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

Abstract

BackgroundHealth 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/designThis 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.DiscussionThe 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.

Reasons for Institutionalization of People With Dementia: Informal Caregiver Reports From 8 European Countries

“…Embedded in the RightTimePlaceCare project, 19 an explorative cross-sectional study was conducted in eight countries: England, Estonia, Finland, France, Germany, the Netherlands, Spain and Sweden.…”

“…19 Possible participants were identified by the long-term care facilities through their administration of new admissions. The study population for this study comprised the informal caregivers of each dyad.…”

“…The interviews were performed by trained interviewers with at least a Bachelors-degree in health or social care 19 and were guided by a written manual. Interviewers were instructed to prompt respondents by asking further questions, in order to get to the main reason for institutionalizing their relative to a long-term care facility.…”

Calidad de vida y calidad de los cuidados de las personas con demencia y sus cuidadores informales

“…Este estudio pretendía identificar las best practices ("las mejores prácticas"), entendiendo como best practices aquellas intervenciones evaluadas científicamente y de las cuales tenemos resultados positivos para nuestra población de interés. En dicho estudio participaron ocho países: Alemania, España, Estonia, Finlandia, Francia, Países Bajos, el Reino Unido y Suecia (115).…”

Conocer las reacciones de los cuidadores de pacientes con demencia en un contexto español y europeo

“…El cuestionario CRA consta de 24 ítems en cinco subescalas: autoestima (rango de puntuación 7-35), falta de apoyo familiar (rango , impacto en los problemas financieros (rango 3-15), impacto en la interrupción de las actividades de la vida diaria (rango 5-25) y el impacto en problemas de salud (rango [4][5][6][7][8][9][10][11][12][13][14][15][16][17][18][19][20]. Las respuestas están representadas en una escala de tipo Likert de1 = muy en desacuerdo-5 = totalmente de acuerdo.…”