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Care costs

The following resources examine the costs of caring and the economic impact of care.

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Financial Challenges of Cancer for Adolescents and Young Adults and Their Parent Caregivers

This study examined the financial impact of cancer and the use of income support in adolescents and young adults (AYAs) with cancer and their parent caregivers. As part of a national Australian study exploring the psychosocial impacts of cancer, 196 AYAs ages 15 to 25 years, six to 24 months from diagnosis, and 204 parent caregivers from 18 cancer sites were surveyed. Logistic regression and chi-square analyses were conducted to assess the influence of clinical and sociodemographic variables on financial status. Qualitative responses were coded, and key themes were identified using thematic analysis. The findings indicate that more than half of AYAs and parents reported financial issues as a consequence of AYA cancer. Financial issues resulted from direct medical costs, associated costs from treatment, and indirect costs from loss of income. AYAs and parents reported that it was important for them to receive income support, both during and after cancer treatment. However, large proportions of those who reported needing income support had difficulty accessing it. AYAs and their families are substantially financially disadvantaged by cancer, many for a prolonged time. Patient- and family-centered assessments and interventions are required to reduce the financial burden of AYA cancer. 

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The Association between Poverty and Family Financial Challenges of Caring for Medically Complex Children

More than 500,000 children in the United States live with medical complexity. Their families assume responsibility for care and are directly affected by the associated financial costs. In this retrospective, nonexperimental study of children with medical complexity (CMC) and their families, greater than 50% of families experienced financial challenges and left employment to care for CMC. Poverty level was significantly related to financial challenges. Considerations for including family financial challenges into clinical practice, nursing administration, and health policy are offered.

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Family support and family and child-related outcomes among families impacted by disability in low- and middle-income countries: A scoping review

There is a growing interest in understanding the relationship between family support and family or child-related outcomes in high-income countries. However, this has received little attention in low- and middle-income countries. The purpose of this review was to explore the relationship between family support and family and child-related outcomes among families affected by disability in low- and middle-income countries. We conducted a scoping review of five databases using search terms related to 'family', 'support', 'child', and 'disability'. A total of 13 articles met the inclusion criteria. Families of children with disabilities received most of their support from informal sources (e.g. immediate family members, friends, and parents support groups). Parental stress was most often evaluated as the family outcome and was negatively linked to emotional support and childcare assistance from immediate family members. Movement and mobility therapy offered by rehabilitation professionals was found to improve children's walking patterns. Positive attitudes from community members were key facilitators to participation of children with disabilities in social activities. The review calls for urgent attention to research in low- and middle-income countries, particularly the extent of support families are receiving from government-led support systems.

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Challenges, priorities, barriers to care, and stigma in families of people with autism: Similarities and differences among six Latin American countries

Lack of access to services and support is an important issue for people with autism, but in low- and middle-income countries there is a lack of data on this problem. The aims of this study were to describe the challenges and priorities, identify barriers to care, and map stigma among families of individuals with autism in Latin America. This survey was undertaken by the Red Espectro Autista Latinoamerica network, a coalition of researchers/clinicians from six Latin American countries; it comprised 2942 caregivers of children with autism from Brazil, Argentina, Chile, Uruguay, Venezuela, and the Dominican-Republic, who completed the Spanish/Portuguese version of the Caregiver Needs Survey. The survey showed that the main priorities were greater community awareness and improvements in education. The main barriers to care were waiting lists (50.2%), treatment costs (35.2%), and lack of specialized services (26.1%). Stigma experienced by families was frequent: one-third reported feeling discriminated against and helpless for having a child with autism, 48.8% reported some type of financial problem, 47.4% had to reduce work hours, and 35.5% had to stop working because of their child's autism. This survey describes the main needs/challenges faced by individuals with autism in Latin America, helping to build data-driven strategies at a national/regional level. Approximately 6 million individuals with autism spectrum disorder live in Latin America. In order to strengthen autism spectrum disorder research collaborations and awareness in the region, the Latin American Autism Spectrum Network (Red Espectro Autista Latinoamerica) was constituted in 2015, comprising researchers and clinicians from the following six countries: Brazil Argentina, Chile, Uruguay, Venezuela, and the Dominican Republic. This first multisite study from the Red Espectro Autista Latinoamerica network aims to describe the challenges and priorities to identify barriers to care and to map stigma among families of individuals with autism spectrum disorder living in Latin America. A total of 2942 caregivers from these six countries completed an online survey showing that the main priorities were greater community awareness and improvements in the educational system for individuals with autism spectrum disorder. In addition to that, the main barriers to care were related to lack of structure, mainly waiting lists (50.2%), high treatment costs (35.2%), and lack of specialized services (26.1%). Stigma experienced by families was frequent: one third reported feeling discriminated against and helpless for having a child with autism spectrum disorder. Also, 48.8% of the caregivers declared financial problems, 47.4% of them had to cut down work hours, and 35.5% had to leave their jobs because of their child's autism spectrum disorder. This is a pioneer study providing a description of the needs and challenges faced by families affected by autism spectrum disorder in Latin America, helping to build data-driven strategies at the national and regional levels. 

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Health care and societal costs of the management of children and adolescents with attention-deficit/hyperactivity disorder in Spain: a descriptive analysis

Background: Attention-deficit/hyperactivity disorder (ADHD) is a common neurodevelopmental condition in childhood (5.3% to 7.1% worldwide prevalence), with substantial overall financial burden to children/adolescents, their families, and society. The aims of this study were to describe the clinical characteristics of children and adolescents with ADHD in Spain, estimate the associated direct/indirect costs of the disorder, and assess whether the characteristics and financial costs differed between children/adolescents adequately responding to currently available pharmacotherapies compared with children/adolescents for whom pharmacotherapies failed.

Methods: This was a multicenter, cross-sectional, descriptive analysis conducted in 15 health units representative of the overall Spanish population. Data on demographic characteristics, socio-occupational status, social relationships, clinical variables of the disease, and pharmacological and non-pharmacological treatments received were collected in 321 children and adolescents with ADHD. Direct and indirect costs were estimated over one year from both a health care system and a societal perspective.

Results: The estimated average cost of ADHD per year per child/adolescent was €5733 in 2012 prices; direct costs accounted for 60.2% of the total costs (€3450). Support from a psychologist/educational psychologist represented 45.2% of direct costs and 27.2% of total costs. Pharmacotherapy accounted for 25.8% of direct costs and 15.5% of total costs. Among indirect costs (€2283), 65.2% was due to caregiver expenses. The total annual costs were significantly higher for children/adolescents who responded poorly to pharmacological treatment (€7654 versus €5517; P = 0.024), the difference being mainly due to significantly higher direct costs, particularly with larger expenses for non-pharmacological treatment (P = 0.012).

Conclusions: ADHD has a significant personal, familial, and financial impact on the Spanish health system and society. Successful pharmacological intervention was associated with lower overall expenses in the management of the disorder.

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The Lived Experience of Parents of Children with Special Healthcare Needs on Public and Private Insurance: A Phenomenological Study

Due to recent advances in medical technology, the number of children with special healthcare needs (CSHCN) is steadily growing in the United States. CSHCN comprise more than 40% of overall healthcare costs nationwide, even though this group is only comprised of 16% of the U.S. child population. There are significant differences between private and public health plans in terms of cost, adequacy, and parent satisfaction. As an added benefit, some public and private health insurance plans offer nursing care coordination (or nursing case management) services. The purpose of this study was to understand the experiences of parents of CSHCN enrolled in public and private insurance with or without a nurse care coordinator assigned. A phenomenological approach was used. One-to-one semi-structured interviews were conducted with 16 participants. Colaizzi’s (1978) eight steps of data analysis was the selected methodological interpretation. Five themes emerged from this study: Struggle with Self- Preservation, Abandonment and Isolation, Self-Reliance and Advocate, Interdependence, and Lifeline. These study findings highlighted the major differences with parents navigating their child’s health insurance. These differences were dependent on the type of insurance and sources of support available. The experience of parents with a nurse care coordinator differed from parents without a nurse. Parents of CSHCN enrolled in public insurance with a nurse care coordinator considered the nurse to be a primary source of support. These nurses were instrumental in solving problems with the public health plan. On the contrary, parents with CSHCN enrolled in private insurance without a nurse care coordinator carried this additional burden. There were also noticeable differences in parents’ satisfaction with the adequacy and cost of their child’s health insurance. Parents of CSHCN enrolled in private insurance voiced dissatisfaction with higher costs associated with their child’s plan. Meanwhile, parents of CSHCN enrolled in Medicaid expressed that out-of-pocket expenses were covered. Results from this study can be used to make policy changes by insurance companies. Incorporating nursing care coordination not only results in healthcare savings for the health plan but improved health outcomes for its members as well.

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Direct and indirect costs of families with a child with acute lymphoblastic leukaemia in an academic hospital in China: a cross-sectional survey

Objectives: To estimate the direct and indirect costs in families with a child with acute lymphoblastic leukaemia (ALL) in China.

Design: A single-site, cross-sectional survey of primary caregiver of a child with ALL was performed.; Setting and Participants: We analysed the total costs incurred on the completion of the first three-phase treatment (induction, consolidation and intensification), which requires intensive hospitalisation. Eligible patients were (1) diagnosed with ALL between 2010 and 2012 at Shanghai Children's Medical Center (SCMC), (2) aged 0-14 years at diagnosis and (3) completed the first three-phase treatment at SCMC. The data were collected between October 2014 and December 2014.

Outcome Measures: We decomposed the total costs into three categories: (1) direct medical costs, which were further divided into outpatient and inpatient costs; (2) direct non-medical costs, which referred to expenses incurred in relation to the illness; and (3) indirect costs due to productivity loss.; Results: A total of 161 patients were included in the study. Direct medical costs accounted for about 51.7% of the overall costs, and the rest of 48.3% of the total costs were attributed to direct non-medical costs and indirect costs. Regarding families with different household registration type (rural vs urban), the total costs were significantly different between the two groups (US $ 36 125 vs US $ 25 593; p=0.021). Specifically, urban families incurred significantly larger indirect costs than rural families (US $ 12 343 vs US $ 4157; p=0.018). Although the direct non-medical costs were not significantly different, urban families spent more money on hygiene cleaning products and auxiliary treatment equipment (p=0.041) and gifts and treats (p=0.034) than rural families.

Conclusions: The financial burden faced by the Chinese families with a child with ALL was tremendous, and the distributions of costs among the three categories were different between urban and rural families. (© Author(s) (or their employer(s)) 2019. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

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The economic costs and its predictors for childhood autism spectrum disorders in Ireland: How is the burden distributed?

Autism spectrum disorders are associated with a substantial economic burden; although little is known about the relationship between state and family out-of-pocket expenditure. The objective of this study is to estimate the societal cost of childhood autism spectrum disorders and explain the variation in costs between state and family out-of-pocket expenditure. A bottom-up prevalence based cost-of-illness methodology was implemented using data from a combination of multiple convenience samples in Ireland of 195 parents of 222 children aged between 2 and 18 years of age with a clinically diagnosed autism spectrum disorder collected in 2014/2015. The findings show the average annual cost per child for families amounted to euro28,464.89 related to private autism spectrum disorder services, lost income and informal care. By comparison, annual state expenditure per child on autism spectrum disorder-related health, social and educational resources was euro14,192. Regression analyses indicate that autism spectrum disorder severity is significantly associated with higher out of pocket expenditures but not state health expenditures. The results suggest that parents are central to meeting the needs of young people with autism spectrum disorders in Ireland. Policy implications of these findings suggest that significant investment and commitment is needed to address the needs of individuals living with autism spectrum disorders and their families.

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Family-Provided Health Care for Children With Special Health Care Needs

Background and Objectives: Many children with special health care needs (CSHCN) receive health care at home from family members, but the extent of this care is poorly quantified. This study's goals were to create a profile of CSHCN who receive family-provided health care and to quantify the extent of such care.

Methods: We analyzed data from the 2009-2010 National Survey of Children with Special Health Care Needs, a nationally representative sample of 40 242 parents/guardians of CSHCN. Outcomes included sociodemographic characteristics of CSHCN and their households, time spent by family members providing health care at home to CSHCN, and the total economic cost of such care. Caregiving hours were assessed at (1) the cost of hiring an alternative caregiver (the "replacement cost" approach), and (2) caregiver wages (the "foregone earnings" approach).

Results: Approximately 5.6 million US CSHCN received 1.5 billion hours annually of family-provided health care. Replacement with a home health aide would have cost an estimated $35.7 billion or $6400 per child per year in 2015 dollars ($11.6 billion or $2100 per child per year at minimum wage). The associated foregone earnings were $17.6 billion or $3200 per child per year. CSHCN most likely to receive the greatest amount of family-provided health care at home were ages 0 to 5 years, were Hispanic, lived below the federal poverty level, had no parents/guardians who had finished high school, had both public and private insurance, and had severe conditions/problems.

Conclusions: US families provide a significant quantity of health care at home to CSHCN, representing a substantial economic cost. 

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Trajectories of poverty and economic hardship among American families supporting a child with a neurodisability

Background: Caring for a child with a neurodisability (ND) impacts the financial decisions, relationships and well-being of family members, but evidence on the economic trajectories of families throughout the life course is missing.

Methods: Using data from the Panel Study of Income Dynamics, we tracked the families of 3317 children starting 5 years before childbirth until the child reached 20 years of age. We used regression and latent growth curve modelling to estimate trajectories of poverty and economic hardship over time.; Results: Families with a child with an ND had higher rates of poverty and economic hardship prior to childbirth and persistently over time. Analysis uncovered five latent trajectories for each indicator. After controlling for family and caregiver characteristics that preceded the birth of the child, raising a child with an ND was not associated with a unique trajectory of poverty. Families raising a child with an ND were however more likely to experience persistent economic hardship.

Conclusions: The study establishes descriptive evidence for how having a child with an ND relates to changes in family economic conditions. The social and economic conditions that precede the child's birth seem to be driving the economic inequalities observed later throughout the life course. 

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Economic burden, work, and school productivity in individuals with tuberous sclerosis and their families

Aims: Tuberous sclerosis complex (TSC) is a multi-organ autosomal-dominant, genetic disorder with incomplete penetrance. The multiple manifestations of TSC and impacts to numerous organ systems represent significant disease, healthcare, and treatment burden. The economic and employment burden of the disease on individuals and their families is poorly understood. This study assessed the cost of illness and work and school productivity burden associated with TSC in a cross-sectional web-survey sample.

Materials and Methods: Eligible TSC individuals and caregivers were invited through the Tuberous Sclerosis Alliance advocacy group to complete a web-based survey about illness characteristics, treatment, disease burden, direct and indirect healthcare costs, work and school impairment.

Results: Data from 609 TSC adults or caregiver respondents with no cognitive impairments were analyzed. TSC adults (>18 years of age) had significantly higher direct out-of-pocket costs for ER visits, expenses for medical tests and procedures, alternative treatments, medications and lifetime cost of surgeries compared to TSC pediatric individuals. Both TSC adults and TSC caregivers reported work and school absenteeism and presenteeism; however, adults reported significantly higher absenteeism and presenteeism and overall activity impairment due to TSC, as might be expected, compared to TSC caregivers. TSC adults had significantly higher absenteeism and presenteeism rates compared to adults with moderate-to-severe plaque psoriasis and muscular sclerosis.

Conclusions: TSC results in considerable direct out-of-pocket medical costs and impairment to work productivity, especially for adults. Future studies should include the comparator group and examine direct cost burden in the US using electronic medical records and insurance databases.

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A study of health seeking behavior in families of children with Type 1 diabetes

Objectives: Importance of HSB is increasing being recognized in understanding patient compliance, adequacy of followup, and seeking of alternative therapies (AT), which impact glycemic control. We looked at HSB of T1D caregivers.

Methods: 56 families: Child's T1D duration >1 y, were interviewed: 49 coming to a private clinic, 7 in government hospitals. SES was low in 20, upper/middle ("non-poor") in 36.

Results: After diagnosis, 24/56 (43%) had consulted 2-10 (mean 3.3) doctors - 6/20 (30%) poor families, 18/ 36 (50%) non-poor. Conversely 11: 7 poor (35%) and 4/36 (11%) non-poor families consulted no doctor for 1-3 y (mean 1.25 y) after diagnosis. easons given: "nothing new to learn, can manage dose adjustment ourselves": 8; "did not know we were supposed to follow up": 2; "shifted out of Delhi, couldn't find pediatric endocrinologist": 1. During this gap, there were 3 admissions for hyperglycemia; and 5 episodes of severe hypoglycemia managed at home. AT was tried by 35/56 (62%: Ayurveda by 8, Homeopathy 10, Naturopathy/Home remedies 17 [bitter gourd, neem juice, fenugreek, jamun]): 40% AT triers were poor, 60% non-poor. Reasons given: Own beliefs, experiences of other diabetics, television, internet, social groups, magazines and seminars. Reasons for choosing medical provider: Doctor treating or referred to during admission: 26; own financial status: 11, distance: 7, their experience and level of satisfaction with doctor: 12. Of clinic patients, 25/49 have regular followup, 16 irregular, and 8 had no visits in the past year. SES-wise, 18/36 (50%) non-poor, 7/20 (35%) poor families have regular followup.

Conclusions: Doctor shopping, erratic followup, trying AT, are common problems, and need to be proactively discussed with families to find solutions. HSB is only partly determined by SES: Non-poor families did somewhat more doctor shopping; poor families had more irregular followup.

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Economic Burden of Hospitalization with Acute Wheezing in Preschool Children: A Multi-Center Study

Background: Wheezing is an important health problem in Thailand especially among preschool age.; Objective: The aim of this study was to estimate costs of wheezing for hospitalization in preschool children under patient, provider, and societal perspectives.

Material and Method: Two hundred and thirty-four participants who were admitted with acute wheezing at 4 hospitals including Thammasat University Hospital, Saraburi Hospital, Bhumibol Adulyadej Hospital and King Chulalongkorn Memorial Hospital during July 2014 to June 2015 were included in the present study. Data from hospital financial database and caregivers’ expenses were collected. Cost-to-charge ratio method was employed for valuation of direct medical costs. Informal care costs were determined by human capital approach.;

Results: The means of patient, provider and societal costs per admission were 3,020 THB (SD = 6,632 THB), 18,126 THB (SD = 16,898 THB), and 20,269 THB (SD = 20,537 THB) respectively. The main cost component in provider and societal perspective were accommodation costs during admission. Informal care cost was a major cost component for direct nonmedical costs. The economic burden of acute wheezing admission of preschool children in Thailand was estimated as 759 million THB per year.

Conclusion: These costs of illness analysis provided an evidence of economic burden and costs of preschool wheezing in hospitalization in Thailand.

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Difficulties and factors influencing purchase decision. The perspective of families with children with autism spectrum disorders on a gluten-free and casein-free diet. Preliminary study

Background: Gluten-free and casein-free diet is frequently used in the support of therapy of children with autism spectrum disorders. In addition, many parents restrict the consumption of simple sugars for their children.

Objective: The aim of this paper was to understand factors influencing purchase decision in case of family with children with autism spectrum disorders on gluten-free and/or casein-free and/or sugar-free diet and the difficulties associated with this type of nutrition.

Material and Methods: The study covered a group of 40 families with children with autism spectrum disorders (32 boys and 8 girls) aged 3 to 10 years. Data were collected with questionnaire included questions concerning overall characteristics of caregivers, availability of foods used in the special diet, factors affecting decision on the purchase of products, difficulties in maintaining the child nutrition method.

Results: The factors having strongest impact on parents' decisions on the purchase of products were product composition, presence of a certificate confirming the absence of gluten and/or milk and taste values. Exclusion diet constituted a considerable obstruction for traveling, social gatherings and resulted in conflicts with family and the environment. The limited range of healthy gluten-free, casein-free and sugar-free foods, low taste quality and unsatisfactory quality impeded purchase and preparation of varied meals.

Conclusions: The surveyed parents were aware consumers, paying attention primarily to product composition and safety. The respondents were looking for healthy, organic and nutritionally valuable products with low sugar content. Further development of the gluten/casein/ sugar free products market may considerably improve certain aspects of family's life with children with autism spectrum disorders. 

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Shifting Priorities for the Survival of My Child: Managing Expenses, Increasing Debt, and Tapping Into Available Resources to Maintain the Financial Stability of the Family

Background: Parents are confronted with a range of direct costs and intense caregiving demands following their child's cancer diagnosis, which may potentially threaten the financial stability of the family. Objective The aims of this study were to explore the financial impact of a new childhood cancer diagnosis on families and understand the strategies families use to manage these financial impacts.

Methods: As part of the mixed-methods Childhood Cancer Cost Study, a descriptive qualitative design was conducted. Parents discussed costs and their impact in a semistructured, audio-taped interview. A qualitative content analysis was used to analyze the transcribed data.

Results: Seventy-eight parents participated. Parents used several strategies to maintain financial stability. These strategies consisted of managing expenses, which entailed reducing living expenses and cutting unexpected cancer costs. Efforts to absorb these expenses required families to increase their debt while seeking ways to tap into available resources, including relying on their savings and leveraging their benefits and assets, increasing their paid work hours, relying on their support networks, and seeking help from philanthropy and government agencies for financial help.

Conclusion: Parents used several strategies to manage the increased out-of-pocket expenses and reduced household income.

Implications for Practice: Our findings of the financial impact of cancer costs on families provide insight into needed practice and policy changes aimed at lessening the economic impact of a childhood cancer diagnosis on the family and allow healthcare professionals and researchers to pursue more in-depth cost assessments in the future.

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How Poverty Shapes Caring for a Disabled Child: A Narrative Literature Review

Despite ample research on the relationship between disability and poverty, the experiences of parents of disabled children are herein generally overlooked. We argue that an understanding of how poverty shapes caring for a disabled child is crucial for disability inclusive development. Therefore, this paper narratively reviews literature on carers of disabled children from various contexts published between 1995 and 2015. It uncovers a significant knowledge gap on the impact of poverty despite slowly emerging evidence on how political, cultural and socioeconomic exclusion stifles parents to enhance their families' wellbeing and possibly reap the benefits of development policies. Implications for future research are addressed.

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Impact of Non-medical Out-of-pocket Expenses on Families of Children With Cerebral Palsy Following Orthopaedic Surgery

Purpose: Limited research has been conducted on the non-medical out-of-pocket expenses (NOOPEs) incurred by families of children with chronic health conditions. The study objectives were to: 1) calculate the estimated NOOPEs incurred by families during hospitalization of their child, 2) identify predictors of high NOOPEs, and 3) assess the impact of the child's chronic health condition on the family's finances. 

Design and Methods: Prospective observational study. Parents were included if their child was 3-20years old, had severe, non-ambulatory cerebral palsy (CP), and scheduled for hip or spine surgery. Parents reported all NOOPEs incurred during their child's hospitalization using the Family Expense Diary. Families completed the subscales of the Impact on Family Scale and the Assessment of Caregivers Experience with Neuromuscular Disease. Descriptive and univariate and multiple hierarchical regression models were used in the analysis.

Results: Fifty two parents participated. The total NOOPEs ranged from $193.00 to $7192.71 (M=$2001.92) per hospitalization representing an average of 4% of the family's annual earned income. Caregiver age (F=8.393, p<0.001), income (F=7.535, p<0.001), and distance traveled to the hospital (F=4.497, p=0.039) were significant predictors of high NOOPEs. The subscale scores indicated that a child's chronic health condition had a significant impact on family finances. 

Conclusions and Practice Implications: Hospitalization is associated with numerous NOOPEs that create additional financial demands for families caring for a child with severe CP. NOOPEs should be addressed when preparing families for their children's planned hospital admissions, especially those families of CSHCN who experience significant financial impacts secondary to their children's care. (Copyright © 2017 Elsevier Inc. All rights reserved.)

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Vulnerability and agency across treatment-seeking journeys for acutely ill children: how family members navigate complex healthcare before, during and after hospitalisation in a rural Kenyan setting

Background: Child mortality rates during hospitalisation for acute illness and after discharge are unacceptably high in many under-resourced settings. Childhood vulnerability to recurrent illness, and death, is linked to their families' situations and ability to make choices and act (their agency). We examined vulnerability and agency across treatment-seeking journeys for acutely ill children and considered the implications for policy and practice.

Method: A qualitative sub-study was embedded within the prospective CHAIN Network cohort study, which is investigating mechanisms of inpatient and post-hospital discharge mortality among acutely ill young children across a spectrum of nutritional status. Primary data were collected from household members of 20 purposively selected cohort children over 18 months through formal interviews (total n = 74), complemented by informal discussions and observations. Data were analysed using narrative and thematic approaches.

Results: Treatment-seeking pathways were often long and complex, particularly for children diagnosed as severely malnourished. Family members' stories reveal that children's carers, usually mothers, navigate diverse challenges related to intersecting vulnerabilities at individual, household and facility levels. Specific challenges include the costs of treatment-seeking, confusing and conflicting messaging on appropriate care and nutrition, and poor continuity of care. Strong power inequities were observed between family members and health staff, with many mothers feeling blamed for their child's condition. Caregivers' agency, as demonstrated in decision-making and actions, often drew on the social support of others but was significantly constrained by their situation and broader structural drivers.

Conclusion: To support children's care and recovery, health systems must be more responsive to the needs of families facing multiple and interacting vulnerabilities. Reducing incurred treatment costs, improving interpersonal quality of care, and strengthening continuity of care across facilities is essential. Promising interventions need to be co-designed with community representatives and health providers and carefully tested for unintended negative consequences and potential for sustainable scale-up.

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Pandemic with COVID-19 and Families with Children with Chronic Respiratory Diseases

COVID-19 pandemic has provoked a huge change in daily functioning in millions of people worldwide. The epidemiological measures in prevention of possible infection have increased the possible risks on the mental and physical health. We have conducted a survey in order to investigate the needs and challenges of families with children with chronic respiratory diseases. In this order, we have created a questionnaire with general information about the family, general information about the child with chronic respiratory disease, overall physical and mental health before and during the pandemic, needs and mental health condition of the parents/caregivers. This survey showed that this group of families of children with respiratory disorders have suffered financially in significant way and has changed the way they perform professional and educational patterns due to the pandemic. Most of the children were stable in their physical health, but their mental health has deteriorated. This is probably due to the regular contact with the medical staff, but not with the mental health professionals. This group of children has a significant reduction in their physical activity and increase the hours in front of TV screens. The further effect on the physical and mental health is to be investigated.

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Caregivers' Sense of Coherence: Implications on Direct and Indirect Costs of Dementia Care

Background: Dementia care is associated with physical, emotional, and monetary impact on the informal carers providing unpaid care. Differences in the personal characteristics of caregivers may help explain the variations in the costs of dementia care. Objective: The aim of this study was to analyze the effect of caregivers' sense of coherence (SOC) on direct and indirect costs in dementia care. Methods: A cross-sectional study was conducted in community dwelling caregivers of patients with Alzheimer's disease. Data of healthcare services were obtained from clinical registries, and information was collected from caregivers regarding their use of social care resources and time spent caregiving. The transformation of all costs into Euros was made assigning a fixed cost of 10.29 (sic)/h and 16.24 (sic)/h for assisting in instrumental and basic activities of daily living, respectively. Caregivers' SOC was assessed using the Orientation to Life Questionnaire (OLQ-13). Adjusted regression models were developed, with different types of costs as dependent variables. Results: A sample of 147 caregivers was recruited. The mean OLQ-13 score was 73.3 points (SD = 11.6). The regression models showed a small association between caregivers' SOC and direct costs, mainly linked to the use of social care resources (r(2) = 0.429; beta = -15.6 D /month), and a greater association between SOC and indirect costs (r(2) = 0.562; beta = -222.3 D /month). Conclusion: Increasing caregivers' SOC could reduce dementia care costs by decreasing the use of social care resources and caregiving time.

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Myocardial infarction: Economic, health, and social impacts on informal caregivers

Objectives: The aim of the study was to measure the economic impact of informal care (IC) on caregivers assisting myocardial infarction (MI) survivors in France. Health and social impacts were also described. Methods: Data from the prospective 2008 Health and Disabilities Households Survey (Enquête Handicap-Santé), carried out among the French general population, were used to obtain information about patients with MI and their informal caregivers. To estimate the approximate monetary value of IC, three methods were used: the proxy good method, opportunity cost method (OCM), and contingent valuation method (CVM). A multivariate analysis was performed to determine the associations of the IC duration and the existence of professional care with the health indicators stated by caregivers. Results: The analysis included data from 147 caregivers. The mean value of IC ranged from €9,679 per year using the CVM to €11,288 per year using the OCM (p > .05). The mean willingness to pay for an additional hour of IC was €10.9 (SD = 8.3). A total of 46.2 percent of caregivers reported that IC negatively affected theirs physical condition, and 46.3 percent reported that it negatively affected their psychological health. In addition, 40.1 percent declared that caregiving activity made them anxious and 38.8 percent stated they felt alone. Associations were identified between the duration of IC and feeling the need to be replaced, feeling alone and making sacrifices (p < .05). Conclusions: Informal caregiver burden may be recognized in health technology assessment in order not to underestimate the cost of strategies and to facilitate the comparability of cost-effectiveness outcomes between studies.

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Long-Term Socioeconomic Impact of Informal Care Provided to Patients with Pacemakers: Remote vs. Conventional Monitoring

The impact of informal care immediately after pacemaker (PM) implantation has been well established; however, not much is known about its long-term effects. The present study compared personal characteristics, associated problems, workloads, time, and costs related to informal care provided to patients with PM under remote monitoring (RM) vs. conventional monitoring (CM) in the hospital, five years after implantation. The PONIENTE study was a controlled, non-randomized or masked clinical trial conducted with information obtained from the perspective of informal caregivers. Data were collected at 12 and 60 months after PM implantation. The patients in the study were assigned to two different groups: remote monitoring (RM) and conventional monitoring (CM). The "Disability, personal autonomy, and dependency situations survey" (EDAD) was administered to collect information on sociodemographic characteristics, time, care difficulties, health status, professional aspects, and impact on economic, family, or leisure aspects of the main caregivers providing care to patients with pacemakers. After five years, 55 patients completed the study (RM = 21; CM = 34). The average age was 63.14 years (SD = 14.90), 96% of them were women, and the most predominant marital status was married (72%). Informal caregivers lived in the homes of the patients in 70% of cases, and 88% indicated that they had to provide care six to seven days a week. The average cost per patient during the monitoring period studied was 13.17% lower in the RM group than in the CM group, and these differences were not statistically significant ( p = 0.35). This study found similar results in the two groups under study with respect to sociodemographic characteristics, workload, time, and problems associated with health, leisure and family members. The costs associated with care were higher in the CM group; however, these differences were not statistically significant.

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Health-care use and cost for multimorbid persons with dementia in the National Health and Aging Trends Study

Background: Most persons with dementia have multiple chronic conditions; however, it is unclear whether co-existing chronic conditions contribute to health-care use and cost. Methods: Persons with dementia and >= 2 chronic conditions using the National Health and Aging Trends Study and Medicare claims data, 2011 to 2014. Results: Chronic kidney disease and ischemic heart disease were significantly associated with increased adjusted risk ratios of annual hospitalizations, hospitalization costs, and direct medical costs. Depression, hypertension, and stroke or transient ischemic attack were associated with direct medical and societal costs, while atrial fibrillation was associated with increased hospital and direct medical costs. No chronic condition was associated with informal care costs. Conclusions: Among older adults with dementia, proactive and ambulatory care that includes informal caregivers along with primary and specialty providers, may offer promise to decrease use and costs for chronic kidney disease, ischemic heart disease, atrial fibrillation, depression, and hypertension.

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Financial toxicity associated with a cancer diagnosis in publicly funded healthcare countries: a systematic review

Purpose: Financial toxicity related to cancer diagnosis and treatment is a common issue in developed countries. We seek to systematically summarize the extent of the issue in very high development index countries with publicly funded healthcare. Methods: We identified articles published Jan 1, 2005, to March 7, 2019, describing financial burden/toxicity experienced by cancer patients and/or informal caregivers using OVID Medline Embase and PsychInfo, CINAHL, Business Source Complete, and EconLit databases. Only English language peer-reviewed full papers describing studies conducted in very high development index countries with predominantly publicly funded healthcare were eligible (excluded the USA). All stages of the review were evaluated in teams of two researchers excepting the final data extraction (CJL only). Results: The searches identified 7117 unique articles, 32 of which were eligible. Studies were undertaken in Canada, Australia, Ireland, UK, Germany, Denmark, Malaysia, Finland, France, South Korea, and the Netherlands. Eighteen studies reported patient/caregiver out-of-pocket costs (range US$17–US$506/month), 18 studies reported patient/caregiver lost income (range 17.6–67.3%), 14 studies reported patient/caregiver travel and accommodation costs (range US$8–US$393/month), and 6 studies reported financial stress (range 41–48%), strain (range 7–39%), or financial burden/distress/toxicity among patients/caregivers (range 22–27%). The majority of studies focused on patients, with some including caregivers. Financial toxicity was greater in those with early disease and/or more severe cancers. Conclusions: Despite government-funded universal public healthcare, financial toxicity is an issue for cancer patients and their families. Although levels of toxicity vary between countries, the findings suggest financial protection appears to be inadequate in many countries. 

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Economic burden of the persistent morbidity of nodding syndrome on caregivers in affected households in Northern Uganda

Background Nodding syndrome (NS), is an unexplained form of epilepsy which leads to stunted growth, cognitive decline, and a characteristic nodding of the head. Current data about its impact on households in Uganda is scarce. Therefore, this study aims to assess the economic burden of the persistent morbidity of NS on caregivers in affected households in Northern Uganda. Methods A cross-sectional cost-of-care study was conducted from January 2019 to February 2019 in Lakwela village-Northern Uganda in 14 households, who are members of a community-based organization (CBO) established in the village with the support of a Japanese research team, (Uganda-Japan Nodding Syndrome Network). Data was collected through questionnaires. Both direct (medical and non-medical) and indirect (informal care) costs of caregiving were assessed. Indirect costs were valued using the human-capital method as loss of production. Results Direct costs constituted a higher proportion of costs for NS households, accounting for on average 7.7% of household expenditure. The annual weighted mean cost per NS patient was estimated at 27.6 USD (26.4 USD direct costs, 96.2% and 1.2 USD indirect cost, 3.8%). Average time spent on informal caregiving was 4.4 +/- 1.7 (standard deviation) hours/week with an estimated annual informal caregiving cost of 24.85 USD and gross domestic product (GDP) loss of 412.40 USD. Conclusion Direct costs due to NS are still high among households in this study. More studies are needed to investigate measures that could help bring down these costs and equally reduce the day-to-day disruption of caregiver's activities; consequently, improving the lives of these affected households and communities.

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Development of Population Tariffs for the CarerQol Instrument for Hungary, Poland and Slovenia: A Discrete Choice Experiment Study to Measure the Burden of Informal Caregiving

Background: The CarerQol instrument can be used in economic evaluations to measure the care-related quality of life of informal caregivers. Tariff sets are available for Australia, Germany, Sweden, the Netherlands, the UK, and the USA. Objective: Our objective was to develop tariff sets for the CarerQol instrument for Hungary, Poland and Slovenia and to compare these with the existing value sets. Methods: Discrete-choice experiments were carried out in Hungary, Poland and Slovenia. Data were collected through an online survey between November 2018 and January 2019, using representative samples of 1000 respondents per country. Tariffs were calculated from coefficient estimates from panel mixed multinomial logit models with random parameters. Results: All seven CarerQol domains contributed significantly to the utility associated with different caregiving situations. Attributes valued highest were 'physical health' (tariffs for no problems were 15.6-21.8), 'mental health' (18.1-18.9) and 'fulfilment' (16.3-22.9). Value sets were comparable across the countries, although in Poland 'a lot of fulfilment' was valued higher (22.9) than in Hungary (16.3) and Slovenia (17.1). Compared with existing value sets, in the three Central European countries, 'fulfilment' was more important, whereas 'financial problems' were less important. Conclusion: For the first time in the Central and Eastern European region, country-specific tariffs are now available for the Hungarian, Polish and Slovenian versions of the CarerQol instrument. This facilitates inclusion of the impact of informal care in economic evaluations. Our results can be used to develop and evaluate country-specific health policy strategies to support informal caregivers. The differences found in informal care preferences highlight the limited transferability of CarerQol tariffs across European regions.

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Design, data linkage, and implementation considerations in the first cooperative group led study assessing financial outcomes in cancer patients and their informal caregivers

Few studies have assessed the financial impact of cancer diagnosis on patients and caregivers in diverse clinical settings. S1417CD, led by the SWOG Cancer Research Network, is the first prospective longitudinal cohort study assessing financial outcomes conducted in the NCI Community Oncology Research Program (NCORP). We report our experience navigating design and implementation barriers. Patients age ≥ 18 within 120 days of metastatic colorectal cancer diagnosis were considered eligible and invited to identify a caregiver to participate in an optional substudy. Measures include 1) patient and caregiver surveys assessing financial status, caregiver burden, and quality of life and 2) patient credit reports obtained from the credit agency TransUnion through a linkage requiring social security numbers and secure data transfer processes. The primary endpoint is incidence of treatment-related financial hardship, defined as one or more of the following: debt accrual, selling or refinancing home, ≥20% income decline, or borrowing money. Accrual goal was n = 374 patients in 3 years. S1417CD activated on Apr 1, 2016 and closed on Feb 1, 2019 after reaching its accrual goal sooner than anticipated. A total of 380 patients (median age 59.7 years) and 155 caregivers enrolled across 548 clinical sites. Credit data were not obtainable for 76 (20%) patients due to early death, lack of credit, or inability to match records. Robust accrual to S1417CD demonstrates patients' and caregivers' willingness to improve understanding of financial toxicity despite perceived barriers such as embarrassment and fears that disclosing financial status could influence treatment recommendations. 

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Comprehensive support of family caregivers: Are there health system cost offsets?

Objectives: To examine the effect of the Department of Veterans Affairs' (VA) Program of Comprehensive Assistance for Caregivers (PCAFC) on total VA health care costs for Veterans. Data Sources: VA claims. Study Design: Using a pre-post cohort design with nonequivalent control group, we estimated the effect of PCAFC on total VA costs up through 6 years. The treatment group included Veterans (n = 32 394) whose caregivers enrolled in PCAFC. The control group included an inverse probability of treatment weighted sample of Veterans whose caregivers were denied PCAFC enrollment (n = 38 402). Data Extraction: May 2009-September 2017 Principal Findings: Total VA costs pre-PCAFC application date were no different between groups. Veterans in PCAFC were estimated to have $13 227 in VA costs in the first 6 months post-PCAFC application, compared to $10 806 for controls. Estimated VA costs for both groups decreased in the first 3 years with a narrowing, but persistent and significant, difference, through 5.5 years. No significant difference in VA health care costs existed at 6 years, approximately $10 000 each, though confidence intervals reflect significant uncertainty in cost differences at 6 years. Conclusions: Increased costs arose from increased outpatient costs of participants. Sample composition changes may explain lack of significance in cost differences at 6 years because these costs comprise of early appliers to PCAFC. Examining 10-year costs could elucidate whether there are long-term cost offsets from increased engagement in outpatient care. 

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Associations between informal care costs, care quality, carer rewards, burden and subsequent grief: the international, access, rights and empowerment mortality follow-back study of the last 3 months of life (IARE I study)

Background: At the end of life, formal care costs are high. Informal care (IC) costs, and their effects on outcomes, are not known. This study aimed to determine the IC costs for older adults in the last 3 months of life, and their relationships with outcomes, adjusting for care quality. Methods: Mortality follow-back postal survey. Setting: Palliative care services in England (London), Ireland (Dublin) and the USA (New York, San Francisco). Participants: Informal carers (ICrs) of decedents who had received palliative care. Data: ICrs reported hours and activities, care quality, positive aspects and burdens of caregiving, and completed the Texas Revised Inventory of Grief (TRIG). Analysis: All costs (formal, informal) were calculated by multiplying reported hours of activities by country-specific costs for that activity. IC costs used country-specific shadow prices, e.g. average hourly wages and unit costs for nursing care. Multivariable logistic regression analysis explored the association of potential explanatory variables, including IC costs and care quality, on three outcomes: positive aspects and burdens of caregiving, and subsequent grief. Results: We received 767 completed surveys, 245 from London, 282 Dublin, 131 New York and 109 San Francisco. Most respondents were women (70%); average age was 60 years. On average, patients received 66-76 h per week from ICrs for 'being on call', 52-55 h for ICrs being with them, 19-21 h for personal care, 17-21 h for household tasks, 15-18 h for medical procedures and 7-10 h for appointments. Mean (SD) IC costs were as follows: USA $32,468 (28,578), England $36,170 (31,104) and Ireland $43,760 (36,930). IC costs accounted for 58% of total (formal plus informal) costs. Higher IC costs were associated with less grief and more positive perspectives of caregiving. Poor home care was associated with greater caregiver burden. Conclusions: Costs to informal carers are larger than those to formal care services for people in the last three months of life. If well supported ICrs can play a role in providing care, and this can be done without detriment to them, providing that they are helped. Improving community palliative care and informal carer support should be a focus for future investment.

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1 in 5 North Carolina Adults are Caregivers: Addressing Unpaid Family Caregiver Burden with Supportive Services

Medical advances paired with expanding home care technology and shorter hospital stays have placed increased responsibilities on family and friends. Yet, most caregivers report they are ill-prepared for their role. There are services and supports specifically designed to assist family caregivers. Three days stand out from the last 10 years of working with family caregivers in North Carolina. They each began with a phone call. One came at the start of a Monday, one as I was readying to leave for the day, and the third somewhere in the middle. All of them were memorable for their raw desperation, their honesty, and the glimpse they provided into Carolina families and the lives made fragile by caregiving.

The Monday morning call was from someone at a regional organization who had hired a local home care agency to provide overnight weekend respite care to relatives of an older woman. The family was supposed to return Monday morning to relieve the home care worker, but the agreed-upon time came and went. A few phone calls by the home care agency revealed that the family had decided not to come back, ever. They shared that they had done all they could for their grandmother and that it was time for someone else to take care of her.

The end-of-day call was from a woman who was very careful not to give any hints of identity or location. She asked me what would happen if we got a call from a payphone telling us that there was a man home alone in serious need of care. Would someone be sent to take care of him? Would he be okay? I could hear need in her voice and I tried to get more information so we could reach out with possible help, but she would not share. Things she said led me to believe she was the caregiver for her husband, and at the very end of her strength to continue in that role.

The last call was from a woman in her 30s. She had a disabling condition and was no longer able to bathe herself. Her caregiver was a male relative and neither of them were comfortable with him bathing her. She had no one else to help, could not afford to hire someone for this, and did not qualify for public assistance. Every service I mentioned, she replied that she had already tried it and been told no. I spent the rest of the afternoon coming up empty as I looked for a solution that would preserve this woman's dignity and independence.

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Caring behind closed doors: six months on. The continued impact of the coronavirus (COVID-19) pandemic on unpaid carers

There were up to 9.1 million unpaid carers across the UK before the COVID-19 pandemic, providing everything from a few hours of support a week to intensive and complex round the clock care.  The pandemic has resulted in millions of new carers – 4.5 million new to caring since the start of the pandemic, 2.8 million of whom are juggling work and care. Caring can have significant costs, and without sufficient support it can take its toll on carers’ emotional and physical health, ability to work and have a knock-on effect on their long-term finances. Carers have been hit particularly hard as a result of the COVID-19 pandemic. As this research shows many have had to make extremely difficult decisions about work and family.

Carers are providing even more care than six months ago; Needs have increased; Fewer breaks and no breaks; Worse health and wellbeing; Worried about winter; Exhausted and worn out; Struggling financially; Work – a mixed picture; Digital differences; Some positives during caring 

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Family Long-Term Caregivers' Lost Productivity Cost: A Research Study

Population aging and issues surrounding family caregiver costs are worldwide trends and concerns. In this study, family caregivers lost productivity cost due to elderly care over time was examined and factors affecting lost productivity were analyzed. Based on these findings, the welfare system as related to the elderly should be re-evaluated, and concrete and realistic countermeasures developed.

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Projections of care for older people with dementia in England: 2015 to 2040

BACKGROUND: The number of older people with dementia and the cost of caring for them, already substantial, are expected to rise due to population ageing. OBJECTIVE: This study makes projections of the number of older people with dementia receiving unpaid care or using care services and associated costs in England. METHODS: The study drew on up-to-date information for England from multiple sources including data from the CFASII study, output from the PACSim dynamic microsimulation model, Office for National Statistics population projections and data from the MODEM cohort study. A simulation model was built to make the projections. RESULTS: We project that the number of older people with dementia will more than double in the next 25 years. The number receiving unpaid or formal care is projected to rise by 124%, from 530,000 in 2015 to 1,183,000 in 2040. Total cost of dementia is projected to increase from £23.0 billion in 2015 to £80.1 billion in 2040, and average cost is projected to increase from £35,100 per person per year in 2015 to £58,900 per person per year in 2040. Total and average costs of social care are projected to increase much faster than those of healthcare and unpaid care. CONCLUSION: The numbers of people with dementia and associated costs of care will rise substantially in the coming decades, unless new treatments enable the progression of the condition to be prevented or slowed. Care and support for people with dementia and their family carers will need to be increased. 

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Cost-effectiveness of an in-home respite care program to support informal caregivers of persons with dementia: A model-based analysis

Objectives: To evaluate cost-effectiveness of an in-home respite care program in addition to standard community-based dementia care to support informal caregivers of persons with dementia compared with standard community-based dementia care. Methods: An age-dependent decision-analytic Markov model was applied from a third-party payer and a societal perspective projecting results of a quasi-experimental study over a time horizon of 5 years assuming a repetition of the program every 6 months. Additionally, to deal with uncertainty and to test robustness of the model scenario, one-way and probabilistic sensitivity analyses were conducted. Results: Implementing the program resulted in a quality-adjusted life year (QALY) gain of 0.14 in favor of the invention group compared with controls and an incremental cost of 1270€ from the third-party payer perspective and of 1220€ from the societal perspective. Next, an incremental cost-effectiveness ratio of 9042€/QALY and of 8690€/QALY was found in the base case, from the third-party payer perspective and the societal perspective, respectively. The scenario, one-way sensitivity, and probabilistic analyses demonstrated robustness of the base-case results. Conclusion: This cost-effectiveness analysis suggests that an in-home respite care program in addition to standard community-based dementia care is a cost-effective approach compared with standard community-based dementia care only. These findings provide more insight into the value of such services for the patient, the caregiver, and for society.

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Caregivers’ burdens and barriers in accessing healthcare services for dependent elders in Thailand

Background: Elders report poor health status and a greater need for healthcare services; however, in Thailand there are barriers in accessing healthcare services for these individuals. Objective: To study the health status of dependent elders in Thailand, the barriers in accessing health services for them, the impact resulting from these barriers, and the impact on caregivers when taking care of dependent elders. Materials and Methods: The study was conducted in 4 provinces in Thailand: Nonthaburi, Pathumthani, Ayutthaya, and Lopburi. Data were collected from 243 home-bound and bed-bound elders and 124 caregivers. The research tools both qualitative and quantitative parts were used to interview dependent elders and their primary caregivers. Results: The study found that 96.5% of the dependent elders had chronic disease comorbidity with non-communicable. The barriers in accessing health services included long waits for healthcare services, transportation expenses to these services, medical expenses, no mobility support or body assist tools, no accessibility to information, unawareness of their rights in terms of medical treatment, and caregiver issues. These barriers affected the dependent elders regarding their physical and mental health and financial issues. Moreover, taking care of dependent elders had the impact on caregivers in terms of physical and mental health, family relationships, social participation, and financial issues. Conclusion: There are still barriers in accessing health services for dependent elders. Furthermore, taking care of them is caregivers’ burden. Therefore, caregivers should be supported. 

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Informal caring for back pain: overlooked costs of back pain and projections to 2030

This study models the economic costs of informal caring for people with back pain, using a microsimulation model, Care&WorkMOD, from 2015 to 2030. Care&WorkMOD was based on 3 national Australian Surveys of Disability, Ageing and Carers (2003, 2009, 2012) data sets for individuals aged 15 to 64 years. Estimated national income loss due to caring for people with back pain was AU$258 million in 2015, increasing to $398 million in 2030 (54% increase). Lost income tax revenue to the Australian government due to informal care of people with back pain was estimated to be AU$78 million in 2015, increasing to AU$118 million in 2030 (50% increase), and additional welfare payments were estimated to rise from $132 million in 2015 to AU$180 in 2030 (36% increase). Larger growth in lost income, compared with the increase in welfare payments, means that there would be an increasing income gap between those out of the labour force providing informal care and noncarers who are in the labour force, leading to increased inequality. Informal carers are defined as providers of informal, unpaid assistance to someone with a health condition, for at least 6 months. Informal carers of people with back pain who are out of the labour force incur substantial economic costs. Furthermore, back pain is a large economic burden on national governments. Policies addressing back pain prevention and treatment, and supporting carers, may offset government welfare expenditure, while improving the socioeconomic well-being of carers and patients.

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Utilization and costs of formal and informal care, home adaptations, and physiotherapy among older patients with hip fracture

Aims: This feasibility study investigates the utilization and cost of health resources related to formal and informal care, home adaptations, and physiotherapy among patients aged 60 years and above after hip fracture from a multicentre cohort study (World Hip Trauma evaluation (WHiTe)) in the UK. Methods: A questionnaire containing health resource use was completed at baseline and four months post-injury by patients or their carer.completion rate and mean cost of each health resource item were assessed and sensitivity analysis was performed to derive a conservative estimate of the informal care cost. All costs are presented in 2017/18 pound sterling. Results: A total of 4,183 patients from the WHiTe cohort completed the baseline questionnaire between May 2017 and April 2018, of whom 3,524 (84.2%) completed the four-month health resource section. estimated mean costs of formal and informal care, home adaptations, and physiotherapy during the four months following injury were £2, 843 (sD 5, 467), £6, 613 (sD 15, 146), £706 (sD 1, 706) and £9 (sD 33), respectively. Mean cost of informal care decreased to £660 (sD £ 1,040) in the sensitivity analysis when informal care was capped at 17.2 hours per day. Conclusion: Informal care is a significant source of costs after hip fracture and should therefore be included in future economical analyses of this patient group. our results show that there is considerable variation in the interpretation of time-use of informal care among patients and further work is needed to improve how data regarding informal care are collected in order to obtain a more accurate cost estimate. 

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A literature review of cost-of-illness studies on the economic burden of multiple sclerosis

Background: Multiple sclerosis has both high healthcare and social impacts. Objective: The purpose of this article is to analyse the available literature describing the economic burden of multiple sclerosis and to compare costs among studies examining main cost drivers. Methods: A literature search on studies published in English on cost-of-illness of multiple sclerosis included in this review using PubMed, the Cochrane Library, SCOPUS and Web of Science includes a retrospective horizon and it describes direct and indirect costs in patients categorized into severity groups. Results: Several papers were obtained from the database search (n=37). Additionally, results from “hand searching” were also included, where a wider horizon was considered. Cost estimates were compared among studies that used a societal perspective on costs, time-period studied, and year of price level used. The estimated total annual cost per patient in Europe is on average 40,300€ (n=20). In addition, differences by geographic areas and severity groups are also considered. All in all, the higher the severity, the higher the associated costs. Conclusions: This systematic review provides one clear finding: multiple sclerosis places a huge economic burden on healthcare models and societies due to productivity losses and caregiver burden. Moreover, costs of drugs were main cost determinants for less severe cases of multiple sclerosis and informal care and production losses for the most severe cases of multiple sclerosis.

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The social and economic burden on family caregivers for older adults in the Czech Republic

Background: In this paper, we analyse the economic burden of elder care in the Czech Republic by assessing how family members of senior citizens engage in caregiving. To do this, we examined the time and cost associated with caregiving as a function of age, gender, and income of the caregiver. Methods: A questionnaire comprising 17 items was used to gather data from 155 informal caregivers whose seniors are affiliated with 200 registered home care agencies. Spearman rank correlation was adopted to analyse how caregivers' income, age and gender influences the costs accrued and time spent in caring for elders. The expenses are divided into direct and indirect. Publicly available sources are used to establish expenses on treatment and medication, which cannot be determined by the questionnaire survey. Results: Results show that around-the-clock care is the most common. Spouses of care recipients make up the highest number of caregivers, and women represent the largest portion of this group. Additionally, the more the time spent caring for an elder, the higher the cost associated with such care. The total annual burden of informal caregivers is determined by the sum of annual average indirect costs, amounting to € 36,888, and annual direct costs, amounting to € 2775, resulting in a total of € 39,663 per year. Conclusion: Czech social policymakers should begin to consider better packages for caregivers in the form of incentives and other monetary benefits to improve living standards and care for ageing seniors. 

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Equity and the financial costs of informal caregiving in palliative care: A critical debate

Background: Informal caregivers represent the foundation of the palliative care workforce and are the main providers of end of life care. Financial pressures are among the most serious concerns for many carers and the financial burden of end of life caregiving can be substantial. Methods: The aim of this critical debate paper was to review and critique some of the key evidence on the financial costs of informal caregiving and describe how these costs represent an equity issue in palliative care. Results: The financial costs of informal caregiving at the end of life can be significant and include carer time costs, out of pocket costs and employment related costs. Financial burden is associated with a range of negative outcomes for both patient and carer. Evidence suggests that the financial costs of caring are not distributed equitably. Sources of inequity are reflective of those influencing access to specialist palliative care and include diagnosis (cancer vs non-cancer), socio-economic status, gender, cultural and ethnic identity, and employment status. Effects of intersectionality and the cumulative effect of multiple risk factors are also a consideration. Conclusions: Various groups of informal end of life carers are systematically disadvantaged financially. Addressing these, and other, determinants of end of life care is central to a public health approach to palliative care that fully recognises the value of carers. Further research exploring these areas of inequity in more depth and gaining a more detailed understanding of what influences financial burden is required to take the next steps towards meeting this aspiration. We will address the conclusions and recommendations we have made in this paper through the work of our recently established European Association of Palliative Care (EAPC) Taskforce on the financial costs of family caregiving. 

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Care, poverty and coronavirus across Britain

Carers, paid and unpaid, are at the forefront of our response to the Coronavirus, putting themselves at risk to protect us all. Yet, if you are a carer, for adults or children, you are more likely to be living in poverty. This is not right.

This briefing note updates our Make Care Count report which focuses on the link between care and poverty before the crisis. It describes carers’ experiences of the pandemic, prioritising the voices of carers throughout, before detailing how we can take the first steps towards ending poverty for carers in Britain.

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Healthcare utilization and productivity loss in glioma patients and family caregivers: the impact of treatable psychological symptoms

Background: Gliomas are associated with significant healthcare burden, yet reports of costs are scarce. While many costs are unavoidable there may be treatable symptoms contributing to higher costs. We describe healthcare and societal costs in glioma patients at high risk for depression and their family caregivers, and explore relationships between costs and treatable symptoms. Methods: Data from a multicenter randomized trial on effects of internet-based therapy for depressive symptoms were used (NTR3223). Costs of self-reported healthcare utilization, medication use, and productivity loss were calculated for patients and caregivers separately. We used generalized linear regression models to predict costs with depressive symptoms, fatigue, cognitive complaints, tumor grade (low-/high-grade), disease status (stable or active/progression), and intervention (use/non-use) as predictors. Results: Multiple assessments from baseline through 12 months from 91 glioma patients and 46 caregivers were used. Mean overall costs per year were M = €20,587.53 (sd = €30,910.53) for patients and M = €5,581.49 (sd = €13,102.82) for caregivers. In patients, higher healthcare utilization costs were associated with more depressive symptoms; higher medication costs were associated with active/progressive disease. In caregivers, higher overall costs were linked with increased caregiver fatigue, cognitive complaints, and lower patient tumor grade. Higher healthcare utilization costs were related to more cognitive complaints and lower tumor grade. More productivity loss costs were associated with increased fatigue (all P < 0.05). Conclusions: There are substantial healthcare and societal costs for glioma patients and caregivers. Associations between costs and treatable psychological symptoms indicate that possibly, adequate support could decrease costs. Trial registration: Netherlands Trial Register NTR3223. 

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The unique burden of rare cancer caregiving: caregivers of patients with Erdheim-Chester disease

Research examining the experience of informal caregivers (ICs) for patients with rare cancers is limited. This was a mixed-methods pilot study of 14 ICs for patients with Erdheim-Chester disease (ECD), an ultra-rare neoplasm. Participants were predominantly female and over half provided at least 60% of their loved one's care. Participants completed measures of the impact of caregiving, caregiver burden, unmet needs, quality of life, anxiety, and depression. Participants reported substantial impact of caregiving, including limiting (50%) or discontinuing (21%) paid employment, and exhausting financial savings (43%). ICs reported a moderate level of burden with five (38%) reporting risk for burnout. While participants reported anxiety (64%) and depression (14%), their overall quality of life was favorable. Semi-structured interviews highlighted factors related to the distress and isolation of navigating a rare cancer. ECD ICs report burden and distress shaped by the experience of providing care for a patient with a rare cancer.

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Cultures of volunteer care? A comparative study of Australia and Denmark

This article seeks to understand two puzzling findings from a comparative study of volunteer care work: that volunteers in Denmark are perceived to be cost-adding, while volunteers in Australia are perceived to be cost-saving; and that volunteers in Australia are perceived to be better than paid workers, while volunteers in Denmark are considered second-best to paid workers. Using a 'cultures of care' framework, this article explores whether these articulations reflect on culturally determined care ideals. The findings suggest that different cultures of care exist. Differences are explained by the development of the two welfare states.

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The cost of caring: out-of-pocket expenditures and financial hardship among Canadian carers

Many carers spend money out of their own pockets on the care-related needs of their family members or friends, and this spending may expose carers to a higher risk of financial hardship. Using data from a nationally representative sample of family carers drawn from Statistics Canada's 2012 General Social Survey on Caregiving and Care Receiving, we find that nearly one in five carers reports experiencing financial hardship. The results from multivariate logistic regression analysis show that care-related out-of-pocket expenditures are significant predictors of financial hardship. The results suggest establishing personal financial planning strategies and public policies to minimise the risk of incurring financial hardship due to care-related out-of-pocket expenditures.

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Caring behind closed doors: Forgotten families in the coronavirus outbreak

Carers UK carried out an online survey between 3rd April and 14th April 2020. A total of 5,047 carers and former carers responded to the survey. This included 4,830 current carers and 217 former carers. Compared to the carer population as a whole, respondents to this survey were more likely to be female and caring for a high number of hours every week. As not all respondents completed every question in the survey, a number of the figures given in this report, including those presented here, are based upon responses from fewer than 5,047 carers.

Of current carers responding to the survey:

  • 67% live in England, 19% live in Scotland, 9% live in Northern Ireland, and 6% live in Wales.
  • 81% identify as female and 18% identify as male.
  • 23% consider themselves to have a disability.
  • 1% are aged 0–24, 4% are aged 25–34, 13% are aged 35–44, 27% are aged 45–54, 32% are aged 55– 64, 17% are aged 65–74, and 5% are aged 75 and over.
  • 4% identified as lesbian, gay or bisexual.
  • 4% described their ethnicity as black or minority ethnic.
  • 18% also have childcare responsibilities for a nondisabled child under 18.
  • 36% have been caring for 15 years or more, 17% for between 10–14 years, 24% for 5–9 years, 20% for 1–4 years, 2% for less than one year and just 1% have been caring since the beginning of the coronavirus outbreak. 
  • Most (71%) care for one person, 20% care for two people, 6% for three people, and 2% care for four or more people. 
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Covid-19 pandemic: 4.5 million become unpaid carers in a matter of weeks

New figures released for Carers Week (8th – 14th June 2020) show an estimated 4.5 million people in the UK have become unpaid carers as a result of the Covid-19 pandemic. This is on top of the 9.1 million unpaid carers who were already caring before the outbreak, bringing the total to 13.6 million.

2.7 million women (59%) and 1.8 million men (41%) have started caring for relatives who are older, disabled or living with a physical or mental illness. Typically, they will have been supporting loved ones from afar, helping with food shopping, collecting medicine, managing finances and providing reassurance and emotional support during the pandemic. Some will have taken on intense caring roles, helping with tasks such as personal care, moving around the home, administering medication and preparing meals.

2.8 million people (62%) who have started caring since the outbreak are also juggling paid work alongside their caring responsibilities, highlighting the need for working carers to be supported as they return to offices and work sites.

The six charities supporting Carers Week - Carers UK, Age UK, Carers Trust, Motor Neurone Disease Association, Oxfam GB and Rethink Mental Illness – are calling on the UK Government to recognise and raise awareness of the role unpaid carers are playing during the pandemic and ensure they are supported through it, and beyond.

Both unpaid carers (71%) and adults without caring responsibilities (70%) said managing the stress and responsibility of being an unpaid carer was/ would be the top challenge when caring. Families are under a huge amount of pressure managing their caring roles and are worried about how they will cope in the weeks and months ahead.

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Implementing routine communication about costs of cancer treatment: perspectives of providers, patients, and caregivers

Objectives: Rising costs in oncology care often impact patients and families directly, making communication about costs and financial impacts of treatment crucial. Cost expenditures could offer opportunities for estimation and prediction, affording personalized conversations about financial impact. We sought to explore providers', patients', and caregivers' preferences towards implementing communication about cost, including when, how, and by whom such information might be provided.; Methods: We conducted semi-structured phone interviews with a diverse population including 12 oncology providers, 12 patients, and 8 patient caregivers (N = 32). The constant comparative method was used to identify mutually agreed upon themes.; Results: Participant groups differed in their concerns surrounding cost communication, namely whether they want to receive this information and how such information might impact provider and patient treatment decisions. All participants agreed that oncology providers should not be leading cost conversations. Patients and caregivers identified social workers or financial advisors as most equipped to communicate about cost. Participants emphasized timely cost conversations, ideally around the time of diagnosis. Participants favored various metrics of financial impact beyond overall costs of care including disability, days lost from work, and out-of-pocket expenses.; Conclusion: Cost transparency should be incorporated into usual care; however, there are several challenges to making cost conversations a part of everyday practice. Patients and family members need resources related to cost to aid in decision-making and those delivering cost information should have competency in oncology, financial advisement, and patient-centered care.

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The care-wage penalty: the association between family care and wages

Background: Against the background of demographic aging, the need for professional and private care will increase in the future. To contain costs many welfare states rely on the family as care provider and, in addition, people in need of care often prefer being cared for at home. Thus, the number of people who provide care privately and without pay in the home environment (referred to as family care in this article) is likely to increase. So far, however, research on the impact of family care on the labor market situation of caregivers in general and their wages in particular remains scarce. Objective: This article examines whether and if so to what extent, family care affects the wages of women and men. Material and methods: Using data from the German Socio-Economic Panel (2001–2017), fixed effects regressions were estimated separately for women and men, while accounting for important confounders. Results: Both women (2.4%) and men (3%) suffer wage losses as a result of family care activities. Conclusion: The results indicate that care-related wage losses, net of relevant controls, exist.

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Family Caregiver Skills Training to Improve Experiences of Care: a Randomized Clinical Trial

Objective: To evaluate the effectiveness of Helping Invested Families Improve Veterans' Experiences Study (HI-FIVES), a skills training program for caregivers of persons with functional or cognitive impairments. Design: A two-arm RCT. Setting: Single Veterans Affairs Medical Center. Participants: Patients and their primary caregivers referred in the past 6 months to home and community-based services or geriatrics clinic. Intervention: All caregivers received usual care. Caregivers in HI-FIVES also received five training calls and four group training sessions. Main Measures: Cumulative patient days at home 12 months post-randomization, defined as days not in an emergency department, inpatient hospital, or post-acute facility. Secondary outcomes included patients' total VA health care costs, caregiver and patient rating of the patient's experience of VA health care, and caregiver depressive symptoms. Results: Of 241 dyads, caregivers' (patients') mean age was 61 (73) years, 54% (53%) Black and 89% (4%) female. HI-FIVES was associated with a not statistically significant 9% increase in the rate of days at home (95% CI 0.72, 1.65; mean difference 1 day over 12 months). No significant differences were observed in health care costs or caregiver depressive symptoms. Model-estimated mean baseline patient experience of VA care (scale of 0-10) was 8.43 (95% CI 8.16, 8.70); the modeled mean difference between HI-FIVES and controls at 3 months was 0.29 (p = .27), 0.31 (p = 0.26) at 6 months, and 0.48 (p = 0.03) at 12 months. For caregivers, it was 8.34 (95% CI 8.10, 8.57); the modeled mean difference at 3 months was 0.28 (p = .18), 0.53 (p < .01) at 6 months, and 0.46 (p = 0.054) at 12 months. Conclusions: HI-FIVES did not increase patients' days at home; it showed sustained improvements in caregivers' and patients' experience of VA care at clinically significant levels, nearly 0.5 points. The training holds promise in increasing an important metric of care quality-reported experience with care. 

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Effects of Parkinson's on employment, cost of care, and quality of life of people with condition and family caregivers in the UK: a systematic literature review

Background: Parkinson's is an incurable, neuro-degenerative condition with multiple symptoms substantially impacting on living conditions and quality of life (QoL) for people with Parkinson's (PwP), most whom are older adults, and their families. The study aimed to undertake a literature review of studies conducted in the UK that quantify the direct or indirect impact of Parkinson's on people with the condition, their families, and society in terms of out-of-pocket payments and financial consequences.; Methods: Literature was searched for Parkinson's-related terms plus condition impact (eg, financial, employment, pension, housing, health care costs, and QoL) in the UK setting. The strategy probed several electronic databases with all retrieved papers screened for relevancy. The instruments used to measure patient-related outcomes were then examined for their relevancy in justifying the results.; Results: The initial search retrieved 2,143 papers of which 79 were shortlisted through title and abstract screening. A full-text reading indicated 38 papers met the inclusion and quality criteria. Summary data extracted from the articles on focus, design, sample size, and questionnaires/instruments used were presented in four themes: (a) QoL and wellbeing of PwP, (b) QoL and wellbeing of caregivers and family members, (c) employment and living conditions, and (d) direct and indirect health care and societal cost.; Conclusion: UK results substantiated global evidence regarding the deterioration of QoL of PwP as the condition progressed, utilizing numerous measures to demonstrate change. Many spouses and family accept care responsibilities, affecting their QoL and finances too. The review highlighted increased health care and privately borne costs with condition progression, although UK evidence was limited on societal costs of Parkinson's in terms of loss of employment, reduced work hours, premature retirement of PwP and caregivers that directly affected their household budget.

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Economic valuation of informal care provided to people after a myocardial infarction in France

Background: The aim of this study was to estimate the mean cost per caregiver of informal care during the first year after myocardial infarction event in France.; Methods: We used the Handicap-Santé French survey carried out in 2008 to obtain data about MI survivors and their caregivers. After obtaining the total number of informal care hours provided by caregiver during the first year after MI event, we estimated the value of informal care using the proxy good method and the contingent valuation method.; Results: For MI people receiving informal care, an annual mean cost was estimated at €12,404 (SD = 13,012) with the proxy good method and €12,798 (SD = 13,425) with the contingent valuation method per caregiver during the first year after myocardial infarction event.; Conclusions: The present study suggests that informal care should be included more widely in economic evaluations in order not to underestimate the cost of diseases which induce disability.

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Intellectual disability and autism: socioeconomic impacts of informal caring, projected to 2030

Background Intellectual disability and autism spectrum disorder (ASD) influence the interactions of a person with their environment and generate economic and socioeconomic costs for the person, their family and society. Aims To estimate costs of lost workforce participation due to informal caring for people with intellectual disability or autism spectrum disorders by estimating lost income to individuals, lost taxation payments to federal government and increased welfare payments. Method We used a microsimulation model based on the Australian Bureau of Statistics' Surveys of Disability, Ageing and Carers (population surveys of people aged 15–64), and projected costs of caring from 2015 in 5-year intervals to 2030. Results The model estimated that informal carers of people with intellectual disability and/or ASD in Australia had aggregated lost income of AU$310 million, lost taxation of AU$100 million and increased welfare payments of AU$204 million in 2015. These are projected to increase to AU$432 million, AU$129 million and AU$254 million for income, taxation, and welfare respectively by 2030. The income gap of carers for people with intellectual disability and/or ASD is estimated to increase by 2030, meaning more financial stress for carers. Conclusions Informal carers of people with intellectual disability and/or ASD experience significant loss of income, leading to increased welfare payments and reduced taxation revenue for governments; these are all projected to increase. Strategic policies supporting informal carers wishing to return to work could improve the financial and psychological impact of having a family member with intellectual disability and/or ASD.

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Predictors of caregiver burden and care costs for older persons with dementia in Taiwan

Objectives: As a degenerative disease, the progression of dementia needs continued care provision and poses both psychological and financial burden for family caregivers of persons with dementia (PWD). This study seeks to compare predictors of care costs and caregiver burden, and to identify modifiable factors that could alleviate the burden faced by dementia caregivers. Methods: This study interviewed 231 PWD-caregiver dyads in a dementia clinic at a teaching hospital in southern Taiwan in 2013. A follow-up study was conducted a year later, and 167 dyads completed the second interview. Data collected included PWD characteristics, caregiver characteristics, relationship to PWD, and social support to caregivers. Caregiver burden was measured with the Zarit Burden Interview instrument. The association between each predictor variable and cost of care and caregiver burden scores was examined using linear mixed models. Results: Predictors of care costs were found to be different from predictors of caregiver burden: functional declines measured by Katz's activities of daily living (ADL) scale were associated with total cost as compared to behavioral disturbance measured by Neuropsychiatric Inventory (NPI), which showed no impact on care costs. However, NPI was a significant predictor of caregiver burden. Caregivers who were better-off financially also reported significantly lower caregiver burden. Conclusions: Since predictors of care costs were different from the predictors of caregiver burden, providing training to caregivers in addressing PWD's behavioral disturbance and proving financial assistance to low income caregivers could be effective in reducing caregiver burden.

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Costs of Family Caregiving in Palliative Care (COFAC) questionnaire: development and piloting of a new survey tool

BACKGROUND: Family caregivers play an important role in the care of patients receiving palliative care, yet little is known about the financial impact of family caregiving in this context. A lack of existing validated tools for collecting data on the costs of family caregiving in palliative care has resulted in a weak and limited evidence base. The aim of the study was to describe the development and initial piloting of a new survey tool which captures data on the costs of family caregiving in palliative care: the Costs of Family Caregiving (COFAC) questionnaire. METHODS: Development and piloting of the COFAC questionnaire involved 2 phases: (1) questionnaire development based on published evidence and cognitive interviews with service users; and (2) validity testing involving expert review and piloting with bereaved caregivers. RESULTS: Questionnaire content was generated from previously published research and related to work-related costs, carer time costs and out-of-pocket expenses. 2 group cognitive interviews with 15 service users refined content of the draft questionnaire. Face validity was established through expert review with 9 academics and clinicians. Piloting with 8 bereaved caregivers established acceptability and feasibility of administration. CONCLUSIONS: The COFAC tool has been shown to be valid, acceptable to bereaved caregivers and feasible to administer. The COFAC questionnaire is recommended for economic research in palliative care which seeks to capture data from a broad societal perspective which includes family caregiver costs. 

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The direct and indirect financial costs of informal cancer care: A scoping review

Informal caregivers are the primary source of support for cancer patients, providing assistance with household tasks, medical care and emotional support. These responsibilities often result in high levels of emotional, physical, social and financial burden for the caregiver. The aim of this study was to perform a scoping review exploring what is known regarding the financial costs experienced by caregivers and identify gaps in the literature. Seven databases were searched for articles published between May 2008 and May 2018 related to direct and indirect costs of informal cancer care. Included articles reported on the costs incurred by cancer caregivers as a dollar value, relied on caregiver‐reported costs and were peer reviewed. A total of 19 studies met the inclusion criteria. These studies reported out of pocket costs‚ opportunity costs of informal care time and caregiver time loss from paid employment. Care time was the largest source of cancer caregiver costs, averaging $4,809 per month when valued using the proxy good method or $2,877 per month when the opportunity cost approach was used. Caregiver costs were highest when the care recipient was in the palliative phase of the disease. There was an absence of literature reporting costs for cancer caregivers in low and middle income countries and none of the included studies considered costs related to the caregivers' medical expenditures. There were many challenges when comparing the costs across studies due to variations in the type of expenses reported and the methods used to value expenses. Quantifying the financial costs associated with being an informal caregiver can facilitate the communication of the financial burden caregivers experience, potentially spurring the development of policies and programs to reduce their financial burden and better support cancer caregivers.

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Economic costs of informal care for people with chronic diseases in the community: Lost income, extra welfare payments, and reduced taxes in Australia in 2015–2030

We estimated the economic costs of informal care in the community from 2015 to 2030, using an Australian microsimulation model, Care&WorkMOD. The model was based on data from three Surveys of Disability, Ageing, and Carers (SDACs) for the Australian population aged 15–64 years old. Estimated national income lost was AU$3.58 billion in 2015, increasing to $5.33 billion in 2030 (49% increase). Lost tax payments were estimated at AU$0.99 billion in 2015, increasing to AU$1.44 billion in 2030 (45% increase), and additional welfare payments were expected to rise from $1.45 billion in 2015 to AU$1.94 in 2030 (34% increase). There are substantial economic costs both to informal carers and the government due to carers being out of the labour‐force to provide informal care for people with chronic diseases. Health and social policies supporting carers to remain in the labour force may allow governments to make substantial savings, while improving the economic situation of carers.

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Factors associated with long-term impact on informal caregivers during Alzheimer's disease dementia progression: 36-month results from GERAS

Objective: To identify, in caregivers of patients with Alzheimer’s disease (AD) dementia, factors associated with subjective (personal, physical, emotional, and social) and objective (informal caregiver time and costs) caregiver burden. Design: Prospective longitudinal European observational study: post-hoc analysis. Setting: Clinic. Participants: Community-dwelling patients in France and Germany aged ≥ 55 years (n = 969) with probable AD and their informal caregivers. Measurements: Mini-Mental State Examination (MMSE), Alzheimer’s Disease Cooperative Study—Activities of Daily Living (ADCS-ADL), 12-item Neuropsychiatric Inventory (NPI-12), Zarit Burden Interview (ZBI), informal caregiver basic and instrumental ADL hours (Resource Utilization in Dementia instrument), and informal caregiver costs. Mixed-effect models of repeated measures (MMRM) were run, including baseline and time-dependent covariates (change from baseline [CFB] to 18 months in MMSE, ADCS-ADL, and NPI-12 scores) associated with CFB in ZBI score/informal caregiver time over 36 months (analyzed using linear regression models) and informal caregiver costs over 36 months (analyzed using generalized linear models). Results: Greater decline in patient function (ADCS-ADL) over 18 months was associated with increased subjective caregiver burden (ZBI), hours, and costs over 36 months. Increased behavioral problems (NPI-12) over 18 months also negatively impacted ZBI. Cognitive decline (MMSE) over 18 months did not affect change in caregiver burden. Conclusions: Long-term informal caregiver burden was driven by worsening functional abilities and behavioral symptoms but not cognitive decline, over 18 months in community-dwelling patients with AD dementia. Identifying the drivers of caregiver burden could highlight areas in which interventions may benefit both caregivers and patients.

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Work-Related Opportunity Costs Of Providing Unpaid Family Care In 2013 And 2050

Older Americans living in the community who need help with functional limitations overwhelmingly rely on unpaid care, which is often provided by working-age family members. This study assessed the impact of unpaid family caregiving on the likelihood of working and hours worked for caregivers and calculated the related cost of forgone earnings in 2013 and 2050. The current economic cost is about $67 billion, which by midcentury will likely double to $132-$147 billion, fueled primarily by the growth of the disabled older population and the increased share of better-educated caregivers. Average opportunity cost per caregiver will likely increase by 8-20 percent and per US resident by 54-72 percent. Future policy action could benefit from accounting fully for the economic costs in addition to the benefits of unpaid caregiving, which would help better define the scope and size of programs needed to support caregivers. 

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State of Caring 2019: A snapshot of unpaid care in the UK

Carers UK carried out an online survey between March and May 2019. A total of 8,069 carers and former carers responded to the survey – we have only included responses from the 7,525 people who are currently providing care in this report. Compared to the carer population as a whole, respondents to this survey were more likely to be female and caring for a high number of hours every week. Of respondents to the survey:

  • 73% live in England, 10% live in Scotland, 9% live in Northern Ireland, and 8% live in Wales.
  • 81% identify as female and 18% identify as male.
  • 24% consider themselves to have a disability.
  • 1% are aged 0–24, 4% are aged 25–34, 13% are aged 35–44, 30% are aged 45–54, 32% are aged 55– 64, 14% are aged 65–74, and 5% are aged 75 and over. 
  • 3% identified as lesbian, gay or bisexual.
  • 5% described their ethnicity as black or minority ethnic.
  • 20% also have childcare responsibilities for a non-disabled child under 18. 
  • 39% are in paid work. Of those, 47% work full-time and 53% part-time. 
  • 31% have been caring for 15 years or more, 15% for between 10–14 years, 24% for 5–9 years, 26% for 1–4 years, and just 4% have been caring for less than one year. 
  • 46% care for 90 or more hours every week, while 17% care for 50–89 hours, 23% care for 20–49 hours, and 13% care for 1–19 hours a week. 
  • Most (74%) care for one person, 20% care for two people, 5% for three people, and 2% care for four or more people. 

As not all respondents completed every questions in the survey, a number of the figures given in this report, including those presented in this Appendix, are based upon responses from fewer than 7,525 carers. This, together with the sample sizes of different groups, should be taken into consideration when reading the results.

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Do Family Caregivers Offset Healthcare Costs for Older Adults? A Mapping Review on the Costs of Care for Older Adults With Versus Without Caregivers

Background and Objectives: Older adults face significant long-term care and health care costs. But some of these costs can potentially be offset through family caregivers who may serve as substitutes for formal care or directly improve the care recipient’s health and reduce health care utilization and expenditures. This article reviews the current literature to determine whether it is possible through existing work to compare the costs of care for individuals with versus without family caregivers and, if not, where the data, measurement, and other methodological challenges lie. Research Design and Methods: A mapping review of published works containing information on health care utilization and expenditures and caregiving was conducted. A narrative approach was used to review and identify methodological challenges in the literature. Results: Our review identified 47 articles that met our criteria and had information on caregiving and health care costs or utilization. Although findings were mixed, for the most part, having a family caregiver was associated with reduced health care utilization and a decreased risk of institutionalization however, the precise difference in health care expenditures for individuals with caregivers compared to those without was rarely examined, and findings were inconsistent across articles reviewed.  Discussion and Implications: The number of family caregivers providing care to loved ones is expected to grow with the aging of the Baby Boomers. Various programs and policies have been proposed to support these caregivers, but they could be costly. These costs can potentially be offset if family caregivers reduce health care spending. More research is needed, however, to quantify the savings stemming from family caregiving.

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A forgotten Army: Coping as a carer

Unpaid carers are the backbone of our society who often go unrecognised for their dedication and compassion. They face a range of challenges as they attempt to juggle their work-life-care responsibilities. That’s why we decided to commission YouGov to conduct a UK-wide research project focused on identifying gaps in support and sought to understand the views of unpaid carers.

Key findings

The impacts of loneliness, poor mental and physical health, financial worries and a lack of flexibility to learn or train are placing unpaid carers under increasing strain.

  • Two thirds (64%) of carers were most likely to feel the effect of caring on their social life, causing loneliness, which most commonly manifested as a result of having less time to themselves (48%), socialising less (47%) and generally having less contact with others (41%).
  • The next most common impact was mental ill health (49%). This included increased stress (42%), anxiety (33%) and depression (27%).
  • Almost half (45%) mentioned impacts that caring had on their family life, most notably spending less time with family.
  • Two in five carers reported an impact of caring on their physical health, most often mentioning tiredness (35%), trouble in sleeping (28%) and reduced fitness (20%).
  • More than two in five (44%) unpaid carers noted the impact of caring on their financial situation. The qualitative phase of the research also revealed many hidden costs of caring, including paying for medical supplies and transport to and from appointments.
  • Three in ten unpaid carers aged 16-34 said that their education or training had been affected.

When carers were asked about their support needs, a sizable majority (74%) of carers felt that further support in some form would be useful to them, with a common desire for emotional support (33%). Carers also sought information and advice about the support available, respite care, and finances. Our report also found that there was a need for advice about maintaining good mental and emotional health, shining a light on the often unexpected levels of stress, isolation and despondency felt by unpaid carers.

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Comprehensive Support for Family Caregivers: Impact on Veteran Health Care Utilization and Costs

This study aimed to examine the early impact of the Program of Comprehensive Assistance for Family Caregivers (PCAFC) on Veteran health care utilization and costs. A pre-post cohort design including a nonequivalent control group was used to understand how Veterans' use of Veteran Affairs health care and total health care costs changed in 6-month intervals up to 3 years after PCAFC enrollment. The control group was an inverse probability of treatment weighted sample of Veterans whose caregivers applied for, but were not accepted into, PCAFC. Veterans in PCAFC had similar acute care utilization postenrollment when compared with those in the control group, but significantly greater primary, specialty, and mental health outpatient care use at least 30, and up to 36, months postenrollment. Estimated total health care costs for PCAFC Veterans were $1,500 to $3,400 higher per 6-month interval than for control group Veterans. PCAFC may have increased Veterans' access to care.

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The opportunity costs of caring for people with dementia in Southern Spain

Objective: The aim of this paper is to study the opportunity costs (OC) that are involved in being a caregiver and to compare them with the direct costs assumed by the State and the families. We evaluate direct cost (those that imply a payment-out-of-pocket) and indirect cost (those that imply a dedication in time). We hypothesized that costs increase with the severity of the dementia, with the educational level and active occupational situation of caregiver. They are greater if the caregiver is male, but if the patient and caregiver cohabit they are reduced.; Method: 778 surveys were analyzed. Data was collected using a questionnaire specifically designed for the purpose, with the collaboration of Alzheimer's Diseases Associations in Andalusia (Spain). For the indirect cost, we used the reveal preferences method. For the comparison between groups an ANOVA and a MANOVA was done.; Results: The hypotheses were confirmed. The OC exponentially increases with severity. More than 55% of costs are assumed by families. Occupied people have higher educational level and incomes and contract more external support. Costs are significantly higher for male caregivers. Cohabiting reduces all kinds of costs.; Conclusions: The relationship between educational level and employment situation lead to think that if these variables are greater more people will seek professional support. Cultural reasons still maintain women as main caregivers for all educational levels. The existence of these informal caregivers as the main care providers is a saving for the State, and a brake for the development of professional supply.

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Economic and objective burden of caregiving on informal caregivers of patients with systemic vasculitis

Introduction: Systemic vasculitis (SV) is associated with substantial economic impact to patients and the healthcare system but little is known about the burden of SV on informal caregivers. We evaluated the objective caregiving burden experienced by informal caregivers of patients with SV.; Methods: We surveyed adult patients and their informal caregivers on the physical, emotional, social and economic impacts of SV. We asked patients about the extent to which they felt they were a burden to their identified caregivers. Caregivers reported the direct and indirect economic impact of SV, including employment disturbance, income loss and relative time investment of caregiving for their care recipient's SV. We used the Inventory of Caregiving Activities Questionnaire to compute the objective caregiving burden.; Results: We analysed data from 68 SV patient-caregiver dyads. Patients reported moderate levels of subjective burden to their caregivers. Over one-quarter of caregivers reported ever having lost some income owing to caregiving for SV. Caregivers reported spending a median of 19 weekly hours on various caregiving tasks, including a median 17 weekly hours on household activities.; Discussion: Given the extended hours that caregivers spend caring for their care recipient, intervention targets should aim to reduce caregiver burnout in the SV population. Future research should examine the relationship between the objective burden of caregiving for SV and the overall physical health, mental health and quality of life of caregivers.

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Family and Caregiver Spillover Effects in Cost-Utility Analyses of Alzheimer's Disease Interventions

Background and Objective: Alzheimer's disease or dementia can impose a significant burden on family and other informal caregivers. This study investigated how the inclusion of family/informal caregiver spillover effects in a cost-utility analysis may influence the reported value of Alzheimer's disease/dementia interventions. Methods: We used PubMed to identify Alzheimer's disease or dementia cost-utility analyses published from 1 January, 2000 to 31 March, 2018. We reviewed and abstracted information from each study using a two-reader consensus process. We investigated the frequency and methods in which family/caregiver spillover costs and health effects were incorporated into cost-utility analyses, and examined how their inclusion may influence the reported incremental cost-effectiveness ratios. Results: Of 63 Alzheimer's disease/dementia cost-utility analyses meeting inclusion criteria, 44 (70%) considered at least some family/caregiver spillover costs or health effects. Thirty-two studies incorporated spillover costs only, two incorporated spillover health effects only, and ten incorporated both. The most common approach for accounting for spillover was adding informal caregiving time costs to patient costs (n = 36) and adding informal caregiver quality-adjusted life-years to patient values (n = 7). In a subset of 33 incremental cost-effectiveness ratio pairs from 19 studies, incorporating spillover outcomes made incremental cost-effectiveness ratios more favorable (n = 15; 45%) or kept the intervention cost saving (n = 13; 39%) in most cases. In fewer cases, including spillover increased incremental cost-effectiveness ratios (n = 2; 6%), kept the intervention dominated [more costs/less quality-adjusted life-years] (n = 2; 6%), or changed incremental cost-effectiveness ratio from dominated to less cost/less quality-adjusted life-years (n = 1; 3%). In 11 cases (33%), adding spillover effects into analyses resulted in a lower incremental cost-effectiveness ratio that crossed a common cost-effectiveness threshold, which could have downstream implications for programs or policies that are adopted based on cost-effectiveness analysis results. Discussion: Most Alzheimer's disease/dementia cost-utility analyses incorporated spillover costs, often as caregiver time costs, but considered spillover health impacts less often. In about 85% of the analyses, including Alzheimer's disease/dementia spillover cost or health effects decreased incremental cost-effectiveness ratios or kept the intervention cost saving. The broader value of an Alzheimer's disease/dementia intervention to society may in some cases be underestimated without considering these spillover effects on family and informal caregivers.

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Dementia Family Caregivers' Willingness to Pay for an In-home Program to Reduce Behavioral Symptoms and Caregiver Stress

Objectives: Our objective was to determine whether family caregivers of people with dementia (PwD) are willing to pay for an in-home intervention that provides strategies to manage behavioral symptoms and caregiver stress and to identify predictors of willingness-to-pay (WTP).; Methods: During baseline interviews of a randomized trial and before treatment assignment, caregivers were asked how much they were willing to pay per session for an eight-session program over 3 months. We stratified the sample into those who refused to provide a WTP, those willing to pay $US0, and those willing to pay > $US0. We used a two-part model, controlling for demographic characteristics, to predict adjusted mean WTP and to examine associations between WTP, clinical features (cognition, function, behavioral symptoms), and time spent assisting PwD with daily activities. First, we used logistic regression to model the probability a caregiver was willing to pay > $US0. Second, we used a generalized linear model (log link and Gamma distribution) to estimate the amount caregivers were willing to pay conditional on WTP > $US0.; Results: Of 250 dyads enrolled, 226 (90%) had complete data and were included in our analyses. Of 226 dyads, 26 (11%) refused to provide a WTP value, 72 (32%) were willing to pay $US0, and 128 (57%) were willing to pay > $US0. In the combined model, mean adjusted WTP was $US36.00 (95% confidence interval [CI] 26.72-45.27) per session. Clinical features were not significantly associated with WTP. One additional hour providing PwD assistance was associated with a $US1.64 (95% CI 0.23-3.04) increase in WTP per session.; Conclusion: As caregivers spend more time assisting with daily activities, they are willing to pay more for a supportive program.; Clinical Trial Registration Number: NCT01892579.

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Quantifying Family Spillover Effects in Economic Evaluations: Measurement and Valuation of Informal Care Time

Spillover effects on the welfare of family members may refer to caregiver health effects, informal care time costs, or both. This review focuses on methods that have been used to measure and value informal care time and makes suggestions for their appropriate use in cost-of-illness and cost-effectiveness analyses. It highlights the importance of methods to value informal care time that are independent of caregiver health effects in order to minimize double counting of spillover effects. Although the concept of including caregiver time costs in economic evaluations is not new, relatively few societal perspective cost-effectiveness analyses have included informal care, with the exception of dementia. This is due in part to challenges in measuring and valuing time costs. Analysts can collect information on time spent in informal care or can assess its impact in displacing other time use, notably time in paid employment. A key challenge is to ensure appropriate comparison groups that do not require informal care to be able to correctly estimate attributable informal care time or foregone market work. To value informal care time, analysts can use estimates of hourly earnings in either opportunity cost or replacement cost approaches. Researchers have used widely varying estimates of hourly earnings. Alternatively, stated-preference methods (i.e. contingent valuation, conjoint analysis) can be used to value the effect of informal care on utility, but this can entail double counting with health effects. Lack of consensus and standardization of methods makes it difficult to compare estimates of informal care costs. 

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Costs of formal and informal care at home for people with dementia: 'Expert panel' opinions from staff and informal carers

Effective home support in dementia is key in delaying nursing home admission. However, home support is frequently not tailored to the individual needs of people with dementia. Staff allocating home support services may not identify important care needs, which only be recognised by informal carers. The purpose of this study was to explore the balance of informal and formal home support and their associated costs from the perspectives of both informal carers and paid staff. Five case vignettes of people with dementia were designed based on an existing English data set from a European study into transition into long-term care (the RightTimePlaceCare programme), representing 42 per cent of the English sample. In total, 14 informal carers and 14 paid staff were consulted in separate groups, as expert panels, regarding their recommendations for home care services for each vignette. Care recommendations of carers and staff were costed based on nationally available unit costs and compared. Informal carers allocated fewer hours of care than staff. Personal and domestic home care and day care centres were the most frequently recommended formal services by both groups, and some vignettes of people with dementia were recommended for care home admission. The ratio of costs of informal versus formal support was relatively equal for paid staff, yet unbalanced from the perspectives of informal carers with a greater proportion of formal care costs. Recommendations from this study can help shape dementia care to be more tailored to the individual needs of people with dementia and their carers.

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Shifts in Family Caregiving--and a Growing Care Gap

As baby boomers approach old age, many factors may be driving a growing divide between the demand for family caregivers and the number of available caregivers. This article highlights trends in family caregiving and changing patterns of family life that challenge the family's capacity to carry out its traditional functions in long-term services and supports (LTSS), describes the high cost of LTSS (including out-of-pocket spending), illuminates the future care gap, and explains the implications of these trends in the context of providing and paying for LTSS.

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How Much Is This Going to Cost? Inviting the Math Club to the Table

Projection models enable users to assess the costs and benefits of changes to long-term services and supports policies and to compare policy options, using a consistent set of underlying assumptions. Outlined are key challenges model developers face, including data limitations, difficulties anticipating potential behavioral responses, the need to assign appropriate benchmarks, the value of family care and intangibles like autonomy and quality of life, and grappling with uncertainty. The authors also detail substantive lessons learned about policy and describe modeling best practices, including sensitivity analyses. 

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The hidden cost of informal care: An empirical study on female caregivers' subjective well-being

Using data from the China Health and Nutrition Survey (CHNS), this study investigated the impact of informal care on female caregivers' subjective well-being in China. We found that informal care significantly reduced the subjective well-being of female caregivers using the instrumental variable (IV) ordered probit model. Our results revealed that the care effect on subjective well-being was more significant for rural caregivers than for urban caregivers. The more hours or more recipients care was provided for, the greater the negative impact on subjective well-being. Based on these findings, we further identified the two channels of 'wealth' and 'health' through which informal care lowered subjective well-being. These results have implications for policy makers in overcoming the challenges involved in constructing and developing a supportive system of informal care in China. Highlights • Informal care significantly reduced the subjective well-being of female caregivers. • Care effects on subjective well-being were more significant for rural caregivers. • The more care given, the larger the negative impact on subjective well-being. • Caregiving reduced subjective well-being through lower wealth and worse health.

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A 'gaping hole' in US health care? Millions of caregivers are overlooked

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.

Investment in Australian mental health carer services: how much and does it reflect evidence of effectiveness?

Objective The aims of this study were to quantify Australian federal and state government expenditure on mental health carer services for 2014-15, map the types of services being provided and explore how funded service types compare with the evidence base for the outcomes of these carer services. Methods Web searches were conducted to identify in-scope mental health carer services in Australia funded by federal and state and territory governments. Funding estimates were confirmed where possible with available government and carer organisation contacts. A literature search was conducted for reviews of studies investigating mental health carer service outcomes. Results In 2014-15, the estimated Australian national, state and territory government expenditure on mental health carer services was approximately A$90.6 million. This comprised A$65.6 million in federal expenditure and A$25.0 million in state and territory expenditure. Most funding streams provided respite and psychoeducation. The literature showed positive carer outcomes for psychoeducation and intensive family interventions. Evidence was lacking for the effectiveness of respite services. Conclusions These findings suggest a mismatch between what is known about the extent to which different service types deliver positive carer outcomes and the current allocation of funds across Australia's mental health system. This study also highlights the fragmentation of the mental health carer services system, supporting the need to streamline access.

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Family Caregiving and the Intergenerational Transmission of Poverty

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.

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The Cost of Caring: Economic Vulnerability, Serious Emotional Distress, and Poor Health Behaviors Among Paid and Unpaid Family and Friend Caregivers

This study examined differences between paid and unpaid family/friend caregivers to better understand the consumer-driven caregiving workforce. We compared economic vulnerability, unhealthy behavior, and serious emotional distress for 475 paid and 10,500 unpaid family/friend informal caregivers from the 2009 California Health Interview Survey. We then estimated whether caregiver status moderated the relationship between economic vulnerability and health outcomes. Compared to unpaid family/friend caregivers, paid family/friend caregivers had a 27% greater risk ( p = .002) of economic vulnerability. Among all family/friend caregivers, the probabilities of serious emotional distress and unhealthy behaviors increased by >100% and 28% for those with the greatest compared to the least economic vulnerability, and caregiver type did not moderate these relationships. To address economic and health vulnerabilities of paid informal caregivers, policy makers might increase wages in consumer-driven programs. These changes could prove beneficial to both paid informal caregivers and their care recipients, while reducing long-term inefficiencies in consumer-driven programs.

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A Comprehensive Measure of the Costs of Caring for a Parent: Differences According to Functional Status

Approximately 34 million family and friends provided unpaid care to individuals aged 50 and older in 2015. It is difficult to place a value on that time, because no payment is made to the caregiver, and multiplying caregiving hours by a wage does not account for the value of lost leisure time, implications for future employability and wages, or any intrinsic benefits accrued to the care provider. This study used a dynamic discrete choice model to estimate the costs of informal care provided by a daughter to her mother, including these other costs and benefits not typically accounted for, and compared these cost estimates for 4 categories of the mother's functional status: doctor-diagnosed memory-related disease, limitations in activities of daily living (ADLs), combination of both, cannot be left alone for 1 hour or more. We studied women aged 40 to 70 with a living mother at the start of the sample period (N=3,427 adult daughters) using data from the Health and Retirement Study (1998-2012). The primary outcome was the monetized change in well-being due to caregiving, what economists call "welfare costs." We estimate that the median cost to the daughter's well-being of providing care to an elderly mother ranged from $144,302 to $201,896 over 2 years, depending on the mother's functional status. These estimates suggest that informal care cost $277 billion in 2011, 20% more than estimates that account only for current foregone wages.

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When and how should relatives be paid through a direct payment?

Family members are delivering unpaid care to loved-ones because direct payments are insufficient to hire staff, writes Belinda Schwehr. 

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Growth of Shared Lives placements slows

Umbrella body Shared Lives Plus calls for national awareness raising campaign to help boost carer numbers. 

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Survivorship burden for individuals, households and society : estimates and methodology

With more and more individuals surviving cancer it is important to estimate the economic burden survivorship places on these individuals, and also on their friends, family, carers and the wider society. This paper provides a review of current estimates of the cost of living with and surviving cancer. Few studies have provided an all-encompassing estimate of the burden. A range of methodologies to estimate the direct health care costs, direct non-health care costs, productivity loss and informal care costs of surviving cancer are described. Additionally an often overlooked burden that on survivors' and caregivers' quality of life is also discussed. This paper hopes to encourage more research on the economic burden of cancer survivorship to aid policy makers in their resource allocation decisions and help establish an ongoing research agenda. 

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Who cares? The implications of informal care and work for policy makers and employers

Outlines some of the implications associated with the growing number of informal carers in the UK, the health and social care system's increasingly unsustainable reliance on them, and what Government and employers can do about it. The report is informed by the academic and grey literature, as well as views from a workshop attended by over 30 stakeholders from government and non-government bodies, individual carers, carers charities, think tanks, and businesses. The report looks at the increase in the number of informal carers in the UK, the financial and health implications of caring, and the challenge for policy makers and employers as carers become an increasing percentage of an ageing workforce. The report makes recommendations for Government, policymakers and business. The recommendations offer practical guidance on how to improve employment outcomes for carers, and which will also help to tackle the financial and health problems carers face. The recommendations focus on four themes: workplace flexibility; statutory leave; workplace support; and returning to work.

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Projected Costs of Informal Caregiving for Cardiovascular Disease: 2015-2035

Introduction: In a recent report, the American Heart Association estimated that medical costs and productivity losses of cardiovascular disease (CVD) are expected to grow from $555 billion in 2015 to $1.1 trillion in 2035. Although the burden is significant, the estimate does not include the costs of family, informal, or unpaid caregiving provided to patients with CVD. In this analysis, we estimated projections of costs of informal caregiving attributable to CVD for 2015 to 2035. Methods: We used data from the 2014 Health and Retirement Survey to estimate hours of informal caregiving for individuals with CVD by age/sex/race using a zero-inflated binomial model and controlling for sociodemographic factors and health conditions. Costs of informal caregiving were estimated separately for hypertension, coronary heart disease, heart failure, stroke, and other heart disease. We analyzed data from a nationally representative sample of 16 731 noninstitutionalized adults ≥54 years of age. The value of caregiving hours was monetized by the use of home health aide workers’ wages. The per-person costs were multiplied by census population counts to estimate nation-level costs and to be consistent with other American Heart Association analyses of burden of CVD, and the costs were projected from 2015 through 2035, assuming that within each age/sex/racial group, CVD prevalence and caregiving hours remain constant. Results: The costs of informal caregiving for patients with CVD were estimated to be $61 billion in 2015 and are projected to increase to $128 billion in 2035. Costs of informal caregiving of patients with stroke constitute more than half of the total costs of CVD informal caregiving ($31 billion in 2015 and $66 billion in 2035). By age, costs are the highest among those 65 to 79 years of age in 2015 but are expected to be surpassed by costs among those ≥80 years of age by 2035. Costs of informal caregiving for patients with CVD represent an additional 11% of medical and productivity costs attributable to CVD. Conclusions: The burden of informal caregiving for patients with CVD is significant; accounting for these costs increases total CVD costs to $616 billion in 2015 and $1.2 trillion in 2035. These estimates have important research and policy implications, and they may be used to guide policy development to reduce the burden of CVD on patients and their caregivers.

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Responsibility for child and elderly care: who should cover the costs? A comparison of Baltic and Nordic countries

Using data from the International Social Survey Programme (2012), this study compares public attitudes towards who should cover the costs of caring for children and older people in five Nordic countries (Finland, Sweden, Norway, Iceland and Denmark) and two Baltic ones (Latvia and Lithuania). The study found interesting differences between both groups of nations: citizens from Baltic countries consider the role of the family more important than their counterparts in Nordic countries. Results show Latvians holding the most familistic views in terms of covering costs, and Swedish people the least. Individual socio-demographic variables are less important than national contexts in explaining these attitudes. The article finds important variations among the social-democratic countries and, surprisingly, in the case of childcare, Sweden shows higher differences to Denmark than to Latvia and Lithuania. This finding suggests that the social-democratic bloc in this respect is more heterogeneous than what is generally thought.

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Variations in the cost of formal and informal health care for patients with advanced chronic disease and refractory breathlessness: A cross-sectional secondary analysis

Background: Refractory breathlessness in advanced chronic disease leads to high levels of disability, anxiety and social isolation. These result in high health-resource use, although this is not quantified. Aims: To measure the cost of care for patients with advanced disease and refractory breathlessness and to identify factors associated with high costs. Design: A cross-sectional secondary analysis of data from a randomised controlled trial. Setting/participants: Patients with advanced chronic disease and refractory breathlessness recruited from three National Health Service hospitals and via general practitioners in South London. Results: Of 105 patients recruited, the mean cost of formal care was £3253 (standard deviation £3652) for 3 months. The largest contributions to formal-care cost were hospital admissions (>60%), and palliative care contributed <1%. When informal care was included, the total cost increased by >250% to £11,507 (standard deviation £9911). Increased patient disability resulting from breathlessness was associated with high cost (£629 per unit increase in disability score; p = 0.006). Increased breathlessness on exertion and the presence of an informal carer were also significantly associated with high cost. Patients with chronic obstructive pulmonary disease tended to have higher healthcare costs than other patients. Conclusion: Informal carers contribute significantly to the care of patients with advanced disease and refractory breathlessness. Disability resulting from breathlessness is an important clinical cost driver. It is important for policy makers to support and acknowledge the contributions of informal carers. Further research is required to assess the clinical- and cost-effectiveness of palliative care interventions in reducing disability resulting from breathlessness in this patient group.

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Care-related Out-of-Pocket Spending and Caregiving Consequences: Results from a Canadian Population-based Study

This study focused on out-of-pocket expenditures resulting from providing unpaid care to family members, friends, and neighbours. The main objective was to examine whether care-related out-of-pocket spending has a significant independent effect on caregiving consequences after controlling for the effects of other potential contributing factors. Cross-sectional data from the 2007 General Social Survey were used. Descriptive analyses and multivariate regression modeling were conducted. We found that an estimated 42.3% of the Canadian caregivers reported experiencing at least one of the six caregiving consequences. Results also showed that out-of-pocket spending was significantly associated with increased odds of caregiving consequences for men and women. This finding highlights the urgent need for policies and programs to support family/friend caregivers.

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The Valuation of Informal Care in Cost-of-Illness Studies: A Systematic Review

There is a growing interest in incorporating informal care in cost-of-illness studies as a relevant part of the economic impact of some diseases. The aim of this paper was to review the recent literature valuating the costs of informal care in a group of selected diseases from 2005 to 2015. We carried out a systematic review on the economic impact of informal care, focusing on six selected diseases: arthritis or osteoarthritis, cancer, dementia, mental diseases, multiple sclerosis and stroke. We selected 91 cost-of-illness articles. The average weight attributed to the informal care cost over the total cost was highly relevant for dementia, stroke, mental diseases, cancer and multiple sclerosis. The most frequent valuation method applied was the opportunity cost method, followed by the proxy good method. The annual cost of informal care presented a high variability depending on the disease and geographic location. Distinguishing by type of illness, the disease with the highest annual value of informal caregiving was dementia, followed by mental illness and multiple sclerosis. The average hourly unit cost was €11.43 (2015 values), varying noticeably depending on the geographic location. This paper identifies several aspects that should be enhanced to promote comparability between studies and countries, and it sends key messages for incorporating informal care costs to adequately measure the economic impact of diseases.

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Public expenditure costs of carers leaving employment in England, 2015/2016

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.

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Caregiving, Employment and Social Isolation: Challenges for Rural Carers in Australia

Australia has one of the world’s highest life expectancy rates, and there is a rapidly growing need for informal caregivers to support individuals who are ageing, have chronic illness or a lifelong disability. These informal carers themselves face numerous physical and psychological stressors in attempting to balance the provision of care with their personal life, their work commitments and family responsibilities. However, little is known about the specific challenges facing rural carers and the barriers that limit their capacity to provide ongoing support. A cross-sectional survey composed of open-ended responses and demographic/socioeconomic measures used routinely by the Australian Bureau of Statistics (ABS) and the Australian Institute of Health & Welfare (AIHW) was used with a cohort of 225 rurally-based carers within New South Wales, Australia. Demographic questions specified the respondents’ age, gender, employment, caregiving status, condition of and relationship to the care recipient, postcode, residency status, and distance and frequency travelled to provide care. Open-ended comments sections were provided to allow participants to describe any issues and problems associated with caregiving including employment, travel, residency, carer support groups and any other general information. The results show that most rural carers were middle-aged women supporting a spouse or a child. Unpredictability associated with providing care exacerbated demands on carers’ time, with many reporting significant employment consequences associated with inflexibility and limited job options in rural locations. Specific issues associated with travel requirements to assist with care were reported, as were the impacts of care provision on the respondents’ own personal health. The majority of carers were aware of the social supports available in their local rural community, but did not access them, leaving the carers vulnerable to marginalisation. Problems associated with employment were noted as resulting in financial pressures and associated personal stress and anxiety for the caregivers. While this issue is not necessarily limited to rural areas, it would appear that the lack of opportunity and flexibility evident in rural areas would exacerbate this problem for non-metropolitan residents. The participants also identified specific barriers to the provision of care in rural areas, including the significant impact of travel. Access to support services, such as carer groups, were rarely accessed due to a mix of factors including inaccessibility, poor timing and a lack of anonymity. Financially, there was considerable evidence of hardship, and there is an urgent need for a comprehensive review of government and community-based support to better meet the needs of rural carers.

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Young-onset Alzheimer dementia: a comparison of Brazilian and Norwegian carers' experiences and needs for assistance

Objectives: Although dementia typically occurs in older people, it can also emerge in people aged younger than 65 years in the form of young‐onset dementia, the most common type of which is Alzheimer's disease (AD). However, few studies have examined the needs of persons with young‐onset AD (YO‐AD) and their families, and cross‐cultural research on the topic is even scarcer. In response, we investigated the situations, experiences and needs for assistance of carers of persons with YO‐AD in Brazil and Norway. Methods: As part of our qualitative study, we formed a convenience sample of Brazilian (n = 9; 7 women) and Norwegian carers (n = 11; 6 women) in 2014 and 2015, respectively, and analysed data in light of a modified version of grounded theory. Results: Carers' narratives from both countries revealed five common themes in terms of how YO‐AD affected carers' psychological and emotional well‐being, physical well‐being, professional and financial well‐being, social lives and need for support services. Conclusions: The infrequent differences between carers of persons with YO‐AD in Brazil and Norway indicate that carers' problems are highly similar regardless of cultural differences and public services provided. 

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Legal & General demands help for informal carers

Legal & General is championing for change after learning the UK's informal carers are contributing the equivalent of billions of pounds to meet the care needs of relatives and friends.

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Experiences of patient-family caregiver dyads in palliative care during hospital-to-home transition process

Background: there are many people with advanced cancer who are cared for in the community, though little is known about patients' and family members' lived experiences during discharge from hospital to home. Objectives: to describe the experiences of the patient-family caregiver dyad during the transition from hospital to home at a National Cancer Institute in Colombia. Methods: a descriptive phenomenological approach was taken for this study. Results: Forty-one nominal codes emerged, comprising seven themes that describe the experience of the individual in palliative care and their family caregiver during the transition from hospital to home care. Conclusions: the patient-family caregiver dyad have to deal with symptoms while being confronted with the prognosis and progression of the disease at home. The economic costs in acquiring supplies needed for proper care provision are considerable. In addition there are administrative fees from consultations and accessing the health services. Emotional and spiritual support for the dyad is required. 

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Caregivers for older adults: Prevalence, characteristics, and health care utilization and expenditures

The purpose of this study was to provide an overview of caregiver prevalence and characteristics and to estimate the impact of caregiving on health care utilization and expenditures among AARP® Medicare Supplement insureds to inform caregiver intervention strategies. A subgroup with live-in partners was used to investigate the additional effect of live-in health status on caregiver health. Multivariate regression models were utilized to determine caregivers' characteristics and associated impacts on their health care utilization and expenditures. Among respondents (n = 18,928), 14.9% self-identified as caregivers. The strongest characteristics included being younger, healthier, but reporting depression or loneliness. Caregivers of sicker live-ins were female, older and indicated moderate loneliness caregivers of healthier live-ins were younger, healthier, but reported severe loneliness. Caregivers had significantly lower inpatient admissions and medical and prescription drug expenditures. These results indicated an adverse impact on psychological health associated with caregiving but no evidence of a negative impact on physical health. 

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The contributions of family care-givers at end of life: A national post-bereavement census survey of cancer carers’ hours of care and expenditures

Background: Family members provide vital care at end of life, enabling patients to remain at home. Such informal care contributes significantly to the economy while supporting patients’ preferences and government policy. However, the value of care-givers’ contributions is often underestimated or overlooked in evaluations. Without information on the activities and expenditures involved in informal care-giving, it is impossible to provide an accurate assessment of carers’ contribution to end-of-life care. Aim: The aim of this study was to investigate the contributions and expenditure of informal, family care-giving in end-of-life cancer care. Design: A national census survey of English cancer carers was conducted. Survey packs were mailed to 5271 people who registered the death of a relative to cancer during 1–16 May 2015. Data were collected on decedents’ health and situation, care support given, financial expenditure resulting from care, carer well-being and general background information. Results: In all, 1504 completed surveys were returned (28.5%). Over 90% of respondents reported spending time on care-giving in the last 3 months of the decedent’s life, contributing a median 69 h 30 min of care-giving each week. Those who reported details of expenditure (72.5%) spent a median £370 in the last 3 months of the decedent’s life. Conclusion: Carers contribute a great deal of time and money for day-to-day support and care of patients. This study has yielded a unique, population-level data set of end-of-life care-giving and future analyses will provide estimates of the economic value of family care-givers’ contributions.

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Long-term cost of spouses' informal support for dependent midlife stroke survivors

Objectives: Stroke is a major global disease that requires extensive care and support from society and relatives. The aim of this study was to identify and quantify the long‐term informal support and to estimate the annual cost of informal support provided by spouses to their stroke surviving partner. Method: Data were based on the 7‐year follow‐up of the Sahlgrenska Academy Study on Ischemic Stroke. One‐third of the spouses stated that they provided support to their stroke surviving partner. The magnitude of the support was assessed with a study‐specific time‐diary and was estimated for independent and dependent stroke survivors based on the scores of the modified Rankin Scale. To deal with skewed data, a two‐part econometric model was used to estimate the annual cost of informal support. Result: Cohabitant dyads of 221 stroke survivors aged <70 at stroke onset were included in the study. Spouses of independent stroke survivors (n = 188) provided on average 0.15 hr/day of practical support and 0.48 hr/day of being available. Corresponding figures for spouses of dependent stroke survivors (n = 33) were 5.00 regarding practical support and 9.51 regarding being available. The mean annual cost of informal support provided for independent stroke survivors was estimated at €991 and €25,127 for dependent stroke survivor. Conclusion: The opportunity cost of informal support provided to dependent midlife stroke survivors is of a major magnitude many years after stroke onset and should be considered in economic evaluations of health care.

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Sustainability of Long-term Care: Puzzling Tasks Ahead for Policy-Makers

Background: The sustainability of long-term care (LTC) is a prominent policy priority in many Western countries. LTC is one of the most pressing fiscal issues for the growing population of elderly people in the European Union (EU) Member States. Country recommendations regarding LTC are prominent under the EU’s European Semester.  Methods: This paper examines challenges related to the financial- and organizational sustainability of LTC systems in the EU. We combined a targeted literature review and a descriptive selected country analysis of: (1) public- and private funding; (2) informal care and externalities; and (3) the possible role of technology in increasing productivity. Countries were selected via purposive sampling to establish a cohort of country cases covering the spectrum of differences in LTC systems: public spending, private funding, informal care use, informal care support, and cash benefits.  Results: The aging of the population, the increasing gap between availability of informal care and demand for LTC, substantial market failures of private funding for LTC, and fiscal imbalances in some countries, have led to structural reforms and enduring pressures for LTC policy-makers across the EU. Our exploration of national policies illustrates different solutions that attempt to promote fairness while stimulating efficient delivery of services. Important steps must be taken to address the sustainability of LTC. First, countries should look deeper into the possibilities of complementing public- and private funding, as well as at addressing market failures of private funding. Second, informal care externalities with spill-over into neighboring policy areas, the labor force, and formal LTC workers, should be properly addressed. Thirdly, innovations in LTC services should be stimulated to increase productivity through technology and process innovations, and to reduce costs.  Conclusion: The analysis shows why it is difficult for EU Member State governments to meet all their goals for sustainable LTC, given the demographic- and fiscal circumstances, and the complexities of LTC systems. It also shows the usefulness to learn from policy design and implementation of LTC policy in other countries, within and outside the EU. Researchers can contribute by studying conditions, under which the strategies explored might deliver solutions for policy-makers

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Social/economic costs and health-related quality of life in patients with spinal muscular atrophy (SMA) in Spain

Background: The aim of this study was to determine the economic burden and health-related quality of life (HRQOL) of patients with Spinal Muscular Atrophy (SMA) and their caregivers in Spain. Methods: This was a cross-sectional and retrospective study of patients diagnosed with SMA in Spain. We adopted a bottom up, prevalence approach design to study patients with SMA. The patient’s caregivers completed an anonymous questionnaire regarding their socio-demographic characteristics, use of healthcare services and non-healthcare services. Costs were estimated from a societal perspective (including healthcare costs and non-healthcare costs), and health-related quality of life (HRQOL) was assessed using the EQ-5D questionnaire. The main caregivers also answered a questionnaire on their characteristics and on their HRQOL. Results: A total of 81 caregivers of patients with different subtypes of SMA completed the questionnaire. Based on the reference unitary prices for 2014, the average annual costs per patient were € 33,721. Direct healthcare costs were € 10,882 (representing around 32.3% of the total cost) and the direct non-healthcare costs were € 22,839 (67.7% of the total cost). The mean EQ-5D social tariff score for patients was 0.16, and the mean score of the EQ-5D visual analogue scale was 54. The mean EQ-5D social tariff score for caregivers was 0.49 and their mean score on the EQ-5D visual analogue scale was 69. Conclusion: The results highlight the burden that SMA has in terms of costs and decreased HRQOL, not only for patients but also for their caregivers. In particular, the substantial social/economic burden is mostly attributable to the high direct non-healthcare costs.

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Informal Care Time and Cost in a Large Clinical Trial Sample of Patients with Mild to Moderate Alzheimer’s Disease: Determinants and Level of Change Observed

Introduction: We evaluate the association between caregiver (informal) time/cost and illness severity from two recently completed clinical trials of an investigational drug for Alzheimer’s disease (AD). Methods: Changes from baseline caregiver time were calculated and treatment effects analyzed using a restricted maximum likelihood-based mixed model for repeated measures. Four separate models were then estimated to examine the association between caregiver time costs and the clinical endpoints measured during the trials, including cognition (MMSE), function (DAD), behavior (NPI), global disability (CDR) and dependence (DS). Results: Caregiver time cost was significantly associated with all clinical measures of illness severity with a 1-unit change in MMSE, DAD, NPI, CDR and DS associated with a 11.57%, 4.81–4.97%, 3.58–3.67%, 42.52% and 71.05% change, respectively, in primary caregiver time cost. The association between caregiver time cost and DS was the strongest of all the associations examined. Conclusion: Caregiver time costs increase with increasing AD severity in all key domains of AD (cognition, function, behavior, global disability and dependence on others). Our analysis demonstrated that patient dependence is a particularly important predictor of caregiver time costs and should be considered as a potential outcome measure in intervention clinical trials in AD. Funding: Pfizer Inc. and Janssen Alzheimer Immunotherapy Research and Development.

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Update of the Dutch manual for costing studies in health care

Objectives: Dutch health economic guidelines include a costing manual, which describes preferred research methodology for costing studies and reference prices to ensure high quality studies and comparability between study outcomes. This paper describes the most important revisions of the costing manual compared to the previous version. Methods: An online survey was sent out to potential users of the costing manual to identify topics for improvement. The costing manual was aligned with contemporary health economic guidelines. All methodology sections and parameter values needed for costing studies, particularly reference prices, were updated. An expert panel of health economists was consulted several times during the review process. The revised manual was reviewed by two members of the expert panel and by reviewers of the Dutch Health Care Institute. Results: The majority of survey respondents was satisfied with content and usability of the existing costing manual. Respondents recommended updating reference prices and adding some particular commonly needed reference prices. Costs categories were adjusted to the international standard: 1) costs within the health care sector; 2) patient and family costs; and 3) costs in other sectors. Reference prices were updated to reflect 2014 values. The methodology chapter was rewritten to match the requirements of the costing manual and preferences of the users. Reference prices for nursing days of specific wards, for diagnostic procedures and nurse practitioners were added. Conclusions: The usability of the costing manual was increased and parameter values were updated. The costing manual became integrated in the new health economic guidelines.

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Cost of informal care for patients with cardiovascular disease or diabetes: current evidence and research challenges

Purpose: Patients with cardiovascular disease (CVD) or diabetes often require informal care. The burden of informal care, however, was not fully integrated into economic evaluation. We conducted a literature review to summarize the current evidence on economic burden associated with informal care imposed by CVD or diabetes. Methods: We searched EconLit, EMBASE, and PubMed for publications in English during the period of 1995–2015. Keywords for the search were informal care cost, costs of informal care, informal care, and economic burden. We excluded studies that (1) did not estimate monetary values, (2) examined methods or factors affecting informal care, or (3) did not address CVD or diabetes. Results: Our search identified 141 potential abstracts, and 10 of the articles met our criteria. Although little research has been conducted, studies used different methods without much consensus, estimates suffered from recall bias, and study samples were small, the costs of informal care have been found high. In 2014 US dollars, estimated additional annual costs of informal care per patient ranged from $1563 to $7532 for stroke, $860 for heart failure, and $1162 to $5082 for diabetes. The total cost of informal care ranged from $5560 to $143,033 for stoke, $12,270 to $20,319 for heart failure, and $1192 to $1321 for diabetes. Conclusions: The costs of informal care are substantial, and excluding them from economic evaluation would underestimate economic benefits of interventions for the prevention of CVD and diabetes.

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Economic burden of informal care attributable to stroke among those aged 65 years or older in China

Stroke is a leading cause of disability in China, frequently resulting in the need for informal care. No information, however, is available on costs of informal care associated with stroke, required to understand the true cost of stroke in China. Using the 2011 China Health and Retirement Longitudinal Study, we identified 4447 respondents aged ≥65 years suitable for analyses, including 184 stroke survivors. We estimated the economic burden of informal care associated with stroke using a two-part model. The monthly number of hours of informal caregiving associated with stroke was 29.2 h/stroke survivor, and the average annual cost of informal care associated with stroke was 10,612 RMB per stroke survivor. The findings stress the necessity of proper interventions to prevent stroke and will be useful for estimating the economic burden of stroke.

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The cost of dementia in an unequal country: The case of Chile

We study the economic cost of dementia in Chile, and its variation according to socioeconomic status (SES). We use primary data from a survey of 330 informal primary caregivers who completed both a RUD-Lite and a socio-demographic questionnaire to evaluate the severity of dementia and caregiver’s burden. The costs of dementia are broken into three components: direct medical costs (medical care, drugs, tests); direct social costs (social service, daycare); and indirect costs (mostly associated to informal care). The average monthly cost per patient is estimated at US$ 1,463. Direct medical costs account for 20 per cent, direct social costs for 5 per cent and indirect costs for 75 per cent of the total cost. The mean monthly cost is found to be inversely related to SES, a pattern largely driven by indirect costs. The monthly cost for high SES is US$ 1,083 and US$ 1,588 for low SES. A multivariate regression analysis suggests that severity of dementia and caregiver’s burden account for between 49 and 70 per cent of the difference in the indirect cost across SES. However, between one-third and one-half of the variation across SES is not due to gradient in severity of dementia. Direct medical costs increase in higher SES, reflecting differences in purchasing power, while indirect costs are inversely related to SES and more than compensate differences in medical costs. Moreover, in lower SES groups, female caregivers, typically family members who are inactive in the labor market, mostly provide informal care. The average annual cost of dementia in Chile (US$ 17,559) is lower in comparison to high-income countries (US$ 39,595) and the proportion of cost related to informal cost is higher (74 per cent compared to 40 per cent). SES is a key determinant in the cost of dementia. In the absence of universal access to treatment, part of the social cost of dementia potentially preserves or increases income and gender inequality.

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Measuring Care-Related Quality of Life of Caregivers for Use in Economic Evaluations: CarerQol Tariffs for Australia, Germany, Sweden, UK, and US

Background: Informal care is often not included in economic evaluations in healthcare, while the impact of caregiving can be relevant for cost-effectiveness recommendations from a societal perspective. The impact of informal care can be measured and valued with the CarerQol instrument, which measures the impact of informal care on seven important burden dimensions (CarerQol-7D) and values this in terms of general quality of life (CarerQol-VAS). The CarerQol can be included at the effect side of multi-criteria analyses of patient interventions or in cost-effectiveness or utility analysis of interventions targeted at caregivers. Objective: At present, utility scores based on relative utility weights for the CarerQol-7D are only available for the Netherlands. This study calculates CarerQol-7D tariffs for Australia, Germany, Sweden, UK, and US. Methods: Data were collected among the general population in Australia, Germany, Sweden, UK, and US by an Internet survey. Utility weights were collected with a discrete choice experiment with two unlabeled alternatives described in terms of the seven CarerQol-7D dimensions. An efficient experimental design with priors obtained from the Netherlands was used to create the choice sets. Data was analyzed with a panel mixed multinomial logit model with random parameters. Results: In all five countries, the CarerQol-7D dimensions were significantly associated with the utility of informal care situations. Physical health problems were most strongly associated with the utility for informal care situations. The tariff was constructed by adding up the relative utility weights per category of all CarerQol-7D dimensions for each country separately. Conclusion: The CarerQol tariffs for Australia, Germany, Sweden, UK, and US facilitate the inclusion of informal care in economic evaluations.

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Indirect Fiscal Effects of Long‐Term Care Insurance*

Informal care by close family members is the main pillar of most long‐term care systems. However, due to demographic ageing, the need for long‐term care is expected to increase while the informal care potential is expected to decline. From a budgetary perspective, informal care is often viewed as a cost‐saving alternative to subsidised formal care. This view, however, neglects that many family carers are of working age and face the difficulty of reconciling care and paid work, which might entail sizeable indirect fiscal effects related to forgone tax revenues, lower social security contributions and higher transfer payments. In this paper, we use a structural model of labour supply and the choice of care arrangement to quantify these indirect fiscal effects of informal care. Moreover, based on the model, we discuss the fiscal effects related to non‐take‐up of formal care.

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Spillover effect of Japanese long-term care insurance as an employment promotion policy for family caregivers

We evaluate a spillover effect of the Japanese public long-term care insurance (LTCI) as a policy to stimulate family caregivers’ labor force participation. Using nationally representative data from 1995 to 2013, we apply difference-in-difference propensity score matching to investigate the spillover effect in two periods: before and after the introduction of the LTCI in 2000 and before and after its major amendment in 2006. Our results show that the LTCI introduction has significant and positive spillover effects on family caregivers’ labor force participation and the effects vary by gender and age. In contrast, the LTCI amendment is found to have generally negative spillover effects on their labor force participation. We draw attention to these spillover effects, as expanding labor market supply to sustain the economy would be a priority for Japan and other rapidly aging countries in the coming decades.

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Means-tested public support and the interaction between long-term care insurance and informal care

This paper investigates theoretically how the structure of means-tested public long-term care (LTC) support influences the relationship between LTC insurance and informal care. Three types of public support encountered in various means-tested LTC schemes are examined. First, the level to be considered for means-testing only takes into account the level of wealth of the recipient without considering the cost of LTC or the possible insurance benefits. Second, the public support also considers the LTC needs of the recipient. Third, the means-test structure takes into consideration insurance benefits as well. Our results show that the optimal levels of insurance and informal care as well as their relationship are strongly influenced by the ways means-tested public support for LTC is structured, which have important implications in terms of public policy for the financing of LTC needs.

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Costs of formal and informal care in the last year of life for patients in receipt of specialist palliative care

Background: Economic evaluation of palliative care has been slow to develop and the evidence base remains small. Aim: This article estimates formal and informal care costs in the last year of life for a sample of patients who received specialist palliative care in three different areas in Ireland. Design: Formal care costs are calculated for community, specialist palliative care, acute hospital and other services. Where possible, a bottom-up approach is used, multiplying service utilisation by unit cost. Informal care is valued at the replacement cost of care. Setting/participants: Data on utilisation were collected during 215 ‘after death’ telephone interviews with a person centrally involved in the care in the last year of life of decedents who received specialist palliative care in three areas in Ireland with varying levels of specialist palliative care. Results: Mean total formal and informal costs in the last year of life do not vary significantly across the three areas. The components of formal costs, however, do vary across areas, particularly for hospital and specialist palliative care in the last 3 months of life. Conclusion: Costs in the last year of life for patients in receipt of specialist palliative care are considerable. Where inpatient hospice care is available, there are potential savings in hospital costs to offset specialist palliative care inpatient costs. Informal care accounts for a high proportion of costs during the last year of life in each area, underlining the important role of informal caregivers in palliative care.

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The multidimensional burden of informal caregivers in primary malignant brain tumor

Purpose: Informal caregivers (ICs) provide care and improve the quality of life of patients with malignant brain tumor. We analyze the impact of their involvement on themselves from a triple perspective.

Methods: Home-dwelling patients with primary malignant brain tumor underwent a medical examination. ICs burden was evaluated by a self-administered postal questionnaire. Objective burden (Informal Care Time, ICT), subjective burden (Zarit Burden Inventory, ZBI), and financial burden (valuation of lost earnings using the Replacement and Opportunity Cost Methods, RCM, OCM) were evaluated.

Results: ICs (N = 84) were principally women (87 %) and spouses (64 %), of mean age 55 years, who assisted patients of mean age 53 years and with a mean KPS score of 61 (range = 30–90, med = 60). Subjective burden was moderate (mean ZBI = 30). Objective burden was high (mean ICT = 11.7 h/day), mostly consisting of supervision time. Higher subjective and objective burden were associated with poorer functional status (KPS) but not with a higher level of cognitive disorders in multivariate analyses. Other independent associated factors were bladder dysfunction and co-residency for objective burden and working and a poor social network for subjective burden. The 56 working ICs made work arrangements (75 %) that impacted their wages (36 %) and careers (30 %). Financial burden due to uncompensated caregiving hours for Activities of Daily Living had a mean monetary value from Є677(RCM) to Є1683(OCM) per month (i.e., ranging from Є8124 to Є20196 per year).

Conclusions: IC burden is multidimensional. Greater provision of formal care, more IC support programs, and economic interventions targeting IC employment and finances are needed.

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Resource Use and Cost of Alzheimer's Disease in France: 18-Month Results from the GERAS Observational Study

Background: There is little longitudinal data on resource use and costs associated with Alzheimer's disease (AD) in France.; Objectives: To evaluate resource use and societal costs associated with AD in a French cohort of patients and their caregivers and the effect of patient cognitive decline on costs over an 18-month period.; Methods: Community-dwelling patients with mild, moderate, or moderately severe/severe AD dementia (n = 419) were followed-up for 18 months. Total societal costs were estimated by applying 2010 unit costs to resource use, including outpatient visits, hospital days, institutionalization, and caregiver hours. Cognitive function was assessed by Mini-Mental State Examination scores.; Results: Mean cumulative total costs over the 18-month period were €24,140 for patients with mild AD dementia, €34,287 for those with moderate AD dementia, and €44,171 for those with moderately severe/severe AD dementia (P < 0.001; ANOVA comparison between severity groups). The biggest contributor to total societal costs was caregiver informal care (>50% of total costs at all stages of AD dementia). Cognitive decline (≥3-point decrease in Mini-Mental State Examination score or institutionalization) was associated with a 12.5% increase in total costs (P = 0.02). Significant differences were observed across severity groups for caregiver time (P < 0.001); mean monthly caregiver time increased at each time point over the 18 months in each severity group.; Conclusions: Increasing severity of AD dementia in France is associated with increased use of resources as well as increased total societal and patient costs; informal care was the greatest cost contributor. Clinically meaningful cognitive decline is associated with significantly increased costs.

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The cost of diagnosis and early support in patients with cognitive decline

Objective: Recent research indicates considerable heterogeneity in the provision of memory assessment services (MAS). However, little is known on the extent of variation in the costs of the services MAS provide. We investigated the costs of supporting patients with suspected dementia, including assessment and support over the following 6 months.; Methods: Clinic costs were estimated on the basis of an organisational survey reporting staff roll, grade and activities. Costs of primary health and social care were estimated from questionnaire data reported by carers of patients at baseline, 3 and 6 months after referral.; Results: Mean monthly staff costs at MAS were £73 000. Imaging at assessment costs an additional £3500 per month. Monthly clinic cost per new patient assessed varied from £320 to £5400 across clinics. Additional primary health and social care costs of £130-220 a month between baseline and 6 months were reported by carers. Costs of pharmacological and non-pharmacological treatments reported by carers were small. Informal care costs dwarfed health and social care costs when valued at a modest unit cost. The overall mean cost of supporting a patient for 6 months varied from £1600 to £2500 dependent on assumptions regarding the proportion of MAS intervention and review costs accrued at 6 months.; Conclusions: There is considerable variation in the intensity and associated costs of services provided by MAS. Further research should ascertain to what extent such variation is associated with differences in patient outcomes. 

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The personal cost of dementia care in Japan: A comparative analysis of residence types

Objective: We aimed to quantify the personal economic burden of dementia care in Japan according to residence type.; Methods: A cross-sectional online survey was conducted on 3841 caregivers of people with dementia. An opportunity cost approach was used to calculate informal care costs. All costs and the observed/expected (OE) ratio of costs were adjusted using patient sex, age, and care-needs levels, and compared among the residence types.; Results: The mean daily informal care time was 8.2 hours, and the mean monthly informal care costs for community-dwelling people with dementia were US$1559. The OE ratio for informal care costs in community-dwelling patients was higher than in institutionalized patients.; Conclusion: The inclusion of informal care costs reduced the differences in total personal costs among the residence types. The economic burden of informal care should be considered when quantifying dementia care costs.

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Healthcare utilization and costs in primary care patients with dementia: baseline results of the DelpHi-trial

The objectives of this cross-sectional analysis were to determine healthcare resource utilization and cost for community-dwelling patients with dementia (PWD) from a payer's and societal perspective, and to analyze the associations between costs and sociodemographic and clinical variables. Analysis of healthcare costs from a payer's perspective was based on a sample of 425 PWD, analysis of healthcare costs from societal perspective on a subsample of 254 PWD and their informal caregivers. Frequency of healthcare resource utilization was assessed by means of questionnaires. Informal care and productivity losses were assessed by using the Resource Utilization in Dementia questionnaire (RUD). Costs were monetarized using standardized unit costs. To analyze the associations, multiple linear regression models were used. Total annual costs per PWD valued 7016€ from a payer's and 25,877€ from a societal perspective, meaning that societal cost is approximately three and a half times as much as payer's expenditures. Costs valuated 5456 € for medical treatments, 1559 € for formal care, 18,327€ for informal care. Productivity losses valued 1297€ for PWD caregivers. Informal care could vary substantially (-21%; +33%) concerning different valuation methods. Medical care costs decreased significantly with progression of dementia and with age. Costs of care double over the stages of dementia. Formal care costs were significantly higher for PWD living alone and informal care costs significantly lower for PWD with an employed caregiver. For all cost categories, deficits in daily living activities were major cost drivers.

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The use of informal care by people with vision impairment

Purpose: To estimate and characterize the use of informal care by people with vision impairment in Portugal.; Methods: A total of 546 visually impaired individuals were recruited from Portuguese hospitals. Clinical information was obtained from medical records, socio-demographic details and informal care use were collected during face-to-face interviews. In addition, participants responded to a functional vision questionnaire (activity inventory) to assess their visual ability. Logistic regression was used to determine independent factors associated with informal care use and linear regression was used to determine independent predictors of intensity of informal care use.; Results: Informal care was reported by 39.6% of the participants. The probability of reporting informal care was higher in non-married, those with comorbidities, with lower visual ability and worse visual acuity. The median number of caregivers' hours per year was 390 (mean = 470; 95%CI = 488-407), which represent a median opportunity cost of €2,586. Visual ability was the only independent predictor of number of hours of informal care received.; Conclusions: Informal care was frequently used by individuals with impaired vision. Improving visual ability of people with impaired vision when performing valued activities may reduce the burden of visual loss at personal and societal level. This could be achieved with person-centred visual rehabilitation.

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Standardized Questionnaire for the Measurement, Valuation, and Estimation of Costs of Informal Care Based on the Opportunity Cost and Proxy Good Method

Costs of informal care account for a significant component of total societal costs for many chronic and disabling illnesses. Yet, costs associated with the provision of informal care is seldom included in economic evaluations of new health technologies, increasing the risk of suboptimal decisions on the allocation of resources from the perspective of society. Our objective was to propose a standardized questionnaire for the measurement, valuation, and estimation of caregiver indirect (productivity) and informal care costs as separate mutually exclusive subsets of total costs in cost-of-illness studies and as an input to economic evaluations from the societal perspective. We developed a questionnaire for data collection and step-by-step analysis procedures for resource valuation and cost estimation. Data concerning absenteeism from work and time devoted to informal care were recorded using the recall method. Indirect (productivity) and paid informal care costs were valued and estimated according to the human-capital approach as the loss of production. Unpaid informal care costs were valued and estimated as the loss of leisure time quantified using the opportunity cost and proxy good method. The new questionnaire, titled the Caregiver Indirect and Informal Care Cost Assessment Questionnaire, contains 13 questions regarding caregiver current and previous work status, productivity, and the provision of informal care (stratified by time devoted to household activities, personal care, practical support, and emotional support). The proposed questionnaire should be helpful to inform the design, implementation, and execution of future cost-of-illness studies and economic evaluations from the perspective of society.

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Relationship between physician-based assessment of disease activity, quality of life, and costs of ulcerative colitis in Poland

Introduction: Ulcerative colitis (UC) is an idiopathic inflammatory bowel disorder, which requires lifelong treatment. It generates substantial direct and indirect costs, and significantly affects the quality of life, especially in the active state of the disease.; Aim: To evaluate the direct and indirect costs of UC as well as to assess disease activity and quality of life reported by patients with UC in Polish settings.; Material and methods: A questionnaire, cross-sectional study among UC patients as well as physicians involved in the therapy of the patients was conducted. The Clinical Activity Index (CAI) was used to assess disease activity, and the WPAI questionnaire to assess productivity loss. The quality of life was presented as utility calculated using the EQ-5D-3L questionnaire. Indirect costs included absenteeism, presenteeism, and informal care were assessed with the Human Capital Approach and expressed in euros (€). The productivity loss among informal caregivers was valuated with the average wage in Poland. Correlations were presented using the Spearman's coefficient, and the between-group difference was assessed with Mann-Whitney U-test.; Results: One hundred and forty-seven patients participated in the study, including 95 working persons. Mean cost of absenteeism and presenteeism was €1615.2 (95% CI: 669.5-2561.0) and €3684.4 (95% CI: 2367.8-5001.1), respectively, per year per patient with a disease in remission. The mean yearly cost of productivity loss due to informal care was estimated to be €256.6 (range: 0.0-532.6). The corresponding values for patients with active disease were: €8,913.3 (95% CI: 6223.3-11,603.3), €4325.1 (95% CI: 2282.4-6367.8), and €2396.1 (95% CI: 402.0-4390.3). The between-group difference in total indirect costs, cost of absenteeism, and cost of informal care was statistically significant (p < 0.05). The average weighted monthly costs of therapy with particular drugs categories (e.g. mesalazine or biologic drugs) differed significantly between active disease or remission patients. The difference in utility values between patients with a disease in remission (0.898 ±0.126) and patients with an active disease (0.646 ±0.302) was statistically significant.; Conclusions: Our study revealed the social burden of UC and high dependency of direct and indirect costs as well as quality of life on the severity of UC in Poland. The statistically significant differences were identified in total direct and indirect cost, cost of absenteeism, cost of informal care, and health-related quality of life among patients with an active disease compared to patients with a disease in remission.

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Quality of Life, Care Resource Use, and Costs of Dementia in 8 European Countries in a Cross-Sectional Cohort of the Actifcare Study

Background: With 10.5 million people with dementia in Europe and $301 billion associated costs, governments face challenges organizing access to care.; Objective: To examine the costs related to formal and informal care use and quality of life for people with dementia in eight European countries, and explore the association with unmet needs.; Methods: Cross-sectional data from 451 persons with dementia and their informal caregivers of the Actifcare cohort study were obtained. Formal and informal care use was multiplied by country specific unit prices of services. Needs were measured using the CANE and health-related quality of life (HRQOL) of the person with dementia (both self- and proxy-rated) and informal caregiver's quality of life using EQ-5D-5L, ICECAP-O, DEMQOL-U, and CarerQol utility scores. The association between costs and country, European region, and unmet needs was assessed using multi-level linear regression.; Results: Self-rated EQ-5D-5L utility score was higher than proxy-rated (0.84 and 0.71, respectively). Informal caregivers' utility score was 0.84. Across eight countries annual mean costs of formal and informal care were approximately € 17,000. Unmet needs were not associated with annual costs of care, nor with proxy-rated HRQOL, but were associated with self-rated HRQOL.; Conclusion: We found varying relationships between unmet needs and quality of life, and no association between unmet needs and care costs, although the results were sensitive to various factors. Future research should further investigate the relation between unmet needs, quality of life and costs to generate a better understanding of the effects of (un)timely access to care.

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The indirect costs of palliative care in end-stage cancer: A real-life longitudinal register- and questionnaire-based study

Background: Palliative care needs are increasing as more people are dying from incurable diseases. Healthcare costs have been reported to be highest during the last year of life, but studies on the actual costs of palliative care are scarce.; Aim: To explore the resource use and costs of palliative care among end-stage breast, colorectal and prostate cancer patients after termination of life-prolonging oncological treatments, that is, during the palliative care period.; Design: A real-life longitudinal register- and questionnaire-based study of cancer patients' resource use and costs.; Participants: In total, 70 patients in palliative care with no ongoing oncological treatments were recruited from the Helsinki University Hospital or from the local hospice. Healthcare costs, productivity costs and informal care costs were included.; Results: The mean duration of the palliative care period was 179 days. The healthcare cost accounted for 55%, informal care for 27% and productivity costs for 18% of the total costs. The last 2 weeks of life contributed to 37% of the healthcare cost. The costs of the palliative care period were higher in patients living alone, which was mostly caused by inpatient care ( p = 0.018).; Conclusion: The 45% share of indirect costs is substantial in end-of-life care. The healthcare costs increase towards death, which is especially true of patients living alone. This highlights the significant role of caregivers. More attention should be paid to home care and caregiver support to reduce inpatient care needs and control the costs of end-of-life care.

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Costs and Burden Associated With Loss of Labor Productivity in Informal Caregivers of People With Dementia: Results From Spain

Aims: We analyzed indirect costs related to loss of labor productivity (LLP) in informal caregivers (ICs) of people with dementia (PwD) and the associated caregiver burden and patients' clinical variables.; Methods: Multicenter cohort study of PwD and their ICs (n = 287) focused on two groups: (1) home care and (2) institutional long-term care. The costs of LLP were assessed using the Resource Utilization Dementia instrument and a human capital approach.; Results: The cost for LLP was 378&OV0556;/month or 4.536&OV0556;/year. Greater disease severity increased the likelihood of reducing working hours and missing a working day. There was a significant association between partial absenteeism and burden in employed informal caregiver in both the home and institutional setting.; Conclusion: Cognitive impairment contributes to the cost of LLP in IC especially in home-care. LLP has a negative impact on IC burden.

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Costs of Care of Agitation Associated With Dementia in 8 European Countries: Results From the RightTimePlaceCare Study

Objective: To estimate the additional societal costs for people living with dementia (PwD) with agitation in home care (HC) and institutional long-term care (ILTC) settings in 8 European countries.; Design: Cross-sectional data from the RightTimePlaceCare cohort.; Setting: HC and ILTC settings from 8 European countries (Estonia, Finland, France, Germany, Netherlands, Spain, Sweden, and England).; Participants: A total of 1997 PwD (1217 in HC group and 780 lived in an ILTC) and their caregivers.; Main Outcome Measures: Medical care, community care, and informal care were recorded using the Resource Utilization in Dementia (RUD) questionnaire. Agitation was assessed based on the agitation symptoms cluster defined by the presence of agitation and/or irritability and/or disinhibition and/or aberrant motor behavior items of the Neuropsychiatric Inventory Questionnaire (NPI-Q).; Results: Total monthly mean cost differences due to agitation were 445€ in the HC setting and 561€ in the ILTC setting (P = .01 and .02, respectively). Informal care costs were the main driver in the HC group (73% of total costs) and institutional care costs were the main driver in the ILTC group (53% of total costs). After adjustments, the log link generalized linear mixed model showed an association between agitation symptoms and an increase of informal care costs by 17% per month in HC setting (P < .05).; Conclusion: This study found that agitation symptoms have a substantial impact on informal care costs in the community care setting. Future research is needed to evaluate which strategies may be efficient by improving the cost-effectiveness ratio and reducing the burden associated with informal care in the management of agitation in PwD.

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Costs of Care of Agitation Associated With Dementia in 8 European Countries: Results From the RightTimePlaceCare Study

Objective: To estimate the additional societal costs for people living with dementia (PwD) with agitation in home care (HC) and institutional long-term care (ILTC) settings in 8 European countries.; Design: Cross-sectional data from the RightTimePlaceCare cohort.; Setting: HC and ILTC settings from 8 European countries (Estonia, Finland, France, Germany, Netherlands, Spain, Sweden, and England).; Participants: A total of 1997 PwD (1217 in HC group and 780 lived in an ILTC) and their caregivers.; Main Outcome Measures: Medical care, community care, and informal care were recorded using the Resource Utilization in Dementia (RUD) questionnaire. Agitation was assessed based on the agitation symptoms cluster defined by the presence of agitation and/or irritability and/or disinhibition and/or aberrant motor behavior items of the Neuropsychiatric Inventory Questionnaire (NPI-Q).; Results: Total monthly mean cost differences due to agitation were 445€ in the HC setting and 561€ in the ILTC setting (P = .01 and .02, respectively). Informal care costs were the main driver in the HC group (73% of total costs) and institutional care costs were the main driver in the ILTC group (53% of total costs). After adjustments, the log link generalized linear mixed model showed an association between agitation symptoms and an increase of informal care costs by 17% per month in HC setting (P < .05).; Conclusion: This study found that agitation symptoms have a substantial impact on informal care costs in the community care setting. Future research is needed to evaluate which strategies may be efficient by improving the cost-effectiveness ratio and reducing the burden associated with informal care in the management of agitation in PwD.

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Costs and Resource Use Associated with Alzheimer's Disease in Italy: Results from an Observational Study

Background: The GERAS II study aimed to assess societal costs and resource use associated with Alzheimer's disease (AD) for patients and their primary caregivers in Italy and Spain, stratified for different severity stages of AD at baseline. This report presents baseline results for Italy.; Design: GERAS II was a prospective, multicentre, observational study of routine care in AD.; Setting: Community-dwelling patients attending specialist secondary care centres (memory clinics/Alzheimer's Evaluation Units) and their primary informal caregivers were recruited into the study.; Participants: Patients were aged ≥55 years, presented within the normal course of care, had a diagnosis of probable AD and a Mini-Mental State Examination (MMSE) score of ≤26. Patients and caregivers were stratified according to patient AD dementia severity at baseline: mild, MMSE score 21-26; moderate, MMSE score 15-20; or moderately severe/severe, MMSE score <15.; Measurements: Data collected for patients and caregivers included demographics/clinical characteristics; current medication; patient cognitive, functional and behavioural assessments; patient and caregiver health-related quality of life (HRQoL); and patient and caregiver resource use. The costs associated with the resources used were calculated. Costs were broken down into patient healthcare costs, patient social care costs and caregiver informal care costs.; Results: Of 198 patients enrolled from Italy, 29 (15%) had mild AD dementia, 80 (40%) had moderate AD dementia, and 89 (45%) had moderately severe/severe AD dementia. Patient and caregiver characteristics showed some differences between AD dementia severity groups; for example, a numerically higher proportion of patients with mild and moderately severe/severe AD dementia were taking memantine compared with those with moderate AD dementia. Patient functioning and behavioural and psychological symptoms worsened with increasing AD dementia severity (p<0.05 between groups for all measures). No significant difference between the disease severity groups was observed in patient HRQoL, and there was no clear pattern in resource use. However, all measures of caregiver time spent helping the patient differed significantly between groups (p<0.05) and were highest in patients with moderately severe/severe AD dementia. Mean (standard deviation) total monthly societal costs per patient (2013 values) were €1850 (1901), €1552 (1322) and €2728 (2184) for patients with mild, moderate and moderately severe/severe AD dementia, respectively (p<0.001 between groups). Caregiver informal care costs were the greatest contributor to total societal costs and amounted to €1370, €1223 and €2223 per patient per month for mild, moderate and moderately severe/severe AD dementia groups, respectively (p<0.001 between groups).; Conclusion: Total Italian societal costs generally increased with increasing AD dementia severity. However, costs were slightly lower for moderate than for mild AD dementia, possibly reflecting the observed unusual trend of greater caregiver time and higher memantine use in patients with mild versus moderate AD dementia.

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Informal caregivers of people with an intellectual disability in England: health, quality of life and impact of caring

There is wide variation in reported impact of caring on caregiver well-being, and often a negative appraisal of caregiving. Researchers are beginning to question the robustness of the evidence base on which negative appraisals are based. The present study aimed to draw on data from a population-representative sample to describe the health, quality of life and impact of caring of informal caregivers of people with an intellectual disability. Informal carers of people with intellectual disability ( N = 260) were identified among 2199 carers in the English Survey of Carers in Households 2009/10. Generalised estimating equations explored the association between socio-demographic and caring profile with quality of life, physical health status, and impact on psychological health and personal life. Compared to other caregivers, providing care to a person with intellectual disability was not associated with reduced quality of life. There was an 82% increased risk of reporting poorer health status, even though poorer health was not likely to be attributed to care-giving. A higher risk of negative impact on personal life was seen in comparison with the wider group of caregivers, but not in comparison with more similar-sized caregiver groups (mental health or dementia). Carers of people with intellectual disability were more likely to be struggling financially and have a high caring load. These factors were systematically related to lower well-being. A uniformly negative appraisal of caring for people with intellectual disability was not supported by these English population-representative data. Poverty and long care-giving hours may make caregivers more susceptible to negative well-being. Support for caregivers of people with intellectual disability should focus on alleviating those two factors.

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Caregiver Integration During Discharge Planning for Older Adults to Reduce Resource Use: A Metaanalysis

Objectives: To determine the effect of integrating informal caregivers into discharge planning on postdischarge cost and resource use in older adults.; Design: A systematic review and metaanalysis of randomized controlled trials that examine the effect of discharge planning with caregiver integration begun before discharge on healthcare cost and resource use outcomes. MEDLINE, EMBASE, and the Cochrane Library databases were searched for all English-language articles published between 1990 and April 2016.; Setting: Hospital or skilled nursing facility.; Participants: Older adults with informal caregivers discharged to a community setting.; Measurements: Readmission rates, length of and time to post-discharge rehospitalizations, costs of postdischarge care.; Results: Of 10,715 abstracts identified, 15 studies met the inclusion criteria. Eleven studies provided sufficient detail to calculate readmission rates for treatment and control participants. Discharge planning interventions with caregiver integration were associated with a 25% fewer readmissions at 90 days (relative risk (RR) = 0.75, 95% confidence interval (CI) = 0.62-0.91) and 24% fewer readmissions at 180 days (RR = 0.76, 95% CI = 0.64-0.90). The majority of studies reported statistically significant shorter time to readmission, shorter rehospitalization, and lower costs of postdischarge care among discharge planning interventions with caregiver integration.; Conclusion: For older adults discharged to a community setting, the integration of caregivers into the discharge planning process reduces the risk of hospital readmission.

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Costs and quality of life in community-dwelling patients with Alzheimer's disease in Spain: results from the GERAS II observational study

Background: Country-specific data on resource use and costs associated with Alzheimer's disease (AD) help inform governments about the increasing need for medical and financial support as the disease increases in prevalence.; Methods: GERAS II, a prospective observational study, assessed resource use, costs, and health-related quality of life (HRQoL) among patients with AD and their caregivers in Spain. Community-dwelling patients aged ≥55 years with probable AD, and their primary caregivers, were recruited by study investigators during routine clinical practice and assessed as having mild, moderate, or moderately severe/severe (MS/S) AD dementia based on patient Mini-Mental State Examination scores. Costs of AD were calculated by applying costs to resource-use data obtained in caregiver interviews using the Resource Utilization in Dementia instrument. Total societal costs included patients' health and social care costs and caregiver informal care costs. Baseline results are presented.; Results: Total mean monthly societal costs/patient (2013 values) were €1514 for mild (n = 116), €2082 for moderate (n = 118), and €2818 for MS/S AD dementia (n = 146) (p value <0.001 between groups). Caregiver informal care costs comprised most of the total societal costs and differed significantly between groups (€1050, €1239, €1580, respectively; p value = 0.013), whereas patient healthcare costs did not. Across AD dementia severity groups, patient HRQoL (measured by proxy) decreased significantly (p value <0.001), caregiver subjective burden significantly increased (p value <0.001) and caregiver HRQoL was similar.; Conclusions: Societal costs associated with AD in Spain were largely attributable to caregiver informal care costs and increased with increasing AD dementia severity.

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Costs of dementia in the Czech Republic

Objective: The aim of this study was to estimate the cost of dementia in the Czech Republic.; Methods: One hundred and nineteen patient-caregiver dyads participated in our multicenter observational cost-of-illness study. The modified Resource Utilization in Dementia Questionnaire was used as the main tool to collect data from patients and caregivers. Medical specialists provided additional data from medical records. The average costs of dementia were calculated and patients were then divided by the level of cognitive impairment. A generalized linear model was used to determine if differences were present for selected cost variables.; Results: The mean (standard deviation) for direct cost per a patient in a month was estimated to be €243.0 (138.0), €1727.1 (1075.6) for the indirect cost, and €1970.0 (1090.3) for the total cost of dementia in the Czech Republic. All of the costs increased as dementia severity increased. Both the indirect and total costs significantly (p < 0.05) increased if patients were living with their primary caregiver, and if the severity of cognitive impairment was increased.; Conclusions: The indirect cost, which was represented mainly by informal care, comprised the main part of the total cost of care for patients with dementia in the Czech Republic. Both total and indirect care costs increased significantly the cognition declined.

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Making Implicit Assumptions Explicit in the Costing of Informal Care: The Case of Head and Neck Cancer in Ireland

Background: From a health service perspective, informal care is often viewed as a potentially cost-effective way of transferring costs out of the formal healthcare sector. However, informal care is not a free resource.; Objective: Our objective was to assess the impact of alternative valuation methods and key assumptions on the cost of informal care.; Methods: Informal carers who assisted in the care of a head and neck cancer survivor for at least 1 year were sent a postal questionnaire during January-June 2014 requesting information on time spent on caring tasks in the month prior to the survey. Time was costed using the opportunity cost approach (OCA; base-case) and the generalist (GRCA) and specialist (SRCA) replacement cost approaches. The impact on results of how household work and informal carers not in paid employment are treated were investigated.; Results: We estimated a cost of €20,613 annually in the base case (OCA - mean wage) for informal care. The GRCA and SRCA equivalent costs were 36% (€13,196) and 31% (€14,196) lower, respectively. In the extreme scenario of applying a 'zero' opportunity cost to carers not in paid employment, costs fell by 67% below the base case.; Conclusion: While the choice of costing method is important for monetary valuation, the sociodemographic and economic characteristics of the underlying population can be equally so. This is especially important given the heterogeneous treatment of older carers, female carers and carers not in paid employment in the OCA. To limit this, we would suggest using the SRCA to value informal care across heterogeneous carer populations.

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Will you still need me, will you still feed me when I'm 64? The health impact of caregiving to one's spouse

Informal care may substitute for formal long-term care that is often publicly funded or subsidized. The costs of informal caregiving are borne by the caregiver and may consist of worse health outcomes and, if the caregiver has not retired, worse labor market outcomes. We estimate the impact of providing informal care to one's partner on the caregiver's health using data from the Survey of Health, Ageing, and Retirement in Europe. We use statistical matching to deal with selection bias and endogeneity. We find that in the short run caregiving has a substantial effect on the health of caregivers and, for female caregivers, on their health care use. These effects should be taken into account when comparing the costs and benefits of formal and informal care provision. The health effects may, however, be short-lived, as we do not find any evidence that they persist after 4 or 7 years.;

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Caring for Individuals with Chronic Illness and Minor Depression: Latino Perceptions of Caregiver Burden

Informal caregiving can be fundamental to disease management. Yet, the psychosocial, physical, and financial burden experienced by caregivers can be significant. In the US, Latinos experience increasing rates of chronic conditions, the highest uninsured rates in the country, and a growing dependence on informal caregivers. This article explores the impact of caregiving on caregivers of individuals with comorbid chronic disease and depression. Findings highlight the impact of caregiving on financial insecurity, balancing competing demands, increased emotional distress, and community supports. Findings support the inclusion of caregivers in disease management programs to enhance psychosocial outcomes for both caregivers and their patients.

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Attitudes toward early palliative care in cancer patients and caregivers: a Korean nationwide survey

Integrated early palliative care (EPC) improves quality of life and reduces psychological distress in adult patients with cancer and caregivers, but attitudes toward EPC have been poorly studied. We aimed to investigate attitudes toward EPC in a nationwide survey of patients with cancer and caregivers. From July to October 2016, we administered nationwide questionnaires examining attitudes toward EPC in patients with cancer (<italic>n</italic> = 1001) and their families (<italic>n</italic> = 1006) from 12 Korean hospitals. When an individual considered EPC unnecessary, the reasons were collected and analyzed. Factors associated with perception of EPC were examined. A majority of patients (84.5%) and caregivers (89.5%) had positive attitudes toward EPC. The most common reasons for deeming EPC unnecessary were that EPC may be an obstacle to cancer treatment (patients: 37%; caregivers: 23%; respectively) or that they were not sure if EPC is beneficial (patients: 21%; caregivers: 24%; respectively). Financial burden as a reason was more evident in caregivers (23%) than in patients (17%). Male gender, age <50, early stage, intensive care unit admission, and not believing that dying people should prepare to practice charity were associated with patients’ negative attitudes. In caregivers, opposition to EPC was associated with not thinking death should be feared, not thinking people should be remembered, and lower educational level. Our findings showed that significant numbers of patients with advanced cancer and family caregivers showed positive attitudes toward EPC. However, more than 10% of participants did not consider EPC necessary. Physicians’ communication with patients and caregivers and financial support could help overcome the barriers of EPC.

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Economic burden of family caregiving for elderly population in southern Ghana: the case of a peri-urban district

Background: Health systems in low and lower-middle income countries, particularly in sub-Sahara Africa, often lack the specialized personnel and infrastructure to provide comprehensive care for elderly/ageing populations. Close- to-client community-based approaches are a low-cost way of providing basic care and social support for elderly populations in such resource-constrained settings and family caregivers play a crucial role in that regard. However, family caregiving duties are often unremunerated and their care-related economic burden is often overlooked though this knowledge is important in designing or scaling up effective interventions. The objective of this study, therefore, was to estimate the economic burden of family caregiving for the elderly in southern Ghana. Methods: The study was a retrospective cross-sectional cost-of-care study conducted in 2015 among family caregivers for elderly registered for a support group in a peri-urban district in southern Ghana. A simple random sample of 98 respondents representative of the support group members completed an interviewer-administered questionnaire. Costs were assessed over a 1-month period. Direct costs of caregiving (including out-of-pocket costs incurred on health care) as well as productivity losses (i.e. indirect cost) to caregivers were analysed. Intangible costs were assessed using the 12-item Zarit burden interview (ZBI) tool and the financial cost dimension of the cost of care index. Results: The estimated average cost of caregiving per month was US$186.18, 66% of which was direct cost. About 78% of the family caregivers in the study reported a high level of caregiving burden (as measured with the ZBI) with females reporting a relatively higher level than males. Further, about 87% of the family caregivers reported a high level of financial stress as a result of caregiving for their elderly relative. Conclusion: The study shows that support/caregiving for elderly populations imposes economic burden on families, potentially influencing the economic position of families with attendant implications for equity and future family support for such vulnerable populations. 

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Financial hardship after traumatic brain injury: a brief scale for family caregivers

Objective: Financial hardship is frequently posited as a significant factor influencing family health and adjustment after brain injury, though traditional methods of measurement have shown limited usefulness. The purpose of this study was to adapt and test the utility of a brief scale of financial hardship (BSFH-BI) for use with family caregivers after TBI. Methods: The researchers constructed the BSFH-BI using financial well-being items adapted from three survey instruments. The BSFH-BI questionnaire was completed by 136 family caregivers of individuals with TBIs. Scale utility was evaluated through reliability analysis, factor analysis, and correlations with a measure of life satisfaction. Results: The factor analysis revealed that the BSFH-BI had a meaningful two factor structure consisting of items related to (a) meeting essential living expenses and (b) financial changes after the injury. The scale showed high internal consistency (α = 0.92) and moderate negative correlations with life satisfaction (rs = −0.58). Conclusions: The preliminary findings indicate that the BSFH-BI can be a reliable and valid scale for use with family caregivers after TBI. The authors recommend further study of financial hardship within models of adaptation to TBI using psychometrically validated instruments such as the BSFH-BI. 

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Strain on unpaid carers putting adult social care at increased risk of collapse

The strain on millions of unpaid carers is harming their health, jeopardising the care of loved ones they care for, and putting the adult social care system at an increased risk of collapse, council and care leaders are warning.

Contains link to case studies.

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Economic cost and quality of life of family caregivers of schizophrenic patients attending psychiatric hospitals in Ghana

Background: Low and middle income countries face many challenges in meeting their populations' mental health care needs. Though family caregiving is crucial to the management of severe mental health disabilities, such as schizophrenia, the economic costs borne by family caregivers often go unnoticed. In this study, we estimated the household economic costs of schizophrenia and quality of life of family caregivers in Ghana.; Methods: We used a cost of illness analysis approach. Quality of life (QoL) was assessed using the abridged WHO Quality of Life (WHOQOL-BREF) tool. Cross-sectional data were collected from 442 caregivers of patients diagnosed with schizophrenia at least six months prior to the study and who received consultation in any of the three psychiatric hospitals in Ghana. Economic costs were categorized as direct costs (including medical and non-medical costs of seeking care), indirect costs (productivity losses to caregivers) and intangible costs (non-monetary costs such as stigma and pain). Direct costs included costs of medical supplies, consultations, and travel. Indirect costs were estimated as value of productive time lost (in hours) to primary caregivers. Intangible costs were assessed using the Zarit Burden Interview (ZBI). We employed multiple regression models to assess the covariates of costs, caregiver burden, and QoL.; Results: Total monthly cost to caregivers was US$ 273.28, on average. Key drivers of direct costs were medications (50%) and transportation (27%). Direct costs per caregiver represented 31% of the reported monthly earnings. Mean caregiver burden (measured by the ZBI) was 16.95 on a scale of 0-48, with 49% of caregivers reporting high burden. Mean QoL of caregivers was 28.2 (range: 19.6-34.8) out of 100. Better educated caregivers reported lower indirect costs and better QoL. Caregivers with higher severity of depression, anxiety and stress reported higher caregiver burden and lower QoL. Males reported better QoL.; Conclusions: These findings highlight the high household burden of caregiving for people living with schizophrenia in low income settings. Results underscore the need for policies and programs to support caregivers.

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A journey without maps—Understanding the costs of caring for dependent older people in Nigeria, China, Mexico and Peru

Purpose of the study: Populations in Latin America, Asia and sub-Saharan Africa are rapidly ageing. The extent to which traditional systems of family support and security can manage the care of increased numbers of older people with chronic health problems is unclear. Our aim was to explore the social and economic effects of caring for an older dependent person, including insight into pathways to economic vulnerability. Design & methods: We carried out a series of household case studies across urban and rural sites in Peru, Mexico, China and Nigeria (n = 24), as part of a cross-sectional study, nested within the 10/66 Dementia Research Group cohort. Case studies consisted of in-depth narrative style interviews (n = 60) with multiple family members, including the older dependent person. Results: Governments were largely uninvolved in the care and support of older dependent people, leaving families to negotiate a ‘journey without maps’. Women were de facto caregivers but the traditional role of female relative as caregiver was beginning to be contested. Household composition was flexible and responsive to changing needs of multiple generations but family finances were stretched. Implications: Governments are lagging behind sociodemographic and social change. There is an urgent need for policy frameworks to support and supplement inputs from families. These should include community-based and residential care services, disability benefits and carers allowances. Further enhancement of health insurance schemes and scale-up of social pensions are an important component of bolstering the security of dependent older people and supporting their continued social and economic participation. 

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State of Caring 2018

A total of 7,397 carers and former carers responded to Carers UK’s annual State of Caring survey between March and May 2018. 

Only responses from the 6,828 people currently providing care who completed the survey are included in this report as it is designed to provide a snapshot of caring in 2018. However, Carers UK will be using the responses of former carers in other pieces of work throughout the year. 

Compared to the carer population as a whole, respondents to this survey were more likely to be female and caring for a high number of hours every week. 

Of respondents to the State of Caring Survey 2018 who are currently caring:

  • 75% live in England, 8% live in Northern Ireland, 9% live in Scotland, and 8% live in Wales.
  • 78% identify as female and 20% identify as male.
  • 24% consider themselves to have a disability.
  • 1% are aged 0-24, 4% are aged 25-34, 12% are aged 35-44, 30% are aged 45-54, 33% are aged 55-64, 15% are aged 65-74 and 5% are aged 75 and over. As fewer 1% of carers currently providing care who are under 18 took part in the survey, we have not explored results specifically for this group in the report. 
  • 3% are lesbian, gay or bisexual.
  • 12% also have childcare responsibilities for a non-disabled child under 18.
  • 38% are in paid work (49% full-time and 51% part-time).
  • 33% have been caring 15 years or more, 15% for between 10-14 years, 24% for 5-9 years, 25% for 1-4 years and just 3% have been caring for less than one year. 
  • 47% care for 90 or more hours every week, while 16% care for 50-89 hours, 24% for 20-49 hours and 5% care for 1-19 hours a week.
  • Most (75%) care for one person, 19% care for two people, 4% for three people and 2% care for four or more people.
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Costs and consequences for the carers of people with dementia in Ireland

This study examines the economic and psychological costs of care for family carers of people with dementia in Ireland. The analysis is based on an opportunistic survey of 98 carers of people with dementia. The article presents new findings on Irish carers' own perceptions of optimal care provision and the value of the care provided in monetary terms. Family carers in the survey provide an average of just under 12 hours of specified care each day to people with dementia. Many carers refer to the constant nature of care, with very high figures recorded for surveillance and supervision of the person with dementia. Irish caregivers spend considerably longer than they would wish caring for their relatives with dementia, allowing their mental health to suffer in the process. Carers would also like to be paid for the work that they do. Current arrangements for monetary compensation are, however, selective and therefore inadequate to meet the needs of most carers.

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Carer preferences in economic evaluation and healthcare decision making

The preferences of informal carers are important to capture for healthcare decision making. This paper discusses how these preferences relate to the economic evaluation of health and care interventions. Three main issues are highlighted. First, there is a need to consider carer impact routinely in economic evaluations. Second, more debate is required around the ethical issues stemming from the inclusion of interdependent preferences in healthcare decision making. Third, there are a number of situations where carer and patient preferences may conflict and practical ways of representing and handling these conflicts would be useful.

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Informal care: the views of people receiving care

Informal care is perceived to be the best option for people who require assistance to look after themselves. National and international studies of informal care have focused on the carer, not on the care provided, or the needs and experiences of the care recipients. In the present study, 55 people receiving informal care (21 males and 24 females, mean age = 67.6) were surveyed to determine the type of assistance that they receive, perceptions of the quality of their care, feelings about being looked after by a carer and their perceptions of the services which would be useful. A random sample of 531 households were selected as part of a larger study into informal care in the west of Ireland. A total of 98 carers were identified and 55 of the people they looked after were well enough to participate in the study. Over two-thirds of carers assisted with household chores (e.g. cleaning, preparing meals and shopping). Other activities which carers assisted with included keeping the person safe from household accidents (62%), personal care (42%), and dressing and undressing (31%). Whilst most were very satisfied with the quality of care, a minority reported dissatisfaction, and stated that their carer showed signs of anger and frustration. Common concerns related to the health of the carer, their safety when the carer is not available and the cost of being cared for. Financial support for the person receiving care and the carer were the main priorities for these individuals. The present study points to a need for greater involvement of care recipients in planning services relating to informal care, and support and access to health professionals for people receiving care. People receiving care are also concerned about the level of financial support for themselves and their carers.

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The cost of unpaid caring

Caring takes time and, as we know, time costs. With an ageing population that is living longer, there is less time and less money to be allocated to older people. This article looks at the role and contribution of informal carers to the social care system, and says that more should be done to recognise their skills and knowledge, and better support should be given to help prevent their ill-health, thus helping to reduce the rising cost of formal care to local social services. 

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Valuing carers: calculating the value of unpaid care

This report updates the estimate of the value of unpaid care published by Carers UK in 2002 in ‘Without Us…? Calculating the value of carers’ support’. Based on data available for the first time at local as well as at national level, and on comprehensive information about the time carers devote to supporting those who need their help, the report reveals just how crucial carers are to the health and social care system and to the UK’s economy. 

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Global action against dementia: G8 Dementia Summit communique

The G8 Health Ministers met at the G8 Dementia Summit in London on 11 December 2013 to discuss how to shape an effective international response to dementia. They note the socio-economic impact of dementia globally, and that costs are expected to increase significantly if therapies to prevent dementia and improve care and treatment are not developed and implemented. This communique concerns issues relating to research and innovation; leadership, cross-sector partnerships and knowledge translation; supporting people affected by dementia and their carers; and reducing stigma and fear. The communique is signed by the G8 Health and Science Ministers (from the UK, Canada, France, Germany, Italy, Japan, Russia and the United States). They conclude that they will continue their efforts to work together in line with the commitments in the Declaration and Communiqué, but recognise that dementia is an issue which affects people in countries throughout the world. Consequently, they encourage  all countries and multilateral organisations to come together and take action to reduce the risk to health and to economic development which dementia currently presents. 

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Services, but at a price

The Carers and Disabled Children’s Act 2000 promises carers flexibility. But flexibility comes at a cost - local authorities will be charging for carers’ services, writes Gideon Burrows.

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Contracting one's family members: the Dutch care allowance

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 [...]

Enhancing the experience of carers in the chemotherapy outpatient setting: an exploratory randomised controlled trial to test impact, acceptability and feasibility of a complex intervention co-designed by carers and staff

Purpose: Supporting someone through chemotherapy can be emotionally and physically demanding. However, research has yet to establish the type of support carers require or the best way to provide this. This study tested the feasibility and acceptability of a complex intervention for carers that was co-designed by staff and carers of patients starting chemotherapy.

Methods: Forty-seven carers were recruited, randomised between the intervention (n = 24) and control (n = 23) groups. A questionnaire was completed pre- and post-intervention measuring knowledge of chemotherapy and its side effects, experience of care, satisfaction with outpatient services, coping and emotional wellbeing. The intervention process was evaluated by carers and healthcare professionals (HCPs) in focus groups.

Results: Recruitment to the study was unproblematic and attrition from it was low, suggesting the intervention and study processes were acceptable to patients and carers. Carers in receipt of the ‘Take Care’ intervention reported statistically significantly better understanding of symptoms and side effects and their information needs being more frequently met than carers in the control. Confidence in coping improved between baseline and follow-up for the intervention group and declined for the control although differences were insufficient to achieve statistical significance. There was no significant difference between the two groups’ emotional wellbeing. HCP and carer focus groups confirmed the feasibility and acceptability of the intervention.

Conclusions: The ‘Take Care’ intervention proved acceptable to carers and HCPs and demonstrates considerable promise and utility in practice. Study findings support the conduct of a fully powered RCT to determine the intervention’s effectiveness and cost-effectiveness.

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Social care: third report of session 2009-10: volume 2: oral and written evidence

The social care system is widely seen as failing and it has long been clear that fundamental and lasting reform is necessary.  Reform is made all the more urgent as an ageing population will mean rising demand for care and support. Projected changes in demographics, availability of support from carers, unit costs of care and other factors indicate that social care in its current form will struggle to meet people's needs. Longer life need not mean more time spent in ill health. Improving public health and developing interventions for long-term conditions could pay major dividends. The old-age "support ratio" (the relative numbers of working-age and older people) is not the most important factor in the likely future affordability of social care. Our society must not underestimate its ability to become more productive and wealthier, nor the contribution that older people will make to that. In this report the Health Committee looks at: the present social care system; meeting future demand and costs; shortcomings of the present social care system;  Plans for reform; Achieving lasting reform; and  The way forward.

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Palliative care: fourth report of session 2003-04; volume 1; report together with formal minutes

Currently, around 56% of people die in hospital, 20% at home, 20% in nursing or residential homes and 4% in hospices. Yet surveys suggest that the majority of people would prefer to be supported to die in their own homes. We note the recent economic analysis which Marie Curie has produced of the potential cost benefits arising from a shift towards more patients dying at home and recommend that the Department assesses this carefully. We welcome the fact that the Government is considering legislation to grant extra rights to carers and recommend that it provides for a period of paid leave for them. We recommend that the Department reviews the place of domestic support within the spectrum of social care services and ensures that people’s needs for domestic help are adequately met. We were concerned to note the variation in the criteria for continuing healthcare between Strategic Health Authorities and recommend that national criteria for continuing care should be developed. Many of our witnesses drew our attention to disputes between health services and those providing personal social care for the terminally ill. Unseemly arguments about who should pay for different elements of a care package are especially abhorrent in palliative care, and we call for an integrated structure in the delivery of care. We also seek the inclusion of hospices or specialist care units in the ambit of the Community Care (Delayed Discharges etc.) Act to ensure that higher priority is not attached to other patients in dealing with delayed discharges. 

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Using cost-effectiveness analysis to compare Hospital at Home and in-patient interventions, part 1

 An economic analysis was conducted as an integral part of a comparison of the effectiveness and suitability of Hospital at Home (HaH) and in-patient interventions. The sample comprised of 109 adult primary total joint replacement patients and 21 of their coresident informal carers.

• The paper is presented in two parts. Part 1 includes the background and rationale for the study and the findings from the comparison of the effectiveness of the two interventions using multiple data collection sources.

• Data were collected using questionnaires, audit and semi-structured interviews.

• Hospital at Home was found to be significantly more effective in terms of patient satisfaction and reduced joint stiffness and as least as effective as in-patient care in relation to levels of joint pain, joint disability and incidence of postoperative complications. In addition informal carers reported 107 positive comments compared with 36 negative comments related to HaH care and all except one of the 21 carers would choose HaH again in preference to in-patient care.

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Time costs associated with informal care for colorectal cancer: an investigation of the impact of alternative valuation methods

Background: A societal perspective in economic evaluation necessitates that all resources associated with a disease or intervention should be valued; however, informal care time costs are rarely considered.

Objective: We estimated time allocated to care by informal carers of colorectal cancer survivors; and investigated the impact of applying alternative valuation methods to this time.

Methods: Colorectal cancer cases (ICD10 C18-C20) diagnosed 6–30 months previously and identified from the National Cancer Registry Ireland were invited to provide details of informal carers. Carers completed a postal questionnaire. Time estimates per week associated with hospital-related and domestic-related care activities were collected for two phases: diagnosis and initial treatment (initial 3 months) and ongoing care (previous 30 days). Seven valuation scenarios, based on variants of the opportunity cost approach (OCA), and the proxy good approach (PGA), were considered. The base-case was OCA with all carer time valued at the average national wage.

Results: We received 154 completed questionnaires (response rate = 68 %). Average weekly time allocated to caring was 42.5 h in the diagnosis and initial treatment phase and 16.9 h in the ongoing care phase. Under the base-case, average weekly time costs were €295 (95 % CI 255–344) for hospital-related activities and €630 (95 % CI 543–739) for domestic-related activities in the diagnosis and initial treatment phase and €359 (95 % CI 293–434) in the ongoing care phase. PGA estimates were 23 % below the base-case. Only one alternative scenario (occupation and gender-specific wages for carers in paid work and replacement wages for non-working carers) surpassed base-case costs, and the difference was modest.

Conclusions: Overall, significant time is associated with informal caring in colorectal cancer. Different time valuation methods can produce quite different cost estimates. A standardised methodology for estimating informal care costs would facilitate better integration of these into economic evaluations.

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Informal home care and labor-force participation of household members.

In Germany, informal home care is preferred to professional care services in the public discussion as well as in legal care regulations. However, only minor importance is ascribed to the opportunity costs caregivers face. Therefore, this article explores the influence home care has on the labor supply of caregivers who cohabitate with the care recipient. I use data from the German Socio-Economic Panel from 2001 to 2007, which allows researchers to merge the characteristics of both groups for the first time. Owing to diverging gender roles, I examine female and male caregivers separately. The results show that having an individual in need of care in the household does not decrease labor supply to an economically relevant quantity. As providing care might be endogenous to the labor-supply decision, I test for endogeneity by using characteristics of care recipients as instruments and I additionally test for sample attrition. Moreover, the panel structure allows me to control for unobserved heterogeneity.

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The Liverpool Care Pathway for cancer patients dying in hospital medical wards: A before-after cluster phase II trial of outcomes reported by family members

Background: Hospital is the most common place of cancer death but concerns regarding the quality of end-of-life care remain.

Aim: Preliminary assessment of the effectiveness of the Liverpool Care Pathway on the quality of end-of-life care provided to adult cancer patients during their last week of life in hospital.

Design: Uncontrolled before–after intervention cluster trial.

Settings/participants: The trial was performed within four hospital wards participating in the pilot implementation of the Italian version of the Liverpool Care Pathway programme. All cancer patients who died in the hospital wards 2–4 months before and after the implementation of the Italian version of Liverpool Care Pathway were identified. A total of 2 months after the patient’s death, bereaved family members were interviewed using the Toolkit After-Death Family Interview (seven 0–100 scales assessing the quality of end-of-life care) and the Italian version of the Views of Informal Carers - Evaluation of Services (VOICES) (three items assessing pain, breathlessness and nausea-vomiting).

Results: An interview was obtained for 79 family members, 46 (73.0%) before and 33 (68.8%) after implementation of the Italian version of Liverpool Care Pathway. Following Italian version of Liverpool Care Pathway implementation, there was a significant improvement in the mean scores of four Toolkit scales: respect, kindness and dignity (+16.8; 95% confidence interval = 3.6–30.0; p = 0.015); family emotional support (+20.9; 95% confidence interval = 9.6–32.3; p < 0.001); family self-efficacy (+14.3; 95% confidence interval = 0.3–28.2; p = 0.049) and coordination of care (+14.3; 95% confidence interval = 4.2–24.3; p = 0.007). No significant improvement in symptom’ control was observed.

Conclusions: These results provide the first robust data collected from family members of a preliminary clinically significant improvement, in some aspects, of quality of care after the implementation of the Italian version of Liverpool Care Pathway programme. The poor effect for symptom control suggests areas for further innovation and development.

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Committed to carers: supporting carers of people at the end of life

Marie Curie campaigns to ensure that more people are able to be cared for and die at home. Previous research has shown that 63% of people would choose to die at home if they were terminally ill, however the reality in the UK is that just 21% of people die at home, while the majority (53%) die in hospital. This report describes the direct experiences of carers looking after someone at the end of life. It is based on interviews with 40 carers who were currently caring for a sick friend or relative or had been bereaved. The research was designed to explore how people experience caring for someone with a terminal illness in the context of their family, work and social lives. Some of the patients used hospice or hospital in-patient care, others remained at home. The separate chapters consider: the impact of caring for someone at the end of life; access to information and support; the place of care and place of death; and bereavement. It concludes with recommendations designed to ensure that more carers of someone at the end of life receive the support they need to keep caring.

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User profiling for coordinated and integrated care

Integrated care has been increasingly advocated as an approach to promote better coordination of services and quality of care at different levels. In this study, views were elicited from different users of the healthcare system (patients, informal carers and healthcare professionals) in four European countries. The views pertained to current states of care and the role that remote patient monitoring and telehealth in general can play to facilitate effective implementation of integrated care. Overall, services were perceived to be fragmented at different levels ranging from personal to system fragmentation. Approaches such as telehealth, remote patient monitoring and having specialised urgent clinics in primary care were positively perceived by users as possible solutions for tackling fragmented care and for promoting better integration of services.

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The £20 billion question: an inquiry into improving lives through cost-effective dementia services

The facts about the growing number of people with dementia in the UK and the associated costs are firmly established. It is well known that dementia is a significant and growing driver of demand for health and social care. The cost of dementia in the UK in 2010 was estimated to be £20 billion and this is expected to grow to over £27 billion by 2018. It is also clear that health and social care budgets are under extreme pressure and there is an urgent need to improve the cost-effectiveness of services. Given the high financial costs of dementia and the human cost of failing to provide good quality support, commissioners and planners will miss a vital opportunity if they do not treat dementia as a priority area for improving cost-effectiveness. The APPG believes there is ample opportunity for using resources more effectively while at the same time improving outcomes for people with dementia. The evidence in this report demonstrates that many areas have been able to not only achieve better outcomes for people with dementia but also to achieve greater value for money in dementia care, by making changes to service provision or adopting new ways of working. Many of the examples focus on earlier intervention to prevent crises or delay the need for more intensive types of support. Witnesses were also clear that integrated models of care are necessary. Professionals from across health and social care need to work closely and co-ordinate services to improve the efficiency and quality of dementia services. These findings should be incorporated within the current health and social care reforms, for example, by ensuring resources are focused on prevention and that commissioning is informed by a wide range of views. The APPG on Dementia considers that there is considerable potential to increase the cost-effectiveness of dementia services, while at the same time improving outcomes for people with dementia. We urge health and social care planners and providers to consider what they can do differently to achieve these ends. Given the considerable burden of dementia, improving the cost-effectiveness of dementia care could make a significant impact on the overall health and social care budget.

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Worry and time: the unseen costs of informal care

Objectives: The objective of this study is to examine the experiences of informal carers in terms of how their time spent caring is related to worry. Is worry about a care recipient a care practice, and if so, to what extent it can be understood temporally? Methods: Classical phenomenology underpinned this study. Three qualitative studies of people living with chronic illness in Australia were conducted between 2009 and 2013. Semi-structured interviews were conducted. Interviews were audio recorded and transcribed verbatim. Phenomenological thematic analysis of the data was undertaken. Results: Twenty-five informal carers participated. The findings pivot around three interconnected themes: time, worry and cost. Worry was identified as a temporally bound unseen cost to carers that informs carer identity irrespective of culture, ethnicity, or social status. Discussion: Worry is a practice that most carers report engaging in and it is one that comes with a temporal cost—it keeps people busy looking after the needs of others during the day and it keeps some people awake when they would rather be sleeping. Worry takes time and effort, it informs people’s construction of their own sense of self, motivates acts of care, and informs carers’ imaginings of what their future and that of their loved one(s) may entail.

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Can Fire and Rescue Services and the National Health Service work together to improve the safety and wellbeing of vulnerable older people? Design of a proof of concept study

Background: Older adults are at increased risk both of falling and of experiencing accidental domestic fire. In addition to advanced age, these adverse events share the risk factors of balance or mobility problems, cognitive impairment and socioeconomic deprivation. For both events, the consequences include significant injury and death, and considerable socioeconomic costs for the individual and informal carers, as well as for emergency services, health and social care agencies. Secondary prevention services for older people who have fallen or who are identifiable as being at high risk of falling include NHS Falls clinics, where a multidisciplinary team offers an individualised multifactorial targeted intervention including strength and balance exercise programmes, medication changes and home hazard modification. A similar preventative approach is employed by most Fire and Rescue Services who conduct Home Fire Safety Visits to assess and, if necessary, remedy domestic fire risk, fit free smoke alarms with instruction for use and maintenance, and plan an escape route. We propose that the similarity of population at risk, location, specific risk factors and the commonality of preventative approaches employed could offer net gains in terms of feasibility, effectiveness and acceptability if activities within these two preventative approaches were to be combined.

Methods/Design: This prospective proof of concept study, currently being conducted in two London boroughs, (Southwark and Lambeth) aims to reduce the incidence of both fires and falls in community-dwelling older adults. It comprises two concurrent 12-month interventions: the integration of 1) fall risk assessments into the Brigade's Home Fire Safety Visit and 2) fire risk assessments into Falls services by inviting older clinic attendees to book a Visit. Our primary objective is to examine the feasibility and effectiveness of these interventions. Furthermore, we are evaluating their acceptability and value to key stakeholders and services users.

Discussion: If our approach proves feasible and the risk assessment is both effective and acceptable, we envisage advocating a partnership model of working more broadly to fire and rescue services and health services in Britain, such that effective integration of preventative services for older people becomes routine for an ageing population.

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Improving dementia services in England: an interim report

The National Dementia Strategy, launched on 3 February 2009, aims to transform the quality of dementia care in England. It sets out initiatives designed to make the lives of people with dementia, their carers and families better and more fulfilled. It aims to do this by increasing awareness of dementia, ensuring early diagnosis and intervention and radically improving the quality of care that people with the condition receive. This interim report into the implementation of the Strategy identified three risk areas where action is urgently needed. These are: inadequate information on costing leading to a risk that local decisions may not be well-evidenced; a lack of leadership, particularly at local commissioning level; a lack of strong levers such as benchmarking means there is a risk that dementia will not be given the priority status required. The report makes ten recommendations aimed at ameliorating these risks.

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Macmillan Carers Schemes in England: results of a multicentre evaluation

Maintaining sick and elderly people at home, particularly as they approach the end of life, is a long-established challenge for health and social care services. Over the past 30 years palliative care providers have attempted a variety of innovations in this area. We report on a descriptive study of seven pilot Macmillan Carers Schemes in England. The schemes sought to provide practical and emotional help to cancer patients and families living in their own homes. Data are available on 624 referrals to the schemes over a 1-year period. Emphasizing comparisons between schemes, we report on reasons for and sources of referral, services offered, number and duration of visits and tasks undertaken. We consider the views of informal carers who made use of the service, the perceptions of Macmillan carers themselves, and we compare financial costs of schemes. It is concluded that the schemes have the potential for further development but face problems, which reflect on their borderline position between ‘health’ and ‘social care’. Current policy changes may be beneficial to the schemes in this respect.

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Supported cognitive-behavioural self-help versus treatment-as-usual for depressed informal carers of stroke survivors (CEDArS): study protocol for a feasibility randomized controlled trial

Background: Increased life expectancy has resulted in a greater provision of informal care within the community for patients with chronic physical health conditions. Informal carers are at greater risk of poor mental health, with one in three informal carers of stroke survivors experiencing depression. However, currently no psychological treatments tailored to the unique needs of depressed informal carers of stroke survivors exist. Furthermore, informal carers of stroke survivors experience a number of barriers to attending traditional face-to-face psychological services, such as lack of time and the demands of the caring role. The increased flexibility associated with supported cognitive behavioral therapy self-help (CBTsh), such as the ability for support to be provided by telephone, email, or face-to-face, alongside shorter support sessions, may help overcome such barriers to access. CBTsh, tailored to depressed informal carers of stroke survivors may represent an effective and acceptable solution.

Methods/Design: This study is a Phase II (feasibility) randomized controlled trial (RCT) following guidance in the MRC Complex Interventions Research Methods Framework. We will randomize a sample of depressed informal carers of stroke survivors to receive CBT self-help supported by mental health paraprofessionals, or treatment-as-usual. Consistent with the objectives of assessing the feasibility of trial design and procedures for a potential larger scale trial we will measure the following outcomes: a) feasibility of patient recruitment (recruitment and refusal rates); (b) feasibility and acceptability of data collection procedures; (c) levels of attrition; (d) likely intervention effect size; (e) variability in number, length and frequency of support sessions estimated to bring about recovery; and (f) acceptability of the intervention. Additionally, we will collect data on the diagnosis of depression, symptoms of depression and anxiety, functional impairment, carer burden, quality of life, and stroke survivor mobility skill, self-care and functional ability, measured at four and six months post-randomization.

Discussion: This study will provide important information for the feasibility and design of a Phase III (effectiveness) trial in the future. If the intervention is identified to be feasible, effective, and acceptable, a written CBTsh intervention for informal carers of stroke survivors, supported by mental health paraprofessionals, could represent a cost-effective model of care.

Trial registration: Current Controlled Trials ISRCTN63590486.

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Training care givers of stroke patients : economic evaluation

Background Training care givers reduces their burden and improves psychosocial outcomes in care givers and patients at one year. However, the cost effectiveness of this approach has not been investigated. Objective To evaluate the cost effectiveness of caregiver training by examining health and social care costs, informal care costs, and quality adjusted life years in care givers. Design A single, blind, randomised controlled trial. Setting Stroke rehabilitation unit. Subjects 300 stroke patients and their care givers. Interventions Caregiver training in basic nursing and facilitation of personal care techniques compared with no caregiver training. Main outcome measures Health and social care costs, informal care costs, and quality adjusted life years in care givers over one year after stroke. Results Total health and social care costs over one year for patients whose care givers received training were significantly lower (mean difference -£4043 ($7249; €, 95% confidence interval -£6544 to -£1595). Inclusion of informal care costs, which were similar between the two groups, did not alter this conclusion. The cost difference was largely due to differences in length of hospital stay. The EQ-5D did not detect changes in quality adjusted life years in care givers. Conclusion Compared with no training, caregiver training during rehabilitation of patients reduced costs of care while improving overall quality of life in care givers at one year.

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Managing a dual role: working carers in social services

The article addresses the issue of working carers in social services - employees who have caring responsibilities for adults outside work. Where employers fail to support carers, costs can be high. Ways of developing carer-friendly policies are considered. 

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Continuing to pay : the consequences for family caregivers of an older person's admission to a care home

This paper aims to discuss the reasons why caregiving in the community had ended for a sample of dependent older people, two-thirds of whom had dementia. Comparisons are made between the situation of a spouse caring for a partner and a daughter or son caring for a parent in a separate household. Spouses in the study had often sustained a greater burden before caregiving collapsed than had daughters or sons. They were less likely, however, to have had support from the home care service. When caregiving in the community ended and the dependent older person entered a care home, family caregivers themselves often had a financial price to pay. Currently spouses have a legalliability to contribute to a partner’s care costs. The implementation of this liability depended on individual local authority policies and the views of the individual social worker doing the financial assessment. Because of the UK’s means-testing rules, daughters and sons were often penalized because a parent’s assets that they might have inherited had to be used to meet the care home costs. Resentment at being disinherited was related to the daughter’s or son’s family situation. Those with children or grandchildren themselves were far more likely to be angry than those without children.

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Care management and care provision for older relatives amongst employed informal care-givers

This paper examines care management, or ‘managerial care’, a type of informal care for older adults that has been relatively neglected by researchers. While previous research has acknowledged that care-giving may involve tasks other than direct ‘hands-on’ care, the conceptualisation of managerial care has often been vague and inconsistent. This study is the first explicitly to investigate managerial care amongst a large sample of carers. In our conceptualisation, care management includes care-related discussions with other family members or the care recipient about the arrangements for formal services and financial matters, doing relevant paperwork, and seeking information. The study examines the prevalence of this type of care, the circumstances under which it occurs, its variations by care-giver characteristics, and its impact on the carers. We drew from the Canadian CARNET ‘Work and Family Survey’ a sub-sample of 1,847 full-time employed individuals who were assisting older relatives. The analysis shows that managerial care is common, distinct from other types of care, a meaningful construct, and that most care-givers provide both managerial and direct care. Care management includes both the orchestration of care and financial and bureaucratic management. Providing managerial care generates stress amongst women and interferes with work amongst men, and the aspect that generates the greatest personal and job costs amongst both men and women is the orchestration of care.

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The demographic characteristics and economic activity patterns of carers over 50: evidence from the English Longitudinal Study of Ageing

Studies on informal care provision have often focused on the provision of care for persons with a long term physical or mental ill-health or disability, or problems related to old age. However, the provision of care and support more broadly, for example in the form of childcare for grandchildren, can also impact on various aspects of a carer's life, such as their employment (if under the state retirement age), lifetime earnings and, by extension, pension income in later life. This article uses data from Wave 3 of the English Longitudinal Study of Ageing (ELSA) to explore the demographic characteristics, caring patterns, health status and economic activity patterns of carers aged over 50 in England. The results suggest that the nature of care provision differs across age groups, and that caring can be quite a different experience for older men and women. This article also sheds light on the characteristics of ‘round-the-clock’ carers, a relatively under-researched group which makes up just over one fifth of all carers aged 50 and over.

This article uses data from Wave 3 of the English Longitudinal Study of Ageing (ELSA) to explore the demographic characteristics, caring patterns, health status and economic activity patterns of carers aged over 50 in England.

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Guidelines for conducting and reporting economic evaluation of fall prevention strategies

Summary: Falls in older people result in substantial health burden. Compelling evidence indicates that falls can be prevented. We developed comprehensive guidelines for economic evaluations of fall prevention interventions to facilitate publication of high-quality economic evaluations of the effective strategies and aid decision making.

Introduction: The importance of economics applied to falls and fall prevention in older people has largely been overlooked. The use of different methodologies to assess the costs and health benefits of the interventions and their comparators and the inconsistent reporting in the studies limits the usefulness of these economic evaluations for decision making. We developed guidelines to encourage and facilitate completion of high-quality economic evaluations of effective fall prevention strategies.

Methods: We used a generic checklist for economic evaluations as a platform to develop comprehensive guidelines for conducting and reporting economic evaluations of fall prevention strategies. We considered the many challenges involved, particularly in identifying, measuring, and valuing the relevant cost items.

Results: We recommend researchers include cost outcomes and report incremental cost-effectiveness ratios in terms of falls prevented and quality adjusted life years in all clinical trials of fall prevention interventions. Studies should include the following cost categories: (1) implementing the intervention, (2) delivering the comparator group intervention, (3) total health care costs, (4) costs of fall-related health care resource use, and (5) personal and informal carer opportunity costs.

Conclusions: This paper provides a timely benchmark to promote comparability and consistency for conducting and reporting economic evaluations of fall prevention strategies.

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Facts about Carers

Facts about carers 2015 is a Carers UK digest and analysis of all the major research and statistics about carers in the UK.

This briefing covers:

  • Who are carers?
  • How many people are carers?
  • Number of hours of care provided
  • Valuing carers
  • Carer demographics
  • What kind of care do carers provide?
  • Who do they care for?
  • The impact of caring
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Quality of life measures for carers for people with dementia: measurement issues, gaps in research and promising paths

Background: providing support to a family member with dementia often comes at a cost to the quality of life (QoL) of the carer (caregiver), giving rise to current and future unmet needs for health and social care and support themselves. These have important implications for costeffective health and social care support services and pathways. This article summarises the findings of a scoping review of the literature on QoL measures for carers of people with dementia that was commissioned by the Medical Research Council to address what is ‘state of the art’ in measurement and identification, any gaps in the evidence base, and challenges for further research.

Method: a scope of the literature using Medline and Psychlit (all years) as these are particularly relevant to health psychology was undertaken in March 2013, using combinations of the following keywords: quality of life, measure, scale, caregiver (including carer), chronic illness (the term long-term condition is generally captured under this phrase), dementia, cognitive impairment, Alzheimer’s disease. Results: there is a dearth of carer-reported QoL measures, in contrast to the existence of proxy scales for carers which are used to measure the patient’s/client’s QoL (prevalent in relation to dementia). Several methodological challenges were identified.

Conclusion: caring for people with dementia often has both negative and positive consequences which need inclusion in measures but these may vary by individual and over time. The lack of consensus about what to measure and how in QoL of carers of people with dementia does not help practitioners or service funders. Measures need to be appropriate for younger and older carers, type of carer and caring tasks, and be sensitive to cultural and sociodemographic differences.

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The initial evaluation of the Scottish Telecare Development Program

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.

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Inter-relationships between the economic and emotional consequences of colorectal cancer for patients and their families: a qualitative study

Background: While the evidence-base concerning the economic impact of cancer for patients and their families/carers has grown in recent years, there is little known about how emotional responses to cancer influence this economic impact. We investigated the economic costs of cancer in the context of patients’ emotions and how these both shaped the patient and family burden.

Methods: Health professionals from six hospitals invited patients diagnosed with colorectal cancer (ICD10 C18-C20) within the previous year to take part in the study. Semi-structured face-to-face interviews were conducted with patients and, where available, a family member. Interviews covered medical and non-medical costs incurred as a result of cancer and the impact of these on the lives of the patient and their family. Interviews were audio-recorded. Recordings were transcribed verbatim and these data were analysed qualitatively using thematic content analysis.

Results: Twenty-two patients with colorectal cancer (17 colon and 5 rectal; 14 women and 8 men) were interviewed; 6 were accompanied by a family member. Important cancer-related financial outlays included: travel and parking associated with hospital appointments; costs of procedures; increased household bills; and new clothing. Cancer impacted on employed individuals’ ability to work and depressed their income. The opportunity cost of informal care for carers/family members, especially immediately post-diagnosis, was a strong theme. All patients spoke of the emotional burden of colorectal cancer and described how this burden could lead to further costs for themselves and their families by limiting work and hindering their ability to efficiently manage their expenses. Some patients also spoke of how economic and emotional burdens could interact with each other. Support from employers, family/carers and the state/health services and patients’ own attitudes influenced this inter-relationship.

Conclusions: The economic impact of colorectal cancer on patients and their families is complex. This study suggests that the economic costs and the emotional impact of cancer are often related and can exacerbate each other, but that various factors can meditate this inter-relationship.

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Care coordination/home-telehealth for veterans with stroke and their caregivers: Addressing an unmet need

Background: Stroke is a life-disrupting, costly event for many stroke patients and their families. An estimated 4.8 million stroke survivors are living in the community with some level of disability, and the incidence of stroke is expected to rise with correspondingly higher costs, both in dollars and other forms of burden for families of patients with stroke. Approximately 80,000 veterans have experienced a stroke, leaving approximately 40% with moderate residual impairments and 15%–30% with severe residual disability. Purpose: The purpose of this study was to identify postdischarge needs of veterans with stroke and their caregivers and to identify how to design a care coordination/home-telehealth (CC/HT) program to address these needs. Method: Veterans and their caregivers (N = 22) were interviewed about their experiences with stroke, their postdischarge stroke recovery needs, and their experiences with the Veterans Administration’s existing Care Coordination/Home-Telehealth (CC/HT) program. Data were analyzed using the process of grounded dimensional analysis. Results: Core concepts identified were (a) assessing and managing the residual effects of stroke, and (b) shifting roles and responsibilities. Conclusion: The findings suggest that a comprehensive care coordination program that includes home telehealth could aid veterans and their caregivers in managing stroke recovery across the continuum of care at home and within the community. The results of the study can provide elements to be included in the CC/HT program.

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Care and support: what's changing?

Information on what the changes introduced by the Care Act will mean for carers and the cared for. The resource provides an explanation of care and support in England and outlines key elements of the act, including: deferred payment agreements; needs and eligibility; support for carers; and cap on care costs.

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Primary caregivers of cancer patients in the palliative phase: a path analysis of variables influencing their burden

Research has shown that several variables influence the burden of primary caregivers of cancer patients staying at home in the palliative phase, but the associations between these variables have hardly been explored. The aim of this study was to examine the associations of theory-driven variables with the caregivers’ burden by means of path analysis. The sample consisted of 96 caregivers of cancer patients in the palliative phase staying at home recruited from a hospital trust in Norway. The dimensions of burden from the Caregiver Reaction Assessment, namely self esteem, lack of family support, impact on finances, and impact on daily schedule, were used as the dependent variable. The following independent variables were tested in the models: the patients’ levels of pain, fatigue, and nausea; and the caregivers’ physical quality of life, anxiety and depression, and social support.

The Partial Least Squares approach to structural equation modelling was used for the path analysis. Model 1 shows the direct associations between the independent variables and the dependent variable, explaining 16% of the variance in caregiver burden. Model 1 supports the finding that only caregivers’ depression has a direct significant association with caregiver burden, and shows further that the effects of the other independent variables on burden are mediated through depression. In Model 2, anxiety and depression are mediating factors between three other independent variables and caregiver burden, and 12% of the variance is explained. Model 2 supports none of the independent variables as antecedents of burden. Testing of the models suggested that caregivers’ depression was the main factor associated with caregiver burden, but also an important mediator of indirect associations of indirect associations of caregivers’ anxiety and physical health.

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Informal care and labour force participation among middle-aged women in Spain

Informal care is today the form of support most commonly used in Spain by those who need help in order to carry out basic daily activities. The potential labour opportunity costs incurred by Spanish informal carers have not as yet been quantified. In this paper we use the Spanish subsample of the European Community Household Panel (1994–2001) to estimate an econometric model which we exploit to examine the effects of various types of informal care on labour market outcomes. Our results reveal the existence of non-negligible costs in terms of foregone employment for carers who live with the dependent person and/or provide more than 28 h of care/week. We also find that providing care for more than a year has negative effects on employment. Nonetheless, there seems to be no contemporaneous employment effects associated to either starting or ending an episode of care.

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A structured training programme for caregivers of inpatients after stroke (TRACS) : a cluster randomised controlled trial and cost-effectiveness analysis

Background: Most patients who have had a stroke are dependent on informal caregivers for activities of daily living. The TRACS trial investigated a training programme for caregivers (the London Stroke Carers Training Course, LSCTC) on physical and psychological outcomes, including cost-effectiveness, for patients and caregivers after a disabling stroke.

Methods: We undertook a pragmatic, multicentre, cluster randomised controlled trial with a parallel cost-effectiveness analysis. Stroke units were eligible if four of five criteria used to define a stroke unit were met, a substantial number of patients on the unit had a diagnosis of stroke, staff were able to deliver the LSCTC, and most patients were discharged to a permanent place of residence. Stroke units were randomly assigned to either LSCTC or usual care (control group), stratified by geographical region and quality of care, and using blocks of size 2. Patients with a diagnosis of stroke, likely to return home with residual disability and with a caregiver providing support were eligible. The primary outcome for patients was self-reported extended activities of daily living at 6 months, measured with the Nottingham Extended Activities of Daily Living (NEADL) scale. The primary outcome for caregivers was self-reported burden at 6 months, measured with the caregivers burden scale (CBS). We combined patient and caregiver costs with primary outcomes and quality-adjusted life-years (QALYs) to assess cost-effectiveness. This trial is registered with, number ISRCTN 49208824.

Findings: We assessed 49 stroke units for eligibility, of which 36 were randomly assigned to either the intervention group or the control group. Between Feb 27, 2008, and Feb 9, 2010, 928 patient and caregiver dyads were registered, of which 450 were in the intervention group, and 478 in the control group. Patients' self-reported extended activities of daily living did not differ between groups at 6 months (adjusted mean NEADL score 27·4 in the intervention group versus 27·6 in the control group, difference –0·2 points [95% CI –3·0 to 2·5], p value=0·866, ICC=0·027). The caregiver burden scale did not differ between groups either (adjusted mean CBS 45·5 in the intervention group versus 45·0 in the control group, difference 0·5 points [95% CI –1·7 to 2·7], p value=0·660, ICC=0·013). Patient and caregiver costs were similar in both groups (length of the initial stroke admission and associated costs were £13 127 for the intervention group and £12 471 for the control group; adjusted mean difference £1243 [95% CI –1533 to 4019]; p value=0·380). Probabilities of cost-effectiveness based on QALYs were low.

Interpretation: In a large scale, robust evaluation, results from this study have shown no differences between the LSCTC and usual care on any of the assessed outcomes. The immediate period after stroke might not be the ideal time to deliver structured caregiver training.

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The caregiving journey for family members of relatives with cancer: how do they cope?

Family caregivers need adequate support from healthcare professionals to complete the demands associated with caregiving with minimal impact on their own health and well-being. An optimal balance of provision of care between family and support services has not been achieved; therefore, this literature review investigates how family caregivers endure and cope with the challenges of caring for an adult relative with cancer. This review considered the characteristics of caregivers and their functioning, the external and internal supports that help them cope, the ongoing challenges as they journey along the caregiving trajectory, the personal costs of caregiving, and how caregivers cope with supporting their family members through to the end of their journeys. The literature provides an abundance of research on the numerous challenges encountered by families living with cancer; however, little research has been conducted on the coping strategies used by family caregivers at specific stages along the illness trajectory that either optimize or hinder personal recovery. Even less information is available on interventions nurses can introduce to ease the caregiving burden. Improving nurses' understanding of the stressors and unmet needs associated with caregiving is fundamental to the development of effective family-focused clinical interventions.

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A cost evaluation of multiple sclerosis

As a chronic and disabling disease, multiple sclerosis (MS) is extremely costly, both for the individual and the family, as well as far the society. Early onset, long duration and effects on employment contribute to the extensive costs related to the illness. Thus far, studies conducted in developed countries have demonstrated that direct costs, including treatment (prior to the approval of beta interferon), medical visits, hospitalization, assistance, etc., are much lower in respect to indirect costs, such as loss of income from reduction of work activity for patients and carers, which account for up to 75% of the total cost. Informal care represents a heavy burden for the families of disabled persons and little is known about the 'intangible' costs of MS, such as those related to the influence of the disease on quality of life. In addition, the cost/benefit ratio for expensive new therapies, such as beta interferon, remains to be determined.

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The fiscal impact of informal caregiving to home care recipients in Canada: How the intensity of care influences costs and benefits to government

he objective of this study was to estimate the annual costs and consequences of unpaid caregiving by Canadians from a government perspective. We estimated these costs both at the individual and population levels for caregivers aged 45 and older. We conducted a cost-benefit analysis where we considered the costs of unpaid caregiving to be potential losses in income tax revenues and changes in social assistance payments and the potential benefit of reduced paid care expenditures. Our costing methods were based on multivariate analyses using the 2007 General Social Survey, a cross-sectional survey of 23,404 individuals. We determined the differential probability of employment, wages, and hours worked by caregivers of varying intensity versus non-caregivers. We also used multivariate analysis to determine how receiving different intensities of unpaid care impacted both the probability of receiving paid care and the weekly hours of paid care received. At the lowest intensities of caregiving, there was a net benefit to government from caregiving, at both the individual and population levels. At the population level, the net benefit to government was estimated to be $4.4 billion for caregivers providing less than five hours of weekly care. At the highest intensity of caregiving, there was a net cost to government of $641 million. Our overall findings were robust to a number of changes applied in our sensitivity analysis. We found that the factor with the greatest impact on cost was the probability of labour force participation. As the biggest cost driver appears to be the higher likelihood of intense caregivers dropping out of the labour force, government policies that enable intense caregivers to balance caregiving with employment may help to mitigate these losses.

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Your next of kin or your own career? Caring and working among the 50+ of Europe

An increasing demand for both formal and informal care is likely to result from the ongoing demographic transition at the same time as there is a further move away from the traditional domestic division of labour. Public policy-making that aims at increasing the supply of informal care necessitates knowledge about the relative importance of various incentives for individual care providers. This paper takes as a point of departure that the willingness to supply informal care is partly explained by the extent to which it adversely affects labour-market outcomes and analyses the effect on labour-market outcomes of providing informal care to one's elderly parent(s) among the 50+ of Europe. Data from SHARE (Survey of Health, Ageing, and Retirement in Europe) was used to examine the association between, on the one hand, hours of informal care provided and, on the other, (1) the probability of employment, (2) hours worked, and (3) wages, respectively. The results suggest that giving informal care to one's elderly parents is associated with significant costs in terms of foregone labour-market opportunities and that these adverse effects vary between countries.

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New networked technologies and carers of people with dementia: an interview study

Dementia is one of the greatest contemporary health and social care challenges, and novel approaches to the care of its sufferers are needed. New information and communication technologies (ICT) have the potential to assist those caring for people with dementia, through access to networked information and support, tracking and surveillance. This article reports the views about such new technologies of 34 carers of people with dementia. We also held a group discussion with nine carers for respondent validation. The carers' actual use of new ICT was limited, although they thought a gradual increase in the use of networked technology in dementia care was inevitable but would bypass some carers who saw themselves as too old. Carers expressed a general enthusiasm for the benefits of ICT, but usually not for themselves, and they identified several key challenges including: establishing an appropriate balance between, on the one hand, privacy and autonomy and, on the other: maximising safety; establishing responsibility for and ownership of the equipment and who bears the costs; the possibility that technological help would mean a loss of valued personal contact; and the possibility that technology would substitute for existing services rather than be complementary. For carers and dementia sufferers to be supported, the expanding use of these technologies should be accompanied by intensive debate of the associated issues.

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Differential impacts of care- giving across three caregiver groups in Canada: end- of- life care, long- term care and short- term care

Using data from Statistic Canada's General Social Survey Cycle 21 (GSS 2007), this study explores whether differences exist in the impacts of care-giving among three groups of caregivers providing informal care either in the caregiver's or recipient's home, or in other locations within the community: (i) those providing end-of-life (EOL) care (n = 471); (ii) those providing long-term care (more than 2 years) for someone with a chronic condition or long-term illness (n = 2722); and (iii) those providing short-term care (less than 2 years) for someone with a chronic condition or long-term illness (n = 2381). This study lays out the variation in sociodemographic characteristics across the three caregiver groups while also building on our understanding of the differential impacts of care-giving through an analysis of determinants. All three groups of caregivers shared a number of sociodemographic characteristics, including being female, married, employed and living in a Census Metropolitan Area (CMA). With respect to health, EOL caregivers were found to have significantly higher levels of ‘fair or poor’ self-assessed health than the other two groups. Overall, the findings suggest that EOL caregivers are negatively impacted by the often additional role of care-giving, more so than both short-term and long-term caregivers. EOL caregivers experienced a higher proportion of negative impacts on their social and activity patterns. Furthermore, EOL caregivers incurred greater financial costs than the other two types of informal caregivers. The impacts of EOL care-giving also negatively influence employment for caregivers when compared with the other caregiver groups. Consequently, EOL caregivers, overall, experienced greater negative impacts, including negative health outcomes, than did long-term or short-term caregivers. This provides the evidence for the assertion that EOL care-giving is the most intense type of care-giving, potentially causing the greatest caregiver burden; this is shown through the greater negative impacts experienced by the EOL caregivers when compared with the short-term and long-term caregivers.

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Reducing caregiver stress with internet-based interventions: a systematic review of open-label and randomized controlled trials

Objective The high level of stress associated with caring for others with medical conditions has been recognized for some time. Reducing caregiver stress can improve caregiver quality of life as well as improve the care they provide to loved ones. This systematic review assesses the effectiveness of internet-based interventions to decrease caregiver stress.

Materials and methods A comprehensive literature search of Ovid MEDLINE (1946–2013), Embase (1988–2013), PsycINFO (1987–2013), and CINAHL was conducted using terms related to caregiver and internet-based interventions. Internet-based interventions involving informal caregivers in an open-label or randomized controlled trial setting were included. A pair of raters independently reviewed all published abstracts. Data regarding participants, interventions, and outcomes were extracted and, for randomized trials, methodology quality was also reviewed.

Results Eight open-label trials met the review criteria: three showed positive benefit in reducing caregiver stress, four were partially positive (some outcomes positive, others negative), and one was a negative study. Sixteen randomized trials met the review criteria: six showed positive benefit, five were partially positive, and five were negative. There were no clear patterns as to the variables (such as study duration and complexity of intervention) associated with better outcomes, although earlier studies typically had more negative outcomes.

Discussion Internet-based interventions were mostly effective in reducing aspects of caregiver stress and improving their well-being. Further studies to assess outcomes for caregivers and their recipients’ health, different technology delivery methods, and the cost of such interventions are needed.

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The extent and limits of solidarity in Dutch health care

Solidarity and equal access are twin principles in the Dutch health care system: solidarity between the rich and poor and among people with high and low risks formally guarantees equal access to health care services. However, in the past few years government policies, guided by the ideology of market reform and free choice, have resulted in patterns of inequality that favour privately insured over sickness fund insured. In the meantime, the level of public support for the principles of solidarity and equal access is dropping. A significantly larger portion of the Dutch people now believes that it would be too costly to grant everyone the right to all medical treatments possible. An important reason for the decline of solidarity and equal accessibility is the scarcity of resources. The scarcity of resources and the waiting lists resulting from it will reduce the extent of the benefits package and the access to the care services of the health system. The better-off will have the resources to receive care services that are not part of the basic package. Moreover, the scarcity of resources will affect the readiness in society to provide informal care. Opposed to the compulsory macro solidarity of the health insurance system, informal care is based on a voluntary kind of solidarity in which personal choice plays an important role. Waiting lists and diminishing professional support weaken this readiness, as such support is a necessary condition for informal carers to keep caring for their relatives and friends. Because the informal care system is a necessary supplement to the formal system of care, the lack of help offered by the latter will in the end endanger the solidarity not only in informal care, but in the institutional care system as well.

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Palliative Care in chronic Kidney diSease: the PACKS study--quality of life, decision making, costs and impact on carers in people managed without dialysis

Background: The number of patients with advanced chronic kidney disease opting for conservative management rather than dialysis is unknown but likely to be growing as increasingly frail patients with advanced renal disease present to renal services. Conservative kidney management includes ongoing medical input and support from a multidisciplinary team. There is limited evidence concerning patient and carer experience of this choice. This study will explore quality of life, symptoms, cognition, frailty, performance decision making, costs and impact on carers in people with advanced chronic kidney disease managed without dialysis and is funded by the National Institute of Health Research in the UK.

Methods: In this prospective, multicentre, longitudinal study, patients will be recruited in the UK, by renal research nurses, once they have made the decision not to embark on dialysis. Carers will be asked to ‘opt-in’ with consent from patients. The approach includes longitudinal quantitative surveys of quality of life, symptoms, decision making and costs for patients and quality of life and costs for carers, with questionnaires administered quarterly over 12 months. Additionally, the decision making process will be explored via qualitative interviews with renal physicians/clinical nurse specialists.

Discussion: The study is designed to capture patient and carer profiles when conservative kidney management is implemented, and understand trajectories of care-receiving and care-giving with the aim of optimising palliative care for this population. It will explore the interactions that lead to clinical care decisions and the impact of these decisions on informal carers with the intention of improving clinical outcomes for patients and the experiences of care givers.

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Effects of case management in community aged care on client and carer outcomes : a systematic review of randomized trials and comparative observational studies

Background: Case management has been applied in community aged care to meet frail older people’s holistic needs and promote cost-effectiveness. This systematic review aims to evaluate the effects of case management in community aged care on client and carer outcomes.

Methods: We searched Web of Science, Scopus, Medline, CINAHL (EBSCO) and PsycINFO (CSA) from inception to 2011 July. Inclusion criteria were: no restriction on date, English language, community-dwelling older people and/or carers, case management in community aged care, published in refereed journals, randomized control trials (RCTs) or comparative observational studies, examining client or carer outcomes. Quality of studies was assessed by using such indicators as quality control, randomization, comparability, follow-up rate, dropout, blinding assessors, and intention-to-treat analysis. Two reviewers independently screened potentially relevant studies, extracted information and assessed study quality. A narrative summary of findings were presented.

Results: Ten RCTs and five comparative observational studies were identified. One RCT was rated high quality. Client outcomes included mortality (7 studies), physical or cognitive functioning (6 studies), medical conditions (2 studies), behavioral problems (2 studies) , unmet service needs (3 studies), psychological health or well-being (7 studies) , and satisfaction with care (4 studies), while carer outcomes included stress or burden (6 studies), satisfaction with care (2 studies), psychological health or well-being (5 studies), and social consequences (such as social support and relationships with clients) (2 studies). Five of the seven studies reported that case management in community aged care interventions significantly improved psychological health or well-being in the intervention group, while all the three studies consistently reported fewer unmet service needs among the intervention participants. In contrast, available studies reported mixed results regarding client physical or cognitive functioning and carer stress or burden. There was also limited evidence indicating significant effects of the interventions on the other client and carer outcomes as described above.

Conclusions: Available evidence showed that case management in community aged care can improve client psychological health or well-being and unmet service needs. Future studies should investigate what specific components of case management are crucial in improving clients and their carers’ outcomes.

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Good practice in European integration: Lessons from the AIDA Project

Introduction: Interest in the integration of health and social care services has grown in recent years amongst all Governments in Europe in light of the increasing numbers of older people and those affected by chronic illnesses. This poster offers a review of the “Album of 10 Good Practices of integration at European level” carried out within the Advancing Integration for a Dignified Ageing (AIDA)- Project ( This was funded by EU Progress Program with the purpose of highlighting common aspects of effectiveness. Methods: The AIDA Project Consortium developed a criteria for selection of good practices on the basis of most relevant conceptual frameworks on integrated health and social care for older people. 28 initiatives were selected by an Advisory Board (AB) composed by five international experts in the field. The provider/ coordinator of each selected initiative (or a lead academic with an interest in the project) has provided an overview of the project, the legal and social context in which it was set, enablers and barriers, and evaluation of impact. The case-studies were then analysed to highlight success factors and impact on users, service providers and overall health and social care systems. Results:description of the case-studies

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Changing economic and social roles : the experience of four cohorts of mid-life individuals in Britain, 1985-2000

Men and women in Great Britain are increasingly involved in a variety of economic and social roles, particularly during their mid-life period. This article examines the changes in role occupancy across four birth cohorts passing through mid-life over the period 1985-2000. Data from the General Household Survey is used to investigate the occupancy of four key roles: 'partner', 'parent', 'carer' and 'paid worker', analysing separate and multiple role occupancies and level of commitment to a particular role. The implications of the findings for health and employment policies is also discussed. 

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Costs and quality of life associated with acute upper gastrointestinal bleeding in the UK: cohort analysis of patients in a cluster randomised trial

Objectives Data on costs associated with acute upper gastrointestinal bleeding (AUGIB) are scarce. We provide estimates of UK healthcare costs, indirect costs and health-related quality of life (HRQoL) for patients presenting to hospital with AUGIB.

Setting Six UK university hospitals with >20 AUGIB admissions per month, >400 adult beds, 24 h endoscopy, and on-site access to intensive care and surgery.

Participants 936 patients aged ≥18 years, admitted with AUGIB, and enrolled between August 2012 and March 2013 in the TRIGGER trial of AUGIB comparing restrictive versus liberal red blood cell (RBC) transfusion thresholds.

Primary and secondary outcome measures Healthcare resource use during hospitalisation and postdischarge up to 28  days, unpaid informal care, time away from paid employment and HRQoL using the EuroQol EQ-5D at 28  days were measured prospectively. National unit costs were used to value resource use. Initial in-hospital treatment costs were upscaled to a UK level.

Results Mean initial in-hospital costs were £2458 (SE=£216) per patient. Inpatient bed days, endoscopy and RBC transfusions were key cost drivers. Postdischarge healthcare costs were £391 (£44) per patient. One-third of patients received unpaid informal care and the quarter in paid employment required time away from work. Mean HRQoL for survivors was 0.74. Annual initial inhospital treatment cost for all AUGIB cases in the UK was estimated to be £155.5 million, with exploratory analyses of the incremental costs of treating hospitalised patients developing AUGIB generating figures of between £143 million and £168 million.

Conclusions AUGIB is a large burden for UK hospitals with inpatient stay, endoscopy and RBC transfusions as the main cost drivers. It is anticipated that this work will enable quantification of the impact of cost reduction strategies in AUGIB and will inform economic analyses of novel or existing interventions for AUGIB.

Trial registration number ISRCTN85757829 and NCT02105532.

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Empowering carers to reconstruct their finances

This paper reports a welfare rights intervention for carers of dying people through seminars to help them organise family finances to deal with additional costs of the final illness, funeral costs and reconstruction of family finances after death. Seminars on financial affairs were provided to 103 carers and service users, and were evaluated by questionnaires. The seminars were very positively received by attenders, who felt better informed, but were not necessarily more confident in dealing with financial problems. The positive response was maintained for several months after the seminars. A number of features of the educational, business-like approach were potentially empowering, but this strategy needs to be part of a wider strategy of information-giving and support to meet the needs of carers for whom such an approach is not suitable.

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Economic Burden And Health-Related Quality Of Life Of Patients With Cystic Fibrosis In Bulgaria

Objective: The aim of this study was to determine the economic burden from a societal perspective and health-related quality of life (HRQOL) of patients with cystic fibrosis (CF) in Bulgaria.

Materials and methods: We conducted a cross-sectional study of 33 patients with CF and 17 caregivers from Bulgaria. Data on socio-demographic characteristics, health resource utilisation, informal care, labor productivity losses and HRQOL were collected from questionnaires completed by patients or their caregivers. HRQOL was evaluated with the EuroQol 5-domain (EQ-5D-3L) questionnaire.

Results: Median annual costs of CF in Bulgaria were € 24 152 per patient in 2012 as a reference year. Median annual costs for children were found to be significantly higher than those for adults – € 31 945 vs. € 15 714 (p = 0.012). This outcome came from statistically significant differences in costs for main informal carer (p < 0.001) and costs for other informal carers (p = 0.022). As a single cost item, drugs had the biggest monetary impact. Median annual drug costs were € 13 059. Bulgarian CF patients showed low HRQOL results – 50 median VAS score and 0.592 median health utilities. A quarter of patients even rated their health state as worse than death.

Conclusion: CF patients from Eastern Europe remain a vulnerable population with risk factors for worse health outcomes. Our study provided a state-of-the art analysis that facilitates the elaboration, adoption and application of targeted public health policies to tackle CF-related problems at national and European level.

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The invisible contract: shifting care from the hospital to the home

The ageing population and associated burgeoning health care costs have resulted in a shift of care from institutional settings to home and communitybased care. As one example, rehabilitation-in-thehome (RITH) programs are becoming increasingly prevalent. These programs either substitute or supplement in-hospital treatment by providing multidisciplinary rehabilitation and support services in the client?s own home. This paper investigates the impact of RITH programs on informal carers. Semi-structured interviews carried out with caregivers and staff revealed a complex and contradictory interpretation of informal caring. Analysis of carers? interviews revealed: an assumption by themselves and others (including RITH staff) that they would provide care; the intimate, arduous and relentless work of caring; lack of consultation about discharge; lack of recognition and reimbursement; and low levels of program support for them as carers. Carers are integral to the successful rehabilitation of the client, but they occupy a marginal status within the program. An invisible contract consigns to them substantial care-work that was previously provided by the hospital. Informal carers in RITH programs can be seen as disenfranchised care contractors. This has implications for policy makers, program managers and researchers.

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Care by spouses, care by children : projections of informal care for older people in England to 2031

The future market costs of long-term care for older people will be affected by the extent of informal care. This paper reports on projections of receipt of informal care by disabled older people from their spouses and (adult) children to 2031 in England. The paper shows that, over the next 30 years, care by spouses is likely to increase substantially. However, if current patterns of care remain the same, care by children will also need to increase by nearly 60 per cent by 2031. It is not clear that the supply of care by children will rise to meet this demand. 

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Nightmare or needed strategy?

The authors draw on their experience as a counsellor and counselling service manager working for the Dementia Care Trust, an organisation that specialises in providing counselling for carers in their home space. They look at the perceived strengths and weaknesses of counselling in the home, including client commitment, client and counsellor safety and boundaries. They also highlight the benefits of working within the clients context and environment.

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Hurdles that impede economic evaluations of welfare interventions

Compared with economic evaluations of healthcare interventions, less experience has been gained in the field of economic evaluation of welfare interventions. This review suggests possible approaches to address four previously identified hurdles in economic evaluations of welfare interventions. After literature was searched through MEDLINE and EMBASE, it was found that Health-Related-Quality-of-Life questionnaires related to the condition of the target population are needed, instead of generic instruments. These condition-specific instruments use a multidimensional approach. There are specific instruments needed to take account of influences on informal caregivers. Moreover, it was shown that several aspects, such as crime rates and employment should be considered to estimate the impact on societal costs. Finally, the intervention must be described in detail and well defined to reduce variability. In conclusion, economic evaluations of welfare interventions increase complexity. These must be accounted for to permit valid assessments of the value for money of welfare interventions.

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Non-pharmacological approaches for dementia that informal carers might try or access: a systematic review

Objective: To review non-drug treatments for dementia; to provide a source of evidence for informal carers who want ideas about non-drug approaches for dementia, that they might try or that they could try to access. The systematic review addresses: what non-drug treatments work and what do they work for? What non-drug treatments might work and what for? What non-drug treatments do not work?

Methods: Literature searches of seven electronic databases (AMED, CINAHL, EMBASE, MEDLINE, PSYCINFO, Cochrane Library of Systematic Reviews and DARE) were carried out in November 2007 using the following search terms (or derivatives): dementia/Alzheimer's AND Review AND non-drug therapies and aimed at finding systematic reviews.

Results: Thirty-three reviews were identified; 25 were judged to be high or good quality. Studies within these systematic reviews were characterised by weak study designs with small sample numbers. Three interventions were found to be effective for use with particular symptoms of dementia: music or music therapy, hand massage or gentle touch and physical activity/exercise.

Conclusions: Whilst informal carers can apply some of the interventions highlighted in the home setting at little or no cost to themselves or to health or social care services, others are likely to require training or instruction. Service providers and commissioners should explore current and future provision of more structured group activities for people with dementia; in particular the provision of group music therapy and group exercise activities that meet the needs of both the person with dementia and their carer. Copyright © 2009 John Wiley & Sons, Ltd.

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Is cancer care dependent on informal carers?

Over the past half century, medical care has become less institutionalised, more autonomous, equitable and less costly. This has led to a shift from hospital-based delivery to community care. This paper examines the experiences of Canberra-based carers following this shift using interview data from a longitudinal qualitative study of 32 informal carers of a spouse with cancer. Cancer patients experienced poorly coordinated care. When carers observed the effects of errors and miscommunication on patients, they felt compelled to coordinate patient care. Interview data suggest that informal carers of cancer patients are relied upon to manage patient care at home and in hospitals, but are not supported in undertaking this responsibility. This implies that carers should be a far more central focus in cancer care reform strategies.

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Expectations and attitudes affecting patterns of informal care in farming families in Northern Ireland

Recent research in Northern Ireland examining the needs and circumstances of informal carers has highlighted the personal and financial costs of caring. In this paper it is argued that these studies have taken no account of the particular expectations and attitudes towards informal care that exist within farm families. In these families there is a strong expectation that care for older relatives will take place almost entirely within the family. The reputation of the farm family within the local community is strongly dependent on their treatment of the older generation. Help from the state and the voluntary sector is extremely limited. Rather than being described as burdensome and difficult, these family arrangements are described as beneficial for everyone involved. It Is argued that expectations and attitudes towards care within farm families are significantly different from those in non-farm families and policy makers and practitioners must take account of this in the context of care in the community.

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Social inclusion for the mental health of informal caregivers of Alzheimer disease's patients: The role of reemployment strategies of socially excluded

Alzheimer's disease (AD) is a one of the leading cause of dependency among older adults and of institutionalization in Europe. The number of people with AD is estimated in 10 million people and the cost of the disease has been recently estimated in 100.000 million of euros per year in the European Union (European Brain Council, 2011). There is nowadays no effective treatment of the disease. Currently, care of AD patients is primary sustained by informal caregivers who suffer burden as a result of their care responsibilities, and consequently are mainly affected by mental health problems (depression, anxiety, etc). This burden is also related with a premature institutionalization and violence against AD patients. In this sense, effective solutions are needed in order to fight against the mental health problems of informal caregivers. Regarding this, a social innovation research, funded by the Progress Programme of the DG of Employment, Social Affairs and Inclusion of the European Commission, is being developed currently in France and Spain, where the authors are aimed to demonstrate how a specialized formal training in AD addressed to people in risk of labour and social exclusion could improve the quality of life of AD patients and reduce the informal caregiver burden. The results of this research is specially relevant to help to reduce mental health problems of the informal carers of AD patients, but also in terms of intervene on the cognitive skills of the persons affected, as well as to allow the employment of socially excluded people.

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The cost of caring: how money worries are pushing carers to breaking point

Carers UK surveyed 4,282 carers between September 2010 and July 2011 to examine the financial pressures of caring, and these pressures have on carers' health. The sample included carers from the 4 nations of England, Wales, Scotland and Northern Ireland. This report presents the key findings. Carers identified the extra costs of caring, the need to cut back to save money, debt and worry due to financial hardship. The report lists a number of recommendations including a reform of carers' benefits, support to help carers juggle work and care, tackling fuel poverty and the funding of social care.

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Development of a position document for home care - wound care

Introduction and description of care: The management of non-healing wounds in Europe has gone through a dramatic shift in the location of service delivery from hospital towards home care settings. As a consequence more wounds with complex pathological pictures due to untreated patient co-morbidities are treated at home. There are no guidelines available covering the subject of home-care wound-management from a clinical perspective as well as no recommendations of minimal requirement of providing best care and supporting the empowerment of informal carers and patients with non-healing wounds in the home-care setting. Methods and aim: Based on literature reviews in combination with expert opinions from across sectors and areas of expertise a document was elaborated to give an overview of the main current approaches to the organisation of wound care within home-care settings, to identify possible barriers, challenges and opportunities for providing modern, cost-efficient, interdisciplinary wound care. The document has been developed in an intersectoral collaboration across European countries and organisations between the Tissue Viability Society (UK), Initiative Chronische Wunden (Germany), HomeCare Europe and EWMA. Thus, the focus is interdisciplinary and not tied to a specific health care system. Conclusion and discussion: Describing recommendations and raising a debate of how to manage non-healing wounds at home is of crucial importance for healthcare professionals, - providers, companies and policy makers as there is a tendency in home care of going towards employment of non-registered nurses. The document underlines the importance, scope, and level of the appropriate skills and gives recommendations for the interdisciplinary set-up required for wound care in the home-care setting.

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Cognitive stimulation therapy

Abstract: Have you heard of cognitive stimulation therapy? The London School of Economics (LSE) has carried out research that shows it to be more cost effective than usual care when looking at the cognitive and quality of life benefits for a dementia sufferer. There is also evidence to suggest that it might be more cost effective than dementia medication, say proponents of this relatively unknown therapy. Joanne Knowles is one such advocate who believes in this therapy so much that she voluntarily campaigns to spread its message.

In this article an advocate for cognitive stimulation therapy (CST), a psychosocial therapy program which is recommended by the National Institute for Clinical Health and Excellence (NICE) for people with mild to moderate dementia, describes the therapy and its use in a one-year pilot with Age Concern Horsham. The pilot programme offered ongoing CST combined with a carers' information course, with CST activity sessions for small groups designed to improve well-being and confidence and to allow participants to function at their maximum capability. The author explains that one of the groups was included in some University College London based research into the experience of attending CST for carers and cared for, and that the cost effectiveness of the programme was positively evaluated by the London School of Economics, and asserts that CST is a simple, evidence-based, cost-effective therapy for people with dementia.

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Economic Analysis of Formal Care, Informal Care, and Productivity Losses in Primary Care Patients who Screened Positive for Dementia in Germany

Background:The majority of people with dementia (PwD) live at home and require professional formal care and informal care that is generally provided by close relatives. Objective:To determine the utilization and costs of formal and informal care for PwD, indirect costs because of productivity losses of caregivers, and the associations between cost, socio-demographic and clinical variables. Methods:The analysis includes the data of 262 community-dwelling PwD and their caregivers. Socio-demographics, clinical variables, and the utilization of formal care were assessed within the baseline assessment. To evaluate informal care costs, the Resource Utilization in Dementia (RUD) questionnaire was used. Costs were calculated from a social perspective. Associations were evaluated using multiple linear and logistic regression models. Results:Formal care services were utilized less (26.3%) than informal care (85.1%), resulting in a cost ratio of one to ten(1,646 €; 16,473 €, respectively). In total, 29% of caregivers were employed, and every seventh (14.3%) experienced productivity losses, which corresponded to 1,258 € annually. Whereas increasing deficits in daily living activities were associated with higher formal and higher informal costs, living alone was significantly associated with higher formal care costs and the employment of a caregiver was associated with lower informal care costs. Conclusion:Informal care contributes the most to total care costs. Living alone is a major cost driver for formal costs because of the lower availability of potential informal care. The availability of informal care is limited and productivity losses are increased when a caregiver is employed.

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The burden of informal care for Alzheimer's Disease: carer perceptions from an empirical study in England, Italy and Sweden

Dementia of the Alzheimer type and related disorders greatly impact not only on the lives of sufferers but also on their unpaid informal carers, who usually are spouses or children. Carers are more likely to suffer from stress, take prescribed medication and visit their physicians compared with non-carers (Burns and Rabins, 2000). Social isolation that can occur in caregiving may mean that carers may only come to the attention of formal support services when a crisis occurs and informal care arrangements break down (Wenger, 1994). Increasing our understanding of the burden on informal care, and how this is affected by the use of support services, may contribute to the future development of services. As part of a European project (Sassi and McDaid, 1999), an empirical study was undertaken to measure aspects of the burden borne by informal carers of people with probable Alzheimer's disease living in the community in England, Italy and Sweden. Qualitative data on the caring experience and its economic impact were [...]

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Include impact on informal carers in economic evaluations

Economic evaluations of health interventions aim to support decision making in healthcare. To effectively do so, evaluations need to include all relevant costs and effects of an intervention. Informal care provided by family or friends is an important element of care for many patients, but can have a profound impact on the health and well-being of carers. Therefore, informal care should be considered in economic evaluations of health interventions. Different methods to do so exist. This paper provides an overview of state-of-the-art methods available for this purpose, illustrated with practical examples. Since the choice of measurement and valuation technique depends on the type and perspective of the economic evaluation, this paper supports researchers in choosing the appropriate techniques to include informal care in their economic evaluation of a health intervention. We discuss the different approaches to measuring and valuing informal care, covering both partial and full valuation methods, allowing inclusion as costs or effects.

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Socio-economic status differences in older people's use of informal and formal help: a comparison of four European countries

This study investigates the variations by older people's socio-economic status (SES) (i.e. educational level and social class) in the use of informal and formal help from outside the household in Great Britain, Italy, Belgium and The Netherlands. In all these countries, it was older people in low SES groups who mostly used such help. Multinomial logistic regression analyses showed that, in each country and for both types of help, there were SES gradients in the utilisation of both formal and informal care, and that differences in age, health and marital status largely accounted for the former but not the latter. Cross-national differences in the use of both informal and formal help remained when variations in sex, age, SES, health, marital status, home ownership and the use of privately-paid help were taken into account. Significant interaction effects were found, which indicated that older people in low SES groups in Great Britain and The Netherlands had higher odds of using informal help from outside the household than their counterparts in Italy, and similarly that those in The Netherlands were more likely to use formal help than their Italian peers. The results are discussed in relation to the cultural differences and variations in the availability of formal services among the countries.

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Autism spectrum disorder in adults: diagnosis and management

Clinical guideline which provides best practice advice on the care of adults with autism. The guidance covers the following key areas: general principles of care; identification and assessment; and interventions for autism, challenging behaviour, coexisting mental disorders. Assessment and interventions for families, partners and carers and organisation and delivery of care are also covered. Recommendations for future research include the need for more evidence on the clinical and cost effectiveness of: self-help for anxiety and depression, cognitive behavioural therapy for anxiety disorders and pharmacological treatments for depression in adults with autism. The full guideline, 'Autism: the NICE guideline on recognition, referral, diagnosis and management of adults on the autism spectrum' contains details of the methods and evidence used to develop the guideline.

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Supporting family caregivers at the end of life: they don't know what they don't know

Even for patients receiving complex, intensive medical care for serious and life-threatening illness, family caregiving is typically at the core of what sustains patients at the end of life. The amorphous relationship between physicians and the families of patients at the end of life presents both challenges and opportunities for which physicians may be unprepared. Families play important roles in the practical and emotional aspects of patient care and in decision making at the end of life. At the same time, family members may carry significant burdens as a result of their work. Through the perspectives of the wife, daughter, and home care nurse of a patient who died from pancreatic cancer, we illustrate the range of family caregiver experiences and suggest potentially helpful physician interventions. We describe 5 burdens of family caregiving (time and logistics, physical tasks, financial costs, emotional burdens and mental health risks, and physical health risks) and review the responsibilities of physicians to family caregivers. Based on available evidence, we identify 5 areas of opportunity for physicians to be of service to family members caring for patients at the end of life, including promoting excellent communication with family, encouraging appropriate advance care planning and decision making, supporting home care, demonstrating empathy for family emotions and relationships, and attending to family grief and bereavement. In caring well for family caregivers at the end of life, physicians may not only improve the experiences of patients and family but also find greater sustenance and meaning in their own work.

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Malnutrition and caring : the hidden cost for families

Key points from this report about malnutrition: • Malnutrition is a hidden issue in the community which needs to be urgently tackled • Families are under stress and struggling to care without the right advice and support • Malnutrition is largely preventable and treatable • Earlier intervention will help to improve the quality of life for individuals and reap substantial cost savings to health and social care.

Related facts: • More than 3 million people in the UK are either malnourished or at risk of malnutrition1 • 93% of those individuals live in their own homes or with their family

Our survey found: • 74% of carers prepare all the meals for the person they care for • 25% care for someone who is underweight • 60% of carers worry about the nutrition of the person they care for • 55% of the people being cared for use nutritional supplements • 16% were caring for someone who was underweight and with a small appetite and were worried about their diet yet were not having any nutritional support of any kind.

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Dads care too! Participation in paid employment and experiences of workplace flexibility for Australian fathers caring for children and young adults with disabilities

This study uses Australian survey data to explore whether caring for children and young people with disabilities affects paid employment participation of fathers who identify as the secondary caregiver. More fathers in the study were in full-time employment than those in the general Australian population, but they worked fewer hours, often in jobs they did not enjoy or roles with less responsibility. Over one third of fathers reported that caring had impacted on their job opportunities or career progression, particularly those whose children had more severe disabilities. The financial costs of raising a child with disabilities and their caring obligations informed many of the decisions fathers made in relation to employment. Fixed hours of work, lack of understanding from their employer, an income tied to hours worked and staff resources were cited as reasons why almost half of the fathers felt they were unable to access flexible working conditions to assist with their child’s care. Self-employment was seen by many fathers as desirable, but the perceived increase in flexibility may be accompanied by an increase in work hours. Implications for paternal well-being are discussed, along with the lifelong implications of caring on employment and financial security for families in the Australian context.

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Social capital in a lower socioeconomic palliative care population: a qualitative investigation of individual, community and civic networks and relations

Background: Lower socioeconomic populations live and die in contexts that render them vulnerable to poorer health and wellbeing. Contexts of care at the end of life are overwhelmingly determined by the capacity and nature of formal and informal networks and relations to support care. To date, studies exploring the nature of networks and relations of support in lower socioeconomic populations at the end of life are absent. This qualitative study sought to identify the nature of individual, community and civic networks and relations that defined the contexts of care for this group.

Methods: Semi-structured qualitative interviews were conducted with 16 patients and 6 informal carers who identified that they had social and economic needs and were from a lower socioeconomic area. A social capital questionnaire identifying individual, community and civic networks and relations formed the interview guide. Interviews were audio-taped, transcribed and analysed using framework analysis.

Results: Participants identified that individual and community networks and relations of support were mainly inadequate to meet care needs. Specifically, data revealed: (1) individual (informal caregivers) networks and relations were small and fragile due to the nature of conflict and crisis; (2) community trust and engagement was limited and shifted by illness and caregiving; (3) and formal care services were inconsistent and provided limited practical support. Some transitions in community relations for support were noted. Levels of civic and government engagement and support were overall positive and enabled access to welfare resources.

Conclusion: Networks and relations of support are essential for ensuring quality end of life care is achieved. Lower socioeconomic groups are at a distinct disadvantage where these networks and relations are limited, as they lack the resources necessary to augment these gaps. Understanding of the nature of assets and limitations, in networks and relations of support, is necessary to inform interventions to improve end of life care for lower socioeconomic populations.

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Quality of end-of-life care for non-cancer patients in a non-acute hospital

Aims and objectives.  Few surveys have been carried out documenting the quality of life for non-cancer patients in general district hospitals reaching the final trajectory towards death. We carried out a survey of 80 patients facing the final stages of their chronic illness as well as their carers and hospital staff.

Background.  With increasing life expectancy, a large majority of patients are older, where palliative care principles for patients with cancer are equally applicable. Few surveys have been carried out documenting the quality of life for non-cancer patients in general district hospitals reaching the final trajectory towards death in terms of patients’ and carers’ perspective, compared with the more extensive literature for patients with cancer.

Design.  Survey.

Methods.  Assessment tools include symptom check list, geriatric depression scale, Chinese Death Anxiety Inventory and the McGill Quality of Life Questionnaire for patients; SF-12 and the Chinese cost of care index for informal carers; and the Chinese Maslach Bumout and Death Anxiety Inventories for hospital staff.

Results.  Lower-limb weakness (92·5%), fatigue (86·2%), oedema (85%), dysphagia (58·2%) and pain (48·8%) were the most common symptoms in this group of patients. The mean Chinese Caregiver Stress Index score was 45·93 (SD 6·45) (maximum score = 80). For staff, the mean SF-12 physical component score was lower than the Hong Kong population average.

Conclusion.  The findings suggest that there is room for improvement in the quality of end-of-life care.

Relevance to clinical practice.  Patients in the final stages of many chronic illnesses have high prevalence of symptoms comparable to those of patients with cancer. Raising awareness and improving training for all health care professionals, formulating guidelines and care pathways and incorporating quality of care as key performance indicators are measures to improve the quality of end-of-life care.

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Supporting frail older people and their family carers at home using information and communication technology: cost analysis

AIM:This paper describes a cost analysis of a home-based support service for frail older people and their family carers in two municipalities in West Sweden and using information and communication technology.

BACKGROUND: A key challenge facing nurse managers across Europe is an increasingly aged population, combined with reduced numbers of young adults of working age. New solutions are needed to provide quality, cost-effective community care services to frail older people and their family carers.

METHODS: A case study methodology involving five families was used, and included a detailed cost description of the technology-based service compared with usual services. Cost data were collected in June 2002. This work formed part of a larger project exploring the impact of a technology-based service known as, Assisting Carers using Telematics Interventions to meet Older Persons' Needs (ACTION). In addition to cost data, information was gathered on the quality of life of frail older people and their family carers, and the job satisfaction and work methods of nurses and other practitioners based in the community. The cost analysis comprised a description of the family and their caring situation, the perceived benefits of the telematic based support service and an assessment of its impact on the use of other care services. These analyses were carried out with the help of needs assessors who were known to the families, and nurses working in the ACTION call centre. All results were validated by the five participating families.

RESULTS: Cost savings were achieved in all cases, and the benefits to older people and their carers were also considerable. As a result of the cost analysis and overall evaluation data, ACTION has been implemented as a mainstream service in the municipalities involved.

CONCLUSION: Researchers, nurses, other practitioners and community care managers can work together with frail older people and their family carers to develop quality, cost-effective support services that reduce demands on staff whilst providing benefits to users.

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Unpaid carers' access to and use of primary care services

General medical practitioners (GPs) and members of the primary care team have a pivotal role in supporting unpaid carers in their caring role and helping them to maintain their own health and well-being. This paper investigates the difference that caregiving makes to individuals’ access to and use of GP and primary care services. It is based on longitudinal analysis of carers’ contacts with GPs, and a review of the literature including evaluations of measures to improve primary-care-based support for carers. Men increase their consultation rates with GPs when taking on a caring role. In contrast, women who look after someone in the same household and carry heavy caring responsibilities have relatively less contact with GPs than expected. According to the literature, carers report a range of difficulties accessing primary health care. A five-fold typology is described covering barriers arising from: professional responses to the carers’ role; the way services are organized and delivered; language or culturally held beliefs and practices; carer or care recipient characteristics; and unmet information needs. Various measures to improve carers’ access to primary care have been introduced to overcome these barriers, but robust evidence of cost and utility is required to judge their acceptability and effectiveness for both carers and GPs. Although good practice guides, quality standards and evaluation tools are available to help improve primary care support for carers, further investigation of carers’ help-seeking for health care, and the factors involved, is required to underpin the prospects for developing a genuine partnership between unpaid carers and health professionals.

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Global action against dementia: G8 Dementia Summit declaration

The G8 Health Ministers met at the G8 Dementia Summit in London on 11 December 2013 to discuss how to shape an effective international response to dementia. They note the socio-economic impact of dementia globally, and therefore call for greater innovation to improve the quality of life for people with dementia and their carers, while reducing emotional and financial burden. They acknowledge the need to develop a co-ordinated international research action plan and for high-level fora in partnership with the OECD, WHO, the EU Joint Programme on Neurodegenerative Disease (JPND), and civil society. This declaration is signed by the G8 Health and Science Ministers (from the UK, Canada, France, Germany, Italy, Japan, Russia and the United States). They will meet again in the United States in February 2015 with other global experts, including WHO and OECD, to review the progress that has been made on their research agenda.

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"Value for money" in treating Alzheimer's disease with the new cholinesterase inhibitors

The absolute number of dementia cases is likely to increase due to the impending demographic changes. Several cost-of-illness studies of Alzheimer's disease, mainly from a societal perspective in developed countries, have demonstrated a huge economic burden. A substantial component of this huge economic burden is the direct costs of institutionalization and the indirect cost incurred by informal carers. This huge economic burden is of great interest because of the emergence of several cholinesterase inhibitors with proven efficacy in the treatment of Alzheimer's disease. Several cost-effectiveness studies of these drugs, based mainly on Markov modelling techniques and using data from population-based epidemiological studies and efficacy trials, have indicated that these drugs are cost-effective. A theoretical delay in placement into a residential or a nursing home and consequent cost savings may explain this cost-effectiveness. In the UK, although health authorities would fund the prescription of these drugs, social services would benefit from the cost savings; thus there is little financial incentive for health authorities to fund these drugs.

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Knowledge translation of research findings

Background: One of the most consistent findings from clinical and health services research is the failure to translate research into practice and policy. As a result of these evidence-practice and policy gaps, patients fail to benefit optimally from advances in healthcare and are exposed to unnecessary risks of iatrogenic harms, and healthcare systems are exposed to unnecessary expenditure resulting in significant opportunity costs. Over the last decade, there has been increasing international policy and research attention on how to reduce the evidence-practice and policy gap. In this paper, we summarise the current concepts and evidence to guide knowledge translation activities, defined as T2 research (the translation of new clinical knowledge into improved health). We structure the article around five key questions: what should be transferred; to whom should research knowledge be transferred; by whom should research knowledge be transferred; how should research knowledge be transferred; and, with what effect should research knowledge be transferred?

Discussion: We suggest that the basic unit of knowledge translation should usually be up-to-date systematic reviews or other syntheses of research findings. Knowledge translators need to identify the key messages for different target audiences and to fashion these in language and knowledge translation products that are easily assimilated by different audiences. The relative importance of knowledge translation to different target audiences will vary by the type of research and appropriate endpoints of knowledge translation may vary across different stakeholder groups. There are a large number of planned knowledge translation models, derived from different disciplinary, contextual (i.e., setting), and target audience viewpoints. Most of these suggest that planned knowledge translation for healthcare professionals and consumers is more likely to be successful if the choice of knowledge translation strategy is informed by an assessment of the likely barriers and facilitators. Although our evidence on the likely effectiveness of different strategies to overcome specific barriers remains incomplete, there is a range of informative systematic reviews of interventions aimed at healthcare professionals and consumers (i.e., patients, family members, and informal carers) and of factors important to research use by policy makers.

Summary: There is a substantial (if incomplete) evidence base to guide choice of knowledge translation activities targeting healthcare professionals and consumers. The evidence base on the effects of different knowledge translation approaches targeting healthcare policy makers and senior managers is much weaker but there are a profusion of innovative approaches that warrant further evaluation.

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Telecare in practice: a telecare initiative focusing on carers of older people based on ACTION

There is a continual need to support and assist carers who play a central role in providing informal care for a relative. This approach to care provision must have a strong foundation based on liaison between the family carers, professional carers and the older or disabled person who is the focus of care. Services that enable effective communication using videoconferencing, interactive communication, tailored Web based programs and other specific resources configured for the needs of the individual can help carers carry out their role effectively. The initiative described in this paper uses a combination of telematic focused interventions to meet the needs of carers and provides an in-depth overview of the ACTION telecare project.

The ACTION (Assisting Carers using Telematic Interventions to meet Older persons’ Needs) project was set up and funded because of the need to develop supportive methods for carers and older people. The initiative was designed to improve autonomy and maintain independence and quality of life for people in their own homes and therefore reduce the need for institutional care. This has an economic as well as a social dimension. The project has demonstrated that with the involvement of users at all levels it can fulfil this need. The role of the ACTION project was to develop a cost-effective telecare system for the provision of education, information and support and has been demonstrated with successful results.

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Statistics release: home care services; Scotland 2005

The purpose of this Statistics Release is to present the latest national figures for home care services provided or purchased by local authorities in Scotland. All local authorities in Scotland provide Home Care services which give people the support, practical help and personal care that they need to live as independently as possible in the community.

Original documentation on the Scottish Government website.

The employment costs of caregiving in Norway

Informal eldercare is an important pillar of modern welfare states and the ongoing demographic transition increases the demand for it while social trends reduce the supply. Substantial opportunity costs of informal eldercare in terms of forgone labor opportunities have been identified, yet the effects seem to differ substantially across states and there is a controversy on the effects in the Nordic welfare states. In this study, the effects of informal care on the probability of being employed, the number of hours worked, and wages in Norway are analyzed using data from the Life cOurse, Generation, and Gender survey. New and previously suggested instrumental variables are used to control for the potential endogeneity existing between informal care and employment-related outcomes. In total, being an informal caregiver in Norway is found to entail substantially less costs in terms of forgone formal employment opportunities than in non-Nordic welfare states.

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(Cost)-effectiveness of case-management by district nurses among primary informal caregivers of older adults with dementia symptoms and the older adults who receive informal care : design of a randomized controlled trial

Background: Dementia is an incurable disease with devastating consequences for both patients and their relatives. The objective of this study is to describe the study protocol of a randomized controlled trial with assignment to either usual care or case-management by district nurses, among informal caregivers of older adults with dementia symptoms who live at home and the older adults who receive informal care.

Methods/design: In this randomized controlled trial, effectiveness as well as cost-effectiveness of case-management is evaluated. It concerns case-management in early-detected patients with dementia symptoms and their primary informal caregivers. Participants are followed up to twelve months after baseline assessment. The main outcome measure of the effect evaluation is the caregiver's sense of competence to care for the older person with dementia symptoms. The economic evaluation is performed from a societal perspective.

Discussion: This is one of the first trials on case-management that includes an economic evaluation. In addition, it concerns a tailor-made intervention in early-detected patients with dementia symptoms and their caregivers. The results of this randomized controlled trial will provide valuable information for health professionals and policy makers on effectiveness and cost-effectiveness of early tailor-made case-management for patients and their informal caregivers. Moreover, positive effects will challenge current health care systems to move to more pro-active approaches for this group.

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Children caring for their “caregivers”: exploring the caring arrangements in households affected by AIDS in Western Kenya

Reflecting dominant understandings of childhood, many researchers describe orphans as an emotional and financial cost to the households in which they live. This has created a representation of orphans as a burden, not only to their fostering household, but also to society. This article seeks to challenge this representation by exploring children's contributions to their fostering households. Drawing on research from Bondo District in Kenya, this article brings together the views of 36 guardians and 69 orphaned children between the ages of 11 and 17, who articulated their circumstances through photography and drawing. Nearly 300 photos and drawings were selected by the children and subsequently described in writing. An additional 44 in-depth interviews and three focus group discussions were conducted to explore findings further. The data suggest that many fostering households benefit tremendously from absorbing orphaned children. All orphans were found to contribute to their fostering household's income and provide valuable care or support to ageing, ailing or young members of their households. The article concludes that caution should be exercised in using the term “caregiver” to describe foster parents due to the reciprocity, and indeed at times a reversal, of caring responsibilities.

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The effect of informal care on work and wages

Cross-sectional evidence in the United States finds that informal caregivers have less attachment to the labor force. The causal mechanism is unclear: do children who work less become informal caregivers, or are children who become caregivers working less? Using longitudinal data from the Health and Retirement Study, we identify the relationship between informal care and work in the United States, both on the intensive and extensive margins, and examine wage effects. We control for time-invariant individual heterogeneity; rule out or control for endogeneity; examine effects for men and women separately; and analyze heterogeneous effects by task and intensity. We find modest decreases—2.4 percentage points—in the likelihood of working for male caregivers providing personal care. Female chore caregivers, meanwhile, are more likely to be retired. For female care providers who remain working, we find evidence that they decrease work by 3–10 hours per week and face a 3 percent lower wage than non-caregivers. We find little effect of caregiving on working men's hours or wages. These estimates suggest that the opportunity costs to informal care providers are important to consider when making policy recommendations about the design and funding of public long-term care programs.

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Assessment of the burden of caregiving for patients with chronic obstructive pulmonary disease

Objective: To determine the effect of chronic obstructive pulmonary disease (COPD) on the quality of life of caregivers.

Design and methods: A cross-sectional study was carried out with forty-two COPD patients and their primary caregivers. Patients were assessed with the medical outcome survey short form (SF-36), the physical and mental component summary (PCS and MCS), Saint George's respiratory questionnaire (SGRQ), 6-min walking test, and spirometric and blood gas measurements. Caregivers were assessed using the medical outcome survey short form (SF-36), the physical and mental component summary (PCS and MCS), the 5-point Likert scale for measuring caregiver/patient relationships and the caregiver burden scale (CB scale).

Results: The majority of caregivers were female (85.3%), married (59%) and had low levels of income and schooling. The mean age was 51.6±16 years. Mean caregiver PCS and MCS scores were 45.9±10 and 46±12, while the mean total burden score was 1.79±0.6. The regression analysis showed caregiver/patient relationship quality, caregiver MCS scores and patient PCS scores to be important predictors of burden and explained 63% of the variance.

Conclusions: COPD causes a significant impact on the quality of life of caregivers. The two most important predictors of COPD burden are the relationship between caregivers and patients and caregiver MCS scores.

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Carer mentoring: A mixed methods investigation of a carer mentoring service

Background: Worldwide with ageing populations, the numbers of informal carers are likely to increase. Although being a carer is often satisfying, it can be challenging and require support. Volunteer-provided carer mentoring services where carers are supported by volunteer mentors are one such intervention. However, little is known about the impact of mentoring, carers’ experiences or the mechanisms by which these schemes may work. Previous quantitative findings have been inconsistent suggesting a different, mixed methods approach using qualitative and quantitative methods may be valuable.

Objectives: Objectives were to explore two main questions: whether mentoring had a significant positive effect on carer mentees in terms of mental health, quality of life and confidence in caring and to explore how carers experience and perceive the process and benefits of mentoring. In addition, the study aimed to suggest possible mechanisms to understand how mentoring may benefit carers.

Methods and setting: Mixed methods (quantitative questionnaires and depth interviews) investigated an established mentoring service provided by volunteer mentors. During the study period, 28 carers received mentoring. Of these, 25 carers completed structured questionnaires both before and after mentoring, to determine whether mentoring had an impact on carer wellbeing and confidence in caring. Depth interviews were also undertaken with 11 purposively sampled carers to explore how carers experience and perceive the process and benefits of mentoring.

Results: Statistically significant improvements in carer anxiety (p < 0.001), depression (p < 0.001), quality of life (p = 0.02) and confidence in caring (p < 0.05 on all dimensions except one) were found. Depth interviews revealed that carers were very positive about mentoring and highlighted many benefits. Findings suggested emotional support, information provision, problem solving facilitation and gaining new perspectives may be mechanisms by which mentoring achieves positive outcomes. Mentor personal characteristics, experiences and training are possible facilitators of the process.

Conclusions: Carer mentoring services can be a valuable form of carer support that falls somewhere between formal and informal support. Adopting mixed methods permitted greater understanding of how mentoring may benefit carers and has implications for mentor recruitment and training. The fact that mentoring can be provided by volunteer mentors makes it an attractive, potentially cost-effective means of supporting carers.

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Is cost effectiveness sustained after weekend inpatient rehabilitation? 12 month follow up from a randomized controlled trial

Background: Our previous work showed that providing additional rehabilitation on a Saturday was cost effective in the short term from the perspective of the health service provider. This study aimed to evaluate if providing additional rehabilitation on a Saturday was cost effective at 12 months, from a health system perspective inclusive of private costs.

Methods: Cost effectiveness analyses alongside a single-blinded randomized controlled trial with 12 months follow up inclusive of informal care. Participants were adults admitted to two publicly funded inpatient rehabilitation facilities. The control group received usual care rehabilitation services from Monday to Friday and the intervention group received usual care plus additional Saturday rehabilitation. Incremental cost effectiveness ratios were reported as cost per quality adjusted life year (QALY) gained and for a minimal clinical important difference (MCID) in functional independence.

Results: A total of 996 patients [mean age 74 years (SD 13)] were randomly assigned to the intervention (n = 496) or control group (n = 500). The intervention was associated with improvements in QALY and MCID in function, as well as a non-significant reduction in cost from admission to 12 months (mean difference (MD) AUD$6,325; 95% CI −4,081 to 16,730; t test p = 0.23 and MWU p = 0.06), and a significant reduction in cost from admission to 6 months (MD AUD$6,445; 95% CI 3,368 to 9,522; t test p = 0.04 and MWU p = 0.01). There is a high degree of certainty that providing additional rehabilitation services on Saturday is cost effective. Sensitivity analyses varying the cost of informal carers and self-reported health service utilization, favored the intervention.

Conclusions: From a health system perspective inclusive of private costs the provision of additional Saturday rehabilitation for inpatients is likely to have sustained cost savings per QALY gained and for a MCID in functional independence, for the inpatient stay and 12 months following discharge, without a cost shift into the community.

Trial registration: Australian and New Zealand Clinical Trials Registry November 2009 ACTRN12609000973213.

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Quality of life and burden in caregivers for patients with Parkinson's disease: concepts, assessment and related factors

Caregivers of Parkinson's disease patients face responsibilities stemming from providing assistance to a person, usually a family member, who suffers a progressively disabling disease characterized by both motor and nonmotor symptoms. These circumstances impact on the physical, emotional and psychosocial aspects of the caregivers'lives and, therefore, on their quality of life (QoL). Studies have identified factors related to caregivers'global QoL and health-related QoL, causing caregivers distress and affecting their QoL. These factors are related to patients'and caregivers'characteristics and may be classified as sociodemographic, psychological and disease related. Caregiver's burden refers to the multiplicity of difficulties ensuing as a consequence of caring, including, for example, health problems, modification of habits, economic loss and QoL deterioration. Therefore, burden-related factors are also briefly reviewed. The implementation of effective interventions to preserve the caregiver’s wellbeing and allow the patients to remain at home and be properly assisted is a pragmatic consequence of this knowledge.

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Informal caregivers' experiences of formal support in a changing context

As the location of long-term care of elderly people moves to homes and communities, and responsibility for care shifts to families, understanding the experience of people in this situation is necessary to ensure that support is appropriate, accessible and effective. The present paper explores informal caregivers’ and recipients’ relationships with formal support, drawing on thematic and narrative analysis of 30 in-depth interviews with self-identified family caregivers conducted over a year in a mid-size city in Ontario, Canada. All but six of these caregivers had had some interaction with formal support. The semistructured interviews explored caregivers’ knowledge about, and perceptions and experiences of accessing and using formal support. Interpretation reveals how confusion and lack of knowledge about services, the inflexibility and lack of availability of services, and increasing pressure on the quantity and quality of publicly funded community-based resources combine to impact negatively on the experience of accessing and using formal support. Different ideas about the relative roles and responsibilities of seniors, informal caregivers and ‘family’ in general, and the state both shape and are shaped by policies and the situated realities of the provision of formal support. Providing care at home creates both opportunities and constraints for caregivers in their interactions with formal support. Lastly, this paper highlights the difficulties of interacting with publicly funded formal support as the costs of care are moved away from the state and onto families and individuals.

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Work Productivity and Health of Informal Caregivers of Persons With Advanced Cancer

The purpose of this study was to describe health promotion behaviors and work productivity loss in informal caregivers of individuals with advanced stage cancer. Using a cross-sectional, correlational design, 70 caregivers completed measures of health behaviors, mood, social support, and burden. Absenteeism and presenteeism were evaluated in employed caregivers (n = 40). Caregivers reported low levels of physical activity. The mean percentage of work productivity loss due to caregiving was 22.9%. Greater work productivity loss was associated with greater number of caregiving hours, higher cancer stage, married status, and greater anxiety, depression, and burden related to financial problems, disrupted schedule, and health. Nurses should assess caregivers and provide health promotion interventions, which may ultimately reduce the economic impact of caregiving. [Copyright John Wiley and Sons, Ltd.]

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Adults with Incapacity (Scotland) Act 2000: guardianship and intervention orders - making an application: a guide for carers

A guide for carers who are concerned that the person they care for is unable to take action or make some or all decisions in relation to their finances, personal welfare or health, due to a mental disability or severe communications difficulties, such as a stroke. It provides information on how the Adults with Incapacity (Scotland) Act 2000 can help, the purpose of guardianship and intervention orders, considerations to make before taking forward an application for a guardianship or intervention order, deciding what powers to apply for, how to make an application, procedures and costs, what to do next when you have been appointed, and frequently asked questions.

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The effect of free personal care for the elderly on informal caregiving

Population forecasters have predicted that the proportion of people in the UK aged 65 years and older will rise significantly in coming decades. This shift in demographics will put increasing pressure on the National Health Service and providers of social care. However, older people do not rely only on care provided by the state; informal care of the elderly is often supplied by family and friends. Therefore, the relationship between formal and informal care and the reaction of informal carers to institutional changes is an important policy issue. This study uses individual level data from the British Household Panel Survey to estimate the effects of the introduction of free personal care for the elderly in Scotland on informal care behaviour. As the change in policy applied only to Scotland, a natural experiment is formed allowing a difference-in-differences approach to be used. This paper finds that the introduction of the policy increased the probability of women supplying informal care by around six percentage points. In addition, for both sexes, it reports evidence of a shift away from the upper and lower tails towards the middle of the hours of care distribution as a result of the change in policy. Copyright © 2015 John Wiley & Sons, Ltd.

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Social problem-solving telephone partnerships with family caregivers of persons with stroke

As individuals with significant functional deficits are discharged earlier from the hospital, health care professionals are challenged to develop cost-effective intervention programmes that will assist family members to manage caregiving problems in the home. The literature suggests that social problem-solving can positively influence the physical and psychological well-being of individuals. This paper describes a social problem-solving training procedure provided primarily by telephone to assist family caregivers to manage caregiving issues in the home. (C) 2001 Lippincott Williams & Wilkins.

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Health-related quality of life and attitudes to long-term care among carers of older people using social services

Family carers provide more care than the combined efforts of the NHS and social services departments, and their value to the economy is estimated to be around £34 billion a year (Hirst, 1999). However, many carers have health problems of their own. Using three standardised measures to screen for activity limitation (ADLs), depression (GHQ-28) and health related quality of life (HRQoL) (SF36), a study of carers of people aged 75 and over referred consecutively to social services departments in adjacent inner city areas showed a high prevalence of limitations in activities of daily living (ADLs), that a substantial proportion (42 per cent) had GHQ-28 scores high enough to suggest depression and their scores on the SF-36 showed that many carers were low in vitality and tired. Co-resident carers had poorer psychological health and more difficulties with social functioning than non-resident carers, and were older, but were not significantly different in self-reported physical health. Whether carers wanted the cared-for person to remain at home for as long as possible depended on their relationship (spouse or not) and whether the older person was depressed. The carer’s own psychological health was not related to their attitude to institutional care. The study suggests that targeting social care resources on carers showing psychological distress may not reduce downstream expenditure on long-term care.

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Family care: a conceptual clarification: challenges for future health policy and practice

The healthcare problems of individuals are often solved without the intervention of professionals through family caregiving. Population ageing, a shortage of professionals and cost-control in the healthcare sector1, increase the importance of family caregiving in most west-European countries, where comparative research has shown that national governments no longer take full responsibility for care services.2 The involvement of family caregivers, however, is not without problems. Family caregivers can experience problems while providing care and while realising their need to fully participate in society.3,4 One cause of those problems involves the different conceptions of ‘family care’ that are in use, which has meant that the position of family care compared with other types of care is not clear. Moreover, the plurality of definitions of family care is not beneficial for fine-tuning between policy and practice. For the healthcare sector to function properly, such fine-tuning is indispensable. 

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Informal carers of mentally infirm elderly in Lancashire

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.

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Free Personal Care for Older People in Scotland: Issues and Implications

Drawing on recent quantitative and qualitative research, we consider lessons of the Scottish policy of free personal care for older people. The policy is embedded in political debates about devolution and interacts with various changing policies on care and support for older people. Evaluation is complicated by these interactions and by gaps in relevant data, especially concerning costs. Operationally, policy implementation has presented varying difficulties for local authorities. For clients and informal carers it remains popular, but is part of a service-led model of provision which does not reflect their own views of their care and support needs. Adapted from the source document.

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A telehealth behavioral coaching intervention for neurocognitive disorder family carers

Objectives: This study examined the differential impact of two telehealth programs for women caring for an older adult with a neurocognitive disorder. Outcomes examined were depressive symptoms, upset following disruptive behaviors, anxious and angry mood states, and caregiving self-efficacy.

Methods: Women cohabitating with a family member diagnosed with a neurocognitive disorder were assigned via random allocation to either of the following: (1) a 14-week behavioral intervention using video instructional materials, workbook and telephone coaching in behavioral management, pleasant events scheduling, and relaxation or (2) a basic education guide and telephone support comparison condition. Telephone assessments were conducted by interviewers blind to treatment condition at pre-intervention, post-intervention, and 6 months following intervention.

Results: For those providing in-home care at post-treatment, depressive symptoms, upset following disruptive behaviors, and negative mood states were statistically lower in the behavioral coaching condition than in the basic education and support condition. Reliable change index analyses for Beck Depression Inventory II scores favored the behavioral coaching condition. Caregiving self-efficacy scores for obtaining respite and for managing patient behavioral disturbances were significantly higher in the coaching condition. Effect sizes were moderate but not maintained at the 6-month follow-up.

Conclusions: This study provides some initial evidence for the efficacy of a telehealth behavioral coaching intervention compared with basic education and telephone support. Carers' abilities to maintain strategy use during progressive disorders such as Alzheimer's disease likely require longer intervention contact than provided in the current study. Dementia carers, including those living in rural areas, can benefit from accessible and empirically supported interventions that can be easily disseminated across distances at modest cost. © 2015 The Authors. International Journal of Geriatric Psychiatry Published by John Wiley & Sons, Ltd.

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Estimating the costs of informal care for people with Alzheimer's disease: methodological and practical challenges

In Alzheimer's disease and related disorders estimates of informal care costs have been neglected and when included in cost of illness studies, valuations have been highly variable. This illustrates the need to standardise the methodology not only for valuing formal, but also informal care costs. Methods used for valuing informal care are identified, together with theoretical and practical challenges in measurement. In particular the measurement of time and it's associated satisfaction or utility is complex and valuations of time need to consider aspects of the caregiving experience which influence the marginal valuation of the time spent caring. Argues that more empirical work is required to elicit information on both the positive and negative satisfaction associated with caregiving and to incorporate this into valuations of the costs related to informal care.

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Stroke: the increasing complexity of carer needs

In Australia, more than 346,000 individuals who experience a stroke return to living in their homes with varying degrees of disability. They rely on emotional and physical support from informal carers, typically family members. Informal carers have an indispensable role in patient care poststroke, and the ability of carers to manage this role effectively is crucial for stroke survivors to be able to return home. The aim of this study was to examine the impact of the caring role on carers of stroke survivors, particularly the services provided and the levels of depression and well-being experienced. The study used a longitudinal design incorporating survey methods. Stroke survivors were assessed for functional ability, quality of life, and depression using three assessment tools: the Stroke Impact Scale, World Health Organization Quality of Life-BREF scale, and Zung Self-Rating Depression Scale. A total of 26 people were surveyed: 13 stroke survivors and their 13 carers. Carer knowledge of stroke support services was also explored. Information was collected by using survey methods and structured interviews at 3 weeks and at 3 months postdischarge. The main finding was that depression scores for carers and stroke survivors were below Australian norms at both assessment time points. The major concern identified by carers was poor follow-up procedures for initiating rehabilitation in the home. This study highlighted that a lack of appropriate discharge planning, in conjunction with early discharge of stroke survivors, can have an impact on the rehabilitation process and place increased and unrealistic demands on carers.

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Telecare for Diabetes, CHF or COPD: Effect on Quality of Life, Hospital Use and Costs. A Randomised Controlled Trial and Qualitative Evaluation

Objectives: To assess the effect of telecare on health related quality of life, self-care, hospital use, costs and the experiences of patients, informal carers and health care professionals.

Methods: Patients were randomly assigned either to usual care or to additionally entering their data into a commercially-available electronic device that uploaded data once a day to a nurse-led monitoring station. Patients had congestive heart failure (Site A), chronic obstructive pulmonary disease (Site B), or any long-term condition, mostly diabetes (Site C). Site C contributed only intervention patients – they considered a usual care option to be unethical. The study took place in New Zealand between September 2010 and February 2012, and lasted 3 to 6 months for each patient. The primary outcome was health-related quality of life (SF36). Data on experiences were collected by individual and group interviews and by questionnaire.

Results: There were 171 patients (98 intervention, 73 control). Quality of life, self-efficacy and disease-specific measures did not change significantly, while anxiety and depression both decreased significantly with the intervention. Hospital admissions, days in hospital, emergency department visits, outpatient visits and costs did not differ significantly between the groups. Patients at all sites were universally positive. Many felt safer and more cared-for, and said that they and their family had learned more about managing their condition. Staff could all see potential benefits of telecare, and, after some initial technical problems, many staff felt that telecare enabled them to effectively monitor more patients.

Conclusions: Strongly positive patient and staff experiences and attitudes complement and contrast with small or non-significant quantitative changes. Telecare led to patients and families taking a more active role in self-management. It is likely that subgroups of patients benefitted in ways that were not measured or visible within the quantitative data, especially feelings of safety and being cared-for.

Trial Registration: Australian New Zealand Clinical Trials Registry ACTRN12610000269033

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Non-motor symptoms of Parkinson's disease: diagnosis and management

Non-motor symptoms (NMS) of Parkinson's disease (PD) are a key determinant of health, quality of life (QoL) and societal cost of PD. They are often less appreciated than motor symptoms but are important sources of disability for manyPDpatients. Literature search was performed using the reference databases Medline, Science Citation Index and EMBASE. The keywords used were 'non-motor symptoms', Parkinson's disease, olfaction and constipation. Papers discovered by this search were reviewed, as were references cited therein. Contrary to common perception, many NMS of PD occur early in PD and some may even predate the diagnosis of PD that is based on motor signs. These include olfactory deficit, sleep problems such as rapid eye movement behaviour disorder, constipation and the more recently described male erectile dysfunction. There is compelling evidence that nonmotor symptoms of PD play a dominant role in the QoL and disability of PD patients and the QoLof their 'informal' carers. Effective clinical management of PD therefore demands that these symptoms be identified and to the extent possible treated.

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Who cares? A profile of people who care for relatives with a mental disorder

Objective: To profile the Australian adults who are caring for a relative with a mental disorder.

Method: Data came from the 2007 National Survey of Mental Health and Wellbeing 2007 (NSMHWB), a nationally representative household survey of 8841 individuals aged between 16 and 85 years.

Results: Many people act as carers: 15% of the Australian adult population, or nearly 2.4 million individuals. The strongest predictors of being a carer are being female and being in a relatively older age bracket. Carers provide a range of emotional and practical supports to close relatives with a range of mental disorders, most notably high prevalence disorders. Their relatives’ health problems cause them considerable worry, anxiety and depression, and their caring role can be associated with high financial costs.

Conclusions: Carers are significant stakeholders in the mental health system. Providing support for carers is crucial, particularly because their own mental health and well-being may be affected by their care-giving role. The nature of this support should take into account their large numbers, their profile and the role they perform.

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Variant Creutzfeldt-Jakob disease: cost borne by families

This study aims to: estimate the costs borne by families caring for patients with variant Creutzfeldt-Jakob disease (vCJD); to contextualise results to recent initiative; and consider the methodological problems of estimating costs of care. Semi-structured interviews and a follow-up postal questionnaire, eliciting costs to families both before and after the patient's death, were carried out participants included 19 families of patients with vCJD. Cost profiles were constructed, detailing key time and financial costs associated with their relative's illness and death accursing to families. Main outcome measures included total, median and ranges of relevant cost elements. Sensitivity analyses, comparing high and low cost estimates, were undertaken. Concludes that the National Carers Strategy does not consider fully the needs of some groups of carers or the full range or magnitude of potential costs to families associated with caring.

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Transitions at the end of life for older adults: patient, carer and professional perspectives : a mixed-methods study

Background: The end of life may be a time of high service utilisation for older adults. Transitions between care settings occur frequently, but may produce little improvement in symptom control or quality of life for patients. Ensuring that patients experience co-ordinated care, and moves occur because of individual needs rather than system imperatives, is crucial to patients’ well-being and to containing health-care costs.

Objective: The aim of this study was to understand the experiences, influences and consequences of transitions between settings for older adults at the end of life. Three conditions were the focus of study, chosen to represent differing disease trajectories.

Setting: England.

Participants: Thirty patients aged over 75 years, in their last year of life, diagnosed with heart failure, lung cancer and stroke; 118 caregivers of decedents aged 66–98 years, who had died with heart failure, lung cancer, stroke, chronic obstructive pulmonary disease or selected other cancers; and 43 providers and commissioners of services in primary care, hospital, hospice, social care and ambulance services.

Design and methods: This was a mixed-methods study, composed of four parts: (1) in-depth interviews with older adults; (2) qualitative interviews and structured questionnaire with bereaved carers of older adult decedents; (3) telephone interviews with care commissioners and providers using case scenarios derived from the interviews with carers; and (4) analysis of linked Hospital Episode Statistics (HES) and mortality data relating to hospital admissions for heart failure and lung cancer in England 2001–10.

Results: Transitions between care settings in the last year of life were a common component of end-of-life care across all the data sets that made up this study, and many moves were made shortly before death. Patients’ and carers’ experiences of transitions were of a disjointed system in which organisational processes were prioritised over individual needs. In many cases, the family carer was the co-ordinator and provider of care at home, excluded from participation in institutional care but lacking the information and support to extend their role with confidence. The general practitioner (GP) was a valued, central figure in end-of-life care across settings, though other disciplines were critical of GPs’ expertise and adherence to guidelines. Out-of-hours services and care homes were identified by many as contributors to unnecessary transitions. Good relationships and communication between professionals in different settings and sectors was recognised by families as one of the most important influences on transitions but this was rarely acknowledged by staff.

Conclusions: Development of a shared understanding of professional and carer roles in end-of-life transitions may be one of the most effective ways of improving patients’ experiences. Patients and carers manage many aspects of end-of-life care for themselves. Identifying ways to extend their skills and strengthen their voices, particularly in hospital settings, would be welcomed and may reduce unnecessary end-of-life transitions. Why the experiences of carers appear to have changed little, despite the implementation of a range of relevant policies, is an important question that has not been answered. Recommendations for future research include the relationship between policy interventions and the experiences of end-of-life carers; identification of ways to harmonise understanding of the carers’ role and strengthen their voice, particularly in hospital settings; identification of ways to reduce the influence of interprofessional tensions in end-of-life care; and development of interventions to enhance patients’ experiences across transitions.

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A Comparison of the Lifetime Economic Prospects of Women Informal Carers and Non-carers, Australia, 2007

Informal care provided at home to family members with a disability is a major part of the disability and aged care system in Australia. Using data from the 2007 Household Income and Labour Dynamics in Australia survey, this study provides an updated comparison of the financial wellbeing, or lack thereof, over the working life of women primary carers and non-carers. This study focuses on selected groups of primary carers and non-carers disaggregated by partnership status, level of education and self-assessed health status. While women primary carers tend to be more financially disadvantaged than non-carers, having a post-school education and being in good health contribute positively to bridge the gaps.

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Methodological issues in the design and conduct of public health computer assisted telephone interview surveys: the case of informal carers in Australia

The academic literature contains surprisingly little information regarding the design and conduct of surveys dealing with sensitive social issues. The present paper is an attempt to help fill that gap so that other researchers conducting similar projects can learn from our experience. In particular, I focus on the various challenges we encountered in carrying out a computer assisted telephone interview (CATI) survey of informal carers in Australia, our responses to these challenges and our learnings from this endeavour. In the present article, I discuss the following issues: cost-efficient sampling for small numbers; opt-out versus opt-in approaches to respondent participation; status errors in administrative data; reducing respondent refusals; interviewing non-English speakers; questionnaire topic order; carers who care for more than one person; and interviewer training, including interviewer and/or respondent distress. The conclusions were: (1) carers are generally willing and able to answer quite sensitive questions around caring, despite the fact that they may become distressed in doing so; (2) carers are willing to answer a rather long (25 min) telephone survey; (3) thorough interviewer training is critically important, with an emphasis on achieving a balance between sensitivity and efficiency; and (4) respondents should be given the opportunity at the end of the interview to make additional comments and to provide their contact details should they desire follow up from an appropriate authority.

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'Ageing-in-place': Frontline experiences of intergenerational family carers of people with dementia

The success of 'ageing-in-place' aged care policy in Australia relies heavily on the unpaid work of informal carers. While there is a wealth of research regarding informal carers more generally, we know relatively little about the experiences of the 'sandwich generation': Adult children (mainly daughters) who provide care for a parent while often juggling paid work and the care of their own children or grandchildren. In this paper I undertake a critical analysis of 'ageing-in-place' policy through the lens of 'sandwich generation' carers of people with dementia. Drawing from a composite case study, I argue that these carers are located at the interstices of powerful discourses such as 'individualisation' and 'care' and explore how the everyday practice of care is negotiated within these spaces. Inhabiting these spaces can be costly for carers and we need to consider how policies can better support intergenerational carers if 'ageing-in-place' is to be sustainable.

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Children and young people as active agents in care-giving: Agency and constraint

This paper envisions children and young people who provide informal care to family members with illness or disability as active agents within the care relationship, whilst emphasising that this agency operates within constraints. These constraints include familial and kinship obligations, socio-economic and demographic circumstances and policy and service constraints. This paper examines the costs incurred and benefits conferred by young people who provide care. It presents the findings from an analysis of Australian national data on young people who provide informal care. It also presents some findings from focus groups conducted with young people involved in informal care-giving. The paper concludes with a discussion of the policy implications of the research. [Copyright Elsevier B.V.]

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Nurses' experience of delivering a supportive intervention for family members of patients with lung cancer

Families contribute to maintaining the well-being of people with cancer through providing emotional and practical support, frequently at significant cost to their own well-being, and often with little help from healthcare professionals. This paper describes nurses' experience of providing an innovative service to support the families of people with lung cancer. A process of group reflection by the three nurses involved in delivering the intervention has produced an autoethnographic account of taking part in this study. Three main themes relating to the nature and process of delivering the intervention were identified: ‘meeting diverse need’, ‘differing models of delivery’ and ‘dilemma and emotion’. Supporting family members of patients with lung cancer can be immensely rewarding for nurses and potentially bring significant benefit. However, this kind of work can also be demanding in terms of time and emotional cost. These findings demonstrate the value of incorporating process evaluation in feasibility studies for articulating, refining and developing complex interventions. Determining the applicability and utility of the intervention for other practice settings requires further evaluation.

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Exploring Social Care: Applying a New Construct to Young Carers and Grandparent Carers

Mainstream literature on paid care for children, frail elderly people and people with chronic illness or disability, and unpaid care provided usually by family members within households and kin networks tends to establish dichotomies: formal/informal, commodified/non-commodified. Recent feminist literature rejects these dichotomies, developing models of social care in which the interconnections of paid and unpaid care are mapped within policy frameworks. This paper uses theoretical frameworks of ‘social care‘: care as labour; care as a relationship embedded in obligation; care incurring a range of costs; to explore two case-studies: young carers aged up to 24 years who are most often caring for a co-resident parent; and grandparents who are the primary carers of their grandchildren. The latter may occur under the aegis of child protection authorities, or Family Court orders, or in informal arrangements, not licensed by state authorities. This analysis of the international literature and Australian research data affirms the power of the social care framework, and also shows the influence of social policy settings on informal care provision.

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Good days and bad days: the lived experience and perceived impact of treatment with cholinesterase inhibitors for Alzheimer's disease in the United Kingdom

Although heralded as a major breakthrough in the treatment of Alzheimer’s disease the experience and impact of using cholinesterase inhibitors (CHEIs) from the perspective of people with Alzheimer’s disease has not been widely reported. This qualitative study reports the lived experience of CHEI users and the perceived impact of the treatment. The views and experiences of 12 older people referred for memory problems or receiving treatment and 11 associated family carers were obtained using a combination of semi-structured interviews and focus groups. A key theme that emerged from the qualitative analysis was the belief that any new treatment ‘is worth a try’. For some participants the benefits of using CHEIs were ‘difficult to say’. Others reported seeing ‘a difference’, ‘getting no worse’ or no improvement in their symptoms. The study highlights the importance of listening to the voices of people with dementia and their family carers in the management of pharmaceutical treatments and the need to involve (potential) treatment users in defining quality-of-life outcomes in cost-effectiveness studies.

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Dementia risk reduction: it's never too early, it's never too late

There are 850,000 people living with dementia in the United Kingdom today, and there is currently no diseasemodifying intervention available for any form of the condition. Costs from dementia to the UK economy are currently estimated to be over L24 billion a year and approximately 700,000 people are informal carers for people who have dementia. While age is the biggest risk factor for developing dementia, the condition is not an inevitable part of ageing. Other factors such as medical history, lifestyle and genetics may also contribute to the risk of developing dementia. A recent analysis of the research on protective and modifiable factors for dementia concluded that there is strong evidence to show that stroke, midlife high blood pressure and diabetes increase the likelihood of developing dementia. In many cases, risk of these conditions can be minimised through lifestyle choices - cutting out smoking, eating a healthy diet with low alcohol consumption, keeping physically active and maintaining a healthy weight. [...]

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Direct health-related costs of severely mentally ill patients and their informal carers in community care

OBJECTIVE: Within the last few years, a small number of German cost analyses of patients treated in community mental health care settings was presented. None of these studies, however, examined direct health care costs of the patients' close reference persons focusing on costs associated with providing informal care. Therefore, our study aimed to analyse health-related direct costs of severely ill patients suffering from affective or schizophrenic disorders, and of their informal carers during community mental health care; further, we examined if these costs differed between the diagnostic groups.

METHODS: 69 patients currently treated by community mental health services of the Dresden region and their closest reference person providing informal care were assessed twice within an interval of 3 months by use of the CSSRI- D. Thus, direct health care costs of patients and their informal carers covering a 6-months-period could be calculated.

RESULTS: 25.35% and 38.24%, respectively, of the closest reference persons' direct health care costs were caused by the situation of acting as informal carer. This was 9.12% and 22.74%, respectively, of the patients' direct health care costs assessed at the same time-points. Patients' costs did not differ between the diagnostic categories, but were influenced by the current severity of psychopathological symptoms. Reference persons' costs were influenced by the severity of the patient's psychopathological symptoms, but also by the social control behaviour of the reference persons themselves as well as by their sense of coherence.

CONCLUSIONS: While a replication of our findings is urgently needed, they point at the economic significance of direct health-related costs caused by acting as informal carers. Further, therapeutic approaches adequate for minimizing these costs could be suggested, like emphasizing protective factors of mental well-being in psycho-educational programmes for relatives.

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Guardianship and intervention orders - making an application: a guide for carers

A guide for carers who are concerned that the person they care for is unable to take action or make some or all decisions in relation to their finances, personal welfare or health, due to a mental disability or severe communications difficulties, such as a stroke. The guide covers information on how the Adults with Incapacity (Scotland) Act 2000 can help. It also explains the purpose of guardianship and intervention orders and outlines the considerations to make before taking forward an application for a guardianship or intervention order. The guide also describes how to make an application, the costs involved and what the carer should do once appointed.

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Dementia care costs and outcomes: a systematic review

Objective: We reviewed evidence on the cost-effectiveness of prevention, care and treatment strategies in relation to dementia.

Methods: We performed a systematic review of available literature on economic evaluations of dementia care, searching key databases and websites in medicine, social care and economics. Literature reviews were privileged, and other study designs were included only to fill gaps in the evidence base. Narrative analysis was used to synthesise the results.

Results: We identified 56 literature reviews and 29 single studies offering economic evidence on dementia care. There is more cost-effectiveness evidence on pharmacological therapies than other interventions. Acetylcholinesterase inhibitors for mild-to-moderate disease and memantine for moderate-to-severe disease were found to be cost-effective. Regarding non-pharmacological treatments, cognitive stimulation therapy, tailored activity programme and occupational therapy were found to be more cost-effective than usual care. There was some evidence to suggest that respite care in day settings and psychosocial interventions for carers could be cost-effective. Coordinated care management and personal budgets held by carers have also demonstrated cost-effectiveness in some studies.

Conclusion: Five barriers to achieving better value for money in dementia care were identified: the scarcity and low methodological quality of available studies, the difficulty of generalising from available evidence, the narrowness of cost measures, a reluctance to implement evidence and the poor coordination of health and social care provision and financing. Copyright © 2012 John Wiley & Sons, Ltd.

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Respite care and short breaks: what works and at what cost?

It is important to find out which services benefit people with dementia and their carers most: in particular whether carers gain more support from respite care and short breaks or from other services. Hilary Arksey and Helen Weatherly review the research evidence to date and comment on its limitations, given the wide range of different services covered.

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The last three months of life of Italian cancer patients. Methods, sample characteristics and response rate of the Italian Survey of the Dying of Cancer (ISDOC)

Study objective: The Italian Survey of the Dying of Cancer (ISDOC) was undertaken to evaluate the experiences of Italian people dying from cancer during their last three months of life in all settings of care. Study design: A two-stage probability sample was used to estimate end-of-life outcomes of about 160 000 Italian cancer deaths. In the first stage, 30 of the 197 Italian Local Health Districts (LHD) were randomly selected after stratification. In the second stage, a fixed proportion of cancer deaths was randomly drawn from each LHD, and 2000 death certificates of patients who died of cancer were identified. The non-professional caregivers were identified and interviewed using a semi-structured questionnaire derived from the Views of Informal Carers - Evaluation of Services (VOICES). Results: Caregivers were successfully identified for 95% of the sample (n = 1900). The caregiver was the child (42.7%), the spouse (36.5%), another family member (17.3%), or a friend (1.5%). Only 3% of the sample had no non-professional support. An interview was obtained for 1289 (64.5%) of the sample, at a median time of 234 days after death (range: 103-374). Higher response rates were associated with home death (67.7%) and with a higher education (>70%). Conversely, a lower response rate was observed when the caregiver was the spouse (56.2%). Response rates ranged from about 80% for letters sent four to six months after the patients’ death to about 60% for letters sent after eight months or more. A descriptive analysis of refusals, based on the transcripts of the telephone calls, allowed classification of 61% of refusals for at least one of the two dimensions examined: caregiver psychological suffering and quality of care received by the patient. Psychological suffering was present in 99% of refusals examined for this dimension (48%). Conversely, a poor quality of care was reported by 63% of the refusals examined for this dimension (23%). Conclusion: The ISDOC survey provides a representative picture of the needs and problems associated with the last three months of life of Italian cancer patients.

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Palliative care: fourth report of session 2003-04; volume 2; oral and written evidence

1.. As one of our witnesses observed, "we all die … 100% mortality is an immutable fact and it is not actually a sign of failure".[1] However, death remains the last taboo. Every year about 520,000 people die in England, around a quarter of whom access some form of palliative care. Many patients experience "severe symptoms" and "psychosocial problems" in their last months of life.[2]

2. Palliative care has much to offer in terms of addressing these problems, with its goal of achieving the best quality of life for the patient with advanced progressive illness, and for their families, friends and carers. Sir Nigel Crisp, Chief Executive of the NHS, has described better care of the dying as "a touchstone for success in modernising the NHS" and "one of the really big issues" which must be addressed.[3]

3. We announced our inquiry into palliative care on 23 January 2004 with the following terms of reference:

The Committee will inquire into the provision of hospice and palliative care by the NHS and by independent services, including the related support services of local authorities and other agencies for both adults and children. The inquiry will examine the extent to which the needs and wishes of patients of different ages are taken into account, including their care choices, ethnicity, cultural and spiritual beliefs. It will address the financing, governance, staffing, location and quality of palliative care.

In particular the Committee will examine:

  • Issues of choice in the provision, location and timeliness of palliative care services, including support to people in their own homes.
  • Equity in the distribution of provision, both geographical and between different age groups.
  • Communication between clinicians and patients; the balance between people's wishes and those of carers, families and friends; the extent to which service provision meets the needs of different cultures and beliefs.
  • Support services, including domiciliary support and personal care.
  • Quality of services and quality assurance.
  • The extent to which services meet the needs of different age groups and different service users.
  • Governance of charitable providers, standards of organisation, links to the NHS and specialist services.
  • Workforce issues, including the supply and retention of staff and the quality and adequacy of training programmes.
  • Financing, including the adequacy of NHS and charitable funding and their respective contributions and boundaries.
  • The impact and effectiveness of Government policy including the National Service Frameworks, the Cancer Plan and NICE recommendations.
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Effectiveness of sensory discrimination training when delivered by family members: a pilot study

The proportion of disabled stroke survivors is increasing. These people may experience loss of sensation that negatively impacts on performance and participation in daily activities. The value of adopting active approaches to rehabilitation is growing; however, high costs and demand over an extended period of time impose limits on therapist-based application. Informal carers and family members are a potential, low-cost resource for expanding the scope of rehabilitation across environments and over extended time periods. We systematically developed and established the effectiveness of an approach to retraining lost sensation and function in the hand that has positive outcomes in relation to the ability to feel everyday textures and objects and use the hand in daily tasks. The purpose of this study was to investigate whether family members, as surrogate therapists, are able to effectively conduct the sensory training program in home environments. Three single-case quasi-experiments were conducted in which stroke survivors' spouses implemented the training program across touch or limb position sensations. We found positive treatment effects in all cases. These findings indicate that selected surrogate therapists (spouses) can successfully implement a program of sensory retraining when provided 2 to 3 hours of training and supervision by a qualified therapist.

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‘If they’re helping me then how can I be independent?’ The perceptions and experience of users of home-care re-ablement services

Home-care re-ablement is a short-term, intensive service that helps people to (re-) establish their capacity and confidence in performing basic personal care and domestic tasks at home, thereby reducing needs for longer term help. Home-care re-ablement is an increasingly common feature of English adult social care services; there are similar service developments in Australia and New Zealand. This paper presents evidence from semi-structured interviews conducted in early 2010 with 34 service users and 10 carers from five established re-ablement services in England. The interviews formed part of a larger, mixed-methods study into the immediate and longer term impacts and cost-effectiveness of home-care re-ablement services. There was clear evidence that interviewees felt that they had benefitted from re-ablement services; most service users and their families valued the intervention. However, the interviews also identified potential barriers to optimal independence for some service users, particularly those with progressive conditions, sensory impairments, specific cultural needs, or who lived alone. The beneficial impacts of re-ablement could also be reduced if users failed to understand the aims of the service, or if the service failed to provide support with activities or outcomes that were particularly important to the service user or carer. Putting the lived experiences of people receiving re-ablement at the centre of analysis, this paper concludes that re-ablement services have the potential for enhanced effectiveness, particularly if there is more understanding of users' own priorities and concepts of independence.

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Carers’ perspectives on the internet: implications for social and health care service provision

To date, little is known about carers’ experience of using online services and informa­tion. Data are reported from the Carers Online national postal survey of 3,014 adult carers and from an assisted access study involving 60 other adults who had been given training and cost-free Internet access at home. Half of the survey respondents reported having used the Internet on at least one occasion for a range of purposes related to both caring and other aspects of their lives. Major barriers to use identified by both users and non-users included lack of access to equipment and the Internet, difficulties with equipment and systems, cost, limitations on time, and lack of interest and skill. Fourteen per cent of the whole sample said that nothing would encourage them to use the Internet. All of the assisted access group used the Internet for a similarly wide range of purposes. Key benefits identified included convenience, flexibility, speed and range of information available, while problems with equipment and systems and time constraints were major barriers to effective Internet use. Findings suggest that while direct Internet access has some benefits for some carers, it should currently be only one of a range of ways of meeting their information needs.

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Caring for our future: progress report on funding reform: presented to Parliament by the Secretary of State for Health ... July 2012

Care and support is something that everyone in this country will experience and be part of at some point in their lives. Some people have impairments from birth, or develop an impairment or mental health condition during their working life, and use care and support to maintain active and independent lives. Many, as they become older, become more frail and rely on care and support from others. As the Prime Minister’s Challenge on Dementia has already shown, we are committed to improving the lives of people with care needs. This report, and the White Paper and draft Care and Support Bill published alongside this report, are about how we provide high quality care and support for all. 

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Application of the capability approach to health economics research involving informal carers of people with dementia

In the UK, the number of people with dementia is increasing along with life expectancy - over half of the £23bn annual cost of dementia is due to informal care time. Therefore, there is an economic argument for identifying clinically-effective and cost-effective ways to maintain and improve carer quality of life (QoL). This thesis explores the suitability of a capability based instrument, the ICECAP-O, for measuring QoL in informal carers of people with dementia. Methods: Systematic reviews, qualitative interviews, survey data and clinical trial data were used. Construct validity of the ICECAP-O was examined using baseline data from the Challenge FamCare study of people with dementia and challenging behaviours, and an online survey created to collect additional data. A cost-effectiveness analysis was undertaken using a subsample of carers in the REMCARE trial of joint-reminiscence therapy (RT). Results: The current evidence base for interventions to support carers of people with dementia is poor, with few economic evaluations existing. Qualitative work found the major themes affecting carer QoL overlapped well with capability instruments, suggesting this framework is suitable for carer research. Validity work found the ICECAP-O to be feasible and valid for use with carers. At the end of the 10 month RT trial, the mean difference in ICECAP-O scores between groups was -0.02 (bootstrapped 95% Cl of -0.1 05 to 0.066) and the mean difference in costs was £1 ,464 (bootstrapped 95% Cl of £758 to £2,313), RT was dominated by usual care. The cost-effectiveness acceptability curve indicated a 2% probability that RT was cost-effective at a willingness to pay threshold of £20,000 per point improvement and an 8% probability that RT was cost-effective at a threshold of £30,000 per point improvement on the ICECAP-O.

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Improving services and support for people with dementia: sixth report of session 2007-08: report, together with formal minutes, oral and written evidence

Dementia is a term for a range of progressive, terminal organic brain diseases. Dementia affects over 560,000 people in England and costs some £14 billion a year. Parallels can be drawn between attitudes towards dementia now and cancer in the 1950s, when there were few treatments and patients were commonly not told the diagnosis for fear of distress. There are also stigmas associated with mental health and older people's issues, which present barriers to improving awareness, understanding and openness about dementia. Despite its significant human and financial impact, the Department has not given dementia the same priority status as cancer and coronary heart disease. As a result the NHS has not afforded dementia the same focus for improvement. Large numbers of people do not receive a formal diagnosis for a variety of reasons including GPs' lack of knowledge and/or confidence to make a diagnosis, fear of dementia, and a perception amongst the public and professionals that little can be done to help people with dementia.

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Creating a Supportive Environment for Living with Stroke in Rural Areas: Two Low-Cost Community-Based Interventions

With the growing burden of chronic illness affecting aging populations, rural health systems are faced with unique challenges to support and promote health in their communities. The Yarmouth Stroke Project was a 5-year initiative aimed at improving health care services for stroke survivors in rural Nova Scotia, Canada. A needs assessment indicated a lack of support to self-manage stroke during community re-integration. The needs reported by stroke survivors and their caregivers included informational and emotional support. A logic model approach was used to frame program planning leading to the design of two low-cost interventions. The first, a Community Resource Guide, was developed to address informational needs and enable stroke survivors to access community-specific resources. The second intervention, designed to address the emotional support needs of stroke survivors and their caregivers, involved collection and publication of local narratives. The stories described the experiences of community members affected by stroke, offering practical knowledge and messages of hope. The resource guide and stories represent two low-cost strategies for supporting and promoting the health of people living with stroke in rural settings.

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Gender differences in the construction and experience of cancer care: The consequences of the gendered positioning of carers

The experience and construction of caring in 50 informal cancer carers, 35 women and 15 men, was examined using a critical realist approach and a mixed method design. Women reported higher rates of depression, anxiety, unmet needs and burden of care than men. No gender differences were found in time spent care-giving, suggesting that gendered roles are implicated in distress and coping. Semi-structured interviews with 13 carers were used to identify gender differences in caring, analysed using positioning theory. Women described being positioned as all encompassing expert carers, expected to be competent at decision-making, a range of physical caring tasks, and provision of emotional support for the person with cancer. The consequences of this positioning were over-responsibility and self-sacrifice, physical costs and overwhelming emotions, which were self-silenced. In contrast, men carers positioned caring as a competency task which they had mastered, and which provided them with satisfaction, with the emotions of the person with cancer, or their own emotions, being negative aspects of caring. It is concluded that cancer caring is tied to gendered constructions and expectations, with considerable implications for psychological well-being and coping, and for carer support services, which need to take gender issues on board.

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Training informal carers of stroke patients reduces health and social care costs in the year following a stroke

Question: Is training informal carers of people who have had a stroke cost-effective?

Study design: Single blind randomised controlled trial.

Main results: Carer training did not affect quality–adjusted life years (QALYs) lost over one year (QALYs: untrained carers 0.94 at baseline to 0.90 at 1 year, trained carers 0.94 at baseline to 0.91 at 1 year, between group difference reported non-significant). Carer training reduced patients’ initial hospital stay (mean stay 30.8 days with training v 43.2 days with no training; mean difference –12.4 days, 95% CI –19.5 to −5.6). Carer training reduced the total cost of patient care in the year following the stroke, mostly due to reducing the initial hospital stay (see Results table).

Authors’ conclusions: Training informal carers of stroke patients significantly reduces health and social care costs over the year following the stroke. This difference was mostly attributable to a reduced hospital stay among patients whose carers had received training.

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The emotional costs of caring incurred by men and women in the British labour market

This study investigates whether men and women in caring occupations experience more negative job-related feelings at the end of the day compared to the rest of the working population. The data are from Wave Nine of the British Household Panel Survey (1999) where respondents were asked whether, at the end of the working day, they tended to keep worrying or have trouble unwinding, and the extent to which work left them feeling exhausted or “used up.” Their responses to these questions were used to develop ordinal dependent variables. Control variables in the models include: number of children, age, hours worked per week, managerial responsibilities and job satisfaction, all of which have been shown in previous research to be significantly related to “job burnout.” The results are that those in caring occupations are more likely to feel worried, tense, drained and exhausted at the end of the working day. Women in particular appear to pay a high emotional cost for working in caring occupations. Men do not emerge unscathed, but report significantly lower levels of worry and exhaustion at the end of the day than do women.

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Adults with Incapacity (Scotland) Act 2000: guardianship and intervention orders: making an application: a guide for carers

This guide is for carers who are concerned that the person they care for is unable to take action or make some or all decisions in relation to their finances, personal welfare or health, due to a mental disability or severe communications difficulties, such as a stroke. It provides information on how the Adults with Incapacity (Scotland) Act 2000 can help, the purpose of guardianship and intervention orders, considerations to make before taking forward an application for a guardianship or intervention order, deciding what powers to apply for, how to make an application, procedures and costs, and what to do next when you have been appointed.

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Costs and caregiver consequences of early supported discharge for stroke patients

Background and Purpose— Early supported discharge (ESD) for stroke has been shown to yield outcomes similar to or better than those of conventional care, but there is less information on the impact on costs and on the caregiver. The purpose of this study is to estimate the costs associated with an ESD program compared with those of usual care.

Methods— We conducted a randomized controlled trial of stroke patients who required rehabilitation services and who had a caregiver at home.

Results— Acute-care costs incurred before randomization when patients were medically ready for discharge averaged $3251 per person. The costs for the balance of the acute-care stay, from randomization to discharge, were $1383 for the home group and $2220 for the usual care group. The average cost of providing the 4-week home intervention service was $943 per person. The total cost generated by persons assigned to the home group averaged $7784 per person, significantly lower than the $11 065 per person for those assigned to usual care. A large proportion of the cost differential between the 2 groups arose from readmissions, for which the usual care group generated costs more than quadruple those of the home intervention group.

Conclusions— Providing care at home was no more (or less) expensive for those with greater functional limitation than for those with less. Caregivers in the ESD group scored consistently lower on the Burden Index than caregivers with usual care, even caregivers of persons with major functional limitations. For persons recovering from stroke and their families, ESD provides a cost-effective alternative to usual care.

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The role of the dementia specialist nurse in acute care: a scoping review

Aims and objectives: To identify the potential benefits of dementia specialist nursing and to inform the implementation of roles to support people with dementia during hospital admission.

Background: Extended stays and adverse events mean that hospital admissions are costly for people with dementia, and patient experiences and outcomes can be poor. Specialist nurses have been identified as having potential to enhance care quality, reduce excess stays and reduce costs, but the evidence base for dementia specialist nurse roles has not previously been synthesised.

Design: Scoping review.

Data sources: Cochrane Library, Campbell Collaboration, Clinical Evidence, Evidence-Based Medicine, York Centre for Reviews and Dissemination, PubMed, Medline, CINAHL and PsycInfo databases and internet searches and personal libraries/expert consultation to identify grey literature.

Methods: Initial scoping searches were used to inform more focused systematic searches. Studies directly evaluating dementia nurse specialist roles or giving evidence of effectiveness of interventions/services that could be delivered by them to improve core outcomes were identified by one reviewer and verified by a second reviewer.

Results: While direct evidence for the effectiveness of these roles is lacking, a number of areas were identified in which a nurse specialist role could make a contribution, including preventing adverse events and improving patient experiences and outcomes. There is a considerable body of evidence for the effectiveness of these interventions although the volume of evidence for specific interventions is not always significant.

Conclusions: The evidence indicates that a skilled dementia specialist nurse, undertaking a clearly defined role, and working directly with people with dementia and their carers for a significant proportion of the time, could benefit people with dementia in hospitals and their family carers.

Relevance to clinical practice: Clear guidance for the development and implementation of dementia specialist nurse roles in acute hospital settings.

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The search for meaning in HIV and AIDS: the carers' experience

This article explores informal carers' experiences in caregiving for people living with HIV and AIDS. The search for meaning encompasses the ways in which carers find meaning in caregiving. A grounded theory approach was taken. Data were collected by means of 43 in-depth interviews and participant observation. Caregivers felt that it was important to have control over the emphasis that HIV had within their lives and developed an attitude that put the virus in perspective. Getting involved in HIV and AIDS work outside of the immediate caregiving relationship was evident. The motivation for this was in part a reaction to prevailing societal views on HIV and in part altruistic in that it provided further meaning for the caregiving experience. This study suggests that finding meaning in caregiving is a powerful way to achieve a balance between the costs of caregiving and personal reward.

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Future of social media in health and care with co-production

Future of health in EU faces the triple challenges of ageing, fiscal restriction and inclusion. In the UK the number of aged people will increase to 6.6 million in the next 25 years. In Scotland, the group people 74+ are projected to increase most dramatically by 82% by 2035. That statistics show every day the needs of older people are growing and an increasing number of carers are required. Now the number of carers are around 10% of population of the UK. In next 25 years the population of carers will rise to 9 million. The current value of care is worth an estimated £119bn per year - considerably more than total spending on the NHS. Hence government searches for ways to reduce costs while maintaining quality of care. The full participation of informal carers in the co-production of health and care has the potential to play a significant role in the sustainability of health and care delivery. A pressing issue is how to coordinate this massive resource with the formal health and care system to enable true co-production of health and care. Increasingly e-health, is seen as the tool to re-shape healthcare systems. In particular, social media (SM) are seen as critical enabler for co-production.

Our study investigates the current and possible future for SM as an enabler of co-production in health and care. To achieve these aims two main sets of questions are asked: what are the current uses of SM in health and social care? How can SM be reshaped to enable health and care coproduction? We consider a typology of opportunities and limitations of SM for health and care: - Existing health and care service bundles with existing or new SM tools - New health and care service bundles with existing or emerging SM tools

So far we have: a) Characterised current uses of SM and have identified benefits (and risks) of SM for health and care by reviewing the literature; b) Identified coordination tools and social sensemaking as key emerging trends in the use of SM; c) Identified health and care integration as a key driver for service redesign and for the adoption of co-production and have begun to characterise the needs SM can meet in this context. d) And begun preparing to collect data through collaboration with the Living it Up Project (a sub-project of DALLAS study - Delivering Assisted Living Lifestyles at Scale, a £23 million partnership between the Technology Strategy Board and government departments, launched in June 2011) which is a programme aiming to support better health, wellbeing and active lifestyles in Scotland and is exploring new services and modes of cooperation

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Caring for a relative with dementia: family caregiver burden

This paper is a report of part of a study to investigate the burden experienced by families giving care to a relative with dementia, the consequences of care for the mental health of the primary caregiver and the strategies families use to cope with the care giving stressors. The cost of caring for people with dementia is enormous, both monetary and psychological. Partners, relatives and friends who take care of patients experience emotional, physical and financial stress, and care giving demands are central to decisions on patient institutionalisation. A volunteer sample of 172 caregiver/care recipient dyads participated in the study in Cyprus in 2004-2005. All patients were suffering from probable Alzheimer's type dementia and were recruited from neurology clinics. Data were collected using the Memory and Behaviour Problem Checklist, Burden Interview, Centre for Epidemiological Studies-Depression scale and Ways of Coping Questionnaire. The results showed that 68·02% of caregivers were highly burdened and 65% exhibited depressive symptoms. Burden was related to patient psychopathology and caregiver sex, income and level of education. There was no statistically significant difference in level of burden or depression when patients lived in the community or in institutions. High scores in the burden scale were associated with use of emotional-focused coping strategies, while less burdened relatives used more problem-solving approaches to care-giving demands. Conclusion. Caregivers, especially women, need individualized, specific training in how to understand and manage the behaviour of relatives with dementia and how to cope with their own feelings.

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Time-bound opportunity costs of informal care: Consequences for access to professional care, caregiver support, and labour supply estimates

The opportunity costs associated with the provision of informal care are usually estimated based on the reduced potential of the caregiver to partake in paid work (both in terms of whether they are able to undertake paid work, and if so the hours of work undertaken). In addition to the hours of informal care provided, these opportunity costs are also likely determined by the necessity to perform particular informal care tasks at specific moments of the day. The literature, to date, has largely overlooked this dimension of informal care. We used Dutch data from time use diaries which report patterns of informal care throughout the day which enables investigation of when particular activities are undertaken. We found that whereas some tasks must be performed at a relatively fixed time of day, others are shiftable and can be performed at other times or even on different days. Household and organisation activities are more likely to be undertaken by employed caregivers, and seem largely to be shiftable; whereas personal care contains unshiftable activities. This implies additional opportunity costs of providing personal care tasks – we term these “time-bound” opportunity costs. Since the care recipient’s need for care may in part relate to unshiftable tasks, we conclude that one should be careful with using care need as an instrument of informal care in labour supply equations.

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Malnutrition in the UK: policies to address the problem

In 2007, the estimated cost of disease-related malnutrition in the UK was in excess of £13×109. At any point in time, only about 2% of over 3 million individuals at risk of malnutrition were in hospital, 5% in care homes and the remainder in the community (2–3% in sheltered housing). Some government statistics (England) grossly underestimated the prevalence of malnutrition on admission and discharge from hospital (1000–3000 annually between 1998 and 2008), which is less than 1% of the prevalence (about 3 million in 2007–2008) established by national surveys using criteria based on the ‘Malnutrition Universal Screening Tool’ (‘MUST’). The incidence of malnutrition-related deaths in hospitals, according to government statistics (242 deaths in England in 2007), was also <1% of an independent estimate, which was as high as 100 000/year. Recent healthcare policies have reduced the number of hospital and care home beds and encouraged care closer to home. Such policies have raised issues about education and training of the homecare workforce, including 6 million insufficiently supported informal carers (10% of the population), the commissioning process, and difficulties in implementing nutritional policies in a widely distributed population. The four devolved nations in the UK (England, Scotland, Northern Ireland and Wales) have developed their own healthcare polices to deal with malnutrition. These generally aim to span across all care settings and various government departments in a co-ordinated manner, but their effectiveness remains to be properly evaluated.

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The daily grind of the forgotten heroines: experiences of HIV/AIDS informal caregivers in Botswana

With the increasing number of people living with HIV/AIDS and the escalating costs of health care, there is an increasing demand for informal caregiving in the community. Currently, much emphasis is placed on individuals who are living with HIV/AIDS (in terms of the provision of social, psychological and economic support), but very little attention has been paid to the well-being and quality of life of informal caregivers. Lack of support and care for caregivers may have a negative impact on the quality of care and effective services for individuals living with HIV/AIDS. This paper is based on findings from a qualitative study that explored major sources of stress associated with caregiving among informal caregivers in a village in the southern part of Botswana. The paper suggests that informal caregivers are an integral part of the continuum of care. As a result, they need to be nurtured and supported for the betterment of those both infected and affected by HIV/AIDS. The paper concludes by discussing the implications for further research, policy and programme development.

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An interprofessional approach to shared decision making : an exploratory case study with family caregivers of one IP home care team

Background: Within the context of an exploratory case study, the authors assessed the perceptions of family caregivers about the decision-making process regarding relocating their relative and about the applicability of an interprofessional approach to shared decision making (IP-SDM). They also assessed perceptions of health professionals and health managers about IP-SDM. 

Methods: From November 2010 to October 2011, we worked with one IP home care team dedicated to older adults (the case) from a large primary health care organization in Quebec City, Canada. We identified six of their clients who had faced a decision about whether to stay at home or move to a long-term care facility in the past year and interviewed their family caregivers. We explored the decision-making process they had experienced regarding relocating their relative and their perceptions about the applicability of IP-SDM in this context. Attitudes towards IP-SDM and potential barriers to this approach were explored using a focus group with the participating IP home care team, individual interviews with 8 managers and a survey of 272 health professionals from the primary care organization. A hybrid process of inductive and deductive thematic analysis was used and data were triangulated across all sources.

Results: Family caregivers reported lack of agreement on the nature of the decision to be made, a disconnection between home care services and relatives’ needs, and high cost of long-term care alternatives. Factors influencing their decision included their ability to provide care for their relative. While they felt somewhat supported by the IP home care team, they also felt pressured in the decision. Overall, they did not perceive they had been exposed to IP-SDM but agreed that it was applicable in this context. Results from the survey, focus group and interviews with health professionals and managers indicated they all had a favourable attitude towards IP-SDM but many barriers hampered its implementation in their practice.

Conclusions: The family caregivers in this study did not experience IP-SDM when relocating their relative. Added to results obtained with health professionals and managers, this highlights the need for an effective intervention targeting identified barriers to implementing IP-SDM in this context.

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Psychological well-being of spouses of stroke patients during the first year after stroke

OBJECTIVE: To investigate whether spouses' psychological well-being changed between the first weeks after their partner's stroke and four months and one year later, and to study the relationship between spouses' psychological well-being and objective characteristics of the stroke patients.

DESIGN: Prospective, longitudinal study.

SETTING: Hospital care and follow-ups.

SUBJECTS: Sixty-seven consecutively enrolled spouses to first-ever stroke patients < 75 years.

MAIN MEASURES: The Psychological General Well-Being (PGWB) Index. Clinical examination of the stroke patients. The Barthel Index.

RESULTS: The spouses' psychological well-being was significantly lower in the first weeks after their partner's stroke as compared with norms. At four months, it had increased significantly. Between four months and one year, individual changes were observed in both positive and negative directions; thus, the mean level of the group remained constant. The spouses' psychological well-being in the first weeks was significantly related to the patients' sensorimotor impairments, while it was related at four months to cognitive impairment and the patients' abilities in self-care. At one year, psychological well-being was related to remaining sensorimotor and cognitive impairments. A significant relationship was also seen between the spouses' and the stroke patients' emotional health.

CONCLUSIONS: The spouses' psychological well-being increased after the first chaotic weeks. The presence of visible impairments initially seemed to affect spouses' emotional health, while cognitive and emotional impairments became more evident in everyday life. In the long term, however, the spouses' individual life situations and coping abilities seem to be of relatively increasing importance for their continued well-being.

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Prevention: Reablement

The film provides an introduction to home care reablement. Reablement is a relatively new service aimed at supporting people to regain independence that may have been reduced or lost through illness or disability. The film focuses on the reablement service in the London Borough of Sutton, known as START (Short Term Assessment and Reablement Team), where we follow the experiences of two people using the service and hear from the manager and senior carer. We also hear from health economist Prof Julien Forder about new research evidence on the cost effectiveness of reablement.

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Mapping support policies for informal carers across the European Union

Background: At a time when health and social care services in European countries are under pressure to contain or cut costs, informal carers are relied upon as the main providers of long-term care. However, still little is known about the availability of direct and indirect support for informal carers across the European Union.

Methods: Primary data collection in all EU member states was supplemented with an extensive review of the available literature.

Results: Various forms and levels of support have been implemented across Europe to facilitate the role of informal caregivers. Financial support is the most common type of support provided, followed by respite care and training. Most countries do not have a process in place to systematically identify informal carers and to assess their needs. Policies are often at an early stage of development and the breadth of support varies significantly across the EU.

Conclusions: Policy developments are uneven across the member states, with some countries having mechanisms in place to assess the needs and support informal carers while others are only starting to take an interest in developing support services. Given the unprecedented challenges posed by population ageing, further research and better data are needed to capture and monitor information on informal carers, to help design adequate support policies and eventually to evaluate their impact across the EU.

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Burden among partner caregivers of patients diagnosed with localized prostate cancer within 1 year after diagnosis: an economic perspective

Purpose: Informal care plays an important role in the overall care for people with cancer. This study estimates lost productivity and informal caregiving and associated costs among partner caregivers of localized prostate cancer patients within 1 year after diagnosis.

Methods: We applied data from the Family and Cancer Therapy Selection study, a three-wave self-administered survey among patients diagnosed with localized prostate cancer and their partner caregivers in multiple clinics in the USA. Time spent was measured by the sum of working hours lost, informal caregiving hours performed, and hours spent on household chores. The national median income for women 55 years or older was used to calculate costs associated with the time spent using the opportunity cost method. Descriptive and bivariate analyses were conducted.

Results: The average working hours decreased from 14.0 h/week (SD = 17.6) to 10.9 h/week (SD = 15.9), without a significant change in responsibility/intensity at work. The mean annual time spent on informal caregiving and household chores was 65.9 h/year (SD = 172.4) and 76.2 h/year (SD = 193.3), respectively. The mean annual economic burden among partner caregivers was US$6,063 (range US$571–US$47,105) in 2009 dollars accounted for by a mean of 276.2 h (range 26–2,146) in the study sample. The time spent on informal caregiving and household chores varied by patient and caregiver characteristics.

 Conclusions: Pilot estimates on non-medical economic burden among partner caregivers (spouses) during the initial phase of the treatment provide important information for comprehensive estimation of disease burden and can be used in cost-effectiveness analyses of prostate cancer interventions.

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Social care: third report of session 2009-10: volume 1: report, together with formal minutes

The social care system is widely seen as failing and it has long been clear that fundamental and lasting reform is necessary.  Reform is made all the more urgent as an ageing population will mean rising demand for care and support. Projected changes in demographics, availability of support from carers, unit costs of care and other factors indicate that social care in its current form will struggle to meet people's needs. Longer life need not mean more time spent in ill health. Improving public health and developing interventions for long-term conditions could pay major dividends. The old-age "support ratio" (the relative numbers of working-age and older people) is not the most important factor in the likely future affordability of social care. Our society must not underestimate its ability to become more productive and wealthier, nor the contribution that older people will make to that.

In the report below we look at: — The present social care system; — Meeting future demand and costs; — Shortcomings of the present social care system; — Plans for reform; — Achieving lasting reform; and — The way forward. 

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Long-term clinical and cost-effeciveness of psychological intervention for family carers of people with dementia: a single-blind, randomised, controlled trial

Background: Two-thirds of people with dementia live at home supported mainly by family carers. These carers frequently develop clinical depression or anxiety, which predicts care breakdown. We aimed to assess the clinical effectiveness (long-term reduction of depression and anxiety symptoms in family carers) and cost-effectiveness of a psychological intervention called START (STrAtegies for RelaTives).

Methods: We did a randomised, parallel-group trial with masked outcome assessments in three UK mental-health services and one neurological-outpatient dementia service. We included self-identified family carers of people with dementia who had been referred in the previous year and gave support at least once per week to the person with dementia. We randomly assigned these carers, via an online computer-generated randomisation system from an independent clinical trials unit, to either START, an 8-session, manual-based coping intervention delivered by supervised psychology graduates, or treatment as usual (TAU). The primary long-term outcomes were affective symptoms (Hospital Anxiety and Depression Scale total score [HADS-T]) 2 years after randomisation and cost-effectiveness (health and social care perspectives) over 24 months. Analysis was by intention to treat, excluding carers with data missing at both 12 and 24 months. This trial is registered ISCTRN70017938.

Findings: From November 4, 2009, to June 8, 2011, we recruited 260 carers. 173 carers were randomly assigned to START and 87 to TAU. Of these 260 participants, 209 (80%) were included in the clinical efficacy analysis (140 START, 69 TAU). At 24 months, compared with TAU the START group was significantly better for HADS-T (mean difference −2·58 points, 95% CI −4·26 to −0·90; p=0·003). The intervention is cost effective for both carers and patients (67% probability of cost-effectiveness at the £20 000 per QALY willingness-to-pay threshold, and 70% at the £30 000 threshold).

Interpretation: START is clinically effective, improving carer mood and anxiety levels for 2 years. Carers in the control TAU group were seven times more likely to have clinically significant depression than those receiving START. START is cost effective with respect to carer and patient outcomes, and National Institute for Health and Care Excellence (NICE) thresholds. The number of people with dementia is rapidly growing, and policy frameworks assume that their families will remain the frontline providers of (unpaid) support. This cost-neutral intervention, which substantially improves family-carers' mental health and quality of life, should therefore be widely available.

Funding: National Institute for Health Research Health Technology Assessment programme 08/14/06.

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Care roles and employment decision-making: The effect of economic circumstance

This article uses data from a panel of Australian mature-age women to examine the effects of care roles on workers’ intentions to leave their jobs. We focus on how the employment effects of care roles can be shaped by the economic circumstances of the worker. We find that caring for an ill, frail or disabled family member has significantly lower effects on the turnover intentions of mature-age women with ‘poor’ (as compared to favourable) economic circumstances. We interpret this pattern as reflecting the financial costs associated with the provisioning of these types of family care needs.

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The clinical and cost effectiveness of a Breathlessness Intervention Service for patients with advanced non-malignant disease and their informal carers: mixed findings of a mixed method randomised controlled trial

Background: Breathlessness is the most common and intrusive symptom of advanced non-malignant respiratory and cardiac conditions. The Breathlessness Intervention Service (BIS) is a multi-disciplinary complex intervention, theoretically underpinned by a palliative care approach, utilising evidence-based non-pharmacological and pharmacological interventions to support patients with advanced disease in managing their breathlessness. Having published the effectiveness and cost effectiveness of BIS for patients with advanced cancer and their carers, we sought to establish its effectiveness, and cost effectiveness, in advanced non-malignant conditions.

Methods: This was a single-centre Phase III fast-track single-blind mixed method RCT of BIS versus standard care for breathless patients with non-malignant conditions and their carers. Randomisation was to one of two groups (randomly permuted blocks). Eighty-seven patients referred to BIS were randomised (intervention arm n = 44; control arm n = 43 received BIS after four-week wait); 79 (91 %) completed to key outcome measurement. The primary outcome measure was 0–10 numeric rating scale for patient distress due to breathlessness at four weeks. Secondary outcome measures were Chronic Respiratory Questionnaire, Hospital Anxiety and Depression Scale, Client Service Receipt Inventory, EQ-5D and topic-guided interviews.

Results: Qualitative analyses showed the positive impact of BIS on patients with non-malignant conditions and their carers; quantitative analyses showed a non-significant greater reduction in the primary outcome (‘distress due to breathlessness’), when compared to standard care, of –0.24 (95 % CI: –1.30, 0.82). BIS resulted in extra mean costs of £799, reducing to £100 when outliers were excluded; neither difference was statistically significant. The quantitative findings contrasted with those previously reported for patients with cancer and their carers, which showed BIS to be both clinically and cost effective. For patients with non-malignant conditions there was a notable trend of improvement over both trial arms to the key measurement point; participants may have experienced a therapeutic effect from the research interviews, diluting the intervention’s impact.

Conclusions: BIS had a statistically non-significant effect for patients with non-malignant conditions, and slightly increased service costs, but had a qualitatively positive impact consistent with findings for advanced cancer. Trials of palliative care interventions should consider multiple, mixed method, primary outcomes and ensure that protocols limit potential contaminating therapeutic effects in study designs.

Trial registration: Current Controlled Trials ISRCTN04119516 (December 2008); NCT00678405 (May 2008)

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Monetising the provision of informal long-term care by elderly people: estimates for European out-of-home caregivers based on the well-being valuation method

Providing informal care can be both a burden and a source of satisfaction. To understand the welfare effect on caregivers, we need an estimate of the ‘shadow value’ of informal care, an imputed value for the non-market activity. We use data from the 2006–2007 Survey of Health Ageing and Retirement in Europe which offers the needed details on 29,471 individuals in Austria, Belgium, the Czech Republic, Denmark, France, Germany, Italy, the Netherlands, Poland, Spain, Sweden and Switzerland. Of these, 9768 are unpaid non-co-resident caregivers. To estimate net costs, we follow the subjective well-being valuation method, modelling respondents' life satisfaction as a product of informal care provision, income and personal characteristics, then expressing the relation between satisfaction and care as a monetary amount. We estimate a positive net effect of providing mode rate amounts of informal care, equivalent to €93 for an hour of care/week provided by a caregiver at the median income. The net effect appears to turn negative for greater high care burdens (over 30 hours/week). Interestingly, the effects of differences in care situation are at least an order of magnitude larger. We find that carers providing personal care are significantly more satisfied than those primarily giving help with housework, a difference equivalent to €811 a year at the median income. The article makes two unique contributions to knowledge. The first is its quantifying a net benefit to moderately time-intensive out-of-home caregivers. The second is its clear demonstration of the importance of heterogeneity of care burden on different subgroups. Care-giving context and specific activities matter greatly, pointing to the need for further work on targeting interventions at those caregivers most in need of them.

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Welfare changes may cost young carers £3,500 a year

Thousands of young carers and their families could lose more than £3,500 a year under proposed welfare reforms, according to The Children’s Society.

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Going home from hospital: the carer/patient dyad

Aims. This study aimed to provide an in-depth understanding of the process of hospital discharge experienced by the carers of patients ‘at risk’ of unsuccessful discharge from medical wards in three hospitals in the North of England.

Background. The Community Care Act and the Carers Recognition and Services Act placed responsibility on service providers to ensure the smooth discharge of patients from hospital making sure that appropriate community services are in place to support the patient and their informal carer following discharge from hospital. The study, from which this paper is taken, identified patients at risk of unsuccessful discharge and tracked the experiences of the patient and their carer through the discharge process. For the purpose of the study unsuccessful discharge is defined as unplanned readmission within 6 weeks of discharge or extended length of stay.

Design. The study combined qualitative and quantitative methods to identify factors leading to unsuccessful discharge. Logistic regression was used retrospectively with the records of 1500 patients to identify factors predicting unsuccessful discharge. A sample of medical patients predicted to be at risk of unsuccessful discharge, their formal and informal carers, were followed through the discharge process using qualitative techniques to look at decision-making and outcomes related to discharge.

Findings. This paper presents findings relating to patient/carer experiences of the discharge process. It explores the obligate moral climate in which the role of carer is negotiated between professionals, patients, family members, friends and neighbours and the differing assumptions about duty associated with caring roles in hospital and in family and community settings.

Conclusion. The discussion adopts a critical theory perspective to examine the contradictions confronting practitioners, patients and carers arising from hospital policies which promote cost-effective and efficient use of expensive technical resources while simultaneously seeking to identify and meet the needs of patients and carers for care.

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Social Services and Well-being (Wales) Act 2014: part 4 and 5 code of practice (charging and financial assessment)

This code provides guidance to the Part 4 and 5 of the Social Services and Well-being (Wales) Act 2014, in relation to direct payments, choice of accommodation, charging and financial assessment. The Act establishes that local authorities can exercise the discretion to charge for the provision of care and support, or to require a contribution or reimbursement, where they feel it is appropriate to do so and where they have established that the person required to pay any charge, contribution or reimbursement, has sufficient financial means to do so. The code covers: designing a charging policy; common issues in relation to charging; charging for care and support in a care home; choice of accommodation when arranging care in a care home; making payments for additional costs for preferred accommodation; charging for care and support in the community; and charging for support to carers.

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A microeconomic analysis of the impact of estate recovery for long-term care

France’s personalized autonomy allowance (APA) was created in 2002 to address the problem of caring for dependents. The allowance is in the form of a payment of a portion of the expense of personal and homecare services (“copayment”). This allowance is universal and is available to anyone over the age of 60. Eligibility and the amount allocated to eligible persons depends on the level of dependency, and the amount of expense remaining to be paid is based on income.

The generosity of the social security system has, however, been called into question by the growing number of dependent persons in France (due to longer life expectancy) and the anticipated influx of baby boomers into the ranks of the elderly. Society has to make strategic choices regarding the types of care (institutionalization or homecare) and how they are funded (increase in social security deductions, premium assistance for private insurance policies). Lawmakers in France have chosen to extend assistance to dependent seniors for their homecare expenses, which very few other countries offer. The APA shows the nation’s willingness to support homecare for seniors. This fact may have interesting social implications because it implies increased involvement by the family entourage in the provision of care on a daily basis. Nevertheless, this allowance has proven costly to the national budget (EUR 5 billion).

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People into Employment: supporting people with disabilities and carers into work

Carers and people with disabilities are two disadvantaged groups at risk of social exclusion. Work is an important route to social inclusion, but carers and people with disabilities are under-represented in the work force. The present paper reports key findings from a new study that evaluated People into Employment (PIE), a pilot employment project in the north-east of England designed to support people with disabilities, carers and former carers in gaining mainstream work. The study aimed to identify what clients, partner agencies and employers perceived to be PIE's most important services, its strengths and areas where there was scope for further development. The study collected quantitative and qualitative data at the mid-point and at the end of the project through two questionnaire surveys, and interviews with PIE clients, the project development officer, partner agencies and employers. Drawing on the ‘pathway model’, the findings show that PIE's interventions included mobilising, matching, mediating and supporting activities. Key ingredients in PIE's success include: tailor-made job-search activities and training; adjusting the pace at which people move towards sustained employment; recognising and responding to the differing needs of people with disabilities, carers and former carers; confidence boosting; accompanying clients to job interviews; good job matching; and ongoing practical and emotional support for both clients and employers. Rudimentary calculations suggest that the cost per job to the project is less than the cost per job for large national projects. Overall, these findings illustrate how access to employment via flexible job-search services geared up to the local labour market can successfully promote social inclusion for carers and people with disabilities.

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Care management, dementia care and specialist mental health services: and evaluation

Objective: To evaluate a model of intensive case management for people with dementia based in a community-based mental health service for older people.

Method: Quasi-experimental design. Individuals in one community team setting received case management and were compared with those in a similar team without such a service. Fortythree matched pairs were identified. Eligible older people and their carers were interviewed at uptake and again at 6 and 12 months.

Results: The impact of the scheme upon placement occurred in the second year at the end of which 51% of the experimental group remained at home compared with 33% of the comparison group. For the experimental group significant improvements in the social contacts of older people were noted; a decrease in the stress of their carers was observed, together with a reduction in their input to the care of the client; and there were significant improvements on ratings of overall need reduction, aspects of daily living and level of risk. Differences between the two groups based on service receipt showed higher costs for the experimental group.

Discussion: The benefits to older people and their carers confirms previous findings that the most effective case management interventions are those targeted on a highly specific client group. Issues which influence the cost-effectiveness of intensive case management are discussed. The benefits of locating this service within a specialist mental health team are explored in the context of current initiatives to promote greater service integration between health and social services. Copyright © 2002 John Wiley & Sons, Ltd.

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Physical, psychosocial, relationship, and economic burden of caring for people with cancer: a review

The aim of this article is to provide an overview of the issues faced by caregivers of people diagnosed with cancer, with a particular emphasis on the physical, psychosocial, and economic impact of caring. A review of the literature identified cancer as one of the most common health conditions in receipt of informal caregiving, with the majority of caregivers reporting taking on the role of caring because of family responsibility and there being little choice or no one else to provide the care. For some, caregiving can extend for several years and become equivalent to a full-time job, with significant consequent health, psychosocial, and financial burdens. Having a better understanding of the critical and broad roles that caregivers play in the oncology setting and the impact of these on their health and well-being may assist health care professionals in supporting caregivers with these tasks and targeting services and interventions toward those most in need.

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The Impact of Caring on Informal Carers' Employment, Income and Earnings: a Longitudinal Approach

In Australia the policy balance has shifted away from institutional forms of health and aged care towards supporting people in their own homes. This change presupposes a significant and growing supply of informal caring labour. A large proportion of informal carers (40–60 per cent) currently combine paid employment with their caring responsibilities. Using the longitudinal Household, Income and Labour Dynamics in Australia Survey, the paper examines the effect of caring on employment, hours worked and earnings. The analysis shows that working age carers experience disadvantage. Carers are more likely than non-carers to reduce their hours of work or exit from the labour force, and earn lower levels of income. In planning for an ageing population, policies will need to address these negative effects and privatised costs of caring if the supply of informal care is to be sustained in the future.

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The roles of friends and neighbours in providing support for older people

Most published research on informal care for older people focuses on the support provided by relatives. The role of non-kin carers can, however, also be significant in supporting older people in their own homes. In this paper, we report the findings from an exploratory study of the support provided by friends and neighbours who are the main carers of frail older people. It draws on interviews with an opportunistic sample of friends, neighbours and older people, which explored their views about the support arrangements, the reasons why help was provided and any difficulties experienced. Several friends and neighbours provided intensive and frequent help, and some played a key role in co-ordinating other services. One of the main forms of direct support related to older people's quality of life, at a broader level than the practical help provided by statutory services. The flexibility of such support, and the friends' and neighbours' concern for older people as individuals, were particularly important to the people they helped. Nevertheless, such help was not provided without costs to the carers. The study highlights the need for policy-makers and practitioners not to take help from friends and neighbours for granted and, in line with the White Paper Modernising Social Services, to provide the support services they need.

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Identifying target groups for the prevention of depression among caregivers of dementia patients

Background: Depression in informal caregivers of persons with dementia is a major, costly and growing problem. However, it is not yet clear which caregivers are at increased risk of developing depression. With this knowledge preventive strategies could focus on these groups to maximize health gain and minimize effort.

Methods: The onset of clinically relevant depression was measured with the Center for Epidemiologic Studies - Depression Scale in 725 caregivers who were not depressed at baseline and who were providing care for a relative with dementia. Caregivers were followed over 18 months. The indices calculated to identify the most important risk indicators were: odds ratio, attributable fraction, exposure rate and number needing to be treated.

Results: The following significant indicators of depression onset were identified: increased initial depressive symptoms, poor self-rated health status and white or Hispanic race/ethnicity. The incidence of depression would decrease by 72.3% (attributive fraction) if these risk indicators together are targeted by a completely effective intervention. Race/ethnicity was not a significant predictor if caregivers of patients who died or were institutionalized were left out of the analyses.

Conclusion: Detection of only a few characteristics makes it possible to identify high-risk groups in an efficient way. Focusing on these easy-to-assess characteristics might contribute to a cost-effective prevention of depression in caregivers.

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Cost effectiveness of a manual based coping strategy programme in promoting the mental health of family carers of people with dementia (the START (STrAtegies for RelaTives) study): a pragmatic randomised controlled trial

Objective To assess whether the START (STrAtegies for RelatTives) intervention added to treatment as usual is cost effective compared with usual treatment alone. Design Cost effectiveness analysis nested within a pragmatic randomised controlled trial. Setting Three mental health and one neurological outpatient dementia service in London and Essex, UK. Participants Family carers of people with dementia. Intervention Eight session, manual based, coping intervention delivered by supervised psychology graduates to family carers of people with dementia added to usual treatment, compared with usual treatment alone. Primary outcome measures Costs measured from a health and social care perspective were analysed alongside the Hospital Anxiety and Depression Scale total score (HADS-T) of affective symptoms and quality adjusted life years (QALYs) in cost effectiveness analyses over eight months from baseline. Results Of the 260 participants recruited to the study, 173 were randomised to the START intervention, and 87 to usual treatment alone. Mean HADS-T scores were lower in the intervention group than the usual treatment group over the 8 month evaluation period (mean difference −1.79 (95% CI −3.32 to −0.33)), indicating better outcomes associated with the START intervention. There was a small improvement in health related quality of life as measured by QALYs (0.03 (−0.01 to 0.08)). Costs were no different between the intervention and usual treatment groups (£252 (−28 to 565) higher for START group). The cost effectiveness calculations suggested that START had a greater than 99% chance of being cost effective compared with usual treatment alone at a willingness to pay threshold of £30 000 per QALY gained, and a high probability of cost effectiveness on the HADS-T measure. Conclusions The manual based coping intervention START, when added to treatment as usual, was cost effective compared with treatment as usual alone by reference to both outcome measures (affective symptoms for family carers, and carer based QALYs).

Trial Registration ISCTRN 70017938

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Socioeconomic and demographic factors modify the association between informal caregiving and health in the Sandwich Generation

Background Nearly 50 million Americans provide informal care to an older relative or friend. Many are members of the "sandwich generation", providing care for elderly parents and children simultaneously. Although evidence suggests that the negative health consequences of caregiving are more severe for sandwiched caregivers, little is known about how these associations vary by sociodemographic factors. Methods We abstracted data from the Behavioral Risk Factor Surveillance System to determine how the association between caregiving and health varies by sociodemographic factors, using ordinal logistic regression with interaction terms and stratification by number of children, income, and race/ethnicity. Results The association between informal caregiving and health varied by membership in the "sandwich generation," income, and race/ethnicity. This association was significant among subjects with one (OR = 1.13, 95% CI [1.04, 1.24]) and two or more children (OR = 1.17, 95% CI = 1.09, 1.26]), but not in those without children (OR = 1.01, 95% CI [0.97, 1.05]). Associations were strongest in those earning $50,000-$75,000 annually, but these income-dependent associations varied by race/ethnicity. In Whites with two or more children, the strongest associations between caregiving and health occurred in lower income individuals. These trends were not observed for Whites without children. Conclusions: Our findings suggest that the added burden of caregiving for both children and elderly relatives may be impacted by income and race/ethnicity. These differences should be considered when developing culturally appropriate interventions to improve caregiver health and maintain this vital component of the US health care system.

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Gendering the "graying" of society: A discourse analysis of the care gap

This article analyzes to what extent the "care-gap"-that is, too few carers looking after increasing numbers of the elderly has become part of the problem definition of the demographic shift in the Netherlands in reports of the major scientific policy advisor to the government. Do these reports still assume a gender order in which women are informal carers and men are breadwinners? What notions about gender are circulating, and is the gender order challenged by policy recommendations? With a framework for gender-discourse analysis, the author shows that, despite increasing awareness of the care gap, the problem definition remains framed as the costs of collective provision of health care and pensions. Recommendations still assume that women will continue to provide informal care while they also enter the labor market to maintain collective provisions.

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Economic valuation of informal care: the contingent valuation method applied to informal caregiving

This paper reports the results of the application of the contingent valuation method (CVM) to determine a monetary value of informal care. We discuss the current practice in valuing informal care and a theoretical model of the costs and benefits related to the provision of informal care. In addition, we developed a survey in which informal caregivers' willingness to accept (WTA) to provide an additional hour of informal care was elicited. This method is better than normally recommended valuation methods able to capture the heterogeneity and dynamics of informal care. Data were obtained from postal surveys. A total of 153 informal caregivers and 149 care recipients with rheumatoid arthritis returned a completed survey. Informal caregivers reported a mean WTA to provide a hypothetical additional hour of informal care of 9.52 Euro (n=124). Many hypotheses derived from the theoretical model and the literature were supported by the data. CVM is a promising alternative for existing methods like the opportunity cost method and the proxy good method to determine a monetary value of informal care that can be incorporated in the numerator of any economic evaluation. Copyright © 2004 John Wiley & Sons, Ltd.

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Conceptualizing cash for care: the origins of contemporary debates

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 [...]

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Effects of positive cognitions and resourcefulness on caregiver burden among caregivers of persons with dementia

Currently, 5.4 million persons in the USA are diagnosed with dementia, and this number is projected to rise to 7.7 million by the year 2030. Family caregivers provide up to 80% of the care needed by persons with dementia and published work suggests that caring for persons with dementia can be very costly to caregivers' health. This study examined the mediating and the moderating effects of positive cognitions on the relationship between caregiver burden and resourcefulness in 80 caregivers of persons with dementia. A descriptive, correlational, and cross-sectional design was used in this study. The researcher contacted the administrators at the Alzheimer's Association early stage programs in Southeastern Wisconsin and questionnaires were distributed to interested caregivers. Positive cognitions explained 31% of the variance in resourcefulness (F (1, 78)= 35.46, P < 0.001) and as positive cognitions increased, caregivers' resourcefulness increased. Positive cognitions were found to be a mediator as evidenced by a substantial drop in the beta weight of caregiver burden from B= −0.28 to B= −0.11 when positive cognitions were entered into the equation. Interventions to strengthen positive thinking among caregivers of persons with dementia are needed to help caregivers overcome their burden.

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Health economics research into supporting carers of people with dementia: a systematic review of outcome measures

Advisory bodies, such as the National Institute for Health and Clinical Excellence (NICE) in the UK, advocate using preference based instruments to measure the quality of life (QoL) component of the quality-adjusted life year (QALY). Cost per QALY is used to determine cost-effectiveness, and hence funding, of interventions. QALYs allow policy makers to compare the effects of different interventions across different patient groups. Generic measures may not be sensitive enough to fully capture the QoL effects for certain populations, such as carers, so there is a need to consider additional outcome measures, which are preference based where possible to enable cost-effectiveness analysis to be undertaken. This paper reviews outcome measures commonly used in health services research and health economics research involving carers of people with dementia. An electronic database search was conducted in PubMed, Medline, the Cumulative Index to Nursing and Allied Health Literature (CINAHL), PsycINFO, the National Health Service Economic Evaluation Database (NHS EED), Database of Abstracts of Reviews of Effects (DARE) and Health Technology Assessment database. Studies were eligible for inclusion if they included an outcome measure for carers of people with dementia. 2262 articles were identified. 455 articles describing 361 studies remained after exclusion criteria were applied. 228 outcome measures were extracted from the studies. Measures were categorised into 44 burden measures, 43 mastery measures, 61 mood measures, 32 QoL measures, 27 social support and relationships measures and 21 staff competency and morale measures. The choice of instrument has implications on funding decisions; therefore, researchers need to choose appropriate instruments for the population being measured and the type of intervention undertaken. If an instrument is not sensitive enough to detect changes in certain populations, the effect of an intervention may be underestimated, and hence interventions which may appear to be beneficial to participants are not deemed cost-effective and are not funded. If this is the case, it is essential that additional outcome measures which detect changes in broader QoL are included, whilst still retaining preference based utility measures such as EQ-5D to allow QALY calculation for comparability with other interventions.

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Cognitive-behavioural therapy for the management of sickle cell disease pain: identification and assessment of costs

Objective. The aim of the present study was to investigate the economic validity of using a psychological intervention in the management of sickle cell disease (SCD). Thomas et al . ( Br J Health Psychol 1999; 4: 209-29) concluded that cognitive-behaviour therapy (CBT) appears to be immediately effective for the management of SCD pain in terms of reducing psychological distress pain as well as improving coping. Method. The costs of management of SCD were evaluated using a societal viewpoint. This approach includes health and social services as well as costs privately borne by informal carers, but it did not include the economic loss due to patients' foregone earnings. Cost profiles were constructed for each patient taking account of cost generating events 12 months before and 12 months after CBT. Results. The hypothesis of the present study, stating that CBT is economically efficient, was confirmed. However, analysis of longitudinal data suggests that CBT is most cost-effective during the first 6 months after the intervention. Conclusion. The present findings suggest the need for CBT to be integrated into the normal package of care available for all patients with SCD. The clinical implication is that CBT should be routinely offered to patients on a 6-monthly basis.

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Supporting the supporters

A recent study commissioned by the NHS Service Delivery and Organisation research and development programme (SDO) aimed to identify gaps in existing knowledge about the need for services to support mental health carers and what was meant by effectiveness and efficiency in these services. Consultation with key stakeholders was a major part of the study. This article focuses on the main findings of the consultation. Flexibility and responsive were identified as key characteristics of the ideal support service.

Valuing and supporting carers: government response to the committee's fourth report of session 2007-08: first special report of session 2008-09

The Committee welcomes the Government's plans to replace the current system of benefits for carers with one that will differentiate between the support a carer needs because they have no income, and the support they need because of other costs relating to caring responsibilities. However the lack of a timetable for the reforms is a major concern in times of increasing economic uncertainty.

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The case for social care reform - the wider economic and social benefits

Having briefly reviewed current calls for fundamental change within adult social care, this report has sought to explore the potential social and economic benefits of future reform. Rather than viewing spending on adult social care as essentially ‘dead money’, there is scope to re-conceptualise this as a form of social and economic investment – meeting basic needs and providing more of a rights-based approach, but also investing to save via greater prevention/rehabilitation and delivering significant wider benefits for society and the economy by providing better support to users and carers.  

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The indirect costs of long-term care, Research Note 8/2013

Informal care remains the most important source of care for dependent older people, although there are strong country differences across Europe. Most informal carers are either of working age (mostly daughters or daughters-in-law) or older people themselves providing care to their dependent spouses. From the public budget perspective, informal care is often seen as a cost-effective way of providing care. This vision, however, fails to acknowledge the indirect costs of informal care, namely forgone employment or health for informal carers. The research note presented here provides an overview of existing research into the effects of caring on the employment and health of carers, and into the benefits already available to carers in Europe. These include care services, cash benefits and leave for carers. Based on data from the European Quality of Life Survey (EQLS) and the Survey of Health, Ageing and Retirement in Europe (SHARE), a profile of current working-age and older informal carers is provided, specifically their gender and age distribution. Using bivariate and multivariate analysis, the impact of caring on employment (using EQLS) and health (using SHARE) is analysed and policy implications are discussed. The research note also draws on multiple studies and data sources to provide a profile of migrant carers across Europe, with a special emphasis on those providing care at home and/or employed by private households.

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Don't let carers slip off the radar

The article discusses the importance of supporting carers in Great Britain. It states that supporting carers is cost-effective because it prevents crisis intervention, unfitting hospital admission, and delayed transfer of care .It also mentions that if they are not supported, their physical and mental health will be at risk and young carers will have difficulty at school.

'After I've done the mum things': Women, care and transitions

Changes in the relationship of paid work, care and welfare have most impact on women, particularly those who are affected by welfare-to-work policies. A study of care in relation to transitions to the labour market made by women with dependent children in Glasgow suggests that women in low-income households face additional difficulties in achieving a balance of work and care. They may have more care responsibilities than other families but fewer material and social resources with which to carry them out. Neither the male-breadwinner model of family arrangements for the care and costs of children nor the adult-worker model that is replacing it in policy logic, takes into account their social and economic circumstances or the need for both formal and informal care to support successful transitions to further education and employment. Care is neither as straightforward to organise, nor as readily substituted for, as employment and welfare policies, in their limited attention to it, imply. The practices and meanings of care must be considered in depth if it is to be adequately understood and not further marginalised.

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Cost-effectiveness of treatments for Alzheimer's dementia

Care of dementia is extremely resource demanding and has a great impact on both the formal care systems and the situation for informal carers. Thus, the question of cost–effectiveness is crucial. This presentation is, to a great extent, based on the dementia project by the Swedish council on technology assessment in health care. After the database search and quality judgment of papers, 22 papers of drug treatment were finally included. A summary of the situation as regards cost–effectiveness on drugs for Alzheimer’s disease showed that no evidence could be stated on empirical studies. Although most modeling studies indicate cost–effectiveness, this was not regarded as enough support for cost–effectiveness since the empirical studies were inconclusive. The need for larger empirical studies of high standards of quality and modeling studies including an enlarged sensitivity analysis, is evident.

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Psychiatric out-patient clinics for older adults : highly regarded by users and carers, but irreplaceable?

AIMS AND METHOD: The aim of this study was to explore older users' and carers' views of attending out-patient clinics for older adults. A questionnaire was designed to be distributed to all patients attending out-patient clinics for a period of 1 month in January 2007. RESULTS: The response rate for returning the completed questionnaire was 71 per cent, and 95 per cent of these respondents were satisfied with their overall experience of attending out-patient clinics. Although satisfaction levels were high with every aspect of out-patient clinics, 49 per cent preferred the hypothetical option of being seen at home. CLINICAL IMPLICATIONS: The role of psychiatric out-patient departments for older adults merits further research, comparing cost and user/carer acceptability with home or general practitioner surgery-based treatment.

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A systematic review of the effectiveness and cost-effectiveness of different models of community-based respite care for frail older people and their carers

To review the evidence for different models of community-based respite care for frail older people and their carers, where the participant group included older people with frailty, disability, cancer or dementia. Where data permitted, subgroups of carers and care recipients, for whom respite care is particularly effective or cost-effective, were to be identified.

Major databases were searched from 1980 to March 2005. Ongoing and recently completed research databases were searched in July 2005. Data from relevant studies were extracted and quality assessed. The possible effects of study quality on the effectiveness data and review findings were discussed. Where sufficient clinically and statistically similar data were available, data were pooled using appropriate statistical techniques.

Twenty-two primary studies were included. Most of the evidence came from North America, with a minority of effectiveness and economic studies based in the UK. Types of service studied included day care, host family, in-home, institutional and video respite. Effectiveness evidence suggests that the consequences of respite upon carers and care recipients are generally small, with better controlled studies finding modest benefits only for certain subgroups. However, many studies report high levels of carer satisfaction. No reliable evidence was found that respite can delay entry to residential care or that respite adversely affects care recipients. Randomisation validity in the included randomised studies was sometimes unclear. Studies reported many different outcome measures, and all of the quasi-experimental and uncontrolled studies had methodological weaknesses. The descriptions of the studies did not provide sufficient detail of the methods of data collection or analysis, and the studies failed to describe adequately the groups of study participants. In some studies, only evidence to support respite care services was presented, rather than a balanced view of the services. Only five economic evaluations of respite care services were found, all of which compared day care with usual care and only one study was undertaken in the UK. Day care tended to be associated with higher costs and either similar or a slight increase in benefits, relative to usual care. The economic evaluations were based on two randomised and three quasi-experimental studies, all of which were included in the effectiveness analysis. The majority of studies assessed health and social service use and cost, but inadequate reporting limits the potential for exploring applicability to the UK setting. No study included generic health-related quality of life measures, making cost-effectiveness comparisons with other healthcare programmes difficult. One study used sensitivity analysis to explore the robustness of the findings.

The literature review provides some evidence that respite for carers of frail elderly people may have a small positive effect upon carers in terms of burden and mental or physical health. Carers were generally very satisfied with respite. No reliable evidence was found that respite either benefits or adversely affects care recipients, or that it delays entry to residential care. Economic evidence suggests that day care is at least as costly as usual care. Pilot studies are needed to inform full-scale studies of respite in the UK.

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Excluded older people: Social Exclusion Unit interim report

The experience of older age should be a positive one. But whilst many older people enjoy the chance for more leisure, learning new things, or spending time with friends and family, others experience isolation and exclusion. The consultation highlighted three key ways in which respondents say provision needs to improve if older people are to enjoy a better quality of life: joined up services are key; intervening early is important, and investment in low level prevention can reduce costlier interventions later; and older people generally know what they need and want, and they should be involved in the design and – where practicable – the delivery of services. This report is split into three sections: a summary of the issues and challenges; social issues from crime to housing, from transport to employment; and the specific needs of carers, those from minority ethnic communities, and at the way in which support for excluded older people is funded.

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Caregiving-related needs analysis: a proposed model reflecting current research and socio-political developments

The present authors have developed a model for assessing caregiving-related problems and needs, the Economic, Social, Psychological and Educational Requirements Table (ESPERT). The model was based on an analysis of the international literature concerning caregiving-related problems, and current specific European and Italian legislation, as well as the authors’ own research results (which also permitted them to design a specific instrument for the general assessment of caregivers). This paper describes the socio-psychological and socio-political background prompting the development of the model, the general instrument for the assessment of caregivers and an example of its use in a sample of caregivers of cancer patients. In the example study, 80 caregivers of cancer patients were asked to complete questionnaires evaluating their state and trait anxiety, depressive symptoms, personality traits, and specifically, their neuroticism or emotional instability, caregiving strain and the degree of satisfaction with their lives. In addition to the specific information obtained about this group of caregivers, the present results show that the completion of the ESPERT makes it possible to identify the proportion of subjects at economic, social and emotional risk, and to decide rapidly what kind of resources/interventions can be implemented, bearing in mind the most balanced cost–benefit ratio.

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The complex nature of informal care in home-based heart failure management

Aim. This paper is a report of a study to examine the complexities of informal caregiving for people with chronic heart failure. Background. Little is known of the activities involved and underlying informal care. Heart failure is a common and burdensome condition in which carers play an important management role. Method. Semi-structured interviews were carried out with 30 informal carers nominated by patients with mild-to-moderate heart failure (24 spouses, four children, one sibling and one neighbour). Interviews examined knowledge of heart failure, its effects, reported management practices and concerns, decision making and support. The data were collected in 2001. Findings. The management of heart failure was a shared and ongoing responsibility between the carer and patient. Carers’ clinical knowledge of the condition and management was often limited, but they developed extensive knowledge of its personal effects on the patient. Invisible care activities included monitoring signs of symptom exacerbation and energy boundaries against perceived current and future demands and priorities. Visible care activities included medication management, dressing, bathing and help-seeking. Carers responded to patients’ capacities, and adopted philosophies that sought to foster independence while facilitating as normal a life for the patient as was possible and safe. Conclusion.  Interventions for informal carers around effective chronic heart failure management should address both visible and invisible informal caring. Future research is needed to develop interventions with carers to improve quality of care, reduce costs and improve patient quality of life. More research is needed to explore the complexities of lay caregiving and to explore the invisible dimensions of informal care further.

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Care provision within families and its socio-economic impact on care providers

The European Commission (DG EMPL) invited tenders for a study of care provision within families and the socio-economic impact of family care-giving. The tender was won by a team of researchers from the Social Policy Research Unit, University of York, England and Vilans, the Dutch Expertise Centre on Long-Term Care. Both organisations are founding research members of Eurocarers; Eurocarers is an EUwide network of organisations representing carers’ interests or providing services to carers, together with leading research organisations with particular expertise in carers’ policy and practice issues. The mission of Eurocarers is to highlight the situation of carers within EU and member state policy forums ( 

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Home-based care provision within the German welfare mix

With the introduction of long-term care insurance (LTCI) in 1995/96, Germany established a universal long-term care scheme within a cost containment framework to provide public support in defined situations of care dependency. The scheme aimed to promote ageing in place with an emphasis on public support for family care provision as a precondition. A further aim was the expansion of market-oriented professional care services to offer users a choice between family and professional care provision and care providers. The focus of this study is on the interplay of formal and informal family care provision within the institutional framework of LTCI, as well as the organisation, regulations and mix of different types of formal care services. In a first step, an examination of the interplay of formal and informal care provision shows the largely family-oriented care strategy, the burdened situation of informal carers, the mix of rationalities of service use and their interrelationship with socioeconomic inequality. In a second step, an analysis of the organisation of different types of formal services reveals paid care provision that emerges in the interplay of politicians’ strategies to develop professional care services within the framework of LTCI, bottom-up strategies of users to increase the range of services outside the framework of LTCI and efforts of politicians to regulate the latter. Basic orientations of care provision underlying the development process such as user orientation, quality and comprehensiveness guided the process and are used to analyse the development. Finally, the discussion of the situation of care workers reveals a contradictory picture with increasing employment opportunities, a comparably well-qualified workforce and worsening employment conditions. Empirically, the research is based on an institutional analysis of LTCI combined with a literature review and representative statistics.

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Future costs for long-term care: Cost projections for long-term care for older people in the United Kingdom

The purpose of this paper is to analyse the future sustainability of the UK system for provision of long-term care (LTC) due to changes in demography and health status among the older people. It considers how demand for LTC will evolve and to what extent there will be sufficient supply to meet demand. For formal care, this requires an estimate of how much the public purses, and hence taxpayers, will be burdened with LTC costs. For informal care, it involves estimating whether there will be enough carers if current patterns of provision were to continue. The results show that demand for long-term care will start to take off 10 years from now, and reach a peak somewhere after 2040. The research finds that the most significant increase will be in demand for informal care, where the number of recipients are projected to increase from 2.2 million today to 3.0 million in 2050. Relative increases will be similar in all care settings, amounting to between 30 and 50% compared with the levels today; however, the most noticeable increase will be in demand for formal home care, which is projected to be 60% above current levels by 2040. Total expenditure on formal long-term care will increase from £ 11 billion per year today to approximately £ 15 billion per year by 2040 (in 2001 prices). Expressed in taxation terms the effective contribution rate will increase from around 1.0% of total wages today to 1.3% in 2050. Availability of informal carers is potentially a big problem, but the extent of the problem is very sensitive to the assumptions made concerning health improvements and care-giving patterns. © 2005 Elsevier Ireland Ltd. All rights reserved.

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Cognitive-behavioural therapy and motivational intervention for schizophrenia and substance misuse: 18-month outcomes of a randomised controlled trial

BACKGROUND: Comorbid substance misuse in people with schizophrenia is associated with poor clinical and social outcomes. There are few studies of psychological treatments for this population and little long-term follow-up of their benefits. AIMS: To investigate symptom, substance use, functioning and health economy outcomes for patients with schizophrenia and their carers 18 months after a cognitive-behavioural treatment (CBT) programme. METHOD: Patients with dual diagnosis from a randomised controlled trial of motivational intervention, individual CBT and family intervention were assessed on multiple outcomes at 18-month follow-up. Carers were assessed on symptom, functioning and needs over 12 months. Health economy data were collected over 18 months. RESULTS: There were significant improvements in patient functioning compared with routine care over 18 months. No significant differences between treatment groups were found in carer or cost outcomes. CONCLUSIONS: The treatment programme was superior to routine care on outcomes relating to illness and service use, and the cost was comparable to the control treatment.

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MEMENTA—‘Mental healthcare provision for adults with intellectual disability and a mental disorder’. A cross-sectional epidemiological multisite study

Introduction: The study 'Mental healthcare provision for adults with intellectual disability and a mental disorder' (MEMENTA) is a cross-sectional epidemiological study carried out in three different regions of Germany. Its main aim is to assess the prevalence of mental disorders in adults with intellectual disability (ID) as well as quality of mental healthcare for this population.

Methods and analysis: The target population are persons aged between 18 and 65 years with a mild or moderate ID. The study population will be recruited through service providers. A representative sample is realised by two-stage sampling. First, institutions providing services for people with ID (sheltered workshops) are selected in a stratified cluster sampling, with strata being (1) types of service-providing non-governmental organisations and (2) sizes of their sheltered workshops. Then persons working in selected sheltered workshops are selected by simple random sampling. An estimated number of 600 adults with ID will be included. Information will be obtained from the group leaders in the sheltered workshops, informal carers or staff members in sheltered housing institutions and the person with ID. Besides the main outcome parameter of psychiatric symptomatology and problem behaviour, other outcome parameters such as needs for care, quality of life, caregiver burden, health services utilisation and costs for care are assessed using well-established standardised instruments. If a comorbid mental disorder is diagnosed, quality of mental healthcare will be assessed with open questions to all interview partners and, in addition, problem-focused interviews with a small subgroup. Analyses will be carried out using quantitative and qualitative methods.

Ethics and dissemination Approval of all three local ethics committees was obtained. Research findings will add much needed empirical information in order to improve services provided to this vulnerable group of patients.

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Fixing the system?: the experience of service users of the quasi-market in disability services in Australia

A qualitative study involving semi-structured interviews with 31 people with disabilities and 32 carers in the state of Queensland, Australia, found that their experience of supportive service delivery had not improved despite reforms of the service delivery system driven by a version of the quasi-market model. Instead of delivering increased consumer choice and improved efficiency in service delivery, users experienced inadequate service supply, service cutbacks and increased emphasis on cost subsidisation and assessment processes. Additionally, few consumers felt that individualised funding arrangements had personally delivered the benefits which the quasi-market model and associated policy paradigm had indicated they should receive. For many consumers, the notion of consumer 'choice' around service provision was fictitious and they felt that any efficiency gains were at the agency level, largely at the consumers' cost. It is concluded that there appears to be no particular benefit to service users of quasi-market reforms, particularly in policy contexts where service delivery systems are historically under-funded.

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Impact of home based long term care on informal carers

Background: Well coordinated and integrated home based care is an efficient and cost effective model for providing long term care. There is, however, emerging evidence to suggest that family members pay a price for taking on long term care responsibilities at home.; Objective: This article draws on published literature to provide an overview of the health, economic, and social issues faced by informal carers. The objective is to contribute to the knowledge base of clinicians about the impact of chronic disease and disability on families taking on the care responsibility in a home environment, thereby informing the delivery of best practice.; Discussion: In 2006, there were approximately 632,694 primary carers aged 15 years or more in Australia. These carers collectively have the lowest level of wellbeing scored by any group, and compared to the general population have a significantly higher level of depression, were more likely to experience physical pain, and more likely to experience financial stress. Failure by clinicians to recognise the burden on informal carers may result in long term adverse outcomes for this group that may outweigh the benefits of managing people with disability and chronic illness in the community.

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What are the most effective and cost-effective services for informal carers of older people?

Since the community care reforms of the early 1990s, practical support for informal carers has become one of the key building blocks of community care policy in England and Wales. In 2004, Linda Pickard wrote a report for the Audit Commission called The Effectiveness and Cost-effectiveness of Support and Services for Informal Carers of Older People. This summary highlights the key points.

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The Princess Royal Trust for Carers : social impact evaluation of five carers' centres using social return on investment

The Princess Royal Trust for Carers is a UK-wide network of 144 independent Carers’ Centres, which offer support including information, training, facilitating access to statutory services and benefits reviews. The Trust supports the network by providing a national voice for carers, and facilitating The Network to provide carers with the support they need. This report shows that an investment of less than £5 million in services provided by five carers' centres resulted in at least £73 million worth of social gains in a year. The report is a social return on investment analysis that evaluates the impact of the support given by five carers' centres (Harrogate, Hertfordshire, Lewisham, Suffolk and Westminster) over a number of years. Looking across the whole network of 144 carers’ centres supported by The Princess Royal Trust for Carers, the independent analysis estimated the gain based on total funding of £57m to be in the region of £814m per year.

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Changing needs of Chinese family caregivers of stroke survivors

Aim.  To examine the changing needs of Chinese family caregivers before and after stroke survivors’ discharge from hospital.

Background.  Stroke ranks third as the most common cause of death in Hong Kong and is the leading cause of adult disability. Community care has been adopted as the major source of care for older people in Hong Kong and this has impacted on family caregivers.

Design and methods.  This is a descriptive-correlational design using a within-subjects design. The needs of 40 Chinese family caregivers who met the inclusion criteria were assessed before discharge and two weeks later using the Carer Assessment Scale, Cost of Care Index and one open-ended question. Modified Barthel Index measured the functional ability of stroke survivors.

Results.  Family caregivers are able to anticipate most of their needs and to make provision to meet the basic practical needs before discharge. Although needs changed after discharge the four most important needs persisted. These were associated with emotional and psychological problems and financial difficulties. Discharge destinations made no difference to the total scores obtained using the above scales.

Conclusions.  This study provides information about need at a time of transition in an under-researched population of Chinese caregivers. Assessment of need is important with Chinese family carers in order to identify focused interventions in a population, i.e. reluctant to make their needs known to professional services. More research about caregiving problems for Chinese family caregivers at the transition from hospital to community is required.

Relevance to clinical practice.  Ongoing need assessment by nurses who are in regular contact with caregivers in hospital and community will enable appropriate interventions such as providing education and emotional support both before and after discharge to be offered to Chinese communities.

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Predictors of Societal Costs in Dementia Patients and Their Informal Caregivers: A Two-Year Prospective Cohort Study

Objectives: Dementia poses a substantial economic burden on society. Knowing which factors predict high costs in dementia may help to better target interventions and optimize resource allocation. This study aimed to identify predictors of the total societal costs in dementia patients and their informal caregivers.

Design: Prospective cohort study with 2-year follow up.

Setting and Participants: 192 community-dwelling patients with dementia and their primary informal caregivers in the Netherlands.

Measurements: Data on health care resource utilization, informal carer time and caregivers' work absenteeism were collected by cost diaries and interviews. Predictors of total costs were identified for patient–caregiver dyads, and for patients and informal caregivers separately by performing univariate and multivariate generalized linear models.

Results: Societal costs of patient-caregiver dyads averaged €75,084 (SEM: €4,263) in the first year and €99,369 (SEM: €6,441) in the second year. Sixty percent was attributed to costs of informal care. Patient impairments in activities of daily living (ADLs) and instrumental activities of daily living (IADLs), disruptions during daily activities of the caregiver, and receiving case management were significantly associated with higher costs in dyads. The same predictors remained significant for patients' costs separately, and for informal caregivers, a poorer caregiver's quality of life and having more chronic diseases determined higher costs.

Conclusions: The societal costs of dementia are substantial and mainly due to high costs of informal care. The burden for caregivers caused by a disrupted schedule and patients' ADL and IADL dependencies contributed most to the total costs. Interventions targeting these factors effectively might result in relevant economic benefits for society.

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Unpaid carers hold the key to sustainable social care : is it time they got the credit?

This paper reviews the challenges faced by unpaid family carers and the current support and services available to them. It argues that current carer support should be built on and presents the evidence for doing so, including evidence of the opportunities to make substantial savings in residential care costs. The paper suggests a new way in which proposed resource allocation and personal budget systems could be developed in order to sustain caring, avoiding the risk of a new perverse incentive to families to end caring roles. The paper provides some modelling of the costs and benefits of this approach. 

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The opportunity costs of informal care: does gender matter?

In this paper, we investigate the costs borne by both male and female carers in terms of their forgone formal employment opportunities. Traditionally, informal care was supplied by women but nowadays women are not only more likely to work, but also likely to be significant contributors to family finances. For women, this implies that the size of any forgone earnings cost of informal care is increasing. At the same time, population ageing is making for increasing numbers requiring care. From a policy perspective it is therefore helpful to consider a less traditional but nevertheless important source of informal care, men. We find that both male and female carers bear indirect costs in that they are less likely to be in paid work than otherwise similar non-carers and when they are in paid work they earn significantly less. However, we find that the motivation for lower employment participation is not the same for men as it is for women.

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End-of-Life Care in Italian Hospitals: Quality of and Satisfaction With Care From the Caregivers' Point of View—Results from the Italian Survey of the Dying of Cancer

Context: A number of studies have highlighted the poor quality of end-of-life (EOL) care provided in hospital settings, leading to a reduction in the quality of EOL care and increase in patient and caregiver dissatisfaction levels.

Objectives: The aims of this study were the evaluation of the prevalence of major symptoms, treatment, outcomes, information, and care provided to dying cancer patients in Italian hospitals; and an analysis of clinical and socio-demographic factors associated with caregiver satisfaction with the health care provided.

Methods: This is a mortality follow-back survey of 2,000 cancer deaths representative of the country. Caregivers were interviewed about patients' experiences by using a tailored version of the View of Informal Carers—Evaluation of Services questionnaire.

Results: Valid interviews were obtained for 84% (n=364) of the cancer patients who died in hospital. Most Italian cancer patients dying in hospital suffered from a number of untreated or poorly treated symptoms, and only a few reported an acceptable control over physical suffering. Moreover, only two-thirds of patients and one-third of caregivers received basic information on therapies and care. About one-third of the caregivers expressed dissatisfaction with the health care received. The probability of being satisfied was more likely for caregivers of patients living in the north of Italy; caregivers of patients who had not experienced or were only slightly distressed by fatigue; and caregivers who were generally satisfied with hospital facilities and when the health care professionals had provided appropriate information to both patients and caregivers.

Conclusion: This study revealed poor quality of EOL care in Italian hospitals, with almost one-third of the caregivers expressing their clear dissatisfaction. A national policy is, therefore, urgently called for to improve the quality of EOL care in Italian hospitals.

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Carers in the community: the nature, extent and needs of informal care provision within the Western Health Board

Many individuals provide care for people who would otherwise require core from health professionals. The need for 'informal carers' to support health services is likely to increase due to changing socio-demographic trends. However, little is known about the nature and extent of informal core and the needs of carers and those receiving care. The objectives of the study were to assess the psychosocial impact of coring and being cared for, determine the extent of care giving and assess needs and current levels of support.A representative sample of 531 households across Galway, Mayo and Roscommon was selected. Interviewers administered up to three surveys, depending on household composition (carers, those receiving care, non-carers). Eighteen per cent of the population were defined as corers. This equates to more than 19,000 corers throughout the region. The majority of those receiving care were older people. Many carers devoted all their time to their caring role and were on-call 24 hours a day to help the person [...]

Study protocol for the development of a European measure of best practice for people with long term mental health problems in institutional care (DEMoBinc)

Background: This study aims to build a measure for assessing and reviewing the living conditions, care and human rights of people with longer term mental health problems in psychiatric and social care institutions. Protection of their human rights is imperative since impaired mental capacity secondary to mental illness can make them vulnerable to abuse and exploitation from others. They also constitute a major resource pressure for mental health services, social services, informal carers and society as a whole.

Methods/Design: domains are identified by collating results from: i) a systematic review of the literature on institutional care for this service user group; ii) a review of the relevant care standards in each participating country; iii) Delphi exercises in partner countries with mental health professionals, service users, carers and advocates. Common domains and cross-cutting themes are agreed by the principal researchers and an international expert panel. Items are developed to assess these domains and incorporated into the toolkit which is designed to be administered through a face to face interview with the institution's manager. The toolkit is refined in response to inter-rater reliability testing, feedback from interviewers and interviewees regarding its utility, and feedback from key stakeholders in each country about its ability to deliver information that can be used within each country's established systems for quality assessment and review. Cross-validation of the toolkit ratings against service users' quality of life, autonomy and markers of recovery tests whether it can deliver a proxy-measure of the service users' experiences of care and the institution's promotion of their human rights and recovery. The ability of the toolkit to assess the "value for money" delivered by institutions is investigated by comparing toolkit ratings and service costs.

Discussion: The study will deliver the first international tool for the assessment of the quality of institutional care for people with longer term mental health problems that is accurate, reliable, informative, useful and easy to use.

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REMCARE: reminiscence groups for people with dementia and their family caregivers - effectiveness and cost-effectiveness pragmatic multicentre randomised trial

Objectives: The aim of the REMiniscence groups for people with dementia and their family CAREgivers (REMCARE) study was to assess the effectiveness and cost-effectiveness of joint reminiscence groups for people with dementia and their family caregivers as compared with usual care.

Design: A multicentre, pragmatic randomised controlled trial with two parallel arms - an intervention group and a usual-care control group - was carried out. A restricted dynamic method of randomisation was used with an overall allocation ratio of 1 : 1, restricted to ensure intervention groups of a viable size. Assessments, blind to treatment allocation, were carried out at baseline, 3 months and 10 months (primary end point).

Setting: Most participants were recruited through NHS Memory Clinics and Community Mental Health Teams for older people. Assessments were usually carried out in the person's home, and treatment groups were held in a variety of community settings.

Participants: A total of 488 individuals (mean age 77.5 years) with mild to moderate dementia (meeting Diagnostic and Statistical Manual of Mental Disorders-Fourth Edition criteria), who were initially living in the community, and who had a relative or other caregiver maintaining regular contact, who could act as an informant and was willing and able to participate in the intervention, were recruited to the study. Most carers were spouses (71%). A total of 350 dyads completed the study.

Interventions: The intervention consisted of joint reminiscence groups held weekly for 12 consecutive weeks, followed by monthly maintenance sessions for a further 7 months. The sessions followed a treatment manual, and were led by two trained facilitators in each centre, supported by a number of volunteers. Up to 12 dyads were invited to attend each group.

Main outcome measures: The primary outcome measures were self-reported quality of life for the person with dementia and psychological distress for the carer [General Health Questionnaire-28 item version (GHQ-28)]. Secondary outcome measures included autobiographical memory and activities of daily living for the person with dementia, carer stress for the carer and mood, relationship quality and service use and costs for both parties.

Results: The intention-to-treat analysis identified no differences in outcome between the intervention and control conditions on primary or secondary outcomes [self-reported quality of life in Alzheimer's disease: mean difference 0.07, standard error (SE) 0.65; F = 0.48; p = 0.53]. Carers of people with dementia allocated to the reminiscence intervention reported a significant increase in anxiety on a subscale of the GHQ-28 at the 10-month end point (mean difference 1.25, SE 0.5; F = 8.28; p = 0.04). Compliance analyses suggested some benefits for people with dementia who attended more reminiscence sessions; however, carers attending more groups showed increased caregiving stress. Use of health- and social-care services was modest, with no significant difference in service use between conditions. Owing to negligible difference in quality-adjusted life-year gains (derived from European Quality of Life-5 Dimensions) between the conditions the planned full economic analysis was curtailed.

Conclusions: This trial does not provide support for the effectiveness or cost-effectiveness of joint reminiscence groups for people with dementia and their carers. Although there may be some beneficial effects for people with dementia who attend sessions as planned, this must be viewed in the context of raised anxiety and stress in their carers. The reasons for these discrepant outcomes need to be explored further, and may necessitate reappraisal of the movement towards joint interventions.

Current Controlled Trials ISRCTN42430123.

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The economic and social cost of dementia in Ireland

The economic and social burden of dementia on society is the value of all the resources used to prevent, diagnose, treat, and generally cope with the illness. This article assess the overall resource implications of dementia in Ireland. Six main areas are covered in the cost analysis as follows: mortality and life years lost, in-patient acute care, in-patient psychiatric care, residential long-stay care, family care, and primary and social care in the community. The critical role of carers in maintaining people with dementia in their own home is reflected in the results showing that family care accounts for almost 50 percent of the overall resource burden, based on an opportunity cost valuation of carer time.

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Rehabilitation of older patients: day hospital compared with rehabilitation at home. A randomised controlled trial

Objectives: To test the hypotheses that older people and their informal carers are not disadvantaged by home-based rehabilitation (HBR) relative to day hospital rehabilitation (DHR) and that HBR is less costly.

Design: Two-arm randomised controlled trial.

Setting: Four trusts in England providing both HBR and DHR.

Participants: Clinical staff reviewed consecutive referrals to identify subjects who were potentially suitable for randomisation according to the defined inclusion criteria.

Interventions: Patients were randomised to receive either HBR or DHR.

Main outcome measures: The primary outcome measure was the Nottingham Extended Activities of Daily Living (NEADL) scale. Secondary outcome measures included the EuroQol 5 dimensions (EQ-5D), Hospital Anxiety and Depression Scale (HADS), Therapy Outcome Measures (TOMs), hospital admissions and the General Health Questionnaire (GHQ-30) for carers.

Results: Overall, 89 subjects were randomised and 42 received rehabilitation in each arm of the trial. At the primary end point of 6 months there were 32 and 33 patients in the HBR and DHR arms respectively. Estimated mean scores on the NEADL scale at 6 months, after adjustment for baseline, were not significantly in favour of either HBR or DHR [DHR 30.78 (SD 15.01), HBR 32.11 (SD 16.89), p = 0.37; mean difference -2.139 (95% CI -6.870 to 2.592)]. Analysis of the non-inferiority of HBR over DHR using a 'non-inferiority' limit (10%) applied to the confidence interval estimates for the different outcome measures at 6 months' follow-up demonstrated non-inferiority for the NEADL scale, EQ-5D and HADS anxiety scale and some advantage for HBR on the HADS depression scale, of borderline statistical significance. Similar results were seen at 3 and 12 months' follow-up, with a statistically significant difference in the mean EQ-5D(index) score in favour of DHR at 3 months (p = 0.047). At the end of rehabilitation, a greater proportion of the DHR group showed a positive direction of change from their initial assessment with respect to therapist-rated clinical outcomes; however, a lower proportion of HBR patients showed a negative direction of change and, overall, median scores on the TOMs scales did not differ between the two groups. Fewer patients in the HBR group were admitted to hospital on any occasion over the 12-month observation period [18 (43%) versus 22 (52%)]; however, this difference was not statistically significant. The psychological well-being of patients' carers, measured at 3, 6 and 12 months, was unaffected by whether rehabilitation took place at day hospital or at home. As the primary outcome measure and EQ-5D(index) scores at 6 months showed no significant differences between the two arms of the trial, a cost-minimisation analysis was undertaken. Neither the public costs nor the total costs at the 6-month follow-up point (an average of 213 days' total follow-up) or the 12-month follow-up point (an average of 395 days' total follow-up) were significantly different between the groups.

Conclusions: Compared with DHR, providing rehabilitation in patients' own homes confers no particular disadvantage for patients and carers. The cost of providing HBR does not appear to be significantly different from that of providing DHR. Rehabilitation providers and purchasers need to consider the place of care in the light of local needs, to provide the benefits of both kinds of services. Caution is required when interpreting the results of the RCT because a large proportion of potentially eligible subjects were not recruited to the trial, the required sample size was not achieved and there was a relatively large loss to follow-up.

Current Controlled Trials ISRCTN71801032.

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Caregiving in the Pacific Rim: a comparison of Asian and non-Asian caregiving experiences

This study compares the results of two surveys of informal caregivers conducted in California and Hawaii (N = 1677) to determine if there is a uniquely Asian model of caregiving. Differences between Asian and non-Asian caregivers were found in the percentage of male caregivers, the impact of caregiving personally and on the family, and on employment. Furthermore, in multivariate analysis, being of Asian origin retained significance in predicting both positive and negative caregiver outcomes. This study suggests that Asian-american caregivers, while still respecting their cultural caregiving tradition, may be experiencing difficulties in adapting to new roles.

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Informal in-hospital care in a rehabilitation setting in Greece: An estimation of the nursing staff required for substituting this care

Purpose. To explore: (a) the type and frequency of care-giving activities provided by family members in the Rehabilitation Setting (RS), (b) opportunities for family members to receive training in care-giving activities, (c) to what extent caregivers feel free to ask the nursing staff for help and (d) to estimate the number of nursing staff required to substitute this care and thus to estimate the money saved by the RS due to the in-hospital informal care.

Method. A convenience sample of 80 family members was selected. A questionnaire was developed to investigate several aspects of informal in-hospital care. Data was analysed using SPSS for Windows (Release 10.1).

Results. Cultural reasons and nursing staff shortage led 78.8% (n = 63) of the sample to provide informal in-hospital care. Oral and facial care (67.5%), help with getting dressed (62.5%), help with feeding (61.25%, n = 49), making patients' beds (57.5%, n = 46) and assistance with transferring patients from one hospital department to another (56.25%, n=45) was provided on a daily basis by the subjects. 48.75%, (n=39) changed sheets 1-2 times per week, while assistance with transfers from bed to wheel-chair and vice-versa (43.75%, n = 35) was provided 3-4 times per week. The estimated total time spent per week by the subjects on care-giving activities was 34,034 minutes that corresponds to a total of 75.6 working days or 15.12 working weeks. In order to substitute this care, the RS would need to hire 17 more assistant nurses, entailing a cost of from e14,450 to e20,060 per month.

Conclusions. Informal in-hospital care is provided by Greek families in the RS. Nursing care staff shortage combined with cultural factors are the main reasons for this phenomenon. However, it saves the RS and the Greek State money and policy makers should be looking for ways to overcome the nursing shortage.

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Home or hospital? an evaluation of the costs, preferences, and outcomes of domiciliary chemotherapy

This study compares the costs and outcomes of domiciliary and hospital-based chemotherapy, using a prospective randomized cross-over design. Eighty-seven eligible patients were recruited from oncology services at two metropolitan hospitals in Sydney, Australia. Forty patients completed study evaluation requirements, having two months of chemotherapy in each location (home and hospital). The domiciliary service was staffed by hospital-based oncology nurses. Marginal costs of domiciliary treatment over hospital treatment were estimated from the health service perspective. Home-based care was more expensive, largely due to extra nurse time. About half of the eligible patients (n = 87) and 73 percent of the evaluated patients (n = 40) preferred domiciliary care. Most evaluated patients and their informal carers were satisfied with the medical care provided, regardless of location. Patient needs were well met in either location, and no differences were found in quality of life. At current throughput rates, providing chemotherapy in the home was more expensive than providing it in hospital. However, if the demand for chemotherapy were to exceed ward capacity by up to 50 percent, moving chemotherapy into the home could provide a less costly strategy for the expansion of a chemotherapy service without compromising patient outcomes.

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"I washed and fed my mother before going to school": understanding the psychosocial well-being of children providing chronic care for adults affected by HIV/AIDS in Western Kenya

With improved accessibility to life-prolonging antiretroviral therapy, the treatment and care requirements of people living with HIV and AIDS resembles that of more established chronic diseases. As an increasing number of people living with HIV and AIDS in Kenya have access to ART, the primary caregivers of poor resource settings, often children, face the challenge of meeting the requirements of rigid ART adherence schedules and frequent relapses. This, and the long-term duty of care, has an impact on the primary caregiver's experience of this highly stigmatised illness – an impact that is often described in relation to psychological deprivation. Reflecting the meanings attached to caregiving by 48 children in Western Kenya, articulated in writing, through photography and drawing, individual and group interviews, this paper presents three case studies of young caregiving. Although all the children involved in the study coped with their circumstances, some better than others, we found that the meanings they attach to their circumstances impact on how well they cope. Our findings suggest that only a minority of young caregivers attach either positive or negative meanings to their circumstances, whilst the majority attaches a mix of positive and negative meanings depending on the context they are referring to. Through a continuum of psychosocial coping, we conclude that to provide appropriate care for young carers, health professionals must align their understanding and responses to the psychosocial cost of chronic care, to a more nuanced and contextual understanding of children's social agency and the social and symbolic resources evident in many African communities.

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Service use and cost associated with caring for people with serious mental illness

Background: Patients with severe and enduring mental health problems are increasingly being cared for in the community. Whilst community services continue to develop it is recognized that family members and friends play an important role in the care process.

Aims: (i) to assess the level of service use and associated costs of carers, (ii) to compare service use to that pertaining in the general population, and (iii) to identify carer characteristics that are predictive of cost variations.

Method: Carers were asked for details of services that they had used over the previous 12 months. Service use from this sample was compared with that in the general population. Costs were calculated and the impact that various carer characteristics had on the variation in costs was analysed.

Results: Data were available on 77 carers. Most carers used community health services and a large proportion also had hospital contacts. Service use was similar to that observed in the general population. The mean total service cost was £354 over the 12-month period. Four factors were each able to explain at least 5% of variation in costs.

Conclusions: Carers use a wide range of services. However, the level of use is similar to that observed in the general population, which may suggest that morbidity in carers is not reflected in increased service use for carers of those with serious mental health problems.

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Care arrangements for people with dementia in developing countries

Background: Rapid demographic ageing will soon lead to large increases in the numbers of persons with dementia in developing countries. This study is the first comprehensive assessment of care arrangements for people with dementia in those regions.

Methods: A descriptive and comparative study of dementia care; caregiver characteristics, the nature of care provided, and the practical, psychological (Zarit Burden Interview, General Health Questionnaire) and economic impact upon the caregiver in 24 centres in India, China and South East Asia, Latin America and the Caribbean and Africa.

Results: We interviewed 706 persons with dementia, and their caregivers. Most caregivers were women, living with the person with dementia in extended family households. One-quarter to one-half of households included a child. Larger households were associated with lower caregiver strain, where the caregiver was co-resident. However, despite the traditional apparatus of family care, levels of caregiver strain were at least as high as in the developed world. Many had cutback on work to care and faced the additional expense of paid carers and health services. Families from the poorest countries were particularly likely to have used expensive private medical services, and to be spending more than 10% of the per capita GNP on health care.

Conclusions: Older people in developing countries are indivisible from their younger family members. The high levels of family strain identified in this study feed into the cycle of disadvantage and should thus be a concern for policymakers in the developing world.

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A systematic review of the economic evidence for interventions for family carers of stroke patients

Objectives: To examine the economic evidence for interventions aimed at family carers of stroke patients.

Data sources: Searches (limited to those published in English since 1990) were performed in key databases along with hand searches of relevant papers.

Review methods: Papers were restricted to studies including any economic data (broadly defined) for any intervention targeting carers explicitly or explicitly referring to a carer element, beyond involving carers in the care or intervention for patients (i.e. more than just carers being invited to observe an intervention targeted at the patient). Two reviewers independently screened full papers and extracted data using guidance from the National Institute for Health and Care Excellence, and quality assessment using the Newcastle-Ottawa Quality Assessment Scale (cohort studies), the Delphi list (randomised controlled trials) and guidelines on economic quality from the British Medical Journal. Data were reviewed descriptively as meta analyses were inappropriate due to non-comparability of studies.

Results: Ten papers were included in the review. These were heterogeneous in their design, intervention and economic analyses making comparison difficult. Only three of the ten papers included economic evaluations. All three reported that the intervention was less costly and had better or equivalent outcomes than the control comparator although two of these were based on the same intervention using the same dataset.

Conclusion: here is some limited evidence that interventions for family carers of stroke patients are effective and cost effective. However, due to variation in the types of interventions examined, little can be concluded regarding implications for clinical practice.

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Economic deprivation and its effects on subjective wellbeing in families of people with multiple sclerosis

Background: There has been limited research on the role of financial strain on the adjustment of people with multiple sclerosis.

Aims: This study examined the financial costs of MS and the impact of financial strain on the quality of life and adjustment of people with MS and their families.

Methods: Interviews were conducted with 16 health professionals, 26 people with MS and 11 family members of people who have MS.

Results: Economic deprivation impacted on the subjective well being of many families living with MS. Concerns included adjustment to a lower income if the person with MS reduced or ceased work, and meeting the costs of home alterations, mobility equipment, and special transport. The additional cost of living with MS is a stress factor, especially for people dependent on disability support pensions.

Conclusions: It is anticipated that the findings from this study will raise the awareness of health professionals and politicians regarding the potential impact of financial stress on people with MS and their families.

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Scoping the field : services for carers of people with mental health problems

Mental ill health is very common. Most people with mental health problems live in the community, and as many as 1.5 million people in the UK may be involved in caring for a relative or friend with a mental illness or some form of dementia. Recent legislation and policy initiatives such as the National Strategy for Carers, and the National Service Frameworks for Mental Health and Older People emphasise the importance of providing support for this particular group of carers. The present paper reports the findings of a scoping study to identify what the research tells us about the effectiveness and cost-effectiveness of interventions for the carers of people with mental health problems, and also where there are gaps in the knowledge base. Some 204 evaluation studies were included in the review, just 13 of which had an economic component. The majority of studies were conducted in the USA, and were aimed at carers of people with Alzheimer disease or other forms of dementia. Overall, there was a lack of strong evidence to support any specific interventions, although almost all studies were able to identify some positive outcomes of services provided. In contrast to the relatively narrow approach to effectiveness adopted in most of the studies reviewed, the contributors to a consultation exercise perceived this concept in a far more rounded and holistic way. For them, the process of service delivery was as important as the outcome. There was relatively little research evaluating interventions and services singled out in UK policy initiatives as potentially useful in supporting this group of carers, and further evaluation studies are needed.

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Caring for our future: reforming care and support: impact assessments summary document

Summarises the four Impact Assessments that analyse the impact, costs and benefits of implementing the policies set out in the care and support White Paper 'Caring for our Future: reforming care and support' and the draft 'Care and Support Bill'. This includes assessment of the Reform of the social care law and the analysis of its impact on local authorities and care users. The Impact Assessments at Annexes B to D cover the specific policies set out in the White Paper. These cover: Independence, choice and control; Assessment, eligibility and portability for care users and carers; and Quality, care providers and the workforce. It also outlines why change is needed and how care and support will respond.

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A health economic model for the development and evaluation of innovations in aged care: an application to consumer-directed care-study protocol

Introduction Consumer-directed care is currently being embraced within Australia and internationally as a means of promoting autonomy and choice in the delivery of health and aged care services. Despite its wide proliferation little research has been conducted to date to assess the views and preferences of older people for consumer-directed care or to assess the costs and benefits of such an approach relative to existing models of service delivery.

Methods and analysis A comprehensive health economic model will be developed and applied to the evolution, implementation and evaluation of consumer-directed care in an Australian community aged care setting. A mixed methods approach comprising qualitative interviews and a discrete choice experiment will determine the attitudes and preferences of older people and their informal carers for consumer-directed care. The results of the qualitative interviews and the discrete choice experiment will inform the introduction of a new consumer-directed care innovation in service delivery. The cost-effectiveness of consumer-directed care will be evaluated by comparing incremental changes in resource use, costs and health and quality of life outcomes relative to traditional services. The discrete choice experiment will be repeated at the end of the implementation period to determine the extent to which attitudes and preferences change as a consequence of experience of consumer-directed care. The proposed framework will have wide applicability in the future development and economic evaluation of new innovations across the health and aged care sectors.

Ethics and dissemination The study is approved by Flinders University Social and Behavioural Research Ethics Committee (Project No. 6114/SBREC). Findings from the qualitative interviews, discrete choice experiments and the economic evaluation will be reported at a workshop of stakeholders to be held in 2015 and will be documented in reports and in peer reviewed journal articles.

This is an Open Access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited and the use is non-commercial. See:

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Evaluating community-based programs for dementia caregivers: The cost implications of adult day services

This study analyzes the short- (3 months) and long-term (1 year) cost implications of adult day care, a community-based program that has gained attention for its positive impact on dementia caregivers. A variety of costs (e.g., adult day services, formal service use, informal sources of care, employment changes) were estimated for caregivers (n = 367 at 3 months; n = 201 at 1 year). Results found that the daily costs to reduce caregivers' role overload and depression decreased with adult day service utilization over a 1-year period. The findings emphasize that adult day programs are most effective for dementia caregivers who use these services consistently and for longer periods of time. Moreover, practitioners must develop methods to encourage early utilization of adult day services during the caregiving career to increase the range of benefits.

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Systematic review of respite care in the frail elderly

Objectives: To assess the effectiveness and cost-effectiveness of breaks in care in improving the well-being of informal carers of frail and disabled older people living in the community and to identify carer needs and barriers to uptake of respite services.

Data sources: Major electronic databases were searched from the earliest possible date to April 2008.

Review methods: Selected studies were assessed and subjected to extraction of numerical data for meta-analysis of quantitative studies and extraction of text for thematic analysis of qualitative studies. Quality of the studies was assessed using checklists specifically designed for the current review.

Results: In total, 104 papers were identified for inclusion in the quantitative synthesis, 16 of which were appropriate for meta-analysis. Carer burden was reduced at 2-6 months' follow-up in single-sample studies but not in randomised controlled trials (RCTs) and quasi-experimental studies. Depression was reduced in RCTs in the short term and for home care but not for day care. These effects, however, were not significant in random-effects models. There was a trend for longer interventions to have more positive effects than shorter interventions. There was no effect of respite on anxiety, but it had positive effects on morale and anger and hostility. Single-group studies suggested that quality of life was worse after respite use. There were increased rates of institutionalisation after respite use; however, this does not establish a causal relationship as it may be a result of respite being provided late in the caregiving career. A total of 70 papers were identified for inclusion in the qualitative synthesis. Uptake of respite care was influenced by: carer attitudes to caring and respite provision; the caregiving relationship; knowledge of, and availability of, services; the acceptability to, and impact of respite care on, care recipients; hassles resulting from the use of respite care; quality of respite care; and the appropriateness and flexibility of service provision. Carers expressed needs for active information provision about services, support offered early in the caregiving career, access to a variety of services with flexible provision, reliable transport services, continuity of care, good-quality care, appropriate environments, care that provides benefits for care recipients (socialisation and stimulation), and appropriate activities for care recipients' levels of abilities and interests.

Conclusions: There was some evidence to support respite having a positive effect on carers but the evidence was limited and weak. It is difficult, therefore, to make recommendations as to the most appropriate form of delivery of respite, apart from the suggestion that a range of services is probably most appropriate, to provide flexibility of respite provision and responsiveness to carer and care recipient characteristics and needs and also changes in those needs over time. There is a need for further high-quality larger trials that include economic evaluations.

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Care Act first-phase reforms: report by the Comptroller and Auditor General

This report considers if the Department of Health is carrying out phase 1 of the Care Act in a way that is likely to achieve the government’s objectives and be value for money. It focuses on the new duties to provide assessments and services to carers, and help for self-funders, examining: the policy, financial and demographic contexts within which the changes are being implemented (Part One); the Department’s arrangements to carry out the Care Act, and local authorities preparation for 2015-16 (Part Two); and funding which the Department has provided to introduce the Care Act in 2015-16 (Part Three). The report estimates that phase 1 of the Act will cost £2.5bn to carry out from 2013-14 to 2019-20, more than half of which is for carers’ assessments and services – a new entitlement and the largest single cost. The report acknowledges that the Department consulted carefully on the Act, to understand the main risks and respond to sector concerns, and that there is wide support for the Act. 

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User and carer involvement in mental health services: from rhetoric to science

User or carer involvement is often seen as intrinsically worth while; but if such involvement is a good thing in itself, it would not matter whether changes resulted from it. However, most people argue for user or carer involvement because they think some useful change will follow as a consequence. Being involved can benefit users or carers both personally (for example, by empowering them or increasing their social contacts) and practically (for example, by enabling them to earn money or learn new skills). Improvements can be made to services as a result of involvement, leading to better relationships between users or carers and staff, and perhaps increased job satisfaction among those working in the service. Targeting services to users' needs may improve the cost-effectiveness of those services.

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Does befriending by trained lay workers improve psychological well-being and quality of life for carers of people with dementia, and at what cost? A randomised controlled trial

Objectives: To determine whether a social support intervention (access to an employed befriending facilitator in addition to usual care) is effective compared with usual care alone. Also to document direct and indirect costs, and establish incremental cost-effectiveness.

Design: The Befriending and Costs of Caring (BECCA) trial was a cost-effectiveness randomised controlled trial. Data on well-being and resource use were collected through interviews with participants at baseline and at 6, 15 and 24 months.

Setting: This research was carried out in the English counties of Norfolk and Suffolk, and the London Borough of Havering. It was a community-based study.

Participants were family carers who were cohabiting with, or providing at least 20 hours' care per week for, a community-dwelling relative with a primary progressive dementia.

Interventions: The intervention was 'access to a befriender facilitator' (BF). BFs, based with charitable/voluntary-sector organisations, were responsible for local befriending schemes, including recruitment, screening, training and ongoing support of befriending volunteers, and for matching carers with befrienders. The role of befrienders was to provide emotional support for carers. The target duration for befriending relationships was 6 months or more.

Main outcome measures: Depression was measured by the Hospital Anxiety and Depression Scale (HADS) at 15 months postrandomisation. The health-related quality of life scale EQ-5D (EuroQol 5 Dimensions) was used to derive utilities for the calculation of quality-adjusted life-years (QALYs).

Results: A total of 236 carers were randomised into the trial (116 intervention; 120 control). At final follow-up, 190 carers (93 intervention; 97 control) were still involved in the trial (19% attrition). There was no evidence of effectiveness or cost-effectiveness from the primary analyses on the intention-to-treat population. The mean incremental cost per incremental QALY gained was in excess of 100,000 pounds, with only a 42.2% probability of being below 30,000 pounds per QALY gained. Where care-recipient QALYs were included, mean incremental cost per incremental QALY gained was 26,848 pounds, with a 51.4% probability of being below 30,000 pounds per QALY gained. Only 60 carers (52%) took up the offer of being matched with a trained lay befriender, and of these only 37 (32%) were befriended for 6 months or more. A subgroup analysis of controls versus those befriended for 6 months or more found a reduction in HADS-depression scores that approached statistical significance (95% CI -0.09 to 2.84).

Conclusions: 'Access to a befriender facilitator' is neither an effective nor a cost-effective intervention in the support of carers of people with dementia, although there is a suggestion of cost-effectiveness for the care dyad (carer and care recipient). In common with many services for carers of people with dementia, uptake of befriending services was not high. However, the small number of carers who engaged with befrienders for 6 months or more reported a reduction in scores on HADS depression that approached statistical significance compared with controls (95% CI -0.09 to 2.84). While providing only weak evidence of any beneficial effect, further research into befriending interventions for carers is warranted.

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The pensions cost of caring

Considers how carers of working age incur pension penalties and the ways in which social security legislation has helped or hindered them in acquiring state pensions. Outlines how paid employment and earnings are related to caring responsibilities, discusses the impact of caring on state and private pensions, and considers how pension policy for the future may affect carers.

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Who cares? Moral obligations in formal and informal care provision in the light of ICT-based home care

An aging population is often taken to require a profound reorganization of the prevailing health care system. In particular, a more cost-effective care system is warranted and ICT-based home care is often considered a promising alternative. Modern health care devices admit a transfer of patients with rather complex care needs from institutions to the home care setting. With care recipients set up with health monitoring technologies at home, spouses and children are likely to become involved in the caring process and informal caregivers may have to assist kin-persons with advanced care needs by means of sophisticated technology. This paper investigates some of the ethical implications of a near-future shift from institutional care to technology-assisted home care and the subsequent impact on the care recipient and formal- and informal care providers. 

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Care time and costs of care for elderly persons with dementia

Aim: List care activities of formal and informal carers and calculate costs of care for elderly people with dementia. Comparison with those not suffering from dementia (control group) at home and in residential settings. Methods: The combined methodology of a retrospective questionnaire and a prospective diary was used to collect individual data on the use of health care (professional and informal care). Results and conclusions: For home care, we found that professional care and costs of materials does not differ in any significant way between the dementia group and the control group. Professional care was on average 5,3 hours/week. However, we did observe a clear difference with regard to the informal care. The recorded time of informal carers was significantly higher for elderly persons with dementia (on average 38 hours/week) than for elderly persons not suffering from dementia (on average 16 hours/week). In residential care facilities, the care time for dementia patients with intensive need of care (Katz score C or Cd) was almost twice that dedicated to dementia patients with slight to moderate need for care (score O, A or B on the Katz scale). However, this latter group did not differ much from the control group (predominantly score O). Therefore we conclude that the care categories indexed by the Katz scale provide, as such, an explanation for the care costs charged in the facilities. The residential setting has a great impact on care provision. The recorded time spent by nurses and carers in home care is more than twice that spent in residential facilities, despite the fact that more intensive care situations are more likely to occur in residential care. This can mainly be attributed to the presence of informal carers who provide a great deal of nursing and care tasks.

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What works well in community care: supporting older people in their own homes and community networks

This paper presents findings from a qualitative study that sought to identify what works well in supporting older people to live in their own homes and local communities. Drawing on data from six focus groups conducted with key stakeholders, including older people, carers, care managers and direct service providers, the shortcomings of existing services to meet the needs of older people are recognised and the paper seeks to move discusion forward to what might help improve provision. Examples identified during the focus groups are explored and highlight the importance of enabling older people to maintain community connections and draw on existing community facilities. To be effective, support needs to be underpinned by a person‐centred approach which takes into account individual preferences and priorities, and is organised locally to where older people live. Statutory organisations are often constrained by restrictive thinking and financial pressures lead to resourcecentred rather than person‐centred responses to individuals in need. Our findings suggest that commissioners of services should be more creative in developing flexible providers in local communities and that we consider approaches that may be helpful in achieving this and transforming support arrangements. The potential of an action research programme to explore the ideas raised and enable processes for development, outcomes for older people, their carers and the communities in which they live, as well as the costs, to be tested comparatively with traditional services is noted. The importance of capacity building and investment in the independent sector and other community partners is critical to achieving change.

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The effectiveness of an Internet support forum for carers of people with dementia: a pre-post cohort study

Background: The well-being of informal carers of people with dementia is an important public health issue. Caring for an elderly relative with dementia may be burdensome and stressful, and can negatively affect the carer’s social, family, and professional life. The combination of loss, the physical demands of caregiving, prolonged distress, and biological vulnerabilities of older carers may compromise their physical health, increase social isolation, and increase the risk of anxiety and depressive disorders. Caregiver stress is also linked to negative outcomes for the recipient of care and costs to society, including increased nursing home and hospital admissions. Consequently, carer support interventions are an important component of dementia care. Computer-mediated carer support offers a range of potential advantages compared to traditional face-to-face support groups, including accessibility and the possibility of tailoring to meet individual needs, but there has been little research on its effectiveness so far.

Objective: This mixed-methods study examined the impact of a well-respected UK-based online support forum for carers of people with dementia.

Methods: A total of 61 new forum users completed measures of anxiety (7-item Generalized Anxiety Disorder scale, GAD-7), depression (9-item Patient Health Questionnaire, PHQ-9), and quality of relationship with the person with dementia (Scale for the Quality of the Current Relationship in Caregiving, SQCRC), at baseline and again after 12 weeks of forum usage, within a pre-post design. In addition, 8 participants were interviewed about their experiences with using the forum.

Results: There was an improvement in the quality of the relationship with the person with dementia (SQCRC: P=.003). There was no change in users’ depression (PHQ-9) or anxiety (GAD-7) over the 12-week study period. Interview participants reported a range of positive experiences and benefits from using the forum. Limited negative experiences were also reported.

Conclusions: Many of the reported experiences and benefits are unique to online peer support. Further research into online peer support for carers of people with dementia is needed to clarify who benefits under what conditions.

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Economic burden of cancer across the European Union: a population-based cost analysis

Background: In 2008, 2·45 million people were diagnosed with cancer and 1·23 million died because of cancer in the 27 countries of the European Union (EU). We aimed to estimate the economic burden of cancer in the EU.

Methods: In a population-based cost analysis, we evaluated the cost of all cancers and also those associated with breast, colorectal, lung, and prostate cancers. We obtained country-specific aggregate data for morbidity, mortality, and health-care resource use from international and national sources. We estimated health-care costs from expenditure on care in the primary, outpatient, emergency, and inpatient settings, and also drugs. Additionally, we estimated the costs of unpaid care provided by relatives or friends of patients (ie, informal care), lost earnings after premature death, and costs associated with individuals who temporarily or permanently left employment because of illness.

Findings: Cancer cost the EU €126 billion in 2009, with health care accounting for €51·0 billion (40%). Across the EU, the health-care costs of cancer were equivalent to €102 per citizen, but varied substantially from €16 per person in Bulgaria to €184 per person in Luxembourg. Productivity losses because of early death cost €42·6 billion and lost working days €9·43 billion. Informal care cost €23·2 billion. Lung cancer had the highest economic cost (€18·8 billion, 15% of overall cancer costs), followed by breast cancer (€15·0 billion, 12%), colorectal cancer (€13·1 billion, 10%), and prostate cancer (€8·43 billion, 7%).

Interpretation: Our results show wide differences between countries, the reasons for which need further investigation. These data contribute to public health and policy intelligence, which is required to deliver affordable cancer care systems and inform effective public research funds allocation.

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Co-production in social care: what it is and how to do it (Guide)

This is a guide to what co-production is and how to develop co-productive approaches to working with people who use services and carers. It is aimed at managers and commissioners, frontline practitioners and people who use services and carers.The first section looks at what co-production is and the principles on which co-productive approaches should be based. It also outlines the policy context, including how co-production relates to the Care Act 2014 and personalisation, the economic impact of co-production. The second section provides guidance on how to put co-production approaches in organisations and projects into action. It makes recommendations on the key changes that organisations need to make to develop co-production approaches structured around a jigsaw model of the management of change. This brings together four important areas of change: culture, structure, practice and review. The guide is based on three sources of evidence: a review of the evidence from 15 studies of co-production that were published in peer-reviewed journals; additional literature identified by SCIE staff and the Project Advisory Group.

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Burden among male caregivers assisting people with multiple sclerosis

Background: Caregiver burden is a multidimensional response to many factors associated with providing assistance to people with multiple sclerosis (MS), including physical, psychological, emotional, and social stressors.

Objective: The aim of this analysis was to identify the characteristics of male informal caregivers, the assistance provided, and the people receiving assistance who were associated with the burden of care.

Methods: Data were collected from a national survey (which included the Mental Component Summary of the SF-8 Health Survey) of informal caregivers and analyzed using an ordered logistic regression model to identify characteristics associated with burden among male informal caregivers.

Results: Greater burden among male caregivers was associated with significantly greater hours per week providing assistance (P = 0.009) and significantly greater restriction on the caregiver's ability to perform daily activities (P < 0.001) due to assisting the person with MS. We found a strong association between the perception of burden and the mental health status of the male caregiver (P < 0.001).

Conclusions: Our findings highlight the strong association of caregiver burden and the Mental Component Summary of the SF-8. Reducing burden may improve the mental health of informal caregivers. Health professionals treating either male caregivers or people with MS should be sensitive to the impact that providing assistance has on the mental health of informal caregivers.

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The impact on the family carer of motor neurone disease and intervention with noninvasive ventilation

Background: The diagnosis of motor neurone disease (MND) has a profound effect on the functioning and well-being of both the patient and their family, with studies describing an increase in carer burden and depression as the disease progresses.

Aim: This study aimed to assess whether patient use of noninvasive ventilation (NIV) impacted on their family carer, and to explore other sources of carer burden.

Design: The study used qualitative interviews and scaled measures of carer health and well-being completed at three monthly intervals until patient end of life.

Participants: Sixteen family carers were followed up over a period ranging from one month to two years.

Results: NIV was perceived as having little impact on carer burden. The data however highlighted a range of sources of other burdens relating to the physical strain of caring. The Medical Outcomes Study Short Form (SF-36 Health Survey) Physical Component Summary (PCS) scores were considerably below that of the Mental Component Summary (MCS) score at baseline and at all following time points. Carers described the physical effort associated with patient care and role change; the challenge inherent in having time away; and problems relating to the timing of equipment and service delivery.

Conclusions: NIV can be recommended to patients without concerns regarding increasing carer burden. The predominant source of burden described related to the physical impact of caring for a patient with MND. Services face challenges if this physical burden is to be reduced by providing equipment at an optimal time and successfully coordinating their input.

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Moving toward Medicare home health coverage for people with Alzheimer’s disease

Medicare home health care policy does not incorporate research evidence of effective palliative home care interventions for Alzheimer's disease and dementia patients and caregivers. This article examines the dissonance between the needs and burdens of Alzheimer's disease patients and caregivers, research results on medical and palliative care interventions, and medicalized public policy in the Medicare home health benefit. The article asserts existing research establishes a prima facie case exists for the federal government to fund a Medicare Palliative Home Care for Alzheimer's disease demonstration project. The article cites the success of the Medicare Hospice Demonstration project and Hospice Medicare Benefit in reducing costs and improving client quality of life as precedent and a model for Alzheimer's disease. Other research implications are identified.

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Dementia: Supporting people with dementia and their carers in health and social care

This guideline covers preventing, diagnosing, assessing and managing dementia in health and social care, and includes recommendations on Alzheimer’s disease. It aims to improve care for people with dementia by promoting accurate diagnosis and the most effective interventions, and improving the organisation of services.

Self-Care Hub in Kirklees

Kirklees Council has taken up the strategic challenge to develop a Self-Care Hub, making the best use of technology to support local citizens living with a variety of long-term health conditions (LTCs). With increasing pressure on budgets and time, some service users with a LTC may see professionals for as little as an hour a year. It is therefore important to facilitate more self-care by service users. But many of them simply can’t do this at present without support, and the Self-Care Hub aims to take the service user further on the journey than they could manage on their own, while still being supported by professionals when appropriate. It aims to shift the balance towards individual responsibility. Supported by Advanced Digital Innovation (UK) Ltd, and through an extensive consultation with potential users, service provider representatives and professional clinicians, Kirklees Council has developed the Self-Care Hub concept into a rich mix of facilities for educating and informing citizens, optimising access to available services, and encouraging and developing the abilities of citizens to take more responsibility to manage their care packages themselves. The service is being developed by a consortium of public health and NHS organisations in West Yorkshire and incorporates live information drawn down from national services such as NHS Choices. The Self-Care Hub is an online resource that helps people assess their own care needs, using an interactive Virtual Assistant to guide them through their options and create their own care plan. It acts as a signpost to information and a portal into health and social services, with the aim of minimising routine and straightforward caseload on professionals such as GPs and A&E where simple information can alleviate people’s needs through self-care. Overcoming trust and perception barriers is important, as is catering for differing levels of confidence, so algorithms ensure that the right questions are asked, using self-compassionate language. Self-assessments can signpost users to tailored options, make an appointment with a Health Trainer, download an app, learn a new skill, or link to a social network. Links to other services in the council, CCG and secondary care complete the all-round provision of the Hub. The goal is to give confidence to people on self-care journeys. Self-care journeys will be measured with evidence-based tools, and users can monitor their own progress; professionals and informal carers will also be able to access metrics where appropriate to assist in the journey. It is expected that over time, professionals will adapt the way they work, building self-care journeys into their workflows, enabling more service-user involvement. The Self-Care Hub may be expanded to offer users holding their own records (PHR), online or video and telephone access to clinicians, and online access to the information held about them on professional systems. The concept and tools could be adapted for use outside Kirklees, potentially both enhancing the business case for further developing the Hub, and reducing the cost of similar provision elsewhere in England. The service goes live from summer 2014.

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Should we embed randomized controlled trials within action research: arguing from a case study of telemonitoring

Background: Action research (AR) and randomized controlled trials (RCTs) are usually considered to be theoretically and practically incompatible. However, we argue that their respective strengths and weaknesses can be complementary. We illustrate our argument from a recent study assessing the effect of telemonitoring on health-related quality of life, self-care, hospital use, costs and the experiences of patients, informal carers and health care professionals in two urban hospital services and one remote rural primary care service in New Zealand.

Methods: Data came from authors’ observations and field notes of discussions with three groups: the healthcare providers and healthcare consumers who participated in the research, and a group of 17 researchers and collaborators. The consumers had heart failure (Site A, urban), airways disease (Site B, urban), and diabetes (Site C, rural). The research ran from 2008 (project inception) until 2012 (project close-off). Researchers came from a wide range of disciplines. Both RCT and AR methods were recognised from early in the process but often worked in parallel rather than together. In retrospect, we have mapped our observed research processes to the AR cycle characteristics (creation of communicative space, democracy and participation, iterative learning and improvement, emergence, and accommodation of different ways of knowing).

Results: We describe the context, conduct and outcomes of the telemonitoring trial, framing the overall process in the language of AR. Although not fully articulated at the time, AR processes made the RCT sensitive to important context, e.g. clinical processes. They resulted in substantive changes to the design and conduct of the RCT, and to interpretation and uptake of findings, e.g. a simpler technology procurement process emerged. Creating a communicative space enabled co-design between the researcher group and collaborators from the provider participant group, and a stronger RCT design.

Conclusions:It appears possible to enhance the utility of RCTs by explicitly embedding them in an AR framework to shape stronger RCT design. The AR process and characteristics may enable researchers to evaluate telehealth while enhancing rather than compromising the quality of an RCT, where research results are returned to practice as part of the research process.

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Telecare. remote monitoring and care

ABSTRACT Telecare is often regarded as a win/win solution to the growing problem of meeting the care needs of an ageing population. In this paper we call attention to some of the ways in which telecare is not a win/win solution but rather aggravates many of the long-standing ethical tensions that surround the care of the elderly. It may reduce the call on carers' time and energy by automating some aspects of care, particularly daily monitoring. This can release carers for other caring activities. On the other hand, remote and impersonal monitoring seems to fall short of providing care. Monitoring may be used to help elderly users retain independence. But it may also increase the amount of information which flows from users to carers, which can result in a form of function-creep that actually undermines independence. [ABSTRACT FROM AUTHOR];Copyright of Bioethics is the property of Wiley-Blackwell and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder

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Changes in sexuality and intimacy after the diagnosis and treatment of cancer: the experience of partners in a sexual relationship with a person with cancer

Changes in sexuality and intimacy after cancer were examined using open-ended questionnaire responses with 156 informal carers who were partners of a person with cancer. Interviews were conducted with 20 participants to examine changes in depth. Seventy-six percent of partners of a person with "nonreproductive" cancer types and 84% of partners caring for a person with cancer involving "reproductive" sites reported an impact on their sexual relationship. Cessation or decreased frequency of sex and intimacy was reported by 59% of the women and 79% of the men. Renegotiation of sexuality and intimacy after cancer was reported by only 19% of the women and 14% of the men. Reasons for changes to sexuality after cancer were the impact of cancer treatments, exhaustion due to caring, and repositioning of the person with cancer as a patient, not a sexual partner. Changes to sexuality were associated with reports of self-blame, rejection, sadness, anger, and lack of sexual fulfillment. Positive consequences of changes included accepting the changed sexual relationship and having increased closeness and intimacy. These findings reinforce the need to acknowledge the sexual needs of partners as well as people with cancer, by healthcare professionals working in cancer and palliative care.

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Family, work and quality of life: changing economic and social roles through the lifecourse

This article reports research funded as part of the recent ESRC Growing Older initiative. The project ‘Family, Work and Quality of Life’ explored changes in economic and social roles across four birth cohorts passing through mid-life (45–59/64 years) in Britain. The relationship between multiple role responsibilities and a range of indicators of quality of life, including material resources, health and engagement in social activities were investigated. The research was based upon secondary analysis of four different surveys: the 2000 British Household Panel Study, the 1994–95 Family and Working Lives Survey, the 1985, 1990, 1995, and 2000 General Household Surveys, and the longitudinal Retirement Survey (1988/89 and 1994). A particularly interesting finding is that being ‘caught in the middle’, in terms of having simultaneous care-giving responsibilities to dependent children and frail parents whilst in paid work, has been atypical. Only one-in-nine British women, and one-in-ten British men, aged 45–49 years (born in 1941–45) occupy all three roles concurrently, but multiple role occupancy is increasing across cohorts, particularly the combination of caring and paid work. Role occupancy significantly affects the accumulation of pension entitlements (particularly second-tier pensions), with the effect that many women who have fulfilled the important social roles of carer and parent will face a low income in old age. Where adverse health outcomes were found, parental role in mid-life was most frequently associated with such poor health, suggesting that continued parental demands in mid-life may have negative health consequences.

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Statistics release: home care services, Scotland 2003

The purpose of this Statistics Release is to present the latest national figures for home care services provided or purchased by local authorities in Scotland. All local authorities in Scotland provide Home Care services which give people the support, practical help and personal care that they need to live as independently as possible in the community.

Original document (pdf) on Scottish Government website.

The effectiveness and cost-effectiveness of support and services to informal carers of older people: a review of the literature prepared for the Audit Commission

This literature review is concerned with the effectiveness and cost-effectiveness of support and services to informal carers of older people in England and Wales. It has been undertaken by the Personal Social Services Research Unit at the request of the Audit Commission (the Commission). The review is divided into three parts. It begins with an introduction summarising key issues that need to be considered when looking at the effectiveness and cost-effectiveness of services for informal carers. This is followed by an examination of the literature on the effectiveness and cost-effectiveness of the different services that may be used, directly or indirectly, to support informal carers. Finally, the third part provides a summary and some conclusions.

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The earnings of informal carers: Wage differentials and opportunity costs

A substantial proportion of working age individuals in Britain are looking after sick, disabled or elderly people, often combining their work and caring responsibilities. Previous research has shown that informal care is linked with substantial opportunity costs for the individual due to forgone wages as a result of non-labour market participation. In this paper we show that informal carers exhibit further disadvantages even when participating. Using the British Household Panel Study (BHPS) we decompose wage differentials and show that carers can expect lower returns for a given set of characteristics, with this wage penalty varying along the pay distribution and by gender. Furthermore, opportunity costs from forgone wages and wage penalties are estimated and found to be substantial. (C) 2007 Elsevier B.V. All rights reserved.

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Costs for patients with psychotic illness: differences depending upon state of remission

BACKGROUND: Psychotic illnesses have a substantial economic burden on patients, family members, friends, and society in general, still there have been limited attempts to estimate the costs associated with this condition. Moreover, nothing is known about the differences in costs between patients depending on disease severity, i.e. state of remission.

AIM: Estimate the direct and indirect costs for a defined patient population with psychotic illness in Sweden, and demonstrate differences in direct costs depending on disease severity (state of remission).

MATERIALS AND METHODS: The cost analyses are based on data from the Clinical Long-term Investigation of Psychosis in Sweden (CLIPS), which is an ongoing, single-centre, epidemiological study. Resource use and disease severity were captured for the patients during one year, 2007. Total costs per patients are estimated and cost differences between patients, depending on state of remission, are considered.

RESULTS: 199 patients with a mean age of 51 (63% men) were followed for 12 months. They had a mean of 6.4 inpatient-days, 1.4 physician visits, 18.6 nurse visits, 1.2 counsellor visits and 6.3 visits to other staff including tests and diagnostic procedures per patient- year. The mean total cost (direct and indirect) amounted to 62,500 per patient and year. Patients in steady state of remission had lower direct costs compared to other patients. Moreover, the size of the various cost items differed between patients' depending on state of remission. Patients in steady remission had almost no inpatient costs.

DISCUSSION: For a comprehensive assessment of treatment of psychotic illnesses it is necessary to provide evidence of the costs related to disease severity. We find that patients suffering from psychotic illness have varying costs depending on their disease severity, and this study indicates that if patients can be kept in remission direct costs will decrease. We can also confirm that reallocation has taken place the last 15 years, between different cost items, from in-patient care at hospitals to out-patient care and assistance at home.

LIMITATIONS: Information about informal care was collected from patients and not from informal carers themselves.

IMPLICATIONS FOR HEALTH CARE PROVISION AND USE: Costs have been reallocated from in-patient care to costs for assistance at home, which is a reflection of the change in care of patients with mental problems that has taken place during the last 15 years. Patients in steady remission have lower costs compared to patients in steady non-remission or patients switching between the two states. A better surveillance of the disorder would lead to lower direct, as well as indirect, costs.

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Socioeconomic factors associated with trajectories of caring by young and mid-aged women: a cohort study

Background: The health and socioeconomic outcomes from being a caregiver are well described. In contrast, the long-term trajectories of caring undertaken by women, and the demographic, socioeconomic status, health status and health behaviour characteristics associated with these trajectories is not well known.

Methods: The data were from the Australian Longitudinal Study on Women’s Health. Participants were 14,202 women born 1973–78 followed for 13 years, and 12,282 women born 1946–1951 followed for 9 years. Latent class analyses and multinomial logistic regression were used.

Results: Five distinct trajectories of caring were identified for the younger women: these represented ‘ongoing’, ‘starting’, ‘never’ and 2 types of ‘transitional’ caring. While traditional indicators of poorer socioeconomic status were associated with trajectories representing ‘ongoing’ and ‘starting’ caring, they were not associated with ‘transitional’ caring trajectories. Three distinct trajectories of caring were identified for the mid-age women: these represented ‘ongoing’, ‘starting’ and ‘never’ caring. For the mid-age women, poorer socioeconomic status indicators were associated with the ‘ongoing’ caring, but not ’starting’ caring.

Conclusions: Women in the 1973–78 cohort showed more varying and transitional caring trajectories compared to those in the 1946–51 cohort, and these trajectories were not associated with traditional socioeconomic indicators. An ‘opportunity cost’ theory for who become carers does not support young transitional carers or mid-aged women beginning new caring. Health policies, education and awareness campaigns for women carers need to target outside previously identified populations.

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Funding chief rules out free care

The article reports that Andrew Dilnot, chairman of the Commission on Funding of Care and Support, has ruled out having free personal care in England. He states that free personal care will not be recommended by the commission as it will not be resilient enough if implemented. He mentions that the commission will put forward the suggestion of having partnership approach which would combine resources from state, informal carers and individuals.

(Source Info: 3/10/2011, Issue 1856, p9; Subject Term: NATIONAL health services; Subject Term: NATIONAL health services -- Law & legislation; Subject Term: MEDICAL care costs; Subject Term: MEDICAL care; Subject Term: ECONOMIC aspects; Subject Term: LAW & legislation; Subject Term: GREAT Britain; Number of Pages: 1/2p; Document Type: Article; Full Text Word Count: 493)

P-443 - Social inclusion for the mental health of informal caregivers of Alzheimer disease's patients: The role of reemployment strategies of socially excluded

Alzheimer's disease (AD) is one of the leading causes of dependency among older adults and of institutionalization in Europe. The number of people with AD is estimated in 10 million people and the cost of the disease has been recently estimated in 100.000 million of euros per year in the European Union (European Brain Council, 2011). There is nowadays no effective treatment of the disease. Currently, care of AD patients is primary sustained by informal caregivers who suffer burden as a result of their care responsibilities, and consequently are mainly affected by mental health problems (depression, anxiety, etc). This burden is also related with a premature institutionalization and violence against AD patients. In this sense, effective solutions are needed in order to fight against the mental health problems of informal caregivers. Regarding this, a social innovation research, funded by the Progress Programme of the DG of Employment, Social Affairs and Inclusion of the European Commission, is being developed currently in France and Spain, where the authors are aimed to demonstrate how a specialized formal training in AD addressed to people in risk of labour and social exclusion could improve the quality of life of AD patients and reduce the informal caregiver burden. The results of this research is specially relevant to help to reduce mental health problems of the informal carers of AD patients, but also in terms of intervene on the cognitive skills of the persons affected, as well as to allow the employment of socially excluded people.

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Burden on family carers and care-related financial strain at the end of life: a cross-national population-based study

Background: The rising number of deaths from cancer and other life-limiting illnesses is accompanied by a growing number of family carers who provide long-lasting care, including end-of-life care. This population-based epidemiological study aimed to describe and compare in four European countries the prevalence of and factors associated with physical or emotional overburden and difficulties in covering care-related costs among family carers of people at the end of life.

Methods: A cross-national retrospective study was conducted via nationwide representative sentinel networks of general practitioners (GPs). Using a standardized form, GPs in Belgium, The Netherlands, Italy and Spain recorded information on the last 3 months of life of every deceased adult practice patient (1 January 2009–31 December 2010). Sudden deaths were excluded.

Results: We studied 4466 deaths. GPs judged family carers of 28% (Belgium), 30% (The Netherlands), 35% (Spain) and 71% (Italy) of patients as physically/emotionally overburdened (P < 0.001). For 8% (Spain), 14% (Belgium), 36% (The Netherlands) and 43% (Italy) patients, GPs reported difficulties in covering care-related costs (P < 0.001). Patients <85 years of age (Belgium, Italy) had higher odds of having physically/emotionally overburdened family carers and financial burden. Death from non-malignant illness (vs. cancer) (Belgium and Italy) and dying at home compared with other locations (The Netherlands and Italy) were associated with higher odds of difficulties in covering care-related costs.

Conclusion: In all countries studied, and particularly in Italy, GPs observed a considerable extent of physical/emotional overburden as well as difficulties in covering care-related costs among family carers of people at the end of life. Implications for health- and social care policies are discussed.

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Putting people first without putting carers second

Personalisation is now the driving agenda for adult social care and Putting People First recognises that increasing numbers of ordinary people will be called upon to contribute to care delivered in people’s own homes. Of the UK's six million carers, 1.3 million are already caring, unpaid, for over 50 hours a week. Carers have always wanted better outcomes for the people they care for. However, with many carers suffering poverty, ill health and isolation due to unsustainably heavy caring roles, they also want and deserve better outcomes for themselves. This Report has been produced by The Princess Royal Trust for Carers and Crossroads Caring for Carers, with support from the Local Government Association, NHS Confederation, The Improvement and Development Agency and the Association of Directors of Adult Social Services (ADASS). It examines the challenges local councils and health trusts face in making personalisation a reality for carers alongside those they care for. It also highlights a range of solutions that ar e already in place to meet those challenges, often involving inspirational partnerships between Third Sector carers’ services and innovative commissioners within councils and the NHS

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Who pays and who benefits? How different models of shared responsibilities between formal and informal carers influence projections of costs of dementia management

Background: The few studies that have attempted to estimate the future cost of caring for people with dementia in Australia are typically based on total prevalence and the cost per patient over the average duration of illness. However, costs associated with dementia care also vary according to the length of the disease, severity of symptoms and type of care provided. This study aimed to determine more accurately the future costs of dementia management by taking these factors into consideration. Methods: The current study estimated the prevalence of dementia in Australia (2010-2040). Data from a variety of sources was recalculated to distribute this prevalence according to the location (home/institution), care requirements (informal/formal), and dementia severity. The cost of care was attributed to redistributed prevalences and used in prediction of future costs of dementia. Results: Our computer modeling indicates that the ratio between the prevalence of people with mild/moderate/severe dementia will change over the three decades from 2010 to 2040 from 50/30/20 to 44/32/24.Taking into account the severity of symptoms, location of care and cost of care per hour, the current study estimates that the informal cost of care in 2010 is AU$3.2 billion and formal care at AU$5.0 billion per annum. By 2040 informal care is estimated to cost AU$11.6 billion and formal care $AU16.7 billion per annum. Interventions to slow disease progression will result in relative savings of 5% (AU$1.5 billion) per annum and interventions to delay disease onset will result in relative savings of 14% (AU$4 billion) of the cost per annum.With no intervention, the projected combined annual cost of formal and informal care for a person with dementia in 2040 will be around AU$38,000 (in 2010 dollars). An intervention to delay progression by 2 years will see this reduced to AU$35,000. Conclusions: These findings highlight the need to account for more than total prevalence when estimating the costs of dementia care. While the absolute values of cost of care estimates are subject to the validity and reliability of currently available data, dynamic systems modeling allows for future trends to be estimated.

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