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RightTimePlaceCare - Improving health services for European citizens with dementia: Development of best practice strategies for the transition from formal professional public home care to institutional long-term care facilities

RightTimePlaceCare

 

Projektkennung VfD_RightTimePlaceCa_10_001918
Laufzeit von 01/2010 bis 06/2013
Webseitehttp://www.righttimeplacecare.eu/
Status des Projekts abgeschlossen

 

Projektbeschreibung

Fragestellung(en) Work package 2:
To explore the communication with different care providers and the experiences of patients/consumers with dementia and their informal caregivers with intersectional information delivery throughout the trajectory of care from diagnosis to end of life care.
Work package 3:
The overall aim of work package 3 is the generation of data for the development of the best practice strategies.
Objective 1: Factors influencing institutionalisation
To assess the factors influencing the institutionalisation of people with dementia at the time of admission to institutional long-term nursing care facility. A substantial number of studies considered factors associated with institutionalisation of people with dementia. Although many predictors are known it remains unclear if predictors are country specific. There is some evidence that the time of admission to a
long-term care institution varies across Europe. The validity and time of diagnosis, treatment, quality of counselling, availability and use of community based care, cultural aspects and the specifics of the health care system but also variables related to the people with dementia and their informal caregiver like social network, income and mobility may influence the time of admission to institutional long-term nursing care facilities and may explain differences across Europe. Therefore in this study factors influencing institutionalisation (socio-demographics and relationship characteristics, stressors and resources) are examined to describe cross country differences.
Objective 2: Living conditions To describe living conditions of people with dementia and their informal caregivers receiving formal professional home care and institutional long-term care.

The project will be conducted in Estonia, Finland, France, Germany,The Netherlands, Sweden, Spain and United Kingdom.
Hintergrund / Ziele Given the increasing number of patients/consumers with dementia, political action is urgently required to prepare the health care services throughout Europe to deliver cost effective high quality long-term care to people concerned. Currently there is a lack of clinical research data of patients/consumers and informal caregivers to develop best practice strategies for long-term care. RightTimePlaceCare intends to deliver best practice strategies for need-tailored dementia care throughout the dementia care sectors and aims to preserve best available health outcomes for both patients/consumer with dementia and their informal caregivers at affordable cost-benefit ratios. RightTimePlaceCare will describe and analyse the European health, social care and welfare systems, advocacy and informal caregiver support systems for patients/consumers with dementia and intersectorial communication. A European survey will assess the factors influencing the time of admission to long-term institutional nursing care facilities, investigate living conditions and gather clinical data of patients/consumers with dementia and their informal caregivers in long-term formal professional home care and institutional nursing care facilities, and the related economic impact. Consecutively best practice strategies will be developed for intersectorial arrangements needed to improve the effectiveness and efficiency of integrated health care in European dementia care systems, and recommendations for best practice models or interventions in long-term care facilities. RightTimePlaceCare will advance the state of the art in health systems research in dementia care and will improve cooperation between researchers to promote integration and excellence of European dementia care research. The knowledge generated by RightTimePlaceCare will empower the policy and decision makers to manage and reform dementia health care systems in view of common challenges and within the common framework of the EU.
Methodik Work package 2:
Focus group interviews were performed in 8 EU countries. The aim was to generate potential-oriented rather than deficit-oriented concepts in an attempt to explore how intersectorial information delivery could be improved. Focus groups took palce in communities known to provide high standard dementia care (rural, urban or other depending on the country), defined from the perspective of the individual country and with the arguments for the decisions included in the report. Two kinds of focus groups were performed. The first group of participants consisted of professionals working in the dementia care system and the second kind comprised patients/consumers with dementia (at an early stage) and patient advocates and caregivers.
The focus group discussion followed an agreed structure using a joint interview guide and was tape-recorded. The transcripts were analysed following a predefined thematic protocol based on a preliminary content analysis of the focus group discussions in the leading country (Sweden). Country specific results were synthesized and a joint model was developed.



Work package 3:
The current study focuses on long-term care and consists of two strata:
Group 1: People with dementia newly admitted to institutional nursing care facilities (i.e. within one to three months after admission) and their informal caregivers or next of kin;
Group 2: People with dementia who receive professional home care and are at risk of institutionalization (i.e. on the margins of long term care admission)and their informal caregivers or next of kin.
People with dementia had to be older than 65 years.

About 2000 dyads consisting of people with dementia and their informal caregivers were included. Participants were interviewed in personal face to face interviews using a standardized and comprehensive questionnaire. The study was conducted in 8 EU countries.
1) Target number in group one is 800 dyads(i.e. 100 per
country. Considering an expected drop-out rate of 15%, 115 dyads per country were aimed to be included in this setting.
2) Target number in group two is 1200 (i.e. 150 per country),
since we assume that the variance in this group is higher. Considering an expected drop-out rate of 15%, 115 dyads per country were aimed to be included in this setting.
Datenbasis Primärdaten
   Interview (Face to face)  (Stichprobengröße: 2.000)
   Gruppendiskussion/Fokusgruppe  (Stichprobengröße: 143)
Studiendesign Kohortenstudie (prospektiv)
Fokusgruppeninterviews
Untersuchte Geschlechter weiblich und männlich
Untersuchte Altersgruppen von 20 bis 100 Jahre
von 65 bis 100 Jahre
Ergebnisse --

Forschende und kooperierende Einrichtungen

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Stand: 12.02.2015