Estimates of Current Capacity for Diagnosing Alzheimer's Disease in Sweden and the Need to Expand Specialist Numbers.

BACKGROUND: The emergence of disease-modifying Alzheimer's (AD) treatments provides new hope to patients and families but concerns have been raised about the preparedness of healthcare systems to provide timely access to such treatments because of a combination of a complex diagnostic process and a large prevalent pool. OBJECTIVES: We assess the preparedness of Sweden, a high-income country known for its dementia-friendly policies, to diagnose AD patients eligible for treatment within a six-month window, given current capacity for specialist evaluations and biomarker testing. We calculate the investment requirements for Sweden to achieve this target over a timeframe of 20 years. DESIGN: Desk research to identify data for population, mortality, disease burden, cost of services and current capacity, expert consultation to inform assumptions about patient journey, and use of a Markov model to predict waiting times. The model simulates the patients' journey through different evaluation stages: initial evaluation by a primary care specialist, neurocognitive testing by an AD specialist, and confirmatory biomarker testing with PET scanning or cerebrospinal fluid (CSF) testing. The model assumes specialist appointments and PET scans are capacity constrained, and patients progress from cognitively normal to MCI and from MCI to dementia in the resulting waiting times. MEASUREMENTS: Projected waiting times for diagnosis of eligibility for disease-modifying Alzheimer's treatment from 2023 to 2042 assuming current capacity, assuming 20% of Swedish residents aged 60 years and above would seek an evaluation for cognitive decline. Investments required to scale capacity up to reach target of providing diagnosis within six months on average. RESULTS: Initial average waiting times for AD specialist appointments would be around 21 months in 2023 and remain around 55 months through 2042, as demand would continue to outstrip supply throughout the 20-year model horizon. Waiting times for biomarker testing would be stable at less than four weeks, as patients would be held up in the queue for their first specialist consultations, and use of CSF testing is widely accepted in Sweden. An additional 25% of AD specialists would have to be added above the current growth trend to reduce waiting times to less than 6 months at an average annual cost of approximately 805 million SEK. The increased cost of volume of biomarker testing would amount to about 106 million SEK per year. CONCLUSIONS: At current capacity, the Swedish healthcare system is unable to provide timely diagnosis of patients eligible for disease-modifying AD treatment. Although future diagnostic technologies, such as digital cognitive assessments and blood tests for the AD pathology, might decrease demand for capacity-constrained services, substantial investments will be required to meet a target of less than six months of waiting time for a diagnosis.

Multimodal Preventive Trial for Alzheimer's Disease: MIND-ADmini Pilot Trial Study Design and Progress.

BACKGROUND: Interventions simultaneously targeting multiple risk factors and mechanisms are most likely to be effective in preventing cognitive impairment. This was indicated in the Finnish Geriatric Intervention Study to Prevent Cognitive Impairment and Disability (FINGER) testing a multidomain lifestyle intervention among at-risk individuals. The importance of medical food at the early symptomatic disease stage, prodromal Alzheimer's disease (AD), was emphasized in the LipiDiDiet trial. The feasibility and effects of multimodal interventions in prodromal AD are unclear. OBJECTIVES: To evaluate the feasibility of an adapted FINGER-based multimodal lifestyle intervention, with or without medical food, among individuals with prodromal AD. METHODS: MIND-ADmini is a multinational proof-of-concept 6-month randomized controlled trial (RCT), with four trial sites (Sweden, Finland, Germany, France). The trial targeted individuals with prodromal AD defined using the International Working Group-1 criteria, and with vascular or lifestyle-related risk factors. The parallel-group RCT includes three arms: 1) multimodal lifestyle intervention (nutritional guidance, exercise, cognitive training, vascular/metabolic risk management and social stimulation); 2) multimodal lifestyle intervention+medical food (Fortasyn Connect); and 3) regular health advice/care (control group). Primary outcomes are feasibility and adherence. Secondary outcomes are adherence to the individual intervention domains and healthy lifestyle changes. RESULTS: Screening began on 28 September 2017 and was completed on 21 May 2019. Altogether 93 participants were randomized and enrolled. The intervention proceeded as planned. CONCLUSIONS: For the first time, this pilot trial tests the feasibility and adherence to a multimodal lifestyle intervention, alone or combined with medical food, among individuals with prodromal AD. It can serve as a model for combination therapy trials (non-pharma, nutrition-based and/or pharmacological interventions).

Do Malnutrition, Sarcopenia and Frailty Overlap in Nursing-Home Residents?

OBJECTIVES: To study the prevalence and overlap between malnutrition, sarcopenia and frailty in a selected group of nursing home (NH) residents. DESIGN: Cross-sectional descriptive study. SETTING: Nursing homes (NH). PARTICIPANTS: 92 residents taking part in an exercise and oral nutritional supplementation study; >75 years old, able to rise from a seated position, body mass index ≤30 kg/m2 and not receiving protein-rich oral nutritional supplements. MEASUREMENTS: The MNA-SF and Global Leadership Initiative on Malnutrition (GLIM) criteria were used for screening and diagnosis of malnutrition (moderate or severe), respectively. Sarcopenia risk was assessed by the SARC-F Questionnaire (0-10p; ≥4=increased risk), and for diagnosis the European Working Group of Sarcopenia in Older People (EWGSOP2) criteria was used. To screen for frailty the FRAIL Questionnaire (0-5p; 1-2p indicating pre-frailty, and >3p indicating frailty), was employed. RESULTS: Average age was 86 years; 62% were women. MNA-SF showed that 30 (33%) people were at risk or malnourished. The GLIM criteria verified malnutrition in 16 (17%) subjects. One third (n=33) was at risk for sarcopenia by SARC-F. Twenty-seven (29%) subjects displayed confirmed sarcopenic according to EWGSOP2. Around 50% (n=47) was assessed as pre-frail or frail. Six people (7%) suffered from all three conditions. Another five (5%) of the residents were simultaneously malnourished and sarcopenic, but not frail, while frailty coexisted with sarcopenia in 10% (n=9) of non-malnourished residents. Twenty-nine (32%) residents were neither malnourished, sarcopenic nor frail. CONCLUSIONS: In a group of selected NH residents a majority was either (pre)frail (51%), sarcopenic (29%) or malnourished (17%). There were considerable overlaps between the three conditions.

A comparison of self and proxy quality of life ratings for people with dementia and their carers: a European prospective cohort study.

Objectives: To identify correlates of self-rated and proxy-rated quality of life (QoL) in people with dementia on (i) a dementia-specific and (ii) a capability-wellbeing QoL measure at baseline and 12-month follow-up, and to consider such factors in the context of QoL intervention development.Method: Prospective clinical and demographic data were collected from 451 community-dwelling dyads (mild-moderate dementia) across eight European countries. QoL was measured using the QOL-AD and the ICECAP-O. Multivariate modelling identified correlates of self- and proxy-rated QoL at baseline and at 12-month follow-up.Results: Carer's proxy-ratings of QoL were significantly lower than self-ratings at all time-points for both measures. Proxy-ratings declined over time, but self-ratings remained stable. Baseline predictors of greater self-rated QoL were education, and greater functional ability and relationship quality. Greater proxy-rated QoL was associated with education and greater functional ability, relationship quality, carer social support and carer QoL, lower carer anxiety/depression and less severe neuropsychiatric symptoms in people with dementia. At follow-up, greater self-rated QoL was predicted by greater functional ability, relationship quality, carer social support and having a spousal carer. Greater proxy-rated QoL at follow-up was associated with the same factors as at baseline; however, the dyad living together was an additional predictive factor.Conclusion: Both proxy-ratings and self-ratings of QoL should be interpreted with caution and in the context of each individual caregiving relationship. Different functional, psychosocial, relational and contextual factors influence self- and proxy-ratings, and both sets of factors should be considered in the context of QoL intervention development for the dyad.

Cost analysis of day care centres in Norway.

BACKGROUND: Day care services aim to offer meaningful activities and a safe environment for the attendees and a respite for family caregivers while being cost effective. This study compares the use of formal and informal care in users and non-users of day care centres designed for persons with dementia. METHOD: Users of day care designed for dementia (DC group) and non-users (NDC group) were followed over a period of 24 months or until nursing home admission (NHA) respectively death. Demographic and clinical characteristics were collected at baseline and after 12 and 24 months. The use of care was recorded by Resource Utilization in Dementia (RUD). RESULTS: A total of 257 persons with dementia participated in the study, 181 in the DC group and 76 in the NDC group. Users of day care centres cause higher costs due to the expenses for day care, while neither the use of home nursing, secondary care, informal care nor the time until NHA did show any differences between users and non-users. The overall costs were higher in the DC group at baseline and after 12 months, but this difference was no longer present at the end of the two-year study period. CONCLUSION: Our results indicate no potential cost-saving effect of day care designed for people with dementia, as the use of day care did neither result in a reduced use of care nor in a delay of NHA. Future research should balance the non-monetary benefits of day care against its costs for a full cost-effectiveness analysis, most favourable in a RCT-design.

Access to community care for people with dementia and their informal carers : Case vignettes for a European comparison of structures and common pathways to formal care.

BACKGROUND: People with dementia and their informal carers often do not receive appropriate professional support or it is not received at the right time. OBJECTIVES: Description and comparison of common pathways to formal community dementia care in eight European countries as a part of the transnational Actifcare project. MATERIALS AND METHODS: The German team was responsible for creating an individual case scenario as a starting point. The research teams in Ireland, Italy, the Netherlands, Norway, Portugal, Sweden, and the United Kingdom were then asked to describe a common pathway to formal dementia care by writing their own vignette using the provided individual case scenario. RESULTS: A transnational qualitative content analysis was used to identify the following categories as being the most important: involved professionals, dementia-specific and team-based approaches, proactive roles, and financial aspects. General practitioners (GPs) are described as being the most important profession supporting the access to formal care in all the involved countries. In some countries other professionals take over responsibility for the access procedure. Dementia-specific approaches are rarely part of standard care; team-based approaches have differing significances in each of the countries. Informal carers are mainly proactive in seeking formal care. The Nordic countries demonstrate how financial support enhances access to the professional system. CONCLUSION: Enhanced cooperation between GPs and other professions might optimize access to formal dementia care. Team-based approaches focusing on dementia care should be developed further. Informal carers should be supported and relieved in their role. Financial barriers remain which should be further investigated and reduced.

Formal and Informal Care of Community-Living Older People: A Population-Based Study from the Swedish National Study on Aging and Care.

OBJECTIVES: Study formal and informal care of community-living older people in the Swedish National study of Aging and Care (SNAC). DESIGN: Cross-sectional, population based cohort. SETTING: Three areas in Sweden: Municipality of Nordanstig, Stockholm and Skåne County. PARTICIPANTS: 3,338 persons ≥72 years. MEASUREMENTS: Patterns and amounts of informal and formal care by cognition and area of residence. RESULTS: 73% received no care; 14% formal care; and 17% informal care (7% received both). In the whole study population, including those who used no care, individuals in small municipalities received 9.6 hours of informal care/month; in mid-size municipalities, 6.6; and in urban areas, 5.6. Users of informal care received 33.1 hours of informal care/month in small municipalities, 54.6 in mid-size municipalities and 36.1 in urban areas. Individuals with cognitive impairment received 14.1 hours of informal care/month, 2.7 times more than people with no/slight impairment. In the whole study population, individuals in small municipalities received an average of 3.2 hours of formal care/month; in mid-size municipalities 1.4; and in urban areas, 2.6. Corresponding figures for formal care users were 29.4 hours in small municipalities, 13.6 in mid-size municipalities and 16.7 in urban areas. Formal care users received 7.1 hours, and informal care users, 5.9 hours for each hour/month received by people in the study population as a whole. CONCLUSIONS: More informal than formal care was provided. Informal care is more frequent in small municipalities than urban areas and for those with than without cognitive impairment. The relationship between data on the whole population and the data on users or care indicates that population-based data are needed to avoid overestimates of care.

Combination Therapy of Anti-Tau and Anti-Amyloid Drugs for Disease Modification in Early-stage Alzheimer's Disease: Socio-economic Considerations Modeled on Treatments for Tuberculosis, HIV/AIDS and Breast Cancer.

Current drugs for treatment of mild to severe dementia of the Alzheimer's type include cholinesterase inhibitors and the NMDA non-competitive receptor antagonist memantine. There is controversy as to the additive benefit of these symptomatic drugs, and their effects are clinically modest. Patients with Alzheimer's disease (AD) are known to have characteristic pathology, including senile plaques with amyloid beta-protein aggregates and neurofibrillary tangles with assembled tau proteins, which start in the hippocampus and spread to neighboring areas. Amyloid and tau modifying drugs are under clinical testing. Based on this pathophysiology, it is crucial to investigate whether anti-amyloid and anti-tau combined therapy would show efficacy in early stage of AD, beyond what could be achieved with anti-amyloid or anti-tau monotherapy. It is equally important to consider the socio-economic implications of such a combination therapy, if effective. We hypothesize that the high costs of combination therapy for early-stage AD patients will require societal and public health initiatives to ensure universal access to AD treatment. In order to better predict these socio-economic implications, we summarize the management of other combination therapies used for tuberculosis, HIV/AIDS, and breast cancer, based on a database search of PubMed and other relevant sources. We put forward a framework for testing a potential anti-amyloid and anti-tau disease modifying combination therapy for early-stage AD patients and present an analysis of the socio-economic implications of such a combination therapy.

The Road Ahead To Cure And Prevent Alzheimer's Disease: Implementing Prevention into Primary Care.

Most old adults receive their health care from their primary care practitioner; as a consequence, as the population ages, the manifestations and complications of cognitive impairment and dementia impose a growing burden on providers of primary care. Current guidelines do not recommend routine cognitive screening for older persons by primary care physicians, although the vast majority recommend a cognitive status assessment and neurological examination for subjects with a cognitive complaint. Also, no clinical practice guidelines recommend interventions in older adults with cognitive impairment in primary care settings. However, primary care physicians need to conduct a review of risks and protective factors associated with cognitive decline and organize interventions to improve or maintain cognitive function. Recent epidemiological studies have indicated numerous associations between lifestyle-related risk factors and incidental cognitive impairment. The development of biomarkers could also help in diagnosis, prognosis, selection for clinical trials, and objective assessment of therapeutic responses. Interventions aimed at cognitive impairment prevention should be pragmatic and easy to implement on a large scale in different health care systems, without generating high additional costs or burden on participants, medical and social care teams.

Analysis of burden in caregivers of people with Alzheimer's disease using self-report and supervision hours.

OBJECTIVES: This study aimed to describe the baseline characteristics of informal carers of community-living Alzheimer's disease (AD) patients by AD severity group and to identify factors associated with two measures of caregiver burden. DESIGN AND SETTING: GERAS is a prospective observational study in France, Germany, and the UK, designed to assess costs and resource use associated with AD, for patients and their caregivers, stratified by disease severity. PARTICIPANTS: 1497 community-dwelling AD patients and their primary caregivers. MEASUREMENTS: Subjective caregiver burden assessed using the Zarit Burden Interview [ZBI] and time spent supervising patients (an objective measure of burden recorded using the Resource Utilization in Dementia instrument) during the month before the baseline visit were recorded. Separate multiple linear regression analyses using ZBI total score and caregiver supervision time as dependent variables were performed to identify patient and caregiver factors independently associated with caregiver burden. RESULTS: Increasing AD severity was associated with both subjective caregiver burden (ZBI total score) and overall caregiver time, which includes supervision time (both p<0.001, ANOVA). Better patient functioning (on instrumental activities of daily living) was independently associated with both a lower ZBI total score and less supervision time, whereas higher levels of caregiver distress due to patient behavior were associated with greater caregiver burden. Other factors independently associated with an increased ZBI total score included younger caregiver age, caregiver self-reported depression, caring for a male patient, and longer time since AD diagnosis. Caregivers living with the patient, being a male caregiver, patient living in a rural location, higher patient behavioral problem subdomain scores for apathy and psychosis, more patient emergency room visits, not receiving food delivery and receiving financial support for caregiving were all associated with greater caregiver supervision time. CONCLUSION: Our results show that subjective caregiver burden and caregiver time are influenced by different factors, reinforcing the need to consider both aspects of caregiving when trying to minimize the burden of AD. However, interventions that minimize caregiver distress and improve patient functioning may impact on both subjective and objective burden.

Health economic evaluation of treatments for Alzheimer's disease: impact of new diagnostic criteria.

The socio-economic impact of Alzheimer's disease (AD) and other dementias is enormous, and the potential economic challenges ahead are clear given the projected future numbers of individuals with these conditions. Because of the high prevalence and cost of dementia, it is very important to assess any intervention from a cost-effectiveness viewpoint. The diagnostic criteria for preclinical AD suggested by the National Institute on Aging and Alzheimer's Association workgroups in combination with the goal of effective disease-modifying treatment (DMT) are, however, a challenge for clinical practice and for the design of clinical trials. Key issues for future cost-effectiveness studies include the following: (i) the consequences for patients if diagnosis is shifted from AD-dementia to predementia states, (ii) bridging the gap between clinical trial populations and patients treated in clinical practice, (iii) translation of clinical trial end-points into measures that are meaningful to patients and policymakers/payers and (iv) how to measure long-term effects. To improve cost-effectiveness studies, long-term population-based data on disease progression, costs and outcomes in clinical practice are needed not only in dementia but also in predementia states. Reliable surrogate end-points in clinical trials that are sensitive to detect effects even in predementia states are also essential as well as robust and validated modelling methods from predementia states that also take into account comorbidities and age. Finally, the ethical consequences of early diagnosis should be considered.

Cost analysis of the use of small stitches when closing midline abdominal incisions.

PURPOSE: Suturing with small stitches instead of with large reduces the risk for surgical site infection and incisional hernia in continuously closed midline abdominal incisions. The purpose was to analyse if using small stitches generated cost savings. METHODS: Between 2001 and 2006 closure of midline incisions using small stitches was, in a randomised trial, compared with the use of large stitches. In 2011 all patients included in the randomised trial, who until then, had had an incisional hernia repair, were recorded. The cost for an open incisional hernia repair with mesh reinforcement during 2010 was calculated. The analysis included both direct and indirect costs. RESULTS: Of 321 patients closed with small stitches incisional hernia occurred in 11 and 3 needed repair. Of 370 patients closed with large stitches herniation occurred in 45 and 14 needed repair. The direct cost per hernia repair was 59,909 Swedish krona (SEK) and the indirect cost was 26,348 SEK. Suturing time with small stitches was 4.6 min longer, increasing the cost for the index operation by 1,076 SEK. From the societal perspective (direct and indirect costs), using small stitches generated a cost reduction of 1,339 SEK for each patient. From the perspective of the public payer (direct costs) the cost reduction was 601 SEK. Using small stitches generated cost savings from a societal perspective if the suturing time was not prolonged over 10.3 min. CONCLUSIONS: Using small stitches when closing midline abdominal incisions with a continuous single-layer technique generates cost savings.

Costs explained by function rather than diagnosis--results from the SNAC Nordanstig elderly cohort in Sweden.

BACKGROUND: Because the prevalence of many brain disorders rises with age, and brain disorders are costly, the economic burden of brain disorders will increase markedly during the next decades. AIM: The purpose of this study is to analyze how the costs to society vary with different levels of functioning and with the presence of a brain disorder. METHODS: Resource utilization and costs from a societal viewpoint were analyzed versus cognition, activities of daily living (ADL), instrumental activities of daily living (IADL), brain disorder diagnosis and age in a population-based cohort of people aged 65 years and older in Nordanstig in Northern Sweden. Descriptive statistics, non-parametric bootstrapping and a generalized linear model (GLM) were used for the statistical analyses. RESULTS: Most people were zero users of care. Societal costs of dementia were by far the highest, ranging from SEK 262,000 (mild) to SEK 519,000 per year (severe dementia). In univariate analysis, all measures of functioning were significantly related to costs. When controlling for ADL and IADL in the multivariate GLM, cognition did not have a statistically significant effect on total cost. The presence of a brain disorder did not impact total cost when controlling for function. The greatest shift in costs was seen when comparing no dependency in ADL and dependency in one basic ADL function. CONCLUSION: It is the level of functioning, rather than the presence of a brain disorder diagnosis, which predicts costs. ADLs are better explanatory variables of costs than Mini mental state examination. Most people in a population-based cohort are zero users of care.

Fewer referrals to Swedish emergency departments among nursing home patients with dementia, comprehensive cognitive decline and multicomorbidity.

OBJECTIVES: The objective was to describe the extent to which nursing home patients had cognitive impairments and were diagnosed with dementia. Furthermore, to describe and compare multicomorbidity, health status and drug use in the three subgroups; dementia diagnosis/not referred, dementia diagnosis/referred and no dementia diagnosis/not referred to an emergency department (ED) over a one-year period. METHODS: A cross-sectional follow-up study was carried out in Sweden. RAI/MDS assessments were conducted on 719 patients in 24 nursing homes, of whom 209 were referred to EDs during a one-year period, accounting for 314 visits. This study involved an extensive examination of the population. RESULTS: The 719 patients were reported to suffer from comprehensive cognitive impairments, which not accorded with the dementia diagnoses, they were significantly fewer. Cognitive decline or dementia diagnosis contributed to a significant decrease of referrals to EDs. Patients with dementia diagnosis/not referred had difficulties understanding others, as well as impaired vision and hearing. Patients with dementia diagnosis/referred usually understood messages. Low BMI, daily pain, multicomorbidity and high drug consumption occurred in all groups. Patients with no dementia diagnosis/not referred had significantly less multicomorbidity. Neuroleptica was significantly more prevalent among those with dementia diagnosis. CONCLUSION: Dementia remains undetected. Patients with cognitive decline and dementia are probably as sick as or even worse than others but may, due to low priority be undertreated or referrals avoided with the objective to provide good care in the setting. Observational studies are needed to identify what is done and could be done in referral situations.

The economic impact of dementia in Europe in 2008-cost estimates from the Eurocode project.

OBJECTIVE: Care for demented people is very resource demanding, the prevalence is increasing and there is so far no cure. Cost of illness (CoI) studies are important by identifying the distribution of costs between different payers of care. The European Union (EU) funded the European Collaboration on Dementia (Eurocode) as part of the EU's 2005 work plan of the Community public health programme. Eurocode was administered by Alzheimer Europe. The aim was to describe the economic impact of dementia in Europe in 2008. METHODS: Eurocode's new estimates for dementia prevalence were included in a cost model based on published European CoI papers. For countries where no CoI figures were available, imputation was used. RESULTS: The total CoI of dementia in the EU27 in 2008 was estimated to be €160 billion (€22 000 per demented per year), of which 56% were costs of informal care. The corresponding costs for the whole Europe was €177 billion. In northern Europe, the direct costs are estimated to be considerabe, while the cost of informal care is the major cost component in southern Europe. The sensitivity analysis showed a range for total EU27 costs between €111 and 168 billion. CONCLUSIONS: The estimated CoI in this study is higher than in previous studies. There are also large differences in different European regions. Notwithstanding the methodological challenges, the societal costs of dementia in Europe are very high which in turn have substantial resource impacts on the social and health care systems in Europe.

Incremental patterns in the amount of informal and formal care among non-demented and demented elderly persons: results from a 3-year follow-up population-based study.

OBJECTIVE: Elderly care includes complex interactions between formal services, informal care, morbidity and disabilities. Studies of the incremental effects of formal and informal care are rare and thus the objective was to describe the longitudinal patterns in formal and informal care given to non-demented and demented persons living in a rural area in Sweden. METHODS: Transitions in the Kungsholmen-Nordanstig Project (n=919) was followed up 3 years later (n=579), presented as different combinations of informal and formal care, institutionalization and mortality. Number of hours spent on care was examined by the Resource Utilization in Dementia instrument (RUD). Bootstrapped descriptive statistics and regression models were applied. RESULTS: The overall mortality during follow-up was 34%, and 15% had been institutionalized. Of those who lived at home, those receiving only formal care had been institutionalized to the greatest extent (29%; p<0.05). In terms of hours, informal care decreased amongst demented. The ratio between demented and non-demented was greater at baseline, both regarding informal care (10:1 and 3:1, respectively) and formal care (5:1 and 4:1, respectively). People with mild cognitive decline and no home support at baseline had a great risk of being receiver of care (formal or informal) or dead at follow-up. CONCLUSIONS: The amount of informal care was lower for demented persons still living at home at follow-up than at baseline, probably due to selection effects (institutionalization and mortality). Mild cognitive decline of non-users of care at baseline was strongly associated with receiving care or being dead at follow-up.

Costs of dementia in Hungary.

OBJECTIVE: The main aim of this paper is to give an overview on the quality of life, health care utilisation and costs of dementia in Hungary. METHOD: A cross-sectional non-population based study of 88 consecutive dementia patients and their caregivers was conducted in three GP practices and one outpatient setting in 2008. Resource Utilization in Dementia (RUD), Mini Mental State Examination (MMSE) and quality of life (EQ-5D) were surveyed and cost calculations were performed. Costs of patients living at home were estimated by the current bottom-up cost-of-illness calculations, while costs of nursing home patients were considered by official reimbursement to determine the disease burden from a societal viewpoint. RESULTS: The mean age of the patients was 77.4 years (SD=9.2), 59% of them were female. The mean MMSE score was 16.70 (SD=7.24), and the mean EQ-5D score was 0.40 (SD=0.34). The average annual cost of dementia was 6,432 Euros per patient living at home and 6,086 Euros per patient living in nursing homes. For the whole demented population (based on EuroCoDe data) we estimated total annual costs of 846.8 million Euros; of which 55% are direct costs, 9% indirect costs and 36% informal care cost. Compared to acute myocardial infarction the total disease burden of dementia is 26.3 times greater. CONCLUSIONS: This is the first study investigating resource utilisation, costs, and quality of life of dementia patients in the Central and Eastern European region. Compared to the general population of Hungary EQ-5D values of the demented patients are lower in all age groups. Dementia related costs are much lower in Hungary compared to Western European countries. There is no remarkable difference between the costs of demented patients living at home and in nursing homes, from the societal point of view.

Differences in resource use and costs of dementia care between European countries: baseline data from the ICTUS study.

OBJECTIVES: This study aimed to estimate the costs of formal and informal care of patients with Alzheimer's disease, to compare care costs across European countries and identify potential differences in cost patterns between countries and regions. SETTING: The ICTUS study is a prospective, naturalistic observational study conducted in specialised memory clinics in 12 European countries. In total, 1385 patients diagnosed with Alzheimer's disease were enrolled at baseline. All subjects had a reliable informant (primary caregiver) and informed consent was obtained from patients or their primary caregiver. MAIN OUTCOME MEASURES: Resource utilization data was captured with the RUD Lite (Resource Utilization in Dementia) instrument and caregiver burden with the Zarit Burden Interview (ZBI). Patient disease severity was measured with the Mini-Mental State Examination (MMSE), Alzheimer's Disease Assessment Scale-Cognitive subscale (ADAS-cog), Katz´ index (PADL), Instrumental activities of daily living (IADL) scale and Neuropsychiatric inventory (NPI). RESULTS: The mean annual cost of care per patient was estimated to €7,820 (95% CI: €7,194-€8,446), whereof 54% were costs of informal care, 16% direct medical costs and 30% community care costs. There were substantial differences in total resource utilization and also in the balance between formal and informal care between Northern, Western and Southern Europe. PADL scores were strongly associated with formal care costs while IADL scores correlated strongly with informal care costs. CONCLUSIONS: Costs of Alzheimer's disease are high across European countries. Activities of daily living is an important determinant of care costs. Formal care service use is lower and informal care higher in Southern Europe compared to Western and Northern Europe. Differences in resource utilization patterns are important to consider in international studies of dementia care costs as well as in economic evaluations of new treatments for dementia.

The Resource Utilization in Dementia (RUD) instrument is valid for assessing informal care time in community-living patients with dementia.

OBJECTIVE: Informal care is a significant component of the societal resource use and costs in dementia care. Thus it is fundamental that assessments of informal care are valid. Thus the aim was to analyse the validity of time estimates with the Resource Utilization in Dementia (RUD) instrument. DESIGN: Prospective observational study. SETTING: Community sample. PARTICIPANTS: Fourteen married and cohabiting patient-caregiver pairs. MEASUREMENTS: Comparisons of estimates of caregiver time by recall with the RUD instrument, by diaries and by direct observation, with calculation of agreement statistics for recall vs. diary and recall vs. direct observation to assess accuracy of the time estimates derived from recall. RESULTS: The patients and their caregivers participated in 47 diaries and 30 observation sessions. The agreement between diaries and recall estimates was high for personal ADL (intra-class correlation (ICC) 0.93), supervision (ICC 0.87) and total time (ICC 0.91) and lower but acceptable for instrumental ADL (ICC 0.75). Regarding observation vs recall estimates, the corresponding figures were for personal ADL (ICC 0.81), for instrumental ADL (ICC 0.74), for supervision (ICC 0.78) and for total time (ICC 0.80). CONCLUSION: The RUD instrument appears to accurately estimate the amount of informal care provided by caregivers to dementia patients.