By its definition, care is not (financially) reimbursed. However, care recipients often provide material and/or financial support to their carers, which may be related to a range of psychological and social outcomes, such as the financial fragility of care recipients, changes in the quality of relationships and care, or psychological burden. In this article, I provide a brief overview of the extant knowledge on the topic and discuss some of the research questions that should be addressed in the future, both through analyses of longitudinal data and through focused research projects, linking them to the aforementioned outcomes and overall well-being of the carers.
Objective: The purpose of this study was to compare the use of antidepressants over 6 years between family caregivers providing high-intensity care and a matched control population using register-based data. Methods: The study includes all individuals, who received family caregiver’s allowance in Finland in 2012 (n = 29,846 females, mean age 66 years; n = 12,410 males, mean age 71 years) and a control population matched for age, sex, and municipality of residence (n = 59,141 females; n = 24,477 males). Information on purchases of antidepressants, including the number of defined daily doses (DDD) purchased, between 2012 and 2017 was obtained from the national drugs reimbursement register. Results: During the follow-up, 28.5% of female caregivers and 23.5% of the female controls used antidepressants, while the numbers for males were 21.1% and 16.4%, respectively. Adjusted for socioeconomic status, female caregivers used 43.7 (95% confidence interval 42.4–45.0) and their controls used 36.2 (35.3–37.2) DDDs of antidepressants per person-year. Male caregivers used 29.6 (27.6–31.6) and their controls used 21.6 (20.2–23.0) DDDs of antidepressants per person-year. Among female caregivers, the relative risk for use of antidepressants was similar (about 1.3) from 20 to 70 years, after which the relative risk declined. In male caregivers, the relative risk was highest (about 1.4–1.5) between 45 and 65 years. Conclusions: Family caregivers providing high-intensity care use more antidepressants and hence, are likely to have poorer mental health than the age-matched general population in virtually all age groups. However, the magnitude of the higher use varies as a function of age and gender.
Objectives: This study aimed to identify the methods used to determine the value of informal care provided to people living with dementia and to estimate the average hourly unit cost by valuation method. Methods: A literature search in MEDLINE Complete, CINAHL, PsycINFO, EconLit, EMBASE and NHS Economic Evaluation Database was undertaken. Following the screening of title, abstract, and full text, characteristics of eligible studies were extracted systematically and analyzed descriptively. The corresponding hourly cost estimates were converted into 2018 US dollars based on purchasing power parities for gross domestic product. Results: A total number of 111 articles were included in this review from 3106 post-deduplication records. Three main valuation methodologies were identified: the replacement cost method (n = 50), the opportunity cost approach (n = 36), and the stated preference method based on willingness to pay (n = 3), with 16 studies using multiple methods and 6 studies not specifying the valuation method. The amount of informal care increased as the condition of dementia progressed, which was reflected in the cost of informal care. The average hourly unit cost used to value informal care was US $16.78 (SD = US $12.11). Although the unit cost was approximately US $15 per hour when using the opportunity cost method and US $14 when using the stated preference method, the highest unit cost was obtained when using the replacement cost method (US $18.37, SD = US $13.12). Conclusions: Although costs of informal care should be considered when undertaking an economic evaluation or estimating the overall costs of dementia from a policy and priority-setting perspective, further research into applying consistent approaches to valuation is warranted.
Objectives: The average annual healthcare expenditure among elderly patients in Korea is increasing rapidly in indirect healthcare sectors, requiring an understanding of factors related to the use of both formal and informal caregivers. Objectives: This study analyzed the characteristics of caregiver use and caregiving costs among elderly patients hospitalized due to acute illness or exacerbation of chronic diseases. Methods: A total of 819 study participants were selected from the 2017 Korea Health Panel Study Data. Replacement costing methods were applied to estimate the hours of informal caregiver assistance received by elderly inpatients. Elderly inpatients’ predisposing, enabling, and need factors were studied to identify the relationship between caregiver uses, based on Andersen’s behavior model. A two-part model was applied to analyze the factors related to care receipt and to estimate the incremental costs of care. Results: Elderly inpatients who used tertiary hospitals (OR: 2.77, p-value < 0.00) and received financial support (OR: 2.68, p-value < 0.00) were more likely to receive support from a caregiver. However, elderly inpatients living alone were lesser to do so (OR: 0.49, p-value < 0.00). Elderly inpatients with Medicaid insurance (β:0.54, p-value = 0.02) or financial aid (β: 0.64, p-value < 0.00) had a statistically positive association with spending more on caregiving costs. Additionally, financial support receivers had incremental costs of $627 in caregiving costs than nonreceivers. Conclusions: This study presented significant socioenvironmental characteristics of formal and informal caregiver use and the related expenditures. Healthcare management plans that encompass multiple social levels should be implemented to ease the caregiver burden.
Objectives: Identify 2-4 factors sociodemographic, caregiving, or economic factors associated with cancer caregivers' mental health outcomes during hospice. Evaluate how financial well-being affects the mental health of cancer caregivers and discuss implications for policy and practice. Background: End-of-life caregiving is associated with poorer mental health which may impact bereavement. Research Objectives To examine the sociodemographic, caregiving, and economic characteristics of mental health among hospice family caregivers of cancer patients. Methods: Informal caregivers were purposively recruited from hospices from four states. Participants completed demographic, caregiving, and mental health survey items. The Medical Outcomes Social Support Survey (α=0.85), Zarit Caregiving Burden Inventory (α=0.89), PROMIS mental health subscale (α=0.80), Hospital Anxiety and Depression scale (anxiety- α=0.88; depression α=0.80), and the Positive Affect and Well-being Scale (α=0.94) were administered. Hierarchical linear regression models (base models: sociodemographic factors, final models: sociodemographic and caregiving factors) were generated in SPSS version 24 with significance set at p<0.05. Results: Data from 102 informal caregivers were analyzed. Participants had a mean age of 58.93 years (SD=14.24). Majority of participants were female (72.55%), spouses (51.96%), and non-Hispanic White (80.00%). Over 60% cared for patients for less than 2 years, 51.96% had less than a college degree, and 46.53% were not employed. Most (77.78%) described their financial situation as comfortable or more than adequate. Controlling for sociodemographic and caregiving characteristics, higher financial satisfaction (B=1.47), social support (B=0.05), and lower caregiving burden (B=-0.11) were associated with more positive overall mental health (R2=0.56, ΔR2=0.27, p<0.001). Younger age (B=-0.11) and higher caregiving burden (B=0.17) were associated with increased anxiety (R2= 0.46, ΔR2=0.15, p<0.001) while financial satisfaction (B=-1.26), lower social support (B=-0.04), and higher caregiving burden (B=0.16) were associated with depression (R2=0.47, ΔR2= 0.26, p<0.001). Less proximal caregiving relationship (child vs. spouse; other relationship vs. child; B=2.14), financial satisfaction (B=2.03), social support (B=0.10), and lower caregiving burden (B=-0.26) were associated with greater well-being (R2=0.48, ΔR2=0.27, p<0.001). Conclusion: Financial satisfaction remains a major factor of caregivers' psychological well-being even after controlling for other variables. Implications for Research, Policy, or Practice This study identifies subgroups of caregivers who may benefit from additional hospice support services.
Background: A series of policies aimed toward rational resource allocation of long‐term care have being actively discussed since the launch of the social long‐term care insurance in Shanghai, and it is important to take a societal perspective for informed decision‐making. Objectives: This study aims to explore factors that are associated with well‐being of informal caregivers in Shanghai, and to provide empirical evidence of application of an established well‐being valuation method to monetise informal caregivers' well‐being losses in a developing country. Methods: 310 informal caregivers of applicants for social long‐term care insurance in Shanghai were interviewed. Univariate and multivariate analyses were conducted to explore the associated factors with life satisfaction of the caregivers. The monetary values of an additional hour of caregiving with and without specification of care tasks were estimated by the well‐being valuation method. Results: Life satisfaction was consistently associated with monthly income, health status, and caring hours of the caregivers. The money needed to compensate one additional hour of caring per week was 12.58 CNY (0.3% of the monthly income), and 96.95 CNY (2.0% of the monthly income) for activities of daily living (ADL) tasks. Income, health status, and caregiving are significantly associated with well‐being of informal caregivers. Conclusions: Caregivers in relatively poor health condition and/or involved in more ADL tasks should be particularly considered in supporting policies in Shanghai.
In the article, the author discusses the challenges facing family caregivers in the U.S. and the alleged failure by the government to support their needs by citing her experiences in caring for her parents, who both suffered from cancer. Other topics include the lack of information on the various support groups, programs and services offered to vulnerable elders and their caregivers by the government and nonprofit organizations.
Aims: The aims of this study are to describe informal care activities and to estimate the societal cost of informal care of community-dwelling frail elderly people in Sweden. Methods: This study was performed within the frame of the TREEE project that included 408 frail elderly patients. At index hospitalisation (baseline), primary informal caregivers of the patients were provided with a questionnaire on informal care during a period of three months. Questions concerning other (secondary) informal caregivers were also included. A rough estimate of the total cost of informal care of frail elderly people in Sweden was obtained by combining data from this study with published data and official statistics. Results: In total, 176 informal caregivers responded, and 89% had provided informal care. The informal caregivers (primary and secondary) provided care for an average of 245 hours over three months. Taking care of the home was the dominating activity. In total, the mean cost of informal care was estimated to approximately 18,000 SEK (€1878) over three months, corresponding to an annual cost of approximately 72,000 SEK (€7477) per frail elderly person. The total annual societal costs of informal care of community dwelling frail elderly people aged 75 years and older in Sweden was estimated to be approximately 11,000 million SEK (€1150 million). Conclusions: The care of frail elderly people provided by informal caregivers is extensive and represents a great economic value. Although our calculations are associated with uncertainty, the size indicates that supporting informal caregivers should be a priority for society.
Background: Pediatric rheumatic disease (PRD) patients and their caregivers face a number of challenges, including the consequences of the PRD in patients and the impact on multiple dimensions of the caregivers’ daily lives. The objective of this study is to measure the economic, psychological and social impact that PRD has on the caregivers of Mexican children. Methods: This is a multicenter, cross-sectional study including primary caregivers of children and adolescents with PRD (JIA, JDM and JSLE) during April and November, 2019. A trained interviewer conducted the CAREGIVERS questionnaire, a specific, 28-item multidimensional tool validated to measure the impact on different dimensions of the lives of caregivers. Sociodemographic, clinical, and healthcare system data were collected for further analysis. Results: Two hundred participants were recruited (women 169, 84.5%, aged 38 [IQR 33–44] years); 109 (54.5%) cared for patients with JIA, 28 (14%) JDM and 63 (31.5%) JSLE. The healthcare system was found to be determinant on the impact of the disease. The emotional impact was higher in all the participants, regardless of the specific diagnoses. The social dimension showed significant differences regarding PRD, healthcare system, time to reach the center, presence of disability, active disease, cutaneous and systemic manifestations, treatment and partner. Financial and work impacts were more frequent in those caring for JSLE and less so in those with a partner. Family relationships changed in 81 caregivers (25 [12.5%] worsened and 56 [28%] improved). No variables affecting spirituality were found. For caregivers without a partner, the social networks impact increased. Conclusion: The influence of sociodemographic factors can be devastating on families with children with a PRD. These data will help physicians to identify the areas with the greatest need for intervention to achieve comprehensive care for caregivers and their patients.
Background: Spinal cord injury imposes high demands on family caregivers providing long-term care. Professional home care has been suggested for family caregivers’ relief. However, it is not clear whether professional home care can achieve the goal of relieving family caregivers. Objective: To quantify to what extent professional home care was used as a relief or replacement for family caregivers, using the case of care for persons with spinal cord injury in Switzerland. Design: Cross-sectional survey. Setting: Community setting in Switzerland. Participants: 717 family caregivers of persons with spinal cord injury living at home. Methods: Linear regression analyses were applied to investigate the relationship between care hours by family caregivers and the use of professional home care. Percentages of family caregivers that assisted in different tasks, and their time investment in the tasks, were contrasted between those with and without professional home care. Multiple logistic regression compared the likelihood of specific tasks being assisted by family caregivers dependent on whether professional home care was in place. The reasons given for not hiring more professional home care despite unmet needs were described with relative frequencies. Results: Adjusted for non-utilization, care hours of family caregivers had a positive, but insignificant, relationship with the hours of professional home care (Coef. = 0.21, 95% CI: –0.05–0.47). Assistance in activities of daily living was more frequent in family caregivers with professional home care. Eating and drinking assistance was provided by 47% of family caregivers with professional home care (versus 18% of those without professional home care). The most frequent task in instrumental activities of daily living was housekeeping (88% of family caregivers with professional home care and 83% of those without professional home care). After adjusting for characteristics of the caregivers and care recipients, significantly lower odds of assistance were found in washing feet (OR 0.39, 95% CI: 0.22–0.71), transferring to the toilet or bathtub (OR 0.53, 95% CI: 0.29–0.96), and climbing stairs (OR 0.26, 95% CI: 0.09–0.69). Higher odds of assistance were found in respiratory care (OR 2.22, 95% CI: 1.04–4.74) and bladder management (OR 1.99, 95% CI: 1.05–3.76) with professional home care in place. No significant difference was found in other tasks. Conclusion: Professional home care is a strong support to caregivers in high care demand situations, but it is not a replacement. The present study recommends further relief, empowerment, and acknowledgement for family caregivers.
Objective: Investigated clinical effectiveness and cost-effectiveness of a person-centred intervention for informal carers/caregivers of stroke survivors. Design: Pragmatic cluster randomised controlled trial (cRCT) with economic and process evaluation. Setting: Clusters were services, from a UK voluntary sector specialist provider, delivering support primarily in the homes of stroke survivors and informal carers. Participants: Adult carers in participating clusters were referred to the study by cluster staff following initial support contact. Intervention was the Carer Support Needs Assessment Tool for Stroke: a staff-facilitated, carer-led approach to help identify, prioritise and address the specific support needs of carers. It required at least one face-to-face support contact dedicated to carers, with reviews as required. Control was usual care, which included carer support (unstructured and variable). Outcome measures: Participants provided study entry and self-reported outcome data by postal questionnaires, 3 and 6 months after first contact by cluster staff. Primary outcome: 3-month caregiver strain (Family Appraisal of Caregiving Questionnaire, FACQ). Secondary outcomes: FACQ subscales of caregiver distress and positive appraisals of caregiving, mood (Hospital Anxiety and Depression Scale) and satisfaction with stroke services (Pound). The economic evaluation included self-reported healthcare utilisation, intervention costs and EQ-5D-5L. Randomisation and masking: Clusters were recruited before randomisation to intervention or control, with stratification for size of service. Cluster staff could not be masked as training was required for participation. Carer research participants provided self-reported outcome data unaware of allocation; they consented to follow-up data collection only. Results: Between 1 February 2017 and 31 July 2018, 35 randomised clusters (18 intervention; 17 control) recruited 414 cRCT carers (208 intervention; 206 control). Study entry characteristics were well balanced. Primary outcome measure: intention-to-treat analysis for 84% retained participants (175 intervention; 174 control) found mean (SD) FACQ carer strain at 3 months to be 3.11 (0.87) in the control group compared with 3.03 (0.90) in the intervention group, adjusted mean difference of −0.04 (95% CI −0.20 to 0.13). Secondary outcomes had similarly small differences and tight CIs. Sensitivity analyses suggested robust findings. Intervention fidelity was not achieved. Intervention-related group costs were marginally higher with no additional health benefit observed on EQ-5D-5L. No adverse events were related to the intervention. Conclusions: The intervention was not fully implemented in this pragmatic trial. As delivered, it conferred no clinical benefits and is unlikely to be cost-effective compared with usual care from a stroke specialist provider organisation. It remains unclear how best to support carers of stroke survivors. To overcome the implementation challenges of person-centred care in carers’ research and service development, staff training and organisational support would need to be enhanced.Trial registration numberISRCTN58414120.
We study the design of public long-term care (LTC) insurance when the altruism of informal caregivers is uncertain. We consider non-linear policies where the LTC transfer depends on the level of informal care, which is assumed to be observable, while children's altruism is not. Our policy encompasses two policies traditionally considered in the literature: topping up policies consisting of a transfer independent of informal care, and opting out policies entailing a positive transfer only if children fail to provide care. We show that both total and informal care should increase with the children's level of altruism. This is obtained under full and asymmetric information. Public LTC transfers, on the other hand, may be non-monotonic. Under asymmetric information, public LTC transfers are lower than their full information level for the parents whose children are the least altruistic, while it is distorted upward for the highest level of altruism. This is explained by the need to provide incentives to highly altruistic children. In contrast to both topping up and opting out policies, the implementing contract is always such that social care increases with informal care. © 2021 Canadian Economics Association
Background: Carers’ end-of-life caregiving greatly benefits society but little is known about the monetary value of this care. Aim: Within an end-of-life cancer setting: (1) to assess the feasibility and content validity of a post-bereavement measure of hours of care; and (2) to obtain a monetary value of this informal care and identify variation in this value among sub-groups. Design and setting: A census based cross-sectional survey of all cancer deaths from a 2-week period in England collected detailed data on caregiving activity (10 caregiving tasks and the time spent on each). We descriptively analyse the information carers provided in ‘other’ tasks to inform content validity. We assigned a monetary value of caregiving via the proxy good method and examined variation in the value via regression analysis. Results: The majority of carers (89.9%) were able to complete the detailed questions about hours and tasks. Only 153 carers reported engaging in ‘other’ tasks. The monetary value of caregiving at end-of-life was £948.86 per week with social and emotional support and symptom management tasks representing the largest proportion of this monetary valuation. Time of recall did not substantially relate to variation in the monetary value, whereas there was a stronger association for the relationship between the carer and recipient, carer gender and recipient daily living restrictions. Conclusion: The monetary valuation we produce for carers’ work is substantial, for example the weekly UK Carers’ Allowance only amounts to 7% of our estimated value of £948.86 per week. Our research provides further information on subgroup variation, and a valid carer time instrument and method to inform economic evaluation and policy.
Background: Many families coping with serious illness report experiencing financial burden, which negatively impacts coping and quality of life. Financial burden, however, is a complex construct that has been inconsistently operationalized in the literature. Aim: To review the available literature to identify, and describe the properties of, measurement tools or scales used to assess financial burden, including financial stress and strain, for families dealing with serious illness. Design: A systematic review. Data sources: Six databases were searched for articles published between 2006 and 2020. The review included studies in English, that reported empirical data, and used at least one measure of financial burden. To obtain a full copy of measures, an environmental scan was conducted. Results: A total of 31 measures were included. Only five of the total were designed for patient self-report, 23 of the total were designed for caregiver report. Whereas 11 measures relied on a single-item, 17 were multi-item. The remaining measures provided no information about target population and items. The most popular measures—based on Google Scholar citations—tended to only include one financial burden item. Given the complexity of financial burden, and its subjective and objective aspects, the utility of these single item measures remains questionable. Also, although patients may experience financial burden, there is a lack of patient-reported measures. Conclusion: To measure financial burden, we identified a need to develop and test multi-item measures, measures appropriate for patient populations and greater attention to the temporal aspects of self-report assessments.
Objective: The objective of the study is to assess the unmet needs of cancer caregivers and to identify the possible predictors of their supportive care needs in China. Methods: This multicenter, cross-sectional study enrolled 449 cancer patients' family caregivers' dyads. Patients provided general information and Karnofsky performance status (KPS); caregivers provided general information and completed a survey of Chinese version of the Supportive Care Needs Survey-Partners and Caregivers Scale. The independent samples t-test, one-way analysis of variance, and multiple stepwise regression were used to analyze the factors that influence the needs of caregivers. Results: A proportion of caregivers who had no needs were 5.6%. A proportion of caregivers with ≥ 5 moderate or high unmet needs and with ≥ 10 moderate or high unmet needs were 77.7% and 63.2%, respectively. Healthcare services and information needs and communication and relationship needs were the most prominent areas of caregivers' unmet needs. The item "Finding out about financial support and government benefits for you and/or the person with cancer" was the highest level of unmet needs at 78.6%. The level of unmet needs was related to the patient's physical function (KPS score), caregiver's educational levels, financial burden of healthcare, as well as the level of burden related to caregiving (working status, caring for others, caregiving experience, and total caregiving time). Conclusions: The level of unmet needs of family caregivers of cancer patients in China was higher. In clinical practice, more attention should be paid to family caregivers who take care of the patient with poor physical function, those who are highly educated, faced with higher financial burden of healthcare, and are currently working, as well as those who need to take care of others, spend more time caregiving, and have no caregiving experience.
Family caregiving is a shared experience across people of all age groups, cultures, incomes, and education levels in the United States. Roughly 41 million Americans are serving as a caregiver of an older adult. Many family caregivers, sometimes called informal or unpaid caregivers, are relatives, friends, and neighbors who provide ongoing assistance to adults aged 50 and older with health or functional needs.
Background: Unpaid family caregivers might suffer losses in income as a result of care provision. Methods: Here we used data from the baseline survey of the China Health and Retirement Longitudinal Study to assess the relationship between hours of weekly caregiving provided to grandchildren/parents/parents-in-law and individual’s monthly employment income. Our study sample comprised 3718 middle-aged Chinese adults who were of working age (45–60 years). For women and men separately, we used a likelihood-based method to determine a caregiving threshold in a two-stage Heckman selection procedure. Instrumental variables were used to rule out the endogeneity of caregiving hours. Results: Our analysis revealed a negative association between caregiving and income for women that depended on a caregiving threshold of 63 h per week. There was an absence of caregiving-income relationship among men. Conclusions: These results offer new insights into the opportunity costs of unpaid caregiving and support tailored policies to protect the financial well-being of female caregivers.
OBJECTIVES: Assess whether frequently‐used claims‐based end‐of‐life (EOL) measures are associated with higher ratings of care quality. DESIGN: Retrospective cohort study. SETTING/PARTICIPANTS: Deceased fee‐for‐service Medicare beneficiaries with cancer who underwent chemotherapy during July 2016 to January 2017 and died within 12 months and their caregiver respondents to an after‐death survey (n = 2,559). MEASUREMENTS: We examined claims‐based measures of EOL care: chemotherapy 14 days or more before death; inpatient admissions, intensive care unit (ICU) use, and emergency department (ED) visits 30 days or more before death; hospice election and the timing of election before death. Primary outcomes are family ratings of "excellent" care in the last month of life and reports that hospice care began "at the right time." Associations were assessed with logistic regression, adjusted by patient characteristics. RESULTS: Family rated EOL care as excellent less often, if within 30 days before death the cancer patient had inpatient admissions (1 hospitalization = 41.5% vs 51.5% none, adjusted difference −10.1 percentage points), ICU use (38.6% for any ICU use vs 47.4% none; adjusted difference −8.8 percentage points), ED visits (41.0% 1 visit vs 51.6% no visits; adjusted difference −10.6 percentage points), or elected hospice within 7 days before death. Among hospice enrollees, family more often reported that hospice began at the right time if it started at least 7 days before death (hospice 1–2 days before death 60.2% vs hospice 7–13 days 74.9%; adjusted difference +14.7 percentage points). CONCLUSIONS: Claims‐based measures of EOL care for cancer patients that reflect avoidance of hospital‐based care and earlier hospice enrollment are associated with higher ratings of care quality by bereaved family members.
Background: The aim of this study was (i) to analyze problems faced by informal caregivers in three areas of their life: health, work and finances, and family and social relationships, (ii) to investigate the main determinants of these problems, and (iii) to explore differences between men and women. Methods: The study population consisted of people aged ≥18 years living in a family home who were providing unpaid care to a dependent person in the same or another home and who were registered as caregivers with the Primary Health Care District of Granada or the Provincial Council of Gipuzkoa. Several logistic regression models were built to analyze the likelihood of caregivers experiencing health, work-related, or social problems as a result of their caregiving responsibilities. Results: Informal female caregivers were more likely to experience problems attributed to caregiving than their male counterparts, particularly in the areas of health and work. Additional factors associated with an increased likelihood of problems were low perceived social support, performance of ungratifying tasks, and fewer years as a caregiver. Conclusions: Informal caregivers in Spain face significant problems as a result of their caregiving duties, and the impact on men and women is different. Policies and interventions to mitigate the negative effects of unpaid caregiving should incorporate differential strategies to meet the specific needs of male and female caregivers in different caregiving contexts.
Background: This article examines the relationship between gender, class and unpaid care for children and elderly household members across twenty-five countries. Methods: Using the microdata files of the 2015–2017 Luxembourg Income Study, we demonstrate that household income quintile shapes the relationship between resident caregiving and a) women's diminished share of household income and b) the associated "wage penalty" women experience in paid employment, examining dual-headed heterosexual households and grouping countries at varying levels of GDP per capita. Results: Our analyses demonstrate that both eldercare and childcare have a negative impact on women's economic outcomes, yet the effects of both types of unpaid care vary across class. Overall, childcare has a larger impact for women in lower income households, while eldercare has a larger impact for women in higher income households. However, the wage penalties experienced by wealthier women due to either type of potential care responsibilities are considerably less than those experienced by women in poorer households. Conclusions: Together, these data suggest that unpaid resident caregiving has effects that are both highly gendered and highly classed, leading to intersectional disadvantages for women performing unpaid care within poorer households across countries, and with effects that, in some cases, are further amplified within low-GDP countries.
Background: In the United States, 8 out of 10 elders, 65 or older, have at least one chronic disease. Their care likely falls mostly to family members; many experience financial strain associated with providing that care. Informal caregiving saves the American healthcare system money. The economic value of family caregivers is estimated at $350 billion, exceeding the total amount spent by either Medicare ($342 billion) or Medicaid ($300 billion) The COVID-19 pandemic makes this issue even more relevant. Many of those recovering from this virus, whatever their age and previous health history, find it is a very long process. This study examined correlates of financial strain among 956 unpaid family caregivers using the framework of the stress process model. Method: The study utilized the caregiver survey data set from the 1999 National Long-Term Care Survey. Results: indicate that a caregiver's perceived overload had the largest effect on greater financial strain. Variations and dynamics in caregiver financial strain are particular to the caregiver's family relationship. Conclusion: Identifying correlates of caregiver financial strain can provide an important impetus for tackling the causes and providing effective interventions.
Objective: To explore the attitudes and experiences of family caregivers concerning their involvement in shared decision-making regarding people diagnosed with schizophrenia. Methods: This study used a qualitative descriptive design involving face-to-face semi-structured interviews. Both convenience and purposive sampling were used to recruit family caregivers until no new insights were generated (n = 15). An inductive thematic analysis method was used. Results: Primary results of analysis of the attitudes and experiences included four main themes with nine subthemes generated from the data: (1) feeling obligated; (2) playing functional roles: i) providing social and financial support, ii) acting as a liaison, and iii) overviewing treatment adherence; (3) Experiencing multiple challenges i) limited treatment options, ii) insufficient information at health services iii) traditional acceptance of authoritative advice; and (4) living under pressure: i) feeling exhausted, ii) being socially isolated and iii) worrying about the future. Conclusions: Due to their caregiving responsibilities, family caregivers facilitated shared decision-making in various ways. However, they perceived that their involvement was limited to practical tasks and attributed this to the lack of access and support for engagement, resulting in aggravated caregiving burden. Practice Implications: Family caregivers need to be recognized as partners and core stakeholders, to be involved in shared decision-making and better supported in caregiving. To achieve shared decision-making, decision aids are needed to support family caregivers for caregiving in collaborative care models.
Introduction: Many family carers, particularly those caring for people with dementia, report significant personal and social challenges associated with caring. The aim of this article is to identify the range of challenges experienced by family carers of people with dementia and to ascertain their preferences for various supports and services that address those challenges. Method: Three modified nominal group technique (NGT) focus groups were conducted with family carers of people with dementia. The NGT groups were conducted with 17 participants in two stages, focusing separately on personal and social domains. Family carers identified challenges and individually ranked preferences for both existing and new services and supports. Data analysis consisted of qualitative content analysis and summative scoring of individual rankings. Findings: Family carers identified the following personal-level challenges: needing a break, social isolation and relationship changes. Family carers’ combined preferences for personal-level supports and services to overcome these challenges were day care, family care support groups, short-term respite, long-break respite and social activities. Social challenges referenced by family carers included finances, rights and entitlements and stigma and awareness. Preferences for supports and services to address these social challenges were non–means-tested carer’s allowance, legal recognition, carer’s support grant, monthly wage and community awareness programmes. Conclusion: Participants ranked day care and non–means-tested carer’s allowance as their top priorities under personal and social headings. Increased government investment in these two areas would not only help to maintain family carers’ contributions to community-based care in dementia but would also facilitate social inclusion, social connectedness and economic sustainability.
Background: Care needs across countries depend on fertility rates, aging of the population, and the prevalence and causes of morbidity. Method/Disucussion: A care dependency ratio measures future care needs relative to the potential future supply of caregivers. Time-use survey data indicate that future unpaid caregivers will be equivalent to one- to two-fifths of the labor force. • Unless the gender division of family care work changes, women and girls will be providing four-fifths of future unpaid caregiving. To lessen the family's care burden, governments should invest in care programs, basic infrastructure, and measures to protect caregivers and recipients. The COVID-19 pandemic has caused millions of infections and deaths worldwide, forced schools to suspend classes, workers to work from home, many to lose their livelihoods, and countless businesses to close. Throughout this crisis, families have had to protect, comfort and care for their children, their elderly and other members. While the pandemic has greatly intensified family care responsibilities for families, unpaid care work has been a primary activity of families even in normal times. This paper estimates the future global need for caregiving, and the burden of that need that typically falls on families, especially women. It takes into account projected demographic shifts, health transitions, and economic changes in order to obtain an aggregate picture of the care need relative to the potential supply of caregiving in low-, middle- and high-income countries. This extensive margin of the future care burden, however, does not capture the weight of that burden unless the quantity and quality of care time per caregiver are taken into account. Adjusting for care time given per caregiver, the paper incorporates data from time-use surveys, illustrating this intensive margin of the care burden in three countries that have very different family and economic contexts—Ghana, Mongolia, and South Korea. Conclusions: Time-use surveys typically do not provide time data for paid care services, so the estimates depend only on the time intensity of family care. With this caveat, the paper estimates that the care need in 2030 would require the equivalent of one-fifth to two-fifths of the paid labor force, assuming 40 weekly workhours. Using the projected 2030 mean wage for care and social service workers to estimate the hypothetical wage bill for these unpaid caregivers if they were paid, we obtain a value equivalent to 16 to 32 percent of GDP in the three countries.
The authors present a method for estimating the value and cost effectiveness of the U.S. government initiative known as the American Jobs Plan, particularly regarding the program's allocation of funds targeted toward the expansion of access to home and community-based services (HCBS) for older citizens with disabilities.
The Scotland Act 2016 devolved powers over eleven social security benefits (including Carer's Allowance) providing Scotland with some, albeit limited, opportunity to differentiate itself in terms of welfare policy progressivity. The Carers (Scotland) Act 2016 set out the strategy for supporting those who limit their employment or educational enrolment due to the responsibility of caring for an adult or child with a health condition. Using a microsimulation of Scottish data from the Family Resource Survey, this article explores the potential impact, on income and poverty rates of carer households, of raising the level of CA by various amounts and by changing the eligibility criteria. It concludes that, while the Scottish Government's ambitions are too modest to fully support their progressive rhetoric, or to change the overall income inequality landscape, the reforms in targeted policy do make a substantial difference to the lived experience to carers in poverty and, by extension, to the receipt of that care.
In the United States, nearly thirty-four million individuals provide informal care for their adult family members each year. Adult care recipients experience positive emotional and health-related outcomes when cared for by relatives, but this responsibility also places significant stress on caregivers. The government should subsidize and encourage family adult care, not only because of these social impacts, but also because this care can reduce healthcare costs. Family caregivers help their relatives avoid expensive institutional care and are also cost-efficient providers of care due to their relationships with the care recipients. The tax code is an effective and politically palatable vehicle through which the government can provide this subsidy, despite some structural limitations. However, existing and recently proposed tax incentives do not adequately target the benefits associated with family caregiving. Therefore, this Note proposes a new two-part advanced refundable tax credit that will help the government reduce costs and enhance social benefits.
Background: Family caregivers of people at the end of life can face significant financial burden. While appropriate financial support can reduce the burden for family caregivers, little is known about the range and adequacy of financial support, welfare and benefits for family caregivers across countries with similarly developed health care systems. Aim: The aim is to identify and compare sources of financial support for family caregivers of people approaching the end of life, across six countries with similarly performing health care systems (Australia, Canada, Ireland, New Zealand, the United Kingdom and the United States). Design: A survey of financial support, welfare and benefits for end of life family caregivers was completed by 99 palliative care experts from the six countries. Grey literature searches and academic database searches were also conducted. Comparative analyses of all data sources documented financial support within and between each country. Results: Some form of financial support for family caregivers is available in all six countries; however the type, extent and reach of support vary. Financial support is administered by multiple agencies, eligibility criteria for receiving support are numerous and complex, and there is considerable inequity in the provision of support. Conclusion: Numerous barriers exist to the receipt of financial support, welfare and benefits. We identified several areas of concern, including a lack of clarity around eligibility, inconsistent implementation, complexity in process and limited support for working carers. Nonetheless, there is significant potential for policymakers to learn from other countries' experiences, particularly with regard to the scope and operationalisation of financial support.
This report shows the that majority of unpaid carers are unable to take sufficient breaks and also highlights an unfair and unequal provision of carers’ breaks services across England. The report is based on the results of a survey of over 1,000 carers in the UK and a freedom of information request to local authorities and clinical commissioning groups across England. Only 8 per cent of carers responding to the survey felt they had been able to take sufficient breaks. Almost half of respondents said they had not been able to take breaks even if they would have liked to, with 38 per cent f those not being able to afford replacement care. Carers who hadn’t taken a break from caring within the last year were also more likely to report that their mental or physical health had suffered as a result of caring. The Freedom of Information request also found wide variation in the amount of money local authorities and clinical commissioning groups are spending on carers’ breaks through the dedicated Better Care Fund. The report makes recommendations to improve access to breaks for carers, including increased funding for carers’ breaks through the Better Care Fund and for local authorities to make breaks a key part of their preventative work.
Cash‐for‐care (CfC) schemes are monetary transfers to people in need of care who can use them to organize their own care arrangements. Mostly introduced in the 1990s, these schemes combine different policy objectives, as they can aim at (implicitly or explicitly) supporting informal caregivers as well as increasing user choice in long‐term care or even foster the formalization of care relations and the creation of care markets. This article explores from a comparative perspective, how CfC schemes, within broader long‐term care policies, envision, frame, and aim to condition informal care, if different models of relationships between CfC and informal care exist and how these have persisted or changed over time and into which directions. Building on the scholarly debate on familialization vs. defamilialization policies, the paper proposes an analytical framework to investigate the trajectories of seven European countries over a period of 20 years. The results show that, far from being simply instruments of supported familialism, CfC schemes have contributed to a turn towards “optional familialism through the market,” according to which families are encouraged to provide family care and are (directly or indirectly) given alternatives through the provision of market care.
Background and aims: Since May 2011, over 23 000 caregivers of Veterans seriously injured on or after September 11, 2001 have enrolled in the Program of Comprehensive Assistance for Family Caregivers (PCAFC). PCAFC provides caregivers training, a stipend, and access to health care. The aim of this study is to describe the characteristics of caregivers in PCAFC and examine associations between caregiver characteristics and caregiver well-being outcomes.; Methods: We sent a web survey invitation to 10 000 PCAFC caregivers enrolled as of September 2015. Using linear and logistic regressions, we examine associations between PCAFC caregiver characteristics and caregiver outcomes: perceived financial strain, depressive symptoms (Center for Epidemiologic Studies Depression Scale [CESD-10]), perceived quality of Veteran's Veterans Health Administration (VHA) care, and self-reported caregiver health.; Results: We had complete survey data for 899 respondents. Since becoming a caregiver, approximately 50% of respondents reported reducing or stopping work. Mean time spent providing care was 3.8 years (median 3, IQR 1-5) with an average of 4.9 weekdays (median 5, IQR 5-5) and 1.9 weekend days (median 2, IQR 2-2). The mean CESD-10 score was 8.2 (median 7, 4-12), at the cutoff for screening positive for depressive symptoms. A longer duration of caregiving was associated with having 0.08 increase in rating of financial strain (95% CI, 0.02-0.14). Caregiver rating of the Veteran's health status as "fair" or better was a strong predictor of better caregiver outcomes, ie, self-reported caregiver health. However, higher levels of education were associated with worse caregiver outcomes, ie, lower global satisfaction with VHA care, higher CESD-10 score, and higher rating of financial strain.; Conclusions: Higher depressive symptoms among longer duration caregivers, coupled with high rates of reductions in hours worked, suggest interventions are needed to address the long-term emotional and financial needs of these caregivers of post-9/11 Veterans and identify subpopulations at risk for worse outcomes.
As our population ages, the ability to take time off to care for an ill family member or close friend without losing income or a job is a growing social, health, and economic issue for American families. Therefore, the need for paid family leave policies for workers with caregiving responsibilities is an important topic for employers and policymakers, in the clinical care of older adults, and at kitchen tables across the United States. Despite this growing need, paid family leave is not available to most workers, and there is no national paid family leave policy. Health care and social service providers have a role in ensuring that family members of their patients with a serious health condition or disability are aware of the potential availability of paid family leave benefits in the states and businesses that provide them. Building a better system of care for older adults means changes not only in health care settings and in long-term services and supports, but in workplaces too. This article describes the challenges faced by workers with family caregiving responsibilities, explains why paid family leave matters, indicates which states have adopted these protections, and reviews research on existing paid family leave policies. Finally, actions by clinicians and other stakeholders are offered to advance awareness about paid family leave benefits, including coverage for workers with care responsibilities for older people.
Caregivers in the United States face significant economic loss and stress to care for their families and friends during and after medical treatment, a fact that highlights a "gaping hole" in the U.S. health care system, Aaron Carroll, a professor of pediatrics at Indiana University School of Medicine, writes for the New York Times' "The Upshot." Another study published in Cancer in 2009 found that two-year caregiving costs exceeded $72,000 for lung cancer, $66,000 for ovarian cancer, $59,000 for lymphoma, and $38,000 for breast cancer. The U.S. Family and Medical Leave Act grants up to 12 workweeks of leave for employees to care for a family member with a health problem, "[b]ut that leave is unpaid," Carroll writes.
The article explores how public health systems in the U.S. can support older adults and informal caregivers. Topics discussed include how informal caregivers, an unpaid labor pool, are the cornerstone of long-term care in the U.S., forming a national caregiving strategy and ways these caregivers could be paid through medicaid, paid sick leave and providing tax credits.
Federal policies present roadblocks to caregivers, especially to their financial security. Federal Medicaid law limits payments for spousal caregiving and the Family and Medical Leave Act only provides for unpaid leave. The Social Security Administration gives no work credits for persons providing free caregiving. Federal Medicaid law requires all caregiving be provided voluntarily, but many state Medicaid programs are not in compliance. And, federal law requires that state Medicaid programs provide protections against spousal impoverishment for persons receiving Medicaid HCBS, but the federal requirement expires at the end of 2018.
The United States relies on uncompensated family caregivers to provide most of the long-term care required by older adults as they age. But such care comes at a significant financial cost to these caregivers in the form of lower lifetime earnings and diminished (or even no) Social Security retirement benefits, ineligibility for Medicare coverage of their healthcare costs, and minimal retirement savings. To reduce the impact of uncompensated caregiving on the intergenerational transmission of poverty, this paper discusses three possible mechanisms of compensating family caregivers: public payments, deemed wage credits under Social Security, and income tax incentives.
Family members are delivering unpaid care to loved-ones because direct payments are insufficient to hire staff, writes Belinda Schwehr.
Summary: This paper focuses on the impact of a personal budget – either in the form of a direct payment or managed personal budget – on the role of unpaid carers of older budget holders. Data were collected via postal survey of 1500 unpaid carers and semi-structured interviews with 31 carers. Findings: Unpaid carers played a central role in supporting older budget holders irrespective of the type of budget received. The allocation of a personal budget may have decreased the amount of ‘hands-on’ care they provided, enabling them to do different things for and with the person cared for, but most did not relinquish direct involvement in care provision. Both kinds of personal budget provided greater flexibility to juggle caring tasks with other roles, such as childcare or paid employment. However, carers supporting direct payment users did experience higher levels of stress. This seemed linked to the additional responsibilities involved in administering the direct payment. Carers seemed relatively unsupported by their local Adult Social Care Department: the survey found that only one in five said they had ever received a carer assessment. Application: The findings offer a detailed exploration of the impact of personal budgets on carers, suggesting that even in countries with relatively well-developed systems of support for carers such as England their impact remains overlooked. The paper may be of interest to social work practitioners, managers, academics and social work policy specialists working in countries that have, or are about to introduce, personal budgets or other forms of cash-for-care scheme.
With the continued implementation of the personalisation policy, Personal Budgets (PBs) have moved to the mainstream in adult social care in England. The relationship between the policy goals of personalisation and safeguarding is contentious. Some have argued that PBs have the potential to empower recipients, while others believe PBs, especially Direct Payments, might increase the risk of abuse. This paper provides empirical evidence about levels of uptake of PBs and safeguarding referrals in England based on in-depth analysis of national data at aggregate, local council level in England, covering 152 Councils. This is complemented by analysis of 2,209 individual referral records obtained from three purposively selected study sites. The aim is to explore whether available data could provide evidence of association between the uptake of PBs and safeguarding referrals. Analysis of the national dataset found no significant relationships between PB uptake and the level and type of alleged abuse. However, analysis of individual-level referral data, from the three selected sites did find some significant associations particularly with financial abuse; and found the main perpetrators of the alleged abuse to be home-care employees. The findings are discussed within the context of current policy and practice.
In the context of global population ageing, the reconciliation of employment and unpaid caring is becoming an important social issue. The estimation of the public expenditure costs of carers leaving employment is a valuable measure that is of considerable interest to policy makers. In 2012, the Personal Social Services Research Unit estimated that the public expenditure costs of unpaid carers leaving employment in England were approximately £1.3 billion a year, based on the costs of Carer's Allowance and lost tax revenues on forgone incomes. However, this figure was known to be an underestimate partly because it did not include other key benefits that carers who have given up work to care may receive. This paper presents a new estimate of the public expenditure costs of carers leaving employment. Key sources of information are the 2009/2010 Survey of Carers in Households, 2011 Census and 2015/2016 costs data. As well as Carer's Allowance, the estimate also now includes the costs of other benefits that carers leaving work may receive, namely, Income Support and Housing Benefit. The results show that the estimated numbers of carers who have left employment because of caring have increased from approximately 315,000 to 345,000. Due mainly to the inclusion of a wider range of benefits, the public expenditure costs of carers leaving employment in England are now estimated at £2.9 billion a year. The new estimate comprises £1.7 billion in social security benefits paid to people who have left their jobs because of unpaid caring, plus another £1.2 billion in taxes forgone on this group's lost earnings. The paper concludes that, if there was greater public investment in social care, such as "replacement care" to support carers in employment, and fewer carers then left employment, public spending on benefits would be lower and revenues from taxation would be higher.
The Financial Crisis of 2008 resulted in many western economies implementing cuts in health and social care. This systematic review provides a holistic picture of the impact of austerity policy on the lives of people with learning disabilities (LD) and the collateral effects on the people who support them. Our review suggests that in the current climate of economic austerity, available funding to support people with LD is no longer aligned to their care needs. Cuts in disability services have adversely affected the well-being both of people with LD and their informal carers. Individuals with LD have lost social support and are experiencing increased social isolation. Heightened demands on family carers’ time have negatively influenced their wider roles, including parental functioning, and labour market participation. Our review provides the foundations for further discourse and research on the effects of austerity on people with LD and their family carers.
Personal budgets aim to increase choice and independence for people with social care needs but they remain underused by people with mental health problems compared to other disability groups. The use of personal budgets may impact on families in a variety of ways, both positive and negative. This paper draws on interviews, undertaken in 2012-2013 with 18 family carers and 12 mental health service users, that explored experiences of family involvement in accessing and managing personal budgets for a person with mental health-related social care needs. The sample was drawn from three sites across England, with additional carers being recruited via voluntary sector networks. Our findings show that for many people with severe mental health needs who lack motivation and confidence to negotiate access to personal budgets, carers may provide the necessary support to enable them to benefit from this form of social care support. We illustrate the role carers may play in initiating, pursuing and maximising the level of support available through personal budgets. However, some carers interviewed considered that personal budget funding was reduced because of practitioners' assumptions about carers' willingness and ability to provide support. We also report perceived tensions between family carers and practitioners around appropriate involvement in decision-making. The study findings have implications for local authorities, practitioners and family carers in supporting the involvement of family carers in support for people with severe mental health problems.
This chapter focuses on systems of payment for social care in the Netherlands where an elaborate system was developed in the 1990s of 'personal budgets', supplied directly to care users and heavily regulated, which enabled them to pay relatives, friends and neighbours for appropriate help. Despite the efficiency and popularity of the PGB (Dutch Care Allowance or personal budget) the Dutch government is committed to reducing the scope and costs of the scheme. The chapter reviews the PGB in 2004, the impact of the subsequent changes and the PGB's uncertain future. Statistics supply background to the demographic context in the Netherlands with formal services assisting approximately half the heavily impaired population aged 55 or over and many fewer with less serious disabilities. The chapter moves on to policy on income, health, care and well being for older people and traces the origins of the PGB. The 2001 'Shifting Boundaries' study interviewed 15 budget holders and 14 helpers. Carers' situations and wages [...]
Elderly people with functional limitations are predominantly cared for by family members. Women – spouses and daughters – provide most of this care work. In principle, gender inequality in intergenerational care may have three causes: first, daughters and sons have different resources to provide care; second, daughters and sons respond differently to the same resources; third, welfare state programmes and cultural norms affect daughters and sons differently. In this paper, we address the empirical question whether these three assumed causes are in fact responsible for gender differences in intergenerational care. The empirical analyses, based on the Survey of Health, Ageing and Retirement in Europe (SHARE), reveal that parents in need are in fact more likely to receive care from daughters than from sons. Daughters are more responsive to the needs of their parents than sons and respond differently to the same resources. Gender inequality is highest in countries with a high level of intergenerational care, high public spending on old-age cash-benefits, a low provision of professional care services, high family obligation norms and a high level of gendered division of labour. Welfare state programmes reduce or increase gender inequality in intergenerational care by reducing or increasing the engagement of daughters in intergenerational care. In general, care-giving by sons is hardly influenced by social care policies.
Background: A respiratory distress symptom cluster has recently been identified in lung cancer associated with breathlessness, cough and fatigue, and the study reported here is part of a wider body of work being undertaken to develop a novel non-pharmacological intervention (NPI) for the management of this symptom cluster. The current paper reports the views of health care professionals (HCPs) involved with cancer care regarding the most appropriate ways of developing and delivering such a novel intervention.
Methods: Five focus groups, supplemented with additional telephone interviews, were conducted with a range of both community- and acute-based HCPs involved in symptom management for lung cancer patients. Participants included oncologists, palliative care consultants, specialist nurses, occupational therapists and physiotherapists. The focus groups were transcribed verbatim and analysed using NVIVO to support a framework analysis approach.
Results: The current delivery of NPIs was found to be ad hoc and varied between sites both in terms of what was delivered and by which health care professionals. The provision of NPIs within acute medical settings faced common problems concerning staffing time and space, and there was a recognition that the preference of most patients to make as few hospital visits as possible also complicated NPI teaching. Moreover, there may only be a small window of opportunity in which to effectively teach lung cancer patients a novel NPI as the period between diagnosis and the onset of severe symptoms is often short.
Discussion: The participants agreed that the novel symptom management NPI should be individually personalised to the needs of each patient and be available for patients when they become receptive to it. Moreover, they agreed that the intervention would be most effective if delivered to patients individually rather than in groups, outside acute medical settings where possible and closer to patient’s homes, should be delivered by an HCP rather than a trained volunteer or lay person and should involve informal carers wherever practicable.
In 2006 the Scottish Government provided just over £8 million to help 32 health and social care partnerships to develop telecare services. This paper presents a summary of the 2007-2008 evaluation of the Scottish Telecare Development. This evaluation focused on measuring overall program progress toward eight predefined Scottish Telecare Development objectives. Results indicate that the initial investment has resulted in significant savings to the health and social care sectors. Additionally, telecare provides opportunities to promote independence and improve the quality of life of service users and their informal carers. However, some caution needs to be taken in interpreting the findings as results are based on self-reported performance from partnerships, and many of the reported monetary ''savings'' are actually efficiency savings and are unlikely, in practice, to be cash-releasing.
Aims and objectives: To explore bereaved family carers' perceptions and experiences of a hospice at home service.
Background: The increasing demand for the development of home-based end-of-life services is not confined to the western world; such services are also emerging in resource-poor countries where palliative care services are developing with limited inpatient facilities. Despite this growing trend, studies show a variety of interrelated factors, with an emphasis on the availability of informal carers and their ability to cope, which can influence whether terminally ill patients actually remain at home. A hospice at home service was developed to meet patients' and families' needs by providing individually tailored resources.
Design: A qualitative study.
Methods: Data were collected by semi-structured, digitally recorded interviews from 20 family carers who had experienced the service. Interviews were transcribed verbatim and a thematic approach adopted for analysis.
Results: All participants reported a personal positive impact of the service. Family carers commented the service provided a valued presence, they felt in good hands and importantly it helped in supporting normal life.
Conclusions: The impact of an individualised, targeted, hospice at home service using dedicated, palliative care trained, staff, is perceived positively by family carers and importantly, supportive of those with additional caring or employment commitments.
Relevance to clinical practice: The emergence of hospice at home services has resulted in more options for patients and their families, when the increased amount of care a family member has to provide in these circumstances needs to be adequately supported, with the provision of a flexible service tailored to individual needs and delivered by appropriately trained staff.
The French system of social care policy for dependent older people is an allowance known as the Prestation Specifique Dependance (PSD) from January 1997 to December 2001 and subsequently the Allocation Personalisee a l'Automie (APA) from January 2002 for services or to pay a member of the family. The chapter covers demographic factors underlying this policy development with statistical tables, and the two principal stages of French social care policy, examining the impact of these on carers who may be either formal (paid) or informal (unpaid). The development in France of a policy relating to frail older people has been very slow with the political debate comprising four main issues - compulsory or optional insurance, funding and management, the relationship of the different welfare sectors and the relationship between the family, the market and the state. The development of the PSD and its characteristics and take-up rates are explored. The policy was much delayed provoking intense dissatisfaction from [...]
This paper considers cash for care as reflected in direct payments and the more recent development of individual budgets in England. While the momentum to roll out individual budgets gathers pace in England, Wales has embarked on a more cautious approach in wishing to evaluate the impact of individual budgets on social services. The paper identifies some of the far reaching implications of cash for care in general and individual budgets in particular, for service users, carers ‐ both paid and informal ‐ and for the social work profession. The policy incoherence in relation to risk and safeguarding is highlighted. This paper supports the approach currently adopted by the Welsh Assembly Government in relation to the ‘rolling out’ of individual budgets. The Assembly's 10‐year strategy for social services focuses on the rights of citizens and the needs of communities. This paper argues that fulfilling that vision should not be wholly contingent upon an unproven extension into the field of individual budgets.
This article investigates the impact of policy measures on the organisation of home-based care for older people in France, by examining the balance between formal and informal care and the redefinition of the initial familialist model. It focuses on the specific cash for care scheme (the Allocation personnalisée d’autonomie – Personalised allowance for autonomy) which is at the core of the French home-based care policy. The author argues that in a redefined context of ‘welfare mix’, the French public strategy for supporting home-based care in France is articulated around two major objectives, which can appear contradictory. It aims to formalise a professional care sector, with respect to the employment policy while allowing the development of new forms of informal care, which cannot be considered to be formal employment. The data collection is two-fold. Firstly, a detailed analysis was made of different policy documents and public reports, together with a systematic review of existing studies. Secondly, statistical analysis on home-based care resources were collected, which was not easy, as home-care services for older people in France are part of a larger sector of activity, ‘personal services’ (services à la personne). The article exposes three main findings. First, it highlights the complexity of the formalisation process related to the introduction of the French care allowance and demonstrates that formalisation, which facilitates the recognition of care as work, does not necessarily mean professionalisation. Second, it outlines the diversity of the resources available: heterogeneous professional care, semi-formal forms of care work with the possibility to employ a relative and informal family care. Finally, the analysis outlines the importance of the regulation of cash payments on the reshaping of formal and informal care and comments on its impact on the redefinition of informal caring activities.
A major issue in research, policy and professional practice is the social exclusion of carers, in particular carers for people with mental health problems. In order to address the issue of social exclusion from the perspectives of professionals, 65 participants were interviewed. The sample included directors, managers and senior staff from the social care, health and voluntary sectors. Respondents were asked to comment at length on the social exclusion of carers. Findings highlight four main types of exclusion: first, personal exclusions, including stigma; keeping mental health problems ‘a secret’; and taboos surrounding mental health care; second, social exclusions, such as isolation; narrowing of social networks; restrictions due to time commitments; exclusions relating to education, training, employment and leisure; and young carers; third, service exclusions involving carers being taken for granted and having difficulties with access to appropriate services; and fourth, financial or economic exclusions that lead to carers paying for care. This paper documents patterns of exclusion and draws out implications for research, policy and professional practice. In conclusion this paper also considers the ways in which professionals and services may better promote the social inclusion of carers for people with mental health problems in the future.
Increasing numbers of developed welfare states now operate cash-for-care schemes in which service users are offered cash payments in place of traditional social services. Such schemes raise concerns about the extent to which they include and support carers. This paper aims to explore some of these issues through an analysis of a cash-for-care initiative piloted in England in 2005–07: the Individual Budgets (IBs) pilot projects. The paper reports the findings of an evaluation of the impact and outcomes of IBs for carers through analyses of qualitative interviews with IB lead officers, carers' lead officers and carers of IB holders; and analyses of structured outcome interviews with carers of IB holders and carers of people in receipt of conventional social care services. The evaluation found that, despite their primary aim of increasing choice and control for the service user, IBs had a positive impact on carers of IB holders. The findings are important in that they have implications for the widespread roll-out of Personal Budgets in England and may also provide wider valuable lessons nationally and internationally about the tensions between policies to support carers and policies aimed at promoting choice and control by disabled and older people.
This chapter provides an overview of different models of financial support for informal carers (that is, the kin and close friends) of older people. These models reflect the institutional and cultural traditions of the broader societies and welfare states of which they are a part. The chapter first argues that the issue of paying informal carers needs to be understood from several different policy perspectives. It then outlines four models of providing financial support for informal care, illustrated with examples from specific countries. The different models are evaluated against a series of questions relating to sustainability; the implications for economic well-being and concepts of citizenship that derive from labour market participation; the balance between individual, family, and social rights and responsibilities; and the quality of care. Finally, the chapter argues that, in order to address these wider policy issues, a number of additional measures to paying informal carers of older people are required.
Describes how the Lancashire Dementia Research Group (LADRIG) has given people with dementia and their carers an active role in the development of research projects.
Objectives: To investigate the determinants of satisfaction in caregiving and to compare satisfaction in care-giving amongst carers of demented and non-demented mentally infirm elders; and, assess carer attitudes and concerns, and their implications on care in the community.; Design: Cross-sectional study of informal carers of the elderly referred to a psychogeriatric service, using a questionnaire investigating carer satisfaction (CASI), care-recipient dependency needs, carer burden (CADI), carer concerns and attitudes in relation to caregiving, and the 28-item GHQ.; Setting: Lancashire communities of Fleetwood, Thornton-Cleveleys, Poulton-Le-Fylde, and Over-Wyre.; Results: Carers achieved significant degrees of satisfaction in their role as care-givers; there was no significant difference in the degree of satisfaction gained by carers of the demented and non-demented. The mean CASI score, for carers of the demented and non-demented was 23(5.5) and 24.4 (5.7) respectively (mean difference -2.9; CI -4.6, 0.1; p=0.058). Dissatisfaction in care giving was determined by total burden (CADI) scores, and younger carer age. Emotional distress in carers was weakly inversely correlated with CASI scores (r=-0.21, p=0.042). Concerns expressed by carers, included desire for information on care recipient disability (39.5%) and fear of nursing/residential home placements (43%). Most carers had a generally positive attitude to care giving, in spite of significant degrees of burden to which they were subjected. Conclusions: Carer-related factors, particularly younger age, rather than dependency factors, were determinant of care giving satisfaction. Greater involvement of older persons in care giving should be encouraged, with younger persons assisting if care giving becomes overbearing. Carers require education on care-recipient disabilities and the benefits of care in formal care institutions.
For a long time, the international literature has described the Italian public system of home care for frail elderly people as underfunded and mostly cash-oriented; a system, thus, relying almost entirely on informal care provided by the family and, more recently, by migrant workers. Abroad and in Italy, most experts have long shared the expectation that, if and when, public expenditure devoted to home care was to increase, the outcome would be an expansion in the provision of services in kind. This study analyses how the provision of home care actually has changed in the last decade. The analysis reveals that indeed public expenditure has risen. However, while the system of home-care provision also has changed, it has done so in the opposite direction to that expected. In fact, most of the additional resources have funded an increase in the number of users of the companion payment [Indennità di Accompagnamento (IA)], a cash benefit of €487 per month. In this respect, the Italian welfare system is more cash-oriented than it was 10 years ago. This article discusses the reasons behind the increased uptake of the IA, namely: an increase in the needs and demands of older people; the traits of the Italian welfare system; and the peculiar features of the companion payment itself. The article then looks at why services in kind rose to a lesser degree, pinpoints the main reason as being based on the politics of social care at national level, and finally focuses on the challenges that the Italian home-care system has to face within the changed policy environment with respect to quality of care, carers’ conditions and support for users with high-level needs.
This chapter opens with the movement to long-term care benefits in Germany in 1994 with a two-tiered system of employment-related, contribution-based long-term care insurance (LTCI) and a last resort of tax-funded social assistance. The goals were to reduce the financial burden on the states and municipalities, lessen poverty for care clients, increase long-term care services, expand home- and community-based services and support informal caring, and to prevent or delay institutionalisation. The chapter looks at the methods in which the benefit design in the German system affects employment, and examines the social long-term care insurance scheme. A main characteristic is the choice of cash benefits and benefits in-kind, distinguishing the German LTCI from the long-term care systems in most other countries. The mixed-benefit design of the system considers the institutional framework, funding, beneficiaries and eligibility criteria, the benefits and the special features of the German system, which are an [...]
The aim of this section of a larger study was to identify the range of cues from which pain was inferred for a sample of residents with various levels of cognitive impairment in 15 UK nursing homes. Sixty-five nursing home staff and 36 informal carers of the 113 residents were interviewed. There was extensive use of body movements, facial expressions, and verbal and vocal cues and a considerable degree of interpretation of cues was used. There was little difference between the types of cue used by formal and informal carers, although informal carers tended to identify more of all types. There were differences in cues identified according to level of cognitive impairment, in particular, the interpretation of body movements. A simple model of the interaction between cognitive deficit, cue type and level of cue interpretation was proposed.
An evaluation was conducted of voluntary sector family support workers (FSWs) working with families of schizophrenia sufferers. FSWs completed a diary schedule and interviews were conducted with 15 co-professionals from the FSWs' multi-disciplinary teams and 62 carers from FSWs' caseloads. Carers' problems were assessed using the burden component of the Social and Behavioural Assessment Schedule and the Lancashire Quality of Life Profile. Carers were asked about the type of support received and their satisfaction. The findings revealed the considerable pressures of caring and highlighted the value perceived by both carers and coprofessionals of the FSW as a counselling, listening, information and advocacy resource. The diary study revealed that FSWs spend 40% of their time providing emotional and/or practical support. The impact of this was suggested by the superior ratings of quality of life and lower burden scores among carers with whom the FSW had longer-term involvement.
Italy has one of the highest percentages of older people in Europe, a trend likely to increase faster than elsewhere alongside greater disability. Family support is also weaker through demographic developments and greater female participation in the labour market, and public policies for frail older people are underdeveloped with wide regional variations. The national scheme, the indemnita di accompagnamento (companion payment), is paid to approximately 7.3% of severely disabled people over 65 based on assessment of need. Private care is much greater than public provision of personal services, mainly supplied by individual workers rather than organisations. 'Routed wages' comprise the companion payment of which there are further details relating to funding, target, admittance, purpose and amount, and also local payments for care supplied by regional authorities and municipalities, with the same details listed. Local payments are increasingly widespread, mainly in the north and centre of Italy. There are several [...]
Recent shifts toward individual choice and consumer-directed practices largely conflict with traditional expectations of familial obligation and informal caregiving. The research reported on in this paper aimed to understand how practitioners’ perspectives of spousal caregiving obligations impact on choice in rural communities. Seven focus groups were conducted in rural and outer regional areas of North East Victoria, comprising 42 practitioners who work with older couples who reside in the community. Thematic analysis revealed practitioners’ personal values and constraints of the direct practice environment impact on the experience of choice for older Australians. This discussion considers the problematic nature of choice in policy and practice for older people and their caregivers in light of these findings.
Context: In response to increasing care needs, the reform or development of long-term care (LTC) systems has become a prominent policy issue in all European countries. Cash-for-care schemes—allowances instead of services provided to dependents—represent a key policy aimed at ensuring choice, fostering family care, developing care markets, and containing costs.
Methods: A detailed analysis of policy documents and regulations, together with a systematic review of existing studies, was used to investigate the differences among six European countries (Austria, France, Germany, Italy, the Netherlands, and Sweden). The rationale and evolution of their various cash-for-care schemes within the framework of their LTC systems also were explored.
Findings: While most of the literature present cash-for-care schemes as a common trend in the reforms that began in the 1990s and often treat them separately from the overarching LTC policies, this article argues that the policy context, timing, and specific regulation of the new schemes have created different visions of care and care work that in turn have given rise to distinct LTC configurations.
Conclusions: A new typology of long-term care configurations is proposed based on the inclusiveness of the system, the role of cash-for-care schemes and their specific regulations, as well as the views of informal care and the care work that they require.
The government once called carers unsung heroes and promised to legislate to improve their lives. Reports on how many of the measures it has taken have been welcomed but extra cash to ease the acute financial difficulties many endure is still in short supply.
This focus of this article is a qualitative, evaluative study of three Crossroads young carers projects. Focus group discussions took place with 24 young people aged 11-16 years. Data were analysed using a thematic content analysis approach. The themes of the research were: experiences of being a young carer, peer support, opportunities for time out and purposeful activities. The personal characteristics of the participants give rise to a number of worrying conclusions, that relatively young people were found to be undertaking primary caring roles over long periods of time. However, the groups were found to provide opportunities for young carers to experience a positive environment, participate in purposeful activities and have the chance to develop new friendships. Nevertheless, the literature suggests that provision of such projects is inadequate and under-resourced, which may disadvantage further a group of young people who are known to come from lower income families.
The range of government initiatives which involve carers is extremely broad, with the National Carers Strategy alone containing over 70 pledges. The Strategy takes a holistic approach, referring to almost every aspect of a carer's life from transport to work, from care to housing and from pensions to health. The breadth of issues covered in the Strategy means that it can make only passing reference to significant policy initiatives. This article explores these care, work and cash initiatives to examine in more depth whether this apparent coherence stand up to closer scrutiny.
Feminism rather than gerontology characterises this book but the substantive issues lie within the field of gerontology and the shift in the boundaries of paid and unpaid work at the end of the twentieth and in the early twenty-first centuries. Cash payments for care are a possible method of ensuring care and citizenship. The chapters raise issues of long-term care funding, the positions of users, caregivers and care workers in the care relationship, how care work could be professionalised and support for informal carers. The first chapter summarises the issues involved in the new systems which emerged in the 1990s and the impact of funding regimes, together with the literature which appeared reviewing these policy developments and the policy context. Increased longevity and changes in family structure diminished the number of potential caregivers, particularly in the EU and North America. Containing costs of social care through the funding of retirement pensions and long-term care forms the second major issue [...]
Children’s well-being is linked to a complex web of factors including the child’s personality, inherent protective mechanisms, family relationships, social capital, and economic status. Young carers are particularly at risk from poor mental health outcomes and low well-being. In this study the impact of immersive activities in nature on the well-being of 8 young carers (3 girls and 5 boys; aged 9–13 years) was explored. The immersive woodland activities included practical skills such as fire making, cooking, and using tools as well as team building and activities to help build trust. A mixed method, pre-test/post-test approach was undertaken using Emotional Literacy Checklists and interviews, poems and discussion. There were measurable improvements—specifically in motivation and self-awareness—in the young carers’ emotional literacy as reported by the parents and teachers. The well-being indicators that were referenced most frequently by parents and teachers related to the children’s social relationships and their development as individuals. The children reported changes related to social, physical, and “natural connection” well-being.
Payments for care, by which people in need of long-term care directly employ care workers, have been introduced in many European countries. In The Netherlands, care dependants are allowed to use these payments to hire relatives to perform care tasks. Care-givers who are employed by their relatives are in a hybrid position, because they are contracted as employees in the informal setting of a family home and its affective care relationships. This paper reports a qualitative study of relatives' experiences of payments for care and how these affect their care-giving. In-depth interviews were undertaken with 17 paid carers: they were asked to respond to three fictional vignettes of contrasting care trajectories. It was found that the cash nexus had mixed and partly contradictory implications for the paid care-givers. On the one hand, the care-givers were satisfied with the arrangement, as the payments recognised and raised their status as carers, and were seen as reward and reciprocation for their care work. Some carers had found that the contract helped manage strained relationships, by enabling a clearer differentiation of care tasks from affection. On the other hand, some who regarded themselves as employees and saw their role as equivalent to formal carers felt a greater obligation to provide high-quality care, and found that they were thanked less often and received fewer tokens of gratitude.
Easy read version of the Government White Paper which sets out their vision for a reformed care and support system in England. The White Paper aims to ensure people are kept more independent; have choice and control over their own care and support; can live their lives the way they want and can keep their human rights. Using bullet points this easy read version describes what is meant by care and support; looks at paying for care and support; the problems with care and support at the moment; and how care and support can be made better.
Background: Dying at home is the preference of many patients with life-limiting illness. This is often not achieved and a key factor is the availability of willing and able family carers.
Aim: To elicit family carers’ views about the community support that made death at home possible.
Design and setting: Qualitative study in East Devon, North Lancashire, and Cumbria.
Method: Participants were bereaved family carers who had provided care at the end of life for patients dying at home. Semi-structured interviews were conducted 6–24 months after the death.
Results: Fifty-nine bereaved family carers were interviewed (54% response rate; 69% female). Two-thirds of the patients died from cancer with median time of home care being 5 months and for non-cancer patients the median time for home care was 30 months. An overarching theme was of continuity of care that divided into personal, organisational, and informational continuity. Large numbers and changes in care staff diluted personal continuity and failure of the GPs to visit was viewed negatively. Family carers had low expectations of informational continuity, finding information often did not transfer between secondary and primary care and other care agencies. Organisational continuity when present provided comfort and reassurance, and a sense of control.
Conclusion: The requirement for continuity in delivering complex end-of-life care has long been acknowledged. Family carers in this study suggested that minimising the number of carers involved in care, increasing or ensuring personal continuity, and maximising the informational and organisational aspects of care could lead to a more positive experience.
Presents an easy read guide to obtaining direct payments and choosing a carer. A Direct Payment is a cash payment from a Local Authority, to enable people to purchase their own services. The power to make Direct Payments is given to Local Authorities under the Community Care (Direct Payments) Act 1996, which came into force on the 1st April 1997. Guidance to accompany the Act specifically included people with a learning disability.
Providing substantial amounts (particularly over 20 hours a week) of care to a disabled or elderly relative or friend is associated with reduced labour market participation, poverty and adverse psychological and physical health. Many countries have introduced “cash for care” measures. Sometimes their primary objective is to provide financial support for the older or disabled person to help meet the additional costs of needing care. In other instances “cash for care” aims at offering consumer-style choice to older and disabled people. In such instances, benefitting carers, if at all, is a secondary aim. Moreover, these measures differ widely in terms of target group, eligibility criteria, interactions with formal care services, payment levels and whether they are means-tested. Their impact on carers also varies, depending on local labour markets, the availability of formal long-term care services, and, critically important, social attitudes towards the roles of families (and women within families) in caring for older and disabled people. This article provides a critical overview of the main models.
OBJECTIVES: To compare the burden of supporting demented and non-demented mentally infirm elders in an English community; determine the prevalence of emotional distress in carers and to investigate the relationship between carer well being and duration of care giving.
DESIGN: Cross-sectional study of informal carers of the elderly referred to a psychogeriatric service, using a questionnaire investigating carer socio-demography, carer-dependant interpersonal relationship in relation to care giving and care-recipient dependency needs using a modified version of the CADI; and, the 28-item GHQ.
SETTING: Lancashire communities of Fleetwood, Thornton-Cleveleys, Poulton- Le-Fylde and Over-Wyre.
RESULTS: Ninety one (72%) carers of the elderly mentally infirm participated in the study. Carers (n = 48) of the demented experienced significantly more burden, including psychological and physical health problems than carers (n = 43) of the non-demented (P = 0.001). The prevalence of emotional distress in all carers was 42% (dementia supporters = 56%, non-dementia supporters = 26%). Emotional distress in supporters was directly related to the degree of difficulties (particularly lack of private time, loss of control in caregiving tasks, patient behavioural problems) experienced in care giving, and, the degree of patient dependency needs. Carer/patient interpersonal relationship tended to worsen as care giving progressed; however, no significant association was established between duration of care and emotional distress in carers. Out of 51 carers receiving respite admission services, six (12%) considered such admissions as additional burden.
CONCLUSIONS: Carer burden, including psychological and physical health concerns, was comparatively greater in carers of the demented than in carers of the non-demented. Respite care services although beneficial to most care givers, may constitute further burden to some. Factors accounting for these observations are explained. To ameliorate carer burden, measures enabling greateravailability of private time, and, improving care giving skills, should be encouraged.