Estimating the Quantity and Economic Value of Family Caregiving for Community-Dwelling Older Persons in the Last Year of Life
ABSTRACT To estimate the quantity and economic value of informal care provided to older persons during their final year of life in the community.
Retrospective analysis of publicly available nationally representative survey data.
This retrospective study used data from the Health and Retirement Study, a nationally representative, longitudinal study of community-dwelling older people.
Older people who died between 2000 and 2002.
Data were extracted from the 2002 "exit survey" and linked with characteristics of caregivers from the helper file. Ordinary least squares regression was used to estimate hours of informal caregiving for community-dwelling older people (N=990). Adjusted hours were multiplied by the 2002 national average home aide wage (9.16 USD per hour). Sensitivity tests were performed using the 10th percentile wage rate (6.56 USD) and 90th percentile wage rate (12.34 USD).
Older people who died in the community received on average 65.8 hours per week of informal care in the last year of life. The estimated economic value ranges from 22,514 USD to 42,351 USD, which is equivalent to the annual direct replacement cost with a home aide in 2002.
Family members provide substantial assistance during the last year of life for older people who die in the community. If the informal care provided in the last year of life is replaced with a home aide, the total economic value for the United States would be approximately 1.4 billion USD (in 2002).
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ABSTRACT: BACKGROUND:: The stress and coping theory suggests that the impact of caregiving on caregivers' life depends more on personal psychological resources (ie, sense of coherence [SOC]) than on objective caregiving demands or social resources. However, SOC's mediation roles in helping caregivers cope with the challenges of end-of-life care have never been explored. OBJECTIVE:: The objective of this study was to evaluate the mediation effects of SOC on caregivers' depressive distress while providing end-of-life care. METHODS:: The Center for Epidemiological Studies-Depression Scale scores from a convenience sample of 621 family caregivers were analyzed using structural equation modeling. We used the Sobel test to verify the significance of SOC's mediation effects on the relationships between identified stressors (objective caregiving demands, patient symptom distress), appraisals (confidence in caregiving, subjective caregiving burden), and caregivers' depressive distress. RESULTS:: Sense of coherence mediated effects on relationships between Center for Epidemiological Studies-Depression Scale scores and subjective caregiving burden (P = .000), confidence in caregiving (P = .014), and objective caregiving demands (P = .000). Although the strength of SOC did not attenuate the impact of caregivers' perceived patient symptom distress on caregiver depressive distress, SOC mediated this effect secondarily through appraisals of subjective caregiving burden and confidence in caregiving. CONCLUSION:: Personal psychological resources, as indicated by the strength of personal SOC, significantly mediated the effects of caregiving stressors, appraisals of caregiving confidence, and subjective caregiving burden on depressive distress of family caregivers while providing end-of-life care. IMPLICATIONS FOR PRACTICE:: Nursing interventions to enhance caregivers' SOC may decrease their depressive distress through increasing their confidence in providing end-of-life care and lightening their perceived caregiving burden.Cancer nursing 10/2012; 36(6). DOI:10.1097/NCC.0b013e31826fc90d · 1.93 Impact Factor
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ABSTRACT: Abstract Background: Informal caregivers play a critical role in the provision of care to hospice patients. The care they provide often impacts their physical and psychological well-being. Objective: This study synthesized 58 articles pertaining to informal hospice caregiving, focusing on caregivers' satisfaction with hospice services, the physical and psychological well-being of caregivers, the predictors of caregivers' well-being, the direct impact of hospice services on caregivers, and the effectiveness of targeted interventions for hospice caregivers. Method: A systematic literature review of journal articles published between 1985 and 2012 was conducted. Results: The studies reviewed found hospice caregivers to experience clinically significant levels of anxiety, depression, and stress; however, results for caregiver burden and quality of life were mixed. Caregivers' perceptions regarding the meaningfulness of care as well as their levels of social support were associated with enhanced psychological outcomes. Conclusions: Beyond satisfaction with hospice services, the direct impact of standard hospice care on caregivers remains uncertain. Caregiver intervention studies have demonstrated promising outcomes signifying a need for additional investigations into hospice-specific interventions that improve caregiver outcomes. Additional research and resources are needed to assist hospice caregivers, with the ultimate goal of minimizing their psychiatric and physical morbidity and enhancing their caregiving and subsequent bereavement processes.Journal of Palliative Medicine 07/2014; 17(7):845-856. DOI:10.1089/jpm.2013.0196 · 2.06 Impact Factor
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ABSTRACT: OBJECTIVE: Few studies have investigated the impact of providing end-of-life care on family caregivers' depressive symptoms over time, especially until the patient's death. The purpose of this study was to identify the course and predictors of depressive symptoms in caregivers of terminally ill cancer patients until they died. METHODS: For this prospective, longitudinal study of 193 caregivers, data were collected using the Center for Epidemiological Studies Depression Scale, Symptom Distress Scale, Medical Outcomes Study Social Support Survey, and Caregiver Reaction Assessment scale. The course and predictors of depressive symptoms were analyzed using the generalized estimating equation model. RESULTS: Caregivers' depressive symptoms increased as the patient's death approached. Spousal or adult child family caregivers suffered more depressive symptoms if they self-identified as lacking social support and confidence in offering substantial assistance for younger terminally ill cancer patients with higher levels of symptom distress. Caregivers were susceptible to higher levels of depressive symptoms if they were heavily burdened by caregiving, that is, experienced more disruptions in schedules, greater health deterioration, stronger sense of family abandonment, and lower caregiver esteem. CONCLUSIONS: Psychological well-being of caregivers of terminally ill cancer patients deteriorated in response to progression of the patient's disease and impending death. Effective interventions should be developed and provided to high-risk caregivers as identified in our study. Increasing caregivers' strength of perceived social support, facilitating their confidence in caregiving, and alleviating their subjective burden may lessen the development of depressive symptoms in caregivers of terminally ill cancer patients throughout the dying process. Copyright © 2012 John Wiley & Sons, Ltd.Psycho-Oncology 06/2013; 22(6). DOI:10.1002/pon.3141 · 4.04 Impact Factor