Informal Care Costs Research Articles

PREDICTIONS FOR DEMENTIA BURDEN IN CHINA BY 2050 AND LONG-TERM CARE INSURANCE POLICY

Abstract This study projected the socioeconomic cost and quality adjusted life years (QALYs) lost to dementia in China from 2020 to 2050, and tested robustness of these projections. Using a multi-state Markov model, we projected the number of dementia cases and other health states in China to 2050. Corresponding socioeconomic costs (healthcare, formal care and informal care costs) and QALYs of these health states were forecasted based on China Health and Retirement Longitudinal Study (N=25029) and Chinese Longitudinal Healthy Longevity Survey (N=32628). A series of sensitivity analyses were conducted to test robustness of projections depending on different assumptions. We showed that nearly 2.7% of the age 50+ population had dementia in China in 2020, and the share of total socioeconomic cost per year was 12.2% for those with dementia. Socioeconomic cost and cost of QALYs lost to dementia in 2050 would reach 1189.0 and 807.4 billion US$ respectively. The dominant contributor to socioeconomic costs was informal care costs, while formal care costs covered the smallest share. Furthermore, sensitivity analyses showed that changes to formal care usage would lead to more robust changes in socioeconomic cost of dementia than the unit price of social care. Projected cost would decrease by 13.9% or increase by 34.5% in 2050, depending on different assumptions of time trend of dementia incidence. The socioeconomic cost and cost of QALYs lost to dementia in China are expected to continue their rapid growth into future, with informal care costs being the most significant contributor.

THE BURDEN OF COGNITIVE IMPAIRMENT

Abstract Over 10% of American seniors (age≥65) experience cognitive impairment (CI) related to Alzheimer’s disease and related dementias (ADRD). An additional 15-22% experience mild cognitive impartment (MCI), which often precedes ADRD and occurs earlier in life. However, CI burden estimates inclusive of MCI and early CI onset (age< 65) are limited. Using microsimulation, we estimated the burden of CI (ADRD and/or MCI) over remaining life years above 50 overall and by disease progression, age of onset, and sociodemographic subgroups for a nationally representative sample of Americans (age≥50) with cognitive status information in the Health and Retirement Study (2000-2016). The per capita lifetime CI burden was $124K (95%CI:$101K-$148K) due to $162K (95%CI:$139K-$185K) and $6.40K (95%CI:$5.03K-$7.77K) in lost Quality Adjusted Life Years (QALYs) and earnings, respectively, and $4.07K (95%CI:$1.82K-$6.33K) in informal care costs, offset by $48.6K (95%CI: $42.4K-$54.8K) in lower medical expenditures. The aggregate CI burden was $627B (95%CI: $511B–$743B): 59% due to ADRD and 41% to MCI. Individuals with MCI without progression to ADRD lost healthy life years valued at $119K (95%CI:$99K-$139K). Those with early CI onset were more likely to be from disadvantaged populations and carried the largest per capita burden [$376K (95% CI: $315K-$436K)] cumulating to 60% on aggregate, nearly half of which experienced during MCI. Individuals with lower education, progression to ADRD, or racial/ethnic minorities also carried disproportionate burden. MCI represents 41% of the overall CI burden and disproportionately affects individuals with early CI onset. Characterizing CI-related health and economic disparities at milder stages and younger ages should be prioritized.

Projected costs of informal care for older people in England

BackgroundHealth economics research and economic evaluation have increasingly taken a societal perspective, accounting for the economic impacts of informal care. Projected economic costs of informal care help researchers and policymakers understand better the long-term consequences of policy reforms and health interventions. This study makes projections of the economic costs of informal care for older people in England.MethodsData come from two national surveys: the English Longitudinal Study of Ageing (ELSA, N = 35,425) and the Health Survey for England (N = 17,292). We combine a Markov model with a macrosimulation model to make the projections. We explore a range of assumptions about future demographic and epidemiological trends to capture model uncertainty and take a Bayesian approach to capture parameter uncertainty.ResultsWe estimate that the economic costs of informal care were £54.2 billion in 2019, three times larger than the expenditure on formal long-term care. Those costs are projected to rise by 87% by 2039, faster than public expenditure but slower than private expenditure on formal long-term care. These results are sensitive to assumptions about future life expectancy, fertility rates, and progression of disabilities in the population.ConclusionsPrevention schemes aiming to promote healthy aging and independence will be important to alleviate the costs of informal care. The government should strengthen support for informal caregivers and care recipients to ensure the adequacy of care, protect the well-being of caregivers, and prevent the costs of informal care from spilling over to other sectors of the economy.

Cost of informal dementia care by US state, 2010‐2019

AbstractBackgroundThere are significant costs associated with dementia care throughout the world. These are expected to rise as populations age. Informal (unpaid) care represents a large fraction of these costs, although it is challenging to measure. In the United States, estimates of the cost of informal dementia care are dated and measured only at the national level. To fill this gap, we estimated the cost of informal care attributable to dementia through 2019 for each US state.MethodThe value of informal care is estimated as the replacement cost (cost of an equivalent number of hours of paid care) and opportunity cost (expected cost of forgone wages of the caregivers). We combine data from the Behavioral Risk Factor Surveillance System, the National Health and Aging Trends Study (NHATS), and the Health and Retirement Study to estimate caregiving hours at the state level from 2010‐2019. NHATS data are used to estimate the fraction of caregiving hours attributable to dementia.ResultIn 2019, the average annual per‐patient cost of informal care attributable to dementia was $42,271 ($37,338‐$47,898) using the replacement cost method and $19,769 ($15,711‐$25,029) using the opportunity cost method. These estimates imply a national cost of $207.2B ($183.1B‐$234.8B) or $96.9B ($77.0B‐$122.7B) per year, respectively. State‐level estimates show significant variation in informal caregiving hours per prevalent case of dementia. In 2019, the annual replacement cost of informal care provided per patient ranged from $15,885 ($13,941 ‐$17,979) in Nebraska to $71,438 ($63,155 ‐$80,316) in New Mexico. The opportunity cost had a larger spread in relative terms, ranging from $6,653 ($5,233‐$8,417) in Nebraska to $36,831 ($29,071‐$46,833) in Missouri. Co‐occurrence of diabetes mellitus prevalence is associated with more informal care hours for the average adult living with dementia, while average years of education of the caregiver is associated with fewer informal care hours.ConclusionThe hours spent on informal care per prevalent case of dementia vary dramatically by state. This work adds to our understanding of health and demographic factors that are associated with hours of informal care, which can help policymakers plan for future increases in dementia prevalence and assess policy to support caregivers.

A Literature Review on the Burden of Alzheimer's Disease on Care Partners.

Many individuals with Alzheimer's disease (AD) are dependent on nonprofessional care partners. Providing informal care can result in emotional, physical, and financial burdens; however, there is a need for a better understanding of the impact of AD on care partners to support the clinical and economic assessment of potential new treatments. We conducted a literature review to evaluate the burden experienced by care partners of individuals with AD. Electronic screening and supplementary searches identified studies published from 2011 to 2022 describing the association between AD and the quality of life (QoL) and physical health of care partners, and the economic or financial burden of AD. Following electronic screening, 62, 25, and 39 studies were included on care partner burden, cost, and healthcare resource use in AD, respectively. Supplementary searches identified an additional 32 studies, resulting in 149 unique studies. These studies showed that care partners of individuals with AD report moderate to severe burden. Higher burden and lower QoL were observed in those caring for individuals with more severe AD. Care partners of individuals with AD experience higher burden, lower QoL, and higher levels of stress, depression, and anxiety than those without caring responsibilities. Informal care costs increased with AD severity and accounted for the greatest proportion of overall societal cost. Care partners of individuals with AD experience emotional and economic burden, which increases with AD severity. These impacts should be quantified comprehensively in future studies and captured in economic evaluations of AD interventions.

Cost of Patients with Alzheimer's Disease in Spain According to Disease Severity.

Alzheimer's disease (AD) has been associated with great healthcare and non-healthcare resource consumption. The aim of this study was to estimate the burden of AD in Spain according to disease severity from a societal perspective. A self-administered questionnaire was designed by the researchers and completed by the informal caregivers of patients with AD, reporting data on themselves as caregivers and on the AD patients for whom they care. The patients' sociodemographic and clinical data, their healthcare and non-healthcare resource consumption in the previous 12 months, and the impact of the disease on labor productivity were compiled. Data collected on informal caregivers included sociodemographic data and the impact of caring for a person with AD on their quality of life and labor productivity. Costs were estimated by multiplying the number of consumed resources by their unit prices. The cost of informal care was assessed using the proxy good method, and labor productivity losses were estimated using the human capital method. Costs were estimated by disease severity and are presented per patient per year in 2021 euros (€). The study sample comprised 171 patients with AD aged 79.1 ± 7.4 years; 68.8% were female, time from diagnosis was 5.8 ± 4.1 years, diagnosis delay was 1.8 ± 2.3 years, and the mean Cumulative Illness Rating Scale-Geriatric (CIRS-G) total was score 8.2 ± 6.0. According to disease severity, 14% had mild cognitive impairment or mild AD, 43.9% moderate AD, and 42.1% severe AD. The average annual cost per patient was €42,336.4 in the most conservative scenario. The greatest proportion of this cost was attributed to direct non-healthcare costs (86%, €36,364.8), followed by direct healthcare costs (8.6%, €3647.1), social care costs (4.6%, €1957.1), and labor productivity losses (less than 1%, €367.4). Informal care was the highest cost item, representing 80% of direct non-healthcare costs and 69% of the total cost. The total direct non-healthcare cost and total cost were significantly higher in moderate to severe disease severities, compared to milder disease severity. AD poses a substantial burden on informal caregivers, the national healthcare system, and society at large. Early diagnosis and treatment to prevent disease progression could reduce this economic impact.

Cost of illness in inclusion body myositis: results from a cross-sectional study in Germany

BackgroundInclusion body myositis (IBM) is the most frequent type of myositis in elder patients with a slow chronic progression and refractory to treatment. Previous cost of illness (COI) studies in IBM used claims data to estimate direct costs in the US. No evidence exists globally on both direct and indirect costs in IBM from a societal perspective. We conducted a survey in patients registered in the German IBM patient registry. Self-developed items were used to assess the utilized healthcare resources and estimate the cost. The German Self-Administered Comorbidity Questionnaire (SCQ-D), the sIBM Physical Functioning Assessment (sIFA) and patient-reported measures for satisfaction and improvements in healthcare were applied for an explorative analysis.ResultsIn total, 82 patients completed the survey. We estimated the mean total annual per capita COI of US$102,682 (95% CI US$82,763–US$123,090) in 2021. 92.7% of the total COI were direct costs. Medical costs were similar to nonmedical costs, with substantial costs for pharmacotherapy and informal care. Depending on the prevalence estimate, the total national COI per year were US$42.7 million–US$213.7 million. Significant differences in total COI were identified for the degree of disability, marital and employment status (p < 0.05).ConclusionsWe identified remarkable and heterogenous cost in IBM. As informal care costs represented the most relevant cost driver, caregiver burden is a major factor in the patient journey. For the first time, comprehensive economic potentials were identified as a basis to improve the actual care situations and prioritizing future activities for research, pharmaceutical and digital product development as well as health politics.

The Cost and the Value of Stroke Care in Greece: Results from the SUN4P Study.

The aim of this study was to measure the one-year total cost of strokes and to investigate the value of stroke care, defined as cost per QALY. The study population included 892 patients with first-ever acute strokes, hemorrhagic strokes, and ischemic strokes, (ICD-10 codes: I61, I63, and I64) admitted within 48 h of symptoms onset to nine public hospitals located in six cities. We conducted a bottom-up cost analysis from the societal point of view. All cost components including direct medical costs, productivity losses due to morbidity and mortality, and informal care costs were considered. We used an annual time horizon, including all costs for 2021, irrespective of the time of disease onset. The average cost (direct and indirect) was extrapolated in order to estimate the national annual burden associated with stroke. We estimated the total cost of stroke in Greece at EUR 343.1 mil. a year in 2021, (EUR 10,722/patient or EUR 23,308 per QALY). Out of EUR 343.1 mil., 53.3% (EUR 182.9 mil.) consisted of direct healthcare costs, representing 1.1% of current health expenditure in 2021. Overall, productivity losses were calculated at EUR 160.2 mil. The mean productivity losses were estimated to be 116 work days with 55.1 days lost due to premature retirement and absenteeism from work, 18.5 days lost due to mortality, and 42.4 days lost due to informal caregiving by family members. This study highlights the burden of stroke and underlines the need for stakeholders and policymakers to re-organize stroke care and promote interventions that have been proven cost-effective.

Economic burden of cardiovascular diseases in the European Union: a population-based cost study.

Cardiovascular disease (CVD) impacts significantly health and social care systems as well as society through premature mortality and disability, with patients requiring care from relatives. Previous pan-European estimates of the economic burden of CVD are now outdated. This study aims to provide novel, up-to-date evidence on the economic burden across the 27 European Union (EU) countries in 2021. Aggregate country-specific resource use data on morbidity, mortality, and health, social and informal care were obtained from international sources, such as the Statistical Office of the European Communities, enhanced by data from the European Society of Cardiology Atlas programme and patient-level data from the Survey of Health, Ageing and Retirement in Europe. Country-specific unit costs were used, with cost estimates reported on a per capita basis, after adjustment for price differentials. CVD is estimated to cost the EU €282 billion annually, with health and long-term care accounting for €155 billion (55%), equalling 11% of EU-health expenditure. Productivity losses accounted for 17% (€48 billion), whereas informal care costs were €79 billion (28%). CVD represented a cost of €630 per person, ranging from €381 in Cyprus to €903 in Germany. Coronary heart disease accounted for 27% (€77 billion) and cerebrovascular diseases for 27% (€76 billion) of CVD costs. This study provides contemporary estimates of the wide-ranging impact of CVD on all aspects of the economy. The data help inform evidence-based policies to reduce the impact of CVD, promoting care access and better health outcomes and economic sustainability.

Share of and Absolute Costs of Informal Care in Five Subpopulations of Outpatients with Dementia in Croatia: A Latent Profile Analysis.

High heterogeneity exists in estimates of the share of and absolute costs of informal care (IC) for individuals diagnosed with dementia. To assess the differences in the share of and absolute costs of IC between subpopulations defined by latent profiles of activities of daily living (ADLs), neuropsychiatric symptoms, and global cognitive functioning. We performed a nested cross-sectional analysis of data collected from 2019-2021 at the Zagreb-Zapad Health Center, Zagreb, Croatia, from a sample of patients and their caregivers. The outcome was the share of costs of IC in the total costs of care estimated using the Resource Utilization in Dementia questionnaire. We used latent profile analysis of six principal components of the Alzheimer's Disease Cooperative Study ADLs inventory, Neuropsychiatric Inventory and Mini-Mental State Examination, and conducted the analysis using beta and quantile regression. We enrolled 240 patients with a median age of 74 years; 78% were women. The annual cost for treatment and care for one patient was 11,462 (95% confidence interval 9,947; 12,976) EUR. After the adjustment for covariates, five latent profiles were significantly associated with the share of costs and absolute cost of IC. The adjusted annual costs of IC ranged from 2,157 EUR, with a share of 53% in the first latent profile, to 18,119 EUR, with a share of 78% in the fifth latent profile. The population of patients with dementia was heterogeneous, and there were relatively large differences in the share and absolute costs of IC between particular subpopulations.

Health Care Resource Use and Social Costs in Mild Cognitive Impairment and Mild Alzheimer's Disease.

As the number of patients with dementia increases, so do the social costs. In recent years, attempts have been made to reduce risk to be dementia and treat it from the early stages of the disease, making it important to estimate the costs of the early stages. To estimate the medical and social costs of the early stages of Alzheimer's disease (AD), which include mild cognitive impairment (MCI) due to AD and mild AD. Questionnaires were used to obtain basic information (e.g., age, cognitive function) and medical costs, social care costs, family caregiver medical costs, and family caregiver informal care costs from patients with MCI due to AD or mild AD who were attending a memory clinic. A comparison was then conducted between these two groups. Patients with mild AD had higher total costs, patient medical costs, patient social care costs, and family caregiver informal care costs than did patients with MCI; however, only patient medical costs were significantly different (p = 0.022). A detailed analysis of patient medical costs revealed that anti-dementia drug treatment costs were significantly higher in patients with mild AD (p < 0.001). Compared with patients with mild AD, those with MCI may have lower patient and family caregiver costs. As it is important to reduce social costs through risk reduction and therapeutic interventions from the early stages of AD, the present findings could help estimate the social costs and verify the cost-effectiveness of early interventions for AD.

Comprehensive cost of illness of all diseases in Japan: Measurement of the social burden of diseases in a super-aged society

BackgroundEvaluation of the social burden of illness is important for policy decision-making. However, policy-makers find indicators traditionally used in the healthcare field difficult to use because calculation of these indicators is complex and the unit of indicators is often expressed on “years” basis. The aim of this study was to measure the burden of all diseases using the Comprehensive Cost of Illness (CCOI) method and to provide indicators that are easy to use for policy-making. MethodsUtilizing government-based nationwide statistical data, we used the CCOI method to estimate the social burden of illness from 2002 to 2017. CCOI consists of direct costs (medical direct cost and formal care cost) and indirect costs (morbidity cost, mortality cost, and informal care cost). ResultsFrom 2002 to 2017, CCOI increased from 66.5 trillion yen (12.9% of the gross domestic product [GDP]) to 90.6 trillion yen (16.6% of GDP). From 2002 to 2017, the three top-ranked diseases influencing CCOI did not change. The ranking of these diseases (from first to third) is as follows: circulatory system diseases, neoplasms, and digestive diseases. ConclusionsThe trend of CCOI is consistent with the trends of national health expenditure and disability-adjusted life years. The CCOI method is expressed in monetary terms, so the effects of aging and the development of medical technology are represented by trends in each cost and are considered valuable as the basis of health policy, instead of national health expenditure. Public Interest SummaryMeasuring the social burden of disease is important for making policy decisions. There have been indicators to measure the burden of disease in the past, but they have been complex and difficult to use because they are measured in "years". We have developed a comprehensive cost-of-illness method (CCOI) that includes the burden of long-term care by applying a method called the cost-of-illness method (COI), which expresses the burden of illness in monetary terms. Using this method, we measured the cost of illness in Japan's aging population, which in 2017 was 66.5 trillion yen (approximately US$532 billion), accounting for 12.9% of GDP. Since this method expresses the burden in monetary terms, it is expected to be a useful indicator for policy making.

Hours and costs of formal and informal care following Traumatic Brain Injury and Spinal Cord Injury sustained through Motor Vehicle Accidents: A Cross-sectional Study.

To explore the weekly utilization of formal and informal care, and to calculate and compare the costs associated with these types of care after traumatic brain injury or spinal cord injury sustained through a motor vehicle accident in Australia. Cross-sectional, quantitative design. A total of 81 people with traumatic brain injury and 30 people with spinal cord injury from 3 rehabilitation units in New South Wales, Australia. Data were collected using questionnaires administered through semi-structured interviews, and analysed using a series of Kruskal-Wallis tests. Spinal cord injury (tetraplegia/ paraplegia) was significantly more expensive for both formal and informal care compared with traumatic brain injury. The costs of formal care were significantly greater for those in the traumatic brain injury group who had a more severe injury (post-traumatic amnesia > 90 days) compared with the other traumatic brain injury groups (post-traumatic amnesia 7-28 days, 29-90 days). The costs of informal care were significantly higher for both traumatic brain injury and spinal cord injury compared with the costs of formal care. This study highlights the complementary role of formal and informal care in supporting people with traumatic brain injury or spinal cord injury, particularly highlighting the significant role of informal care, which needs to be more explicitly acknowledged in policy and planning processes.

Development and Economic Evaluation of a Patient-Centered Care Model for Children With Duchenne Muscular Dystrophy: Protocol for a Quasi-Experimental Study.

Duchenne muscular dystrophy (DMD) is a rare progressive muscular disease that primarily affects boys. A lack of comprehensive care for patients living with DMD is directly associated with a compromised quality of life (QoL) for those affected and their caregivers. This disease also has a huge economic impact on families as its treatment requires substantial direct, indirect, and informal care costs. This study presents a protocol developed to evaluate the feasibility and efficacy of a patient-centered care (PCC) model for children with DMD. The care model was designed with the aim to empower families, improve QoL, and reduce economic burden on their families. This study is planned as a quasi-experimental study that will enroll 70 consecutive families with boys (aged 5-15 years) with DMD visiting a tertiary care center. The study is being conducted in 2 phases (preintervention and postintervention phases, referred to as phase 1 and phase 2, respectively). During phase 1, the patients received routine care. The study is now in phase 2, with the intervention currently being administered. The intervention is based on the PCC model individualized by the intervention team. The model has a comprehensive DMD telecare component that includes teleconsultation as one of its key components to reduce in-person physician visits at the health facility. Teleconsultation is especially beneficial for late-ambulatory and nonambulatory patients. Data on economic burden are being collected for out-of-pocket expenses for both phases during in-person visits via telephone or messaging apps on a monthly basis. QoL data for patients and their primary caregivers are being collected at 3 time points (ie, time of enrollment, end of phase 1, and end of phase 2). Outcome measures are being assessed as changes in economic burden on families and changes in QoL scores. Participant recruitment began in July 2021. The study is ongoing and expected to be completed by March 2023. The findings based on baseline data are expected to be submitted for publication in 2023. This paper outlines a research proposal developed to study the impact of a PCC model for patients with DMD in low- and middle-income countries (LMICs). This study is expected to provide evidence of whether a multicomponent, patient-centric intervention could reduce economic burdens on families and improve their QoL. The results of this study could guide policy makers and health professionals in India and other LMICs to facilitate a comprehensive care program for patients living with DMD. The economic impact of a rare disease is an important consideration to formulate or evaluate any health policy or intervention related to new treatments and financial support schemes. Clinical Trials Registry India (ICMR-NIMS) CTRI/2021/06/034274; https://www.ctri.nic.in/Clinicaltrials/pmaindet2.php?trialid=56650. PRR1-10.2196/42491.

Caregiver Burden and Quality of Life Across Alzheimer's Disease Severity Stages.

The objective is to estimate the caregiver burden in terms of informal care time, health-related quality of life (HRQoL), and societal costs by disease severity (mild, moderate, or severe) and living situation (community-dwelling or institutionalized) of persons with AD (PwAD); and PwAD HRQoL. Caregivers were recruited through an online panel provider in the Netherlands. The survey used validated instruments, including iMTA Valuation of Informal Care Questionnaire, CarerQoL, and EQ-5D-5L. One hundred two caregivers participated. PwADs received, on average, 26 hours of informal care per week. Informal care costs were higher for community-dwelling PwADs compared with institutionalized PwADs (€480 and €278, respectively). On the EQ-5D-5L, caregivers scored on average 0.797, reflecting a utility decrement of 0.065 compared with an age-matched population. Proxy-rated utility scores for PwADs decreased with increasing disease severity (0.455, 0.314, and 0.212 for mild, moderate, and severe AD, respectively). Institutionalised PwADs had lower utility scores than community-dwelling PwADs (0.590 vs. 0.421). There was no difference in informal care time, societal costs, CarerQol scores, and caregiver EQ-5D-5L scores between disease severities. The burden of AD extends to caregivers in terms of HRQoL and time investment, regardless of the disease severity of the target population. These impacts should be incorporated into the evaluation of new AD interventions.

Informal Care Costs According to Age and Proximity to Death to Support Cost-Effectiveness Analyses.

Costs of informal care are ignored in many cost-effectiveness analyses (CEAs) conducted from a societal perspective; however, these costs are relevant for lifesaving interventions targeted at the older population. In this study, we estimated informal care costs by age and proximity to death across European regions and showed how these estimates can be included in CEAs. We estimated informal care costs by age and proximity to death using generalised linear mixed-effects models. For this, we selected deceased singles from the Survey of Health, Ageing and Retirement, which we grouped by four European regions. We combined the estimates of informal care costs with life tables to illustrate the impact of including informal care costs on the incremental cost-effectiveness ratio (ICER) of a hypothetical intervention that prevents a death at different ages. Informal care use, and hence informal care costs, increase when approaching death and with increasing age. The impact of including informal care costs on the ICER varies between €200 and €17,700 per quality-adjusted life-year gained. The impact increases with age and is stronger for women and in southern European countries. Our estimates of informal carecosts facilitate including informal care costs in CEAs of life-extending healthcare interventions. Including these costs may influence decisions as it leads to reranking of life-extending interventions compared with interventions improving quality of life.

Social burden of three major diseases in Japan: A time trend and future projections using the comprehensive cost of illness method.

Three major diseases in Japan, cancer, heart disease, and cerebrovascular disease (CVD) are the leading causes of death in Japan. This study aimed to clarify the social burden of these diseases, including long-term care (LTC), and to predict future trends. The comprehensive cost of illness (C-COI), a modification of the cost of illness (COI), was used to estimate the social burden of the three major diseases in Japan. The C-COI can macroscopically estimate both direct and indirect costs, including the LTC. A new method for future projections of the C-COI was developed according to the method for future projections of the COI. All data sources were government statistics. The C-COI of cancer, heart diseases, and CVD in 2017 amounted to 11.0 trillion JPY, 5.3 trillion JPY, and 6.5 trillion JPY, respectively. The projected future C-COI in 2029 was 10.3 trillion JPY, 5.3 trillion JPY, and 4.4 trillion JPY, respectively. In 2029, the LTC costs accounted for 4.4%, 12.8%, and 44.1% of the total C-COI, respectively. Informal care costs are projected to be approximately 1.7 times higher, assuming that all family caregivers will be replaced by professional caregivers in 2029. Indirect costs for all three diseases were projected to decrease owing to aging of the patient. In contrast to the other two diseases, the LTC cost of CVD accounted for a large proportion of the burden. The burden of CVD is expected to decrease in the future, but informal care by older family caregivers is suggested to reach its limits. In the future, the focus of resource allocation should shift from medical care to LTC, especially support for family caregivers. A method of future projections for the social burden based on the C-COI was considered effective for identifying issues for healthcare policy in the context of the times.

The worldwide costs of dementia in 2019.

Dementia is a leading cause of death and disability globally. Estimating total societal costs demonstrates the wide impact of dementia and its main direct and indirect economic components. We constructed a global cost model for dementia, presenting costs as cumulated global and regional costs. In 2019, the annual global societal costs of dementia were estimated at US $1313.4 billion for 55.2 million people with dementia, corresponding to US $23,796 per person with dementia. Of the total, US $213.2 billion (16%) were direct medical costs, US $448.7 billion (34%) direct social sector costs (including long-term care), and US $651.4 billion (50%) costs of informal care. The huge costs of dementia worldwide place enormous strains on care systems and families alike. Although most people with dementia live in low- and middle-income countries, highest total and per-person costs are seen in high-income countries. Globaleconomiccosts of dementiawere estimated to reach US $1313.4 in 2019. Sixty-one percent of people with dementia live in low-and middle-income countries, whereas 74% of the costs occur in high-income countries. The impact of informal careaccounts forabout 50% of the global costs. The development of a long-term care infrastructure is a great challenge for low-and middle-income countries. There is a great need for more cost studies, particularly in low- and middle-income countries. Discussions of a framework for global cost comparisons are needed.

Making visible the cost of informal caregivers’ time in Latin America: a case study for major cardiovascular, cancer and respiratory diseases in eight countries

BackgroundInformal care is a key element of health care and well-being for society, yet it is scarcely visible and rarely studied in health economic evaluations. This study aims to estimate the time use and cost associated with informal care for cardiovascular diseases, pneumonia and ten different cancers in eight Latin American countries (Argentina, Brazil, Chile, Colombia, Costa Rica, Ecuador, Mexico and Peru).MethodsWe carried out an exhaustive literature review on informal caregivers’ time use, focusing on the selected diseases. We developed a survey for professional caregivers and conducted expert interviews to validate this data in the local context. We used an indirect estimate through the interpolation of the available data, for those cases in which we do not found reliable information. We used the proxy good method to estimate the monetary value of the use of time of informal care. National household surveys databases were processed to obtain the average wage per hour of a proxy of informal caregiver. Estimates were expressed in 2020 US dollars.ResultsThe study estimated approximately 1,900 million hours of informal care annually and $ 4,300 million per year in average informal care time cost for these fifteen diseases and eight countries analyzed. Cardiovascular diseases accounted for an informal care burden that ranged from 374 to 555 h per year, while cancers varied from 512 to 1,825 h per year. The informal care time cost share on GDP varied from 0.26% (Mexico) to 1.38% (Brazil), with an average of 0.82% in the studied American countries. Informal care time cost represents between 16 and 44% of the total economic cost (direct medical and informal care cost) associated with health conditions.ConclusionsThe study shows that there is a significant informal care economic burden -frequently overlooked- in different chronic and acute diseases in Latin American countries; and highlights the relevance of including the economic value of informal care in economic evaluations of healthcare.

The economic burden of myalgic encephalomyelitis/chronic fatigue syndrome in Australia.

Objective This study aimed to estimate costs of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) to patients, government and Australian society. Methods Australian ME/CFS patients and their carers were recruited using convenience sampling. Patients completed an online retrospective cost diary, providing ME/CFS-related direct medical, non-medical and indirect costs. Informal care costs were collected directly from carers. Data from the Pharmaceutical Benefits Scheme and Medicare Benefits Schedule were linked to participant survey data. Annual per patient and total societal costs were estimated, broken down by category and presented in 2021 AUD. Factors associated with higher costs were investigated using generalised linear models. Results One hundred and seventy five patients (mean age 49 years s.d. 14, 79.4% female) completed the cost diary. Estimated total annual societal costs of ME/CFS in Australia ranged between $1.38 and $10.09 billion, with average annual total costs of $63 400/patient. Three-quarters of these costs were due to indirect costs ($46 731). Disability severity was the key factor associated with higher costs, particularly for indirect costs (being 2.27-fold higher for severe disability than no/mild disability). Conclusions ME/CFS poses a significant economic burden in Australia, owing mainly to high indirect and informal care costs.