview transcriptions were analyzed using van Manen's phenomenological approach, while Lincoln and Guba's criteria were used to establish trustworthiness of the study.FindingsFour thematic categories structured the meaning of the experience: Being an invisible person; supporting patients' wholeness; struggling to trust technologies for human care; and living in uncertainty. These thematic categories were reflective of Van Manen's four lived worlds of body, relation, space, and time.ConclusionUnderstanding the experience of family caregivers challenges nurses to express their technological competencies in caring more fully in their human care. Locsin's theory of Technological Competency as Caring in Nursing was used to explain and describe the meaning of the experiences of family caregivers caring for patients who were dependent upon technologies for human care, and foster nursing practice as caring in nursing.
| S-EPMC6626285 | biostudies-literature
Project description:Family caregivers of dementia patients are at increased risk of developing depression or anxiety. A multi-component program designed to mobilize support of family networks demonstrated effectiveness in decreasing depressive symptoms in caregivers. However, the impact of an intervention consisting solely of family meetings on depression and anxiety has not yet been evaluated. This study examines the preventive effects of family meetings for primary caregivers of community-dwelling dementia patients.A randomized multicenter trial was conducted among 192 primary caregivers of community dwelling dementia patients. Caregivers did not meet the diagnostic criteria for depressive or anxiety disorder at baseline. Participants were randomized to the family meetings intervention (n?=?96) or usual care (n?=?96) condition. The intervention consisted of two individual sessions and four family meetings which occurred once every 2 to 3 months for a year. Outcome measures after 12 months were the incidence of a clinical depressive or anxiety disorder and change in depressive and anxiety symptoms (primary outcomes), caregiver burden and quality of life (secondary outcomes). Intention-to-treat as well as per protocol analyses were performed.A substantial number of caregivers (72/192) developed a depressive or anxiety disorder within 12 months. The intervention was not superior to usual care either in reducing the risk of disorder onset (adjusted IRR 0.98; 95% CI 0.69 to 1.38) or in reducing depressive (randomization-by-time interaction coefficient?=?-1.40; 95% CI -3.91 to 1.10) or anxiety symptoms (randomization-by-time interaction coefficient?=?-0.55; 95% CI -1.59 to 0.49). The intervention did not reduce caregiver burden or their health related quality of life.This study did not demonstrate preventive effects of family meetings on the mental health of family caregivers. Further research should determine whether this intervention might be more beneficial if provided in a more concentrated dose, when applied for therapeutic purposes or targeted towards subgroups of caregivers.Controlled-Trials.com ISRCTN90163486.
| S-EPMC3267736 | biostudies-literature
Project description:People with dementia have been described as the 'disadvantaged dying' with poor end-of-life care. Towards the end of life, people with dementia cannot report on the care they receive. It is therefore important to talk to caregivers; however, few have explored the views about end-of-life care from the caregivers' perspective. The majority of research on family caregivers has focussed on the burden and psychological impact of caring for a relative with dementia.This study aimed to explore the views of family caregivers about quality end-of-life care for people with dementia.Qualitative study using in-depth interviews and analysed using thematic analysis.Purposive sampling from a third sector organisation's caregiver network was used to recruit 47 caregivers in England (2012-2013), consisting of (1) family caregivers of someone who had recently received a diagnosis of dementia, (2) family caregivers currently caring for someone with dementia and (3) bereaved family caregivers.Three over-arching themes were derived from the interviewees' discourse, including maintaining the person within, fostering respect and dignity and showing compassion and kindness.End-of-life care for people with dementia does not differ from care throughout the dementia trajectory. Throughout the findings, there is an implicit underlying theme of conflict: conflict between family caregivers and an increasingly systematised service of care and conflict between family caregivers and professionals. This study has in particular demonstrated the importance of the psycho-social aspects of care, aligning with the holistic definition of palliative care.
| S-EPMC5625846 | biostudies-other
Project description:ObjectivesLife-sustaining treatment is any treatment that serves to prolong life without reversing the underlying medical conditions, and includes cardiopulmonary resuscitation, mechanical ventilation, haemodialysis and left ventricular assist devices. This study aimed to investigate the thoughts on life-sustaining treatment of Koreans and to assess the factors associated with deciding to not receive life-sustaining treatment if they develop a terminal disease.DesignCross-sectional study.SettingGuro-gu centre for dementia from 1 May 2018 to 31 December 2019.ParticipantsIn total, 150 individuals participated in this study.Outcome measuresThe questionnaire consisted of self-report items with some instructions, demographic characteristics, thoughts on life-sustaining treatment and psychosocial scales. The preferences of the participants were investigated on the assumption that they develop terminal cancer. The psychosocial scales included the Generalised Anxiety Disorder-7 (GAD-7), Patient Health Questionnaire-9 (PHQ-9), Connor-Davidson Resilience Scale and Multidimensional Scale of Perceived Social Support (MSPSS).ResultsWe classified our participants into two groups: individuals who wanted to receive life-sustaining treatment (IRLT) and individuals who wanted to not receive life-sustaining treatment (INLT). There were twice as many participants in the INLT group than there were in the IRLT. In making this decision, the INLT group focused more on physical and mental distress. Additionally, 32.7% of participants responded that terminal status was an optimal time for this decision, but more participants want to decide it earlier. The GAD-7 and PHQ-9 scores were significantly higher in the INLT group than in the IRLT group. However, the INLT group had significantly lower MSPSS family scores.ConclusionOur findings can help assess issues regarding advance directives and life-sustaining treatment, and will be a reference for designing future studies on this issue.
| S-EPMC7831737 | biostudies-literature
Project description:Depression is associated with disturbances to sleep and the 24-h sleep-wake pattern (known as the rest-activity rhythm: RAR). However, there remains a need to identify the specific sleep/RAR correlates of depression symptom severity in population subgroups, such as strained dementia caregivers, who are at elevated risk for major depressive disorder. We assessed the cross-sectional associations of sleep/RARs with non-sleep depression symptom severity among 57 (mean age: 74 years, standard deviation: 7.4) strained dementia caregivers who were currently without clinical depression. We derived sleep measures from polysomnography and actigraphy, modelled RARs using a sigmoidally transformed cosine curve and measured non-sleep depression symptom severity using the Hamilton Depression Rating Scale (HRDS) with sleep items removed. The following sleep-wake measures were associated with greater depression symptom severity (absolute Spearman's correlations ranged from 0.23 to 0.32): more time awake after sleep onset (WASO), higher RAR middle level (mesor), relatively shorter active periods (alpha), earlier evening settling time (down-mesor) and less steep RARs (beta). In multivariable analysis, high WASO and low RAR beta were associated independently with depression symptom severity. Predicted non-sleep HDRS means (95% confidence intervals) in caregivers with and without these characteristics were: normal WASO/beta = 3.7 (2.3-5.0), high WASO/normal beta = 5.5 (3.5-7.6), normal WASO/low beta = 6.3 (3.6-8.9) and high WASO/low beta = 8.1 (5.3-10.9). Thus, in our sample of strained caregivers, greater sleep fragmentation (WASO) and less sustained/sharply segregated resting and active periods (low RAR beta) correlate uniquely with depression symptom severity. Longitudinal studies are needed to establish whether these independent sleep-wake correlates of depression symptoms explain heightened depression risk in dementia caregivers.
| S-EPMC5681446 | biostudies-literature
Project description:There are conflicting assumptions regarding how patients' preferences for life-sustaining treatment change over the course of serious illness.To examine changes in treatment preferences over time.Longitudinal cohort study with 2-year follow-up.Two hundred twenty-six community-dwelling persons age > or =60 years with advanced cancer, congestive heart failure, or chronic obstructive pulmonary disease.Participants were asked, if faced with an illness exacerbation that would be fatal if untreated, whether they would: a) undergo high-burden treatment at a given likelihood of death and b) undergo low-burden treatment at a given likelihood of severe disability, versus a return to current health.There was little change in the overall proportions of participants who would undergo therapy at a given likelihood of death or disability from first to final interview. Diversity within the population regarding the highest likelihood of death or disability at which the individual would undergo therapy remained substantial over time. Despite a small magnitude of change, the odds of participants' willingness to undergo high-burden therapy at a given likelihood of death and to undergo low-burden therapy at a given likelihood of severe cognitive disability decreased significantly over time. Greater functional disability, poorer quality of life, and lower self-rated life expectancy were associated with decreased willingness to undergo therapy.Diversity among older persons with advanced illness regarding treatment preferences persists over time. Although the magnitude of change is small, there is a decreased willingness to undergo highly burdensome therapy or to risk severe disability in order to avoid death over time and with declining health status.
| S-EPMC1839865 | biostudies-other
Project description:ObjectiveTo assess whether medical orders within Physician Orders for Life-Sustaining Treatment (POLST) forms reflect patients' preferences for care at the end of life.DesignThis cross-sectional study assessed the agreement between medical orders in POLST forms and the free-form text documentation of an advance care planning conversation performed by an independent researcher during a single episode of hospitalization.Setting and participantsInpatients at a single public university hospital, aged 21 years or older, and for whom one of their attending physicians provided a negative answer to the following question: "Would I be surprised if this patient died in the next year?" Data collection occurred between October 2016 and September 2017.MeasuresAgreement between medical orders in POLST forms and the free-form text documentation of an advance care planning conversation was measured by kappa statistics.ResultsSixty-two patients were interviewed. Patients' median (interquartile range) age was 62 (56-70) years, and 21 patients (34%) were women. Overall, in 7 (11%) cases, disagreement in at least 1 medical order for life-sustaining treatment was found between POLST forms and the content of the independent advance care planning conversation. The kappa statistic for cardiopulmonary resuscitation was 0.92 [95% confidence interval (CI): 0.82-1.00]; for level of medical intervention, 0.90 (95% CI: 0.81-0.99); and for artificially administered nutrition, 0.87 (95% CI: 0.75-0.98).Conclusions and implicationsThe high level of agreement between medical orders in POLST forms and the documentation in an independent advance care planning conversation offers further support for the POLST paradigm. In addition, the finding that the agreement was not 100% underscores the need to confirm frequently that POLST medical orders accurately reflect patients' current values and preferences of care.
| S-EPMC8393557 | biostudies-literature
Project description:Patients with dementia express a set of problematic and deteriorating symptoms, along with self-care dependency. Over time, the mental health of family caregivers of persons with dementia may be affected, putting them at a high risk for psychopathology, which may be associated with endangered wellbeing of people with dementia. This cross-sectional instrumental design study examined the psychometric properties of the Depression Anxiety Stress Scale 8-items (DASS-8), DASS-12, and DASS-21 in a convenient sample of 571 caregivers from northern Italy and southern Switzerland (mean age = 53 years, SD = 12, range = 24-89 years). A bifactor structure of the three measures had the best fit; some items of the DASS-12/DASS-21 failed to load on their domain-specific factors. The three-factor structure was invariant across various groups (e.g., gender and education), expressed adequate reliability and convergent validity, and had strong positive correlation with the three-item UCLA Loneliness Scale (UCLALS3). Distress scores did not differ among carers of different types of dementia (Alzheimer's disease vs. other types, e.g., vascular dementia). However, distress scores were significantly high among female individuals, adult children caregivers, those caring for dependent patients, and those who received help with care. For 54.9 and 38.8% of the latter, care was provided by relatives and health professionals, respectively. Since the DASS-8 expresses adequate psychometrics comparable with the DASS-21, it may be used as a brief measure of distress in this population.
| S-EPMC9641276 | biostudies-literature
Project description:ObjectivesSelf-reported activity restriction is an established correlate of depression in dementia caregivers (dCGs). It is plausible that the daily distribution of objectively measured activity is also altered in dCGs with depression symptoms; if so, such activity characteristics could provide a passively measurable marker of depression or specific times to target preventive interventions. We therefore investigated how levels of activity throughout the day differed in dCGs with and without depression symptoms, then tested whether any such differences predicted changes in symptoms 6 months later.Design, setting, participants, and measurementsWe examined 56 dCGs (mean age = 71, standard deviation (SD) = 6.7; 68% female) and used clustering to identify subgroups which had distinct depression symptom levels, leveraging baseline Center for Epidemiologic Studies of Depression Scale-Revised Edition and Patient Health Questionnaire-9 (PHQ-9) measures, as well as a PHQ-9 score from 6 months later. Using wrist activity (mean recording length = 12.9 days, minimum = 6 days), we calculated average hourly activity levels and then assessed when activity levels relate to depression symptoms and changes in symptoms 6 months later.ResultsClustering identified subgroups characterized by: (1) no/minimal symptoms (36%) and (2) depression symptoms (64%). After multiple comparison correction, the group of dCGs with depression symptoms was less active from 8 to 10 AM (Cohen's d ≤ -0.9). These morning activity levels predicted the degree of symptom change on the PHQ-9 6 months later (per SD unit β = -0.8, 95% confidence interval: -1.6, -0.1, p = 0.03) independent of self-reported activity restriction and other key factors.ConclusionsThese novel findings suggest that morning activity may protect dCGs from depression symptoms. Future studies should test whether helping dCGs get active in the morning influences the other features of depression in this population (i.e. insomnia, intrusive thoughts, and perceived activity restriction).
| S-EPMC7188574 | biostudies-literature
Project description:OBJECTIVE:The study examined diurnal regulation of salivary alpha-amylase (sAA) in association with daily stressors, adult day services (ADS) use, and other caregiving characteristics. METHOD:A sample of 165 family caregivers of individuals with dementia (IWD) completed an 8-day diary study. Caregivers provided 5 saliva samples across the 8 days. On some days, caregivers provided all or most of the care. On other days, their relative attended ADS for part of the day. A 3-level unconditional linear spline model was fit to describe the typical sAA diurnal rhythms. Predictors were then added to the unconditional model to test the hypotheses on ADS use and daily stressors. RESULTS:Daily ADS use did not have an effect on diurnal sAA regulation. However, controlling for daily ADS use, greater ADS use over the 8 days was associated with a more prominent rise between 30 min after wake-up and before lunch, and a more prominent decline between before lunch and late afternoon. Fewer ADS days were associated with a more flattened sAA diurnal rhythm. Additionally, greater daily care-related stressor exposures had a within-person association with lower sAA levels in the late afternoon. Care-related stressor exposures had significant within- and between-person associations with sAA diurnal slopes. Furthermore, daily positive experiences had a significant between-person association with sAA diurnal slopes. CONCLUSIONS:Caring for a disabled family member may heighten the vulnerability to potential physiological conditions. Respite from care stressors from ADS use may have some biobehavioral benefits on sAA regulations. (PsycINFO Database Record
| S-EPMC5269608 | biostudies-literature