RightTimePlaceCare Improving health service for European citizens with dementia: Best practice strategies development for transition from formal professional home care to institutional long-term nursing care facilities Astrid Stephan, project manager, research fellow, doctoral student astrid.stephan@medizin.uni-halle.de Prof. Dr. Gabriele Meyer, scientific coordinator Witten/Herdecke University & Martin-Luther-University Halle-Wittenberg
RightTimePlaceCare Consortium Lund University, Sweden University of Turku, Finland University of Tartu, Estonia Manchester University, England Maastricht University, The Netherlands University of Witten/Herdecke, Germany University of Toulouse, France Hospital Clinic of Barcelona, Spain Disciplines: Nursing scientists, geriatricians, old age psychiatrists, psychologists, economists, social scientists
MAIN OBJECTIVE RightTimePlaceCare aims to develop "Best Practice Strategies" for dementia care of PwD and their caregiving relatives especially in the situation of transition from home care to institutional long-term nursing care facilities.
Work packages WP 1 Management (Germany) WP 2 Description of longterm care/ Intersectoral communication (Sweden) WP 3 Survey on longterm care (The Netherlands) WP 4 Economic evaluation (Germany) WP 5 Development of Best Practice (Estonia, Spain, England) WP 6 Dissemination (Germany)
WP3 - Survey 1. Factors associated with nursing home admission in people with dementia 2. Quality of care and quality of life in older people with dementia 3. Burden of caregivers of people with dementia
Participants WP3 Home care At risk Nursing home 1223 Living at home 791 recently admitted (116 Germany) 126 transition (119 in Germany) home nursing home (7 in Germany) 950 after 3 months 650 after 3 months
Factors associated with nursing home admission Large variety in factors No unequivocal predictor in EU Most important factors Dependency in performing activities of daily living Having behavioral problems High burden of informal caregivers
Quality of life: people with dementia Nursing home Home EU mean Germany England Estonia Finland France Netherlands Spain Sweden
Quality of care: nursing home (example) Many pressure ulcers - Estonia: 14% (EU mean: 7%) Many physical restraints: - Spain: 83% - Estonia: 48% - Finland: 40% (EU mean: 32%) Many psychotropic medications: - France: 90% - Spain: 81% (EU mean: 70%)
Caregiver burden at home and nursing home 40 35 30 25 20 15 10 Home Nursing home 5 0
WP5 - Selected main results The pattern of admissions to institutional longterm care facilities did not regularly correspond with recommendations by experts that were retrieved from structured group discussions of typical case vignettes based on WP3 data. The availability of enhanced community services could allow at least a quarter of people with dementia currently admitted to institutional longterm care facilities to be more appropriately supported in their own homes.
WP5 - Selected main results The findings provide information about the types of people with dementia in each participating country who would be affected by such restructuring. The results suggest that there could be a potential to save significant resources that could be reinvested in the community.
RightTimePlaceCare: PhD-projects 11 PhD students (UK, Spain, Sweden, Finland, the Netherlands and Germany) Focus on specific aspects E.g., Quality of life, informal care, medication use, country-specific PhD meetings Barcelona, 2012 Turku, 2013 Rennes, 2014
Perspectives
Overview of publications Verbeek H, Meyer G, Leino-Kilpi H, Zabalegui A, Hallberg IR, Saks K, Soto ME, Challis D, Sauerland D, Hamers JP; RightTimePlaceCare Consortium. A European study investigating patterns of transition from home care towards institutional dementia care: the protocol of a RightTimePlaceCare study. BMC Public Health 2012; 12: 68 Beerens HC, Sutcliffe C, Renom-Guiteras A, Soto ME, Suhonen R, Zabalegui A, Bökberg C, Saks K, Hamers JP; on behalf of the RightTimePlaceCare Consortium. Quality of Life of and Quality of Care for People with Dementia Receiving Long Term Institutional Care or Professional Home Care: The European RightTimePlaceCare Study. J Am Med Dir Assoc 2014; 15: 54-61 Afram B, Stephan A, Verbeek H, Bleijlevens MH, Suhonen R, Sutcliffe C, Raamat K, Cabrera E, Soto ME, Hallberg IR, Meyer G, Hamers JP; RightTimePlaceCare Consortium. Reasons for Institutionalization of People With Dementia: Informal Caregiver Reports From 8 European Countries. J Am Med Dir Assoc 2014; 15: 108-16 Hallberg IR, Leino-Kilpi H, Meyer G, Raamat K, Soto Martin M, Sutcliffe C, Zabalegui A: Dementia care in eight European Countries: Developing a mapping system to explore. J Nurs Scholarsh 2013; 45: 412-24 Stephan A, Renom Guiteras A, Juchems S, Meyer G. [The Balance of Care approach for the development of custom-fit health care services for people with dementia on the margins of care between home and nursing home: experiences with its application in Germany]. Z Evid Fortbild Qual Gesundhwes 2013; 107: 597-605 Zabalegui A, Hamers JP, Karlsson S, Leino-Kilpi H, Renom-Guiteras A, Saks K, Soto M, Sutcliffe C, Cabrera E. Best practices interventions to improve quality of care of people with dementia living at home. Patient Educ Couns 2014; 95: 175-84 Giebel CM, Sutcliffe C, Stolt M, Karlsson S, Renom-Guiteras A, Soto M, Verbeek H, Zabalegui A, Challis D. Deterioration of basic activities of daily living and their impact on quality of life across different cognitive stages of dementia: a European study. Int Psychogeriatr 2014; 26: 1283-93 Stephan A, Mayer H, Renom Guiteras A, Meyer G. Validity, reliability, and feasibility of the German version of the Caregiver Reaction Assessment scale (G-CRA): a validation study. Int Psychogeriatr 2013; 25: 1621-8 Giebel CM, Sutcliffe C, Challis D. Activities of daily living and quality of life across different stages of dementia: a UK study. Aging Ment Health 2014 May 15:1-9 [Epub ahead of print] Sutcliffe CL, Roe B, Jasper R, Jolley D, Challis DJ. People with dementia and carers' experiences of dementia care and services: Outcomes of a focus group study. Dementia (London). 2013 Dec 18. [Epub ahead of print]
Overview of publications Wübker A, Zwakhalen SMG, Challis D, Suhonen R, Karlsson S, Zabalegui A, Soto M, Saks K, Sauerland D: Costs of care for people with dementia just before and after nursing home placement: primary data from 8 European countries. EJHE (in press) de Mauleon A, Sourdet S, Renom-Guiteras A, Gillette-Guyonnet S, Leino-Kilpi H, Karlsson S, Bleijlevens M, Zabategui A, Saks K, Vellas B, Jolley D, Soto M; RightTimePlaceCare Consortium. Associated Factors With Antipsychotic Use in Long-Term Institutional Care in Eight European Countries: Results From the RightTimePlaceCare Study. J Am Med Dir Assoc. 2014 Aug 13. pii: S1525-8610(14)00395-8. Cabrera E, Sutcliffe C, Verbeek H, Saks S, Soto-Martín M, Meyer G, Leino-Kilpi H, Karlsson S, Zabalegui A: Nonpharmacological interventions as a best practice strategy in people with dementia living in nursing homes. A systematic review. EURGER (in press) Stephan A, Afram B, Koskenniemi J, Verbeek H, Soto ME, Bleijlevens MH, Sutcliffe C, Lethin C, Risco E, Saks K, Hamers JP, Meyer G; the RightTimePlaceCare Consortium. Older persons with dementia at risk for institutionalization in eight European countries: a cross-sectional study on the perceptions of informal caregivers and healthcare professionals. J Adv Nurs. 2014 Aug 4. doi: 10.1111/jan.12493. [Epub ahead of print] Hallberg IR, Cabrera E, Jolley D, Raamat K, Renom-Guiteras A, Verbeek H, Soto M, Stolt M, Karlsson S. Professional care providers in dementia care in eight European countries; their training and involvement in early dementia stage and in home care. Dementia 2014 Sep 2. pii: 1471301214548520. [Epub ahead of print] Afram B, Verbeek H, Bleijlevens MH, Challis D, Leino-Kilpi H, Karlsson S, Soto ME, Renom-Guiteras A, Saks K, Zabalegui A, Hamers JP; the RightTimePlaceCare consortium. Predicting institutional long-term care admission in dementia: a mixed-methods study of informal caregivers' reports. J Adv Nurs. 2014 Jul 29. doi: 10.1111/jan.12479. [Epub ahead of print] Alvira MC, Risco E, Cabrera E, Farré M, Rahm Hallberg I, Bleijlevens MH, Meyer G, Koskenniemi J, Soto ME, Zabalegui A; The RightTimePlaceCare Consortium. The association between positive-negative reactions of informal caregivers of people with dementia and health outcomes in eight European countries: a cross-sectional study. J Adv Nurs. 2014 Sep 23. doi: 10.1111/jan.12528. [Epub ahead of print] Further studies under review, e.g. Special Section Journal of Advanced Nursing