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      A European study investigating patterns of transition from home care towards institutional dementia care: the protocol of a RightTimePlaceCare study

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          Abstract

          Background

          Health care policies in many countries aim to enable people with dementia to live in their own homes as long as possible. However, at some point during the disease the needs of a significant number of people with dementia cannot be appropriately met at home and institutional care is required. Evidence as to best practice strategies enabling people with dementia to live at home as long as possible and also identifying the right time to trigger admission to a long-term nursing care facility is therefore urgently required. The current paper presents the rationale and methods of a study generating primary data for best-practice development in the transition from home towards institutional nursing care for people with dementia and their informal caregivers. The study has two main objectives: 1) investigate country-specific factors influencing institutionalization and 2) investigate the circumstances of people with dementia and their informal caregivers in eight European countries. Additionally, data for economic evaluation purposes are being collected.

          Methods/design

          This paper describes a prospective study, conducted in eight European countries (Estonia, Finland, France, Germany, Netherlands, Sweden, Spain, United Kingdom). A baseline assessment and follow-up measurement after 3 months will be performed. Two groups of people with dementia and their informal caregivers will be included: 1) newly admitted to institutional long-term nursing care facilities; and 2) receiving professional long-term home care, and being at risk for institutionalization. Data will be collected on outcomes for people with dementia (e.g. quality of life, quality of care), informal caregivers (e.g. caregiver burden, quality of life) and costs (e.g. resource utilization). Statistical analyses consist of descriptive and multivariate regression techniques and cross-country comparisons.

          Discussion

          The current study, which is part of a large European project 'RightTimePlaceCare', generates primary data on outcomes and costs of long-term nursing care for people with dementia and their informal caregivers, specifically focusing on the transition from home towards institutional care. Together with data collected in three other work packages, knowledge gathered in this study will be used to inform and empower patients, professionals, policy and related decision makers to manage and improve health and social dementia care services.

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          Most cited references 28

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          "Mini-mental state". A practical method for grading the cognitive state of patients for the clinician.

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            A new method of classifying prognostic comorbidity in longitudinal studies: Development and validation

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              A new method of classifying prognostic comorbidity in longitudinal studies: development and validation.

              The objective of this study was to develop a prospectively applicable method for classifying comorbid conditions which might alter the risk of mortality for use in longitudinal studies. A weighted index that takes into account the number and the seriousness of comorbid disease was developed in a cohort of 559 medical patients. The 1-yr mortality rates for the different scores were: "0", 12% (181); "1-2", 26% (225); "3-4", 52% (71); and "greater than or equal to 5", 85% (82). The index was tested for its ability to predict risk of death from comorbid disease in the second cohort of 685 patients during a 10-yr follow-up. The percent of patients who died of comorbid disease for the different scores were: "0", 8% (588); "1", 25% (54); "2", 48% (25); "greater than or equal to 3", 59% (18). With each increased level of the comorbidity index, there were stepwise increases in the cumulative mortality attributable to comorbid disease (log rank chi 2 = 165; p less than 0.0001). In this longer follow-up, age was also a predictor of mortality (p less than 0.001). The new index performed similarly to a previous system devised by Kaplan and Feinstein. The method of classifying comorbidity provides a simple, readily applicable and valid method of estimating risk of death from comorbid disease for use in longitudinal studies. Further work in larger populations is still required to refine the approach because the number of patients with any given condition in this study was relatively small.
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                Author and article information

                Journal
                BMC Public Health
                BMC Public Health
                BMC Public Health
                BioMed Central
                1471-2458
                2012
                23 January 2012
                : 12
                : 68
                Affiliations
                [1 ]Department of Health Services Research, CAPHRI School for Public Health and Primary Care, Maastricht University, P.O. Box 616, 6200 MD Maastricht, the Netherlands
                [2 ]School of Nursing Science, Faculty of Health, Witten/Herdecke University, Witten, Germany
                [3 ]Department of Nursing Science, Faculty of Medicine, University of Turku, Turku, Finland
                [4 ]South-West Hospital District of Finland, Turku, Finland
                [5 ]Fundacíó Privada Clinic per la Recerca Biomedica, Hospital Clinic of Barcelona, Barcelona, Spain
                [6 ]Lund University, Lund, Sweden
                [7 ]Department of Internal Medicine, University of Tartu, Tartu, Estonia
                [8 ]Department of Geriatric Medicine, Toulouse University Hospital, Toulouse, France
                [9 ]Personal and Social Services Research Unit, Faculty of Medical and Human Sciences, University of Manchester, Manchester, UK
                [10 ]Faculty of Management and Economics, Witten/Herdecke University, Witten, Germany
                Article
                1471-2458-12-68
                10.1186/1471-2458-12-68
                3328268
                22269343
                Copyright ©2012 Verbeek et al; licensee BioMed Central Ltd.

                This is an Open Access article distributed under the terms of the Creative Commons Attribution License ( http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

                Categories
                Study Protocol

                Public health

                dementia, long-term care, professional home care, nursing homes

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