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      Call for Papers: Sex and Gender in Neurodegenerative Diseases

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      The Aging, Demographics, and Memory Study: Study Design and Methods

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          Abstract

          Objective: We describe the design and methods of the Aging, Demographics, and Memory Study (ADAMS), a new national study that will provide data on the antecedents, prevalence, outcomes, and costs of dementia and ‘cognitive impairment, not demented’ (CIND) using a unique study design based on the nationally representative Health and Retirement Study (HRS). We also illustrate potential uses of the ADAMS data and provide information to interested researchers on obtaining ADAMS and HRS data. Methods: The ADAMS is the first population-based study of dementia in the United States to include subjects from all regions of the country, while at the same time using a single standardized diagnostic protocol in a community-based sample. A sample of 856 individuals age 70 or older who were participants in the ongoing HRS received an extensive in-home clinical and neuropsychological assessment to determine a diagnosis of normal, CIND, or dementia. Within the CIND and dementia categories, subcategories (e.g. Alzheimer’s disease, vascular dementia) were assigned to denote the etiology of cognitive impairment. Conclusion: Linking the ADAMS dementia clinical assessment data to the wealth of available longitudinal HRS data on health, health care utilization, informal care, and economic resources and behavior, will provide a unique opportunity to study the onset of CIND and dementia in a nationally representative population-based sample, as well as the risk factors, prevalence, outcomes, and costs of CIND and dementia.

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          Most cited references7

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          Dementia diagnosis in developing countries: a cross-cultural validation study.

          Research into dementia is needed in developing countries. Assessment of variations in disease frequency between regions might enhance our understanding of the disease, but methodological difficulties need to be addressed. We aimed to develop and test a culturally and educationally unbiased diagnostic instrument for dementia. In a multicentre study, the 10/66 Dementia Research Group interviewed 2885 people aged 60 years and older in 25 centres, most in Universities, in India, China and southeast Asia, Latin America and the Caribbean, and Africa. 729 had dementia and three groups were free of dementia: 702 had depression, 694 had high education (as defined by each centre), and 760 had low education (as defined by each centre). Local clinicians diagnosed dementia and depression. An interviewer, masked to dementia diagnosis, administered the geriatric mental state, the community screening instrument for dementia, and the modified Consortium to Establish a Registry of Alzheimer's Disease (CERAD) ten-word list-learning task. Each measure independently predicted a diagnosis of dementia. In an analysis of half the sample, an algorithm derived from all three measures gave better results than any individual measure. Applied to the other half of the sample, this algorithm identified 94% of dementia cases with false-positive rates of 15%, 3%, and 6% in the depression, high education, and low education groups, respectively. Our algorithm is a sound basis for culturally and educationally sensitive dementia diagnosis in clinical and population-based research, supported by translations of its constituent measures into most languages used in the developing world.
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            National estimates of the quantity and cost of informal caregiving for the elderly with dementia.

            Caring for the elderly with dementia imposes a substantial burden on family members and likely accounts for more than half of the total cost of dementia for those living in the community. However, most past estimates of this cost were derived from small, nonrepresentative samples. We sought to obtain nationally representative estimates of the time and associated cost of informal caregiving for the elderly with mild, moderate, and severe dementia. Multivariable regression models using data from the 1993 Asset and Health Dynamics Study, a nationally representative survey of people age 70 years or older (N = 7,443). National population-based sample of the community-dwelling elderly. Incremental weekly hours of informal caregiving and incremental cost of caregiver time for those with mild dementia, moderate dementia, and severe dementia, as compared to elderly individuals with normal cognition. Dementia severity was defined using the Telephone Interview for Cognitive Status. After adjusting for sociodemographics, comorbidities, and potential caregiving network, those with normal cognition received an average of 4.6 hours per week of informal care. Those with mild dementia received an additional 8.5 hours per week of informal care compared to those with normal cognition (P < .001), while those with moderate and severe dementia received an additional 17.4 and 41.5 hours (P < .001), respectively. The associated additional yearly cost of informal care per case was 3,630 dollars for mild dementia, 7,420 dollars for moderate dementia, and 17,700 dollars for severe dementia. This represents a national annual cost of more than 18 billion dollars. The quantity and associated economic cost of informal caregiving for the elderly with dementia are substantial and increase sharply as cognitive impairment worsens. Physicians caring for elderly individuals with dementia should be mindful of the importance of informal care for the well-being of their patients, as well as the potential for significant burden on those (often elderly) individuals providing the care.
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              Linkage Studies of Cholestasis Familiaris Groenlandica/Byler-Like Disease with Polymorphic Protein and Blood Group Markers

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                Author and article information

                Journal
                NED
                Neuroepidemiology
                10.1159/issn.0251-5350
                Neuroepidemiology
                S. Karger AG
                0251-5350
                1423-0208
                2005
                October 2005
                28 October 2005
                : 25
                : 4
                : 181-191
                Affiliations
                aDivision of General Medicine, Department of Medicine, bVeterans Affairs Center for Practice Management and Outcomes Research, cInstitute for Social Research, dInstitute for Research on Women and Gender, University of Michigan, Ann Arbor, Mich., eDepartment of Psychiatry and Behavioral Sciences, fDepartment of Medicine (Neurology), Duke University Medical Center, Durham, N.C., gColleges of Public Health and Medicine, University of Iowa, Iowa City, Iowa, and hRAND, Santa Monica, Calif., USA
                Article
                87448 Neuroepidemiology 2005;25:181–191
                10.1159/000087448
                16103729
                f734265e-752e-40d4-ac34-2b6f1800d75b
                © 2005 S. Karger AG, Basel

                Copyright: All rights reserved. No part of this publication may be translated into other languages, reproduced or utilized in any form or by any means, electronic or mechanical, including photocopying, recording, microcopying, or by any information storage and retrieval system, without permission in writing from the publisher. Drug Dosage: The authors and the publisher have exerted every effort to ensure that drug selection and dosage set forth in this text are in accord with current recommendations and practice at the time of publication. However, in view of ongoing research, changes in government regulations, and the constant flow of information relating to drug therapy and drug reactions, the reader is urged to check the package insert for each drug for any changes in indications and dosage and for added warnings and precautions. This is particularly important when the recommended agent is a new and/or infrequently employed drug. Disclaimer: The statements, opinions and data contained in this publication are solely those of the individual authors and contributors and not of the publishers and the editor(s). The appearance of advertisements or/and product references in the publication is not a warranty, endorsement, or approval of the products or services advertised or of their effectiveness, quality or safety. The publisher and the editor(s) disclaim responsibility for any injury to persons or property resulting from any ideas, methods, instructions or products referred to in the content or advertisements.

                History
                : 09 May 2005
                Page count
                Figures: 4, References: 38, Pages: 11
                Categories
                Original Paper

                Geriatric medicine,Neurology,Cardiovascular Medicine,Neurosciences,Clinical Psychology & Psychiatry,Public health
                Epidemiologic studies,Aging,Dementia,Population-based studies

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