title: Formal support for informal caregivers to older persons with dementia through the course of the disease: an exploratory, cross-sectional study.
abstract: BACKGROUND
  In European countries, knowledge about availability and utilization of support for informal caregivers caring for older persons (≥65 years) with dementia (PwD) is lacking. To be able to evaluate and develop the dementia support system for informal caregivers to PwD, a survey of European support systems and professionals involved is needed. The aim of this study was to explore support for informal caregivers to PwD in European countries. We investigated the availability and utilization of support in each of the participating countries, and the professional care providers involved, through the dementia disease.
  
  
  METHODS
  A mapping system was used in 2010-2011 to gather information about estimations of availability, utilization, and professional providers of support to informal caregivers caring for PwD. Data collected was representing each country as a whole.
  
  
  RESULTS
  There was high availability of counselling, caregiver support, and education from the diagnosis to the intermediate stage, with a decrease in the late to end of life stage. Utilization was low, although there was a small increase in the intermediate stage. Day care and respite care were highly available in the diagnosis to the intermediate stage, with a decrease in the late to end of life stage, but both types of care were utilized by few or no caregivers through any of the disease stages. Professionals specialized in dementia (Bachelor to Master's degree) provided counselling and education, whereas caregiver support for informal caregivers and day care, respite care, and respite care at home were provided by professionals with education ranging from upper secondary schooling to a Master's degree.
  
  
  CONCLUSIONS
  Counselling, caregiver support, and education were highly available in European countries from diagnosis to the intermediate stage of the dementia disease, decreasing in the late/end of life stages but were rarely utilized. Countries with care systems based on national guidelines for dementia care seem to be more aware of the importance of professionals specialized in dementia care when providing support to informal caregivers. Mapping the systems of support for informal caregivers of PwD is a valuable tool for evaluating existing systems, internationally, nationally and locally for policy making.
authors.affiliation: Faculty of medicine, Department of Health Sciences, Lund University, Box 157, SE-221 00, Lund, Sweden. connie.lethin@med.lu.se.
authors.forename: Connie
authors.initials: C
authors.lastname: Lethin
authors.affiliation: Nursing Science, University of Turku, Turku University Hospital, Turku, Finland.
authors.forename: Helena
authors.initials: H
authors.lastname: Leino-Kilpi
authors.affiliation: Evidence Based Practice Research Centre, Faculty of Health and Social Care, Edge Hill University, Ormskirk, Lancashire, UK.
authors.forename: Brenda
authors.initials: B
authors.lastname: Roe
authors.affiliation: Alzheimer's disease Research and Clinical Centre in Toulouse, University Hospital, Toulouse, France.
authors.forename: Maria Martin
authors.initials: MM
authors.lastname: Soto
authors.affiliation: Department of internal medicine, University of Tartu, Tartu, Estonia.
authors.forename: Kai
authors.initials: K
authors.lastname: Saks
authors.affiliation: Faculty of Health, School of Nursing Science, Witten/Herdecke University, Witten, Germany.
authors.forename: Astrid
authors.initials: A
authors.lastname: Stephan
authors.affiliation: Department of Health Services Research, Maastricht University, Maastricht, The Netherlands.
authors.forename: Sandra
authors.initials: S
authors.lastname: Zwakhalen
authors.affiliation: Hospital Clinic of Barcelona, Barcelona, Spain.
authors.forename: Adelaida
authors.initials: A
authors.lastname: Zabalegui
authors.affiliation: Faculty of medicine, Department of Health Sciences, Lund University, Box 157, SE-221 00, Lund, Sweden.
authors.forename: Staffan
authors.initials: S
authors.lastname: Karlsson
mesh_terms: D000368:Aged; D000369:Aged, 80 and over; D017028:Caregivers / Q000523:psychology* / Q000639:trends*; D003430:Cross-Sectional Studies; D003704:Dementia / Q000453:epidemiology / Q000523:psychology* / Q000628:therapy*; D018450:Disease Progression; D005060:Europe / Q000453:epidemiology; D005260:Female; D006801:Humans; D008297:Male; D012144:Respite Care / Q000379:methods / Q000523:psychology* / Q000639:trends*; D011795:Surveys and Questionnaires
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