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Objectives: The implementation of disease‐modifying treatments for Alzheimer's Disease (AD) will require cost‐effective diagnostic processes. As part of The Precision Medicine In AD consortium (PMI‐AD) project, the aim is to analyze the baseline costs of diagnosing early AD at memory clinics in Norway, Slovenia, and the Netherlands. Methods: The costs of cognitive testing and a clinical examination, apolipoprotein E, magnetic resonance imaging (MRI), cerebrospinal fluid (CSF), positron emission tomography and blood‐based biomarkers (BBM), which are used in different combinations in the three countries, were analyzed. Standardized unit costs, adjusted for GDP per capita and based on Swedish conditions were applied. The costs were expressed in euros (€) as of 2019. A diagnostic set comprising clinical examination, cognitive testing, MRI and CSF was defined as the gold standard, with MRI mainly used as an exclusion filter. Results: Cost data were available for 994 persons in Norway, 169 in Slovenia and 1015 in the Netherlands. The mean diagnostic costs were 1478 (95% confidence interval 1433–1523) € in Norway, 851 (731–970) € in Slovenia and 1184 (1135–1232) € in the Netherlands. Norway had the highest unit costs but also the greatest use of tests. With a uniform diagnostic test set applied, the diagnostic costs were 1264 (1238–1291) €, in Norway, 843 (771–914) € in Slovenia and 1184 (1156–1213) € in the Netherlands. There were no major cost differences between the final set of diagnoses. Conclusions: The total costs for setting a diagnosis of AD varied somewhat in the three countries, depending on unit costs and use of tests. These costs are relatively low in comparison to the societal costs of AD. Key points: The introduction of blood‐based biomarkers for detecting Alzheimer's Disease (AD) can change the diagnostic process.Given the expected demands for treatment of cognitive disorders such as AD, the costs and capacity of the diagnostic work‐up are of great importance for care funders and planners.Our study incorporating diagnostic costs from three distinct European regions provides valuable inputs for cost‐effectiveness studies. [ABSTRACT FROM AUTHOR]

Neurodegenerative diseases are one of the most important contributors to morbidity and mortality in the elderly. In Europe, over 14 million people are currently living with dementia, at a cost of over 400 billion EUR annually. Recent advances in diagnostics and approval for new pharmaceutical treatments for Alzheimer's disease (AD), the most common etiology of dementia, heralds the beginning of precision medicine in this field. However, their implementation will challenge an already over-burdened healthcare systems. There is a need for innovative digital solutions that can drive the related clinical pathways and optimize and personalize care delivery. Public-private partnerships are ideal vehicles to tackle these challenges. Here we describe the Innovative Health Initiative (IHI) public-private partnership project PROMINENT that has been initiated by connecting leading dementia researchers, medical professionals, dementia patients and their care partners with the latest innovative health technologies using a precision medicine based digital platform. The project builds upon the knowledge and already implemented digital tools from several collaborative initiatives that address new models for early detection, diagnosis, and monitoring of AD and other neurodegenerative disorders. The project aims to provide support to improvement efforts to each aspect of the care pathway including diagnosis, prognosis, treatment, and data collection for real world evidence and cost effectiveness studies. Ultimately the PROMINENT project is expected to lead to cost-effective care and improved health outcomes. [ABSTRACT FROM AUTHOR]

Background and Objective: The prevalence of dementia is increasing, while new opportunities for diagnosing, treating and possibly preventing Alzheimer's disease and other dementia disorders are placing focus on the need for accurate estimates of costs in dementia. Considerable methodological heterogeneity creates challenges for synthesising the existing literature. This study aimed to estimate the costs for persons with dementia in Europe, disaggregated into cost components and informative patient subgroups. Methods: We conducted an updated literature review searching PubMed, Embase and Web of Science for studies published from 2008 to July 2021 reporting empirically based cost estimates for persons with dementia in European countries. We excluded highly selective or otherwise biased reports, and used a random-effects meta-analysis to produce estimates of mean costs of care across five European regions. Results: Based on 113 studies from 17 European countries, the estimated mean costs for all patients by region were highest in the British Isles (73,712 EUR), followed by the Nordics (43,767 EUR), Southern (35,866 EUR), Western (38,249 EUR), and Eastern Europe and Baltics (7938 EUR). Costs increased with disease severity, and the distribution of costs over informal and formal care followed a North-South gradient with Southern Europe being most reliant on informal care. Conclusions: To our knowledge, this study represents the most extensive meta-analysis of the cost for persons with dementia in Europe to date. Though there is considerable heterogeneity across studies, much of this is explained by identifiable factors. Further standardisation of methodology for capturing resource utilisation data may further improve comparability of future studies. The cost estimates presented here may be of value for cost-of-illness studies and economic evaluations of novel diagnostic technologies and therapies for Alzheimer's disease. [ABSTRACT FROM AUTHOR]

Background: For care planning and support, under-detection and late diagnosis of Alzheimer's disease (AD) is a great challenge. Models of Patient-Engagement for Alzheimer's Disease (MOPEAD) is an EU-funded project aiming at testing different strategies to improve this situation.Objective: To make a cost-consequence analysis of MOPEAD.Methods: Four screening strategies were tested in five countries (Germany, the Netherlands, Slovenia, Spain, and Sweden): 1) a web-approach; 2) Open-House initiative; 3) in primary care; and 4) by diabetes specialists. Persons-at-risk of AD in all strategies were offered referral to a hospital-based specialist. The primary health-economic outcome was the cost per true-positive case (TP) of AD from the screened population.Results: Of 2,847 screened persons, 1,121 screened positive (39%), 402 were evaluated at memory clinics (14%), and 236 got an AD diagnosis (8%). The cost per TP of those screened was €3,115 with the web-approach, €2,722 with the Open-House, €1,530 in primary care, and €1,190 by diabetes specialists. Sensitivity analyses that more likely reflect the real-world situation confirmed the results. The number-needed-to-screen was 30 with the web-approach, 8 with the Open-House and primary care, and 6 with the diabetes specialists.There were country differences in terms of screening rates, referrals to memory clinics, staff-types involved, and costs per TP.Conclusion: In primary care and by the diabetes specialist, the costs per TP/screened population were lowest, but the capacity of such settings to identify cases with AD-risk must be discussed. Hence new diagnostic strategies such as web-solutions and Open-House initiatives may be valuable after modifications. [ABSTRACT FROM AUTHOR]

Objectives: Previously developed dementia caregiver profiles defined by caregiver age and burden, have been associated with caregiver quality of life, depression and perseverance time. The current aim was to investigate whether these caregiver profiles could predict subsequent service use. In addition, non-personal (e.g. meals on wheels) and supportive services (e.g. Alzheimer café) in early dementia were investigated as predictors. Methods: A total of 451 dyads of people with dementia and their informal caregivers from eight European countries were followed for one year. People were included if they did not use formal (personal) care but were expected to do so within 1 year. Logistic regression analyses were used with four clusters of service use as dependent variables (home social care, home personal care, day care and admission). The independent variables were caregiver profiles, and non-personal and supportive services at baseline. Results: Caregiver profiles were significant predictors of service use; those experiencing high strain were more likely to use formal care. The use of low-intensity, less intrusive services at baseline significantly predicted the use of home personal care and admission at follow-up. The use of day care at follow-up was predicted by the baseline use of supportive services. Conclusion: Caregiver profiles are valuable predictors for service use: this knowledge can aid professionals in ensuring optimal access to services, which is important for maintaining independence at home. In addition, the use of supportive and less intrusive, non-personal services in the early stages of dementia is to be advised. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Objectives: In the current study, the Anderson model is used to determine equitable access to dementia care in Europe. Predisposing, enabling, and need variables were investigated to find out whether there is equitable access to dementia-specific formal care services. Results can identify which specific factors should be a target to improve access.Methods: A total of 451 People with middle-stage dementia and their informal carers from eight European countries were included. At baseline, there was no use of formal care yet, but people were expected to start using formal care within the next year. Logistic regressions were carried out with one of four clusters of service use as dependent variables (home social care, home personal care, day care, admission). The independent variables (predisposing, enabling, and need variables) were added to the regression in blocks.Results: The most significant predictors for the different care clusters are disease severity, a higher sum of (un)met needs, hours spent on informal care, living alone, age, region of residence, and gender.Conclusion: The Andersen model provided for this cohort the insight that (besides need factors) the predisposing variables region of residence, gender, and age do play a role in finding access to care. In addition, it showed us that the numbers of hours spent on informal care, living alone, needs, and disease severity are also important predictors within the model's framework. Health care professionals should pay attention to these predisposing factors to ensure that they do not become barriers for those in need for care. [ABSTRACT FROM AUTHOR]

Background: Country differences in resource use and costs of Alzheimer's disease (AD) may be driven by differences in health care systems and resource availability.Objective: To compare country resource utilization drivers of societal costs for AD dementia over 18 months.Methods: GERAS is an observational study in France (n = 419), Germany (n = 550), and the UK (n = 526). Resource use of AD patients and caregivers contributing to >1% of total societal costs (year 2010) was assessed for country differences, adjusting for participant characteristics.Results: Mean 18-month societal costs per patient were France €33,339, Germany €38,197, and UK €37,899 (£32,501). Caregiver time spent on basic and instrumental activities of daily living (ADL) contributed the most to societal costs (54% France, 64% Germany, 65% UK). Caregivers in France spent less time on ADL than UK caregivers and missed fewer work days than in other countries. Compared with other countries, patients in France used more community care services overall and were more likely to use home aid. Patients in Germany were least likely to use temporary accommodation or to be institutionalized at 18 months. UK caregivers spent the most time on instrumental ADL, UK patients used fewest outpatient resources, and UK patients/caregivers were most likely to receive financial support.Conclusion: Caregiver time on ADL contributed the most to societal costs and differed across countries, possibly due to use of community care services and institutionalization. Other resources had different patterns of use across countries, reflecting country-specific health and social care systems. [ABSTRACT FROM AUTHOR]

Background: Previous findings indicate that people with dementia and their informal carers experience difficulties accessing and using formal care services due to a mismatch between needs and service use. This mismatch causes overall dissatisfaction and is a waste of the scarce financial care resources. This article presents the background and methods of the Actifcare (ACcess to Timely Formal Care) project. This is a European study aiming at best-practice development in finding timely access to formal care for community-dwelling people with dementia and their informal carers. There are five main objectives: 1) Explore predisposing and enabling factors associated with the use of formal care, 2) Explore the association between the use of formal care, needs and quality of life and 3) Compare these across European countries, 4) Understand the costs and consequences of formal care services utilization in people with unmet needs, 5) Determine the major costs and quality of life drivers and their relationship with formal care services across European countries.Methods: In a longitudinal cohort study conducted in eight European countries approximately 450 people with dementia and informal carers will be assessed three times in 1 year (baseline, 6 and 12 months). In this year we will closely monitor the process of finding access to formal care. Data on service use, quality of life and needs will be collected.Discussion: The results of Actifcare are expected to reveal best-practices in organizing formal care. Knowledge about enabling and predisposing factors regarding access to care services, as well as its costs and consequences, can advance the state of the art in health systems research into pathways to dementia care, in order to benefit people with dementia and their informal carers. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Alzheimer's disease (AD) is a leading cause of disability in the elderly, leading to a high burden on caregivers and costs to society. This article describes the current level of data availability regarding the costs of AD in Europe, summarizes and compares findings from previous studies in different countries, and discusses the applicability of available data for modelling purposes. A literature review was conducted for papers in any language reporting data on costs of care for patients with diagnosed dementia or possible/probable AD. Only papers reporting patient-level data on costs were included. A total of 16 studies were identified: from the Nordic region (4), the UK (3), Spain (3), France (2), Italy (2), Belgium (1) and Germany (1). There is large variation in total cost estimates, depending on, for example, differences in study methodology, setting, type and severity of patients included, range of costs assessed and the choice of principle for valuing informal care. The median value for total annual care costs in all studies was €28 000 (range €6614-€64 426) [year 2005 values]. Few studies assessed aspects of disease severity other than cognitive function. The costs of AD in Europe are substantial and increase with disease severity. Methodological differences between studies make comparison across countries and healthcare systems difficult, and there is a need to standardize methods for assessing and valuing informal care. Patient-level information on resource use is required to analyse determinants of care costs and predict the impact of therapeutic interventions. More data are needed to support future economic evaluations of therapies for AD. [ABSTRACT FROM AUTHOR]

This exploratory study aimed at investigating profiles of care needs in people with mild to moderate dementia and examined variables associated with these profiles. A longitudinal international cohort study. The baseline data of 447 community-dwelling dyads of people with dementia and their caregivers from the Access to Timely Formal Care (Actifcare) Study were included for analysis. A latent class analysis was applied to identify profiles of needs, measured with the Camberwell Assessment of Need for the Elderly as rated by the caregiver. We examined sociodemographic (eg, relative stress scale) and clinical characteristics (eg, neuropsychiatric inventory) associated with these profiles. Four distinct need profiles were identified through latent class analysis. These comprised a "no need" profile (41% of the sample), a "met psychological needs" profile (25%), a "met social needs" profile (19%), and an "unmet social needs" profile (15%). A larger impact of caregiving on the caregiver's life as indicated by a higher relative stress scale score was associated with the "unmet social needs" profile. In this large European sample, there was a subgroup of persons with dementia with high "unmet social needs" whose caregivers simultaneously perceived high stress in their caregiving tasks. Identification of these profiles may help provision of appropriate support for these people. [ABSTRACT FROM AUTHOR]

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

β-amyloid-targeting antibodies represent the first generation of effective causal treatment of Alzheimer's disease (AD) and can be considered historical research milestones. Their effect sizes, side effects, implementation challenges and costs, however, have stimulated debates about their overall value. In this position statement academic clinicians of the European Alzheimer's Disease Consortium (EADC) discuss the critical relevance of introducing these new treatments in clinical care now. Given the complexity of AD it is unlikely that molecular single-target treatments will achieve substantially larger effects than those seen with current β-amyloid-targeting antibodies. Larger effects will most likely only be achieved incrementally by continuous optimization of molecular approaches, patient selection and combinations therapies. To be successful in this regard, drug development must be informed by the use of innovative treatments in real world practice, because full understanding of all facets of novel treatments requires experience and data of real-world care beyond those of clinical trials. Regarding the antibodies under discussion we consider their effects meaningful and potential side effects manageable. We assume that the number of eventually treated patient will only be a fraction of all early AD patients due to narrow eligibility criteria and barriers of access. We strongly endorse the use of these new compound in clinical practice in selected patients with treatment documentation in registries. We understand this as a critical step in advancing the field of AD treatment, and in shaping the health care systems for the new area of molecular-targeted treatment of neurodegenerative diseases., Competing Interests: D. Aarsland reports personal fees for advice and lectures from Eisai, Biogen, Eli Lilly, EIP Pharma, Roche Diagnostics, Sanofi, and Heptares, and grants from Roche Diagnostics, Sanofi and Evonik. D. Angioni reports being an investigator in clinical trials sponsored by Alector, Alzheon, Biogen, Eisai, Genentech, Green Valley, Hoffmann-La Roche, Janssen, Medesis Pharma, Nestle, Novo Nordisk, Otsuka, Regenlife, Toulouse University Hospital, and UCB Pharma. No direct personal benefit. M. Balasa reports no conflict of interest. M. Boban reports no conflict of interest. K. Bennys reports grants form Alzheon Inc, Araclon Biotech S.L., Biogen, Eisai, Roche Genentech. No personal fees. M. Boada reports fees for advice from Grifols, Araclon, Biotech, Roche, Biogen, Lilly, Merck, Zambon, Novo Nordisk, Bioiberica, Eisai, Servier, and Schwabe Pharma; fees for lectures from Roche, Biogen, Grifols, Nutricia, Araclon Biotech, Servier, and Novo Nordisk. A. Chincarini reports no conflict of interest. S. Engelborghs reports fees from Eisai, icometrix, Novartis, Roche all paid to institution, and personal fees from Roche and Biogen. L. Exalto received personal fees from Julius Clinical and Brain Research Center. A. Felbecker reports personal fees for advisory boards and lectures from Eisai, Eli Lilly, Schwabe Pharma AG, Ompharma, Roche Pharma, Specialty care Therapiezentren AG, and grants from Fujirebio. K. Fliessbach reports no conflict of interest. G.B. Frisoni reports funding through the Private Foundation of Geneva University Hospitals from: A.P.R.A. – Association Suisse pour la Recherche sur la Maladie d’Alzheimer, Genève; Fondation Segré, Genève; Ivan Pictet, Genève; Race Against Dementia Foundation, London, UK; Fondation Child Care, Genève; Fondation Edmond J. Safra, Genève; Fondation Minkoff, Genève; Fondazione Agusta, Lugano; McCall Macbain Foundation, Canada; Nicole et René Keller, Genève; Fondation AETAS, Genève. He has received funding through the University of Geneva or Geneva University Hospitals: for IISSs from ROCHE Pharmaceuticals OM Pharma EISAI Pharmaceuticals Biogen Pharmaceuticals and Novo Nordisk; for competitive research projects from: H2020, Innovative Medicines Initiative (IMI), IMI2, Swiss National Science Foundation, and VELUX Foundation as well as payment or honoraria for lectures, presentations, speakers bureaus, manuscript writing, or educational events from: Biogen, Roche, Novo Nordisk, GE HealthCare, all through the institution. A.J. Garza-Martinez reports no conflict of interest. T. Grimmer reports consulting fees from AbbVie, Advantage Therapeutics Alector, Anavex, Biogen, BMS, Cogthera, Iqvia, Noselab, NuiCare, Orphanzyme Eisai, Eli Lilly, Functional Neuromodulation, Grifols, Janssen, Novo Nordisk, Roche Pharma, UCB, and Vivoryon, and lecture fees from Biogen, Eisai, Grifols, Medical Tribune, Schwabe, Synlab, Novo Nordisk, and Roche Pharma. Her served as Principal Investigator in drug trials by AbbVie, Advantage Therapeutics, Alector, Anavex, Biogen, Eli Lilly, Functional Neuromodulation, Roche Pharma, UCB, and Vivoryon; The Institution received payment for study performance. Further grants to his institution from: Biogen and Eisai and Roche Diagnostics. L. Froelich reports grants and personal fees for lectures and advice from Roche, and personal fees for lectures and advice from Eisai, Araclon/Grifols, Eli Lilly, Noselab, NovoNordisk, BioVie, Biogen, MerckSharpe and Dohme, Neurimmune, TauRX, Dr. Willmar Schwabe Otsuka/Avanir, Axon Neuroscience, Pharmatropix, Neuroscios, Vivoryon, Hummingbird, Anavex, and Boehringer Ingelheim. B. Hanseeuw reports personal fees for advice and lectures from Eisai, Roche, Biogen, and grants from Fonds National de la Recherche Scientifique, Fondation Stop Alzheimer, and WEL Research institute (WELBIO). J. Hort reports consulting and lecture fees from Schwabe, Eisai, and Eli Lilly and holds stock options in Alzheon. A. Ivanoiu reports no conflict of interest. F. Jessen has reports honoraria for advisory boards and presentations from Abbvie, AC immune, Biogen, Eli Lilly, Eisai, GE Healthcare, Grifols, Janssen-Cliag and Roche. L. Krajcovicova reports no conflict of interest. S. Klöppel reports fees for advice and lectures from Biogen, Eisai Switzerland, Lundbeck, and OM Pharma. M.G. Kramberger reports no conflict of interest. B. McGuinness reports personal fees from Eisai, Biogen, Eli Lilly, and Nutricia. P. Mecocci reports personal fees for advice and lectures from Lundbeck and Lilly, and non-financial support from Merck. A. de Mendonca reports no conflict of interest. A. Nous reports no conflict of interest. P.J. Dr. Ousset reports research grants from Acadia Pharmaceuticals, Alzheon Inc., Araclon Biotech S.L., AstraZeneca, Biogen, Avanir Pharmaceuticals, Eisai Inc., Eli Lilly, Genentech, Inc., Hoffmann-La Roche, Janssen Research and Development, Merck Sharp and Dohme, Novartis Pharmaceuticals, Shanghai Greenvalley Pharmaceutical Co., TauRx Therapeutics Ltd, UCB Biopharma without personal fee. He reports personal fees for advice from Lilly France. C. Paquet reports no conflict of interest. R. Perneczky reports personal fees for advice and lectures from Biogen, Eisai, Eli Lilly, Grifols, Novo Nordisk Roche, Schwabe, and GSK, and grants from Astra Zeneca, Roche, Janssen Cilag, Eli Lilly, and Takeda. O. Peters reports grants from Alector and Predemtec, grants and personal fees for advice and lectures from Biogen, Eisai, Roche, Noselab, and Novo Nordisk, personal fees for advice and lectures from Grifols, Lilly, Prinnovation, Medtrix, Neurolive, and Neurotransdata. F. Piazza reports consulting fees from Alector, Araclon, Alnylam, Biogen, Lilly, and Roche, and personal honoraria for advisory board membership from Roche, Araclon and Lilly. He holds a patent for the ultrasensitive quantification of anti-amyloid antibodies in human biological fluids. D. Platone reports no conflict of interest. M. Riverol reports personal fees for advice and lectures from Grifols, Nutricia and Esteve. A. Ruiz reports grants from the Instituto de Salud Carlos III (ISCIII), the European Comision-IMI program, the EU-JPND , VLAIO, Janssen, Grifols SA, Roche AG, and Araclon Biotech; and personal fees from Landstenier Genmed, Glenn Biggs Institute, UTHSA, Fundación ADEY, and Novo Nordisk. G. Sacco reports no conflict of interest. I. Santana reports grants from Biogen, and personal fees from Eisai. N. Scarmeas reports grants from NIH, and NovoNordisc. E. Solje reports personal fees from Novartis, Novo Nordisk, Eisai, and Roche and personal fees from Roche. E. Stefanova reports no conflict of interest. S. Sutovsky reports lecture fees from Eisai, Biogen, Schwabe and Krka. M. Tabuas-Pereira reports no conflict of interest. W. van der Flier reports grants from ZonMW, NWO, EU-JPND, EU-IHI, Alzheimer Nederland, Hersenstichting CardioVascular Onderzoek Nederland, Health~Holland, Topsector Life Sciences and Health, stichting Dioraphte, Gieskes-Strijbis fonds, stichting Equilibrio, Edwin Bouw fonds, Pasman stichting, stichting Alzheimer and Neuropsychiatrie Foundation, Philips, Biogen MA Inc, Novartis-NL, Life-MI, AVID, Roche BV, Fujifilm, Eisai, Combinostics. She holds the Pasman chair. She is recipient of ABOARD, which is a public-private partnership receiving funding from ZonMW (#73305095007) and Health~Holland, Topsector Life Sciences and Health (PPP-allowance; #LSHM20106). She is recipient of TAP-dementia (www.tap-dementia.nl), receiving funding from ZonMw (#10510032120003). TAP-dementia receives co-financing from Avid Radiopharmaceuticals and Amprion. All funding is paid to her institution. She reports fees to the institution for lectures from Biogen MA Inc, Danone, Eisai, WebMD Neurology (Medscape), Novo Nordisk, Springer Healthcare, and European Brain Council. She consulted the Oxford Health Policy Forum CIC, Roche, Biogen MA Inc, and Eisai. All funding is paid to her institution. WF participated in advisory boards of Biogen MA Inc, Roche, and Eli Lilly. WF is member of the steering committee of EVOKE/EVOKE+ (NovoNordisk). All funding is paid to her institution. WF is member of the steering committee of PAVE, and Think Brain Health. WF was associate editor of Alzheimer, Research and Therapy in 2020/2021. WF is associate editor at Brain. T. Welsh is Research and Medical Director of The Research Institute for the Care of Older People (RICE), Bath, UK, which runs a mixture of commercial and non-commercial research activity. Commercial research projects run in the Institute have been funded by: Lilly, Roche, Biogen, Eisai, Janssen, AC Immune, Novo Nordisk, Pfizer, Elan, Immunobrain, Actinogen, and Julius Clinical. A. Wimo report to be the License holder (part) of RUD instrument. B. Winblad reports no conflict of interest.

Purpose: Informal care constitutes an important part of the total care for people with dementia. Therefore, the impact of the syndrome on their caregivers as well as that of health and social care services for people with dementia should be considered. This study investigated the convergent and clinical validity of the CarerQol instrument, which measures and values the impact of providing informal care, in a multi-country sample of caregivers for people with dementia., Methods: Cross-sectional data from a sample of 451 respondents in eight European countries, collected by the Actifcare project, were evaluated. Convergent validity was analysed with Spearman's correlation coefficients and multivariate correlations between the CarerQol-7D utility score and dimension scores, and other similar quality of life measures such as CarerQol-VAS, ICECAP-O, and EQ-5D. Clinical validity was evaluated by bivariate and multivariate analyses of the degree to which the CarerQol instrument can differentiate between characteristics of caregivers, care receivers and caregiving situation. Country dummies were added to test CarerQol score differences between countries., Results: The mean CarerQol utility score was 77.6 and varied across countries from 74.3 (Italy) to 82.3 (Norway). The scores showed moderate to strong positive correlations with the CarerQol-VAS, ICECAP-O, and EQ-5D health problems score of the caregiver. Multivariate regression analysis showed that various characteristics of the caregiver, care receiver and caregiving situation were associated with caregiver outcomes, but there was no evidence of a country-level effect., Conclusion: This study demonstrates the convergent and clinical validity of the CarerQol instrument to evaluate the impact of providing informal care for people with dementia.

Purpose: The pressure on healthcare budgets remains high, partially due to the ageing population. Economic evaluation can be a helpful tool to inform resource allocation in publicly financed systems. Such evaluations frequently use health-related outcome measures. However, in areas such as care of older people, improving health outcomes is not necessarily the main focus of care interventions and broader outcome measures, including outcomes for those providing informal care, may be preferred when evaluating such interventions. This paper validates a recently introduced well-being measure, the ICECAP-O, in a population of informal carers for people with dementia from eight European countries., Methods: Convergent and discriminant validity tests were performed to validate the ICECAP-O using data obtained in a sample of 451 respondents from Germany, Ireland, Italy, the Netherlands, Norway, Portugal, Sweden and the UK. These respondents completed a number of standardized questionnaires within the framework of the Actifcare project., Results: The ICECAP-O performed well among informal carers, in terms of both convergent and discriminant validity. In the multivariate analysis, it was found to be significantly associated with the age of the person with dementia, EQ-5D-5L health problem index of the person with dementia, carer-patient relationship, care recipient CDR, carer LSNS Score, the PAI score, and Perseverance Time., Conclusion: The ICECAP-O appears to be a valid measure of well-being in informal carers for people with dementia. The ICECAP-O may therefore be useful as an outcome measure in economic evaluations of interventions aimed at such informal carers, when these aim to improve well-being beyond health.

In most, if not all health systems, dementia is underdiagnosed, and when diagnosis occurs, it is typically at a relatively late stage in the disease process despite mounting evidence showing that a timely diagnosis would result in numerous benefits for patients, families, and society. Moving toward earlier diagnoses in Alzheimer's disease (AD) requires a conscientious and collective effort to implement a global strategy addressing the multiple causes hindering patient engagement at different levels of society. This article describes the design of the Models of Patient Engagement for Alzheimer's Disease project, an ongoing EU-funded public-private multinational initiative that will compare four innovative patient engagement strategies across five European countries regarding their ability to identify individuals with prodromal AD and mild AD dementia, which are "hidden" in their communities and traditionally not found in the typical memory clinic setting. The strategies include an online AD citizen science platform, an open house initiative at the memory clinics, and patient engagement at primary care and diabetologist clinics., (Copyright © 2019 The Authors. Published by Elsevier Inc. All rights reserved.)

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.

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.

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

Background: To identify the main factors associated with societal costs of Alzheimer's disease (AD) in community-dwelling patients across three European countries., Methods: Baseline cost data from a prospective, observational study were used. Assessments included patients' cognition, activities of daily living (ADLs) and behavioral symptoms, and caregiver burden. Cost calculations (2010) from the societal perspective were based on patient/caregiver resource use. Generalized linear models estimated factors associated with costs., Results: Mean monthly costs per patient differed for France (€1881), Germany (€2349), and the UK (€2016), with informal care costs accounting for 50% to 61%. Independent factors associated with costs across all countries were ADL total score, patient living arrangements, caregiver working status, and caregiver burden (all P < .05). Additional factors were significant for the pooled cohort or individual countries., Conclusions: Several patient and caregiver factors, including factors associated with informal care, should be included when evaluating care options for patients with AD., (Copyright © 2015 The Alzheimer's Association. Published by Elsevier Inc. All rights reserved.)

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., (Copyright © 2010 John Wiley & Sons, Ltd.)

The social consequences of Alzheimer's disease are highlighted in this review with regard to impact on family situation, a changing treatment context caused by demographic changes, reorganization of long-term care, a financial crisis in the public health systems and the introduction of antidementia drugs. In the early phase of dementia there may be significant consequences for the patients and the family members which are largely unrecognized by the healthcare system. As the disease progresses, the impact on caregivers in terms of physical and emotional burden, financial and employment status may be enormous. The current care provision in Sweden, the UK and The Netherlands is described. Innovative care alternatives and strategies may improve the situation. The introduction of antidementia drugs such as the acetylcholine esterase inhibitors may also contribute to improved circumstances for patients and caregivers. There is still a great need for further research in this field.