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Open Access Study protocol

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

Hilde Verbeek1*, Gabriele Meyer2, Helena Leino-Kilpi34, Adelaida Zabalegui5, Ingalill Rahm Hallberg6, Kai Saks7, Maria Eugenia Soto8, David Challis9, Dirk Sauerland10, Jan PH Hamers1 and the RightTimePlaceCare Consortium

Author 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

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Citation and License

BMC Public Health 2012, 12:68  doi:10.1186/1471-2458-12-68

Published: 23 January 2012

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.

Keywords:
Dementia; Long-term care; Professional home care; Nursing homes