Costs of care trajectories of people with dementia compared with matched controls. Longitudinal analysis of linked health and administrative data.

OBJECTIVES: To provide insight into the health and social care costs during the disease trajectory in persons with dementia and the impact of institutionalization and death on healthcare costs compared with matched persons without dementia. METHODS: Electronic health record data from family physicians were linked with national administrative databases to estimate costs of primary care, medication, secondary care, mental care, home care and institutional care for people with dementia and matched persons from the year before the recorded dementia diagnosis until death or a maximum of 4 years after the diagnosis. RESULTS: Total mean health and social care costs among persons with dementia increased substantially during the disease trajectory, mainly due to institutional care costs. For people who remained living in the community, mean health and social care costs are higher for people with dementia than for those without dementia, while for those who are admitted to a long-term care facility, mean health and social care costs are higher for people without dementia than for those with dementia. CONCLUSIONS: The steep rise in health and social care costs across the dementia care trajectory is mainly due to increasing costs for institutional care. For those remaining in the community, home care costs and hospital care costs were the main cost drivers. Future research should adopt a societal perspective to investigate the influence of including social costs.

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.

Determinants of time to institutionalisation and related healthcare and societal costs in a community-based cohort of patients with Alzheimer's disease dementia.

OBJECTIVES: To examine the costs of caring for community-dwelling patients with Alzheimer's disease (AD) dementia in relation to the time to institutionalisation. METHODS: GERAS was a prospective, non-interventional cohort study in community-dwelling patients with AD dementia and their caregivers in three European countries. Using identified factors associated with time to institutionalisation, models were developed to estimate the time to institutionalisation for all patients. Estimates of monthly total societal costs, patient healthcare costs and total patient costs (healthcare and social care together) prior to institutionalisation were developed as a function of the time to institutionalisation. RESULTS: Of the 1495 patients assessed at baseline, 307 (20.5%) were institutionalised over 36 months. Disease severity at baseline [based on Mini-Mental State Examination (MMSE) scores] was associated with risk of being institutionalised during follow up (p < 0.001). Having a non-spousal informal caregiver was associated with a faster time to institutionalisation (944 fewer days versus having a spousal caregiver), as was each one-point worsening in baseline score of MMSE, instrumental activities of daily living and behavioural disturbance (67, 50 and 30 fewer days, respectively). Total societal costs, total patient costs and, to a lesser extent, patient healthcare-only costs were associated with time to institutionalisation. In the 5 years pre-institutionalisation, monthly total societal costs increased by more than £1000 (€1166 equivalent for 2010) from £1900 to £3160 and monthly total patient costs almost doubled from £770 to £1529. CONCLUSIONS: Total societal costs and total patient costs rise steeply as community-dwelling patients with AD dementia approach institutionalisation.

Time-varying effects of socio-demographic and economic factors on the use of institutional long-term care before dementia-related death: A Finnish register-based study.

OBJECTIVES: The effects of socio-demographic and economic factors on institutional long-term care (LTC) among people with dementia remain unclear. Inconsistent findings may relate to time-varying effects of these factors as dementia progresses. To clarify the question, we estimated institutional LTC trajectories by age, marital status and household income in the eight years preceding dementia-related and non-dementia-related deaths. METHODS: We assessed a population-representative sample of Finnish men and women for institutional LTC over an eight-year period before death. Deaths related to dementia and all other causes at the age of 70+ in 2001-2007 were identified from the Death Register. Dates in institutional LTC were obtained from national care registers. We calculated the average and time-varying marginal effects of age, marital status and household income on the estimated probability of institutional LTC use, employing repeated-measures logistic regression models with generalised estimating equations (GEE). RESULTS: The effects of age, marital status and household income on institutional LTC varied across the time before death, and the patterns differed between dementia-related and non-dementia-related deaths. Among people who died of dementia, being of older age, non-married and having a lower income predicted a higher probability of institutional LTC only until three to four years before death, after which the differences diminished or disappeared. Among women in particular, the probability of institutional LTC was nearly equal across age, marital status and income groups in the last year before dementia-related death. Among those who died from non-dementia-related causes, in contrast, the differences widened until death. CONCLUSIONS: We show that individuals with dementia require intensive professional care at the end of life, regardless of their socio-demographic or economic resources. The results imply that the potential for extending community living for people with dementia is likely to be difficult through modification of their socio-demographic and economic environments.

Hospital and Institutionalisation Care Costs after Limb and Visceral Ischaemia Benchmarked Against Stroke: Long-Term Results of a Population Based Cohort Study.

OBJECTIVE/BACKGROUND: There are few published data on the acute care or long-term costs after acute/critical limb or visceral ischaemia (ACLVI) events. Using data from patients with acute events in a population based incidence study (Oxford Vascular Study), the present study aimed to determine the long-term costs after an ACLVI event. METHODS: All patients with first ever incident ACLVI from 2002 to 2012 were included. Analysis was based on follow up until January 2017, with all patients having full 5 year follow up. Multivariate regressions were used to assess baseline and subsequent predictors of total 5 year hospital care costs. Overall costs after an ACLVI event were benchmarked against those after stroke in the same population, during the same period. RESULTS: Among 351 patients with an ACLVI event, mean 5 year total care costs were €35,211 (SD 50,500), of which €6443 (18%) were due to long-term institutionalisation. Costs differed by type of event (acute visceral ischaemia €16,476; acute limb ischaemia €24,437; critical limb ischaemia €46,281; p < 0.001). Results of the multivariate analyses showed that patients with diabetes and those undergoing above knee amputations incurred additional costs of €11,804 (p = 0.014) and €25,692 (p < 0.001), respectively. Five year hospital care costs after an ACLVI event were significantly higher than after stroke (€28,768 vs. €22,623; p = 0.004), but similar after including long-term costs of institutionalisation (€35,211 vs. €35,391; p = 0.957). CONCLUSION: Long-term care costs after an ACLVI event are considerable, especially after critical limb ischaemia. Hospital care costs were significantly higher than for stroke over the long term, and were similar after inclusion of costs of institutionalisation.

What Are the Determinants of Dental Care Expenditures in Institutions for Adults With Disabilities? Findings From a National Survey.

OBJECTIVE: To analyze the determinants of dental care expenditures in institutions for adults with disabilities. DESIGN: Health and disability survey and insurance database. SETTING: Institutional setting. PARTICIPANTS: Adults (N=2222) living in institutions for people with cognitive, sensory, and mobility disabilities. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: We used a Heckman selection model to correct for potential sample selection bias due to the high percentage of non-dental care users. The Heckman selection model is a 2-step statistical approach based on the simultaneous estimation of 2 multiple regression models-a selection equation (step 1) and an outcome equation (step 2)-offering a means of correcting for nonrandomly selected samples. The selection equation modeled whether the individual had consulted a dentist at least once, whereas the outcome equation explained the dental care expenditures. Disability severity was assessed by scoring mobility and cognitive functional limitations. Regressions also included sociodemographic characteristics and other health-related variables. RESULTS: Individuals with the highest cognitive limitation scores, without family visits, without supplementary health insurance, and with poor oral health status were less likely to consult a dentist. After controlling for potential selection bias, the only variable that remained statistically significant in the outcome equation was the oral health status: when individuals with poor health status had consulted at least once, they had a higher level of dental care expenditure. CONCLUSIONS: Functional limitations were barriers to accessing dental care even in institutions for adult with disabilities. These barriers should be overcome because they may worsen their oral health status and well-being. Given the lack of literature on this specific topic, our results are important from a policy perspective. Health authorities should be alerted by these findings.

[Application of the Balance of Care model in decision-making regarding the best care for patients with dementia]. / Aplicación del modelo Balance of Care en la toma de decisiones acerca del mejor cuidado para las personas con demencia.

OBJECTIVE: To describe the implementation of the Balance of Care model in decision-making regarding the best care for patients with dementia in Spain. METHODS: The Balance of Care model was used, which consists of (1) describing the profile of the typical cases of people with dementia and their caregivers, (2) identifying the most suitable care setting for each of the cases (home-care or long-term care institution), (3) designing specific care plans for each case, and (4) evaluating the cost of the proposed care plans. RESULTS: A total of 1,641 people with dementia and their caregivers from eight European countries were used in the case design. The evaluation of cases was conducted by 20 experts in different medical fields of dementia. In Spain, the results indicated that initially the most suitable placement to take care of people with dementia was the home, however in cases with higher dependency in activities of daily living, the long-term care setting was the best option. For the best care plan, the following resources were chosen: professional help to perform basic activities; day center; multidisciplinary home care team; financial support; community nurse; and social worker. DISCUSSION: The Balance of Care method allows us to assess the most appropriate place of care for people with dementia systematically, objectively and with a multidisciplinary team. Other cost-effective interventions should be integrated in patients with dementia care in order to improve home care.

The societal costs of dementia in Sweden 2012 - relevance and methodological challenges in valuing informal care.

BACKGROUND: In this study, we sought to estimate the societal cost of illness in dementia in Sweden in 2012 using different costing approaches to highlight methodological issues. METHODS: We conducted a prevalence-based cost-of-illness study with a societal perspective. RESULTS: The societal costs of dementia in Sweden in 2012 were SEK 62.9 billion (approximately €7.2 billion, approximately US$9.0 billion) or SEK 398,000 per person with dementia (approximately €45,000, approximately US$57,000). By far the most important cost item is the cost of institutional care: about 60% of the costs. In the sensitivity analysis, different quantification and costing approaches for informal care resulted in a great variation in the total societal cost, ranging from SEK 60 billion (€6.8 billion, US$8.6 billion) to SEK 124 billion (€14.1 billion, US$17.8 billion). CONCLUSIONS: The societal costs of dementia are very high. The cost per person with dementia has decreased somewhat, mainly because of de-institutionalisation. The majority of the costs occur in the social care sector, but the costing of informal care is crucial for the cost estimates.

Is the level of institutionalisation found in psychiatric housing services associated with the severity of illness and the functional impairment of the patients? A patient record analysis.

BACKGROUND: In this cross-sectional study, we investigated whether clinical, social, financial, and care variables were associated with different accommodation settings for individuals suffering from severe and persistent mental disorders. METHOD: Electronic record data of 250 patients who fulfilled the criteria for persistent and severe mental illness were used. Multiple linear regression models were applied to analyse associations between the types and the costs of housing services and the patients' severity of illness, their functional impairment, and their socio-demographic characteristics. RESULTS: We identified 50 patients living at home without need for additional housing support who were receiving outpatient treatment, 41 patients living in the community with outpatient housing support, 23 patients living with foster families for adults, 45 patients living in group homes with 12-h staff cover, 10 patients living in group homes with 24-h staff, and 81 patients living in psychiatric nursing homes. While this housing differed largely in the level of institutionalisation and also in the costs of accommodation, these differences were not related to a patient's severity of disease or in their functional impairment. In particular, patients living in nursing homes had a slightly higher level of functioning compared to those living in the community without welfare housing services. Only where patients were subject to guardianship was there a significant association with an increased level of institutionalisation. CONCLUSIONS: Our study suggests that the level of institutionalisation and the associated costs of welfare housing services do not accurately reflect the severity of illness or the level of functional impairment of the patients there are designed to support. The limitations of the study design and the data do not allow for conclusions about causal relationships or generalisation of the findings to other regions. Therefore, further prospective studies are needed to assess the adequacy of the setting assignment of patients with persistent severe mental illness into different types of housing settings with appropriate (also welfare) services.

'A disease that makes criminals': encephalitis lethargica (EL) in children, mental deficiency, and the 1927 Mental Deficiency Act.

Encephalitis lethargica (EL) was an epidemic that spread throughout Europe and North America during the 1920s. Although it could affect both children and adults alike, there were a strange series of chronic symptoms that exclusively affected its younger victims: behavioural disorders which could include criminal propensities. In Britain, which had passed the Mental Deficiency Act in 1913, the concept of mental deficiency was well understood when EL appeared. However, EL defied some of the basic precepts of mental deficiency to such an extent that amendments were made to the Mental Deficiency Act in 1927. I examine how clinicians approached the sequelae of EL in children during the 1920s, and how their work and the social problem that these children posed eventually led to changes in the legal definition of mental deficiency. EL serves as an example of how diseases are not only framed by the society they emerge in, but can also help to frame and change existing concepts within that same society.

Costs of care for people with dementia just before and after nursing home placement: primary data from eight European countries.

BACKGROUND: Dementia is the most common cause of functional decline among elderly people and is associated with high costs of national healthcare in European countries. With increasing functional and cognitive decline, it is likely that many people suffering from dementia will receive institutional care in their lifetime. To delay entry to institutional care, many European countries invest in home and community based care services. OBJECTIVES: This study aimed to compare costs for people with dementia (PwD) at risk for institutionalization receiving professional home care (HC) with cost for PwD recently admitted to institutional long-term nursing care (ILTC) in eight European countries. Special emphasis was placed on differences in cost patterns across settings and countries, on the main predictors of costs and on a comprehensive assessment of costs from a societal perspective. METHODS: Interviews using structured questionnaires were conducted with 2,014 people with dementia and their primary informal caregivers living at home or in an ILTC facility. Costs of care were assessed with the resource utilization in dementia instrument. Dementia severity was measured with the standardized mini mental state examination. ADL dependence was assessed using the Katz index, neuropsychiatric symptoms using the neuropsychiatric inventory (NPI) and comorbidities using the Charlson. Descriptive analysis and multivariate regression models were used to estimate mean costs in both settings. A log link generalized linear model assuming gamma distributed costs was applied to identify the most important cost drivers of dementia care. RESULTS: In all countries costs for PwD in the HC setting were significantly lower in comparison to ILTC costs. On average ILTC costs amounted to 4,491 Euro per month and were 1.8 fold higher than HC costs (2,491 Euro). The relation of costs between settings ranged from 2.4 (Sweden) to 1.4 (UK). Costs in the ILTC setting were dominated by nursing home costs (on average 94%). In the HC setting, informal care giving was the most important cost contributor (on average 52%). In all countries costs in the HC setting increased strongly with disease severity. The most important predictor of cost was ADL independence in all countries, except Spain and France where NPI severity was the most important cost driver. A standard deviation increase in ADL independence translated on average into a cost decrease of about 22%. CONCLUSION: Transition into ILTC seems to increase total costs of dementia care from a societal perspective. The prevention of long-term care placement might be cost reducing for European health systems. However, this conclusion depends on the country, on the valuation method for informal caregiving and on the degree of impairment.

Costs and benefits of home care for the elderly versus residential care: a comparison using propensity scores.

A comparison of the costs of residential care and home care shows that the former is more expensive for society. However, elderly people seem to be happier in residential care. All stakeholders, except the state (and thus the taxpayer), benefit if elderly people enter residential care. This reveals that payment systems in the Netherlands contain adverse incentives stimulating entry into residential care. The research is based on surveys of older people in the Netherlands living at home and those living in residential care homes in the period 2007-2009. Propensity score matching is used to match people living at home with those living in residential care. All costs of living and health care are compared for these two groups.

Implications of early treatment among Medicaid patients with Alzheimer's disease.

OBJECTIVE: The objective of this study was to examine the effect of treatment timing on risk of institutionalization of Medicaid patients with Alzheimer's disease (AD) and to estimate the economic implications of earlier diagnosis and treatment initiation. METHODS: New Jersey Medicaid claims data (1997-2009) were used retrospectively to study the effect of treatment on time to institutionalization. Observed Medicaid payments were used to calculate savings from delayed institutionalization, adjusting for cost offsets resulting from concurrent changes in use of other medical services. RESULTS: Initiation of existing therapies at earliest symptomatic onset is predicted to delay institutionalization by 91 days, reducing Medicaid costs by $19,108/institutionalized patient. Incorporating an 18.5% cost offset from increased use of other medical services as well as drug costs associated with earlier treatment results in net savings of $12,687/patient. Projected annual Medicaid savings exceed $1 billion. CONCLUSION: Earlier treatment leads to a small delay in institutionalization among AD patients, resulting in significant costs savings to Medicaid.

The use and costs of formal care in newly diagnosed dementia: a three-year prospective follow-up study.

OBJECTIVE: To investigate the use of formal care during the first three years after diagnosis of mild dementia and identify cost-predicting factors. DESIGN: Prospective longitudinal study over three years. SETTING: An incidence-based bottom-up cost-of-illness study where information about formal health care services was drawn from the municipalities' registers during the first three years after the diagnosis of mild dementia. PARTICIPANTS: 109 patients with mild dementia at baseline, diagnosed according to consensus criteria based on standardized assessments. MEASUREMENT: The use of formal care as registered by the municipalities' registration systems. Costs were estimated by applying unit costs, including municipal expenses and out-of-pocket contributions. Clinical data were collected at baseline to identify cost-predicting factors. RESULTS: Costs for formal care were increasing from € 535 per month of survival (MOS) at baseline to € 3,611 per MOS during the third year, with a mean of € 2,420 during the whole observation period. The major cost driver (74%) was institutional care. The costs for people with dementia with Lewy bodies (€ 3,247 per MOS) were significantly higher than for people with Alzheimer disease (€ 1,855 per MOS). The most important cost-predicting factors we identified were the living situation, a diagnosis of non-Alzheimer disease, comorbidity, and daily living functioning. The use of cholinesterase inhibitors was related to lower costs. CONCLUSION: Formal care costs increased significantly over time with institutional care being the heaviest cost driver. Studies with longer observation periods will be necessary to evaluate the complete socioeconomic impact of the course of dementia.

[Prevention of frailty and dependency in older adults]. / Fragilité des personnes âgées et prévention de la dependence.

Aging is associated with the onset of frailty and chronic diseases, leading to physical and cognitive functional decline, reduced autonomy and, eventually, physical dependency. Persons aged 65 years or more should start to be screened in order to detect and prevent frailty, thus allowing the community to anticipate the consequences of aging rather than simply enduring them. According to the Trillard report commissioned by the French President, this could encourage economic growth and save up to 10 billion Euros per year: Fragile and pre-fragile elderly persons are not taken into account by our current healthcare system: it is only once they become truly dependent that they start to receive costly geriatric care Major medical advances could result from early detection of frailty and age-related diseases. In addition, development of specific medical, social and behavioural services could create new jobs and lead to greater economic efficiency. Our healthcare system will have to adapt rapidly to the growth in the elderly population. A pilot study conducted by the Toulouse Gerontopôle demonstrates the importance of screening, assessment and intervention for frail and pre-frail populations, who have previously been completely neglected by the French healthcare system.

Institutional care versus home care for the elderly in a rural area: cost comparison in rural Japan.

INTRODUCTION: The rise in institutional care costs, such as that associated with care in chronic hospitals or nursing homes, is a serious social concern in Japan, and this is particularly so in rural areas which are more rapidly aging than others. This has led to a proposal to reduce costs by deinstitutionalizing the disabled elderly. However, the actual financial benefit of deinstitutionalizing the disabled elderly is unclear. OBJECTIVE: To examine the effectiveness of deinstitutionalizing the disabled elderly with the aim of cost reduction. METHODS: This study utilized a cross-sectional design and complete census survey. The participants were 139 residents of a rural town in Hokkaido who were institutionalized as of 1 July 2007, and whose Care Needs Levels were classified according to Long-Term Care Insurance (LTCI) in Japan. Of these, 87 participants were considered candidates for deinstitutionalization. Participants who were considered unable to stay alone at home, such as those with behavioral problems, at risk of falling, or in need of hospital medical care, were excluded. Data were collected on institutional care costs, and an original questionnaire was distributed asking institutional staff about participant characteristics and physical function levels. Existing costs were collected and costs were calculated if participants were discharged from institutions to their homes. RESULTS: Approximately 20% of participants lived alone, and 80% had a severe disability. The estimated costs of discharging patients to their homes were higher than existing institutional care costs for 98% of participants. The gap in cost tended to be greater in patients with higher care needs. CONCLUSION: The deinstitutionalization of disabled elderly is not an effective measure to help reduce healthcare costs in rural areas of Japan.

North Carolina's institutional bias: enforcing the ADA's integration mandate.

Last year, the US Department of Justice determined that the state of North Carolina was violating the Americans with Disabilities Act by inappropriately institutionalizing people in adult care homes rather than providing them with housing and appropriate supports in the community. The state's long-standing institutional bias must now be corrected.

Net costs of dementia in Sweden - an incidence based 10 year simulation study.

BACKGROUND: Aging of the population results in increasing number people suffering from dementia, and this will have a great impact on costs for the society. Because of the long duration of dementia disorders, it is difficult to collect empirical data for the whole survival period of incident cases. Therefore, modeling approaches are frequently used. The purpose of this study was to describe the costs of an incident dementia cohort with progression modeling. METHODS: Epidemiological data indicated that the incidence of dementia in Sweden was 24,000 people in 2005. Thus, incident cases were run in a Markov model for 10 cycles of 1 year each. Severity state specific costs were used and defined by Clinical Dementia Rating scale. RESULTS: Total cost for the cohort was 27.24 billion Swedish Krona (SEK). The mean cost per person and year was 269,558 SEK. Total cost for long-term institutional care was 21 billion SEK during the modeled period. CONCLUSION: Cost of long-term institutional care is the major cost driver, even in mild dementia.

Factors associated with the use of institutional long-term care in Japan.

AIM: Institutionalization is a potential cost burden for long-term care (LTC) systems in many developed countries. Japan implemented an LTC insurance system in April 2000 and control of institutionalization has been one of its major issues. This study used over 2.1 million national representative administrative records to determine the factors that contribute to care use and the availability of local LTC facilities associated with the use of institutional LTC in Japan. METHODS: Factors associated with the 1-year institutional use of individuals were examined by a multivariate logistic regression analysis. In addition, we determined the impact of the regional capacities of LTC and medical institutions and the regional deviations of institutional LTC use using standardized use rates estimated from the demography and disability levels of regional LTC users. RESULTS: We found that subjects aged 85 years or older had more than twice as high a risk as those aged less than 74 years and that the risk of use increased more than eight times at the highest disability level. In addition, the regional capacity of LTC institutions promoted the use of those institutions, whereas that of general beds had a suppressive effect on such use, possibly due to social hospitalization. CONCLUSION: Our results suggest that the use of LTC institutions is accelerated by the age and disability level of users as well as the regional availability of such institutions and that an appropriate supply of LTC institutions could increase their use and potentially improve the efficiency of medical care.

Frailty predicts increased hospital and six-month healthcare cost following colorectal surgery in older adults.

BACKGROUND: The purpose of this study was to determine the relationship of frailty and 6-month postoperative costs. METHODS: Subjects aged ≥ 65 years undergoing elective colorectal operations were enrolled in a prospective observational study. Frailty was assessed by a validated measure of function, cognition, nutrition, comorbidity burden, and geriatric syndromes. Frailty was quantified by summing the number of positive characteristics in each subject. RESULTS: Sixty subjects (mean age, 75 ± 8 years) were studied. Inpatient mortality was 2% (n = 1). Overall, 40% of subjects (n = 24) were considered nonfrail, 22% (n = 13) were prefrail, and 38% (n = 22) were frail. With advancing frailty, hospital costs increased (P < .001) and costs from discharge to 6-months increased (P < .001). Higher degrees of frailty were related to increased rates of discharge institutionalization (P < .001) and 30-day readmission (P = .044). CONCLUSIONS: A simple, brief preoperative frailty assessment accurately forecasts increased surgical hospital costs and postdischarge to 6-month healthcare costs after colorectal operations in older adults.